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Fwiw a reddit comment about the study questionnaires from a participant. I'm not saying this drug definitely worked but I think there are a lot of elements of this trial fiasco that fit with what we have talked about in terms of problematic trial design. I think the NIH would do better to...

https://thesicktimes.org/2025/10/10/vyvgart-brought-us-back-to-life-but-the-long-covid-trial-was-canceled-we-are-calling-on-the-nih-and-hhs-to-study-the-drug/ Article about these trial participants.

https://thesicktimes.org/2025/10/10/vyvgart-brought-us-back-to-life-but-the-long-covid-trial-was-canceled-we-are-calling-on-the-nih-and-hhs-to-study-the-drug/ Don't know if this is the right place but if all of these people who say they improved and are asking for another trial definitely got...

Did he present any interesting data or was it just about the study structure etc? These studies have taken their time, thats for sure.

Is it possible people with depression are more prone to ME? Or that a percentage of depression cases are actually people with the prodromal form of ME, whether or not it ever turns into the real thing?

Does anyone know what happened to Altmann's WILCO study? It would be great if he could join us on here some time.

I mean apart from the fact that if it was real it would be life changing for every single one of us. I understand your skepticism and I share it, but I think you go a little far here.

How long would a good quality independent replication take and what would it look like?

I'm almost nine years since onset, five years since I became severe and almost 16 years since I developed what I think was a prodromal form. I got a lot worse because I couldn’t accept that I had MECFS, and doctors used that to trick me. It's sick the way people prey on hope. I agree on the...

Well, that was a beautiful 2 seconds between reading the title and opening the thread and reading Chris' reservations :emoji_joy:

Thanks. That's really concerning. I don't understand these obstinate responses from people in the MEA. Do they really think they're doing enough?

Frankly, they can more than afford to cough up the ~500k still needed for Daratumumab and I can see no good reason why they don't. Ditto bridge funding for Edinburgh right now. Have they ever supported Ponting's team? And yes if SequenceME or any other viable DecodeME follow up work needs...

I get your point in general terms but I don't believe that Jeremy Hunt could be an effective advocate for SequenceME, or anything else that we need, if he still thinks that GET and CBT are appropriate treatments that help pwME and the sun shines out of Simon Wessely's arse.

Could this potentially have something to do with the fact that CD38 was associated with deterioration in this long covid study?

Its interesting to see this after the DecodeME HLA-DQ link. I think JE said yesterday that F&M and maybe Wessely (bleurgh) also found a DQ link before that.

Thought I'd mention something that occurred to me that made me hopeful. If the daratumumab effect is real, it's heartening that the pilot participant in the social media video who went back to work from mod/severe said it was exercise that put her in a wheelchair in the first place when she...

I saw this earlier and it is interesting but I'm not sure if we should be sharing reports of improvement from patients in ongoing blinded trials.

Is this possibly relevant to the BTN2A2 hit in DecodeME? High CD38 was associated with worsening- would that fit with what we were discussing in the dara threads? I believe @DMissa said CD38 was down in his cell lines - does that put a damper on our speculations? @JonathanEdwards what do you...

I felt furious when I heard this news on Thursday. Wessely may be a product of a corrupt and uncaring system but his constant elevation is proof that the grave injustices we have been done are not taken seriously. SW: these sick people people have mental health issues and therefore shouldn't...

Yes if A4ME have not vetted whether Hunt still holds these views they are risking inviting a fox into the henhouse. Look at what BACME entryism has done to the MEA