Finally, an ME Debate in Parliament that gives us hope

Like 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.

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.

But not this time.

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.

Several phrases jumped out at me:

"appalling way ME Patients have been treated"

"left to rot"

"lives wrecked"

"cruel"

"Silent Sufferers.  They shall be silent no more"

"Patients' experience is also evidence"

"GET is doing harm, now"

"Training is desperately needed for Doctors & on Medical students' curriculum"

"lack of knowledge"

"Not good enough"

"Biomedical Research needed"

"A forgotten illness"

"ME Patients are 6 x more likely to commit suicide"

"too many myths"

"Sufferers voiceless for too long"

"PACE flawed"

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.

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.

To Carol Monaghan and every single MP who spoke for us, Thank You.  From the bottom of my heart, Thank You.

Full transcript of Debate can be found via this link.

https://hansard.parliament.uk/commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch



A 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.

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.

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.

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.

But many others in our community are doing whatever they can to raise awareness too, one of whom I heard about in Manchester:  Jamie Conner. (jamieconner.co.uk)

I was passed a poem written by Jamie, and once more, I was in tears.  Entitled 'A letter to My Friends & Family - About ME' 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.

So here it is, in its full glory.  Plus a video link, if that is easier for you.

https://youtu.be/hDJcJ3MbY28

A letter to My Friends and Family - About ME

Dear Friends and Family, 

I guess we've lost touch.

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'm just struggling.

I can't go out much now.  I'm weak and in pain most of the time.

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.

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.

Brain fog makes me feel confused and disorientated.  I have to really concentrate to follow conversations. 

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.

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 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 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'm now one of the forgotten ones.  One of the #MillionsMissing.

That's fine, I do understand.  Just know that I'm still here.

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'm still here and I'm still your friend.

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 will beat it....

One day.  

www.jamieconner.co.uk




ME Awareness Week - Early Day Motion launched by MP

Carol 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.

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.

We need funds.
We need research.
We need specialist care, in our homes.
And we need it now.

Together, we, the #MillionsMissing are incredibly powerful.
Change is a coming.  I can feel it.
Just like change came for HIV, Aids, MS.
Hang in there, change is a coming.

--------------

MY LETTER TO ANN COFFEY, STOCKPORT MP.

 Dear Ann, 

I am writing to ask that you support Carol Monaghan's Early Day Motion 1247, in support of ME Awareness Week.

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.

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. 

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.  At 5 10 I weighed just 6.5 stone. I was literally wasting away before my family’s eyes. 

But, here’s the thing.

I am one of the lucky ones. 
  • 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. 
  •  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. 
  • 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.
 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.

But.... 
  • Professor Findley’s NHS unit is now closed. 
  • 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. 
So those patients who follow in my wake, do not have access to Severe ME Specialists that I did.

And why don’t they?

A complete, utter and shameful lack of funding, that’s why. 

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.

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.

At best, Cognitive Behaviour Therapy and Graded Exercise Therapy are forced upon patients, making patients worse.

The way ME Patients are mistreated, ignored, patronised, disbelieved is shameful, shocking and scandalous.

So, today, I am asking you, as my MP, to support this EDM and fight for ME Patients across the UK.  

We need funds.
We need research
We need specialist care.
And we need it now.

Thank you, 

Kind regards, 

Yours sincerely

My Story (Part 6)

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 techniques that would help my body have a chance of self correcting.  I leant much about Energy Management but his integrated team also taught me these four additional crucial recovery techniques: Rest & Deep Relaxation techniques, Pacing, Graded Activity/Rest Programmes and Switching.  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.

So let’s break down Prof’s treatment protocol. 

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 almost permanently, 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.

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. 

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:

i)          Breathing Exercises
ii)         Listening to soft instrumental relaxation music
iii)        Following a guided relaxation technique.

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.

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.  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 not 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.  

So as the weeks went by I learnt the basics, I then had to learn how to put them into practice.

Michael taught me that before a Patient can even attempt to pace themselves, they need to understand that three types of energy are involved in all their daily activities:


·                     i)         Physical Energy (eg lying, sitting, eating, standing, walking)
·                     ii)        Mental or Cognitive Energy (eg thinking, reading, TV, radio)
·                     iii)       Emotional (eg happy, sad, anxious, angry)

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.

Then there is the need to grade each activity into a low energy, a medium energy or a high energy activity.  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.

Another clever technique I learnt was that of Switching.  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.    

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.         


TIME
                               ACTIVITY
ENERGY GRADE
(low/medium/high)
7.45-8am
Wake up and come to
Low
8-9.30am
Carer sort bedroom out, give me breakfast and 5 min chat. Feed self and take vitamins (all lying down on bed)

Listen Radio News, stretches lying down.

Walk 8 paces loo, wash at sink sitting on perch stool.
Medium


Medium

High
9.30-10am
                                  R E S T
10-11am
Get dressed into tracksuit bottoms and zip hoody, sitting on bed and put moisturizer on face.

Listen Classical Music (lying down on bed)

Sit out for 5 mins in bedroom chair,  high backed, to write (4 paces to chair, hand on wall as walk to maintain balance)
High

Low

Medium
11-11.30am
                                  R E S T
11.30-12.30
Walk 8 paces loo, and then another 4 paces into spare bedroom overlooking back garden.

Flick through easy (mainly pictures) magazines (5 minutes) lying on day bed.

Carer brings lunch, 5 min chat; can feed self lying on day bed.
Medium


Low


Medium
12.30-1pm
                                  R E S T
1-2pm
Walk 4 paces loo, walk back over wooden step block (starting to re train muscles in preparation for tackling stairs)

Ly on front on day bed, listen Classic FM

Ly on back, read magazine or 5 min telephone call or listen radio.
High



Low

Medium
2-2.30pm
                                  R E S T
2.30-3.30pm
Therapist/Visitor or telephone call (lying on bed)

Light music lying

Afternoon snack, feed self lying
High

Low

Low
3.30-4pm
                                  R E S T
4-5.30pm
Walk loo, then sit in high backed chair 5 mins.

My daily long Walk: 100 paces between landing/bedrooms.

Lying, watch TV 10 minutes
Medium

High

Medium
5.15-5.45pm
                                  R E S T
5.45-6.45pm
Walk loo, walk back over wooden step block

Carer brings, Dinner, feed self lying quiet

Magazine read

Chat 10 minutes to Carer or telephone call 5 minutes
Medium

Medium

Medium

High
6.45-7.15pm
                                  R E S T
7.15-8.30pm
Walk 8 paces loo, wash at sink, sitting on perch stool
Listen classic FM, lying
Supper and 5 minute chat with Carer, or back massage from Carer.
Listen Classic FM, lying
Brush Teeth (using bowl brought by Carer at Dinner), undress sitting up on bed.
High
Low
High
Low
Medium
8,30-9pm
            WIND DOWN RELAXATION TAPE
9pm
Sleep

My Story (Part 5)

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.   

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 Mild or Moderate about ME.  

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 viral infection such as flu, glandular fever, Epstein Barr, or meningitis at a time when the person is under immense stress; 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 genetic predisposition as well, perhaps linked to the gene causing Gilberts Syndrome, a liver dysfunction, which I, like so many of Prof’s ME patients, had.


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.


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. .


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.


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.  

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.   

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. 



Watching 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.

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.

The abuse and neglect of Severe ME Patients has to stop, now. 

Link below for full story...

Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture

My 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:

“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.” 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.

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.

“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.

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.”


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.

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.

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.

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.

Shocking Story of CBT/GET Maltreatment of Teenager

"...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..."

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. 

"...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..."

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?

Below is her full account from Facebock...

https://www.facebook.com/ME.cvs.Vereniging/photos/a.177489265678064.40772.146572212103103/1641562282604081/?type=3&theater

My 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.

The ward was very dimly lit. Tick.

The 6 bed ward was very quiet and closed off from the noisy Nurses' Station. Tick.

There were 2 people laying very still in beds with eye masks on. Other Very Severe ME Patients, battling Light Sensitivity. Tick.

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.

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:

“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.”

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. 

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.

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.

My Story ( Part 2)

So, on to my admission to Professor Findley's specialist ME/CFS Unit in Queens Hospital, Romford Essex.

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.

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?

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 (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).   Deep down I knew I had to get to this Specialist ME Unit but how would I find the strength?

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. 

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.  

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.  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.

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.   

Anyhow, I will get into the detail of how Professor Findley's team helped me in next week's post.  See you then.



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