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

MEMarge said:
Yes and those who actually listen to their patients realise that GET and PACE-style CBT do not work, but have to phrase their approach in terms that still qualify for CCG (Clinical Commissioning Group) funding.
Click to expand...
And because it’s not explicit you play Russian roulette if you use any of these services as to what exactly the approach will be in practice. presumably in some cases even individuals working within the same service might have to go under the radar to not push PACE style approach if their team colleagues/managers are still in the old mindset. And to be frank if a patient is clued up on PACE you’re likely to tone down what you say so even if someone in an ME clinic says they don’t do PACE approach/GET as a patient you have to be a bit sceptical.
 
MEMarge said:
Very interesting find about Professor Paul Garner. (Yes the longhaul COVID patient who has been in touch with Charles Shepherd and acknowledges concerns re ME developing in some people post COVID.)

"I was part of the original team that set up the Cochrane Collaboration, and currently I am the Co-ordinating Editor of the Cochrane Infectious Diseases Group.
Click to expand...
 
Great to see Paul Garner's fury with both NICE and Cochrane GET recommendations. To see the key point that what we need help with is stopping ourselves overdoing it, not advice to do more, is fantastic. Just what we've been saying for 30 years.
 
I was a bit put off by the article because it misrepresents NICE's non-statement, but it's otherwise a great summary of the situation and has very strong words from Garner. It clearly marks a shift in attitude. So weird that it's published on BMJ while the editorial board itself has been involved in defending this indefensible nonsense on many recent occasions.

How incredibly silly will that whole "WE ARE BEING SILENCED" thing will look in the next few months. Especially with the details having been made public as it happened. This process could not have been more inappropriate and corrupt. Politics and medicine make for a toxic mix.
 
Hilda Bastian: Steps to reduce bias in systematic review protocols
(The Publication Plan)
https://thepublicationplan.com/2020/07/22/steps-to-reduce-bias-in-systematic-review-protocols/

In their own words, Cochrane systematic reviews are “the benchmark for high-quality information about the effectiveness of health care.” However, Cochrane has been criticised over its lack of transparency in the past, and Hilda Bastian, one of its founding members, thinks there is room for improvement in minimising bias.
Click to expand...
 
Last edited:
Caroline Struthers said:
Further to this comment about the scope of the review, I noticed a paragraph in the CBT review referring to a programme of reviews on CFS, which is why the review is important

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

Why it is important to do this review
The current body of evidence for CBT remains limited to narrative synthesis within generic CFS reviews (NICE 2007; Chambers 2006) or to meta‐analysis of mean effect sizes (Malouff 2008). Furthermore, potential heterogeneity has been largely based on qualitative assessment and the impact of symptom severity and healthcare setting are uncertain moderators of effect (NICE 2007). An in‐depth, up‐to‐date, systematic review of CBT alone and in combination with other treatments for CFS is of key importance to inform treatment decision by patients, clinicians and policy‐makers. This review is central in a programme of Cochrane reviews for CFS, which also cover exercise therapy (Edmonds 2004), pharmacological treatments (Rawson 2007) and complementary approaches, including acupuncture (Zhang 2006) and traditional Chinese herbal medicine (Adams 2007).​

Two reviews mentioned in this programme have disappeared. The review of pharmacological treatments Rawson 2007 [Rawson KM, Rickards H, Haque S, Ward C. Pharmacological treatments for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2007, Issue 4. [DOI: 10.1002/14651858.CD006813] and acupuncture Zhang 2007 [Zhang W, Liu ZS, Wu Taixiang, Peng WN. Acupuncture for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2006, Issue Issue 2. [DOI: 10.1002/14651858.CD006010] despite them having a full reference in the review. How can two documents with a DOI disappear without trace? Presumably these were protocols that never progressed to reviews? I might try and contact the authors to find out what happened.

The bringing together of trials of all pharmacological treatments in particular would have been (and still would be) very useful to enable comparison between alternative hypotheses about what may cause and perpetuate the condition, and what may or may not help patients. I will comment on the review and ask them to correct the text referring to reviews that never existed.
Click to expand...

I finally got round to submitting a comment about this on the CBT for CFS review

https://healthycontrolblog.wordpres...hranes-2008-cbt-for-cfs-review-3-august-2020/
 
This is also relevant here:

Scottish Government Issue Caution Notice for Graded Exercise Therapy in ME/CFS & Post/Long-Covid

https://meassociation.org.uk/2020/1...d-exercise-therapy-in-me-cfs-post-long-covid/

Discussed here:
https://www.s4me.info/threads/the-m...cise-therapy-in-me-cfs-post-long-covid.17297/

Following a review of the evidence behind existing recommendations of GET as a suitable therapeutic treatment for ME/CFS, Health Improvement Scotland’s Health Technologies Group produced a rapid response in August reporting the conflicting reports of effectiveness for GET.
Click to expand...
Especially:
“A Cochrane systematic review and a NICE Guideline are currently being revised and updated and caution should be noted on the use of GET for CFS/ME until the updates are published.
Click to expand...
 
Last edited by a moderator:
rvallee said:
This is also relevant here:

Scottish Government Issue Caution Notice for Graded Exercise Therapy in ME/CFS & Post/Long-Covid

https://meassociation.org.uk/2020/1...d-exercise-therapy-in-me-cfs-post-long-covid/


Especially:
Click to expand...
The Cochrane review is not being revised - it has been already been revised to say (still) that GET is effective at reducing fatigue. Cochrane are going back to the drawing board and doing a new protocol for the review - so it's a completely new review, not a revision. Cochrane have not made this clear, and that's why it's so ridiculous they have not withdrawn the existing "revised" review.
 
In other news, my 2nd comment on the 12 year old CBT for CFS review which is now used in four clinical guidelines has been published nearly three months after I submitted it, with another inspiring response from Cochrane Editor John Hilton. Fun fact, I applied for John's job ages ago, and was quite upset (at the time) not to get it! I know John quite well. He's a nice guy. I wonder if I had got that job, I would be writing such responses to people commenting on Cochrane reviews...difficult to get my head round that concept...

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/read-comments
 
So their excuse is that at the start of the review they have this sentence in italics:
This review was last updated in 2008 and is no longer current. The author team is no longer available to maintain the review.
Click to expand...
Surely if a review is over 10 years old, has been notified to them as out of date and inaccurate, and they can't get the old authors to update it, the only option should be to withdraw the review and commission a new one with a new protocol that takes into account recent develpments.

I wonder how may other old reviews they have that are giving misinformation.

There is something very wrong with a setup that gives complete power to the authors of reviews over whether they are updated or withdrawn. Surely the point of having editors means there should be some ability to withdraw old inaccurate reviews.

Would it be possible for another review team to come forward and undertake to do a new review? If so, can we prompt a few appropriately qualified people who understand the situation and understand good research to step in and do so?
 
Trish said:
So their excuse is that at the start of the review they have this sentence in italics:

Surely if a review is over 10 years old, has been notified to them as out of date and inaccurate, and they can't get the old authors to update it, the only option should be to withdraw the review and commission a new one with a new protocol that takes into account recent develpments.

I wonder how may other old reviews they have that are giving misinformation.

There is something very wrong with a setup that gives complete power to the authors of reviews over whether they are updated or withdrawn. Surely the point of having editors means there should be some ability to withdraw old inaccurate reviews.

Would it be possible for another review team to come forward and undertake to do a new review? If so, can we prompt a few appropriately qualified people who understand the situation and understand good research to step in and do so?
Click to expand...
You'd have thought wouldn't you? Cochrane changed their withdrawal policy in August 2019 to allow this ridiculous situation to happen. It's absolutely nuts. When I suggested on this forum that the timing of the policy change was a bit spooky - ie a month after I and others met with the Editor in Chief and begged her to withdraw the exercise review rather than publish the amended version, I was told that there was no evidence that there was any connection between the complaints about the exercise review and the long campaign to get it withdraw and the policy change. True, and I think I have no way to collect any evidence either as Cochrane is not subject to FOI. But I intend to ask about it anyway - minutes of the meetings etc. Usually a Cochrane policy change takes years of consultation - many many meetings, working groups etc.
 
Caroline Struthers said:
You'd have thought wouldn't you? Cochrane changed their withdrawal policy in August 2019 to allow this ridiculous situation to happen. It's absolutely nuts. When I suggested on this forum that the timing of the policy change was a bit spooky - ie a month after I and others met with the Editor in Chief and begged her to withdraw the exercise review rather than publish the amended version, I was told that there was no evidence that there was any connection between the complaints about the exercise review and the long campaign to get it withdraw and the policy change. True, and I think I have no way to collect any evidence either as Cochrane is not subject to FOI. But I intend to ask about it anyway - minutes of the meetings etc. Usually a Cochrane policy change takes years of consultation - many many meetings, working groups etc.
Click to expand...
Have they explained what does happen then with a review in this situation? Does it just stay there forever? Can it be replaced by anything else?

What happens if a different set of authors want to review the exact same topic? Would it never be accepted by Cochrane, on the basis that there is a pre-existing review?
 
Andy said:
Have they explained what does happen then with a review in this situation? Does it just stay there forever? Can it be replaced by anything else?

What happens if a different set of authors want to review the exact same topic? Would it never be accepted by Cochrane, on the basis that there is a pre-existing review?
Click to expand...
When ME comes out of Cochrane's mental health straitjacket, propose a review that excludes obsolete criteria, such as Oxford, and looks primarily at objective outcomes. A quick job, I imagine.
 
Last edited:
Andy said:
Have they explained what does happen then with a review in this situation? Does it just stay there forever? Can it be replaced by anything else?

What happens if a different set of authors want to review the exact same topic? Would it never be accepted by Cochrane, on the basis that there is a pre-existing review?
Click to expand...
I think I will lodge a formal complaint about the conduct of the Editor-in-Chief regarding the introduction of the new withdrawal policy which I suspect is the only way to get out of continuing the correspondence via comments between me and John Hilton. There is a thing called "The Cochrane Library Oversight Committee" which is the nearest thing to independent you get within Cochrane - so probably not very independent. But I will give it a whirl. https://www.cochranelibrary.com/help/complaints
 
Mithriel said:
At least that will leave a document trail. Thank for your efforts. I have no expectation that it will lead to even a common sense result never mind justice but I hope that history will see what they have done to us.
Click to expand...
Common sense is in very short supply at Cochrane. They have policies and processes aplenty to follow instead, which they seem to think makes up for it. So yes, it will be an academic exercise, but as you say, at least there will be a written record.
 
You must log in or register to reply here.
Back
Top Bottom