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I hadn't thought about the fact it might not necessarily be involved because its high- good point. Ah that sounds like it could be complicated. I drafted an email to Michelle James yesterday but looking now she doesn't seem to have a contact email listed on her Stanford page. I was also...

@MelbME you are running PET studies on ME/CFS patients currently right? Have you considered/would you consider doing a further study using this tracer in order to follow up on your CD38 finding in your study with Jo Cambridge?

Perhaps someone should contact Michelle James about this then. If she isn't interested in studying cd38 herself she may be able to advise how best to go about it.

A lot of ableists are obsessed with the idea you shouldn't let your disablity define you, and would probably say yes.

Just found out that there are cd38 PET tracers - would these be useful for exploring this hypothesis?

Would these tracers be useful for exploring the hypothesis that CD38 is integral to the pathology of ME/CFS?

Yes I think I know the exact type of pain you mean. It does often seem to come from inside the bone, if that is possible.

Yes that really shows a lack of initiative/interest on their part.

So if we were convinced the pathology was partly in the bone marrow in ME/CFS, what would the next steps be?

Will the DecodeME X chromosome analysis show us if this is the case?

That the pathology is in the bone marrow. Perhaps I'm misremembering.

Hasn't Prusty been thinking along these lines? Also of course Fluge and Mella must be because bone marrow is where LLPCs live.

I just feel quite worried because this may be a big opportunity to change things. If they are actually successful with this legal challenge and ask for 'specialist care' without being more specific then BACME will just fuck us all over again, and now none of us can complain because 'it's what we...

So much money and patient time and hope was put into this study. The NIH fobbed off patients for years because this study was going to move the field forward and provide answers. And it was such underhanded, patronising bullshit. A deliberate exercise in foot dragging, and then they scold us...

I haven't donated for this precise reason. It isn't that hard to say 'physician led services with specialist nurses and home visits' is it?

This is the thing! I have friends who are almost certainly autistic and struggling because of it who literally cannot get an assessment because there is basically no NHS provision. And being diagnosed later in life for me (late 20s) meant that by the time I was diagnosed I had already developed...

Presumably they will have to look for finding see if they are there replicable though. So I guess I'd like more transparency on what findings they are trying to replicate. It would be a shame for them not to look for a really important/interesting finding.

This woman is incredibly dangerous. I don't think its a coincidence that her and Wessely are being elevated as the naysayers of 'overdiagnosis' now. It's quite frightening as an autistic person that we seem to be in the crosshairs both from the far right (RFK, Farage) and centre (Wessely, S...

Are there any important findings we think they should try to replicate in this study? To me this seems like a very expensive fishing expedition but perhaps there is something positive that will come from it.

Yes I think Nath has essentially been played by Wallitt and the interroception crew into legitimising their bullshit. This seems to be a disturbingly common thing in research and academia. Take over a rival discipline and remodel it in your image like an academic cuckoo . Happened to my...