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I had forgotten just how bad this is. They have a whole artcle on their dysreguation model which as far as I can see tells us nothing. It's basically here are some physiological systems, each with a pretty diagram, and a list of symptoms that arise from dysreguation of that system. I find it...

BACME Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) October 2020, updated 2022 https://bacme.info/wp-content/uploads/2022/05/BACME-Position-Paper-on-the-Management-of-ME-CFS-October-2020.pdf We have probably discussed this before. I want to...

Is it normal for people with physical illnesses to have all this prying into their psychology, past and present, their social situation, and their behaviour?

Ah yes, the old familiar 'my quack training is better than their quack training'. Twas ever thus.

I think we've been told that's not happening. Might be wrong.

The major reorganisation Cochrane included in their many excuses for the delays in the process to produce the new review was caused by the UK NIHR ceasing funding Cochrane.

Not any more, I understand.

I can't think of any reply you would get other than that Cochrane is an independent charity and any complaints should be addressed to Cochrane, their funders or the Charity Commission. I can't think of anything an MP could do with a parliamentary question, but I'm no expert.

Is it just me? (I'm crashed, so it probably is). I'm struggling to follow which 'they' people are referring to.

That is so not what ME/CFS is.

That's a well argued response, making the Garner critique look stupid.

And of course the make the most of citing the Walitt 'effort preference' term 9. Walitt, B. et al. Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome. Nat. Commun. 15, 907 (2024). And they reference the Cochrane review, though strangely citing the 2017...

Thanks all who have contributed so far. I'm keen to hear more about all aspects of your OI, not why it's happening in terms of physiology or comparing ourselves with others so much as your own experience. I agree, EndME that the temporal aspects are an important part of the picture for each...

Sadly the authors of it sold it in their blurb as a key part of producing a toolkit for clinics for implementing NICE. I just hope the MEA have seen sense and called a halt to funding.

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...