I agree that publicly discussing a person and their qualifications and views feels uncomfortable. But Kay is not on the IAG, she is on the review writing team. She is the only patient on the review writing team and the ME/CFS community knew very little about her.
I think it was reasonable to...
This is the reference given for that:
4. Carruthers BM, van de Sande MI, De Meirleir KL, et al. 2012. Myalgic encephalomyelitis – adult & paediatric: International
consensus primer for medical practitioners. Available at: https://www.me-...
Article: Anti-autoantibody drug helps with long COVID, 2021
Thanks for the link to the video about G-protein coupled receptors @wastwater, very helpful.
(Sorry, I first posted this on the FOI thread, but realised it would be off-topic there.)
When we see the brazen attempts to influence the NICE Guideline, it makes me even more concerned about the Cochrane Exercise therapy review development process. Given the prevailing views about ME/CFS in...
I don't see how that is a problem. With Rituximab, some of the participants were convinced that they had improved as a result of the treatment too - but some of them, actually quite a lot of them, were on the placebo. It's ok if patients develop a theory as to what treatment they are on. Of...
It's not a matter of getting in trouble, and of course I'm not doing the treatments and I don't know what difficulties there might be in blinding. I'm not suggesting the difficulties are trivial because I don't know. It's just that if people understand how important it is to have blinded...
Thanks for the update @SNT Gatchaman
I do hope that everyone who can will push back against any suggestion that this situation is special and that double-blinded RCTs either won't work or aren't needed.
Most people with Long Covid or ME/CFS around the world will not have a hope of getting...
Another study, 2011
Effects of Trypanosoma cruzi infection on myocardial morphology, single cardiomyocyte contractile function and exercise tolerance in rats
They infected rats with Chagas, and later had them run to exhaustion. 48 hours after the exercise, they took muscle cells and...
It is not clear to me exactly what they are saying about the timeline here, but it seems that stimulation of the cells with IFN-y reduced mitochondrial membrane potential. This would result in the mitochondria not being able to produce energy. Maybe this would fit with PEM?
Thanks for posting Andy. I thought this was interesting, the findings seem similar to what I remember researchers have reported about the mitochondria of people with ME/CFS. I also remember someone, I think Ron Davis, reporting that the epigenetic profile of people with ME/CFS looked like that...
@MEMarge, given that you have spent a lot of time working through the list and thinking about the options, would you be willing to share your personal top ten choices?
Indeed, it is possible that it will be a tool to argue against BPS research. But there is the risk that the items chosen will actually leave scope for BPS investigations, and so the PSP may be counter-productive. That's why it is important that as many people as possible in the UK submit a...
It would be interesting to have the tests repeated a number of times in the same people, to see how stable the results are. My ability to concentrate definitely fluctuates, so I'm not sure about the 'reliable biomarker' of the title. Figure 1 shows that that some of the patients did as well as...
A new paper out from BPS France:
Do Anxiety and Depression Predict Persistent Physical Symptoms After a Severe COVID-19 Episode? A Prospective Study, 2021, Bottemanne et al
I think a number of posts are at cross purposes and inadvertently creating straw men arguments. Comments that members, including myself, made about very specific points have been responded to as if they applied to the whole document. I don't think anyone thinks that the RCPCH summary of the...
Sure, but the discussion started around whether the RCPCH had misrepresented the guideline on several particular issues, two as shown in bold here, and one about patient choice:
And they didn't - they quoted the guideline. They were factually correct on that, and that's what I was referring...
It's very small to be a prospective study of persistent symptoms after Covid-19 infection. A study these authors quote found 14% of patients had persistent symptoms at 3 months. With only 84 participants in this study, that's not many people with persistent symptoms at 3 months, especially not...
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