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

Thank you very much to the following organisations for adding their support to the Open Letter, and for promoting the petition to their members:

Millions Missing Stavanger (Norway)

Norwegian ME-association

ME/CFS Israel


5630 signatures on the petition

We'd like to send emails to ME/CFS organisations in a range of countries where English is not a first language e.g. Italy, Sweden, Spain, Portugal, Poland. If any members have contacts in such countries or even just proficiency in the relevant languages and are willing to send an email, please let us know. We can help with words for the email in English.
 
An update has been posted on the petition site:

Thank you very much to all who have signed the petition. Please keep sharing the link to your networks.

We sent the open letter to Cochrane on 28 August 2023. Although we have had some acknowledgements of receipt, as of 12 September we have had no substantive replies, and there have been no relevant announcements from Cochrane. We will shortly send a followup letter, noting the support we have received here and suggesting they read the many comments that the petition signatories have made.

Organisations can sign the petition - huge thanks to those who have signed and who have shared the petition link with their members. If organisations want to record their support, they can also contact us at the Science for ME forum (moderators@s4me.info), and we will add their name in support of the open letter.
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Not even a word from Bastian makes her whole involvement, or lack thereof, seem even worse. She is the face of this now, she is supposed to be independent from Cochrane. Cochrane has a lot to deal with here, they will consult with their lawyers and no doubt do a lot of coordination with the very people responsible for this.

Probably none of it is good for us, but they have a lot to deal with. Including how they could handle the very public, and I have no doubt very real, threats to their reputation from people like Clare Gerada, and how it could affect their funding.

Bastian can speak for herself. She chose not to say anything at all. To me, that says everything.
 
rvallee said:
Cochrane has a lot to deal with here
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Cochrane has much bigger problems than us, including, as far as I can see, how it can continue to exist.

That's (somewhat perversely), not good for us, because key decisionmakers probably don't have the bandwidth to deal with the problem they have created for people with ME/CFS. Also they will be unwilling to bite any hands that are still feeding them, which appears to be pro-BPS individuals and organisations. And also they will be unwilling to admit, at the same time as they are trying to convince potential funders of Cochrane's importance, that swathes of their reviews are in fact misleading due to a poor understanding of research methodology.
 
rvallee said:
Not even a word from Bastian makes her whole involvement, or lack thereof, seem even worse. She is the face of this now, she is supposed to be independent from Cochrane. Cochrane has a lot to deal with here, they will consult with their lawyers and no doubt do a lot of coordination with the very people responsible for this.

Probably none of it is good for us, but they have a lot to deal with. Including how they could handle the very public, and I have no doubt very real, threats to their reputation from people like Clare Gerada, and how it could affect their funding.

Bastian can speak for herself. She chose not to say anything at all. To me, that says everything.
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Bastian, I think needed to step down and be replaced near the beginning if she found herself unable to undertake the work in a timely fashion and with due consideration of the consequences of not doing do. If she was the victim of circumstances outside her control, this would be the logical and honourable response. To not have done so and to have left us all at the mercy of ongoing harms and prejudice, is unforgivable. We cannot get back the lost decades, decades of medical abuse and social isolation extended cruelly by three years and counting. But an immediate retraction and a public apology would go some way towards meeting basic professional obligations.
 
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Hutan said:
Thank you very much to the following organisations for adding their support to the Open Letter, and for promoting the petition to their members:

Millions Missing Stavanger (Norway)

Norwegian ME-association

ME/CFS Israel


5630 signatures on the petition

We'd like to send emails to ME/CFS organisations in a range of countries where English is not a first language e.g. Italy, Sweden, Spain, Portugal, Poland. If any members have contacts in such countries or even just proficiency in the relevant languages and are willing to send an email, please let us know. We can help with words for the email in English.
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Have you got Long Covid Physio on your list? If not I'm happy to contact them?
 
Hutan said:
And also they will be unwilling to admit, at the same time as they are trying to convince potential funders of Cochrane's importance, that swathes of their reviews are in fact misleading due to a poor understanding of research methodology.
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Their "masks don't work" review, however, very popular in conspiracy crowds. I keep seeing it used as "definitive evidence", despite Cochrane actually coming out to do damage control and insist it doesn't mean that. People who would otherwise never trust anything out of Cochrane.

Cherry-picking, now that's something Cochrane loves that the conspiracy and antivaccine crowds equally love. It's also frequently cited by prominent minimizers, who don't seem to notice or care that conspiracy crowds love their stuff. The same people who sold "herd immunity", then "hybrid immunity", and who keep insisting that COVID is just a regular cold now.

It wouldn't be nearly as bad if Cochrane wasn't, somehow, the "gold standard" in evidence-based medicine. This is literally the best they can do. And it's terrible. This entire model needs to be thrown into the deepest volcano in the solar system. Then nuked from orbit. And probably heavily salted, just to be sure.
 
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A big thank you to the World ME Alliance for signing the open letter, and also for promoting the petition to its international network of member patient organisations.

Particular thanks to Sian Leary, Head of Advocacy and Communications, for her support. :emoji_blossom:
 
Here's the report of signatures by country:
Country: Name (Count All)
Argentina 5
Australia 699
Austria 20
Azerbaijan 1
Barbados 1
Belgium 116
Belize 1
Brazil 6
Bulgaria 2
Canada 498
Colombia 1
Costa Rica 1
Croatia 6
Cyprus 2
Czech Republic 3
Denmark 170
Estonia 1
Finland 23
France 340
Germany 211
Gibraltar 1
Greece 6
Grenada 1
Guadeloupe 2
Hong Kong 1
Hungary 2
Iceland 1
India 4
Ireland 27
Isle of Man 1
Israel 34
Italy 55
Japan 1
Jersey 1
Lithuania 1
Luxembourg 1
Malaysia 1
Mexico 5
Montenegro 2
Morocco 1
Netherlands 410
New Zealand 282
Norway 372
Palestine 1
Philippines 1
Poland 4
Portugal 5
Réunion 1
Saudi Arabia 1
Serbia 2
Singapore 1
Slovakia 1
Slovenia 1
South Africa 11
Spain 69
Sweden 91
Switzerland 30
Thailand 1
Trinidad & Tobago 3
Turkey 2
UK 1824
US 536

Grand Total 5904
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As I read that list, I think of the people who are the sole signatories of their country. I hope they have support around them.

Top ten countries: UK 1824, Australia 699, US 536, Canada 498, Netherlands 410, Norway 372, France 340, NZ 282, Germany 211, Denmark 170
 
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Here's the daily increase in signatures. Things are tracking pretty well, there's a steady increase.

If you want to check out the organisations that have signed the open letter, have a look here.
S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

It would be great to get more organisations supporting the letter. If you don't see your organisation on the list, perhaps you can ask them to support it. It can take organisations a while to make a decision.

We do know that petitions aren't the way science or clinical guidance outcomes should be decided; the open letter doesn't ask for that. What is needed is a review process that is unbiased, well done and timely.
 
Shared it in my group and will probably share it a few more times for visibility but I don't expect a lot of signatures. I think for a lot of people here Cochrane and this "academic debate" is a bit obscure. I tried my best to explain it though and hopefully those a bit more interested in advocacy will sign.
 
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