Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

"retch out"

 

Ahhh yes - and I was being gullible .

 

From: Hilda Bastian, It’s a Start: The Amended Version of the Cochrane Review on Exercise and CFS, 3.10.2019,
https://blogs.plos.org/absolutely-m...n-of-the-cochrane-review-on-exercise-and-cfs/ :

"The previous editor-in-chief, David Tovey, had originally proposed that the review be withdrawn as it was so out of date, but that wasn’t well received, and it didn’t happen. Looking at it today, with all the statements in there that look current – like saying this version has had trials added – withdrawing it back then seems reasonable, and consistent with Cochrane’s practice, and its policy at the time (section 3.4.7 here). Not withdrawing it then seems political.


"In July 2019, though, there was a new policy on withdrawing reviews, making it more clearly a retraction than it used to be, making it much less of an option. An updated review isn’t going to be galloping over the horizon any time soon, though. I think this review now highlights a gap in Cochrane policy: there isn’t currently a mechanism for unambiguously and clearly flagging a review as out of date to readers. There’s just an editorial note where few would see it stating that it’s “substantially out of date”."
[Bolding mine]

see also: https://documentation.cochrane.org/display/EPPR/Version+histories#Versionhistories-:policy.3

[Edited to add: ]
https://twitter.com/user/status/1229075810646200320

Code:

https://twitter.com/_Lucibee/status/1229075810646200320

 

The allocation to another Cochrane review group seems to me to be a big challenge.

Hope it's OK to copy this from the current review thread:

Might be an idea to propse him as a member of the advisory group?
(I see the group is not confined to patients but an "independent advisory group".)

Given that we know from the PACE trial (reanalysis) that a considerable percentage of pwME will not benefit from exercise therapy and won't return to work, it seems to me rather contradictory if the work on the new review was allocated within the Cochrane Work Group.

I think it should be possible to point to those outcomes as contradictory to claims of relevant improvement though. The editor of the Work Group could be helpful in that regard?

(Edited for clarity.)

 

Does anyone know why this policy was changed and what process led to the change?

Is it just a co-incidence that this was occurring in the midst of the fight back against the withdrawal of Larun's exercise review?

 

From the doc posted above:

Which doesn't really explain why the policy was changed, other than it leading to too many new citations and entries in PubMed.

 

Yeah, that doesn't sound convincing as a 'real' reason to me. I wonder if their concern about too many PubMed citations began around the time powerful people were fighting against the withdrawal of Larun's review?

 

Although, see this doc: https://documentation.cochrane.org/display/EPPR/Serious+errors+in+published+Cochrane+Reviews

 

"What reasons did you have to change the policy?"

"Ah well we had particular reasons".

 

SO, as we know there is a serious error and it should be withdrawn!

I have been checking thro some of the 2,000 messages sent to ME Action, in response to NICE confirming that there will be no note/warning/other action taken re the current GDL, before the new ones are published in Dec.

There are SO many cases of serious and lasting harm from GET. It is heart-breaking.

 

And the mantra remains no evidence of harm so it's clear that significant efforts should be spent, sooner rather than later, at examining harm, which is a huge task not because it's hard to find but rather because there's so much of it out there.

I don't think we can move ahead without that. The asymmetry of bullshit means we have to spend the effort to counter the BS as it otherwise stands. But of course that takes resources away from trying to make progress. What a freaking mess.

 

I find it hard to believe that the ignoring, lack of recording or observing harms is innocent. Without evidence of harms, the powers that be can claim ignorance and it gives them a level of protection as they steamroller ahead with an agenda that has more to do with politics than health.

Removing that deniability is key.

 

The only reason to allocate it to the work group is because they will look at objective outcomes relating to occupation - ability to do things - not just work - but education, social activities, voluntary work, caring etc. The sole purpose would be to show how useless trials such as PACE and SMILE are because they didn't either measure or report those outcomes. It will illustrate how bad the research is on the treatments that don't work - ie. it is manipulate to flatter treatments they believe are helpful. And they don't measure the harm that some treatments cause. That's the point I'm trying to get across with the suggestion to move the review to a group where it's not really about the condition itself. It's all about focusing on objective outcomes. Cochrane have a bad habit of focusing on outcomes that are reported in the literature (ie. the ones the researchers want to use, or are convenient, or flattering to a favored treatment) - not the outcomes that are important to patients. My point is that if a review specifies outcomes important to patients that are not reported in the literature, it should (in theory) send a signal to primary researchers to use these patient-important outcomes in future trials.

 

Absolutely. It's not innocent, it's callous and uncaring. Maybe S4ME could create a database of trials, real-world (observational) studies, surveys etc. - documenting all outcomes measured, including harms, whenever they have been systematically recorded. And also including data about funders and sponsors of the studies. that way we'd have an comprehensive searchable of the ME treatment evidence landscape. Cochrane review groups have disease/topic-specific databases, such as this one for dementia research https://alois.medsci.ox.ac.uk/search - although the study types are limited to the types of studies Cochrane includes in its reviews - ie. trials and diagnostic test accuracy studies. I think ALOIS is still the only Cochrane database that's properly open access. Also it's really useful because the records are of the studies, not of the publications. It would be great to have something like this for ME which included everything, case studies, surveys, etc. and was searchable so you could look specifically for evidence of harms and produce a report. You could also highlight the studies which didn't measure/report harms, and those which bias the evidence by relying on subjective outcomes in unblindable trials. (eg. PACE, SMILE etc.)

 

yes. it would be. I would love to do it and have energy but no time until September 2022. What frustrates me is that Cochrane has not used its considerable technical expertise (and money) to create one ginormous open access searchable study-based database rather than what they have which is a database of bibliographic records of trials called CENTRAL. https://www.cochranelibrary.com/search You can search for trials on ME or CFS by putting "myalgic encephalomyelitis" or "chronic fatigue syndrome" in the search box, and looking under the Trials tab but looking through the list, most are not actually trials - not sure why that is.....

 

I'd love if we could document if or how harms were measured at all.

They have a very blasé attitude to patient safety and have gotten away with it so far. I would go so far to say that this looking the other way is a fundamental part to the IAPT implementation.

By the time enough patients are seriously harmed or die so that anyone takes notice it'll be too late and vital services will already have been cut back and lost.

That doesn't even consider the harms to mental health patients who may suffer considerably and die because there's no one left to help them.

The absence of evidence is evidence of absence is not good enough. It wouldn't be acceptable with drugs trials & prescription and it shouldn't be here. This is the psychological version of the thalidomide scandal, but on a much bigger scale in my view.

But first we need to document it. We've already got some FOIs on reporting of harms from clinics. That's a start.

 

Actually, I'm wondering if it would be possible for someone to set up a template and then volunteers could fill in the fields of a particular paper when and as they have energy available.

This would require the person to first check for papers that have not already been entered into the database.

Is this at all possible? Or would a template itself be a large undertaking?

 

it would be a large undertaking to set up a template. It might be worth starting with the FOI data from clinics and working from there rather than starting at the trials end

 

If you look at the list under the trials tab, you will see that a lot of them aren't actually trials. I will see if I can find an example