Tuesday, 20 March 2018

The PACE trial - a complaint.

This is a tough read - I make no apologies for that. I felt it was important to share my experiences of how the PACE trial has indirectly affected me, and so the following is an excerpt from my letter supporting Dr Sarah Myhill's campaign against those responsible for the trial. If my story moves you in any way and you wish to help, please sign the petition supporting Dr Myhill's complaint, available here.


I first became ill in August 2011, when I came down with a nasty viral infection that lasted several weeks. I was diagnosed first with a chest infection, and then a sinus infection and although both went away with antibiotics my body never really recovered. I began to suffer with aches and pains all over my body as well as swelling in my hands and feet. I tried carrying on with daily life and going to work (I was an Infant School teacher) but eventually my body gave up on me. I was signed off work at the end of September and unable to do anything except lie in bed and sleep. Since then, I have not been well enough to work at all. My doctor diagnosed Post Viral Fatigue just before Christmas 2011 and then when I was still no better by October 2012, my diagnosis was changed to ME/CFS.

With regards to treatment, initially I was given no help or advice by my GP. I was left to get on with things myself, with no real idea what was wrong with me, or how I could get better. By November 2011, when I still wasn't able to go back to work, I was referred to Occupational Health through my employers and had to attend assessments at the Bupa Centre in Bristol. Staff there were very supportive and told me I had a very real, physical illness and that my best bet of recovery was to exercise, push through my symptoms whenever I felt bad, and to try to function as normal as best I could. Initially they thought that my health would improve within 'four to six weeks', which seems laughable now. They also told me that counselling and CBT would help, and as I had no reason to doubt their advice, and nowhere else to turn with regards to treatment or recovery, I took them at their word.

So, I undertook six weeks of counselling through BUPA, despite not really understanding why or how it would help, and I did my best to struggle through each day, forcing myself to go into the school I worked at in a voluntary basis a few hours a week so that I could keep up to date with developments at the school, and try to improve my cognitive processes and my stamina. This carried on for about a year and a half and was a living hell. I spent most of my time laid out on either the sofa or bed, suffering greatly from the effort of pushing myself through the pain. I kept a short diary for most of it to track my progress, and at some point bought an exercise bike because I kept being told by BUPA  'exercise will cure you'. During the summer Olympics 2012, I can remember watching events at the Velodrome for inspiration whilst peddling away to try and make myself better even though I would then spend the next few hours collapsed on the sofa, trying to recover. Eventually, things got to the point where I still wasn't fit for work so I asked for my GP to refer me to CBT. Again, another six week course of sessions followed, and although it helped me to cope with the psychological aspects of dealing with a chronic illness (grief, anxiety etc) it did nothing to ease my physical symptoms, and in fact, served only to encourage me to ignore my symptoms and use positive thinking/mindfulness to again try to push through my suffering.

By this time, my employers were understandably getting increasingly fed up at my long term absence. I was bumped up at BUPA to see a doctor, instead of the more junior advisors. Again, he was wonderfully supportive and reiterated that ME was a very real physical illness but this time, in contradiction to his colleagues, he told me that exercising and pushing myself were the worst things I could do. It was such a relief to hear that I didn't have to push my body any longer, but by then, the immense damage had already been done. I am convinced that the medical professionals I saw initially would have looked at NICE guidelines regarding my illness. Those NICE guidelines, based largely on the so-called evidence of the PACE trial recommended CBT and Graded Exercise, and so those professionals would have given that advice to me in good faith, expecting that anything recommended by NICE would be accurate, fit for purpose, and would therefore lead me towards better health. They truly believed that the advice they gave me would lead me back to wellness, and why wouldn't they? Why would NICE put incorrect and harmful advice on their website? It has to be because the research undertaken by the PACE trial showed that such interventions would be helpful - research that we now know to be extremely flawed at best, and purposefully untruthful at worst. 

It is shocking that it took nearly two years of illness for me to be seen by someone with a proper understanding of ME/CFS, who knew enough to realise that CBT and GET would not help me in any way. For there to be this disparity within the same medical establishment concerns me greatly, and I have to wonder how many other people were similarly affected. Perhaps if I had been given the correct advice at the start of my illness, I might be recovered by now, or at least be able to lead some semblance of a normal life. 

By now, BUPA had nothing more to offer me treatment-wise and my employers were unhappy that the situation was still no nearer to resolution. I felt I had no option but to resign from my job as I had not been well enough to teach for over a year and a half. It was at this point I asked my GP to refer me to the ME/CFS services in Bath. By this point, I was really struggling to even leave the house for medical appointments and when I was offered a place on their six week Fatigue Clinic, I raised concerns that I would not be physically able to attend and that there was a real concern that in doing so, I would make myself even more ill. I was told to attend anyway, even though I could easily have been given a place on the same course in the future. The implication seemed to be that refusal to attend for any reason, even due to my poor health, was seen as a refusal to undertake treatment and could therefore affect my chances of claiming benefits.


As I suspected, the effort of getting myself to the hospital and back once a week was too much for me. I was clearly the most badly affected person there, and it would take me the rest of the week to try and recover enough to attend the next session. Eventually, on top of the damage done by following BUPA's advice, it all got too much. I was unable to get to the final session, and then had a massive crash that worsened my symptoms to the point that I was utterly bedbound for over a year, unable to cope with any stimulus at all, forced to spend all my time in my dark, silent bedroom. It was a very dark time and I became too ill for visitors and couldn't leave the house, even for the 5 minute trip to my doctors surgery. 

I received no help or support from the NHS during this time. I was too poorly to attend ME/CFS services, and couldn't even manage a short phone call appointment with them. I expect I have been signed off from their books as it has been several years now since I last had contact with them. My GP has been emotionally supportive, and very helpful in terms of my benefits claims, but she has been totally useless in treating or even understanding my illness. If I raise the issue of a new symptom with her, she just shrugs and tells me she doesn't know what that is. There seems to be an unspoken implication that she doesn't believe my symptoms are as bad as I think they are, and that the pain I experience daily can't be as bad as I make out. The painkillers prescribed to me do nothing to lessen the type of pain I am in, and so I have spent the last few years learning to cope with my suffering and my limitations completely by myself. 

In short, I strongly suggest that the impact of the PACE trial is the reason why my illness has not been taken seriously by my GP, and also why I was initially given incorrect advice by BUPA, advice that actually made me significantly more ill than I was beforehand. I have had to fight every step of the way for tests, referrals, and for an MRI scan to rule out the possibility of Multiple Sclerosis. Even then, the Neurologist I saw was completely condescending towards me, implied that my illness was down to my own anxiety and hypochondria, then suggested I take up swimming, even though I was completely bedbound at the time. She even managed to 'forget' to forward my MRI request, so that my husband had to chase it up and my scan ended up happening over six months after my initial appointment. I attribute her attitude, and that of my GP to the way ME has been mislabelled as a psychosomatic illness, a mislabelling that the authors of the PACE trial have done their utmost to perpetuate as it backs up the findings that they erroneously claimed as a result of their trial.

At no point have I been offered any real, suitable treatment for my ME symptoms. The only time I get any real medical help is when I go to my GP with something unrelated to ME/CFS. It is a huge concern that any new symptom I experience could easily be passed off as ME and therefore dismissed, leaving me at risk of developing a secondary condition. I feel completely isolated, let down, and left to rot by a medical profession that should be helping me to get better, but have actually only served to make me far, far worse. It is perhaps telling that despite the harms done to me, and the disbelief I have encountered, I still consider myself lucky when I compare my experiences with those of other ME/CFS patients who have had even more horrifying and damaging encounters. It is almost four years since the crash I experienced as a result of following bad medical advice, and yet I am still housebound, still in pain and discomfort every single day, still severely disabled, and still without any treatment plan or medication, other than what I have managed to research myself through speaking to other patients online. My mental health has also been affected as a result of this. I now live in fear of having to see any medical professional, even my own GP. I fear having my benefits taken away like so many of my chronically ill peers, and there are times when my pain and suffering is so severe that I consider suicide as the only viable option. I don't want to die. There is so much more I wish to see and achieve in my lifetime, and yet after years and years of suffering in silence, there are times when all hope leaves me, and I consider how much easier it would be for myself and my loved ones if we didn't have this burden to cope with. Thankfully, those moments pass, but it is always a concern that one day, the pain might continue for just that fraction too long and push me to the point of no return. If this is lucky, I dread to think of the many sufferers in a worse position than myself. 

I can't help but come back to the line from the Hippocratic Oath, “I will utterly reject harm and mischief,” and wonder how those responsible for the PACE trial have been allowed to peddle their lies and mischief for so long, causing great harms to countless people like myself. It is scandalous that they have been able to get away with such behaviour, and indeed have been rewarded for it by the establishment. Lives like my own have been ruined by this travesty. Severely ill people have been maligned and ridiculed by a profession meant to help them. Many sufferers have taken their lives, unable to cope with the debilitating nature of our illness coupled with the devastating affect of being disbelieved about the severity of their suffering. It needs to stop and it is within your power to help make that happen. The PACE trial has been discredited for changing outcomes and fiddling with results, but yet still the findings are influencing the way patients are treated, not just in this country but also around the world. 


In this country, NICE are now in the process of reviewing their guidelines for ME/CFS, and I can only hope that they will listen to people with this illness and remove both Cognitive Behavioural Therapy and Graded Exercise Therapy from their recommendations. I feel they would be much more likely to do so if those behind the trial were held responsible for their actions. There needs to be a clear message sent that tampering with research outcomes at the expense of the severely ill is not to be tolerated. I urge you to uphold Dr Myhill's complaint and bring those responsible to task for the many lives that have been affected by their poor science.

2 comments:

  1. Oh my goodness, I could be reading about myself here. YOU ARE NOT ALONE.

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  2. This is a stunningly clear, detailed, objective account of the way the PACE Trial has harmed one individual. This represents the experience of thousands of people who have ME/CFS. It is a disease best treated with complete rest from the beginning, and if doctors were given this guidance, it would mean patients had a chance for improvement and even recovery - at very little cost to the NHS or the DWP.
    Hope I can include reference to this article in my own future writing, with gratitude to the author for her immense effort in producing it.

    Here are some examples of my efforts so far:

    http://www.positivehealth.com/article/cfs-me/lost-in-translation-the-me-polio-connection-and-the-dangers-of-exercise

    http://www.positivehealth.com/article/cfs-me/what-can-we-expect-from-the-current-review-of-nice-guideline-cg53

    The good news is that the Cochrane Review have removed the 2017 Review which supported GET. The Guideline Review people were counting on getting support from Cochrane as part of retaining the BPS model...now it seems they won’t.

    In my article below, I point out the enormous cost to the NHS of providing all the services for MUS (in which category they have put ME/CFS, fibromyalgia, IBS, and pelvic pain...so women with health problems would be foisted off to CBT/GET). Wessely is behind this, promising that it would save money, which it clearly wouldn’t.

    These guys get away with it on the promise of saving money. I’ve shown that they won’t. Dr. Myhill is trying the legal route...We must support her in that.

    Wessely and associates clearly are not moved at all by the fact they they are (knowingly...they can’t pretend not to know) causing immense damage and suffering to thousands of people. And not moved at all by the increasing level of scientific research showing the physiological nature of ME/CFS. (Being scientifically wrong doesn’t seem to touch them.).

    Hopefully pointing out financial fraud will have some effect, and successful legal action could have even more...we all are fighting together here.

    The account you have given here will give strength to our arm, congratulations and thanks.




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