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The purpose of this thread is to provide a space for members to describe your own experiences of OI. Please try to avoid discussion of physiological explanations. You can share your personal data about heart rate, blood pressure, Nasa lean test or tilt table testing if you have any. Focus on...

I think the long term physical harm cannot be denied either. If GET were a drug treatment the yellow card system would have received thousands of reports of severe deterioration that started during or just after GET. If it were a drug, would there not have been talk of withdrawal, or at least...

It gives me nightmares thinking how the BPS people will be gloating over their win. And Cochrane people probably also gloating over their clever solution. All their BPS chums no doubt congratulating them on such a fine decision, not giving in to pressure from all those militant patients. It's...

That's very much how I would have described part of my OI when my ME/CFS was mild. I also had the grey out lightheadedness from standing up too quickly, but I think I had that before ME/CFS too. Perhaps it would be useful to have a thread where members with ME/CFS describe their OI symptoms...

Discussion on these threads might help: We had a long discussion of care plans that led up to this. Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template My understanding is that a care and support plan is written by a clinician during...

Week beginning 3rd February 2025 The Sick Times "Really pissed off": Cochrane receives backlash from advocates and experts after abandoning ME/CFS review Great article by David Tuller with a longer recap of the Cochrane saga. Two members of the writing team that was appointed by Cochrane to...

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...