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Crosspost: It was going so well until about the 8 minute mark: "We have not yet identified any one cause, and it’s possible M-E-C-F-S has more than one cause. Some patients report they had a common infection like the flu and then just never fully recovered, and instead developed more long-term...

This study is a perfect example of how rubbish research keeps turning up to influence public opinion. People don't read past the abstract study title. And then it gets taken as truth, and referenced in science journals (by the Chief Medical Officer of OMF in a paper discussing a hypothesis...

A post with a twitter thread about famous people with Long Covid has been moved to Well-known, famous people with Covid-19 and Long Covid

Yes, it's possible that it's just that - attention bias. But on the days when I did not record tinnitus, I really don't think I had it. There was either a high pitched note, or there wasn't. It didn't feel like a thing I could choose not to notice. Looking at the data a bit more, I started...

n=1 Looking back at my records, here's data from 95 days where I recorded a whole lot of symptoms and general wellness from fairly early on in my illness. I recorded the presence or absence of tinnitus. For wellness, ok - did not have to retire to bed or the sofa permanently until the evening...

On Uldis Berkis:

Authors: Diana Araja *, Uldis Berkis and Modra Murovska Institute of Microbiology and Virology, Riga Stradins University, Latvia;

Latvian authors About ME/CFS: There's a lot more paragraphs about ME/CFS there, roughly just saying - 'some parts of Long Covid look a lot like ME/CFS, but we can't say for sure yet and should do lots more research'. There's mention of autonomic dysfunction and POTS. This, about...

Yes. Thinking about the investment fund analogy, I think a problem with OMF is that it has pushed the 'celebrity researcher' angle too much, most obviously with the Davis/Dafoe family, but generally. If a fund manager is reporting to investors, they shouldn't focus on the project managers...

Yes, that video is a bit concerning, especially in the context of the vagueness of reports from other OMF funded researchers In my past life, I was involved in investment funds. Institutional investors could be brought in on a good story, hope and having people that seemed to have relevant...

I see the tag line of OMF is 'Leading Research. Delivering Hope'. I'm not sure how long that has been there. As Mango said a while back, for many of us, hope that doesn't harm needs to be based in reality. Hope is lost if there is no credible evidence of progress. I would hope that the aim...

Recommendation for standardized medical care for children and adolescents with long COVID [German]. Statement of a ..., 2022, Töpfner et al Looks like influential guidance on the management of Long Covid in young people. It will be interesting to hear what our German members make of it.

'Will I ever be cured?': The agonizing long-term effects of COVID-19 Sayako Akita , Feb 2022 Article in The Japan Times Covers EAT (Epipharangeal Abrasive Therapy), which discussed more here: Epipharyngeal Abrasive Therapy (EAT) Has Potential as a Novel Method for Long COVID Treatment, 2022...

Yeah, lots of problems. Still, it's interesting to read about this for a range of reasons. These Japanese researchers are recognising that ME/CFS is 'a frequently mentioned symptom of long Covid'. They recognise that no standardised treatment has been developed for ME/CFS. They suggest that...

A post about Dave Navarro has been moved to Well-known, famous people and Covid-19 and Long Covid

I had the same feeling. It would be good if researchers were clearer about where funding has come from for studies. I mean, I do understand that doing tangentially related studies can help fund infrastructure and staff, and help keep teams together. And results from those studies might happen...

Thanks @Simon M. The recent fibromyalgia study I mentioned above said something very similar that had had me wondering.

There's the NZ Brain Institute in Christchurch, New Zealand. A study there might be relatively cheap. https://www.nzbri.org There's an MS specialist who is an active researcher there, and the national MS Society is pretty well set up. Maybe govt funds can be obtained to add a Long Covid arm...

That sounds exciting @SNT Gatchaman. Are you excited? Spanish and UK researchers.

A 28 minute watch. There isn't a lot that is particularly meaty. Here's a summary of the bits I found interesting. They have a substantial biobank of longitudinal samples from herpes simplex encephalopathy (HSE) patients - CSF, blood, urine, brain imaging, from infection to 2 years. They are...