Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

I assume this is a response to this section of our letter of 20th November

So they are telling us that the complaint from the BPS people that led to over a year of meetings was at least in part based around their perception of conflicts of interest in the IAG. The fact that Hilda says the new IAG member to be appointed in the new year is for 'balance' and is to be a 'medical practitioner working with people with ME/CFS', suggests to me that they objected to there being 3 patient reps and only 2 clinicians on the IAG.

And this is telling us our assumption in our letter that our complaints are not being considered is wrong. Since we were making that assumption on the basis of the very confusing message in the previous letter from Cochrane, it is good at least to have confirmation that our complaints are being considered.

 

Hi to all

following a flurry of signatures by Swiss PwME in the last couple of weeks the petition total now stands at 9780.

if you have social media accounts or a blog it would be great if you could do a seasonal share of the link to the petition, possibly after Christmas or in the new year

the open letter and petition will continue to be open to new supporters for as long as needed

NP x

 

Thanks Jonas

 

We're in a bit of a lull with this at the moment, but work on it hasn't stopped altogether.

From my point of view, we're waiting for a long list of things to happen:

The IAG (Independent Advisory Group to the new review process)

1. Hilda's next update on progress of the IAG and review.
IAG Update | Thread

2. Hilda's promised explanation of her statement on her Talk page set up for communication between pwME and the IAG where she said on 11th November: “I don’t believe lobbying could get the Larun et al 2019 removed from The Cochrane Library, as I understand the current arguments and the Cochrane policy.”
Talk page | Thread

3. Hilda's promised public consultation on a document the IAG prepared some time ago (a consultation first planned for autumn 2021)
"We also plan to get the IAG’s first consultation underway in the early weeks of the new year. That is a consultation on a paper summarising past critiques of the Cochrane review – see my last report for more details."
Hilda's December update

4. The planned revised editorial note the IAG are working on suggestions for, but that Cochrane editors will have the final say on.
"As discussed in my last report, the editorial note on the current review on exercise and ME/CFS will be revised. The IAG has been considering the practice of editorial notes on Cochrane reviews, and discussing possible contents for the revised editorial note."
Hilda's December update

5. News of the appointment of another member for the IAG
The December 2023 report from Hilda says
"There is one final vacant position on the IAG. A primary consideration in filling this position will be addressing concerns expressed about a perception of bias in the makeup of the IAG." This is expected to be filled by "a medical practitioner working with patients with ME/CFS." Nominations to be sent to Hilda by the end of January.
Cochrane IAG Update | Thread

I think the choice of appointee will tell us a lot about the level of influence of the BPS people on the process, especially as this appointment seems to have been instigated by the prolonged and delaying process of Cochrane considering a complaint that wanted the old review to stay and the new review process closed down. Hilda has clarified that the new person must be a doctor who deals with ME patients. She is avoiding answering questions on what is meant by the aim of the appointment being to provide balance.
"I realize the wording about the perception of bias is vague. I’m sorry about this, but I’m not going to expand on that – quite a bit of discussion went into alternatives before I decided vagueness was preferable."
Talk page | Thread

6. News on the timetable for public consultation on the protocol.
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Complaints

We await news on progress and outcome of Cochrane's handling of S4ME's five formal complaints submitted on 30th October 2023.
The 5 complaints are:
Complaint A: A failure of process - non removal of an outdated and incorrect review in the timescale promised.
Complaint B: A failure of process - failure to follow normal procedure on a critical comment (this refers to Michiel Tack's comment posted by Cochrane with an editorial reply saying it would be dealt with in the new review process which is 'a priority'.)
Complaint C: A failure of process - failure to take effective action for over two years by the Editor-in-Chief on the stalled new review process.
Complaint D: A failure of process - the Editor-in-Chief's failure to address serious concerns from the public, and passing them, inappropriately, to the IAG that has no power to act on our requests, and has a non functioning email address.
Complaint E: An important policy misjudgement - making the withdrawal of the 2019 review contingent on the publication of a new review.
(We highlighted here the evidence of ineffectiveness from NICE and the CDC, and evidence of harms)
Complaint letter

On 19th December the S4ME committee received a response to our letter of a month earlier in which we assumed on the basis of previous correspondence that our complaints were not being considered. In this letter, Jordi Pardo Pardo, Interim Chair. Cochrane Governing Board clarifies the position. He says that some of the points we have raised had been considered already after complaints in 2020. And concludes his letter:
"However, the other matters you have raised are under review, and we will get back to you in due course."
Thread with letter

It appears from this reply that they are standing by their decision of 2020 not to withdraw the 2019 review in reponse to one or more complaints we were not aware of. I'm guessing they aren't willing to re-open that decision despite developments since 2020. So I'm guessing they are just going to do a fudged consideration of our more minor complaints of the editor not responding adequately initially to our letters.

From Hilda's latest update:
Complaints and communication
As a result of the complex internal restructuring Cochrane began in 2021, the organisation had a new communications team. Early in December I asked for a meeting with the people involved with managing complaints, to discuss issues with recent complaints and how responsiveness could be improved.

Complaints and questions are being sent to multiple individuals and addresses across Cochrane and the IAG, so coordination is critical to ensure that issues and concerns don’t fall through the cracks. Our meeting was very useful for clarifying our respective roles and expectations.

We agreed on pathways for referring complaints, along with continuing liaison. This should improve responsiveness in future. The Cochrane team had been working on several system improvements for some time, too, so there will be more to report on this soon.
Hilda's December update
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S4ME committee actions

There is a lull in activity on this by the committee, as progress now largely depends on Cochrane, and all we can do is wait. We also have very limited capacity among committee members at the moment.

We still intend to formally submit the petition to Cochrane sometime soon and to consider any further action we can take.

One committee member has started work again on contacting more organisations to invite their support.

Another (me) is trying to write an article to submit to Cochrane through their comments system focusing specifically on harms, a subject they have completely avoided in all their communications in relation to the review, and with us and via Hilda, despite us specifically raising it in our letters and other comments received by Cochrane over the years addressing it.
Progress on my article is glacially slow, as I find myself cognitively very limited at the moment. Just keeping up with the other forum stuff I do is using up most of my cognitive capacity. So don't expect anything soon.

 

In creating Cochrane, they have somehow managed to create a beaurocratic monster that swallows up anything important in endless meetings, and red tape rule books that don't allow them to actually make sensible decisions for the good of people's health.

It appears that somewhere in their monster reorganisation process that's taken several years and seems to be still ongoing, they have managed to lose sight of whatever complaints process they had set up. From what Hilda says that I quoted above, they had no structure in place to deal with our letters or complaints.

 

I'll ask in the committee and PM you.

 

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

Currently on 9929