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The current state and future of T-cell exhaustion research https://pmc.ncbi.nlm.nih.gov/articles/PMC10352049/ There have been different definitions of exhaustion based on varying combinations of metabolic, epigenetic, transcriptomic, and activation based phenotypic markers in this research...

T cell exhaustion isn’t an idea it’s a measurable phenomenon.

Is there a reasonable less toxic alternative to cyclo with same moa? Could also be a combination of other drugs that effectively do the same thing?

While the “multidisciplinary and multi-organ system” approach is good for doctors treating patient symptoms and comorbidities, to me from a research perspective it’s scientists effectively throwing in the towel and saying we’ll never find the root drivers and causes, because the root causes...

I’ve been out of the research loop for a long while but off top of my head I don’t recognize most of the invitees, only a few established ME/CFS researchers. Also seems like everyone funded or associated with OMF is absent from this meeting

Who knows this could just be an ME fluctuation, but here’s my anecdote Compared to LDA it’s harder for me to definitively attribute it to Zep because it’s 7 months of being on it and only the last two months on 10 mg and 12.5 mg have I noticed a slight improvement and stabilizing effect on my...

Some events basically strongly suggest it cannot be a placebo effect. First, if your ME never fluctuated to such an improvement ever before on its own and so suddenly (and coincidentally after taking LDA), or the fact that it can take 2 weeks for LDA to work and we didn’t know that beforehand...

It’s goes without saying that I’m all for Dr Tam giving patients the option to try Abilify, they will be helping a number of people because I’m sure already in their practice there were some pwME who were at least temporary responders, and that is a good thing to me. Abilify makes my PEM go away...

Exactly, just like for these “miracle” diabetes and obesity GLP-1/GIP drugs, even for these 10-15% of patients in phase 3 clinical trials were non-responders.

In my case I can wholeheartedly tell you this is not a fluctuation, my illness doesn’t fluctuate to this extent where mostly goes away all on its own or because of placebo effect. Every single drug I’ve ever tried never worked at all for me until this, so I don’t suffer from a trigger happy...

To clarify your definition of “good” evidence is human clinical trial evidence. There is quite a lot of anecdotal evidence that Abilify can help some pwME tremendously, which I know it’s not validating evidence but it’s evidence enough to test a hypothesis or for a well meaning doctor to...

@Jonathan Edwards How about ignoring for now the semantics or specific immunobabble language of Th1/Th2 balance and, I'll try my best here I'm not an immunologist, e.g. there might be some dysfunctional regulation of ITK-mediated signaling in ME/CFS which causes dysfunction in certain NK cells...

@Jonathan Edwards do you have any thoughts or useful insight into ITK as a target and possible ITK inhibition in ME/CFS? Like everything else to get treatments to patients would require an empirical trial without direct evidence supporting this hypothesis. In addition to the other functions...

Best of luck to you too. You should know in a couple weeks after starting whether it works or not

Hi everyone I have a significant update - with the new bottle of Abilify I still need to take 2 mg to have a good effect! So this comes as a bit of shock/surprise to me, which means the very old bottle was still potent enough and the way my body has responded to it this third cycle is different...

ITK inhibitors in inflammation and immune-mediated disorders, Sahu et al, 2009

What do people think about interleukin-2 inducible T-cell kinase (ITK) inhibition as a possible target for ME/CFS for an empirical drug response trial? If ME is a T-cell mediated inflammatory/immune disease with a Th2 skew this could be a promising target. Soquelitinib (formerly known as...

https://www.nature.com/articles/s41588-024-01682-1 Medical Xpress: Researchers develop statistical method for genetic mapping of autoimmune diseases Wondering if something like this could help Decode ME

And the NIH ugh always getting things wrong their recent study saying no evidence of brain injury?!?!? Not listening to patients

This time around I am not going to take it for months, because while I have no idea if it’s covering up symptoms or actually providing symptom relief, I don’t want to possibly cause any damage. I’m only going to take it for a month and have a little vacation now that I can move and drive and be...