[responds to a post that was deleted by the poster]
there are also lots of immune related medications in trial by private individuals and groups that might answer this question before research tbh
please take this with the usual grain of salt of "self reporting, online data, could be placebo"...
also just can someone test a drug that is not pulled out of their arses and is so dangerous, im so worried about future trials that could significantly hurt people
and this is from someone who is prepping to try cyclo after like 8 billion tests
apparently "Avi Nath at NIH tells me UCSF is trying to launch a clinical trial of a class of drugs called checkpoint inhibitors in ME/CFS. The paper he published yesterday mentions these drugs as a target for testing in the disorder, on the theory that they can help clear persistent antigens...
as someone with long covid who is newish to fucking understanding the shit storm (and life saver) that is the immune system
I am so sorry that Me patients have to put up with this collosal bullshit. Its why i refuse an ME diagnosis and only accept long covid.
We know patients who are literally...
this statement does not follow "No matter how much the body tries to fight whatever bug is in its system, it can’t win.", it could also be some form of internal autoimmune or autoimmune like issue. We simply dont know from this
you have mentioned t cell populations in LC and ME patients before, is there anything meaningful in this data other than "immune cells are activated in this population indicating something is happening maybe" - which we have heard a million times but no one seems to be able to work out the god...
"During testing, all but one PI-ME/CFS participant reached the peak respiratory exchange ratio (RER) of ≥1.1 and there was no difference between the groups"
is this not quite extreme cardio for a ME patient? genuine question i dont know
I honestly thought i was going mad. To keep it simple, as i read the data it seemed to be they were saying stuff like "population totals of certain cells like NK cells and T cells are no different" and that there are "indications of chronic activation" sort of type stuff, including the dodgy...
Can anyone break down what the T cell findings are here, and how they came up with this claim "immune checkpoint inhibitors may be theraputic by promoting clearance of forgein antigen" - did they find foregin antigen or active t cells? or both, this makes little sense to me ngl
yes ive been made aware of this, its again a reasoning for the short/intense approach
if this doesnt work i have a choice of medium level steroids for a long time Vs something else, i will have a long think because whilst steroids are amazing, i dont want to mess with it long term
luckily my actual doctors disagree, and thats why ive been able to find things that help.
I am uncertain about this long term, its likely I will end up doing chemo either at home or in India anyway, at this point its damage limitation
?
i. https://www.cell.com/cell-reports-medicine/pdf/S2666-3791(22)00195-1.pdf
ii. https://www.nature.com/articles/s41467-023-40012-7
iii. https://www.science.org/doi/full/10.1126/science.adg7942
iv. https://www.sciencedirect.com/science/article/pii/S088915912300363X
v...
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