Cochrane Review: Cognitive behaviour therapy for chronic fatigue syndrome in adults, 2008, Price et al

An old study but, as shown in this thread, https://s4me.info/threads/top-10-sc...f-citations-tweet-by-dr-mark-gutheridge.7461/, one of the most cited ME/CFS papers in the past 10 years, so thought it might be useful to have here.

Open access at https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/full

 

Tweet from @Caroline Struthers :
After complaint to
@C0PE
@cochranecollab
have now posted the note stating their review https://cochrane.org/CD001027/DEPRESSN_cognitive-behaviour-therapy-chronic-fatigue-syndrome… **should not be used** on the plain language summary page - hurrah! Interesting alternative to retraction, or keeping it up to date - one of their "selling points"

 

Excellent work Carolien Struthers and everyone else involved over the years.

Surely Cochrane should also be sending out emails to inform health services etc that the review is no longer valid?

 

Good news! Do we know if this replicates to the re-hosted copies out there? There must be some way to do this, otherwise I don't know how anyone could keep track of things, but I assume it is a manual thing that must be done.

In hindsight it was not a very good idea to use the equivalent of "my dog ate my homework" as an excuse, especially in digital form. I guess they figured not enough people cared so what's the harm in giving an obvious BS justification. If only professional skeptics and various medical professionals care about such things regardless of who it affects.

 

".@cochranecollab @C0PE @NICEComms This review is still being used in 4 recent guidelines, including one produced by NICE in 2020 Will you contact the guideline publishers to alert them to the fact that they should not use it any more? cochranelibrary.com/cdsr/doi/10.10… If not, why not?"

 

I know I am expecting too much here but the conflation of ME with "tiredness in adults" reveals complete ineptitude throughout the entire organization, the kind where closing the whole thing down is obviously preferable to any alternative. This is not a small mistake to make, they genuinely have nothing to do with one another, even superficially. For laymen? Sure. For professionals? Get out of here. There is simply no defending this, it's completely arbitrary and misunderstands, frankly, everything.

A report by French medical authorities was published recently, yesterday I think. And it basically said that medical authorities are not doing anything about Long Covid because they don't believe in it. And those two things are related to one another. Evidence clearly does not matter, medicine simply does not follow evidence and words don't even mean what they actually mean. Medicine can follow evidence, and often does, it just doesn't have to, and can simply overrule evidence with personal opinion, with belief or disbelief, simply because the evidence points towards something that was already disbelieved, a cycle of failure guaranteed by using failure as a default.

And that's why we can't have nice things. Literally.

 

I'm sure this has all been done to death, by those far better at it than I. But this review is never mentioned as much as the exercise one--barely rates a mention on ME-Pedia's Cochrane page. I knew it would be awful, but I skimmed through for a few key tidbits. I thought the exercise review was bad.

The review is of 15 studies from 1992 through 2007. 4 were not published in a peer-reviewed journal, and 2 others that were, were plundered for unpublished information for this review.

Does that happen in any other illness?

The 15 studies included...well, I came up with 1338, but I think there's a different number in there & I'm past caring. The unpublished studies account for 148 pts, while the papers where they used what they wanted whether it had undergone peer-review (like any of this wouldn't have passed peer review with the people looking at these papers?) include another 100.

Does that happen in any other illness?

2 studies defined their cohorts using Andrew Lloyd's 2002 Australian RACP Guidelines; one was Lloyd's. That's 133 pts.
3 studies used Oxford Criteria and 7 used CDC (all post-1994, so presumably Fukuda), but...one used both. So including the pts in that study as being in both groups, that's 138 Oxford pts to go along with 497 CDC. Ah...hold on a second.

One of the "CDC Criteria" studies claimed to use CDC criteria but chose to waive the requirement of 4 out of Fukuda's checklist of 8 symptoms. That's the largest study, and 278 pts that I wouldn't include in the number of CDC pts total in this review (like any of this really matters, I know).

Does that happen in any other illness?

A 2004 selected pts on the basis of a Dutch measure I may have seem but that's unfamiliar to me at the moment (CIS). It required 4 months of fatigue. 151 pts.

2 studies looked at pts with a score of >4 on the Chalder Fatigue Scale. 3 months. That's 200 pts.

This review was published in 2008 by the Common Mental Disorders Group at Cochrane & as far as I can see wasn't periodically updated as the GET review was. It relied on a substantial percentage of pts who were the subject of unpublished research, a substantial percentage of pts who from the looks of it were never actually diagnosed with CFS according to any known criteria, a substantial percentage of patients who were specifically diagnosed by people choosing to waive much of the requirements for diagnosis yet labeled as having a recognized diagnosis based on an international consensus definition, and researchers for whom none of this was a problem.

As a result it was used in 4 guidelines, 2 in Germany (for Fatigue & Functional Disorders), 1 by NICE for 'Tiredness & Fatigue in Adults' in 2020; and a clinical practice guideline in Alberta, Canada. All of these were within the past 5 years. I suspect that if not for @Caroline Struthers it'd still be up.

ETA: pointing these items out & suggesting that a document like this is not only out of date but probably fell well short of the exalted reputation Cochrane holds to begin with is frowned upon by people like Kate Kelland & all the others who react to any criticism of these things with the straw man that there's a militant CFS mob unwilling to accept any possibility that psychological factors might play a role, or whatever garbage they're serving this week. So I'm going to sleep knowing that I'm a horrible person who has no business questioning experts on matters I haven't been educated on as I have no credentials after my name. Oh, wait--the review says it shouldn't be used for clinical guidance? Must be another victory for the activists applying political pressure at the expense of science.

 

The argument for not taking it down was that it didn't contain a "serious error". My mistake when asking for the reviews to be withdrawn was not pinpointing specific "serious errors". So the committee could just say there weren't any because I hadn't specified any for them to check. They didn't seem bothered that NICE had rated the quality of all the trials (some of which would have been included in this review) as low or very low So I, or someone else, could go back and list the specific serious errors in both reviews and have them look at it again.

 

I think they can/will argue that the errors are not numerical - they are essentially a matter of opinion, so errors of judgement. I might ask them to give me some examples of serious errors which have led to the withdrawal of a review in the past. I could also ask them to disclose the minutes of the meetings leading to the change of withdrawal policy. Of course they don't have to because as a charity they are exempt from Freedom of information law. Sigh.

 

Thank you, Trish. Mark did indeed go over it all with a fine-tooth comb. I'd only skimmed it when published because I knew the review was garbage & I was kind of burnt out on obvious debunkings that should never have been necessary, let alone put together by rather ill patients to correct scientifically and medically accepted guidance.

The gold standard. And nobody cared. It's just CFS. Nobody would believe what they got away with.

I still wonder how they can leave these things up when there's nothing in them that actually looked at CFS, only at now-discarded case definitions and studies that didn't even bother to use those, and one that claimed to use it but didn't. How does something like that (Prins 2001) make it past peer review?

 

The new NICE guidelines specifically say that CBT should not be offered to pwME/cfs as a 'cure' or 'treatment' for ME but as a coping mechanism for living with a chronic condition.
Therefore any of the CBT for CFS (or ME/CFS) based on the deconditioning/psychosomatic model should now be invalid.
Most if not all of the studies in the Cochrane review are directive CBT based on this model.
How is this not regarded as a serious error?