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This sounds eminently sensible. Perhaps it is something we should push for now?

In your view is there any form of legal challenge that could potentially be successfully in forcing the government to deliver appropriate services (physician led with specialist nurses and home visits rather than 'multidisciplinary' clinics staffed by OTs and physios) for pwME?

Ok so if they have successfully got the government to deliver services for severe and vs pwME, and as we fear they have asked for the wrong things, does this preclude a similar legal campaign from asking for the right things? Or make the chances of success more likely by setting a precident?

Having come across this study, I find it surprising (but perhaps not that surprising given the state of the field) that there has been no replication attempt. How do we feel about this study six years on? Do we still think it has potential as a biomarker/drug target? I think the idea that...

I'm surprised this hasn't been followed up!

Someone should tell that to a lot of the doctors I've seen in the last nine years.

Are there drugs on the market that target this pathway? Is this model positing that the abberant signalling is occuring exclusively in nasal tissues or elsewhere too? And do we think this type of issue could cause the symptoms of ME/CFS?

I was thinking along these lines earlier before you posted this! Great minds! The daratumumab example is good because it could be many different things - 2 different diseases, sub optimal drug effectiveness linked to NK cell levels, nk cell levels as a marker for something else etc. My main...

I'm also a bit skeptical about the claims of hetrogeniaty - I'm not saying there is only one illness under ME/CFS, there may well be more, but the whole 'there's 15 different subsets and all the treatments the community use actually work but only in subsets' thing always makes me a bit iffy.

See I'm more excited about what other people can do with this new paper than what precisionlife themselves are planning. Although that could pay off big time if thats how pharma get interested. But really I want to see how these data complement DecodeME and Zhang and what the smart people here...

https://s4me.info/tags/gdf15/ Previous mentions of GDF15. Proposed as a biomarker in LC last year. No difference in ME/CFS in a recent Fluge and Mella paper (Hoel et al)

So this means that 47% of people got a false negative result? If this study is bona fide what implications would that have? Is that expected/normal?

I'm sure her fellow GPs will lap it up then.

So I may be misremembering but the Sanofi OX40L monoclonal was claimed by the company to have a t cell calming/soothing effect, and JE and others have theorised T Cells may be central to the mechinism of MECFS. So I was going from that and the connections I saw iirc. But i didnt realise it was...

Oh yes that's the most important part and I forgot to mention it :banghead:

https://www.healthrising.org/blog/2025/10/27/precisionlife-chronic-fatigue-long-covid/ Healthrising article, a write up of a long interview with Steve Gardner. Some interesting information. Apparently they have identified TLR4 as of interest and so are interested in LDN. I find the obsession...

If a drug were discovered to be 100% effective and a permanent cure for all pwME (life is never that simple I know), we would still have a fight with the BPS people on our hands, because pwME misdiagnosed with serious untreatable depression or FND or whatever who have no idea ME/CFS exists would...

I think three things would be on our side in this situation. A) An effective treatment would legitimise our struggle in the eyes of doctors and the public, and the NHS will want to counter the seriously negative publicity as how they've treated us seeps into the wider public conciousness. B)...

Inspired by @ryanc97's post in the bone marrow thread, I wanted to ask about what kind of evidence we would need to proceed with a t cell soothing or depleting drug trial in ME/CFS, and how specific said treatments would need to be. I know you have mentioned Campath in the past, and daratumumab...

Two papers mentioning TGF beta today! We haven't talked about the idea that abberant cell signalling could be occurring in the nose. Perhaps these findings support the case for more tissue biopsy studies generally? Personal note- Ever since I got covid at the tail end of my ME/CFS...