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Interesting to know is dr. Habets from Germany is also currently doing his mini Long Covid trial n=6 (a bit of a maverick doc, but at least he’s trying) n=6

Just want to add my comments to these slides as I am impressed (and hopeful) 1. slide RCT 2025? - results Pilot study in Norway n= 10 after 1 year : promising and well tolerated - A larger placebo controlled RCT trial is going to be planned (in 2025?) *** 2. With regards to the second...

hi @unicorn7 How are you now? Wanted to ask you some questions but I don’t know if you’re still active here

1) I think it’s more subtle. There is continuous PEM but within that you have different Grades of (worse and less) PEM – and than you can get big PEM crashes within the PEM If am go off my own experience and other severe ME I know 2) I agree. As far as I know, there is not real good research...

What do you think of this research on T-Cell exhaustion ? https://www.umassmed.edu/news/news-archives/2021/11/liisa-selin-and-anna-gil-study-links-between-viral-infections-and-mecfs/ "The researchers are investigating the presence and role of T cell exhaustion and double positive CD4+/CD8+ T...

Just adding the 2nd part from Healy Rising Cort Johnson’s blog on Rinvoq. https://www.healthrising.org/blog/2024/11/22/jen-jak-inhibitors-chronic-fatigue-syndrome-long-covid/?unapproved=1107042&moderation-hash=1b38624653db6d460451b2fa1dc008a8#comment-1107042 There is an interesting remark from...

Possibly, yes. I do not know enough about these Cytokine panels, but these fringe physicians dó try to research blood panels more in depth vs 99% of doctors. I appreciate their effort to dive deeper in ME CFS, although sometimes at financial cost of the patient Note: T-cell exhaustion is some...

Here is the personal story of the lady that is in remission from Rinvoq. - Came out on Health Rising today Very interesting what she mentions about ‘cytokine-storm.’ - what strikes me as odd is that normally a cytokine storm comes with fever, high heart rate, etc. is it Possibly linked to...

My blood tests came back : all markers went through the roof. Had to rush to the hospital.

I have exactly the same experience in the Netherlands. GP’s / doctors Have this standard question in their repertoire when you Come for a consult and you describe a period of viral (or bacterial) infection: Do / did you have a temperature ? This seems to be like a ‘triage’ (decision tree) to...

Not having a proper fever is definitely a thing for ME CFS - from my own experience. - and from discussion/comments from prof Meirleir important is to make the distinction between 1. High fever (= pyrexia) = sustained high temperature +38°, sweating, chills, cold/hot, aching muscles/body 2. Low...

This is exactly the problem. I’m not aware of more than 5 (max 10) ME CFS official drug trials (with controlled data) going on at the moment, and most are very cautious - trialing drugs that are low risk (e.g. LDA, LDN, etc). And, we actually are talking here about an illness that is NOT a...

So as I m cognitively impaired ‍️‍️, question : with **very indirect epiphenomenal relation to the immune system** You basically mean the casualty is unknown/unclear? Or are you implying more than that? Like, for example, a subgroup also Developed some kind of auto immunity as comorbidity...

@ukxmrv Can I ask you a question about this? What protocol did you have for your cancer treatment ? Can also DM if you want.

question @Peter Did you participate at CycloME trial ?

study excess iron Mice “Excess iron comes from the body’s inability to process iron from the diet and is linked to inflammatory conditions, as well as cancer and aging,” said Chang. To examine iron’s effects, the team used mice bred to lack the gene FLVCR1 in their T cells, resulting in an...

Way out of my depth here, but Just wanted to pinpoint to this extract from the recent Biopsy study from Rob Wust on Muscle Tissue Biopsy before vs Biopsy I’m PEM 1-day after - in Long Covid patients (ME type) versus healthy controls. Abundant T-cells in Muscle Tissue at baseline (and directly...

I think your hitting the “sweet spot”. ME-patients are in the desert of drug trials, treatments and specialist centers. Unfortunately, there is no pre-established diagnosed ME-population attending specialist centres. There are no specialist centers. There is no money and medical/scientific...

We should get a rating system on every published study: Rating from 1-5, e.g.: - Patient Population & use of ME CFS diagnostic guidelines - Retro perspective case study vs Open Label - Involvement of Doctor/Researcher himself in Study, etc - Etcetera So you can quickly judge the value of new...

Yes, strange, I would not know either, and I am sick for more than a decade. ME CVS Vereniging would surely know. This is their Funding page. https://me-cvsvereniging.nl/mecvs-vereniging/giftendonaties/ I’m sure one of these people can answer you for specific ME CFS funds - if there are any...