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For one of the other possible treatments mentioned (anti CD52, Alemtuzumab) there was this overview of use in MS https://msddjournal.biomedcentral.com/articles/10.1186/s40893-017-0024-4

I’m aware of work on nasal vaccines, there was some hope they’d help reduce transmission. And I’d hope those of us unable to use current covid vaccines may be able to use them, but it’s all speculation. I don’t know if we understand enough about the long term immunity issues or the negative...

(Edit, I probably posted these two in the wrong order, oh well, a disadvantage of drafting thoughts in notes over time, but the suspect analogy came first) I think it was Jonathan who asked why these cells would have receptors for interferon gamma? I wondered if it was perhaps it’s a form of...

Someone else mentioned FcγRI can be expressed on neuronal and endothelial cells. Given discussion about problems there, this seems potentially interesting. How could it tie in. More speculation…. If FcγRI is expressed, even in low numbers, on neurons (particularly dorsal root ganglia) this...

That’s what I was wondering, cause or effect. Useful to know it could be either. I guess the only way we’ll know for sure is from genetic studies?

So there could be an MCTS1 variation that rather than impairing functionality here enhances it? Another one of the various contributory factors?

And here’s links to the genecards (edit: put in a spoiler tag to not clog up the discussion)

I’ve missed if this had has come up in discussion, it’s not referenced in the paper but I came across it in some searches ME/CFS patients exhibit altered T cell metabolism and cytokine associations (2019) Mandarano, Hanson et al It’s perhaps less the cell metabolism part as cytokine...

Is it worth tagging this thread with IFN-γ or interferon gamma to help in any searches given we’re now all very interested in it? Although there’s a trend, that mild were lower than controls is perhaps interesting? I’m adding the figure from the paper

And this is another reason I don’t think we should consider how some may interpret words or phrases used too much. Those people who are set in their ways didn’t trust us as reliable witnesses to our own experiences then and likely won't now. It’s a waste of time trying. Focus on those who wll...

This Friday we have the webinar with updates from Audrey Ryback and the PrecisionLife team, AfMe appear to be accepting questions in advance, I wondered if anyone had sent any in or maybe we could come up with some together?

At the other end of the scale I did have an amusing (well, for me) thought. What if we do find a complete cure? Many/most of us would then actually need and benefit from the sort of rehab that we’ve been offered for years to get our bodies working again! And probably to work with some of the...

On reversal of any neural plasticity changes once the feedback loop is stopped. I feel confident this could be possible, just a feeling from my experiences within my illness. But also, to be honest, even if something described here just got me into a steady state of the best I’ve been since...

Fair enough. You know best what your aims are and the ways of working within that world and community. Glad you can discuss things more philosophically here. I’m obviously positive about the paper because of the relevance to me and my life, but I’ve also just found it really interesting. And I...

I wonder if there is a way of emphasising this in the paper? I’m not sure how clear this subtlety will be to people who haven’t had the benefit of talking to you about these ideas for weeks/months as we have. Lay and perhaps scientific readers may (and I think I have already seen this) get hung...

I understand people’s concerns with some terms due to misuse by and connotations with things people who have misused them have said or done. At the same time I can’t think of this as being anything other than a biological hypersensitivity or perhaps overreaction, or indeed a hyper-vigilance...

Thanks to everyone involved and good luck with the update. May the SQL gods be kind to you and hope you encounter no PHP gremlins on your travels.

In case anyone newer to the thread missed this, audio versions of the paper are available to listen to here, now with a few fixes and a higher quality ‘Studio’ version https://u.pcloud.link/publink/show?code=kZLPeS5ZBEzVhhjXk8hM18y29vgEGVG6zSvk Any questions, comments or feedback please use...

For a while I’ve been wondering about running a different poll, but I’m not sure how to word it. Because I could accept any of these explanations - there was a clear triggering event which started it all with no gap - there was clear triggering event but a gap before I got full ME/CFS - there...

Is it over responding? That would imply lots of something being produced, but it sounds like the point is, there isn’t. It is more an over-reactivity or sensitivity or hypersensitivity to particular things isn’t it? Overt readiness? Primed immune response? “Immunological and potentially...