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That sounds nasty. Glad she's better now.

That's concerning. Fluge said the worsener was severe not moderate in the presentation and chalked it up to the exertion of the visits. Moderate makes that much less likely.

Are you talking about participants in the phase 2 trial?

These people should look at the history of resistance movements and feel incredibly grateful that people with MECFS are so steadfastly non violent in their opposition to the immense harm that is being done to them. Disrupting a conference full of people saying you are not really sick is not...

Recycling the 'asthma is psychosomatic' trope from the fin-de-sicle era are we? Proust's father would be proud.

Any nocebo effect that is even vaguely credible is a short term thing like this. It's criminal that phenomena like these have been conflated with the symptoms of people who are sick and suffering long term.

I've seen you post about your dara trial elsewhere I think, and I am very sorry to hear it ended up this way. It sounds incredibly scary. I hope with more time your functioning improves.

I think last year during the Q+A after his dara presentation, Fluge said an American company was considering it, but Fluge thought it was too soon - iirc he said 'maybe in five years'. Who knows, maybe that company will go ahead with it though. It would be really good to confirm for certain if...

:banghead::banghead::banghead:

This is really really frustrating. So in order to get into the trial they have to have 'responded' to immunoabsoption, which as we all just saw probably doesn't work. I am concerned this could affect patient selection in a way that could affect the results. What if the patients who show some...

No absolutely not! My depression got significantly better when I was GETing myself into oblivion. There is no way it was worth it.

So how do we square these interesting plots with the negative HLA analysis in DecodeME and the failure of the immunoabsoption phase 2? Could this be connected to a) JE et als idea about antigens to junk in their hypotheses or b) Lipkins findings of immune overreaction to various things in his...

Why does this regurgitated nonsense continue to be reported as shiny new science? You can't pretend to be a 'progressive, kind caring paper' or whatever and then promote the sort of nasty stigmatising neo-Victorian psychobabble that destroys the lives of so many people.

Do we have age of onset data for dara responders/non responders? Is it possible that they fall into the two age of incidence peaks?

Couldn't have put it better. Its a fantasy based around a just world fallacy and eugenecist ideas about deserving and undeserving sick people.

Because we have no good evidence that there are a dozen+ subtypes of MECFS. Under the MECFS syndrome heading there may be one disease or several but there is no good reason to stratify patients according to vague overlapping criteria. This stuff is rolled out over and over again by people who...

Do you have a source for this? It may be relevant to something I'm (slowly) writing

Should we have a thread to discuss these Michelle James PET scans? I am really interested in them. She said she'd publish late last year or early this year before. I wonder what the hold up is.

100% agree, no excuses for not doing step count.