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Such emotive article/study to read, they truly listened to the people with Long Covid and captured the essence of living with it. Much recognition.

Has anyone asked them to do a similar study as this one, but on/with people with ME? https://www.tcd.ie/news_events/articles/2024/trinity-team-discovers-underlying-cause-of-brain-fog-linked-with-long-covid/

Simon Wessely: ”I would hazard a guess that the most fruitful area of research will come from a combination of neurosciences and psychology, and will be focussed around the sense of physical effort and effortful cognition, but we shall see.” (From @Hutans post above.) Seems very much in line...

I hope this information reaches the Long Covid community as well, so they can make informed decisions about participating in Walitts research.

I see, that’s a big problem. But what would happen if people with ME and LC refuses to participate with him in the lead?

This is so important! Wallitt must never be allowed to get near ME and LC research again and we patients must say no to participate in his research. He has his own agenda and it will never serve us well.

I totally understand. I have gotten the neurological tests as well and genetic tests. But no result. The symptoms are so weird so it was worth looking into though in order to exclude other things. Too bad NSAIDS isn’t possible for you. From what I understand it’s more likely that prostaglandins...

Michelle, those seizure-like episodes where the muscles in the face and neck can’t be controlled happens to me as well. I used to have them occasionally, especially when I crashed, got a virus or right before getting my period. But during menopaus the episodes got more common and when it was at...

It might be too late to add to the questions but one thing I noted was that my MCAS got a lot worse during menopaus. ME in itself was pretty much the same, but due to insane MCAS reactions my condition overall worsened severely.

She was improving after treatment, did more activities but got a short setback after a viral infection. She continued to improve after that and was able to walk 10 000 steps compared with the 2000 steps she was able to do before treatment.

Can elevated amount of circulating fibronectin be the Something in the Blood that Davis was looking for? The signaling protein? “Fibronectin (FBN) is an extracellular matrix (ECM) component that, through binding integrin receptors of the cell surface, acts as a key player of the communication...

So sorry to hear this, Hubris. You mention diarrhea and itching everywhere. That sounds like it might be a histamine (MCAS) reaction? You had tried many anti inflammatory drugs, does that include antihistamines? Otherwise that might be something to try. And other, natural antihistamines together...

Swedish Long Covid research published in May 2022: https://pubs.acs.org/doi/10.1021/jacs.2c03925 https://svt.se/nyheter/lokalt/ost/forskarnas-upptackt-ett-mojligt-svar-pa-covid-19 Copied to the thread on the research paper this article is about: Amyloidogenesis of SARS-CoV-2 Spike Protein...

Swedish Long Covid research published in May 2022: https://pubs.acs.org/doi/10.1021/jacs.2c03925 https://svt.se/nyheter/lokalt/ost/forskarnas-upptackt-ett-mojligt-svar-pa-covid-19

TV interview with Dr Bettina Hohberger: https://m.dw.com/en/tracking-long-covid-in-the-blood/av-60658430?fbclid=IwAR2QOJfUM2qK4Ssfe8BfPSbzxAZapP51SGAAOvJV9NdpfXCb9-kLS0wXpJY

Don’t know if this has been posted before? https://m.dw.com/en/tracking-long-covid-in-the-blood/av-60658430?fbclid=IwAR2QOJfUM2qK4Ssfe8BfPSbzxAZapP51SGAAOvJV9NdpfXCb9-kLS0wXpJY

Exactly what I’m thinking! There’s no way of knowing, but it sure raises a lot of questions. Edited to say that I suspect autoimmune issues in my case since it runs in my family. I usually get unwell from viruses and it can take a couple of weeks before I return to baseline.

I share your experience and your thoughts, Peter. I have moderate ME but became bedbound after the first shot of Pfizer’s vaccine. It lasted for about three weeks. After my second shot though I was doing activities the next day. Had more sore arm after the last shot, but other than that I was...

Could this have anything to do with anti-ETAR antibodies? Or would that be totally irrelevant for this matter?

Perhaps this is of interest regarding fibromyalgia? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344444/