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I can't access this paper. What do people reckon about the idea of Tregs not doing their job of controlling an inflammatory response to exercise properly in people with ME/CFS? What would prove that idea wrong? I have been interested in the idea of rhabdomyolysis as part of ME/CFS pathology...

Problems with cognition are termed 'mental health difficulties' In the next paragraph though mental health means something different (negative affect) because

Ugh Because suddenly developing a debilitating disease that has no treatment and that a substantial proportion of the medical profession* and people in general think you are just being a wuss about is not at all worrying? *mis-informed by papers like this that play up all the prejudices...

To play devil's advocate, it's a big ask of employers, isn't it? Accept the word of the employee that they have this disease that limits their productivity. And then make all sorts of changes that actually won't work for a lot of jobs and workplaces or that at least impose substantial costs. I...

Here are the latest numbers by country - 70 different countries, without counting the UK nations separately:

From having had three people in my family with ME/CFS (onset for all three at the same time, and therefore almost certainly the same cause, the same disease) and having had ME/CFS for nearly 11 years now, I observe that: * individual experiences with the same disease do differ e.g. impact on...

Information from new forum member ONG PEM: ... We are delighted to have joined this forum and to be part of such necessary and important initiatives for all our group of people suffering from Myalgic Encephalomyelitis. ... The Association of People with Myalgic Encephalomyelitis, PEM...

Yes, when researchers start reaching for the 'sub-type' idea post-hoc it raises skeptical thoughts. We've seen some pretty bad papers supposedly reporting on ME/CFS subtypes. That said, it is to be expected that cohorts of people diagnosed with ME/CFS will include some people who have other...

We've seen that particular recipe for generating positive results in ME/CFS trials from Japan before. I can't recall it being picked up by researchers in other countries wanting to make probably ineffective treatments appear good. I imagine it's because most researchers and health systems...

Oh, that does sound hopeful. My fingers are crossed that it works out ok.

I've just found this paper. I was in the study, I didn't know that the results had been published. I was in the 48 hour 2xCPET group. It's a really small study. Only 11 participants with 'ME/CFS' in total randomised to either a 48 or 72 hour repeat CPET. And we've since found out that one...

Great to have CFS/ME Associazione Italiana joining the campaign - the first Italian organisation to sign as a supporter. Grazie, Giada Da Ros. Thanks also to Sian at the World ME Alliance for her ongoing help to promote the campaign and to connect people.

Thanks to AfME for promoting the petition again - there's been a noticeable uptick in signature numbers from the UK today.

Just looking at the something in the blood experiment: 5a and b. Rates of oxygen consumption in a Seahorse analysis - black is healthy controls; red is ME/CFS 5c and d. Rates of lactate production in a Seahorse analysis 5e Calculated descriptors of mitochondrial respiration based on...

There's also this thread about a 2020 OMF announcement, it has some good commentary about Mestinon. OMF to launch clinical trials on Mestinon & Kynurenine, post-COVID19 study If these studies have been completed, perhaps someone can post links on the thread.

Another thought, given the apparent high variability in CPET results depending on prior exertion, we could expect that there would be a lot of noise in a study that looked at the change in results from one CPET at time 'x' and another CPET at time 'x + approx two years'. You would need to be...

We have a thread discussing the utility of LDN here: Experience with LDN? We have a thread discussing the utility of mestinon here: Mestinon There is also this very recent thread Exercise capacity in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) treated with long-term...

It's like AI software had a go at writing about Long Covid - some things right, some things wrong, some conjecture presented as fact, an uncritical reflection of 'what people are saying'. I guess it is hard to write about Long Covid well because so many things are still vague. I see that the...

As much as I'd love mestinon to be an answer, and as much as I want Systrom to keep investigating, and as much as I think a problem related to acetylcholine is plausible, the result isn't overwhelming. The sample size is small: 37 in the treatment group, 16 in the control group The effects are...