Hope for ME...

ME Patients learn early on in their illness that Hope is often fleeting. 

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. 

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. 

You see, it sparked something in me that I had not felt for a long while: Hope. 

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. 

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. 

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....

https://www.decodeme.org.uk/

Will Covid19 shine a light on ME?

Fantastic article in The Washington Post.

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

Most chilling paragraph is the final one....

"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."

I 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....

And incredibly timely as the world fights the Covid19 Virus.

Well done ME Action Network.

Welcome 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.

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".

Does that make me a bad person? Maybe.

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.

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.

But for now, I wish every single Covid19 patient a speedy recovery, as I would not wish ME on my worst enemy.

Welcome to Autogenic Relaxation

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 Severe Noise Sensitivity section later in this post.

Autogenic Relaxation (Patient listening to Carer version)

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.  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:

My right arm is heavy, my right arm is heavy, my right arm is heavy

My left arm is heavy, my left arm is heavy, my left arm is heavy

My right leg is heavy, my right leg is heavy, my right leg is heavy

My left leg is heavy, my left leg is heavy, my left leg is heavy

My arms and legs are heavy, my arms and legs are heavy, my arms and legs are heavy

I am relaxed and at peace (PAUSE)

My neck and shoulders are relaxed and heavy

I am relaxed and at peace (PAUSE)

Now imagine that your arms and legs feel heavy and 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:

My right arm is heavy and warm, my right arm is heavy and warm, my right arm is heavy and warm

My left arm is heavy and warm, my left arm is heavy and warm, my left arm is heavy and warm

My right leg is heavy and warm, my right leg is heavy and warm, my right leg is heavy and warm

My left leg is heavy and warm, my left leg is heavy and warm, my left leg is heavy and warm

My arms and legs are heavy, my arms and legs are heavy, my arms and legs are heavy

 I am relaxed and at peace (PAUSE)

My neck and shoulders are relaxed and heavy

I am relaxed and at peace (PAUSE)

My breathing is slow relaxed and even

My heart beat is calm and regular

My stomach is calm and warm

My forehead is cool and clear

I am relaxed and at peace

Now just lay there and enjoy this feeling of complete relaxation for a few minutes (PAUSE)

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.

Severe Noise Sensitivity

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

My arms and legs are relaxed, heavy and warm (Pause)

I am relaxed and at peace (Pause)

My arms and legs are relaxed, heavy and warm (Pause)

I am relaxed and at peace (Pause)      

(Repeat over and over….)

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. 

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 ‘and Re-Lax…”, 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.

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. 

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. 

Calm Down? Are you kidding me...

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...

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.

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. 

I mean, I was in bed 24/7 so I was already resting, right? Wrong.  

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.  

So, I heard the OT out and along the way began to learn what True Rest 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 most important lessons I had to learn.    

Neurologically, Severe ME makes Patients kind of get ‘stuck’ in the stressful ‘fight or flight’ state almost permanently 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.  So, it is vital to improvement that Patients find a way of calming down their Sympathetic Nervous System.

When I use the term ‘Rest’ in relation to treatments for Severe ME, it really means ‘Deep Relaxation’.  And I learnt that a period of Deep Relaxation, true rest, is a period when the Patient quietens the brain and 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.   

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.  

So, what was I taught: 3 ways to switch off both physically and mentally.

1. Breathing Exercises

2. Listening to soft instrumental relaxation music

3. Following a guided relaxation. 

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 Autogenic Relaxation, which I will cover in my next post.  

Looking 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.

I remember being like that. It is utterly terrifying. For both Patient and Carer alike.

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.

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.

I discovered a copy of my Daily Programme 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.

I also came across an old and really great book compiled by Emily Collingridge, called, Severe ME - A Guide To Living, 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.

http://www.severeme.info/buy-the-book.html

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.

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.

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.

Food for thought.

When will the abuse of Severe ME Patients end?

I read the heartbreaking story of very severely affected 31 year old New Zealander, Marcel Robert, this morning with tears streaming down my face.

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.

You can read Marcel'sfull story, shared by Natalie Akoorie, via this link https://m.e.awareness.nz/marcel-needs-research-for-me but originally published in the NZ Herald. A small excerpt below...

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"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. 

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. 

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'm 30 and live in an aged-care facility," he says. 

"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." 

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 
week.

Full article here https://m.e.awareness.nz/marcel-needs-research-for-me

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When will the mistreatment, neglect and abuse of Severe ME Patients end?

We 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.

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.

https://alifehidden.com/2019/08/07/emilys-appeal/

Millions Missing Still

We 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.

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?

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.

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. 

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.