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This thread is for a list of sub-national Australian ME/CFS and Long Covid organisations. National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National. ME/CFS/FM Support Association Queensland - http://www.mecfsfmq.org.au - mefmtba@bigpond.com...

Thanks very much @LarsSG. They have now been sent an email about the campaign.

Canadians, we are trying to work out what ME/CFS and Long covid organisations we should contact regarding the Cochrane Exercise Therapy Review campaign. Millions Missing Canada has signed. Thank you. Canada AQEM – Association québécoise de l’encéphalomyélite myalgique - we haven't had a...

I watched the Diane O'Leary presentation on the ethics around medical care for people with ME and LC. There was no mention of CFS, and not a whiff of retaining a CFS label for psychosomatic people. Perhaps some of the things said on this forum did make a difference. It seemed reasonable stuff...

I watched the Amy Proal presentation on viral persistence - just over 30 mins. It was well presented and easy to follow. Nothing new for people here I think, but there are some nice links to papers e.g. a list of all the Covid-19 papers finding viral persistence. One key idea is pathogens...

It's possible that some of this has already happened, with the UK NIHR seeming to have stepped back a bit. I think I read somewhere, either directly or between the lines, in Cochrane's online material that their big announcement of 'patient-centred' stuff back in 2021 was in response to...

@RedFox Check out this thread: Post mortem tissue donation and autopsies (Members only) There's a post there about the US NIH NeuroBioBank. People can sign up to make a directive for tissue donation. It was mentioned on a NIH ME/CFS call.

This is important, good on the MEA. It's a difficult thing to think about, especially given the relatively young upper age limit. Relevant threads: Post mortem tissue donation and autopsies ME Association: The UK ME/CFS Post Mortem Tissue Bank and Tissue Donation

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...

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

We have posted this update on the petition: PETITION UPDATE 22 Oct: The office of the Editor-in-Chief replies OCT 21, 2023 — In our letter of 8th October addressed to the Chief Executive of Cochrane, we asked for "clear answers to the following questions: 1. Will the 2019 Larun review that...

And more great news from Sweden, another organisation signing: RME Stockholm Thank you very much. With each organisation that signs I think of the people who care about this issue and want change. I find it very motivating. That brings us to 54 organisations. I wonder how many ME/CFS...

Some more excellent news from Sweden - two more organisations signing: RME Väst #MillionsMissing Sweden Thank you to the advocates (Mango :thumbup:) involved in making that happen.

It does sound as though you are right: What can we learn from results of the RoB 2 comparison study?

Very interesting, thanks Arnie Pye. It's sad to hear about the standard treatment for ME/CFS there in Valencia. But yes, at least this man's doctors remained alert for symptom changes and did do a lot of testing, including the genetic testing. I think my symptoms could be written up to...

Spanish report

I get the sense that it is some organisations with connections to people on the IAG that are unwilling to support the campaign, perhaps because they think everything will be ok. Yes, the lack of communication from advocates inside the process is really odd. But I do note that none of the...

We have created a thread for discussions about if and how to report about claims of cures: Responsible ME/CFS journalism - how to report about treatments?

Post moved from another thread “Your Blood is Black”: My ME/CFS Experience with HELP Apheresis in Germany On the question of whether a treatment that is reported to be useful by one or more patients or promoters should be written about: There are a lot of clues that can help us work out if...

Pretty impressive - looks like lots of govt involvement.