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.
