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The question is how to we do this? I have limited resources as a severe person, but I want to do everything I can to ensure this happens. I am a writer, and will happy write or copy edit anything (of a reasonable length) that would help towards this end, be it social media posts or something...

This is great! But I really want to see the results of WILCO. And it goes to show that charities could fund at least part of SequenceME if it came down to it. I don't understand why that hasn't happened already. And as was pointed out on bluesky, it's absolutely insane that six years after the...

@Jonathan Edwards do you have any thoughts on how these five patients responded and what it might mean if it's not a placebo response? And did you ever hear back from Fluge when you emailed him about the possibility of anti CD38 being effective by another mechnism than LLPC depletion? It would...

I read that summary of their hypothesis last night and fwiw I have to say that subjectively their idea about it messing with blood flow definitely feels right in terms of how my symptoms feel and affect me.

Iirc F&M just say antibodies in general. E.g. here https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fund/

The idiocy and cynicism of the corporation/government driven movement to gaslight the public into thinking 'covid is like totally fine now what are you even worried about' never ceases to disgust me. None of my non ME/LC friends take any precautions anymore. I worry about them - they have been...

I wouldnt compare it to a regular hangover, but back in the day I regularly drank myself to the point of experiencing alcohol poisoning or alcohol withdrawals. And that really was similar to that total poisoned feeling form of PEM. Although as I've said I think I may have had a prodromal form...

I found the above for IL1R2 And this for IL1RL1 I wonder if anyone more knowledgable thinks their association with PEM here (and IL1R2 being associated with fatigue in the first study I linked) could make some sort of mechanistic sense?

This looks really interesting. A fair few cells/molecules come up here that have been discussed before. Have we seen these come up before? Interesting that this came from the STOP-PASC cohort.

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...