Discussion in 'General ME/CFS News' started by JohnTheJack, Aug 27, 2018.
Please put me on it. I don't see myself composing another one as well.
Excellent letter, and amongst other things very educational. Education you really would hope Fiona Watt would have already acquired, and which she clearly thinks she does not need - but clearly does.
Especially: "In other words, the subjective biasing that in most experiments we try to minimise by recognising our tendency to cherry pick was, in PACE, the intended mechanism of the treatment. This should have been obvious to psychologists!"
Maybe they have such great difficulty understanding that biasing of subjective measures is problematic because they've been taught that CFS is a magical mental condition where thoughts and beliefs create reality, and therefore biasing thoughts and beliefs is exactly what's needed.
It would be very embarassing to admit that the ones fooling themselves are the scientists, not the patients.
While I can understand that it's more important to focus on methodology rather than the ideology behind CBT/GET, I still feel that PACE authors are promoting a (disguised) all-in-the-mind narrative despite not having any evidence it's true and that this has been extremely damaging to patients in many ways. Unfortunately this kind of harm is hard to show clearly and to quantify. The CBT/GET people have just agreed to pretend it's not an all-in-the-mind narrative for PR purposes.
Many healthcare professionals basically believe CFS is a condition where patients imagine to have an illness but don't, thanks to textbooks saying the condition is perpetuated by thoughts and behaviour (one recently discussed chapter on CFS was authored by Sharpe). This is basically the same thing as saying it's all in the mind. The CBT/GET people are the source of this idea! No one else is promoting it.
The resulting attitudes then trickle down to the rest of society and creates many situations where patients are mistreated, belittled, neglected. This happens at various levels: in interactions with other people (including friends and family), in legal disputes, in research funding allocation. This damaging narrative is how stigma and catastrophic neglect on a large scale is created, and the CBT/GET people are vigorously promoting it.
So I disagree with the idea that patients who criticize PACE because it suggests CFS is all-in-mind are misguided. I can hardly imagine a stronger statement about CFS being all-in-the-mind than saying patients can recover completely with CBT/GET merely by working on their beliefs. On the contrary, patients who point this out are much like the little boy who pointed out that the emperor was naked. It is hard to accept that psychiatry has engineered a public health disaster. There doesn't seem to be any evidence that medically unexplained symptoms, somatoform disorders, conversion disorder and the like really exist and are caused by psychological factors. The illness beliefs narrative of CFS is just one variation of the same basic idea, psychogenic disease causation, which is never questioned and never adequately tested. It's all just a belief system, for which patients pay a heavy price.
Am I being unfair to extend my criticism to the field of psychiatry rather than just the CBT/GET people? I think not because the rest of psychiatry has failed to stop them and has embraced the claims of somatoform disorder, psychogenic illness, and so on. At the very least, they're looking the other way while innocent patients are abused with nonsense treatments and unpleasant things like accusations of Munchhausen per proxy merely because the child doesn't respond to a placebo therapy.
What japes from the MRC. Chronic fatigue conflated with ME again in their mindless babble. What about the hostility and neglect ME patients have faced for decades? I'm sorry but these people - the whole PACE cabal - are evil, there is no other response.
It's the problems with PACE that are as much psychological as mathematical, not the statisticians.
I think by this @Jonathan Edwards means the problems with the trial are very much around the embedded psychology within it, whereas the statisticians are much more likely to pick up on the straight mathematical problems, without fully appreciating the problems with the psychology.
This of course is very true, but unfortunately overlooks the obvious - respect has to be earned, not doled out on demand. The PACE authors and BPS crew simply have not earned that respect unfortunately, all they ever seem to do is demand it.
Edit for clarification: The sort of respect in play here is respect for people's behaviours, competencies, ethics, etc. Not the other meaning of respect, where it means respect for basic human rights.
Yes, I was taught that long time back. Reader comprehension drops off rapidly once a sentence exceeds a certain length, no matter how good its content. Much better to break down into shorter ones. If you really think it doesn't quite work, then semi-colons can sometimes help if used sparingly.
They have earned total *disrespect* for their appalling behaviour and also now for trying to keep this hostile patient narrative afloat. They have nothing else, of course, so they scrape, scrape, scrape the barrel. It's truly horrible.
Please add my name: Peter Trewhitt
[added later: just saw the cut off time, so sorry if I was too late to be included. Thank you @JohnTheJack For taking the trouble of trying to herd cats and pulling this letter together.]
Whether campaigning against PACE is legitimate or misguided depends on whether PACE is good or bad research. Same argument applies to complaints to authorities.
There is nothing bad about admitting that we are campaigning against PACE, or campaigning against the notion that ME/CFS can be reversed by changing thoughts and engaging in graded exercise. We have solid arguments for our positions and our opponents do not, but they will gladly take the opportunity to publicly define our campaigning as misguided (if we let them). So let's not allow them to manipulate us into trying to downplay the fact that we are campaigning.
That they try to attack the campaign means they perceive it as a threat. So we must campaign harder and find more signatories.
Oh b*gger, missed it. In truth my qualifications are extremely modest by comparison with many here, so would likely have diluted rather than reinforced.
No, I suspected some may, so haven't sent yet. Still time if you let me know full name to be used (could message me in private, if you want).
Yes, I think this is the final hurdle. The really importantly placed people who will continue to support PACE because they get directly from the horses mouth all the details of why it is a good trial without going to the work itself or any of the papers written on it to decide for themselves. These people will believe everything they are told because they are being told it by people just like them -- people of advanced degrees and special knowledge. And they will be told in the most engaging, disarming way and most sincerely. How could they believe otherwise.
I'm also of the opinion that since it's a private conversation that the BPS persons will not hesitate to lie if that's what it takes should one of their quarry choose to ask probing questions. But the lie will be slippery and hard to pin down. A lot of ambiguous language will be used.
This is the route we are going and why there is such cognitive dissonance.
Fatigue in MS reframed per PACE paradigm
Separate names with a comma.