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

Arguably best to tick every formal admin box along the way, so they can't say you didn't try it.

One of the most powerful tools we have is going through all the formal processes, and getting the important stuff on the formal record. Then nobody can say they were not informed.

 

Even that is not yet clear, since we haven't seen even a protocol, let alone a review. There is some patient/carer input built into the process, but the review writing group is dominated by Cochrane insiders and others of unknown views.

 

I get the sense that it is some organisations with connections to people on the IAG that are unwilling to support the campaign, perhaps because they think everything will be ok.

Yes, the lack of communication from advocates inside the process is really odd. But I do note that none of the advocates inside the process have said 'stop doing what you are doing, it's not helping'.

There's also the fact that Cochrane still gets to decide if the resulting review, should it ever be finished, gets to be a Cochrane review. It feels like a lot of delaying going on, on Cochrane's part, a lot of hoping the problem will just go away.

 

I think it would be perfectly reasonable to conclude, from the information we have to date, that the whole process was set up to shut us up for as many years as possible and keep the 2019 review in place.

From the outslde it seems to be a complete farce that has made appalling use of the goodwill of representatives from patient organisations to further purposes directly the opposite of those of the organisations they represent.

The behaviour of Cochrane in not acting to get the process back on track when it stalled back in 2021, and their refusal now even to contemplate taking down the 2019 review, gives a clear message that they don't want the process to succeed.

 

Sounds good, Caroline. The more people who know and might be able to take action the better.

I'm currently looking at the Cochrane complaints procedure, as I think we have several grounds for a complaint.
https://www.cochranelibrary.com/help/complaints

 

I know there are healthy people working to keep the FOI request legal stuff working as it should and make sure there is accountability when this is not the case

 

Off the top of my head so far:

1. A failure of process: The EiC (editor in chief) explicitly stated that the 2019 review was already outdated at the time of publication and a new review would be produced, with a time scale of two years, and regular progress reports. This has not happened. The outdated review remains in place after 4 years and there have been no updates for over two years.

2. A failure of process: We asked the EiC and the chief executive as a matter of urgency to withdraw the outdated review immediately as implicitly promised. The EiC flatly refused to do so with no explanation. This is in direct contradiction to her promise that it would be replaced by early 2022.

3. A failure of process: Cochrane promised in writing that the detailed critique by Michiel Tack of the 2019 review, submitted to and published by Cochrane in 2020, would be treated as a priority by Cochrane. This has not happened.

4. An important misjudgement: Failure to withdraw a review that the EiC admitted was out of date and flawed in 2019 is scientifically unsound, and inhumane. We provided evidence to support both of these statements and can detail it if required. The EiC has refused to accept this and take appropriate action of withdrawing the review. In doing so, she is placing Cochrane's reputation on the line and going against Cochrane's charitable principles.

5. A failure of process: Cochrane set up the process for the new review in early 2020. The EiC and leader of the IAG for the new review promised regular updates and completion in early 2022. There have been no updates since August 2021. An email was provided for public communication with the IAG in 2021. There have been no replies to emails since August 2021 as far as we are aware. Cochrane managers have failed to intervene effectively, or possibly at all, to set the process back on track.

6. An important misjudgement. The EiC has tried to fob off any enquiries or expressions of concern by telling correspondents to address their concerns to the IAG. The IAG is not responding and has not done so for over two years, and the EiC seems unwilling or unable to acknowledge that this is the case or do anything about it. As a flagship pilot of public involvement, this project is a dismal failure, and nobody at Cochrane is prepared to take responsiblity or do anything about it, as far as we can see. This further damages Cochrane's reputation.

Edit: I'll take this to the private staff space to enable the committee to discuss and decide on.

 

Don’t know but definitely a positive step, maybe ask for advice about any steps that could be taken within parliament eg the APPG approaching relevant Select Committees to highlight concerns.

 

Some more excellent news from Sweden - two more organisations signing:
RME Väst
#MillionsMissing Sweden

Thank you to the advocates (Mango ) involved in making that happen.

 

And more great news from Sweden, another organisation signing:
RME Stockholm

Thank you very much. With each organisation that signs I think of the people who care about this issue and want change. I find it very motivating.

That brings us to 54 organisations. I wonder how many ME/CFS organisations there actually are in the world. 54 must surely be a good percentage of them. Local organisations are valid - obviously the list is not just for national level organisations.

 

We have posted this update on the petition:

PETITION UPDATE
22 Oct: The office of the Editor-in-Chief replies

OCT 21, 2023 —

In our letter of 8th October addressed to the Chief Executive of Cochrane, we asked for "clear answers to the following questions:

1. Will the 2019 Larun review that Dr Soares-Weiser acknowledged was flawed four years ago be removed immediately?

2. If not, why not?

3. Who has the authority and responsibility to remove a Cochrane review that has been shown to be inaccurate and harmful?

4. Do you understand the harm that the ongoing hosting of the 2019 Larun review is causing people with ME/CFS and Long Covid?

5. The planned delivery time of the new review was early 2022. What is the new planned delivery time?

6. We understand Rachel Marshall left Cochrane last year. Who is her replacement as the 'Exercise therapy for ME/CFS' review update project manager?"
___________

Science for ME has received the following reply:


"Thank you for your email.

The 2019 version of the review has undergone thorough editorial scrutiny and the matter is closed.

For any new concerns about this topic, the process is to pass them to the Independent Advisory Group to inform their work. Please could you confirm if you are happy for us to share this correspondence with them so they can take your requests into consideration?

The Independent Advisory Group is seeking to address questions beyond the scope of the 2019 review, and we hope to share a progress update from them in the coming weeks.

Cochrane does not have the resource to hire project managers for individual reviews. A former member of staff helped to set up the Independent Advisory Group, which is now self-managing.

Kind regards,
Office of the Editor in Chief"

****
Clearly, as far as the Editor in Chief (Dr Karla Soares-Weiser) is concerned, the 2019 review will not be withdrawn until there is a new one to replace it, however long that takes. This is inconsistent with her statement at the time the 2019 review was published that it was already outdated and would be replaced in two years. Four years on, and it's still there causing harm.

Since 2019, both UK NICE and US CDC have looked at the evidence and concluded that exercise therapy should not be used as treatment for ME/CFS. Hundreds of you have told Cochrane in your comments on this petition that you have been significantly harmed by exercise therapy.

We and other patient organisations, over 50 now, have repeatedly told Cochrane that the treatment does not work and causes harm. We can only conclude that decision makers at Cochrane are more concerned about upsetting the review authors and their friends than the well-being of millions of people and the reputation of their organisation.


The next part of the reply tells us to talk to the new review's Independent Advisory Group (IAG). They even offer to forward our letter to them, having failed to notice that we have copied the IAG in to all our letters.

There are two problems with this.

First, the IAG has not been communicating for two years. We have sent the IAG a number of emails over the last month, and still there has been no reply. We have no idea if the IAG is still functioning, or if Hilda Bastian is still leading it.

Second, the IAG is not Cochrane, it's just an advisory group, and it has no control over what is done with the 2019 review. Even if the IAG was communicating with the ME/CFS community, they can't usefully discuss the removal of the 2019 review.

Cochrane seems to be distancing itself from the new review process, withdrawing editorial support, and passing responsibility for this situation to an advisory group with no teeth that appears not to be able to function as intended.

****
Having observed how many years it took for Cochrane to commit to change on this issue, and then how it has delivered nothing of substance for four years, we have no confidence that an acceptable replacement review will be produced. The flawed 2019 review continues to influence clinical practice, and that must stop.

Petition signatures and comments and organisations supporting the campaign help to demonstrate how strongly the ME/CFS community feels about ensuring medical professionals understand that exercise therapies don't fix ME/CFS. We will keep working on getting the review removed.

Since the last update, five more organisations have brought the total number of organisations supporting the campaign to 54. Thank you very much to:

Norwegian ME-association Oslo og Akershus
RME Skåne (Sweden)
RME Väst (Sweden)
#MillionsMissing Sweden
RME Stockholm (Sweden)

To see the whole list of organisations, click here.