You seem to have changed your tune somewhat on dara's possible efficacy, which iirc is anti cd38. Are you still sceptical of the cd19/20 drugs like those Schibenbogen is trying?
Her trial that is designed to cure ME/CFS that is apparently underway according to this article sounds utterly bizarre. I mean I'd love if it were to work but...
It's interesting to read that as Mella seemed to question why Ritux phase 3 failed in his charite talk this year.
He was talking about the fact they had to give a lower maintaince dose.
I relate to this too. I remember when I was mild I would feel like I was wading through tar in my worse crashes. Now I feel like I permanently have that same symptom.
Yes a notable increase in clumsiness and decreased reaction speed at mild. Now at severe things startle me and there is a notable delay before the physical reaction.
As nice as that would be (and it would be great) the rest of my existence will still be pretty unbearable without an effective treatment.
I would be very happy to be able to tell people about my illness without the fear of disbelief and the shame and misunderstanding that BPS dominance causes...
Well, that's very disappointing but not at all surprising. I guess the hope for UK research funding lies solely with the Edinburgh/AfME initiatives.
Obviously I want treatments as fast as humanly possible, but in the meantime I would really love it if I could be treated like what I am - a...
Surely it is possible that there is one mechanism for the fatiguability and another one for PEM, and that they show up together in ME/CFS because the capillary thickening is caused by a process downstream of the one that triggers PEM?
On the other hand, weren't these biopsies taken from mild...
What does this even mean? We don't know the root cause of ME/CFS. This is exactly what I'm talking about, the viral persistence lot seem to have an assumption of cause that preceeds or superceeds the need for evidence.
I have to say I feel pretty skeptical about anti sars cov2 monoclonals as a long covid treatment. I just haven't seen much compelling evidence that viral persistance is a driver of symptoms.
And all the antiviral drugs that have been tried so far have had no efficacy.
I have always gotten a runny nose, sneezing and sometimes coughing fits when I am having the kind of PEM that feels seriously viral.
It happens far too often to be explained by catching colds. It is part of the reason I thought my immune system had been weakened by my triggering strep infection...
There has been no word on Recover TLC for a while. It would be good to know what drugs they are planning to try although not holding my breath after the drug choices for the first round of trials.
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