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Title: Cutaneous α-Synuclein Signatures in Patients With Multiple System Atrophy and Parkinson Disease Authors: Christopher Gibbons, Ningshan Wang 1, Sharika Rajan 1, Drew Kern 1, Jose-Alberto Palma 1, Horacio Kaufmann 1, Roy Freeman 2 Abstract: Background and objectives: Multiple system...

That is certainly my experience.

This is excellent, thank you Joan for writing it.

I agree the 85% response rate is fantastic - unheard of really. Decode ME is such a brilliant study. Posts about the MS study discussed below have been copied or moved to a new thread On a related note, I found the following UCSF and University of Cambridge study on MS, published yesterday...

Post copied from the DecodeME thread: I agree the 85% response rate is fantastic - unheard of really. Decode ME is such a brilliant study. On a related note, I found the following UCSF and University of Cambridge study on MS, published yesterday, interesting: Scientists identify first genetic...

Thank you to everyone who has posted - especially the longer posts which really get to the heart of the challenge and which I suspect reflect years of prior reflection on a subject I'm relatively new to. I'll be quiet on this thread for a couple of weeks but plan to take some time away from...

Dear all, I'm keen to sound out opinion on what the ideal ME/CFS research institute would look like. Much of the forum discussion is (rightly) about what the medical community should be focusing on in terms of ME/CFS biomedical research, but this thread is about the 'how' - not on a technical...

Thanks for sharing. I find this area of research hard to follow in the details as a non-expert but my intuitive sense/lived experience of ME/CFS always brings me back to this sort of mechanism as a likely candidate. If anyone has the knowledge and experience to provide informed comment on this...

This is an interesting area. Does the DecodeME project gather data through the online form on past hospital operations like removing appendixes or tonsils? If so, it would be easy to compare the incidence in an ME cohort with the average population.

Does anyone with more medical knowledge than me know what "fungal translocation" really means in this context? Any views on the credibility and/or usefulness of this tentative finding? Thanks!

Thanks so much for this - really interesting. I also strongly second Chris's point above - namely that muscle "weakness and "malaise" are completely distinct experiences. I'm not sure I actually suffer from any underlying muscle weakness, once the impacts on muscles of general ME/CFS symptoms...

Am I right in thinking that this study essentially builds on the following more anecdotal study done back in 2003: https://pubmed.ncbi.nlm.nih.gov/14567934/ I wonder why the long (19 year) delay in further research in this area? Also, does anyone with more medical knowledge than me have a...

The Economist leads its mailshot today with a new article on Long Covid: www.economist.com/the-economist-explains/2022/04/27/what-we-know-and-do-not-know-about-long-covid I can't currently access it but would interested in opinions from those who can.

FYI the Guardian has a long piece today on the paper published in Science: Can we vaccinate against Epstein-Barr, the virus you didn’t know you had? | Science | The Guardian I don't suppose, when the team from Harvard TH Chan School of Public Health did their big longitudinal study (10m blood...

Thank you.

Agree with the comments above. I suppose small biotech companies like PaxMedica have an interest in conflating Long Covid and ME/CFS because it implies a larger pay-off if the drug is found to work which helps raise $$ from investors. The problem, as others point out, is that this study's...

Thanks for this post - this is the truest thing I have read on ME.

Thanks for this thread Rosie - I find it useful and I guess different people will draw different things from the various examples. 11 years 3 years - mild to moderate with crashes (some symptoms occurred during this period that went away in later years, e.g. a phantom burning pain in my...

I hope this question isn't too far off topic, but in today's Financial Times there's a detailed article on Long Covid (link below) which says halfway through "There may be a genetic predisposition that determines who is most likely to suffer [an immune response triggering Long Covid], so...

I suspect they think of ME as a cousin of treatment-resistant depression and are exploring whether something similar to electroconvulsive therapy (i.e. “shock therapy”) can be applied, just toned down and re-branded to sound less unpleasant. All a bit Nurse Racthed and it would be great if there...