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Yeah I just think that nobody should ever use it. I refuse to fill them in out of principle.

So are they going to go ahead with needing immunoabsorption response as a requirement in their cd19 trial even with no evidence of efficiency in an RCT? Those case studies looked interesting but I won't get exited yet.

Is there any other illness where one of the 'gold standard' diagnostic tools was designed by a denier of that illness?

It's disappointing not to hear more about the dara pilot expansion or retreatment but that antibody plot Fluge shared looked really interesting.

Immunoabsorption phase 2 RCT showed no significant difference between groups. Disappointing but not shocking, perhaps. Although the two researchers presenting it kept talking about how happy they were to share the data which made me think it might go the other way! Does immunoabsoption do much...

I swear Fluge said he was going to talk about the pilot expansions at the start and then he didnt! Very interesting talk nonetheless.

I'm not sure I've ever had mine measured - is it something GPs can order?

Thanks for doing that! Its an interesting connection to your study, perhaps it will lead somewhere!

This post about Seiferts talk mentions a finding of CD24 in extracellular vessicles. Could this connect to Mensa/Armstrong/Cambridge's finding of increased cd24 (and cd38) IIrc @Jonathan Edwards said Jo C thinks CD24 is important in MECFS.

Yes please do let them know.

Yes please, would appreciate it!

Again it bears repeating: I asked to be referred for MECFS assesment when mild. My GP refused and instead gaslit me that my symptoms since the tonsillectomy I had had for chronic tonsillitis were psychosomatic, which led to me worsening my condition drastically and needing near constant care...

Oh and to cap it all off I wrote an email asking to see Nacul a month and a half ago but it bounced back citing that the email address provided on my letter doesn't exist!

This is what I need and I don't understand why it's being treated like a hidden menu item at McDonald's! I have severe ME. He is an ME specialist attached to my local MECFS service. Why haven't I been offered an appointment with him?

Update, today I got a letter saying I'm being discharged. F-king fuming, to be honest. Need to wait til I've calmed down to call them up about it!

I didnt notice that on the slide. I think that's a bit of a sweeping statement, especially considering OLMF4 also has possible links to interferons. But yes, I wonder why he's disregarded the BTN immune link in that manner.

Did Michelle James say when they plan to publish?

Disappointing about HLA! Did he mention the X chromosome analysis at all?

In all seriousness though, It might be worth thinking about who could do this sort of trial in the UK. Perhaps people who are not currently in the field, but who could be coaxed in with the genetics or further evidence if it emerges. Can we think of anyone currently doing ME or LC research who...

All I've been offered so far is a uselesss group fatigue course. When I said no they put me on 6 monthly review. Very disappointed. i plan to ask for an appointment with Nacul. We'll see what they say when I get around to it.