Special Report - Online activists are silencing us, scientists say Reuters March 2019

Jonathan Edwards said:
The BPS model is a model of ME having a mental cause for continued disability. Not having ME I cannot be sure but I get the strong impression that this is just not plausible as an account of the illness.
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Knowing my wife for 30 years before her ME, and 11 years since, and of course the transition, I am absolutely certain her disability is not perpetuated by her beliefs, and never has been; quite the opposite in fact.
 
Jonathan Edwards said:
Schizophrenia, punch-drunk syndrome, Alzheimer's and bipolar disorder are all mental illnesses in the sense that they produce mental disturbance. However, none of them are thought to have a 'mental cause'.
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We have categories for such conditions and they are known as neurological and or neurodegenerative diseases. I understand that most logical people would not conclude they had a mental cause.

But why would anyone bring the word mental into the overall category labelling aspect. It just adds to the confusion and probably allows some level of double speak damage from certain psychologists or psychiatrists who would be more than willing to capitalise on such a concept.

As I said we have names for such conditions, we don't need to support the notion of a "mental illness but not mental cause" label.

A bad case of the flu can affect ones cognition and thinking but we wouldn't call the flu a "mental illness of non mental causation".
 
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Kalliope said:
The Reuters story has been picked up in Denmark. My impression is that some people prefer that this article isn't shared, so won't link to it.
The article presents the story as if activists have gotten the Danish Parliament (who recently voted for excluding ME from the umbrella term "functional disorders") to oppose science.

Professor Per Fink is interviewed. He says the activists are angry because he said some CFS patients can be cured. The activists thought that he therefore didn't recognise that the illness is serious. He worries for the recruitment of young researchers to the field, because it's so tough.

Most of his patients are happy with his treatment, which is CBT and GET. These treatments are the only ones with documented effect. He is shocked that the Cochrane review on GET and ME is temporarily withdrawn (according to the article). "GET is the most effective treatment we have, and I'm truly shocked that Cochrane lets itself be pushed by activist groups", Per Fink says.

"It is very problematic that politicians rejects the science and prefer to believe what comes from activists. It's a sign of fact denial", he continues.

He also tells about Unrest, that he was made into a villain. "They have used different pieces from different TV-programmes I've participated in, and put it together in a way that attributed lots of opinions I don't have".
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Somebody suggested archived versions be posted.

Here is the article in Danish:
http://archive.is/cAA29

Here is the Google translation:
http://archive.is/KVFJm
 
Jonathan Edwards said:
I don't really follow your arguments, @rvallee.
The problem as I see it is that so many advocacy efforts highlight the idea that this is a 'physical disease' rather than a mental one when we actually have no evidence to support that. Moreover they really bang on about it. My own thoughts about this is that from a medical point of view this distinction is pretty meaningless anyway. It would be entirely reasonable for the medical profession to ignore all the objections to PACE that it is based on the wrong theory on the grounds that the objections are confused and science does not work that way. Science goes for the theory supported by evidence, not the theory that looks right to start with.
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I tend to agree with this. I'm actually not a big fan of the ME Association's "It's real. It's physical. It's ME" slogan for those very reasons:
  • We should not imply that a mental illness is in some way 'not real' (I know this is not the case but it can be misread as so by the juxtaposition of the first two sentences);
  • We should not imply that our main concern is whether this is physical or not. Personally, I couldn't give a monkeys in the brain vs. blood debate, I'd just like somebody to demonstrate a pathology so that research can then focus on that. It's too easy to write off all complaints against PACE and similarly-flawed research as being patients not wanting to accept a brain-based cause.
The objection to trials that are based on the biopsychosocial model should never be, in and of itself, that they are underpinned by the wrong theory. It's that if said theory was actually correct, the results should have been so much more positive by now (demonstrate the patient's belief is false, get them moving, deconditioning falls away and hey presto) and much more in line with the successes of curing other phobias. And (more importantly), the testers' beliefs seem to have the unfortunate side effects of (a) not worrying about the potential for harm (how can you harm somebody suffering from little more than a false belief?) and (b) no need to worry about controlling for placebo effect, because when it comes to false belief placebo effect is a treatment in itself.
 
Barry said:
I think also that being fully unblinded, the participants would not just have been rating their own perceptions, but tacitly rating their therapists as well. So if the GET therapists were truly geed up about how good and beneficial their therapy was, participants would inevitably (even subconsciously) be rating it well.

Need to consider there is probably a very different therapist/patient relationship for behavioural remedies, compared to non-behavioural remedies. The behavioural remedy relies much more heavily on building a strong rapport with the patient (indeed I think the PACE therapist manuals allude to this), so the participant will come to have an almost friendly relationship with the therapist - it is actually part of the treatment. So it becomes harder for participants to 'mark down' their scores, knowing that in doing so they will be marking down their friend/therapist in the process; almost feeling disloyal in doing so.
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Not wanting to displease the therapist could easily explain any 'benefits' seen in PACE on its own, without having to invoke the placebo effect.
 
I think the best response to this 'Special Report' is for the researchers and clinicians who are being attracted to work in the field to simply say so, and describe their interactions with patients.

That alone would destroy the central claim underlying this whole article, and expose the real story, which is that the field is not being abandoned but that emphasis is (finally) shifting from the psychosocial to the biomedical.

That will then lead neutral observers to ask why.

And that is a can of worms the psychosocial set do not want opened.
 
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Monbiot asks: Why would people who are sick attack medical researchers investigating their sickness?

I don't take that question as necessarily being in favour of one or other side. It is actually a pretty neutral straight question, the sort of question one would ask when wishing to (legitimately) draw out responses to become better informed.

Monbiot is an experienced journo, who has dived into some very contentious issues in his time. He is not new to this kind of thing, and understands how debate can be easily skewed by powerful voices. He is also aware of the history of the SMC and the person currently running it.

I think it is worth trying to point him in the right direction, to at least hear the other side of the story.

Doesn't guarantee anything, but if any journo is worth taking some time to try and inform, he is.
 
Snow Leopard said:
It is notable that when people ask intelligent questions, particularly relating to ambiguities in his reasoning or evidence, he simply does not reply. But he does occasionally reply to the accusatory comments...
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It is quite clear that he is acting in very bad faith indeed. His efforts on Twitter, including selective blocking and non-answer 'answers', over the last year or so are nothing more than desperate trolling for bullshit examples of harassment/threats.

But he got nothing serious he could use, and a whole lot of people got to see him repeatedly avoid answering the legit evidence, arguments, and questions put to him.
 
Jonathan Edwards said:
Sir Simon Wessely, of King’s College London, said that he had also stopped researching CFS treatment after “relentless internet stalking”. One tweet accused him of playing “pathetic ego driven games” with the lives of people.

That's quite an amusing quote. Pathetic ego driven games would not sound too implausible.
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I might have said something along those lines, once or thrice.

Je ne regrette rien. :whistle:
 
Andy said:
where people, seemingly previously unaware of all of this, are saying, paraphrasing, "wait a minute, this presents only one side, I'm going to read up on the other side, oh, it looks like the patients may actually have a point".
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I think we are in that phase, where people with no history in the debate are paying more attention and coming to their own conclusions.

It was never going to end any other way. It was only ever a question of how long it would take.
 
Sean said:
Monbiot is an experienced journo, who has dived into some very contentious issues in his time. He is not new to this kind of thing, and understands how debate can be easily skewed by powerful voices. He is also aware of the history of the SMC and the person currently running it.

I think it is worth trying to point him in the right direction... if any journo is worth taking some time to try and inform, he is.
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I have contacted Monbiot, but I think I may have done before without getting a response. Just as I am puzzled by journalists not being bored with the Kelland approach I am puzzled that someone does not jump at exploring the wider ramifications of the story David has so far been telling on his own from a blogspot in New York (OK with Julie and one or two others but nobody on the regular outlets like BBC or Guardian). There is a 'Long Read' article sitting waiting to be written.
 
Jonathan Edwards said:
I have contacted Monbiot, but I think I may have done before without getting a response. Just as I am puzzled by journalists not being bored with the Kelland approach I am puzzled that someone does not jump at exploring the wider ramifications of the story David has so far been telling on his own from a blogspot in New York (OK with Julie and one or two others but nobody on the regular outlets like BBC or Guardian). There is a 'Long Read' article sitting waiting to be written.
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It has always surprised me as well. I wonder what the motivation for the journalists writing these article is. It seems strange that they would write such stories in an unquestioning and biased way - Kelland seems to have spent time on her article so its not just a rushed thing. It does make me wonder whether they are trying to spread a message of hate towards ME patients or whether they are just ultra loyal to their friends and can't see that their friends could be wrong (but then they shouldn't be writing about the subject).

There does seem to be a good story that someone could write not only about what has happened with ME research but how the power structures within the UK have allowed bad things to happen and defended them.
 
Adrian said:
I wonder what the motivation for the journalists writing these article is.
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I get the impression that these are sort of establishment intellectual groupies. In this case science establishment groupies. The odd thing in this case is that the 'establishment position' they are supporting has been unanimously trashed in the House of Commons in a cross party debate.
 
Adrian said:
I wonder what the motivation for the journalists writing these article is. It seems strange that they would write such stories in an unquestioning and biased way - Kelland seems to have spent time on her article so its not just a rushed thing. It does make me wonder whether they are trying to spread a message of hate towards ME patients or whether they are just ultra loyal to their friends and can't see that their friends could be wrong (but then they shouldn't be writing about the subject).
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I think the motivation is "The Science Media Centre have handed me this story and told me how to report it, which I am happy to do because; a) that's what I usually do; b) I want them to feed me more stories in future; and c) they might nominate me for an award if I do a good job."
 
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