Cochrane ME/CFS GET review temporarily withdrawn

As believer or unbeliever?

 

Not specified.

 

She's had our back in the cochrane showdown on twitter this weekend. So far she seems to be one of the good ones, or at least shows interest in what patients have to say.

 

She has also published with Brian Hughes. It would be interesting to meet her.

 

She looks like a very cool lady perhaps @Brian Hughes could invite her here too?

 

I would think that anyone with a genuine good faith interest in psychosomatic medicine would actually be very motivated in excluding research that is decidedly not about psychosomatic patients. I'm sure psychosomatic illness can be real, just not at the scale that are believed and that the biggest issue in the field is that false positives have made any research basically useless. I'd predict probably 99% are false positives. That's gotta be a concern for someone who would actually want to help.

Or maybe that's just me having too much hope in humanity?

 

Yep, I agree with this. And of course the dodgy psychs then shoot their whole profession in its collective foot, when they assert things are psychosomatic (psychogenic?) when they are clearly not. In truth this rogue element within psychiatry (be they clinicians or researchers), have not just harmed patients but their own profession - and society in general as a consequence. There are a lot of excellent psychiatrists and psychologists around, who are very dedicated and capable. But unfortunately there are also too many who are simply in the wrong job.

 

Yes, and we must not forget there are already psychologist involved and doing good things as well, they're not all bad. From top of my head:

Caroline E. Wilshire (first editor on the pace re-analysis), James Coyne, Brian Hughes, Leonard Jason (must have a decade of research?)

Maybe others? Common theme seems to be willingness to listen to and engage with the patient community (or patients at all)? unlike someone else....

 

Don't forget David Marks, editor of the Journal of Health Psychology, who not only published a journal just on PACE, but who has written articles himself criticizing it all.

Plus a number of people on this forum who are psychologists, but who feel the need (very understandably, but sadly) for professional reasons to keep that quiet.

 

A bit OT: Have psychologists been better than psychiatrists at speaking out about the problems around PACE? It seems like they really have, but I've no idea why this would be.

I don't know the details, but had heard that psychologists were meant to have been better than psychiatrists in speaking out about the mistreatment of GLBT people in the past.

Keith Laws. Umm... I'm sure that there are quite a few others. There are a few psychiatrists who signed Tuller's last open letter, but they seem to have been less involved with expressing concerns independently. Don't really know why I'm mentioning this, but just thought I would.

 

The earliest paper of Leonard Jason's that I can find on CFS is from 1993... so, he's been at it for at least 25 years.

 

A group of UK psychologists are arguing with RCPsych. about SSRI and withdrawal effects. The TODAY program had an interview/ argument between one of the psychologists and guess who....... Clare Gerada.

 

My personal experience is that psychologists have more direct contact with patients, and are quicker to recognize that there's nothing wrong with the patient that they can do anything about. Because they seem to have less of a god complex than psychiatrists they tend to assume (in my experience) that means they are not the right person to help. That might not get the patient any further, but they're not harmed either. They are not doctors, so they don't assume they know everything (mostly). Psychiatrists however... A generalization, of course. Good and bad egges on both sides probably.

 

My worry is the way round this is. I am sure there are real illnesses caused by strange things happening in parts of the brain. And those things are caused by other things of various sorts. But 'psychosomatic' is a theory and I have never worked out what that theory is.

Psycho is supposed to be mind, but most of us equate mind with whatever we know through our consciousness - sensations, emotions, logical thoughts. Yet the psycho in psychosomatic seems to imply something unconscious. What I am unclear about is what makes this 'mind' rather than, say, the workings of the hypothalamus that make you shiver when you have a fever.

It all seems to go back to Freud who seemed to suggest that there was an 'unconscious mind' just like the conscious mind but hidden from view, that also had emotions and thoughts. It made up dreams to tell the conscious mind what it was thinking. But my work on neurophysiology suggests to me that this makes no real sense. Freud was right to remind people that a lot of our decisions are made outside the realm of consciousness but his specific theories turned out to be make believe. I am not convinced that modern 'psychosomatic' theories are any better.

In the past I looked after a number of people whose illnesses seemed to be mediated by strange events in their brains. But I could never work out how these events would relate to 'mind' in any way that was at all credible. As far as I can see most people who talk about 'psychosomatic' illness do not bother to try and think through what the events would be in any terms precise enough to allow scientific, i.e. testable, analysis. When people like Trudie Chalder talk about mediation analysis it looks to me just hand waving.

 

A letter to the editor in a Norwegian news site about medicine.

It says that the withdrawal from Cochrane is good news for the patients, and it's strange it didn't happen earlier. Thousands of patients have suffered under the misconception that graded exercise and CBT had some effect on ME. This damage can not be undone. What's important for the future is to make sure this misunderstanding is removed, and then discuss how this could happen.

The National Competence Service must give updated advise. It might be necessary to replace some people in this service.
It is crucial to encourage patients to seek advice from patient organisations. It's obvious that the patients have a better understanding of their situation than some specialist environments. All cooperation with alternative therapists must cease to exist.

Sigmund Olafsen: En lettelse for ME-pasienter
google translation: A relief for ME patients

 

Some Scandinavians seem to be getting the message and tone right. Carol Monaghan might find this helpful.

 

Part 3, about the news articles in Dagens Medicin and Läkartidningen:

Pacegranskaren: Mycket känslor och lite vetenskap – igen
https://pacegranskaren.wordpress.com/2018/10/23/mycket-kanslor-och-lite-vetenskap-igen/

Google Translate, English ("Lots of feelings, little science - again")
https://translate.google.se/translate?sl=sv&tl=en&js=y&prev=_t&hl=sv&ie=UTF-8&u=https://pacegranskaren.wordpress.com/2018/10/23/mycket-kanslor-och-lite-vetenskap-igen/&edit-text=

ETA:

 

I'm finding it kind of funny, that once again the bps-crowd actually ends up helping us, I think, when they didn't intend to do so.

As the review actually isn't withdrawn yet, but trough their own actions they've drawn everyones attention to it, and that there may be problems with the evidence for exercise-based therapy for ME. And most reading these articles will think the review is already gone.

Whereas, had they just said nothing, they wouldn't have opened this discussion - and they've managed to get much more exposure to it than patients advocates could have managed on their own.


Am also wondering what's happening behind the sceenes now? Would think they are finally in dialogue with the reviewers? Can't imagine the cochrane editors are to happy about this internal affaire beeing dragged out in the media. Oh, to be a fly on the wall...

 

I do believe in the notion of the sub-conscious or unconscious mind, in an informal sense at least. There are so many times when I have been trying to solve a problem, and then the answer comes to me (or at least a new approach to finding the answer) when I am completely involved in something else, or am asleep. To the point now that if I'm really stuck on a problem I will make a point of getting involved in something else. I'm convinced there is some sort of background cognitive functioning, that conscious thought sometimes simply gets in the way of. But even if that is true, whether such cognitive activity can manifest itself in any physical phenomena, I'm not at all sure. But I am, as I try to always be, open minded. I would not have a problem if someone presented a good solid case for psychosomatic effects, but really cannot abide it when it is pushed as the cause of things it patently is not.

 

Yes, I would go much further and say all our decisions and inferences and novel ideas arise from unconscious brain computations. The fallacy I see is the idea is that there is an 'unconscious mind' similar to the conscious mind but hidden, like a ghost writer. Both are seen as 'agents'. So the 'unconscious mind' is theorised about by psychologists as if it 'thought' in a conscious way but without telling us and could be predicted to behave like a conscious mind.

I won't go into detail but from what I know about how the brain works I would say this is just a terrible muddle. There is a pretend that we can construct scientific theories about these unconscious processes when really we are just guessing whether Jane will like the yellow freesias or the purple ones best. And the horrific thing is that trained therapists are supposed to be able to make use of their understanding to tell people what causes what in their heads, despite the fact that at the very best the theories are backed up by loose statistical correlations.