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This sounds a lot like my prodrome phase, although I never did much formal exercise in that time. But I always felt fried after socialising (nights out took ages to recover from but even just hanging out with mates) or a full day of lectures and seminars etc. One of the things I remember from...

If CD38- nk cells does prove to be the reason for response/non response then F&M are probably well placed to evaluage whether these infusions could be viable in MECFS patients, given their expertise in oncology.

Sorry to hear you had no response. That is quite interesting about your drastic NK cell drop maybe being to do with not having cd38- NK cells. But perhaps people with naturally higher overall NK cells do have higher cd38- nk cells. I'm not sure we can conclude responses are likely to be low in...

Hi Chris, thanks for commenting here - I was wondering if you could expand a little on what you said in the talk about BTN2A1 likely being the gene as opposed to BTN2A2, and what function you think it might have in the mechanism of MECFS?

I'm still not clear why you predict such a low response rate in the p2 trial. Surely we would expect to see at least a similar distribution of responses as the pilot if NK cells are part of it, even if not everyone with higher NK cells has enough CD38- NK cells to respond.

Do they do this in human subjects?

That's an interesting prediction. 30 or 40% response rate would be quite low, lower even than the distribution of responders and non responders in the pilot where NK cells weren't an entry requirement...

Can you say what the degree of these partial responses are in terms of step count, functioning etc? Do you have any links about these CD38- NK Cells? I would like to learn more. Anyway this is quite interesting. Can I ask how you contacted/discovered these people?

Are you saying only one or two people have done 4+ doses? I think the full dosing schedule is 5 for p2 isnt it?

So if your information is accurate, we have 6 weeks uniform start of response in p1, but in the LC patients with less doses and the retreated patient response at week 2, and then 12-16 weeks in these people trying it that you've been in contact with... That's a lot less neat that the uniform 6...

I came across this post in the thread for Nath's checkpoint inhibitor trial

Due to the mention of nucleus acumbens on another thread, I googled it and BTN2A1 together on a whim and got this. Not sure if it means anything. https://www.proteinatlas.org/ENSG00000112763-BTN2A1/brain/nucleus+accumbens

Agreed, it will be beyond disappointing if the rehab people manage to coopt this project. Everything they are involved with they attempt to bend to their own ends.

In this recent talk, Chris Ponting says he now thinks the gene at this locus is BTN2A1 not 2A2. https://www.genecards.org/cgi-bin/carddisp.pl?gene=BTN2A1 He talks about the fact that according to an analysis someone did, it's the gene that's disrupted most by rare variants; and about its...

Has anyone watched this talk? Its very interesting. I wonder if anyone has any thoughts on the HPA axis based hypothesis Chris puts forward here? Also very interesting that he now thinks the SNP on chrom 6 is pointing to BTN2A1 not BTN2A2. Seems to hypothesise a similar gamma delta T cell...

This is what has been concerning me in the last few weeks. Some of these patients will have had a small dose like Habets was giving but i assume not all... I would really like this drug to work for at least some of us but I do find the lack of positive off label stories concerning. You would...

Oh I know, I was joking because there's a lot of talk on here about immune signalling that might be happening in tissue and isnt detectable in blood! I don't think it's the same at all I was just being silly.

Oh no is this us with immune signalling? :emoji_sweat_smile:

Are there any studies we want to see that we could get German advocates to lobby for? Any replications or any areas we think would be important to look at? Any basic lab work following on from DecodeME?

This was a really good and necessary article. I really hope it sunk in with some of the people who are pushing inflammation and viral persistance etc. I did think there were a few notable omissions unless I missed them: The finding of higher cd38 and cd24 in MECFS B cells. Jackie Cliff's T...