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Quite a few things on there track with my experiences, especially the emotional fluctuations I have experienced since becoming severe. Edit: I hope this isn't confirmed to be causing it, because it's an extremely unpleasant symptom.

There was an IL-6 finding and drug study in Long Covid was there not? The drug was called something like Tocilzumab...

I am not a doctor or scientist, but if ME/CFS is caused by some sort of immune system signalling loop, couldn't taking something like this potentially make it worse? Iirc the rationale for this drug is viral persistance based.

I've decided not to do it until phase 2 is out or shortly before, for the sake of my sanity. As Utsikt says, we dont know if they are relevant or why yet either. And if F&M don't test anymore low NK people in a case study before phase 2, we might not know for a while.

Thanks! Nervous to hear how that goes as a severe person. Will they all have NK cells above the threshold from the pilot?

Me too! I note this guy also worked at Kings College, like Wessely...

This is excellent news, but I dont think I can watch another RECOVER level opportunity squandering. I have four burning questions: Can they fund projects outside Germany (e.g. SequenceME)? How do we get Chris and Sonya (or JE) in touch with the funding people to persuade them to follow the...

It would have been nice if one injection was enough to induce significant improvement/remission. So in that sense we could see this as a bit of a shame. But beyond that it seems to my laymans eye like about what you'd expect if you gave a lower dose than necessary of something that did work. So...

If they did this we would be in business! I wonder how complicated/possible it would be to prove or disprove. @MelbME are there any patient studies in the works that could shed some light on whether the itaconate shunt is behind ME/CFS?

That's frustrating. I would really like more clarity about HLA, hopefully decodes separate analysis will provide it.

Good to see this out! I don't see a data set or table of genes they found, aside from the replicated DecodeME genes. BTN2A2 was found here too, and CA10, OLFM4, SUDS3, DCC, TRIM38 and quite a few others. That's good news! Can we say replicated when its the same cohort/dataset but different...

If we are waiting for this biobabble to stop before we can recruit doctors then we will be waiting til judgement day. It will only stop when we know the cause of ME/CFS and/or find an effective treatment. Perhaps we can (and should) persaude charities not to spread unevidenced stuff, but the...

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.