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But it would give us a vital clue and show you could make people feel much better than any GET or CBT approach can from an immune treatment. Which would help our cause a lot. To say nothing of the fact you would have a treatment (unless there were problems giving it long term), which would be huge.

I think the original proposal was that it might break the signalling loop and make the patients feel better.

But when MECFS patients do get severe viral infections, yes some report feeling like they dont have MECFS while sick but many also get worse for a while or permanently.

I suppose my questions stem from the fact that if we think there is a reason to do an experiment like this, either MECFS Sciences idea or JEs, and it is relatively safe, it could tell us one way or the other whether certain cytokines are involved in a signalling loop in MECFS, and potentially...

Would this be dangerous e.g. by leaving people immunosuppressed?

Do we have good evidence that is also the case during PEM? And I thought the signalling could be happening outside of blood anyway. Surely this carries a pretty good risk of amplifying the feedback loop, making people sicker and perhaps even more severe long term. I see what you mean though...

Oh right, my bad!

I think this is a really interesting connection to the PVN because the PVN apparantly mediates osmoregulation and so many pwME have issues with dehydration, excessive thirst, exessive and frequent urination (and sometimes in PEM the opposite - I need to drink loads but barely pee at all) etc. It...

Is there anything that the ongoing analysis can do to clear this up somewhat or will we have to wait for SequenceME?

I agree with this. But something I don't understand is why we are seemingly more hesitant about the immune system genes - e.g. OLFM4 or BTN2A2 likely being the genuine article, when we broadly suspect a brain immune signalling loop and these genes implicate things like interferons and T cells -...

Yep, the endless merry go round of blame!

I think this perspective makes me particularly angry because I was doing precicely that when I deteriorated from mild. Trying to come to terms with and heal from trauma, build a life that was more suited to me away from academia etc etc. And yet my voice is completely ignored by these people...

The delusional beliefs here have been legitimised and amplified by every health institution imaginable. Just because the BPS narrative stems from the 'it's all in your head' bollocks that people have believed since time immemorial is no excuse. It is as if instead of combating climate change...

From a thread about an individual with VS MECFS being mistreated in hospital: I don't know how anyone can read that and say that the hospital is doing their best. Absolutely horrifying. None of this is necessary. It is all caused by delusional folk beliefs held by DOCTORS for Gods sake...

Considering most of us on this forum are here because of deeply held beliefs in medical culture, which is a big part of what anthropology is supposed to study, it could have quite a lot of merit if people like EM hadn't drunk the BPS kool aid.

The fact that Mendenhall promotes a broadly BPS perspective and does not advocate for biomedical research makes it all the more shocking how hard SW came down on her for criticising PACE.

I have been lucky enough to have care from loved ones the whole time i have been severe. I have eaten quite well (apart from when i was on a low histamine diet but that was mostly fresh healthy foods) for the five years I have been severe. My cognitive issues have been atrocious the whole time.

I've heard of it happening to doctors who believed BPS narratives about MECFS, but not to any prominent BPS psychologists or psychiatrists.

Perhaps if one of the BPS lot got MECFS and confidently attempted to cure themselves a la Garner but ended up bedbound, it would have a similar impact as this Norwegian chaps misadventure with sonic weaponry. But I suspect that like all doctors with MECFS their authority would instantly...

More fantasies about pwME being able to do whatever they want with the right adjustments. We will never get anywhere on the care side of things until people truly understand how disabling ME/CFS really is. It is the crux of the issue.