tag:blogger.com,1999:blog-23091628743161910582024-03-19T01:11:40.373-07:00UNDERSTANDING SEVERE ME ESSENTIAL READING FOR FAMILY & FRIENDS OF PATIENTS
Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.comBlogger69125tag:blogger.com,1999:blog-2309162874316191058.post-65857705118826475222020-06-29T02:46:00.001-07:002020-06-29T02:46:48.054-07:00Hope for ME...<div class="separator" style="clear: both; text-align: center;">
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ME Patients learn early on in their illness that Hope is often fleeting. </div>
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For decades, we have been neglected, abused, ignored and patronised by the very medical professionals we turn to to for help. We learn to stop hoping to receive the same level of medical help, support and treatments that patients of other phyically disabling illnesses expect and rightly receive. </div>
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But last week, when I heard that, finally, right here in the UK the world's largest gentetic study to uncover the biological roots of Myalgic Encelphalomyelitis, led by a partnership of patients and sceientists, had been awarded £3.2 million...well, I broke down and sobbed my heart out. </div>
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You see, it sparked something in me that I had not felt for a long while: Hope. </div>
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Genome-wide association studies have previously helped uncover the biological roots of many other complex diseases, including Alzheimers and Type 2 Diabetes so I understood that this funding could be a game changer for ME Patients and their Carers; it could help pinpoint the genetic causes of ME and guide drug development. For the first time in decades, I began to hope that this study could help Scientists finally understand this cruel disease and ultimately find treatments, and who knows, perhaps even a cure. </div>
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But to work well, the study needes to recruit around 20,000 ME Patients whose DNA will be compared wtih that of a similar number of non ME matched controls. These will be people from a similar population who do not have ME drawn from the half million strong UK ME Biobank. </div>
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I have signed up to participate in the study....all that will be required is a saliva sample, so even Very Severe ME Patients can be included. If your loved one would like to be signed up, I have posted below the link to DECODE ME team, where you can find out everything you need to know....</div>
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<a href="https://www.decodeme.org.uk/">https://www.decodeme.org.uk/</a></div>
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<br />Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-85281338192802492632020-06-03T01:15:00.003-07:002020-06-03T01:19:56.883-07:00Will Covid19 shine a light on ME?Fantastic article in The Washington Post.<br />
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<a href="https://www.washingtonpost.com/health/could-covid-19-cause-long-term-chronic-fatigue-and-illness-in-some-patients/2020/05/29/bcd5edb2-a02c-11ea-b5c9-570a91917d8d_story.html">https://www.washingtonpost.com/health/could-covid-19-cause-long-term-chronic-fatigue-and-illness-in-some-patients/2020/05/29/bcd5edb2-a02c-11ea-b5c9-570a91917d8d_story.html</a><br />
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Most chilling paragraph is the final one....<br />
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"Given the historical neglect of ME - very few medical students even learn about it - many physicians and researchers who follow Covid-19 patients may think they are discovering a new phenomenon in the patients who are slow to recover. Instead, they'll be rediscovering a common illness that's been known, and neglected and afflicting many people - for decades."Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-7601273331574631962020-05-10T05:22:00.002-07:002020-05-10T05:22:52.388-07:00I got a Virus. I didn't die. But I never recovered...This is the most powerful video about ME that I have seen in years....<br />
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And incredibly timely as the world fights the Covid19 Virus.<br />
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Well done ME Action Network.<br />
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<br />Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-71408219376090178542020-05-10T05:13:00.000-07:002020-05-10T06:06:18.611-07:00Welcome to our world....Along with the rest of the world, I have looked on in horror as Covid19 has ravaged populations, causing such terrible suffering and so very many deaths.<br />
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But, when I read of recovering Covid19 patients, who, whilst seemingly over the acute stage,seem to have moved on to a chronic stage, where they are struggling with debilitating fatigue and cognitive impairment, with no real answers from their Doctors....I cannot help but think to myself: "Welcome to our world".<br />
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Does that make me a bad person? Maybe.<br />
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Or maybe it just makes me a person who is so utterly fed up with how most of the medical establishment has ignored, disbelieved, patronised and neglected the millions of ME patients who have suffered from debilitating fatigue and cognitive impairment for decades.<br />
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All I hope is that, maybe, just maybe, properly funded biomedical research will now be a priority for governments across the world. To find out why some patients recover quickly from viruses, whilst some go on to suffer for years.<br />
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But for now, I wish every single Covid19 patient a speedy recovery, as I would not wish ME on my worst enemy.<br />
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<br />Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-40025650092282954912020-03-04T01:30:00.000-08:002020-03-04T01:31:30.656-08:00Welcome to Autogenic Relaxation<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Autogenic Relaxation is a technique I learnt when I was an in-patient for 6 weeks at Professor Findley's ME Unit in Romford Essex. I found it to be one of the most
powerful forms of Deep Relaxation, and when I learnt to quieten my busy, whirring, stressed out mind, it seemed to have the knock on benefit of actually freeing up precious energy for my body; so I have outlined below a basic Autogenic
exercise, maybe you could perhaps record in a very gentle, slow voice, for your loved one or print off a copy and give it to his/her Carer to read out to them. And if the patient is so severely noise sensitive that even listening causes too much pain, then scroll to <b>Severe Noise Sensitivity </b>section later in this post. </span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<u><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Autogenic
Relaxation (Patient listening to Carer version)</span></u></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<u><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;"></span></u></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<u><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;"></span></u></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<u><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;"><span style="text-decoration: none;"></span></span></u><i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Lying down get as supported as you can – use pillows
under your arms/legs if you need to – then close your eyes and imagine that
your arms and legs feel heavy.<span style="mso-spacerun: yes;"> </span>Don’t try
too hard, just be aware of your arms and legs, then listen to me as I repeat
some phrases to you, and feel your arms and legs feeling relaxed and heavy as
we work through this relaxation:</span></i></div>
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<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My right arm is heavy, my right arm is heavy, my right arm is heavy </span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My left arm is heavy, my left arm is heavy, my left arm is heavy</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My right leg is heavy, my right leg is heavy, my right leg is heavy</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My left leg is heavy, my left leg is heavy, my left leg is heavy</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My arms and legs are heavy, my arms and legs are heavy, my arms and legs
are heavy</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">I am relaxed and at peace (PAUSE)</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My neck and shoulders are relaxed and heavy</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">I am relaxed and at peace (PAUSE)</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Now imagine that your arms and legs feel heavy <b style="mso-bidi-font-weight: normal;">and</b> warm; feel the warmth flowing down through your arms from your
shoulder, down your arms into your fingers and down your legs into your feet
and toes, and again listen to me as I talk you through this relaxation:</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My right arm is heavy and warm, my right arm is heavy and warm, my right
arm is heavy and warm </span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My left arm is heavy and warm, my left arm is heavy and warm, my left
arm is heavy and warm</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My right leg is heavy and warm, my right leg is heavy and warm, my right
leg is heavy and warm</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My left leg is heavy and warm, my left leg is heavy and warm, my left
leg is heavy and warm</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My arms and legs are heavy, my arms and legs are heavy, my arms and legs
are heavy</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;"> I am relaxed and at peace (PAUSE)</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My neck and shoulders are relaxed and heavy</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">I am relaxed and at peace (PAUSE)</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My breathing is slow relaxed and even</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My heart beat is calm and regular</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My stomach is calm and warm</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My forehead is cool and clear</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">I am relaxed and at peace</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Now just lay there and enjoy this feeling of complete relaxation for a
few minutes (PAUSE)</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Ok, now it is time to finish, but know that when you open your eyes, you
will feel more relaxed and will carry this sense of peace with you throughout the
coming hours.</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<u><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Severe Noise Sensitivity</span></u></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">As you can see, Autogenic
Relaxation is pretty straightforward, the main objective being to rest both the
mind and body; but if it is simply too much for the Patient to listen to this relaxation or someone reading it out to them very, very slowly due to severe Noise Sensitivity, then suggest to the Patient that they could try to just say a few of the phrases over to themselves in
their heads, to try and quieten the brain’s ‘chatter’, eg </span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My arms and legs are relaxed, heavy and warm (Pause)</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">I am relaxed and at peace (Pause)</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">My arms and legs are relaxed, heavy and warm (Pause)</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">I am relaxed and at peace (Pause)<span style="mso-spacerun: yes;">
</span></span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">(Repeat over and over….)</span></i></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Alternatively, if they are at
the stage of the illness when their brain is just too foggy then they could try
doing something else; when I was just too ill to do a full autogenic
relaxation, I would simply lay still, close my eyes, put in my earplugs and
just say to myself over and over again a simple relaxing mantra like ‘relax’,
‘calm’, ‘heal’ or ‘peace’, in my head, which proved just as relaxing and
calming.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">I would be lying down, trying
to become aware of my breathing, inhaling slowly, and exhaling slowly, on the
outward breath, I would just say to myself <i style="mso-bidi-font-style: normal;">‘and
Re-Lax…”,</i> and just keep repeating for about 10 minutes, before listening to
some very soothing, gentle relaxation music for the rest of my 30minute rest
period.</span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Like all things learning to
relax takes practice, as the racing brain keeps wanting to break into the
Patients’ thoughts, but if they stick with it and keep trying, they will find
that it becomes easier, and easier.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Indeed, when I talk to people about Rest and Relaxation periods, I tell
them that I regard my 30-minute Rest Periods in just the same way as I would a
Prescription for a medicine, because for Severe ME Patients that is precisely
what they are, a prescription for desperately needed rest. </span><u><span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;"><span style="text-decoration: none;"> </span></span></u></b></div>
Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-76436767744775841802020-02-20T01:15:00.001-08:002020-03-04T01:12:06.580-08:00Calm Down? Are you kidding me...<br />
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">When a Severe ME Patient is told to 'Calm Down' it is one of the most patronising, insulting, infuriating things that can ever be said to us. Here we are, laying in a darkened room, unable to walk, talk or sit with little hope of a specialist Medic arriving to tend to us as other patients of chronic illnesses rightly expect. Nope, we are basically left to rot, and then someone comes along and tells us to 'Calm Down'. Well...</span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif;">But, here's the thing: somehow we have to find a way to do just that. Until we get the medical help, support and treatments we so desperately deserve and need, this is our best chance to give our body and brain any chance of rebuilding. </span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif;">And, believe me, I've been there and frankly, although I was a little more than a breathing corpse at my most severe, all I wanted to do to Professor Findley's Occupational Therepist who kept telling me to try to 'Calm Down & Rest' was punch her. </span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif;">I mean, I was in bed 24/7 so I was already resting, right? Wrong. </span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif;">I was in bed 24/7 yes, but my brain was either whirring and racing constantly trying to figure a way out of this living hell, or my brain was in a deep deep coma like fog brought on by the constant whirring. </span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif;">So, I heard the OT out and along the way began to learn </span><span style="font-family: "times new roman" , serif;">what <b>True Rest </b>actually meant, how True Rest periods were perhaps my best chance of improvement and to this day, I firmly believe this was one of the </span><span style="font-family: "times new roman" , serif;">most important lessons I had to learn. </span><span style="font-family: "times new roman" , serif;"> </span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Neurologically, Severe ME makes Patients kind of get ‘stuck’ in the stressful ‘fight or flight’ state <b style="mso-bidi-font-weight: normal;">almost permanently </b>which severely affects all our primary body
systems: breathing, muscles/joints, blood circulation,
special senses, digestion, whilst our brains are working overtime constantly in
a problem-solving manner – utterly and completely exhausting.<span style="mso-spacerun: yes;"> </span>So, it is vital to improvement that Patients find a way of calming down their <b>Sympathetic Nervous System</b>.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">When I use the term <b>‘Rest’ </b>in
relation to treatments for <st1:city w:st="on">Severe</st1:city> ME, it really
means <b>‘Deep Relaxation’</b>.<span style="mso-spacerun: yes;"> And I learnt that a </span>period of Deep Relaxation, true rest, is a
period when the Patient quietens the brain <b>and</b> the body....not easy at all when your Sympathetic Nervous System is stuck in fight and flight mode, but key to improvement and giving your body/brain any chance of self correcting. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">Indeed, when I was at my most
Severe, bed-bound, light sensitive, in constant pain, sleeping perhaps 3-4
hours a night if I was lucky, unable to do anything for myself, lying in my bed
awake, anxious, and terrified at what was happening to me for 20 hours a day
was anything but restful……….but when I was taught by Professor Findley’s CFS/ME
team how to switch off my racing brain and calm down my Sympathetic Nervous
System, well, it was nothing short of amazing. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">So, what was I taught: 3 ways to switch off both physically and mentally.</span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">1. Breathing Exercises</span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">2. Listening to soft instrumental relaxation music</span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">3. Following a guided relaxation. </span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;">I also learnt to treat these Rest Periods as if they were prescribed medication. If I needed to do a 30 minute Rest Period 7 times per day, that's what I did. And it worked. And the most effective form of guided relaxation for me, was <b>Autogenic Relaxation, </b>which I will cover in my next post. </span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<span style="font-family: "times new roman" , serif; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal" style="mso-pagination: widow-orphan;">
<br /></div>
<br />Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-55746079598437351422020-01-20T04:04:00.002-08:002020-03-04T01:10:15.323-08:00Looking back to move forward....This week I was contacted by the extremely worried Carer of a Severe ME Patient who had been in touch with me about a year ago. I learnt from her Carer, that, heartbreakingly, her Patient had deteriorated terribly; currently, she is unable to walk, speak, feed herself or tolerate any stimulation in any form.<br />
<br />
I remember being like that. It is utterly terrifying. For both Patient and Carer alike.<br />
<br />
And what makes my blood boil is that, here we are in 2020, after decades and decades of Patients suffereing like this, medical professionals are still seemingly at a complete loss as to how to help Very Servere ME Patients. Leaving Carers the world over having to somehow get through each day, watching their loved one suffer, without any meaningful help or support. No other illness suffers this level of abuse, neglect and contempt and it is unforgivable.<br />
<br />
So, my husband and I went hunting and found some old notes from when I was admitted the first time to Professor Findley's ME Unit back in 2000, in the hope that there might be a little nugget of information that might, just might, be useful to her Carer.<br />
<br />
I discovered a copy of my <i>Daily Programme</i> that the Occupational Therapists put together for me during my first week on Ward B1, which was a glaring reminder of just how severely disabled I was back then. Sending it over to her Carer, I wondered if it might be of use to any other Severe ME Patients out there, so I am attaching a photo of it below, together with a blank form too, which might be useful to Carers to help them plan out their Patient's day.<br />
<br />
I also came across an old and really great book compiled by Emily Collingridge, called, <i>Severe ME - A Guide To Living, </i>which helped my Carers enormously when I was severely affected. It is packed with information, written by someone who endured Very Severe ME first hand; It seems to still be available and I can thoroughly recommend it to any family or friend whose loved one is Severely affected. Here is the link, available from Action For ME for £5.99.<br />
<br />
<a href="http://www.severeme.info/buy-the-book.html">http://www.severeme.info/buy-the-book.html</a><br />
<br />
Below are images of my old ME Programme Sheets. Most important thing to remember as you read them, is just how painstakingly every single tiny exertion has to be broken down and paced out over the course of the day, and week.<br />
<br />
I found it useful to think of managing a Severe ME Patient's tiny activities just as you would manage the building of a Tower of Jenga pieces.<br />
<br />
If a Carer tries to pile on the Jenga pieces all in one big go, say changing the Severe ME Patient's clothes all in one go in the morning...then the patient will crash and sink even farther into Severe ME oblivion...but if the Carer spreads out the load, doing a little tiny bit of eg the clothes-changing activity over the course of a few hours, then the patient stands a better of chance of being able to cope with the effort demanded of them, and the Jenga Tower will not come crashing down.<br />
<br />
Food for thought.<br />
<br />
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<br />Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-15748785785198770522019-11-06T06:18:00.003-08:002019-11-06T06:18:40.296-08:00When will the abuse of Severe ME Patients end? <br />
<div class="image-block-wrapper has-aspect-ratio" data-animation-tier="1" data-description="<p class="">Marcel Robert lives in a quiet, darkened room in a rest home. The 31-year-old suffers from a chronic, debilitating illness. Photo / Supplied</p>" id="yui_3_17_2_1_1573034216476_125" style="overflow: hidden; padding-bottom: 80.1389%;">
I read the heartbreaking story of very severely affected 31 year old New Zealander, Marcel Robert, this morning with tears streaming down my face.<br />
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It is a long article, but please read, share and spread the message that Severe ME Patients continue to be globally abused, neglected and mistreated. In my opinion, it is the biggest medical scandal, ever. <br />
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You can read Marcel'sfull story, shared by Natalie Akoorie, via this link <a href="https://m.e.awareness.nz/marcel-needs-research-for-me">https://m.e.awareness.nz/marcel-needs-research-for-me</a> but originally published in the NZ Herald<i><b>. </b></i>A small excerpt below...<br />
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<i><b>"Marcel Robert lives in a rest home. He is 31 years old. Natalie Akoorie finds out what it's like to be unable to live life because of an illness and why funding for research is so important.</b></i><i><b></b></i><i><b> </b></i><br />
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<i>In a darkened room at Oxford Court Lifecare in Dunedin, a man who should be in the prime of his life is wasting away. Marcel Robert is bedbound, unable to care for himself, barely able to hold a conversation above a whisper.</i><i> </i><br />
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<i>He's been living like this, solely reliant on caregivers to survive, for 18 months and there's no hope of improvement anytime soon.</i><i> </i><br />
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<i>"I'm 30 and live in an aged-care facility," he says. </i><br />
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<i>"I'm completely bedbound, unable to leave my room. "I'm in constant pain in my gut and muscles. Constant nausea, dizziness, brain fog, severe fatigue, fevers, burning eyes that are too sore to focus."I can't enjoy a view, or look at my niece. It's been years since I've had a proper conversation. "I'm missing out on life, all the big things; kids, a career, good friendship. And all the little things that make life worth it." </i><br />
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<i>Sleep doesn't come easy for Robert. An eye mask is necessary to dim light and watching television, his last distraction from reality, is becoming difficult. But he is grateful for the compassion shown by his caregivers."They do a lot of little things for me here that I can no longer do myself. Things like providing meals, helping me wash daily and shower weekly, cleaning my room, washing my clothes." Ron says his son now struggles to sit up just a little in bed and when caregivers shower him once a </i><br />
<i>week.</i><br />
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Full article here <i><a href="https://m.e.awareness.nz/marcel-needs-research-for-me">https://m.e.awareness.nz/marcel-needs-research-for-me</a> </i><br />
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<b>When will the mistreatment, neglect and abuse of Severe ME Patients end?</b><i> </i><br />
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Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-74187721965503953412019-08-18T11:02:00.002-07:002019-08-18T11:04:42.510-07:00We Remember Emily... Emily Colllingridge was an extraordinary woman. Despite battling Severe ME for many years, she was an inspiration to so many of us for how she selflessly shared the harsh realities of this cruel, bewildering & utterly devastating illness through her writing... so that others would perhaps not suffer the ignorance & lack of compassion given to Severe ME Patients.<br />
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Below is a tribute to Emily & a heartfelt piece written by her in 2010, a year before she lost her fight against Severe ME & died in hospital.<br />
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<a href="https://alifehidden.com/2019/08/07/emilys-appeal/">https://alifehidden.com/2019/08/07/emilys-appeal/</a>Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-41647669715122925822019-04-15T06:01:00.001-07:002019-04-15T07:41:11.602-07:00Millions Missing StillWe are already well into 2019 and it fills me such sorrow to realise that yet again in May, we will be running another event to try and raise awareness of the cruel reality of Severe ME.<br />
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When will the Millions Missing Severe ME Patients stop being ignored, mistreated, patronised and left to rot in their beds? When will their Carers receive the help, guidance and support that Carers of other physically disabling illnesses receive unconditionally?</div>
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I honestly believe how ME Patients have been treated for decades is the single biggest medical scandal since AIDS. And when will it change? When will the powers that be in the medical world scream "Enough"? Lives are being lost, childhoods ruined, careers abandoned, families shattered and yet here we are, again, going into another ME Awareness Week 6-12 May.</div>
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It makes me want to weep. But know this, our roar is getting louder and I believe our voices are being heard more. But we need to keep the pressure on. However, those who are so physically disabled by ME need to concentrate on themselve and exhausted Carers need to leave the campaigning to people like me, our family and friends and the few Politicians who seem to care, notably Carol Monaghan MP. We understand exactly the hell that is Severe ME and we will not rest until the Millions Missing receive the help, guidance and support they so desperately deserve. </div>
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One day, I hope ME Awareness Week will not be needed. But in 2019 it still is, and I am looking forward to roaring for all of you, in Manchester on Saturday 11 May 2pm-5pm St Peters Square, where we will again be laying out shoes and stories to represent the Millions Missing, in such a powerful and emotive way. </div>
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Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-89845980108623898872018-08-08T11:39:00.002-07:002018-08-08T11:39:25.762-07:00Severe ME Day<div style="font-family: Helvetica; font-size: 12px; line-height: normal;">
<span style="font-size: 12pt;">For all you Severe ME Patients out there, wherever you are in the world, just know how amazing you are to have got through one more day without the medical help & support you deserve.</span></div>
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<span style="font-size: 12pt;">And to all your Carers, thank you. From the bottom of my heart, thank you for taking care of your loved one without the medical help & support you too deserve.</span></div>
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And thank you to The ME Association, for the great work they have done today trying to explain the devestating realities of living with Severe ME and gaining much neeeded media coverage here in the UK.</div>
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<a href="https://www.meassociation.org.uk/2018/08/press-release-two-teenagers-hit-by-devastating-severe-m-e-reveal-the-brutal-reality-of-life-with-the-disease-08-august-2018/">https://www.meassociation.org.uk/2018/08/press-release-two-teenagers-hit-by-devastating-severe-m-e-reveal-the-brutal-reality-of-life-with-the-disease-08-august-2018/</a></div>
Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-69632388026193721072018-07-27T08:26:00.001-07:002018-07-27T08:26:42.638-07:00Vindication for Severe ME SuffererSensitive BBC article on the tragic story of Merryn Crofts whose family have worked so tirelessly to secure formal recognition that this poor, poor girl died from extreme malnutrition caused by Severe ME. <br />
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Heartbreaking story, but an incredibly brave family who carried on fighting for their beloved daughter and sister after her death to secure vindication and recognition of how life threatening Severe ME is.<br />
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<a href="https://www.bbc.co.uk/news/amp/health-44969741?__twitter_impression=true">https://www.bbc.co.uk/news/amp/health-44969741?__twitter_impression=true</a>Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-34245794174772584462018-06-29T02:41:00.004-07:002018-06-29T02:44:29.184-07:00Finally, an ME Debate in Parliament that gives us hopeLike so many other ME Patients & their Carers, I tuned in on 21 June 2018 to watch live the Debate on ME in Parliament fought for and secured by the wonderful Carol Monaghan MP.<br />
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Despite all the positivity surrounding this, I found myself not actually wanting to watch the debate. So many times over the last 2 decades I have heard that things are going to change for ME Patients, but time and time again, we have been let down, our hopes dashed.<br />
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But not this time.<br />
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I sat there, watching, listening and frankly, could not believe what I was witnessing. Every single MP who spoke....and there were just so very many....spoke with passion, knowledge, compassion and anger at how abandoned ME Patients have been. Every single one had first hand knowledge of ME Patients, many of Severe ME Patients, and they spoke loudly for them.<br />
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Several phrases jumped out at me:<br />
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"appalling way ME Patients have been treated"<br />
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"left to rot"<br />
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"lives wrecked"<br />
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"cruel"<br />
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"Silent Sufferers. They shall be silent no more"<br />
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"Patients' experience is also evidence"<br />
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"GET is doing harm, now"<br />
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"Training is desperately needed for Doctors & on Medical students' curriculum"<br />
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"lack of knowledge"<br />
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"Not good enough"<br />
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"Biomedical Research needed"<br />
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"A forgotten illness"<br />
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"ME Patients are 6 x more likely to commit suicide"<br />
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"too many myths"<br />
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"Sufferers voiceless for too long"<br />
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"PACE flawed"<br />
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I have to admit, I could not watch it all in one sitting. I often had tears streaming down my face. As I sat there, so lucky to have reclaimed a decent quality of life against the odds....I felt so angry and desperately saddened by all the lives wrecked, all the dreams shattered and all the lives lost to this most cruel of illnessess.<br />
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But once I had stopped weeping, I felt something new stir in my heart: HOPE. Hope that, finally, just finally, things might be about to change for ME Patients and their Carers.<br />
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To Carol Monaghan and every single MP who spoke for us, Thank You. From the bottom of my heart, Thank You.<br />
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Full transcript of Debate can be found via this link.<br />
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<a href="https://hansard.parliament.uk/commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch">https://hansard.parliament.uk/commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch</a><br />
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<br />Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-77797100168541306102018-05-23T02:16:00.001-07:002018-05-23T02:30:54.096-07:00A Letter to my Friends & Family - About ME I was very lucky to be able to attend #MillionsMissing Manchester event on 12th May. My city, together with so many across the globe, did the 17 million missing ME Patients worldwide, proud. We filled St Peter's Square with hundreds and hundreds of pairs of shoes to symbolically represent all those missing.<br />
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At times heartbreaking, overwhelming, humbling, my husband and I made it through, but not without a lot of tears. Tears for the years we ourselves had lost to this cruel illness, and tears of frustration and fury at how ME Patients continue to be mistreated, ignored, patronised, disbelieved is shameful, shocking and scandalous.<br />
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We met so many mothers, fathers, sisters, brothers, husbands, wives, daughters, sons, friends who were there, representing their loved ones, trapped at home, in pain, many unable to talk, walk or even feed themselves, seemingly invisible to those Medical Professionals whose duty it is to care for them.<br />
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But the fight and determination of all those there on May 12th was palpable. Our movement is growing. And I firmly believe that change is a coming, largely thanks to Jen Brea for her film Unrest, and Ron Davis for his quest for answers.<br />
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But many others in our community are doing whatever they can to raise awareness too, one of whom I heard about in Manchester: <b>Jamie Conner</b>. (jamieconner.co.uk)<br />
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I was passed a poem written by Jamie, and once more, I was in tears. Entitled '<i>A letter to My Friends & Family - About ME' </i>it is a honest and heartfelt message that I think should be shouted from the rooftops. Some of it might not relate directly to Very Severe ME Patients, but I still think it is a wonderful message that many ME Patients could share with their loved ones to help them understand what they are going through.<br />
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So here it is, in its full glory. Plus a video link, if that is easier for you.<br />
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<a href="https://youtu.be/hDJcJ3MbY28">https://youtu.be/hDJcJ3MbY28</a><br />
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<b>A letter to My Friends and Family - About ME</b><br />
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<i>Dear Friends and Family, </i><br />
<i><br /></i>
<i>I guess we've lost touch.</i><br />
<i><br /></i>
<i>It's not because I don't want you in my life anymore. It's not because I've given up on our friendship. </i><br />
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<i>I'm just struggling.</i><br />
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<i>I can't go out much now. I'm weak and in pain most of the time.</i><br />
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<i>Some days are better than others, but even on a rare 'good' day, I have to pace myself. A couple of hours out in the supermarket or visiting family means pain, exhaustion and usually a crippling migraine later.</i><br />
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<i>Along with the pain and fatigue, I am also affected by heightened senses. So bright lights, loud noises and crowded places have a huge negative impact on me.</i><br />
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<i>Brain fog makes me feel confused and disorientated. I have to really concentrate to follow conversations. </i><br />
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<i>I sometimes stutter and can't form a sentence. I struggle to find the right words. This is one of the reasons I don't call you.</i><br />
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<i>The other, is that my anxiety has reached a level where just the thought of talking on the phone makes me feel physically sick and anxious.</i><br />
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<i>I also don't want to talk about how my life has changed. I don't want to explain over and over that I can't do most things anymore. I don't want to have to explain this illness. I don't want to try to convince you that I'm ill because 'I don't look ill'. I don't want to go through a list of pills or home remedies that you think will help. Believe me I've tried everything. </i><br />
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<i>I see pictures of you all, my friends and family, out having fun, or busy working and living your lives. But I'm left behind. I don't interest you anymore. I can't go out and have fun, so therefore, I can't be part of your life.</i><br />
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<i>I'm now one of the forgotten ones. One of the #MillionsMissing.</i><br />
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<i>That's fine, I do understand. Just know that I'm still here.</i><br />
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<i>Watching you live your lives. Cheering you on when you're doing well. Feeling for you when you're going through something hard. Laughing at your antics when you're being your usual crazy self.</i><br />
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<i>I'm still here and I'm still your friend.</i><br />
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<i>Keep laughing and keep living and I'll catch up when I can, because I know I will beat this Myalgic Encephalomyelits - this ME.</i><br />
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<i>I will beat it....</i><br />
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<i>One day. </i><br />
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www.jamieconner.co.uk<br />
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Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-42003050303248133212018-05-11T02:52:00.003-07:002018-05-11T03:05:30.550-07:00ME Awareness Week - Early Day Motion launched by MPCarol Monaghan MP has launched an Early Day Motion and she needs all our help in asking our MPs to sign her motion, to increase the chance it will lead to a much needed, actual debate in Parliament.<br />
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Below is the letter I have just emailed to my MP, Ann Coffey. Please, if you can, write to your MP, and if you are too ill to do so, please ask a friend or relative to do so on your behalf.<br />
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We need funds.<br />
We need research.<br />
We need specialist care, in our homes.<br />
And we need it now.<br />
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Together, we, the #MillionsMissing are incredibly powerful.<br />
Change is a coming. I can feel it.<br />
Just like change came for HIV, Aids, MS.<br />
Hang in there, change is a coming.<br />
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MY LETTER TO ANN COFFEY, STOCKPORT MP.<br />
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<i><span style="font-family: "times" , "times new roman" , serif;"> <span style="font-size: 12pt;">Dear Ann, </span></span></i><br />
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<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">I am writing to ask that you support Carol Monaghan's Early Day
Motion 1247, in support of ME Awareness Week.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
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<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">As your constituent, this is really important to me, and I would
be very grateful if you could sign and lend your support to this EDM.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">I know first-hand the hidden, living hell that a Severe ME Patient
endures; Severe ME may not be a terminal illness but it takes people’s
lives...I know, because it took mine for several years. </span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">For the best part of 2 years I was little more than a breathing
corpse. All I could do was lay in a blacked-out room in constant pain,
unable to talk, walk or tolerate a glimmer of light. I had to be
spoon-fed, watered, washed, dressed and nursed by my husband and our mums, just
like a baby. </span><span style="color: #333333; font-size: 12pt;">At 5 10 I
weighed just 6.5 stone. I was literally wasting away before my family’s
eyes. </span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="color: #333333; font-size: 12pt;"><br />
But, here’s the thing.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="color: #333333; font-size: 12pt;">I am </span><span style="font-size: 12pt;">one of the
lucky ones.</span></span></i><i style="font-size: 12pt;"><span style="font-family: "times" , "times new roman" , serif;"> </span></i></div>
<ul type="disc">
<li class="MsoNormal" style="background: white;"><i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">I had 2 x 6-week admissions to a
specialist Severe ME Unit…Top Neurologist and ME Specialist, Professor
Findley’s amazing NHS unit in Romford, Essex. </span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></li>
<li><i><span style="font-family: "times" , "times new roman" , serif;"> </span></i><i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">I was incredibly lucky to have the support
of the lottery funded Stockport Specialist ME Outreach Nurse Service
upon discharge…Specialist ME Nurses who visited me regularly at my home
for over 3 years, and who were always at the end of the phone to support
my Carer Husband, and who would visit me in my home, whenever a setback or
relapse hit. I was so proud that we had such a domiciliary service
in Stockport - it was the envy of many PCTs across the UK. </span></span></i></li>
<li class="MsoNormal" style="background: white;"><i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">I receive weekly B12 injections, a common
treatment for ME in USA, but only because I have Professor Findley as my
ME Consultant, supporting me and requesting these be prescribed from my GP.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></li>
</ul>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;"> </span></span></i><i style="font-size: 12pt;"><span style="font-family: "times" , "times new roman" , serif;">I am living proof that Severe ME Patients, can regain some quality
of life, but only if we receive the right treatment, the right care, the right
support, at the right time, from the right Severe ME Specialists.</span></i></div>
<div class="MsoNormal" style="background: white;">
<i style="font-size: 12pt;"><span style="font-family: "times" , "times new roman" , serif;"><br /></span></i></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: "times" , "times new roman" , serif;"><i>But....</i></span><i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;"> </span></span></i></div>
<ul type="disc">
<li class="MsoNormal" style="background: white;"><i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">Professor Findley’s NHS unit is now closed.</span></span></i><i style="font-size: 12pt;"><span style="font-family: "times" , "times new roman" , serif;"> </span></i></li>
</ul>
<ul type="disc">
<li class="MsoNormal" style="background: white;"><i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">The lottery funded Stockport Specialist ME
Outreach Nurse Service, which offered not just a couple of home visits
but continuous domiciliary visits to Severe ME patients, for as long
as they needed it, is now no closed.</span></span></i><i style="font-size: 12pt;"><span style="font-family: "times" , "times new roman" , serif;"> </span></i></li>
</ul>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">So those patients who follow in my wake, do not have access to
Severe ME Specialists that I did.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">And why don’t they?</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">A complete, utter and shameful lack of funding, that’s why. </span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">The very limited number of NHS ME clinics that do exist, have to
concentrate primarily on those ME patients who can travel to/from their clinics
regularly…i.e., the Mild & Moderate ME Patients – terms in themselves
utterly patronising and insulting. There is nothing Mild or Moderate
about any grade of ME.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">Unlike other physically disabling illnesses, HIV, Cancer,
Heart Disease, Multiple Sclerosis where Patients receive compassion,
understanding, help, support, guidance, treatments. Severe ME Patients do
not.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">At best, Cognitive Behaviour Therapy and Graded Exercise
Therapy are forced upon patients, making patients worse.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">The way ME Patients are mistreated, ignored, patronised,
disbelieved is shameful, shocking and scandalous.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">So, today, I am asking you, as my MP, to support this EDM and
fight for ME Patients across the UK. </span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">We need funds.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">We need research</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">We need specialist care.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">And we need it now.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">Thank you, </span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">Kind regards, </span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<div class="MsoNormal" style="background: white;">
<i><span style="font-family: "times" , "times new roman" , serif;"><span style="font-size: 12pt;">Yours sincerely</span><span style="font-size: 12pt;"><o:p></o:p></span></span></i></div>
<b><span style="font-family: "arial" , sans-serif; font-size: 12.0pt;"><br clear="all" style="mso-special-character: line-break; page-break-before: always;" /></span></b>Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-67693648800308844832018-05-09T05:39:00.001-07:002018-05-25T02:47:39.400-07:00My Story (Part 6)<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">During my admission to
Professor Findley's Speciaist ME Unit, I have posted previously about how Amitryptilene dramatically helped correct my sleep disorder and helped control my pain; which gave me a teeny tiny spark of energy to help me work with his team, learning </span><span style="font-family: arial, sans-serif;">techniques that would help my body have a chance of self correcting. I leant much about </span><i style="font-family: arial, sans-serif;">Energy
Management </i><span style="font-family: arial, sans-serif;">but his integrated team also taught me these four
additional crucial recovery techniques: </span><i style="font-family: arial, sans-serif;">Rest & Deep Relaxation
techniques, Pacing, Graded Activity/Rest Programmes
and Switching. </i><span style="font-family: arial, sans-serif;">Until medical research finds a targetted,
pharmacological pill/protocul, I believe these 4 techniques do offer hope
for ME Patients. I pray that one day a cure will be found, and
soon, but until that time, I still believe that Professor Findley’s method is
the best chance of improvement for patients as his method gives patients the
best chance of their own terribly sick body beginning to 'self-correct’. I am
just thankful that I was lucky enough to be one of his patients.</span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">So let’s break down Prof’s
treatment protocol. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">Learning what true Rest
meant was probably one of the most important lessons that I needed to
learn. Severe ME had caused my nervous system to be uber revved up and my body to be ‘stuck’ in the stress response ‘fight or flight’ state <b>almost
permanently, </b>my primary body systems were terribly affected:
breathing, muscles/joints, blood circulation, special senses, digestion, whilst
my badly affected brain was working overtime, struggling cognitively to work in
a problem solving manner – utterly and completely exhausting. My mitochondria were severely affected, so the tiny, scarce amounts of precious energy they produced were being used up instantly. So,
Prof’s team knew that they had to teach me a way to calm down my Sympathetic
Nervous System if I were to have any chance of improvement.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">I learnt that the term
‘Rest’ in relation to treatments for Severe ME really means ‘Deep
Relaxation’. Resting for ME Patients is not reading a book, watching
TV, listening to the Radio or even quietly daydreaming, as it might have been before
I got ill. A period of Deep Relaxation, true rest, is a period of
quiet time, lying down, when the Patient aims to reduce down all stimulation of
their senses, thereby allowing the body to rest, begin to recover and start to
self-correct. Basically, the Patient needs to learn how to quieten
the body and the brain - not easy, but as I have said vital to me escaping the
prison of Very Severe ME. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">Indeed, when I was at my
most severe, at home, bed-bound, light sensitive, in constant pain, feeling like I was in some kind of toxic, brain fogged state, my central nervous
system incredibly revved up, sleeping perhaps 3-4 hours a night if I was lucky,
unable to do anything for myself, lying in my bed, trapped there, anxious, and terrified
at what was happening to me for 20 hours a day, that time laying in bed was
anything but restful…but when I was taught by Professor Findley’s team how to
switch off my racing brain and calm down my Sympathetic Nervous System, well,
the difference to my life and the rate at which I began to improve was nothing
short of amazing. I learnt 3 main ways to switch off: the
revved up nervous system:<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">i) Breathing
Exercises<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">ii) Listening
to soft instrumental relaxation music<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">iii) Following
a guided relaxation technique.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">I saw quickly that I needed
to view these 30 minute Rest and Relaxation periods spread throughout my day in
just the same way as I would Prescribed Medication, because for Severe M.E.
Patients that is precisely what they are, a prescription for an effective
treatment that will aid recovery.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">To progress, I also had to
learn to balance activity alongside rest to establish a consistent and
sustainable level of daily activity that avoids relapses through over exertion
– this is called Pacing<i>.</i> Learning to pace really helped me
start to take control of my condition and enabled me to effectively become an
expert in managing my own recovery. However whilst ‘Pacing Yourself’
when you are ill might sound a lot like common sense, that does <b>not</b> mean
that it is easy. I would say that it is the single most difficult
thing that I had to learn during my illness; the discipline required is
unimaginable, but it works. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">So as the weeks went by I
learnt the basics, I then had to learn how to put them into practice.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">Michael taught me that
before a Patient can even attempt to pace themselves, they need to understand
that <b>three types of energy</b> are involved in all their daily
activities:<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; margin-bottom: 12.0pt; mso-pagination: widow-orphan; text-indent: -36.0pt;">
<br /></div>
<div class="MsoNormal" style="background: white; margin-bottom: 3.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 0cm; mso-list: l1 level1 lfo1; mso-pagination: widow-orphan; tab-stops: list 36.0pt; text-indent: 0cm;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 10pt;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-family: "arial" , sans-serif;">i) <b>Physical Energy</b> (eg
lying, sitting, eating, standing, walking)<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; margin-bottom: 3.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 0cm; mso-list: l0 level1 lfo2; mso-pagination: widow-orphan; tab-stops: list 36.0pt; text-indent: 0cm;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 10pt;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-family: "arial" , sans-serif;">ii) <b>Mental or
Cognitive Energy</b> (eg thinking, reading, TV, radio)<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; margin-bottom: 3.0pt; margin-left: 0cm; margin-right: 0cm; margin-top: 0cm; mso-list: l2 level1 lfo3; mso-pagination: widow-orphan; tab-stops: list 36.0pt; text-indent: 0cm;">
<!--[if !supportLists]--><span style="font-family: "symbol"; font-size: 10pt;">·<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="font-family: "arial" , sans-serif;">iii) <b>Emotional</b> (eg
happy, sad, anxious, angry)<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">And some activities require
all three types of energy eg talking to a close friend/relative that the
Patient has been unable to see for several months – the physical energy
required to actually talk…the mental energy required to concentrate and
formulate sentences… and the emotional energy of seeing a loved one that the
Patient has missed so very much.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">Then there is the need
to <b>grade </b>each activity into a <i>low</i> energy,
a <i>medium </i>energy or a <i>high </i>energy activity.<b> </b> For
example, for a Severely affected M.E. Patient talking to their Carer for 2
minutes might be graded as a medium energy activity, but talking to medical
specialist on a home visit for 2 minutes, whom they have never met before,
well, that would probably be graded as a very high energy activity, because
there would probably be a higher level of stress involved.<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<br /></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;">Another clever technique I
learnt was that of <b>Switching. </b>When I started to
progress, I found that if I kept switching between different activities, ie
using different parts of the brain and different muscle groups in my body, then
I could actually do a little more over the course of a day. To give
you an idea of what an Activity/Rest Programme can look like, below is a copy
of my Home Programme of September 2000, about 6 months after I had left Prof’s
unit. </span><br />
<span style="font-family: "arial" , sans-serif;"><br /></span>
<span style="font-family: "arial" , sans-serif;">Really hope you find this post useful. Next time, I will
have much to say about Graded Exercise and why medical professionals still prescribing GET for ME Patients, a regimen that clearly causes Severe ME Patients to deteriorate even more, is, in my humble opinion, nothing more than medical abuse. <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; mso-pagination: widow-orphan;">
<span style="font-family: "arial" , sans-serif;"><br clear="all" />
<o:p></o:p></span></div>
<br />
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="background: white; border-collapse: collapse; mso-padding-alt: 0cm 0cm 0cm 0cm; mso-yfti-tbllook: 1184;">
<tbody>
<tr>
<td style="border: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<b><span style="font-family: "arial" , sans-serif;">TIME</span></b><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-left: none; border: solid windowtext 1.0pt; mso-border-left-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<b><span style="font-family: "arial" , sans-serif;"> ACTIVITY</span></b><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-left: none; border: solid windowtext 1.0pt; mso-border-left-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"><div class="MsoNormal">
<b><span style="font-family: "arial" , sans-serif;">ENERGY GRADE</span></b><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<b><span style="font-family: "arial" , sans-serif;">(low/medium/high)</span></b><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">7.45-8am</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Wake up and come to</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Low</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">8-9.30am</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Carer sort bedroom out,
give me breakfast and 5 min chat. Feed self and take vitamins (all lying down
on bed)</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Listen Radio News,
stretches lying down.</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Walk 8 paces loo, wash at
sink sitting on perch stool.</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">High</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">9.30-10am</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;"> R
E S T</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"></td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">10-11am</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Get dressed into
tracksuit bottoms and zip hoody, sitting on bed and put moisturizer on face.</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Listen Classical Music
(lying down on bed)</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Sit out for 5 mins in
bedroom chair, high backed, to write (4 paces to chair, hand on
wall as walk to maintain balance)</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">High</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Low</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">11-11.30am</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;"> R
E S T</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"></td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">11.30-12.30</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Walk 8 paces loo, and
then another 4 paces into spare bedroom overlooking back garden.</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Flick through easy
(mainly pictures) magazines (5 minutes) lying on day bed.</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Carer brings lunch, 5 min
chat; can feed self lying on day bed.</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Low</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">12.30-1pm</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;"> R
E S T</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"></td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">1-2pm</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Walk 4 paces loo, walk
back over wooden step block (starting to re train muscles in preparation for
tackling stairs)</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Ly on front on day bed,
listen Classic FM</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Ly on back, read magazine
or 5 min telephone call or listen radio.</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">High</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Low</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">2-2.30pm</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;"> R
E S T</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"></td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">2.30-3.30pm</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Therapist/Visitor or
telephone call (lying on bed)</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Light music lying</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Afternoon snack, feed
self lying</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">High</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Low</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Low</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">3.30-4pm</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;"> R
E S T</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"></td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">4-5.30pm</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Walk loo, then sit in
high backed chair 5 mins.</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">My daily long Walk: 100
paces between landing/bedrooms.</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Lying, watch TV 10
minutes</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">High</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">5.15-5.45pm</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;"> R
E S T</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"></td>
</tr>
<tr>
<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">5.45-6.45pm</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Walk loo, walk back over
wooden step block</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Carer brings, Dinner,
feed self lying quiet</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Magazine read</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Chat 10 minutes to Carer
or telephone call 5 minutes</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">High</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
</tr>
<tr>
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<i><span style="font-family: "arial" , sans-serif;">6.45-7.15pm</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<i><span style="font-family: "arial" , sans-serif;"> R
E S T</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<i><span style="font-family: "arial" , sans-serif;">7.15-8.30pm</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<i><span style="font-family: "arial" , sans-serif;">Walk 8 paces loo, wash at
sink, sitting on perch stool</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Listen classic FM, lying</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Supper and 5 minute chat
with Carer, or back massage from Carer.</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Listen Classic FM, lying</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Brush Teeth (using bowl
brought by Carer at Dinner), undress sitting up on bed.</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<i><span style="font-family: "arial" , sans-serif;">High</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Low</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">High</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Low</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Medium</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<i><span style="font-family: "arial" , sans-serif;">8,30-9pm</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
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<i><span style="font-family: "arial" , sans-serif;"> WIND
DOWN RELAXATION TAPE</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"></td>
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<td style="border-top: none; border: solid windowtext 1.0pt; mso-border-top-alt: solid windowtext 1.0pt; padding: 0cm 5.4pt 0cm 5.4pt; width: 76.3pt;" valign="top" width="102"><div class="MsoNormal">
<span style="font-family: "arial" , sans-serif;">9pm<o:p></o:p></span></div>
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<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 290.6pt;" valign="top" width="387"><div class="MsoNormal">
<i><span style="font-family: "arial" , sans-serif;">Sleep</span></i><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
</td>
<td style="border-bottom: solid windowtext 1.0pt; border-left: none; border-right: solid windowtext 1.0pt; border-top: none; padding: 0cm 5.4pt 0cm 5.4pt; width: 125.8pt;" valign="top" width="168"></td>
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Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-32906247882714888972018-04-29T01:34:00.002-07:002018-04-29T09:42:21.925-07:00My Story (Part 5)<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse; mso-padding-alt: 0cm 0cm 0cm 0cm; mso-yfti-tbllook: 1184; width: 100%px;">
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<span style="color: black;">I was incredibly lucky to be admitted to Professor Findley's Specialist NHS ME Unit in Romford and I learnt so much during my 6 week admission. It makes me furious knowing that Prof's unit, the very unit that helped me so much, the unit that could help so many more desperately ill patients, has been shut down due to lack of funding. So I feel
duty bound to try to share what I learnt there from
Professor Findley and his team, a team who worked with Severe ME Patients, day in, day
out. </span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span style="color: black;">First up, I started to understand what had happened to me, which was empowering
and stress relieving in equal measure. Whoever said ignorance is
bliss needs their head examined. I learnt that Professor Findley graded
his ME patients into 1 of 5 categories, with Grade 1 being classed as Mild
and Grade 5 categorised as Very Severe. I was a Grade 5, at the
most severe end of the spectrum. No surprise there. I just wish all medical professionals would use this Grading Categorisation. There is never anything <i>Mild</i> or <i>Moderate</i> about ME. </span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span style="color: black;">With My
OT, Michael’s help, I also started to gain a basic understanding of how Very
Severe ME had actually taken hold of me. Most ME cases seem to be
triggered by a <b style="mso-bidi-font-weight: normal;">viral infection</b> such
as flu, glandular fever, Epstein Barr, or meningitis at a time when the
person is under <b style="mso-bidi-font-weight: normal;">immense stress</b>;
my recurrent bout of tonsillitis, treated again with antibiotics, coupled
with a stressful job fitted into this causal picture perfectly. It
would appear that after the initial viral attack on my body, and being pushed
too far, too soon, by a (supposed ME specialist) NHS Psychologist, who
encouraged me to attempt a return to work park time which lead to my collapse...my immune system had gone into some kind of overdrive, firing off
excessive and toxic levels of cytokines (killer cells), with genes in my
white blood cells – a key part of the immune system – being switched on and
off in abnormal fashion leading to dysfunction in my Hypothalamic-Pituitary-Adrenal
axis (HPA), part of my Central Nervous System. It was highly
likely that there was a <b style="mso-bidi-font-weight: normal;">genetic
predisposition</b> as well, perhaps linked to the gene causing Gilberts
Syndrome, a liver dysfunction, which I, like so many of Prof’s ME patients,
had.</span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<o:p></o:p>
<br />
<div style="margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span style="color: black;">The
Hypothalamus is the major gland of the body, governing practically every
system, organ and function so I started to see how the effects of its
dysfunction had affected me so severely. My Sympathetic Nervous
System had become predominant nearly all the time, meaning I had basically
got stuck in the stressful ‘fight or flight’ state almost permanently; now
everyone knows that being like this is exhausting and physically disabling
even if just for a couple of hours – in my case, I had pretty much
been in that state for over 2 years. Dear God. Add in
the fact that my Mitochondria (the tiny structures that generate energy
within cells found mostly in muscles) were no longer functioning normally
plus lactic acid overload and I started to realise why I had been crippled by
debilitating and disabling fatigue. I started to see Severe ME as
a kind of major ‘power cut’ to my body and brain which had basically left me
paralysed from within. At last I began to understand. Taking
in the genetic predisposition factor also allowed me to stop blaming myself
for being responsible for me falling ill. I honestly believed that
it was how hard I had worked that had caused this; Prof and his team
explained to me that nothing could be more untrue.</span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<o:p></o:p>
<br />
<div align="center" style="margin-bottom: .0001pt; margin: 0cm; text-align: center;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span style="color: black;">Once
the team had carried out their full individual assessment of me and I had a
week of 9 hours of refreshing sleep nightly under my belt, due to Prof's prescribed liquid Amitryptilene, it was time to get
stuck in to working with the wider team, to learn how to get my body’s power
turned back on. Whilst Prof could not offer me a magic
cure-all-pill, he and his team had developed several therapeutic strategies
that help Severe ME patients manage our wide ranging symptoms and give our
bodies and brains the best chance of ‘self-correcting’. I quickly
learnt that that was my best chance of recovery. It wasn’t going
to be a quick process, I knew that, and frankly I didn’t care if I left the
unit no better than I had arrived; all I cared about was learning everything
I could from this team of Severe ME specialists and leaving that unit with
all the tools I needed to gain back some quality of life at home. .</span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<o:p></o:p>
<br />
<div align="center" style="margin-bottom: .0001pt; margin: 0cm; text-align: center;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span style="color: black;">So what
did I learn? First up, Energy Management. Just as
Diabetics have to learn to manage their sugar levels, so ME Patients have to
learn to manage their precious, tiny, scarce energy levels. The aim
is to plan activities with military precision to avoid the peaks and troughs
so often experienced by Patients, to avoid overloading the body/brain/central
nervous system, in effect to establish a consistent and sustainable level of
daily activity that avoids relapses through over exertion, usually referred
to as ‘Baselines’. Normal, healthy people can go to bed utterly
exhausted and their internal energy production process will simply recharge
them overnight; in ME patients our internal energy production process is
broken, so throughout the day and especially pre sleep, we have to always
keep at least 30% of our precious, tiny, scarce energy stores left so that
the body can use that 30% to recharge again. Without it we are in
real danger. Baselines are levels of activity that we can carry
out regularly without making us worse and always allow us to remain with 30%
of our scarce energy remaining to recharge.</span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<o:p></o:p>
<br />
<div style="margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span style="color: black;">For
example, one of the first things we worked on was sitting up in bed and
feeding myself. My Neurophysiotherapist, Louise, worked gently on
my tight, weak, knotted back muscles every day and my OT mapped out my goals
into tiny manageable steps. Sitting up once a day for 10 seconds
for 5 days, then 20 seconds for the next 5 days, then 30 seconds for the next
5 days, then 45 seconds for 5 days, then 1 minute for 5 days, then 1.5
minutes for 5 days, aiming in the end to be able to sit up in bed for say 5
minutes without a major flare up of symptoms; and then the lifting of the
spoon to the mouth incorporated into the activity, say lifting 1 spoonful of
food with the right arm, then 1 spoonful with the left arm for 5 days, then 2
spoonfuls each arm for the next 5 days, then 3 spoonfuls each arm for the
next 5 days, building up to say 20 spoonfuls each arm and so on. Painfully
slow. Painfully disciplined. Same activity at the exact same time, each and every day. But it worked. </span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span style="color: black;"><br />
Likewise with my walking. Increasing my walking from 6 paces per
day to 8 paces for 5 days, then up to 10 paces per day for the next 5 days,
then up to 12 paces per day for the next 5, and so on. Nudging
forward at a snail’s pace, but nudging forward nonetheless. </span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span style="color: black;"><br />
Next post, I will tell you how Rest, Deep Relaxation, Pacing, Graded Activity and Switching techniques helped me. Until then, take care of
yourselves.... and please take hope from my story... things can improve, I
promise. </span><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
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Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-73116255176102123772018-04-03T05:23:00.000-07:002018-04-03T05:23:31.899-07:00Watching Merryn waste away & die from ME was torture...I read with heavy heart and tears streaming down my face, yesterday, the story of severely affected ME Patient, Merryn, who died last year, after wasting away from Severe ME.<br />
<br />
Her brave parents have decided to go public re the tragic death of their young daughter in the hope that no more families will have to endure the heartbreak they have.<br />
<br />
The abuse and neglect of Severe ME Patients has to stop, now. <br />
<br />
Link below for full story...<br />
<br />
<a href="https://www.manchestereveningnews.co.uk/news/greater-manchester-news/bed-bound-unimaginable-pain-watching-14474293">Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture</a>Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-17025144938586622752018-03-14T03:42:00.002-07:002018-03-14T03:59:15.583-07:00My Story (Part 4)The next morning, I met Professor Findley and his wider specialist team for the first time. I was instantly struck by his presence. He seemed to be one of those larger than life characters, radiating strength, charisma, intelligence together with immense compassion for his patients, and, as I would come to realise later, a fierce determination to solve the complex puzzle of Severe ME. At our first meeting, he seemed to study me for several minutes, head tilted to one side, before speaking, as if it were the first time he had come across someone like me:<br />
<br />
<i>“We don’t get many patients here whose bodies beat light sensitivity without medical intervention. But my team here tell me that your body started to self-correct by itself…now that’s a really good sign, Catherine.”</i> This filled me with great hope and a fierce determination, much like Professor Findely’s, to learn all I could to solve my own complex ME puzzle.<br />
<br />
Prof (as he liked to be known) also immediately increased my Tricyclic Imipramine medication from 1ml to 25mls, or 5mg to 125mg in standard form. This was a massive jump and it scared me. I had experienced bad drug reactions before. So Prof came back on the ward to explain it to me - an amazing example of his commitment to his patients, a busy, revered world class Neurologist, making time to assay his patient’s fears personally to put her at ease with his treatment plan.<br />
<br />
<i>“OK, Catherine. Let me explain why I want to increase your medication. Tricyclic Antidepressants work on the Neurotransmitters in the brain. And they work really well on Severe ME patients....as your Neurotransmitters just aren’t working properly. <br /><br />It’s a bit like Doctors prescribing Aspirin to someone who has had a stroke to reduce the risk of further blood clotting….we don’t give it to them because we think they only have a headache, we give it to them because the Aspirin works in another way, a way that can help them avoid another stroke. Likewise, we don’t give Tricyclics to ME patients because we think you are merely depressed…although to be honest you have every right to be…no, we give it to you to get your Neurotransmitters working properly again. You are in the recovery phase now, you will not react badly to this, I promise you.”</i><br />
<br />
Why, of why, had no-one explained this to me like this before? I could have been on a high dose months ago, after the light sensitivity phase had passed. And therein lies the problem for Severe ME Patients the world over: there are only a handful of medical professionals who actually understand the distinct phases of Severe ME and how to treat us; and only a lucky few amongst the millions of patients worldwide who are lucky enough to ever meet them.<br />
<br />
The next 6 weeks were tough but I survived. Prof and his team were passionately committed to their patients. Comprising a fully integrated, multi-discipline team of Neuro-Physiotherapists, Occupational Therapists, Counsellors, Dieticians, Nurses, Pain Management specialists, supporting Auxiliary Nurses, Junior Doctors, these amazing people would finally give me the help, support, guidance and care I so desperately needed to take me forward. Prof and his team would focus on careful management of all the perpetuating factors of the disabling fatigue state (sleep disturbance, pain, sensory overload, brain fog, anxiety, allergy, diet, food intolerances, etc) as part of a holistic programme, including carefully structured and monitored activities of daily living in a graduated fashion; this team would simultaneously treat and help me manage the wide range of physical, cognitive and emotional symptoms, helping me to progress on all fronts, and build on the teeny tiny recovery steps my own body had taken a few months back.<br />
<br />
And I was off to a good start. I put my faith in Prof and took the increased dose of Imiprimine on my second night on B1. I was used to getting at best 4 hours broken and unrefreshing sleep per night but imagine my surprise when I awoke on Saturday morning and realised I had slept 9 hours straight through; within 48 hours of arriving here, my sleep disorder had been treated by a Severe ME Expert, providing me with a firm foundation for recovery and tiny drops of additional energy which could be put to good use.<br />
<br />
During my first week I underwent a whole battery of tests and investigations which Prof wanted carried out to ensure no stone was left unturned: blood tests to identify any haematological, biochemical and immunological problems; then EEG, ECG, Visual and Auditory potentials amongst others. I found these tests extremely draining but I understood that they were necessary. Once I had recovered from these tests, it was then time to start working with my Occupational Therapist (OT), Michael. He was a gentle young man, but fired up to help me get my life back; he was also compassionate and understanding so when I said I just could not deal with more than a 30 minute session daily with him during the first week, he did not bat an eyelid....here was a medical professional who understood Severe ME. I knew how very lucky I was to be here.Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-79489292561825040212018-03-04T02:31:00.000-08:002018-03-04T06:31:12.879-08:00Shocking Story of CBT/GET Maltreatment of Teenager <span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><i>"...the CBT/GET therapy at the rehabilitation centre is extremely dangerous for ME-patients and made me sustain permanent damage. I repeat: Permanent damage. I never returned to the level I was before I went there..."</i></span><br />
<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /></span>
<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">Above quote is taken from an heartbreaking and truly schocking story of Monique, a Dutch teenager put through punishing CBT/GET Programme for 3 months; then kicked off Programme when she deteriorated. Why? So they could manipulate their Programme's success rates and secure more government funding. </span><br />
<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /></span>
<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">".<i>..</i></span><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><i>Then all of a sudden, out of the blue, I was told they couldn’t help me anymore because I wasn’t getting better. I begged them to keep trying, but no, this was the end. Every last bit of hope I had was smashed to the ground. Later I found out how they got to that promised success rate of 80%: All patients that stayed internally for more than three months were added into the calculation. Patients who didn’t last three months were not included. It was in their best interest to throw out anybody that didn’t improve before the crucial 3 month mark, so they could access more funding from the government to continue their work..."</i></span><br />
<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /></span>
<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">As I read Monique's story, my blood boiled and tears streamed down my face. When will this mistreatment and abuse of ME Patients stop?</span><br />
<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /></span>
<span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="background-color: white; font-size: 14px;">Below is her full account from Facebock...</span></span><br />
<span style="background-color: white; font-size: 14px;"><span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><br /></span></span>
<span style="background-color: white; font-size: 14px;"><span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><a href="https://www.facebook.com/ME.cvs.Vereniging/photos/a.177489265678064.40772.146572212103103/1641562282604081/?type=3&theater">https://www.facebook.com/ME.cvs.Vereniging/photos/a.177489265678064.40772.146572212103103/1641562282604081/?type=3&theater</a></span></span><br />
<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /></span>Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-63662325001565934552018-02-28T09:14:00.001-08:002018-03-03T08:34:41.909-08:00My Story (Part 3)The 4 hour ambulance journey from Manchester to Romford left me feeling like I’d gone 10 rounds with Mike Tyson. My muscles ached, my joints were on fire, my head pounded. I was in serious pain. But as I was wheeled on a bumpy gurney to the Professor Findley's Specialist ME Unit’s ward at Old Church Hospital, a few things hit me straight away. <br />
<br />
The ward was very dimly lit. Tick. <br />
<br />
The 6 bed ward was very quiet and closed off from the noisy Nurses' Station. Tick. <br />
<br />
There were 2 people laying very still in beds with eye masks on. Other Very Severe ME Patients, battling Light Sensitivity. Tick. <br />
<br />
For the first time, I started to believe that I might actually be about to not only come face to face with other severely affected patients but also that extremely rare, and to this point seemingly mystical, breed of medical professionals who actually understood Severe ME. That was the grown up, positive, hopeful me. Unfortunately, when Andy had finished filling out all the necessary paperwork and settled me in and it was time for him to head back to Manchester, I learnt that he would not be able to visit me for 2 weeks (The Unit’s rules to ensure the patient’s scarce energy is saved initially for tests and sessions with members of the Specialist Team). That was when the terrified, baby me came out to play. I sobbed in his arms, clinging to him with all the meagre strength I could muster, begging him not to leave me there. A few years down the line, when we were in a much better place, he told me that walking out of that ward, leaving me cowering on the bed like a wounded animal, whimpering and crying out his name, was the hardest thing he had ever had to do. <br />
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But as I watched the ward door close slowly behind him, I knew, right there and then, that I had a very simple choice. Continue to waste precious energy sobbing or somehow find the inner strength to dig deep and somehow survive this. I knew there was no magic bullet cure for Severe ME but I closed my eyes and asked my passed away Dad, the only other man who had ever made me feel safe, to help me find the courage to face the coming weeks and get the most out of my time with Professor Findley’s unit so that maybe, just maybe, I could go home with a clear recovery road map. And when I opened my eyes, there was Heather, one of the team’s Occupational Therapists, standing in front of me, kindly smiling down at me, as if sent by my protector above:<br />
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“I know how scared you must be, Catherine. Feeling like you’ve been left here all alone. But you aren’t alone, I promise you. We are all hear to help you…and we will…because we understand Severe ME, honest.”<br />
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She then gave me a big, but incredibly, gentle hug and left me with Irene, one of the older auxiliary nurses who compassionately and gently spoon fed me my dinner in silence, as if I was a tiny, injured bird whose wings had bneen broken. <br />
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So Ward B1 became my new home for 6 weeks. And I met many new people whose job it was to look after me. All specially trained by Professor Findley, all working with Severe ME Patients day in day out. One of the only Units in Europe with this level of expertise and understanding. And I was here. I knew how lucky I was. Unfortunately that didn’t stop me being utterly petrified that first night. Especially as I quickly realised that the patient next to me was catheterised as well as being terribly light sensitive. I had honestly thought it impossible for anyone to be more severely affected than I had been, but in the bed right next to me lay Gareth, who proved me wrong; just 23 years old, a 6' previously fit and healthy rugby player, now unable to sit up or walk even a couple of steps per day to a hospital commode.<br />
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There and then I realised that there were different levels of hell experienced by Severe ME patients, and my hell had not been the worst.<br />
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Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com2tag:blogger.com,1999:blog-2309162874316191058.post-9284217916705134362018-01-31T03:33:00.000-08:002018-01-31T04:04:40.739-08:00My Story ( Part 2) So, on to my admission to Professor Findley's specialist ME/CFS Unit in Queens Hospital, Romford Essex.<br />
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It was a Monday morning in February 2000 when we heard I had a place; another Patient had had to forego theirs as they were simply too severely ill to make the journey. When my husband told me, my emotions went wild...on the one hand I was ecstatic to finally be on my way to get some much needed, specialist medical help...but christ I was scared, really really scared.<br />
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I had been bedbound for over 2 years. My recovery had only just begun. I had only just come out of the hellish light sensitive phase. I could only walk 8 paces to and from our bathroom 4 times daily. I could not sit up. I could only talk in whispers. I was still being spoon fed. I had a huge hole cut out in the backside of my pyjama bottoms because when I finally made those 8 paces to our loo, I was simply too unsteady and weak to pull down my PJ bottoms. I had to have ice packs on my legs and arms 3 times daily to try and ease the pain. How the hell was I going to manage the 4 hour journey from Manchester to Romford?<br />
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For the next 3 nights I remember waking from my usual 4 hours of broken sleep in a cold sweat, shaking from head to foot, sobbing my heart out...that's how terrified I was; it was only the loving arms of my husband which could calm me down; as soon as he heard me crying in the middle of the night, in he would rush to comfort me<span style="font-size: small;"> (</span><span style="font-size: x-small;"><span style="font-size: small;">we had not been able to share a bed for 2 years as my constantly jerking limbs would wreck his sleep and at times even the slightest touch from him, my limbs would burn with pain for hours).</span> <span style="font-size: small;">Deep down I knew I had to get to this Specialist ME Unit but how would I find the strength?</span></span><br />
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<span style="font-size: x-small;"><span style="font-size: small;">Thursday morning arrived. Spoon fed by my husband early. Desperately trying to keep breathing slowly to stay calm. 9am, the ambulance arrived. Carried from my bed, strapped into their chair, down the stairs they carried me, past my mum and mother in law, both there to see me off, before they too headed down the motorway separately with all my bits and to drive my husband back from Romford that evening.. I remember feeling our mums' strength, seeing the fixed smiles on their faces, the two of them desperately trying to mask their own fears as I was carried into the ambulance. </span></span><br />
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<span style="font-size: x-small;"><span style="font-size: small;">Many months later, my mum told me she could barely stop herself from fainting with shock when she saw me...in my dimly lit bedroom, no one had really been able to see how ravaged my body had been by this illness. At 5'10" I had always had a healthy, athletic build, about 10-11 stone; down at Romford, I discovered I was down to 6.5 stone. My mother told me, voice breaking, that when she saw me, being carried down the stairs by the Paramedics, I looked like the news photos she had seen when she was a child, news photos of the emaciated survivors from Aushwitz. </span></span><br />
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<span style="font-size: x-small;"><span style="font-size: small;">The journey was a nightmare; laying down yes, but limbs, joints, muscles so sore from the motion of the ambulance, my head throbbing, my neck in terrible pain. Again, it was only Andy's presence that kept me calm. </span></span>2.30pm we arrive on Ward B1, Queens Hospital.. I have never been more terrified in my life. And here I would stay, alone, without my Carers for the next 6 weeks.<br />
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<span style="font-size: x-small;"><span style="font-size: small;">What lay ahead of me I had no idea. Did we make the right decision in bringing me here? Would this Unit be able to help me? The short answer is yes, but I am out of time now for this week's posting but if you take one thing away from this part of my story, please do remember that moving a Severe ME Patient anywhere is a nightmare for them. Even the slightest movement can feel like a tornado hitting our fragile bodies. </span></span><br />
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<span style="font-size: x-small;"><span style="font-size: small;">Anyhow, I will get into the detail of how Professor Findley's team helped me in next week's post. See you then.</span></span><br />
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<br />Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-527988505353801302018-01-23T03:14:00.001-08:002018-01-23T03:16:01.289-08:00My Story (Part 1) When I started this blog I had no idea whether anyone would find it at all useful but after so many enquiries into how I escaped from the hell of Very Severe ME, I find myself attempting to summarise my story into a few pages. Here goes...<br />
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My ME story began in Summer 1997 - happily married, Account Director of a Marketing Consultancy, active, sporty, great social life, lots travelling, I worked hard, I played hard, life was good. Then came Mild ME after a recurrent bout of tonsillitis treated by antibiotics. Luckily I was diagnosed early by my GP, unluckily she sent me to a local Psychologist specialising in Cognitive Behaviour Therapy who recommended a return to consultancy work part-time; I heeded her 'go for it' advice, she was the supposed ME Medical Specialist after all; I collapsed one week later and deteriorated rapidly into Very Severe ME. Strangely enough, she then refused to take any phone calls from my understandably terrified husband who was desperately looking for help and support. I will never, ever, forgive that Psychologist. <br />
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Back in 1998/99 I was little more than a breathing corpse. For the best part of 2 years all I could do was lay in a blacked out room in excruciating pain, unable to talk, walk or tolerate a glimmer of light. Totally bedbound, I had to be spoon fed, watered, washed, dressed and nursed by my husband, mum and mother-in-law, just like a baby. Unable to walk even 8 paces to our bathroom, bedpans were a daily necessity.<br />
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For me, Very Severe ME felt like being paralysed from within, but like so many Severe ME Patients, during those years I received no useful medical treatment - I can still hear the comments of the few doctors that did come to see me: <span style="font-style: italic;">'its a shame you don't have Multiple Sclerosis, I could treat that'</span>, and from my original GP: <span style="font-style: italic;">'don't waste my time, there's nothing more I can do for you'</span>.<br />
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Thankfully, and amazingly, at the beginning of 2000 my body/brain somehow started to self-correct and I came out of the hideous light sensitivity stage and began to take baby steps on the recovery road; simultaneously, having changed GP, my husband, who fought long and bloody hard for me, then secured NHS funding for a 6 week in-patient admission to a specialist unit that <span style="font-weight: bold;">could</span> do something for me: Professor Findley's brilliant ME/CFS Unit in Romford, Essex, where I benefited so much from their expertise in treating Very Severe patients.<br />
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Yes, it has taken several years of hard slog including terrifying relapses along the way, but I now have a good quality of life - as long as I stick to the energy management rules. But I know that I am one of the few lucky ones. Yes, I am living proof that even the most severely affected ME Patients can recover quality of life, given the right advice, the right treatments and the right support, at the right time. BUT I know that millions of Severe ME Patients around the world are not as lucky as me.<br />
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Which is why I have tried to write down all I learnt along the way - and especially from my time working with Professor Findley's ME Unit - into my book <b style="font-style: italic;">Understanding Severe ME. </b>I just hope it will help all those poor Severe ME Patients following in my wake.<br />
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It contains all the information that I so wish had been available to my Friends and Family, when I was too ill to speak for myself. And I truly hope, that now, it can speak for all those Severe ME Patients too ill to speak for themselves and in some small way, ease their pain, and act as a guide out of the hell of Severe ME.<br />
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Next week I will start Part 2 of my Recovery Story, telling you about exactly how Professor Findley's team helped me. See you then.Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-54164209920867686902017-11-05T07:18:00.002-08:002017-12-22T00:54:53.343-08:00UNREST - New film shows reality of Severe ME<h2 style="background-color: white; border: 0px; clear: both; font-family: "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0px 0px 0.8125em; outline: 0px; padding: 0px; vertical-align: baseline;">
<a href="https://www.vegepaclub.com/unrest-a-magnificent-me-film-in-uk-from-20th-october/images-16/" rel="attachment wp-att-8647" style="border: 0px; color: #485e00; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;"><img alt="" class="alignleft wp-image-8647 size-full" height="168" src="https://www.vegepaclub.com/wp-content/uploads/2017/10/images.jpeg" style="border: 1px solid rgb(221, 221, 221); display: inline; float: left; height: auto; margin-bottom: 1.625em; margin-right: 1.625em; max-width: calc(100% - 14px); padding: 6px; width: auto;" width="300" /></a></h2>
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Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure.</h2>
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Synopsis</h2>
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Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.”</div>
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In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jen is moved to connect with others around the globe. Utilizing Skype and social media, she unlocks a forgotten community with intimate portraits of four other families suffering similarly. Jennifer Brea’s wonderfully honest portrayal asks us to rethink the stigma around an illness that affects millions of people. <strong style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><em style="border: 0px; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Unrest</em></strong> is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.</div>
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<strong style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><em style="border: 0px; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Unrest </em></strong>world-premiered January in the documentary competition at the 2017 Sundance Film Festival, where it won a Special Jury Prize for editing. It has since screened at SxSW, CPH:DOX, HotDocs, River Run (Audience Award for Best Documentary Feature), the Nashville Film Festival (Grand Jury Award for Best Documentary Feature), among Sheffield Doc/Fest (Illuminate Award). It also has a companion VR piece which premiered at Tribeca and won the Jury Award for best VR at Sheffield/DocFest.</div>
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<a href="https://www.unrest.film/trailer" style="font-family: inherit; font-style: inherit; font-weight: inherit;">https://www.unrest.film/trailer</a></div>
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<span style="border: 0px; color: blue; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: black; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Available on iTunes and Amazon Video, and DVD due out December. </span></span><br />
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<a href="https://www.unrest.film/watch/#digital">https://www.unrest.film/watch/#digital</a></div>
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Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0tag:blogger.com,1999:blog-2309162874316191058.post-20082271543817670822016-03-29T02:11:00.001-07:002016-03-29T02:11:34.966-07:00Great piece on Severe MEGreat to see mainstream media carrying a piece that tries to explain the hell of Severe ME. Thank you to Whitney's family for sharing photographs of their poor son, so very severely affected. Sometimes a photo really communicates far more than words ever can...<div><br><div><a href="http://www.huffingtonpost.com/-stephanie-land/chronic-fatigue-syndrome-_1_b_9513498.html?">http://www.huffingtonpost.com/-stephanie-land/chronic-fatigue-syndrome-_1_b_9513498.html?</a></div><div><br></div></div>Blogger Catherine http://www.blogger.com/profile/07148199858984264103noreply@blogger.com0