Trust issues run through every level of the ME experience.
Being unable to trust our physical bodies to perform, is just the beginning. Trust, in the context of ME, goes way beyond personal, physical problems. The problem of trust, runs right to the top of our medical establishment.
To put things in context, I'll start with a little of my own story.
Before ME, I trusted that my body would heal. Sure, a couple of weeks off work with a bug could be miserable, and the few weeks after returning to work might be tough, but I always expected to become fully functioning again.
So in March 2012, when I became ill, I simply trusted that I would recover, and if necessary, that the health services would help me to do so.
I went to the doctor, first just to get the necessary sick lines, and then with increasing frustration. The doctor told me I probably had "chronic fatigue", and that I should eat well and exercise. "Three short brisk walks a day" she said.
I trusted this advice from my doctor. I had no reason, then, to doubt.
The exercise didn't help, of course. In fact it made me worse, but the doctor suggested I should continue. And here trust rears its head again, because my doctor trusted the guidelines from NICE, that she had read, and I in turn was supposed to trust her.
My doubts started.
So I went to the internet, and other patients told me a different story. "Exercise can harm you!", "Don't do it!", and "Please be careful!" were the amongst the flood of messages that came my way.
A few months later, I saw an NHS consultant at a Fatigue Clinic in Belfast. Here, after a plethora of blood tests, I got some good advice: "Do only 60% of what you can do without symptoms" he said. But I got no diagnosis! With hindsight, I suspect this was so that I would not be pushed into Graded Exercise Therapy.
Did this consultant not trust other doctors to recognise my problems with exertion?
Gradually, I withdrew from NHS care. The clinic offered me no further treatment, and a return to my doctor, only left me with antidepressants or cognitive behaviour therapy as options. I knew that neither of those would help, and thankfully had the courage to say "No!" despite feeling almost desperate enough to try anything!
Next I had to run the gauntlet of the miraculous recovery stories told in the press. Reading these, it would seem to the ordinary person, that recovery from ME should be easy. Just try this miracle process, pill, or potion; say a few magic words; think positively and all will be well. Easy! "What harm can it do to try it?"
No wonder ME is not taken seriously by the healthy world at large.
Healthy people say things to us like: "We all feel more tired as we get older you know", or "Everyone has to push themselves to get things done", and in so doing they attempt to normalise a disease that is far from normal. I have heard many ME patients say, that those around them don't believe they have a serious illness.
So why are first-hand stories from the chronically ill not trusted?
This issue goes well beyond ME, and suffice to say that the media have cashed in on the "scrounger" narrative to try and imply, that all those who are long-term ill are actually just malingering.
Sadly the even medical establishment now uses, Medically Unexplained Symptoms (MUS) to label patients who seem not to respond to standard treatments. The suggestion here is, that these supposedly attention-seeking patients, should be diverted to psychiatric services, and that doctors should stop trying to seek physical explanations for their condition.
This is a tragedy in the making, and in my view everyone, including the currently-healthy, should be very distrustful of this label.
Back to ME now.
The current NICE guideline for "CFS/ME" shows that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) are still recommended.. These psycho-socially based therapies come with no caveat to indicate that many patients have reported them to be harmful.
Can we not even trust NICE to listen to patients?
NICE say they are listening. Last year they indicated that they would not be reviewing the CG53 guideline, but after an outcry from patients, they agreed to review it, afterall. So far so good, but patients are still very concerned by the processes NICE will use, and whether NICE will be genuine in taking on board the concerns of ME patients.
I have to wonder if NICE are swayed more by authority than by clear scientific evidence?
The PACE Trial (from 2011) was supposed to be the definitive trial to demonstrate whether the psycho-social therapies of CBT and GET were useful. The many problems with the PACE trial are well documented elsewhere, and those problems are so scientifically shocking that the PACE Trial should now carry no authority whatsoever. Yet, the PACE Trial authors continue to assert that these therapies work, and that no harms were found from their use.
Do NICE simply accept these assertions on trust? Have they not investigated the flaws of the PACE Trial for themselves?
Funding bodies also have a problem with patient trust.
These organisations are supposed to choose the best research projects to fund. Yet, it seems that psycho-social researchers are the only ones to receive the bulk of government funding.
Do we really want yet more behavioural studies, whilst patients are dying in darkened rooms from severe ME?
???
There is so much more that I could write about "trust" and the treatment of ME, but I'll admit my spoons are now running low. I will end by saying:
The days of blind trust in medical expertise are over.
My trust is now placed in those who are prepared to take on the system; to hold unsubstantiated assertions to account; and to campaign for the massive paradigm change that is required to ensure ME patients world over are treated fairly, and safely.
My message to anyone with medical influence:
Do not ask us to trust that things will now be done right.
Instead demonstrate your determination to right the wrongs inflicted by a misplaced trust in the psycho-social paradigm; by facing those difficult decisions; and by finally overturning the utter neglect of decades past.
Thank you.
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PS I have intentionally not referenced this piece so that it can be read easily. For more information I recommend the writings of David Tuller on Virology Blog, and the patient discussions on the forum Science 4 ME.
