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See this thread for commentary on the finalised evidence review: (CDC) Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2023

I didn't mean so much the cost of the appointment, more the cost of getting to a single clinic, repeatedly. That could mean international or long distance travel, and accommodation for recovery from the travel. Travel to the clinic would make it impossible for many patients to get there...

Well, we are fairly sure that they are pretty much everywhere. Indeed, if it turned out that they aren't in a place that is inhabited by people, then that alone would probably be worthy of a study. The problem isn't where the patients are, it's where the expertise is. And, at the moment, that...

My country's Long Covid guidelines note that there is no consensus as to whether ME/CFS is associated with Long Covid.

@rvallee, is that chart illustrating just one aspect of the viruses e.g. the spike protein? I had read that SARS-CoV-2 was closest to a bat virus except that a part of it, the spike if I'm, remembering correctly, was closest to a pangolin virus. The chart above doesn't appear to mention the...

While I think avoiding getting covid-19 is a very good idea, there may be some 'correlation is causation' thinking here. People who are very healthy may be more likely to have asymptomatic or very mild infections and so not even know they have been infected. So, when you look at Healthy...

Is that true?

Yes, there's lots of overlap, and an outlier in the healthy controls. The sample size is small. It looks like there are two groups in the ME/CFS samples, some had normal fatty acid uptake values and some had increased values.

Here's a key result from the 2023 study: In activated (as opposed to resting) natural killer cells, fatty acid oxidisation is, on average greater than in controls. On the seahorse machine, they applied a chemical that stops the oxidisation of fatty acids and measured the change in oxygen...

That's bit of an unusual way to put it. I wonder what the incidence of ME/CFS following Covid-19 would be classed as - a clustered outbreak or sporadic? Again, a bit odd. There seems to be an assumption that there is one infectious agent that broke out in clusters and now pops up all over the...

Very clear, accessible and nicely presented video, and work out of Maureen Hansen's lab is typically pretty solid. Jessica Maya says 'it's a known fact that natural killer cells are less cytotoxic in ME/CFS'. I'd love for there to be a solid difference that we could hold on to, but I wasn't...

I listened to the first webinar and found it good. The scorecards largely speak for themselves and are worth a look. Much of the webinar was just going through the items on the scorecards, so I won't repeat that here. The Patient-Led Research collaborative was formed in April 2020, growing...

Post-Ebola syndrome is similar (perhaps the same? as) ME/CFS. Ebola persists in immune-privileged sites and cannot be identified from blood tests. An anti-VEGF medication was found to reduce barrier dysfunction (although presumably, if you don't eliminate the Ebola virus, the dysfunction would...

If the person doesn't have significant fatigue/exhaustion/fatigability, I don't think they would qualify for an ME/CFS diagnosis. I'm not saying that ME/CFS criteria are necessarily drawing the right lines around people, but they are what we are currently working with. One problem is that PEM...

I questioned that myself, as we created the pathway. Part of it was what was politically possible. But there was also no strong reason to separate ME/CFS out. As I said, the clinical management of idiopathic chronic fatigue (which is probably almost always accompanied by various other...

I don't think all the research teams and all the infrastructure need to be in one place. For one thing, trying to get all the great researchers and their teams that you want to be involved to move their lives to one particular place is likely to be difficult. OMF has teams in different places...

Asking the question about whether ME/CFS is a clinically useful category is, I think, reasonable. When I worked with the Heath Pathways team to make clinical guidance for doctors, the pathway we made was for Chronic Fatigue, which included ME/CFS. The reason was that doctors are faced with...

Jamie Morten, the NZ Herald journalist, has had an interest for post-infection conditions for a while now, if I'm not mistaken.

We already are a sort of subcategory of orthostatic intolerance - and so there is a rationale for treating people with ME/CFS who have orthostatic intolerance with orthostatic intolerance medicines. For all we know, some of these drugs might actually be harmful to people with ME/CFS, or at...

I guess the report could have been a lot worse. But they seem to not understand that the issue is not with not being able to blind (although there are ways to reduce that problem, by, for example having a control treatment that includes some of the non-specific aspects of a therapy treatment...