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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.

The Help Clinic must be making huge amounts of money. I don't know if the people running it believe in what they are doing or not. I don't even know for sure if what they are doing has any basis, although I seriously doubt it. For those of us who wouldn't dream of charging desperate sick people...

Indeed, you nailed it @rvallee.

A shout out to the person from Latvia who signed the petition recently - bringing the total number of countries that we have signatories from to 72. That does include some very small entities that I'm not entirely sure qualify as countries, but the Change.org data analysis tool separates them...

Wonderful, Mike. 47 people in Switzerland have signed the petition which is pretty good. We'd love to have a Swiss organisation join the campaign. It would be great if someone there wanted to give us updates on their activities in the News from Switzerland thread from time to time too. I...

I think what they have done is as fine an example of desperate cherry picking as you will see. Bear with me as I try to explain. PSC is the primary outcome - the three activities chosen by the participant as being important to them and impacted on by their health condition. Table 2 gives the...

I note in the waterfall diagram that one of the people allocated to the treatment is shows as 'deceased'. That raises the issue of harm. The word 'harm' does not occur in the paper, and the methods section includes nothing about monitoring harm. and yet this sort of treatment has the...

I thought this was interesting - each patient identifying activities where they experience limitations, and then reporting how much limitation they experience. I don't have a problem with it, as far as subjective measures go. Wow. These people don't seem to have a problem in saying out loud...

Good grief, there truly is a community for everybody. And it appears there might be 35 of them (one also provided training to the 34 who did the therapy).

I can picture authors and others of their ilk mentally making note - 'must do better with screening people who enter the trials to ensure only people who will believe are included'. As it was, one of the exclusions was 'psychosomatic therapy not suitable for the patient, according to the GP'...

Authors and institutions: I think it's important to note who these people are who can write highlights that both include an acknowledgement that their treatment did not work for a set of conditions while simultaneously saying that their treatment is important for improving the conditions.

Unfortunately for the relevance of this 2014 study, there is now RoB2 https://methods.cochrane.org/bias/resources/rob-2-revised-cochrane-risk-bias-tool-randomized-trials#:~:text=Version%202%20of%20the%20Cochrane,design%2C%20conduct%2C%20and%20reporting. So, it's really easy for a Cochrane...

Just looking at the Cochrane Norway website, I note that they are still saying that wearing masks make little to no difference: https://www.cochrane.no/news

Wonderful, RME Skåne is supporting the open letter. Thank you! 50 organisations.

Are the UK offices of Cochrane the only target with respect to challenging their actions as a charity? Is there scope to query the Norwegian branch's performance as a charity? Or another branch? Is that up to date, I forget which university was to be their new home. Perhaps we can make...