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

For those on Bluesky (alternative to Twitter), I have just posted this. Please repost to help spread the word.

https://bsky.app/profile/ozfish.bsky.social/post/3kcdfibriis23

Copy of post:

 

Thank you very much to RME Jönköping for signing the petition and supporting the campaign.

 

Here's the cumulative graph of petition numbers over time. You can see that numbers are still climbing steadily. 10,000 is the top line on the y axis scale.



Given the substantial number of Canadian signatures (778), I think we should be able to get more organisations from there listed as supporting the campaign - we just have one so far. If anyone has ideas, or is willing to contact the Canadian regional organisations, please post on this thread or contact a moderator.

 

A huge thank you to every one of the 9000 people who have signed the petition so far.

 

That’s good news.

When we get new organisations signing and sharing the petition numbers get a boost. It’s also helpful for organisations that have already shared on social media to share again after a couple of weeks as people don’t get to see every post.

 

I think in terms of national level organisations we are doing really well, outside of the US. I'll calculate a rough percentage a bit later.

In terms of sub-national organisations, I think there are still a lot of UK local organisations that we could pick up just by contacting them. We aren't doing at all well in the US - we aren't even getting replies, although we could try harder to find more organisations. I'm not sure what the situation is with regional organisations in France and Germany - maybe members from there could help us identify regional organisations to contact?

We are missing some national-level organisations because they are part of EMEA, and EMEA has indicated that having patient reps on the IAG in its member organisations is a factor in it choosing not to support the campaign. Some organisations that are members of the EMEA have not felt so constrained and have signed, but many have not.

It is hard to imagine a confidentiality agreement that not only stops the individual from expressing concern, but also stops an organisation that they are part of expressing concern (as the person could abstain from any vote), particularly given that Cochrane noted very clearly that members were appointed as individuals. It is even harder to imagine how the confidentiality agreement applying to a person in Organisation A could also affect the Umbrella Organisation that it is part of, as well as affecting Organisation B that is another member of the Umbrella Organisation.

And yet, if I am understanding things right, organisations are feeling constrained, not only in EMEA and its member organisations, but also with ME/CFS Australia and its member organisations. I think there may also possibly be something like that happening with #MEAction in the US which has a staff member on the IAG, with its member organisations and other US organisations following its lead.

Of course, I am probably getting it all wrong, as we aren't being told what the actual situation is and I am just completely guessing. It's quite possible that the organisations that have reps on the IAG are just happy with how things have been going and with the ongoing Cochrane stamp of approval on the 2019 Larun et al review, and see no need for the campaign. If someone from the various organisations would like to explain or tell me I am wrong and that the fact that organisations don't support the campaign has nothing to do with the confidentiality agreements of the IAG members, that would be great.

But, in any case, yes, despite that, the global response of ME/CFS organisations and the numbers of people who have signed the petition and left comments has been damn impressive. I don't think BPS proponents can ever claim again with any sort of legitimacy that exercise therapy is something that only a noisy and tiny minority of activists thinks doesn't work for ME/CFS.

 

For international and national level organisations, pretty much 50% of the ones we know of have signed. There are some assumptions in that - e.g. I've treated OMF as one organisation as the decision not to sign for now was made centrally, even though there are Australian and Canadian branches. They are one of the ones who think the forthcoming IAG announcement will make things all ok.

That percentage is excluding Covid/Long Covid organisations as we don't have a good understanding of how many of those are out there.

BACME have refused to support the campaign, which is not unexpected given their equivocal stance on exercise therapy. Doctors with ME wasn't willing to support the open letter, but did commit to promoting the petition.

But yes, as I said, the connections between IAG reps and organisations seem to be quite a block. The EMEA seems to be influencing the responses of many of its member organisations and it isn't willing to promote it to its members. Invest in ME is currently part of that alignment. IACFSME is another one where there is that IAG rep connection and, so far, an unwillingness to support the campaign.

There are some organisations that I think would be willing to support the campaign, but we just haven't found the way through the contact form on the website or the info email address to the right person. For example, ME/CVS Vereniging in the Netherlands and the Swiss organisation. Some organisations seem to be thinking about it for a long time, with engagement from us including zoom calls to give background but still no commitment. They may be hoping that the forthcoming IAG announcement will make everything ok.

I think there is potential to get considerably more of the international and national organisations supporting the campaign, especially if their members contact their boards and ask them to.

 

Great tweet @Andy, thank you.

 

LocalME comprises 52 local support and advocacy groups across the UK as well as outside UK. https://groups.io/g/LocalME
Thank you for signing and supporting, and for the help of forum member @Suffolkres

 

Thanks, @dave30th.

One small correction at the beginining. Our first letter was sent on 28th August, not 4th September. It was the petition that was started on the 4th Sept.