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Yeah to be clear, I was talking about influencing politicians through a protest campaign, so they put pressure on the MRC. I don't know how we appeal to the Labour right, they seem very in thrall to the BPS ideology and closely aligned with Wessely. I think getting Green politicians onside...

Okay we can all hope for that, but if dara doesnt work, and jak stat inhibitors don't, we need more research funding to find those treatments. We need the funding because we need treatments.

So instead of the MRC having a change of heart, it appears they are being as obstinate as ever. We are stuck in the same catch-22 of needing the political will to change things and get funding but there seemingly being no way to have political will without compelling findings. So hopefully...

I have to say I am deeply disappointed in the MRC continuing to stifle progress. Not the birthday present I was hoping for! But I'm glad to hear things are ticking along nonetheless. Which study are you referring to here?

Perhaps if this happens some of the modules then some of the modules without funding could be funded through charity fundraising? Perhaps they are planning to do at least some of the analysis with the ME/CFS samples with whatever funding they've secured now and then do the long covid part and...

Oh right, thats disappointing about budgets. Are the MRC not funding any of it or do we think they have given anything towards it? Did Sonya give any indication as to whether they thought it likely they would secure enough funding to proceed?

Does anyone have a summary of the talks today? Particularly interested in what Danny Altmann had to say about WILCO, and any updates from researchers generally on future research projects and collaborations.

So the MRC aren't funding it then? Absolute insanity. It's peanuts for them in terms of potential payoff.

Sounds like Habets' anecdata is worth less than nothing in that case. Can anyone link me to JE's comment about this? All patients were at least moderate though. The two (i think) severe patients didnt respond but nor did 3 moderate, and what they had in common was low NK cells. I don't think...

Is he using the same dosing schedule as the trials? Has he at least checked NK numbers before dosing patients? I don't approve of his methods but if what he's saying is true that is a bit worrying. Isn't he using sub clinical doses of teclistamab when he prescribes that anyway?

Agreed on the trademark front. It seems like they released data from ten participants earlier this year. They're claiming differences in t cells but also marked differences IFN-G, IL2, IL-10 and granzyme B Wasnt there another flurospot or elispot study that showed elevated ifn-g in long...

Surely if we want to find out whether certain kinds of t cells and cytokines are involved in Me/CFS a test like this would be a useful tool to help figure that out?

Et in arcadia ego.

So when will we likely see the results of this study? Primary completion is all patients dosed and followed up and everything right? And study completion means like paper written and sent out for publication etc? Or does primary mean paper drafted too? I seem to recall a lot of studies have an...

If what Younger presents in this video holds up then this is absolutely huge. But I guess we have to wait for the paper to make any real judgement. He says he's working on a brain lactate one first so might be a while. I've been quite skeptical about some of his recent statements, but I'm...

I've mentioned this quite a few times on here but one of the first things to go wrong with my health was developing some sort of non 24 hour sleep disorder when I was 19. I strongly suspect now this was a prodromal phase of ME/CFS.

The recent Lipkin paper found higher GDF15 post exercise in pwME.

I had somehow missed that there wasn't a control group in this study. We see so many studies without controls. Is recruiting them really so hard/expensive?

This gives some creedence to the idea discussed in the thread for the 2019 paper that GDF15 might only be higher in mild and moderate pwME during PEM/post exertion.

I also feel like this study could be on to something, and think it could gel with a lot of what we've been talking about this year. I would like to see a bigger study, especially one in ME/CFS. I'd very much be interested to hear what @Jonathan Edwards thinks about it. Both about the study...