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What would that look like in this context? And what in particular would be replaced by drugs? The neurons or something they produce? (I assume the latter as the former sounds highly experimental/impossible).

I have now edited my posts upthread so as not to distress anyone else but yes I agree. I saw neuron loss and thought alzheimers parkinsons permanent damage etc etc and got in a bit of a mental spiral. Thankfully the sensible observations made on this thread have calmed me down significantly !

Do you mean in people who use it off label for ME if ResetME is successful? I think that would be really important.

I think you're right. And Scheibenbogens CD38 study (ixa something) should provide parallel evidence if that goes ahead.

I believe I was talking about the German government's new initiative- I am confused about whether MECFS Research Foundation are involved with that actually. But yes, they could be a candidate. I thought their recent call for drug trials applications looked fairly reasonable e.g. anti CD38, T...

This is something I really dont understand. Surely all that zebrafish modelling drug discovery stuff will be 1000x more useful if SequenceME gives us a glimpse of the mechnism behind ME/CFS. I really hope that they and the ME Association step up and do the right thing if called upon.

Something ive been thinking about - this is listed as a phase 2/3 trial. Do you think F&M might concievably enroll more patients than the planned 66 if they secure enough funding? And if yes, is this something that would be desirable?

This was an interesting and fairly hopeful interview. When asked what he'd do with double the funding, Chris spoke instead about what he'd do with the 20million for SequenceME instead, or rather, the benefits it could bring. It made me more angry than ever with the MRC, and made me think about...

Calling some kind of BPS rehab program 'hope' is so sick. The false hope the psychobehavioural approach sells put me in this bed, and did the same to countless others. Just had a look and this looks like patronising nonsense to me. With a side of stealth GET no doubt.

Does anyone know of any autopsy studies currently recruiting in the UK?

Yes the more severe I have become the worse my emotional dysregulation has become, but it was there from the start. Two months after I became severe I stupidly walked around a hospital. I thought it was about a fifty metre walk but it was hundreds. When I crashed I felt a fizzing sensation in...

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?