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Open label? Open label? What is the point of an open label phase 3 trial? Surely that's just a very large pilot? And this study was supposed to report in 2023. What exactly is the hold up? I was hoping we'd at least get good data on famotidine/loratadine in an RCT. Oh well. Maybe the...

Agreed.

This article is good, although I think if it's intended for doctors the anecdote about the teeth is the exact sort of thing more callous doctors who believe we're all hypochondriacs tend to laugh at. It was good that the conclusion highlighted DecodeME. And the section on disengagement from...

It is insane to me this trial has taken what - four years? Without adding other drugs. These are very basic drugs, and if they help pwLC we should have had that info years ago and moved on. There should be a Stimulate ICP anti cd38 or even JAK inhibitor trial in the works. There should have been...

Oh, it's just an abstract! I hadn't noticed.

Does anyone knowledgable have any opinions on whether this paper in fact strengthens the groups previous findings or whether it repeats the problems with the previous papers at a larger scale?

Would this count as a 'large scale investigation' as far as patch clamping goes then?

https://immunitybio.com/immunitybio-announces-phase-2-study-of-anktiva-in-patients-with-long-covid/ Seems like theyre thinking along viral persistance lines Or are you trying to boost your NK count for Daratumumab?

That's interesting and a little dismaying as I had been entertaining a bit of hope that these findings might be relevant for ME/CFS too. Especially in light of the JAK-STAT trials. On a related note, I remember you saying that if something you were speculating about had merit then hopefully...

How long do you think we are going to have to wait to find out if SequenceME got funded? Last I heard they were seeking funding in the states and maybe we'd know by end of November whether that was successful.

Do you know of any similar studies that have looked at JAK STAT pathways and Il-6 in non LC ME and come up negative?

No need to say anything, but thanks. I shared initially to show that there are myriad reasons why people might keep going back to the doctor, or not fully understand what is going on with them. Our story is particularly sad in that it happened to both of us but other than that I don't think it's...

After our bout of strep, both my partner and I developed chronic tonsillitis. Hers was much worse, with big white patches on her tonsils and within a year and a half they were in such a hideous state that doctors refused to perform an operation where she would need to be intubated until they...

I suppose we have to push for the right people to get involved. This is such an appalling situation.

Those pesky lymph nodes have a lot to answer for!

Which pathways/signals are you referring to here?

I think this is a very important point. It shouldn't be up to us to word things perfectly so NHS administrators and BACME can't twist our words and give us GET 3.0: Now With More Patronising Bullshit. Patients want to be treated by doctors who understand the condition and given adequate care...

Any word on how people respond?

In what way is it obvious?

That gives some creedence to the idea that NK cell separation in responders/non responders is related to drug action not disease mechnism.