Which Cochrane Review Group?

Although Cochrane put no timescale on deciding what to do about their Review of Exercise in relation to CFS in their update at the end of November indicating that the authors' rewrite had been rejected, they did more concretely state:

Obviously we feel all it very important for the future of the GET Review, now agreed by Cochrane to be inadequate, though it remains on line, and of the very dated CBT Review that ME/CFS is no longer housed in a mental health category. They seemed to promise a decision on this by the end of 2018.

I have been looking today to see if there has anything further posted online but so far have not found anything. However I do not find the Cochrane site easy to navigate in relation to their notes and news items, which can drop down into subsections at the bottom of pages.

Has anyone else had any better luck in finding out more?

 

No, I've been keeping a weather eye open. I suppose it's possible they did make a decision by end 2018, but just not got around to publishing it yet. Maybe.

 

I have been looking at the various Cochrane Review Groups to try to make my own mind where I feel we would best sit.

There are eight main groups (see https://www.cochrane.org/about-us/our-global-community/review-group-networks ):

• Acute and Emergancy Care
• Brain, Nerves and Mind
• Cancer
• Children and Families
• Circulation and Breathing
• Long Term Conditions and Aging
• Musculoskeletal, Oral, Skin and Sensory
• Public Health and Health Systems

We are currently housed within Brain, Nerves and Mind (see https://brainmind.cochrane.org/cochrane-brain-nerves-and-mind-groups ) which in turn is subdivided into nine subsections:

• Common Mental Disorders
• Dementia and Cognitive Improvement
• Developmental, Psychosocial and Learning Problems
• Drugs and Alcohol
• Epilepsy
• Movement Disorders
• Multiple Schlerosis and Rare Diseases of the CNS
• Neuromuscular
• Schizophrenia

We are in the Common Mental Disorders subgroup (see https://cmd.cochrane.org/ ). Their web page is where the news about our possible change of group sits (see https://cmd.cochrane.org/news/cochrane-considering-repositioning-chronic-fatigue-syndrome ).

If the WHO categorisation of ME/CFS as a neurological condition is taken as correct, presumabably we should be looking at a hosting in a more relevant subgroup within the Brain, Nerves and Mind section though it is not obvious if either MS and Rare Diseases (see https://msrdcns.cochrane.org ) or Neuromuscular (see https://neuromuscular.cochrane.org/home ) are perfect fits. However if we take the American NIH description of ME/CFS as a multi system disorder it may be appropriate to consider Cochrane's suggestion of Long Term Conditions and Aging (see https://longtermageing.cochrane.org/ ), which in turn is subdivided into five sub groups:

• Hepato-Biliary
• Inflammatory Bowel Disease
• Kidney and Transplant
• Metabolic and Endocrine Disorders
• Upper GI and Pancreatic Disease

with only Metabolic and Endocine Disorders (see https://endoc.cochrane.org/ ) looking a reasonable option.

 

Probably what matters most to us is the caliber of the individuals with power over the group. If the people in charge had a history of standing up to powerful figures and challenging poor quality work that served the interests of researchers, that would be good news regardless of the label applied to their group. Anyone know any of the individuals running these groups?

 

I foolishly started responded @Esther12 comment on what was important was the calibre of people of the decision makers, by compiling a list of those involved, but it is quite long and possibly not very helpful as it is not immediately clear what the various roles involve:

• Brain, Nerves & Mind - senior editor Christopher Eccleston
• Common Mental Disorders - editorial board: Rachel Churchill, Co-ordinating Editor (UK), Sarah Hetrick, Co-ordinating Editor (NZ), Nick Meader, Senior Editor (UK), Peter Coventry, Feedback Editor (UK), Jess Hendon, Managing Editor (UK), Sarah Dawson, Senior Information Specialist (UK), Lindsay Robertson, Systematic Reviewer / Senior Contact Editor) (UK), Steph Sampson, Systematic Reviewer (UK), Noortje Uphoff, Systematic Reviewer/Contact Editor (UK)
• MS and Rare Diseases of CND - editorial team: Graziella Filippini, Co-ordinating editor (Italy), Liliana Coco, Managing editor (Italy), Andrea Fittipaldo, Information Specialist (Italy), Loredana La Mantia, Quality advisor (Italy), Silvana Simi, Plain Language Summary Writer (Italy), Irene Tramacere, Statistical advisor (Italy)
• Long Term Conditions and Ageing - senior editor: Cindy Farquhar
• Metabolic and Endocrine Disorders - editorial board: Bernd Richter, Co-ordinating Editor (Germany), Bianca Hemmingsen, Deputy Co-ordinating Editor (Denmark), Patrick Manning (New Zealand), Didac Mauricio (Spain), Victor Montori (USA), Peter Sawicki (Germany), Norman Waugh (UK)

On top of those named above there are various consulting editors named for some of the subgroups who seem to be academic specialists.

Another approach to deciding where ME/CFS might belong would be to consider the other conditions we would consider most relevant to be housed with us?

 

Thanks for that @Peter Trewhitt - I really should have started doing that myself.

I had a very vague memory of reading stuff I didn't think was good from Christopher Eccleston.

A quick google showed him promoting Wessely, Knoop & PACE in a chapter on CFS:

https://books.google.co.uk/books?id=G7gBCwAAQBAJ&pg=PA119&lpg=PA119&dq="Christopher+Eccleston"+"wessely"&source=bl&ots=-4kBB96hV-&sig=5vQ3soSbyjPgDkSG6VGM0SGs6R0&hl=en&sa=X&ved=2ahUKEwjkqceP6s_fAhUj0uAKHa8hCGYQ6AEwBXoECAgQAQ#v=onepage&q="Christopher Eccleston" "wessely"&f=false

Safe to say that we do not want him having any power over us.

Edit: And to add that this Ecclestone paper on the DWP's introduction of 'fit notes' seems to follow some DWP spin, and is another reason to not want him involved.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3223777/

edit 2: There's also this paper on fit notes I've not read yet: https://academic.oup.com/occmed/article/63/7/501/1454010

I can assume people from outside the UK would be better for us.

 

Given that so little is still known about ME, it is probably easier to identify the groups / sub-groups that ME does not belong to, than precisely where it does belong. One thing is absolutely for certain though: ME does not belong in Common Mental Disorders! That alone illustrates everything that is wrong with current approach to ME - it quite literally adds insult to injury.

 

I get the impression that there is no place in the Cochrane structure for an illness where so little is really known about it's cause.

 

Dr Who?

 

Up until now it seems there has been - just follow the BPS line and classify everything and anything not yet understood as a mental disorder. Suits money-conscious politicians, empire building psychiatrists aiming to please politicians, etc.

 

Sure - ideally we'd be able to find out enough about the individuals to let us do that. But it really does seem like UK medicine has been unusually terrible with ME/CFS for a long time, that a lot of prejudices have seeped into UK medical culture, and that the people in positions of authority within UK medicine will often have relationships with those with a vested interest in protecting work like PACE. There are other countries that seem unusually bad too, but if I was choosing between a UK researcher and a US, and I couldn't find any indication of their approach as an individual, I'd be likely to go for the US one.

This is certainly something of a prejudice that could go wrong though. Maybe I shouldn't have said it- I think I was just thinking out loud.

 

Well, yes and no. It depends what you mean by a long time. God knows where we would be had it not been for some UK medicine pre about 1990.

 

That's what I thought too

But no, I found this profile stating "Christopher Eccleston is Professor of Medical Psychology at The University of Bath in the UK, where he directs the Centre for Pain Research." https://brainmind.cochrane.org/about-us/meet-senior-editor
Isn't Bath where Esther Crawley leads a CFS center? Different institution but professional ties of some kind seem possible. Haven't found such suggestions though so no idea, just an association with 'Bath'.

 

I just looked at this link and noted the phrase "He is actively engaged in evidence-based medicine". Why does my heart sink when I read the phrase 'evidence-based medicine'? It seems to invariably mean bad and unreliable evidence.

 

Yes I had a similar response. Something along the lines of "I hope that doesn't mean what I think it means".

These terms show up in all sorts of contexts where it's less about science and measurements, and more about "someone somewhere had a positive opinion on this/has seen this work for a handful of people". The word evidence is reminiscent (on purpose, of course) of the concept of proof, but in practice it usually means significantly less. Sometimes to the point of claiming basically the opposite of what is actually happening, apparently

ETA: That said, it also says something about him being involved with pain. Pain is rather hard to measure, so I'm not completely sure if this area has better methods available (please enlighten me if those exist - always good to broaden the horizons).

 

Cochrane seem to now have decided that ME/CFS will be moved from the Comon Mental Disorders group, though are not saying where we will be moved to:

Source Blog post by Caroline Struthers containing David Tovey's response to her complaint to Cochrane about the Exercise Review, see https://healthycontrolblog.wordpres...iew-of-exercise-for-chronic-fatigue-syndrome/

 

Encouraging. A key issue is to ensure psychiatrists have no overbearing influence or oversight.