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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?

Whatever we want to call POTS and MCAS, we need to separate them as subgroups from ME/CFS and measure when they appear together or separately if we want reliable study/trial results. Unless we want to claim that whilst our condition is legitimate, pwPOTS or MCAS are imagining theirs? I don't...

This is so relatable! Sorry you experience this crap too!

Mine do this too. It is worse at night and much more noticeable when I have eaten foods like curry or chilli. Perhaps I need to see if it happens after a non spicy high histamine food like canned fish.

Thanks - I do also get strange fluctuations in body temperature, and overreactions to heat and cold. So perhaps that makes sense. I have never had any reactions like this to chilli before covid/severe ME (i deteriorated and then got covid shortly after and got even worse) and was a big fan of...

I have allergic type symptoms too since becoming severe/getting covid, and hands going bright red after I eat high histamine foods like curry. I decided to take it seriously after two occasions where I ate a heavily fermented food (kimchi on one occasion and yellow bean paste on another) and had...

I'm sorry to hear Jo continues to be so unwell. Her unpublished data sounds interesting, but I'm curious - how does a pathology involving antibodies to signalling proteins differ from a classic autoantibody pathway?

All of this for one child, and yet all of the children sick with ME and LC are shunned and put through 'treatment' programs that just make them sicker. The dichotomy is crushing.

Anyone got any word on whats going on there? Last I heard Hwang et al were moving ahead with a small drug trial...

That thread is definitely a bummer! I don't know whether you saw these comments from JE though: So there is some hope in amongst all the bleak truth of that thread. There is also the daratumumab phase 2 study just beginning in Norway which looks quite promising. There are several threads...