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In a sane world the DWP would be legally prohibited from funding this sort of thing, especially after what happened with PACE.

I have heard anecdotal accounts on the long covid sub reddit of precisely this. In the context of Wes Ely’s Baricitinib trial, people saying they take it for RA and it hasnt helped them. There may have been others who say it has helped them but I can't recall right now. It may well help a...

Hopefully the BLOC study will tell us whether or not BC007 has a significant effect in long covid. Results in October last I heard. I will never cease to be mad at Berlin Cures for postponing the LC Erlangen trial and cancelling the ME one (although there are whispers it will happen...

This is the other mechinism, aside from GPCR autoantibodies, by which it's theorised BC007 could work. The drug apparently affects/corrects RBC deformability. I believe Hohberger is running the UK Erlangen LC study on this and would have done the cancelled ME study. Still, we'll see in October...

When I first got mild ME, one of the curious things that happened was that I was going through all of my socks on the ball of my foot. At first I thought it was my new Doc Martins, but it eventually transpired that I was scuffing my feet on the floor as I walked around the house. Something had...

'Concern in this area highlights the fact that health professionals may not appreciate that giving advice on care, when reliable evidence for that advice does not exist, is a form of misrepresentation or deceit. In practice, recommendations based on psychological analysis have been most...

Of course it should. And PACE is a strong example of why. It has been thoroughly discredited, and exposed as fraudulent in court no less, but the Lancet refuses to retract it, the medical establishment refuses to acknowledge its myriad failings, and people are still being given GET based on its...

Agree, BPS language about this is designed to manipulate both patients and the public and its deliberate.

As someone who is a neurotic perfectionist, it totally fucked up my academic and creative careers because nothing I did was ever good enough. I was always dismissing what I had created or achieved and trying to do something better, so I never got anything done. But I never saw myself as a...

Yes I have said this before but it bears repeating. Doctors who said the former I dismissed out of hand. Doctors who bamboozled me with the latter ruined my life and functioning.

I just want to say that when I first became severe and learned about Wessely/BPS at the beginning of 2021, it was pretty much unthinkable that a mainstream radio program would challenge the BPS narrative in such a prolonged and direct way. Very grateful to the host, producers and everyone who...

True. But it's the NIH not some tiny funding starved researcher in an obscure university. Why couldn't they have studied more patients?

Thanks, I wasn't aware of the replication attempts. I thought their theory had to do with ion channels or something? I am quite new to all this complicated cellular biology. But yes it was more of a general frustration with underpowered studies and lack of replication in the field.

What on earth is the point of these miniscule cohorts? I know its not the kind of study where you'd want hundreds of patients but 7? It makes the ME intramural study look jam packed.

Well that sample size is disappointing. I hope they try this with a much bigger cohort.

This is the whole problem with this field. No one ever tries to replicate anything. This could be huge or it could be nothing but without replication who can tell. This is why I get so frustrated when people say there's currently nothing we could direct more funding at.

From the thread about the NIH conference in May.

Thank you. I haven't messaged with Paul. I remember seeing that he had been inundated with responses about drug trials and the like, and was hoping to do a clinical trial or a study but couldn't say more at that point. But it would be interesting to know what has been going on since then. I...

Thank you! That sounds promising. But I'm not entirely clear what 'subscribed to the RECOVER network' means. Does it mean he is eligible to apply for funding to run studies through the RECOVER program? Or an active part of RECOVER? Or just that he's on the mailing list, so to speak. P.s. mods -...

Very interesting thanks. What's the latest we've heard from Hwang? Is it just a case of wait and see? I'm excited to see where this goes next! I really hope RECOVER looks for WASF3 in long covid. It might be something to suggest at the meeting in September.