Search results

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...

Only 48 patients, and we see these kind of papers all the time. But TGF beta coming up here, which as we discussed yesterday has been seen increased in ME/CFS before. As well as c5a and IFN-a. Interferons obviously being discussed a lot lately, especially by @jnmaciuch and @Jonathan Edwards...

The PACE trial method of rigorous study design! If you have a result you don't like, duke the stats so it goes away!

It has just struck me that what the psychobehavioural school have built, in these apps and the BACME style services and all of it, are burecratic patient crippling machines. That is not what they call them of course, but if we take the view that the purpose of a thing is what it does, that is...

How do we ever turn this ship around? So much money and time has and is still being poured into gaslighting patients and pursuing a treatment approach that will worsen them. I despair at this point. They do not listen to the science. They do not listen to the patients. They just want to keep...

I cant remember, do we have evidence of altered TGF beta in ME/CFS?

Could this potentially tie in with the BTN2A2 hit in DecodeME? According to JE's comment here it is expressed in 'breast epithelial cells and milk fat globule membrane' I have juat read that this pathway is implicated in a bunch of different cancers, and I have heard cancer is more common in...

I think it's quite possible RECOVER would have found even worse ways to spend this money without PPI, given the first round of trials. There were many suggestions on the big list of drugs that looked like much better bets than bloody LDN and GLP1.

Have many GWAS/WGS studies been conducted in Alzheimer's?