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Any idea what they might be referring to here? Like do they have drugs in mind or is it just, this seems to help so lets see how its helping and and maybe that will point us to better drugs. And if cyclo is beneficial for a subset of us, surely there is a point of severity where the toxicity...

Yeah maybe. Like he's so angry that we dared criticise his dogshit study he's decided to leave us in the dust and tell everyone we're not even that sick on the way out. Honestly they desperately need to replace him with someone like Mareen Hanson or Akiko Iwasaki. EDIT: And kick Wallitt to the...

Yeah I hope you're wrong but it seems like a distinct possibility. Unless they have found it helps but it's not a one and done thing like they claimed? Like monthly or whatever infusions needed and they want to move on to phase 3 faster. Or they just want to move onto phase 3 asap and do the...

In the early days they were talking a lot about bc007 improving red blood cell deformities and increasing tissue oxygenation or something along those lines. So perhaps its to do with that. Or perhaps the autoantibodies are somehow relevant even though the levels aren't associated with ME/LC...

Its completely irresponsible! Of course a small proportion of people will stay worse after a CPET - all intense exercise carries that risk for pwME why can't they just be upfront about that. This is like trying to cover their own arses legally instead of providing informed consent.

Is he fucking kidding? After all those years of studying it? I mean my expectations were low as possible post intramural study but Nath has broken through the floor. Despicable. Absolutely despicable. My first impression of Nath was him telling Body Politic in an interview that it doesnt mean...

I'm not trying to change their minds. At this point I am concerned that even a biomarker and treatment won't change these quacks mind as they've bought in so deeply to the BPS professors new clothes. This was part of a debate over long covid and I want to be able to show evidence to other people...

Thanks, that's very clear. Fingers and toes crossed then I suppose!

I recently had an infuriating run in with a doctor online who was going on and on about the 'well documented' mental health connection with ME. I.e preexisting conditions. Saying things like its a shame the patients arent open to it and ignoring my story of how being open to it destroyed my...

I'd like to ask you a little bit more about this if you dont mind: Could a drug to order really be made available so quickly? I was under the impression a new drug would take at least a decade to progresss through trials and reach patients. Do you have a reasonable best case scenario for how a...

I understand. I am certainly not advocating for gung ho administration of anything and everything. I am afraid im out of spoons so cant reply further

We are in agreement there!

I do agree with a lot of what you say and I sympathise with your concern about safety for trial participants. And I'm sorry to hear about the patients that died. As you say, drugs are toxic and can have adverse effects. But the adverse effects of leaving people to rot when there are things...

Frustrating non answer. I've been so curious as to why they are trying this. And wishing it was a shorter trial - 2029!! End date! But interested because of Ron Davis'/Phairs interest in JAK STAT inhibitors

Since you ask, here are some examples of projects I would try and fund if I had the capital: Replication studies on small but promsing ME and long covid papers. E.g. Wust muscle biopsies, complement system, Wirth muscle sodium, IgG mouse model. More than I'm too brainfogged to think of right...

Okay that's fair enough. But so many of our medical professional advocates do seem to believe that we are simply getting no help, when the reality is much worse.

Dr Edwards, I speak for all of us who have been harmed by medical neglect and gaslighting when I say that is something that the NHS can do: teach pacing. I lost a collosal amount of functioning due to medical gaslighting. I went from mild to very severe and bedbound within a year. I could...

This idea is fantastic, and I really hope you lot can make it happen!

To be clear about yesterday, I never meant to argue that we had a clear case of research misconduct. I am outraged that lying to and decieving patients to such an extreme degree is not considered misconduct. If you can be detached and cool about this, great. But bps theories destroyed my life...

I don't see how using a biomedical study which participants have been promised will move the field of ME research forward and help find biomarkers etc as a Trojan horse to launch a new theory as to why those people just think they are sick, and repeatedly lying to those patients and the the...