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They just change their explanation to some rubbish about disregulation, and sail merrily on telling us to find our baseline and then increase activity.

Yes, and they can't claim they were unaware of that survey, since we quoted data from it in our harms letter last March, which they promised to include in their investigation of their complaints.

Thread here: Metrodora Foundation

The petition is now at 15,547. It's also worth reading and liking the comments being posted on the petition. I try to keep up with reading new comments. They are a steady reminder of why we fight on. Here are a few recent ones: Mona Loofs-Samorzewski 2 days ago I have had CFS for 32 years and...

Given that there are males and females across the full range of severity, and any individual can experience the full range of severities over time, I don’t know how it can be claimed ME is more severe in one sex or another.

Did the infrastructure grant apply to US universities?

We have a thread about Remission Biome here: https://www.s4me.info/threads/the-observer-guardian-article-does-the-microbiome-hold-the-key-to-chronic-fatigue-about-patient-led-research-group-remission-biome.34076/

It's a very short timescale for an ME/CFS treatment study. 2 weeks of treatment and 2 months followup. I reckon you could get the same set of subjective outcomes over 2 months from LP with true believers as participants. It can be surprising how much one can persuade oneself something has...

I'm assuming your 'doesn't hurt to try it' is about research, not an encouragement for individuals to ask their doctor for it. There's a pretty scary looking list of side effects, and it hasn't been trialled in ME/CFS.

Any volunteers? I'm overcommitted with other stuff.

It's almost identical with much of the document we've already complained about and had taken down. Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template Maybe all we need to do is write to AfME and point that out, with a link to our...

Oh dear. I wonder how many other such documents AfME still has. I hoped getting rid of the recent one cleared up the problem. I was wrong.

That looks like another Peter Gladwell document. It has some of the exact same wording as the awful so called Care and support plan we protested about and AfME removed their support from and apologised. So I assume Gladwell produced it and has, or had, permission to use the AfME logo on it...

I guess now there isn't an active project happening, they reckon anything we and others submit can be simply rejected by saying the subject is closed. And dating the new copy of the old review 2024, they have done what the BPS lobbyists want, so those complainants have won and will stop nagging...

Our understanding, as we said in today's complaint, is they have broken their own rules.

Hilda revealed in one of her updates that Cochrane had spent over a year investigating a complaint from exercise for ME/CFS supporters. She also mentioned in that update some other complaints that had been investigated. We have had nothing official from Cochrane except standard 'we are still...

The S4ME committee has today submitted more complaints to the Cochrane Complaints process. The submission is posted in full over two posts here: S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review I won't copy it all here, since it's long. This is the...

To keep this thread focused on the thread topic, some posts have been moved to a new thread: Can we influence trial and review methodology, eg open-label trials with subjective primary outcomes?

Interesting idea. Maybe an open letter to Cochrane addressing the question of relying on subjective outcomes in open label trials and the flaw in the Grade system of only downgrading rather than rejecting such evidence in reviews.

15,281 signatures on the petition.