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Iirc Chris also said they would meet once a week? It sounds like exactly what ME research in this country needs. Some unity and direction. I'm particularly excited by the possibility of new specialists in DecodeME gene areas getting involved.

Sounds like if it's CD38 inhibition rather than plasma cell depletion we want this drug might be more effective than daratumumab?

Interesting! If this is the case then the Scheibenbogen trial will be worth keeping an eye on if it goes ahead. I hope they measure NK cells before treatment too.

Besides SequenceME, is it possible/practical for someone to do a study focussing on all or some of these genes? My understanding is that you don't need anywhere near as many participants for statistical significance when you are looking at a specific gene rather than at the genome as a whole. It...

Isnt that the one thats in Polar Bear livers thats toxic to humans? Answered my own question - yes, in high quantities. https://en.wikipedia.org/wiki/Hypervitaminosis_A

Does the anti CD38 drug Scheibenbogen is using also require NK cells to work? Do you have any speculations about what sort of approach the other subgroup might need in this scenario?

I assume this stuff will be investigated after dara p2 if it succeeds but that is a way off. Personally I wish they could have gone straight to a larger phase 3 with mostly high nk cell patients but subgroups of artificially raised and low NK cell patients. If there trial is postive and it was...

Every time someone does this it plays into BPS hands! Can't researchers understand that by constantly announcing they have found a biomarker based on premature and in this case poorly conducted findings it delegitamises them AND us in the eyes of the medical establishment.

If they truly believe the drug helped them, and the drug company are refusing to release the data, what else can they do but call for another trial?

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?