I think there is a problem with patients not being listened to. Patients have a unique perspective steming from their actual experience of this disease, and any treatments.
Why do I have a very strong view about GET? Because I have tried it. It made me significantly worse and there is no doubt it was GET that caused that damage. Having experienced that, I then researched it and found that actually there isn't any good evidence for it being effective, and there is evidence that it can cause damage, as it did to me.
I then thought, why didnt the therapist warn me of the risks? Reviewing all that is claimed about GET, I concluded it was because the therapist simply had bought into it, and really believed it would work and would be good, and that any claims of negative reactions must just be the lies told by some patients who are anti GET for some obscure reason that no-one understands.
I see this as a problem.
I've also had CBT, but I was fortunate that the psycologist was brand new to ME and I told her I only wanted a few sessions to help me come to terms with being so seriously ill. I am not anti-CBT by the way, my parents are both therapists, my mother runs a family therapy team under the NHS and my father trains social workers and is an expert witness in court cases regarding child protection. They also both offer private therapy and use CBT.
But they say themselves that the idea of CBT working for ME is just plain stupid.
So patients like me are actually objective, it's just that we're right and have experience that doctors who aren't sick with this disease will never have. And we're sick of people saying we're wrong.
From the patient's perspective, havign ME is just as obvious and the same as if we had Ebola but were being told GET and CBT will sort it. It's just plain wrong. Obviously wrong. And while that's happening proper work to figure out what's wrong is supressed. It is an incredibly frustrating place to be. And so you do see patients being quite vocal about GET and CBT being crap, but it is because we are right and we ought to be listened to.
Do patients over-support biological models and interventions?
Perhaps, but I think that happens more with patients who havent had it so long. Patients learn fast.
I tried methylation first when I came here and at first seemed to get a small boost from it, but basically I concluded it was just over stimulating things and then wore off. I expect a well person might have got the same bonus for a time. So you learn from trying and you learn from studying, and a lot of us study hard.
From my point of view there is also a tactical element.
Because there is little biological research in ME/CFS and there are much easier diseases to work on, more rewarding for sure, this means firstly that its important to support researchers who do research even if they arent maybe looking in the right place.
Researchers learn too, and later they might persue a more promising avenue. Also, you can't be certain where the answer will lay, the cause of ME could surprise us one day.
Second, a lot of the research is just pilot stuff because of lack of funding and so you get small sample sizes, which doesn't result in a big finding, may be no finding at all, or may be something important. You can't know. But its really important to support this work because it could be the start of something.
So personally I praise such work more than it perhaps deserves, I am optimistic about it, because I think that is likely to help push things forward quicker and get us where we want to be, all the time stating what we need next, which is lots of good ideas being explored with well designed studies, with good sample sizes and so on.
Treatments based on such early research though is risky and probably not a good idea, but it is every individuals choice which I suggest they should make after researching as much as possible.
Edit: one last thing to add is that although methylation wasn't the answer for me, it apparently works for some and who would I be to dismiss it entirely. Maybe it does work for a subgroup of patients. Everything is somewhat open until good research can narrow things down and rule other things out.