Nature: A reboot for chronic fatigue syndrome research

they frequently accuse us of doing to them the exact thing that they do to us. i don't know for certain why bad guys use that tactic.

the only accurate term i know is "no, that would be you". but i want a formal name for it. more accurate than tu quoque or projection.

 

LOL. Homeopaths should try it.

Less ammusingly, it rather reminds me of some other arguments I've heard recently to try to limit criticism of junk-science.

 

Although it is obvious to us that the Cochrane reviews quoted are meaningless because the studies they review are meaningless, as long as they stand they form a potent debating point for audiences that won't look beyond the Cochrane name. They need to be exposed for the shite that they are. (I don't understand how unblinded studies with subjective endpoints rate as having low probability of bias.)

 

the "stigmatising" research is a deliberate strawman/mischaraterisation. We aren't critical because it's psychological research, we're critical of psychological treatments because they don't work. Answering differently on a self report questionnaire because you are more optimistic is not the same as improved functioning as measured by neuropsychological testing or actigraphy or 2 day exercise test (measuring the unusual drop in ventilatory threshold).

 

Cochrane allows random people to set up groups which review categories of conditions. Cochrane's Mental Health group which reviews ME/CFS was set up by Simon Wessely, and it sounds like it has typically included psychosomatic CFS researchers.

So the problem is that Cochrane seems to have no concern with reviews not being truly independent or objective, or even intelligent - unless it harms their reputation to the extent that they can't continue ignoring it.

 

I had no idea this could be the case; I assumed Cochrane actively commissioned people. So does this mean a group could set themselves up to perform a a review from a biomedical position and offer themselves and be accepted by Cochrane? What would prevent that?
Apologies if it's a stupid question, I don't know how this all works.

 

That's a very good question I think the answer is "probably not". The Cochrane document about changes to the review groups says:

That seems to suggest that agreement from the competing group is required, which is never going to happen with the quacks running ME/CFS reviews. It's probably necessary to focus on getting Cochrane to pry ME/CFS out of the mental health group's clutches before another group could have a shot at it.

But currently, it looks like the first group to lay claim to a disease effectively blocks any other teams from reviewing it. I'm getting the impression that Cochrane has some major structural flaws which make satisfactory resolution unlikely, so it's probably more productive to argue that Cochrane reviews lack actual standards, despite the lip-service given.

A somewhat related problem with Wikipedia treating Cochrane reviews like messages from the heavens may be due to it having financial ties with Cochrane:

 

I don't know if this is off-topic, but the question occurred when reading. Is there a possibility to show the low-quality of most of the psychological papers, e.g. about ME (but I guess it's low-quality in other areas except propaganda, too) in one go? I.e. not analyzing one after the other, but making an overall analysis of all? E.g. one could use randomization, pick a certain number of papers, analyze them for basic scientific methodology and try to use interference. Or would that be an own goal?

 

Thanks @Valentijn.

 

A million times this. Show me that CBT/GET works on a well-characterised group of ME/CFS patients with objective measures of long-term health benefits, low drop-out rates and decent evidence that it doesn't have risk of long-term exacerbation of symptoms, and I'll sign up tomorrow.

I don't object to the characterisation of ME/CFS as a psychiatric illness because I think there's any shame in having a mental illness - there isn't - but because there's increasingly good evidence against that hypothesis and because the evidence that psychological treatments work for ME/CFS is all fatally flawed, and flawed in the same way. The fact that the proponents of these studies haven't tried to address these flaws in future work but have instead resorted to putting all criticism into the 'abusive' bucket suggests that they don't have much confidence that an unflawed trial would back-up their original studies (and the objective measurements taken during the FINE trial seem to demonstrate as much).

Furthermore, the underpinning view that this is 'false illness belief' frees up the practioner from considering whether their proposed intervention might have nasty side effects and whether a positive result for any old nonsense therapy might indicate that the trial design is flawed. In other serious illnesses, I doubt one could get ethical approval for testing homeopathy/crystal healing/rhythmic chanting on children and, if one got a positive result, most journals wouldn't touch with a proverbial bargepole because a supposedly positive result would lead peer reviewers to forensically probe the trial design for reasons it might give a false positive. Only if one believes in 'false illness belief' could one look at something that is alleged to involve asking MS sufferers to jump around shouting 'I'm strong like a tree' and think that would be a good treatment to test on kids. Same for getting ethics approval and final publication.

Beyond that, however, I don't really care around whether the aetiology proves to be 'mental' or 'physical' in nature: Like most patients I'm only interested in what works. Hence why I'm a little wary of making statements like 'this proves it's in the blood not in the head'. If tomorrow there was good evidence that ME/CFS was caused by neuroinflammation (rather than, say, due to metabolic issues) you'd hear no complaint from me even if it meant some then viewed this as proof it was 'all in the head'.

As a community I think we need to be very clear when somebody accuses us of just not wanting to accept the possibility that ME/CFS may originate in our heads. For me, personally, it is false illness belief and exercise therapies based on this hypothesis that I do not accept and I do not accept these because the evidence for it is so poor. Show us a treatment with good evidence that it works and most of us will accept that regardless of the aetiology it implies.



ETA: was it the FINE trial that showed no decent effect on employment/health usage etc? Or, on second thoughts, am I confusing my trials?

 

It applies to every trial which used objective measurements, aside from a couple early Oxford ones where they were a lot more blatant about using physically healthy patients. My favorite is Wiborg (2010), which was a review of three Dutch trials involving actometers. No improvement in actual activity levels, despite self-reported improvements in fatigue. It's probably the paper which scared the PACE authors off of using actometers.

 

This reply by Sharpe and Chalder and Stone is just chilling. Still championing GET/CBT when PACE is dead in water and the lived experience of pwME contradicts everything they claim. I see their rhetoric as a kind of medical violence - to keep the GET/CBT nonsense going, whatever the human cost.

 

their reputation is their risk. a blog post on their ... sloppiness would get many readers. add to the already /enormously/ scandalous conflicts of interest. write a few pieces here and there in the science reform community -- even blogs are fine -- and cochrane's reputation can in principle plummet overnight. it can go viral. they will have to act to stop the damage. perhaps by retracting their endorsement. can they retract papers?

cochrane's at-best sloppiness is absolutely not acceptable in medicine.

btw does wiley have any misopathic properties they are trying to protect? just wondering. this isn't postmodern minoan art theory. this is medicine.

now what was i actually /going/ to say? oh right.

> Show us a treatment with good evidence that it works and most of us will accept that regardless of the aetiology it implies.

this is true.

but of course can only be a rhetorical demand when applied to the entities that have no interest in doing that. their interest is in doing the opposite.

demanding [non-rhetorically] that they respect science would be less rational than demanding that a lion become a vegetarian. you can probably concoct vegetarian lion food.

 

I think Tuller intends to fasten his gaze on Cochrane doesn't he? Given he now has access to quite a wide spectrum of academia worldwide it might prove an interesting ride for us and an especially bumpy one for them.

 

I don't accept any "psychological diagnosis" - I don't believe in its existence - and I don't want to be put under a 'community umbrella' that, in principle, accepts the possibility of ME 'being in the head'. I am totally fine if someone personally has another opinion.

I am also fine with most of the accusations of the psycho folk. I heard weirder stuff from a certain religious group, and I know that their beliefs are only beliefs.

 

Does this suffice for scientists as proof for low-quality? (I don't mean psychologists; they obviously love their publications and view them as scientific.)

 

Too many academics are doing the same thing, and doctors, but are they scientists? Scientific methodology has to be sound for a study to be seen as sound. Accepting lower quality studies only highlights how unscientific the process is.