I recently saw this slide being shared on twitter. It’s from a presentation by Peter White – a prominent psychiatrist who believes that ME (or CFS as is their preferred term) is a psychological condition caused and maintained by a patient’s false belief that they are ill, and subsequent physical deconditioning as a result of fear of activity. It’s a popular view as it places the responsibility to get better squarely on the patient’s shoulders, and shields doctors from any sense of failure or helplessness, and of course removes any responsibility from governments and insurance agencies to provide care, treatment or social support.
It’s so popular in fact that a great many people have built their careers and reputations on it, selling their particular treatment protocol to governments, healthcare providers and insurance companies the world over: Cognitive Behavioural Therapy (CBT), to correct the patient’s erroneous belief that they are sick and change their avoidance behaviour; and Graduated Exercise Therapy (GET), to build up activity and stamina. This provides those that want it with a cheap ‘therapy’ that can be delivered to patients, in some cases over the internet, and a promise that it is all that is needed to get a patient off sickness benefit, back to work or school and no longer needing to be prescribed expensive drugs and long term care.
There’s just one problem with it. It doesn’t work. Now the reason it doesn’t work is that it is based on an entirely incorrect assumption about cause. ME/CFS is not in fact a psychological illness, it is a complex, multisystemic physical condition that includes serious neurological and immunological malfunctions, amongst other things, and its cardinal symptom is an extreme physiological intolerance to exertion of any kind. In other words, over activity – or exercise – makes people with ME/CFS sicker. Far from being the cure, Graded Activity as set out in this protocol will exacerbate the underlying condition and make ME/CFS patients sicker.*
Not only is there a wealth of evidence that exercise will worsen an ME/CFS patient’s condition, the fact is that the psychiatrist’s own research fails to show any improvement under their protocol! They’ve worked extremely hard to hide this fact in the way that they design their research and fiddle their results – even going to the extreme of refusing to let anyone see their initial data until ordered to do so by a court. But thanks in the main to the dedicated work of David Tuller the world can now see what ME/CFS patients have known all along; they are simply wrong.
(Please see David’s work on Virology Blog for a full commentary on the issues around PACE and other trials, start here: http://www.virology.ws/mecfs/ )
So what do you do when the results of your research don’t bear out your initial theory? Do you revisit your theory, critique your methodology, challenge your assumptions, review other evidence that may point to an alternative theory? Or do you instead decide that the reason your protocol doesn’t work is because patients want to stay sick? Do you choose science or dogma?
Which brings me back to the slide above. Peter White was the lead author on a landmark study, called PACE, which was designed to be the definitive proof of the efficacy of their protocol – and by extension the validity of their theory of cause. It failed spectacularly to do what it set out to do, and after initially seeking to simply hide that fact, they are now seeking an alternative explanation as to why their treatment doesn’t work. Rather than accept that they might be wrong, they instead have chosen again to blame patients for their own misfortune. So according to this slide, we don’t get better either because we are deeply psychologically disturbed, or we’ve whipped one another up into a mass hysteria, or we just like being on benefits instead of working for a living – so mad, bad or lazy.
They’ve rather successfully laid the groundwork for such an outrageous claim by persisting in spreading the rumour that ME/CFS patients harass and threaten researchers as a matter of course, likening us to violent animal rights activists and climate change deniers. Never mind the fact that a judge dismissed these claims as spurious and wildly exaggerated after the researchers in question failed to provide any evidence of harassment beyond one incident of mild heckling.
As you can imagine this slide was met with outrage and criticism as it made the rounds on twitter, not because it’s a new accusation – if you’ve had ME/CFS for more than about 5 minutes you’ve come across these kinds of assertions many times before. But because we must challenge this damaging rhetoric every time it rears it’s head, precisely because it is so dangerous and because it is so deeply entrenched in our health and welfare institutions. Finally we are beginning to have a voice that is being heard beyond our small and isolated community, and as the fragility of their theories and dogma is being revealed, we must be quick to challenge each new attempt to undermine the progress we have made. They have power, reputation and money on their side, we have truth, integrity and science on ours. Ultimately I believe truth will win, but not without a fight. And as the pressure of evidence comes to bear on them, they are digging in and fighting harder and dirtier than ever before to maintain their status.
So when I saw this slide I wasn’t surprised or shocked, I was angry and I was frustrated but overlaying all of that I was surprised to find that what I predominantly felt was shame. Shame and fear.
I have had ME/CFS for about 26 years, and from the very beginning as a 7 year old child I had my truthfulness and integrity – even my sanity – questioned. First of all my symptoms were simply ignored or dismissed as I was told that if I just went to school I’d soon feel better, or that it was simply ‘growing pains’ that were nothing to worry about and I’d grow out of. I was asked if I was worried about anything, or if everything was alright at school and at home. When my problems didn’t simply go away, professionals started whispering about school phobia, and looking closely at my parents, munchausen by proxy flitted across the room, and we were sent to family therapy.
Time and again as the years went by, I was told there was no physical reason for my symptoms and I was variously accused of making them up, or of being emotionally disturbed. I was constantly encouraged to just try harder, do a little more, complain a little less and my word had less and less credibility to anyone who was supposed to listen to me.
I was put on antidepressants and antianxiety medications, I had to schedule and keep a record of all my activities and my life was scrutinised for my failure to make good decisions, to manage my energy or do what I should to get better, be normal.
I learned to stop telling people how I was feeling, to just get on and suffer in silence. I protected myself from their disdain by sacrificing my body, my health, myself. I smiled and said I was doing a little better, justified myself and proved I was trying. I even convinced myself at one point that they were probably right, that I really was that selfish or disturbed, that I would choose to put myself and my family – my wonderful, supportive, long suffering parents – through this hell, just to meet some deeply disturbed need I had, or simply for the sake of my own laziness. I dutifully took my medications, went to my therapy sessions and carried on studying and then working. I constantly berated myself for not doing better at my studies, working harder in my job, being a better friend or housemate. Every failure to be ‘normal’ and ‘well’ not a tragedy, but a damning indictment of my character, my integrity and my sanity.
Eventually, of course it all comes crashing down. First in my teens when I simply couldn’t meet the demands that school placed on me, and later in my early 20’s when the effort of continuing to work left me almost entirely bed bound in 2008, reliant on my new husband to help me to the toilet. I have no doubt that the years of pushing myself beyond my capacity, pushing and then crashing, pushing and crashing, have permanently damaged my body. I now live with a level of ill health and disability that would not have been necessary had I been believed and supported to give my body what it needed – rest, nurture and time to recover from whatever triggering factor had caused by initial onset. The likelihood is that my condition is now progressive, and whilst I may be able to slow its progress with careful management, I am extremely unlikely to ever recover.
Would I have recovered if I had been given the right advice from the start? Would my condition be less severe more than two decades later? Who knows. What I do know is that early intervention gives you the best chance of recovery, and I do know that when the condition was first documented in the 1950’s and total bed rest was the first approach, many people did recover, and dying of ME/CFS was unheard of. Now it’s estimated that only 3-10% will recover and the same proportion will die from the condition. Statistics will never tell you the specifics for an individual, but I know what I’ve put my body through over the years, and it can’t not have caused harm.
Nevertheless, it is not only the physical harm that concerns me. When I read this slide, as I said my first and deepest reaction was not of anger or outrage, what I felt was shame and fear. Deeply and paralysingly. I didn’t want anyone to see those words. I didn’t want anyone to know that that is what the ‘experts’ think of me. Suddenly all the accusations and suspicions that I’ve been subjected to over the years; by doctors and teachers, benefit assessors and employers, family and friends came flooding back, and it felt like every assault on my personhood that happened behind those closed doors, was being exposed. I felt vulnerable, ashamed and terribly afraid that now I’d be found out as the lying, manipulating, disturbed individual that I really was. After all, that’s what the experts say, and why would they lie?
I saw all these people retweeting and commenting and I wanted desperately for them to stop. Don’t tell anyone that, don’t plant the seed of doubt in any more minds, don’t expose me.
It was such a visceral reaction that it surprised me. Although the feelings weren’t new, for some reason this time they broke through my subconscious and I was aware of this reaction. I recognised the knot in my stomach and the cold dread that I feel whenever the subject of ME/CFS comes up around people I don’t know, or a new article is printed claiming that exercise and therapy are the cure. I want so much to stand up for myself and tell people what I know is true, but at the same time the fear and the shame paralyse me and each time someone questions the validity of my condition, or how I’m managing it, a little part of me curls up inside, hiding my shame and protecting myself again from their disdain and their judgement.
You may well ask the question, why are you ashamed when you have done nothing wrong? If what they are saying is wrong, then you have nothing to be ashamed of. You may even wonder if my shame is proof of a guilty conscience, that the shame itself lends credence to their words. All I can say is that shame is an insidious thing and that when you are shamed by someone or something over and over again, that shame sticks to you, whether it is legitimate or not. We feel shame when someone devalues us, dehumanises us. When we are treated as less than; less worthy, less honoured, less valuable, we internalise those things and the harm done by others becomes the harm we do ourselves. That’s why abuse is so terribly damaging, that’s why people are beginning to talk about this situation in terms of medical abuse.
So what do I do with this reaction. This deep fear of exposure and crippling shame. There is no quick and easy answer, I need time and love and support to heal, and I am extremely thankful that I have it.
On this occasion, my first reaction was simply to bury it – it’s what I’ve done before. When things get too painful I simply step away from the debate and don’t participate. I let others lead the charge while I cover myself. But I don’t want to do that anymore. I don’t want to continue to be complicit in the harm that they are doing. I don’t want to feed my shame by allowing the fear to control my decisions. I refuse to be ashamed any more. So instead I spoke to my husband about how I felt, I’m writing about it and I’m letting myself get angry. Angry with the people who have lead this attack on us, angry at the institutions who approved it to save money, angry at the bystanders who could have spoken up for us but chose instead the easy path, and angry at these people who are fighting to protect their reputations and careers on the backs of ME/CFS patients, and at the expense of truth and their own integrity.
I won’t stay angry forever, but sometimes we need anger to break the cycle. Sometimes we need anger to give us the courage to step out beyond our fears and risk exposure and shame so that we can regain the dignity that has been taken from us.
So here I am, lending my voice to the outcry. I will not be silenced any more, and if it costs me friends and allies – if they are swayed by the experts assertions, by the old adage of ‘no smoke without fire’, if even my own shame condemns me in their minds, so be it. They were never really allies at all. Because the people who are for me; the people who have always been for me; the people who never needed convincing of my sanity or integrity because they knew me and saw me; the people who believed in me even when I doubted myself; their faith in me cannot be lost. Their faith in me is what gives me the courage to say enough, and bless their precious, faithful, loyal hearts, they say it with me.
* If you’re interested in reading about the effects of exercise in ME/CFS, here are a couple of links, just to start you off:
‘ME stories: Graded Exercise Stories’ – patient accounts
‘The Harmful Effects of Exercise, GET and CBT’ – a summary of evidence
nb – I haven’t referenced every incident I have referred to, but David Tuller’s articles will give you a pretty complete commentary of much that I have referenced of the politics around the situation.
For anyone interested in the biomedical research that is happening around the world, take a look at the report of the latest annual conference hosted by Invest in ME:
You can also order DVD’s of the conference, and/or follow up by looking up the researchers work directly.