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

Hutan said:
I wonder, for example, what it is like to have ME/CFS or Long Covid in Russia or Thailand or Zimbabwe, or post Ebola syndrome in Sierra Leone. Does the 2019 Cochrane Exercise Therapy review influence these people's care?
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Perhaps it might also be how the UK-based Cochrane is viewed as relevant (vs how it actually is/is not relevant) to clinical guidance in a particular country.
 
Any feedback from the LC community?
I'm guessing that many are either unaware that the review is also cited in many instances in relation to proposed 'treatment'/therapy for LC, and then there are those who just refuse to acknowledge any correlation with all things ME/CFS.
 
A number have been contacted but no replies yet. There are more we could contact if it looks productive.
I expect you are right SS, that most LC organisations aren't yet aware of the influence of the BPS people and Cochrane on the recommended care.

If anyone knows how to contact a Polish ME/CFS organisation or any in South America, please let us know.
 
Sly Saint said:
Any feedback from the LC community?
I'm guessing that many are either unaware that the review is also cited in many instances in relation to proposed 'treatment'/therapy for LC, and then there are those who just refuse to acknowledge any correlation with all things ME/CFS.
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LC communities don't seem too concerned about ME/CFS issues unless directly mentioned. For example the recent editorial in the Scandinavian journal is getting a lot of traction because it directly targets LC. So in a perverse way, the quacks wanting to expand to LC will sink them in the end. I make sure to point it out as often as I see it on twitter.

For sure they think just as poorly about it as we do, but there are still bubble of the LC community that want to keep separate from us, no matter how many times we are bundled together, and it's generally not as militant yet, what with fewer years lost.
 
Here's the daily signature counts. There's been an increase in daily numbers just recently, I think that's the result of promotion of the petition by ME/CFS organisations. Please do encourage any ME/CFS or Long Covid association that you have links with to spread the word. We are really keen to have more organisations listed as supporting the open letter. Any organisation wanting to be listed can send an email to moderators@s4me.info.

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Hutan said:
Wonderful news, our first Long Covid patient organisation has supported the open letter:

Long Covid Support Aotearoa
https://longcovidsupport.co.nz/

Big thanks to the group and to @SNT Gatchaman for facilitating things.
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Excellent news, given Long Covid services are still being developed and many health planners are drawing on this obsolete Cochrane CFS exercise review to implement interventions that will be harmful for those Long Covid patients experiencing PEM.

It is vital that this review is withdraw or we will see, as with much ME/CFS specialist provision, decades of harm inflicted on Long Covid patients in a situation where health outcomes will be worse in those referred to Long Covid specialist provision.
 
We've made an update on the petition:

28 Sep 2023 update - over 30 ME/CFS organisations call on Cochrane for action

SEP 28, 2023 —

  • In less than a month, nearly 8000 signatures from 64 different countries
  • At the time of writing, 31 ME/CFS and Long Covid organisations supporting the open letter - including global organisations such as the World ME Alliance and Physios for ME, and organisations from many nations including Norway, New Zealand and the United Kingdom
And of course, it is not just a matter of what people with ME/CFS and Long Covid and their organisations say. An increasing number of government agencies have looked carefully at the literature and have decided to not recommend exercise therapies as ME/CFS treatments. It is abundantly clear that the concerns about Graded Exercise Therapy are not just held by a "noisy minority of activists", as has been claimed by the proponents of the therapy, but are robustly based in experience and in science.

And yet Cochrane still has the 2019 Larun et al Exercise Therapy Review for CFS on its website. Cochrane has still not given an explanation for the lack of communication for more than two years about the promised replacement review. They have not replied to the open letter.

We have started reaching out to Long Covid organisations to ensure that they are aware of Cochrane's role in the promotion of these ineffective therapies to people with post-infection fatigue syndromes.



To Cochrane staff - with the post-Covid-19 ME/CFS-like illness already acknowledged as a global health crisis, you have the ability to help improve the care of millions of people by removing a review that you have already stated is flawed.

Will you choose instead to continue to ignore these calls for action so as to not risk annoying a tiny group of people whose reputations and livelihoods are tied to the discredited therapies?


To those organisations who have or soon will support the open letter - thank you so much for what you do for the people you represent, for being well-informed and for taking the time to be part of this global campaign. The names of the organisations that have already supported the open letter are below.

To those of you who have signed the petition - we are so grateful for your support and your comments. We hope this expression of global solidarity is as affirming to you as it has been to us. If an ME/CFS or Long Covid organisation that you are affiliated with doesn't appear in the list below, please consider reaching out to them to mention this campaign.

To everyone living with ME/CFS or Long Covid and to everyone who loves, or has loved, someone with ME/CFS or Long Covid, we wish you strength and easier times ahead.



Organisations supporting the open letter as at 27 September 2023

International
Science for ME

ME Global Chronicle

World ME Alliance

Physios for ME


Europe
Hope 4 ME & Fibro Northern Ireland, Board of Trustees

ME Centraal, the Dutch ME-info channel

Bury/Bolton ME/CFS & Fibromyalgia Support Group, UK

Millions Missing France

German Association for ME/CFS | Deutsche Gesellschaft für ME/CFS e.V.

European ME Coalition (EMEC)

Millions Missing Stavanger (Norway)

Norwegian ME-Association

Norwegian ME-association Trøndelag

Norwegian ME-association Rogaland

Norwegian ME-association Møre and Romsdal

Norwegian ME-association Innlandet

25% ME Group (United Kingdom)

ME Foreldrene (ME Parents, Norway)

12ME (Belgium)

Welsh Association of ME & CFS Support (WAMES)

ME Association (United Kingdom)

ME Advocates Ireland (MEAI)

Action for M.E. (United Kingdom)

RME Kronoberg Blekinge (Sweden)

CONFESQ (Spain)


Americas
Millions Missing Canada


Asia and Oceania
Post Viral Research Aotearoa (New Zealand)

ANZMES (New Zealand)

M.E. Awareness NZ (New Zealand)

Long Covid Support Aotearoa (New Zealand)



Middle East and Africa
ME/CFS Israel
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Hutan said:
We've made an update on the petition:

28 Sep 2023 update - over 30 ME/CFS organisations call on Cochrane for action

SEP 28, 2023 —

  • In less than a month, nearly 8000 signatures from 64 different countries
  • At the time of writing, 31 ME/CFS and Long Covid organisations supporting the open letter - including global organisations such as the World ME Alliance and Physios for ME, and organisations from many nations including Norway, New Zealand and the United Kingdom
And of course, it is not just a matter of what people with ME/CFS and Long Covid and their organisations say. An increasing number of government agencies have looked carefully at the literature and have decided to not recommend exercise therapies as ME/CFS treatments. It is abundantly clear that the concerns about Graded Exercise Therapy are not just held by a "noisy minority of activists", as has been claimed by the proponents of the therapy, but are robustly based in experience and in science.

And yet Cochrane still has the 2019 Larun et al Exercise Therapy Review for CFS on its website. Cochrane has still not given an explanation for the lack of communication for more than two years about the promised replacement review. They have not replied to the open letter.

We have started reaching out to Long Covid organisations to ensure that they are aware of Cochrane's role in the promotion of these ineffective therapies to people with post-infection fatigue syndromes.



To Cochrane staff - with the post-Covid-19 ME/CFS-like illness already acknowledged as a global health crisis, you have the ability to help improve the care of millions of people by removing a review that you have already stated is flawed.

Will you choose instead to continue to ignore these calls for action so as to not risk annoying a tiny group of people whose reputations and livelihoods are tied to the discredited therapies?


To those organisations who have or soon will support the open letter - thank you so much for what you do for the people you represent, for being well-informed and for taking the time to be part of this global campaign. The names of the organisations that have already supported the open letter are below.

To those of you who have signed the petition - we are so grateful for your support and your comments. We hope this expression of global solidarity is as affirming to you as it has been to us. If an ME/CFS or Long Covid organisation that you are affiliated with doesn't appear in the list below, please consider reaching out to them to mention this campaign.

To everyone living with ME/CFS or Long Covid and to everyone who loves, or has loved, someone with ME/CFS or Long Covid, we wish you strength and easier times ahead.
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Fantastic response! :party::party::party:
Beautiful update :heart:
 
Thanks very much for promoting the petition Tom (and yes, for everything you do in advocacy) and to the kind person who has given the petition even more exposure on Tumblr.

And more good news - the ME CFS Foundation South Africa has agreed to support the campaign. Thank you.
www.mecfssa.org


We still have a gap in our geographical coverage of supporting organisations when it comes to the Americas - North, Central and South. It's just Millions Missing Canada flying the flag for that region so far.

Also oddly a gap in Australia, despite the number of Australian individual signatories on the petition being relatively high.
 
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