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 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 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...

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 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.

My 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...

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. 

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.

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: 'its a shame you don't have Multiple Sclerosis, I could treat that', and from my original GP: 'don't waste my time, there's nothing more I can do for you'.

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 could 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.

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.

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 Understanding Severe ME.  I just hope it will help all those poor Severe ME Patients following in my wake.

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.

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.

UNREST - New film shows reality of Severe ME

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.


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.”
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. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.
Unrest 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.
Available on iTunes and Amazon Video, and DVD due out December.

Great piece on Severe ME

Great 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...

Thank You Stephanie Land...

Here's hoping that Stephanie's hard work pays off and she helps gain exposure of the tragedy that is Severe ME/CFS...wishing you the best of luck

Hopeful news for Severe ME/CFS Patients...

Such promising signs.  Ron Davis is a truly remarkable man, father and scientist and is hopefully the researcher the Severe ME world has been hoping for for decades.  Just hope he finds answers in time for his very severely affected son Witney...

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