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So apparantly (repeating myself from another thread here) according to Michelle James' Stanford talk, someone (it wasn't clear which group) is looking at OX40, a CD4 and CD8 T Cell marker, in a PET study. If that can show the bone marrow, perhaps that might give us some clues?

Thank you!

In Michelle James' talk she mentioned - in the list of tracers that various groups have been looking at in ME/CFS - that there is a CD4/CD8 T cell marker called OX40. I don't know if it's her lab or someone else looking at OX40 but I would be very interested to see what the results of that are.

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.