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

Peter Trewhitt said:
I agree that we are under no obligation to follow Cochrane’s injunction to only communicate through their formal complaints channel. Indeed there seems to be little prospect of any communication with their complaints channel achieving any thing other than further obfuscation and prevarication.

The options seem to be:
  • Lobbying individuals within Cochrane who might actually listen
  • Lobbying any of Cochrane’s funders
  • Complaints to the charity commission
  • Complaints to ? (I have forgotten the name of the group that oversees publication standards)
  • General publicity on the relevant issues
  • ?
Click to expand...

I agree Peter. Cochrane have no wish to communicate constructively with the patient or scientific community.

edit: if I were to be in a position to write which unfortunately I am not, I would consider writing to my MP who last week committed to going to the APPG. He is a new MP and hopefully, the APPG will have introduced him to some of the issues around ME. My last MP Ed Davey would sometimes send on my communications with him to an appropriate person in government. It all helps I think.

edit 2: I've just Wikied Andrew Gwynne and read that in 2020 he had long covid for 16 weeks. Would this have given him any insight into ME, and helped him develop valid views on exercise in ME?
 
Last edited by a moderator:
Peter Trewhitt said:
Is it worth archiving Hilda’s blog (https://hbprojecttalk.wordpress.com/2023/11/10/welcome/) in case that disappears too? Though that presumably is under Hilda’s control rather than being part of Cochrane’s website.
Click to expand...

I think I've got it as text.

However, to make a version that was in any way readable, I had to reformat it. I deleted the links and images, and now the conversations follow on reasonably neatly. But it's not a true archive of the original site, just a record of what people said and when.
 

Attachments

Last edited:
Peter Trewhitt said:
Lobbying any of Cochrane’s funders
Click to expand...
Lobbying Cochrane's funders, which are mostly governmental bodies and some charities, seems like possibly one of the best options. Cochrane repeatedly make the point that the entire point of their organisation is "Trusted evidence. Informed decisions. Better Health", engagement with consumers, accountability, transparency, integrity, etcetera, etcetera

That's one reason why they get funding. Clearly, this shows they're actually not very good at those things, so they seem like a pretty poor choice for putting funds. This could, maybe, be done in the form of an open letter to Cochrane's funders? Particularly emphasizing the point that Cochrane is failing its stated values and goals on multiple counts

I'm skeptical complaints will get anywhere as they seem to have perfected the art of not responding to complaints.
 
Welcome! – Project Talk Page

Dec 17 archived version in the Wayback Machine, to add to
Kitty said:
This is a link to a web archive version, but I'm not sure whether it'll foul up on different systems. I had to do it as a Dropbox link because the S4ME site doesn't enable uploads in this format.

https://www.dropbox.com/scl/fi/4rmz...ey=66pa49vt9jw23st9eazj2v8vj&st=x9dwgvle&dl=0

ETA: It may not work if you try to open it direct from the link. I had to download the file first and then open it.
Click to expand...
 
This is Hilda's message posted on her talkpage:
https://hbprojecttalk.wordpress.com/2024/12/18/brief-message/
12/18/2024
Brief message
Many of you will have seen Cochrane’s recent communication about the review on ME/CFS and exercise. We regret their decision to reject our advice, and are discussing next steps.

On behalf of the Independent Advisory Group
____________

Hilda has now allowed my string of messages that have been waiting since as long ago as September without any requests for edits before allowing them.

Here is her response to one of them:
Sorry this sat here so long: I just didn’t know how to respond, and posting it without responding was also problematic.

I know it doesn’t help, as efforts haven’t been successful, but a lot of effort has been (and continues to be) put into this.
Click to expand...
And to another one:
Again, apologies for taking so long – I didn’t know what to say.

I agree this isn’t acceptable.

As I’ve posted*, the IAG is currently in discussions about developments and next steps for us.

Hilda

Click to expand...

And part of a reply to @Peter Trewhitt
I have long been in favor of withdrawing the 2019 review, which I wrote before this process started – but just don’t believe that will happen.
Click to expand...

And her reply to my latest post expressing shock at Cochrane's decision:
trishrhymes
December 18, 2024 at 9:30 am
Hello Hilda,

I am shocked, but not really surprised by Cochrane management’s decision to scrap the new review. They have let people with ME/CFS down very badly, having strung us along with 5 years of obfuscation and inactivity. I hope you will lead the IAG in protesting in the strongest possible terms at they way their goodwill and efforts have been abused by Cochrane.

I hope now that the new review is scrapped, the editors will turn their attention to a proper look at the evidence that exercise therapy causes significant harm, and is ineffective for people with ME/CFS, and act with scientific integrity and humanity by withdrawing the 2019 Larun review.

It is notable, and shameful, that in all the Science for ME attempts to hold a polite and professional conversation with Cochrane, they have never answered any of our questions, nor have they acknowledged that they understand the severity of harm that exercise therapy has caused to thousands of people with ME/CFS. Nor have they had the courtesy or professionalism to consider in a timely fashion complaints we made over a year ago. We still await the outcome.

I assume this decison by Cochrane releases you from any commitment to confidentiality and you will be able to give people with ME/CFS an honest and frank account of what has been happening behind the scenes, and why the whole process has been such a car crash.

Best wishes,

Trish Davis

Like

Reply
  1. d9dc69067bd19333a734d920637ce661c4172d54e43c32bfba4db8a9dfa97d7e

    Hilda Bastian
    December 18, 2024 at 5:57 pm
    Dear Trish

    I’m shocked and surprised. I agree you’ve been let down badly – though there was a lot of activity, that doesn’t help, given this development.

    I’ve added your requests to the list for our discussions.* (I’m not going to dodge this – I just want to work through this with the group.)

    Hilda
Click to expand...
I choose to see Hilda as honestly disagreeing with Cochrane's decision, and wanting to do something about it. She says she's going to discuss it with the IAG.

Hilda has also informed me that she is not taking down the Talkpage and is keeping the email address which she, not Cochrane has access to:
cochrane.iag@gmail.com
 
Last edited:
Trish said:
This is Hilda's message posted on her talkpage:
https://hbprojecttalk.wordpress.com/2024/12/18/brief-message/
12/18/2024
Brief message
Many of you will have seen Cochrane’s recent communication about the review on ME/CFS and exercise. We regret their decision to reject our advice, and are discussing next steps.

On behalf of the Independent Advisory Group
____________

Hilda has now allowed my string of messages that have been waiting since as long ago as September without any requests for edits before allowing them.

Here is her response to one of them:

And to another one:


And part of a reply to @Peter Trewhitt


And her reply to my latest post expressing shock at Cochrane's decision:
I choose to see Hilda as honestly disagreeing with Cochrane's decision, and wanting to do something about it. She says she's going to discuss it with the IAG.

Hilda has also informed me that she is not taking down the Talkpage and is keeping the email address which she, not Cochrane has access to:
cochrane.iag@gmail.com
Click to expand...
These are the first replies to you Trish from Hilda that I haven’t felt to be inappropriate and offensive.

I am also very much inclined to believe that Hilda is genuinely dissatisfied with this outcome.

However my concern would be that she will ultimately adopt a position of powerlessness that is not altogether genuine in the face of this decision.

HB is a very influential person and while of course others with more power and influence have directed this process, I feel at this point in her well established career and having actually created the menace to public healthcare that is Cochrane, courage and leadership is required address the consequences.

I hope this will manifest itself for HB and that she will at last be prepared to take responsibility for the damage her enterprise has caused, and burn some bridges.

That HB will leverage her position to do some damage herself. To other influential and highly exploitive individuals. Should that be what it takes to resolve this situation in favour of positive health outcomes for members of the public.

I assume that public confrontation directed towards the individuals who have chosen self interest over service would be necessary.

If some people weren’t afraid of a little public scientific inquiry and other people weren’t afraid of those people we’d not be where we are now.
 
Last edited:
One of the things the IAG was working on was a draft editors note to be added to the 2019 review. This clearly hasn't happened. The current editors note says:
Editorial note

A statement from the Editor in Chief about this review and its planned update is available at https://www.cochrane.org/news/cfs

The link, https://www.cochrane.org/news/cfs goes to the 2019 announcement of the new review process to be set up that was published on the same day as the Larun review was published.

I'm guessing they intend to just quietly remove this out of date editorial note and hope nobody notices.
 
Trish said:
I choose to see Hilda as honestly disagreeing with Cochrane's decision, and wanting to do something about it. She says she's going to discuss it with the IAG.
Click to expand...

Are your exchanges public at this point? I think your instinct about Hilda is on target. It has always seemed like she's been in a squeeze between trying to do what's right and having to deal with Cochrane.
 
dave30th said:
Are your exchanges public at this point? I think your instinct about Hilda is on target. It has always seemed like she's been in a squeeze between trying to do what's right and having to deal with Cochrane.
Click to expand...
The exchanges I've quoted are on her talkpage which is public.
https://hbprojecttalk.wordpress.com/2023/11/10/welcome/
The bit about her keeping her talkpage and email available is from a private email.

If anyone wants to communicate publicly with Hilda, do it on the Talkpage. If you want to communicate privately with her, use the email: cochrane.iag@gmail.com
 
Note that the talkpage is a rather unwieldy string of replies to her original introduction to the talkpage.
https://hbprojecttalk.wordpress.com/2023/11/10/welcome/

Hilda's brief announcement about what she's doing now, ie discussing next steps with the IAG is a second post on the talkpage.
https://hbprojecttalk.wordpress.com/2024/12/18/brief-message/

Rather than adding to the ever lengthening string of 'replies' to her first post, I intend to continue the conversation with Hilda as replies to this second post.
 
petrichor said:
Lobbying Cochrane's funders, which are mostly governmental bodies and some charities, seems like possibly one of the best options. Cochrane repeatedly make the point that the entire point of their organisation is "Trusted evidence. Informed decisions. Better Health", engagement with consumers, accountability, transparency, integrity, etcetera, etcetera

That's one reason why they get funding. Clearly, this shows they're actually not very good at those things, so they seem like a pretty poor choice for putting funds. This could, maybe, be done in the form of an open letter to Cochrane's funders? Particularly emphasizing the point that Cochrane is failing its stated values and goals on multiple counts

I'm skeptical complaints will get anywhere as they seem to have perfected the art of not responding to complaints.
Click to expand...
For sure hitting their funding is the only way to get any traction. They are currently behaving in a way that is contrary to what a charity is expected to do in general, but explicitly as you state in terms of producing trusted evidence and engaging with consumers, which is something they often boast about. In fact they do none of this.

And I would argue that Cochrane themselves gave the best argument for their immediate defunding: they claim to not have the resources to make an update to a minor review, even though all the work was being done independently by a writing group and an advisory group. They are entrusted with legitimacy for producing reviews, somehow, but have said explicitly that they can't handle the workload, meaning that public bodies are offloading a responsibility to an organization that cannot even perform basic functions.

There are two fronts here: grants and such that they get from funders, and licensing from their library. I don't know if we can muster the workload to attack both, but I think this is the winning strategy. Anyone who licenses their library must be aware that this organization has no capacity to perform even the most basic quality control and does not respect their own rules, let alone is bothered by clear evidence of harm resulting from their ineptitude.

We should not bother much with generic complaints, they won't achieve anything. We hit them in the only place that can hurt them: their bank accounts. Especially as they are already on a downward curve in both funding and credibility.
 
You must log in or register to reply here.
Back
Top Bottom