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This poor women was having many seizures a day. At followup several years later, she was still having seizures, but had learned to tell when they were coming, and sit down. Some highlights from the paper: This bit was particularly remarkable - the authors acknowledge many people get better...

I would have thought an important 'p' word in the 'biopsychosocial clinical formulation' for neurologists to be up to date on was profitability. As in, how can you produce maximum revenue and honours with the least amount of effort? The move to online courses was a major advance in the history...

A number of posts have been split to create a new thread in the Advocacy forum: United Kingdom: Independent SAGE

Yeah, this made me happy. Quite a bit of the detail was speculative, but the message that there is a biological underpinning, and that there needs to be more research came through really well. Thanks for sharing it @Art Vandelay. The Project is a tv program watched by a lot of people -...

I had reflux for a while after the onset of ME/CFS, but it went away. I don't know why. I remember it wasn't pleasant. I wonder if it might be part of the post-infection syndrome - some malfunctioning nerves causing things to not work right? From what people have said here, it sounds as...

So Knoop's reply that the actimetry is only used at the beginning of the trial to divide patients into two groups based on activity level seems to be quite wrong then. I wonder if he made a mistake due to not being very familiar with the protocol and implementation of his own trial, or if he is...

So, they are looking at autoantibodies reacting against proteins outside cells, in people with Covid-19: People with Covid-19 had a higher level of overall reactivity to their own proteins than uninfected people and people with SLE, (but a lower level of overall reactivity than people with a...

That's another article in Nature that doesn't psychologise or downplay the problem of Long Covid. There was a November 2021 Nature article Do vaccines protect against long COVID? What the data say that noted the difficulty in studying the question because so many of the Covid infections...

We've moved a post from this thread to create a new thread: Does Covid-19 vaccination reduce the risk of Long Covid?

I like that they noted that immune response profiling has to go beyond the old 'cytokine levels in peripheral blood' analysis. Tissues need to be studied and more detail recorded about the various immune cells. I also like the recognition in the article that Long Covid is an important problem...

Viral persistence is one hypothesis discussed, and surely one that could be investigated fairly easily. They note that they found CoV-2 in the gastrointestinal tract of some individuals at 4 months, although these individuals didn't have Long Covid. It seems plausible that some ongoing...

The diagram in the Nature article provides a good summary of the ground covered:

The article refers to a study that has good controls - we have a thread on the study here Immunological dysfunction persists for 8 months following initial mild-moderate SARS-CoV-2 infection, 2021, Phetsouphanh et al

2022 Twitter thread where people express support and sympathy for ME/CFS patients Dr Lea Merone of the University of Queensland notes in a twitter thread She may be a useful ally for some advocates.

It's interesting to see this study from Columbia (the country). It's not clear from the abstract whether there was any comparison with post-Covid-19 patients without lingering symptoms. I can't see how to look at the whole paper without paying for it.

There doesn't seem to be a lot of evidence for the idea that there is a lack of dopamine binding in the brains of fibromyalgia sufferers yet. These authors appear to be trying to build on a 2006 study with just 6 women with FM, and the abstract doesn't say which brain regions were found to be...

Interesting to read this justification for using a wait-list control in the trial design, in response to a peer reviewer asking for such a justification: They seem to be suggesting that a placebo intervention that doesn't have an effect might elicit 'so-called resentful demoralisation'...

From an email: "Emerge Australia’s Online Community Groups pilot project is in its final phase! We are pleased to announce that our final groups are now open for bookings. Now is the time to confirm your place, booking in for a peer support group that suits you. We have groups for people...

https://www.japantimes.co.jp/news/2021/10/07/national/long-covid-japan-patients/ You may need a free account to read it. It talks about the rise in popularity of kampo medicine (Japanese traditional medicine with herbs) as a treatment for Long Covid.

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