I have thought, with great hesitation and a lot of emotion, if it was time to give a little insight into my experience with a thing called GET – Graded Exercise Therapy and CBT – Cognitive Behavourial Therapy. It’s hard to revisit. But with the advent of Long Covid and some recent debacle about a Consultant specialist Professor Leslie Findley on social media, which has upset me a lot. That is an understatement. Not due to any fault on his part relating to myself I hasten to add. I feel I must do my part and speak up. It has taken me years to reach this point.
[10 to 15 minute read]
The Early Days
I first stumbled into the area of GET & CBT when 1 year plus into undiagnosed MEcfs. I had been in bed from day one of illness in the summer of 2004.
Eight months in I finally lost my job. I had to attend Occupational Health frequently. It was awful. Dragging myself out of bed, to the car (with my husband driving), to head office. To answer more questions and be made to feel worthless. After some time an attempted return was requested by them. I asked for one hour a week, seated. Why I even agreed to this I haven’t a clue. I was desperate to hang on to some identity. Three hours were required, which I knew I wouldn’t manage.
After not managing 3 hours a week for two weeks on the ill advised attempted return in early 2005. I fell asleep at the wheel of my car on a fifteen minute drive home. By the grace of God, I woke up before I hit the car in front. That was basically the beginning of the end of my job.
Following this. At my work place I had been faced with a Capability Proceeding, which transmogrified into a Compromise Agreement. Thankfully they realised how cruel putting me through a CP would have been. Or perhaps they would have just sacked me anyway. Whatever! My then fab GP described the whole scenario as my being punished for being ill. She pretty much summed up the situation. I’m not at liberty to discuss it in further detail. Hence Compromise Agreement. The compromise is that you leave and never return.
But to be honest I wish I hadn’t signed it. The Solicitor telling me I could fight for more. What did they mean fight? I was barely alive! But there you go. Desperate times force desperate measures. It wasn’t handled kindly. And I was absolutely devastated to lose my job. The organisation which I had worked for four years could have, had the will been there, referred me to the only MEcfs specialist in the County in which we live. One of the few in the Country. I wasn’t seen as valuable enough.
I must add at this juncture, my colleagues were fantastic, and did everything they could to support me in trying to keep my job. And when I had lost it they went above and beyond in supporting me and my children. I will be forever grateful to them. I will be forever grateful to the whole community of people who were like a network of scouts looking out for them. I/we were so incredibly blessed.
What Happened Next?
During 2005 my GP had spent time trying to sort out a variety of problems which flagged up requiring further investigation. One because I requested an ultrasound. I was right to. With me losing count of the hospital appointments and tests. Barely able to walk into the appointments. I felt like a ghost. But still I didn’t recover. No where near. In 2004 I had become a shadow of my former self virtually overnight. I am grateful to the many NHS technicians who were kind and thorough in trying to find answers. One in particular identifying a major issue and ensuring prompt attention. But still, no recovery.
Not much changed as I operated basically from my bed. Trying the odd foray and then experiencing the sickening ‘you are not going to make it, body is stopping, lie down now or you will fall‘. At this time I had no knowledge of PEM or pacing. I just tried to live as I had always done, ie. plough on regardless. Which didn’t work. I just became increasingly worse, going into a massive relapse in Autumn 2005. Having carried an undiagnosed infection for 6 months hadn’t helped my body at all. Months of antibiotics took their toll. I lost count of my many trips to hospital. Amazing really, all the hospital staff were so kind and caring, asking me how long I had had ME and their friend had it too. But still no glimmer of recovery.
I remember ringing my GP from my bed in the Autumn of 2005 and just saying ‘please help! They had nothing to offer.
My husband and myself were lacking any answers. And with a young family to support we were getting really desperate. We sought answers online. It looked like I had something called MEcfs. I ticked every symptom box. But that really was no help. I had been told I had PVFS. The two are connected.
The Dreaded GET
We had by chance seen an article in our local newspaper promoting a regional MEcfs clinic. WHAT! We thought. REALLY! This is amazing. We got in touch. And were initially delighted with the enthusiasm. The necessary pre-assessment blood tests were arranged, with difficulty. I had no idea what GET was at the time, this wasn’t mentioned at any time and I hadn’t expected the route I was to take. As I say, we, I was desperate for help and answers. I can say without fear of contradiction, that signing up to that clinic was the biggest mistake I have ever made.
I was assessed, and a diagnosis of MEcfs was finally confirmed. Fourteen months after originally falling ill. After making a draining journey. Bearing in mind, I wasn’t sleeping, couldn’t eat properly and struggled to remain upright etc etc. And ‘functioned’ from my bed. Home visits were agreed. After being asked what would you like to regain first? OK, er what umm Walking? SO fatigued not thinking to ask –
- What about the lack of sleep
- Food intolerances
- Inability to eat
- Dreadful gut issues
- Difficulty travelling
- Unbearable nausea
- Brain fog
- Light sensitivity
- Sensitivity to noise and smells and touch
- Numbness and burning in my face
- The burning sensation inside my skull
- The weakness
- The awful neurological symptoms
- Drastic weight loss
- Inability to do anything
- The bone crushing fatigue
- And endless list of symptoms
What about them? What about relapses, and recovering from them, which normally always take you back to square one. Zero capacity.
I had expected all of this to be ACKNOWLEDGED AND addressed. To help me heal.
It wasn’t! It was as if they were saying. If you do GET, all of it will magically disappear. Clearly, it didn’t.
At the first home visit, where I was diagnosed being at the severe level of MEcfs, I was advised to start with 2 minutes walking twice per day, then start increasing by 2 minute increments. Along with daily exercises. This on top of trying to just function during the day. Unbelievable really. Bearing in mind, this clinic wasn’t equipped to deal with severe cases, which I didn’t know or what the implications of being severe were. I thought having the diagnosis would be the ultimate answer. It wasn’t. I naively trusted them.
Thinking about it as a theoretical exercise. If I had actually been able to manage 2 minutes per day at an incremental scale, and supposing I could have increased by 2 minutes every 2 weeks, within a year I should have been able to confidently walk for an hour. Ha! I was still at the starting point of -2 minutes when I suffered extreme relapse in the Winter of 2007/2008 plus needing a wheelchair, which bizarrely a physio had recommended. It sometimes felt they were offering tips when those in charge weren’t within earshot. I should in theory have been at 2 hours at least by then. And sorry to be blunt, but that is what GET is, a one size fits all cheap quick fix theory, not suitable for the chronically ill and fatigued.
And if MEcfs was all in the mind. According to CBT I should have been able to think myself better! Dream on. Almost like a quote from Descartes – ‘I think therefore I am’. Well actually I couldn’t think and was losing a grip of who I was. Did they not think we all try that every hour of every day. In the hope we will all wake up from some distorted and horrifying dystopian dream? That the loss of health and livelihood was simply a mere fleeting nightmare created by our own subconscious. I am beginning to sound like them, help!
They also advised that I be taken out in the car every day to increase my capacity. That had to stop. It was just too much to cope with and making the fatigue worse and worse.
The idea of doing a recce of somewhere if I felt I could go out was not a bad one. But the suggestion should have been of someone else doing the research and planning from that, rather than me attempting to research then having to wait weeks before I could even consider trying it. It is almost as if they were working from the point of recovery not to the point of recovery. It was backwards. Or just make it up as you go along!
I also remember the clinic lead suggesting that our children, already young carers, should do more at home. I almost exploded, but didn’t. I just sat there seething thinking to myself ‘how dare you’! I’m not sure if one of my ‘you’ve crossed the line looks’ snuck out. I really hope it did!
But It All Went Wrong
I got a little way in, had a fleeting period of thinking maybe I might have a chance with this, and then the pain started to increase, shooting down my legs like fireworks splinters, with no let up with the fatigue. It just got worse. With my husband pleading with me not to do it. I pushed beyond my limits to meet targets set for me. And which I certainly couldn’t manage, but desperately tried to. With no one seeing the damage that was occurring and what a struggle it was. I would get to the near the end of the day and think, I haven’t done a walk yet. I would literally drag myself and then have to lie down. That is called booming and busting! Another term I didn’t know about. I think the last GET walk I attempted my husband had to rescue me. The physio told me to stop. At least some one cared, or were they just covering themselves?
GET is the perfect storm for MEcfs sufferers. As so many of us are starter/finisher/perfectionists. We don’t want to fail or let anyone down or leave a task unfinished. It’s not in our nature.
I basically reached the point of collapse following only one CBT session at the clinic, which directed all blame for being sick at me. Every and any angle of concern was directed back at me. Not sure why I had to go there. A nice enough person, but ill equipped to help severe ME sufferers. Or probably anyone with ill health.
No offence is intended to practicing CBT therapists. Reframing thoughts does help as in ‘No, you’re not a failure for falling sick’ or ‘it is good to rest‘ or ‘you are a worthy parent even though you have a chronic illness‘. Etc. Not sure how reframing helped whilst on my way to A&E. ‘Thank goodness for oxygen’?
What Were They Doing?
I asked for a meeting with the clinic lead. As nothing was working. I had been asked to complete activity grading sheets to identify low, medium, high energy uses. Everything was high. I now have super-high indicators. Well, I always did but no one bothered to identify that. Nothing was done with them. I was given daily management sheets. No adaptations were offered or suggested. No effort made to help me establish a realistic baseline. Nothing. Just keep ploughing yourself into the ground. No one suggesting I was trying to push myself far too hard and comparison scoring I just didn’t understand. Be unable to shower because you can’t stand up, and don’t eat because you feel so sick. And don’t bother sleeping. And PEM, don’t ask us we wouldn’t know anyway.
The alarm bells really did ring when they had never heard of a crash. They thought of it as a minor setback, a hiccup. WRONG AGAIN! An ME crash is when you literally are stopped in your tracks, you collapse, you keep sinking physically and neurologically for any from an hour to hours. It is so utterly horrendous. They didn’t know what that was, or how damaging it is. Each crash eats away at your reserves, leaving less and less. You never recoup what you lose from them. Ever! They are a massive warning from the body that you literally are in red. You have no Reserve, none.
A physio had visited and couldn’t understand why I was unable to do a pelvic bridge. I still can’t. And can only manage a supine tilt with my back on the bed or floor occasionally as part of supine yoga for ME sufferers. That’s called ME fatigue deary! To add some perspective, months prior to ME descending I had been out-jumping someone 10 years my junior at a party! Was working 30+ hours a week, walking our doggo everyday, running a home, volunteering, socialising and doing whatever else I could possibly fit in. I enjoyed living.
The meeting was probably the lowest point. My husband got me to the clinic. As ever worried about the impact. When summoned to the meeting room, my husband my advocate wasn’t allowed in. He had to wheel me in and leave me. Note here. When I first attended the clinic I walked in. On leaving I was wheeled out. Does that set off alarm bells? In fairness an OT had pleaded with me not to go. I wish they pleaded with me before I’d even signed up!
In front of me was a panel of three people. The clinic lead, CBT therapist and another Doctor I had never met before. I was grilled and interrogated, and quite honestly judged. For an hour. Bearing in mind *PENE is a huge problem for ME sufferers. And as I struggled to talk, listen, read or write. It was awful. I was dismantled by three people supposedly there to help me. I am still utterly disgusted.
Following the meeting, about 2 days later, we had to dial 999 for help in the early hours. I was blue lighted to hospital after paramedics had to come to our house in the small hours because I couldn’t breathe. Taken to hospital on oxygen by ambulance. Twelve hours observation, on oxygen and wired for sound on heart monitors.
I had to go to A&E two further times around that time as my GP was concerned about the possible need for resuscitation, which wasn’t available locally. More blood tests to check I wasn’t heading into cardiac arrest and more ECGs. Cheery eh..
The following week I was due an ME clinic appointment, but had to cancel as I was bedbound again, following collapse. We rang, thinking ‘oh, they’ll be concerned. They’ll offer help and support‘. WRONG! I was discharged from the clinic, minus explanation when my husband rang to change the appointment. I was too weak to speak. With them suggesting that ‘I could go back when I was well enough, it was a revolivng door’. Pardon? A revolving door that had spat me out. I was speechless. Hung out to dry yet again.
Note: This conversation was flatly denied by the clinic. Any failing on their part was flatly denied.
I still haven’t recovered from that setback, well relapse really. That was well over a decade ago. My husband had to take a year off work to care for me. And spent a further two plus years on a complaints process, which was fruitless. With volunteer representation from MPowhr advocacy. They were great by the way. But with no one on the medical side accepting responsibility or having the gumption to accept that the clinic was not equipped for my level of severity. Or having the gumption to put my needs above their reputation or refer me to a suitable treatment centre who could have helped begin to repair their damage. We were literally dumped. The Advocate convinced we had a concrete case, were astonished.
I had to call time on the complaints process as it was consuming our lives and going absolutely nowhere. We did contact a Human Rights Organisation with no response. The NHS decided it had reached a satisfactory conclusion. We beg to differ. We just couldn’t take any more.
And I am not suggesting that everyone in that clinic setting were awful. They weren’t. But they were ill equipped, untrained in the complexities of MEcfs, being directed by a theory that didn’t work. And that influenced every single decision. To be honest, the therapists seemed to lack access or approval to adequate tools. As if their hands were tied. The therapist who visited me left the service fairly early on to move on to pastures new. I don’t blame them. I would have.
With my husband dealing with a complaints procedure, caring for me, raising our children and trying to make ends meet. My GP finally referred me to a Neurologist. I have been on their clinic ever since. They offered without argument or debate to refer me to Queens Hospital Specialist MEcfs inpatient unit, led by Professor Leslie Findley. Finally. This was four years from initially falling ill. Four years!
After much cajoling, arguing, crying, shouting, and pleading with the PCT. With backing from my GP and local Consultant Neurologist. We secured two outpatient appointments at Queens Hospital Specialist MEcfs Unit. Two. How generous. They were like gold dust. Even though I wasn’t well enough to travel the 30 miles. I had to try. It was my one chance of recovery or at least hope of. With the backing of a local Consultant Neurologist asking if I was sure I wanted to risk it. Such a kind person.
On meeting with Professor Findley, Inpatient treatment was immediately advised. Finally, some help. The next fight began. We became on first name terms with the then PCT. Not in a fun way. I/we were made to experience the hell that was ‘Exceptional Case Panel‘ decisions. More than once. You are given a date that you will be discussed. And you wait. You await the letter, the phonecall. You have no representation. Just strangers discussing your life. Hoping the Specialists Consultants recommendations will be enough. Surely, they will be?
Letter after letter was sent by Professor Findley, his administrators, quoting NICE recommendations for severe and complex cases, from Neurology, my GP backing my need for the treatment.
Recommended in-patient treatment was denied, even though we had proven my exceptionality. Even though the unrevised NICE guidelines state that inpatient treatment can be necessary for severe and complex cases, which I was. That term ‘exceptional‘ by the way, is meaningless. It was a smokescreen to buy time or rather delay funds being used, or just delay as funds had been used or to simply gaslight a patient as the powers that be awaited the pre-determined closure of a unit, battling patients haven’t been advised about. My husband spent call after call on the telephone challenging the PCT’s decision. It all fell on deaf ears.
This was around the time that ME/cfs treatment funding was being slashed countrywide. Why not kick them while they’re already down! 250,000 sufferers left minus a treatment pathway. Dependent on finding a GP and hoping to be referred to Neurologists who cared enough to try to help.
The inpatient unit had been earmarked for imminent closure. The PCT knew this whilst we were fighting. Leaving countless patients devastated. This complete catastrophe of a let down. Where several people had been backing me and campaigning including Doctors, Consultant Neurologists, Advocacy, the local press & television, family and friends. With Professor Findley going on record on TV News, Radio and Printed News Media to highlight my case. My sibling had contacted local news media to highlight the shambolic way in which I had been treated by the original clinic.
We didn’t have access to social media back then. If we did, I certainly couldn’t use it. So we were left alone with in our time of distress. All hope of a future dashed. Professor Findley’s hands were tied. He put together a package of measures to help as best possible. Including advising commencement of B12 injections, which I continue to receive. As there was nothing else that could be done for a patient who couldn’t attend as an outpatient. I saw a Specialist OT privately, which my in-laws paid for. This OT put a detailed day plan together for me, with much detail about aids I should have been using, and which I still use, how to best manage my scant energy. The original clinic could have done that for me 6 years earlier, but no.
We Kept Fighting
I fought for whatever scrap of what would be available to me. The inpatient unit closed, paired down to a two person outpatient unit. I saw the new Consultant Neurologist there once. Very kind and ensured detail was again sent to my GP to back me. Sadly they were unable to see the outcomes of vital nerve tests. Ironically, carried out locally by a nerve test specialist from Barts. For Addenbrookes, who also couldn’t help. I also have BTOS. I am one in a million to have ME & BTOS. My exceptionality. Lots of people trying to help, but ultimately being denied the help that might have meant a better outcome than being homebound for the past 17 yrs.
It was chaos in the corridors.
I managed to secure funding for telephone Specialist Occupational Therapy. Only because the PCT knew they had let me down so badly. The OT had to be delayed, because I was too ill to manage the calls. That was it. I experienced further relapses during the process of OT which identified I needed to be more assertive. Thinking about it now, I think I had been pretty assertive or I wouldn’t have been speaking to them. There was unexpectedly a huge waiting list for the Specialist OT, because there was nothing else worth having. And there still isn’t.
This whole process took from 2004 to 2012. It’s now 2021 and nothing has changed, I still live with severe MEcfs.
The whole experience was a shambles. So many false promises, false hope, and false so called treatment. Which left me more disabled than when I’d started. We had to buy a wheelchair part way into GET. That was 15 years ago. I still need it.
My local GP and Neurologist picked up the pieces and did the best they could. They still do.
The deeply ingrained opinion that MEcfs is all in the mind is incredibly destructive. It is not a psychosomatic illness. STAT! The torment experienced from missing every day life, such as even doing the weekly shop, washing the car, cutting the grass, popping to see your mum for a cuppa, going clothes shopping with your kids, popping out to buy a paper, driving in a multi storey car park, going to the cinema, going to the post office, walking the doggo, is indescribable. Things that so many take for granted. No one would choose to live that way. No one.
During this time we had to sell our home and lived without central heating or reliable hot water for a year. We rent the home we used to own. Our children were approaching GCSE and A level examinations as our house was being sized up and surveyed for sale at reduced market price to a housing association. We continued to be punished. I was too ill to move home. It is a testament to our children that they have achieved so much in their young lives through so much adversity. As they dodged the phone calls from debt collectors and threats of reposession.
I can understand why my husband gets so annoyed about it. I’d be absolutely raging if he’d been put through that. But he lived it as well. He still does. He is still my primary carer.
Believe me when I say that GET has absolutely NO place in ME treatment. And CBT only if therapists are fully conversant with the limitations ME presents, and only if the patient can handle complex conversation which likely is not the case. CBT is not a treatment for ME, it’s a ‘management tool’ to help with adjusting to life with a chronic illness. A tool that should only be offered in that context, not for the purpose of shaming the victim or suggesting that it could be a cure inferring that ME is all in the mind.
Writing this quite honestly seems surreal. Would other conditions be treated in this way. I hope not. I also vehemently hope that GET & CBT will be phased out AND soon as treatments for MEcfs. The fight for publication of revised guidelines goes on as I write. And emotion is running high.
At times I still feel like I am having to defend myself. I looked back in the files of the complaints procedure. It made me shake just flicking through it. Did they think we pursued that for fun? It was horrible. The only person defending me was my husband, I was too ill to attend. I saw that the original clinic offered to take me back into their service after two years had passed. Were they crazy?
After some time Barts offered to reassess and formulate a plan, but wouldn’t divulge what the plan would have been. As one party would have been a physio not many guesses are needed. More GET. Surely, this is an admission that the pathway had failed? If someone had taken more time to assess me properly, it might never have needed to reach that point. My trust was completely gone. Vanished. It was agreed by Professor White when my GP spoke to him, that trust is key. Sooo, why not have backed Queens? Why not respond to my husband’s questions. Why not admit that the clinic got it wrong and another pathway would have been far more suitable? There are so many extracts from letters I would like to include. So many. It is all just a nightmare. And why I have written so little about it prior to this. I will now decisively box it all up in order and out of sight. It isn’t always out of mind, but I prefer not to look at it.
I am reaching the point of healing from the grief of that period of seven years within my 17 years of MEcfs. But I think that has taken more than another 7 years. And not that the remainder have been easy, they haven’t. There have been more tests, more A&E trips, more severe relapses (currently coming out of one) and more medication.
I am still severely affected, am still homebound. But I am nearing the point of filing the GET horrors as history. And the emotional pain that goes along with them, it is no where near as intense as it once was. That is what I call progress and for me that is my Christian faith speaking like a loud haler. #Blessed
I never thought I would be able to bring myself to write this, let alone publish it.
Thanks for reading.
*The MEcfs Clinic name and clinicians have not been named, because they were part of a complaint. Queens Specialist MEcfs Unit were not.
*The PCTs are now defunct. Disbanded by the current government. We put the flags out when that happened.
- PEM – Post Exertional Malaise
- PENE – Post Exertional Neuroimmune Exhaustion
- PVFS – Post Viral Fatigue Syndrome
- MEcfs – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
- GP – General Practitioner
- PCT – Primary Care Trust
- OT – Occupational Therapy
- GET – Graded Exercise Therapy
- CBT – Cognitive Behavioural Therapy
- BTOS – Bilateral Thoracic Outlet Syndrome
*Apologies if the highlighted text is distracting. WP edit seems to be having a blip.