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One of the most powerful arguments that convinced me my doctor was right about my illness being psychogenic (obviously he was wrong) was that I didn't want to be one of 'those' people. And yet my doctors were wrong and my faith in them and the scientific establishment was shattered. Medical...

The idea that JAK STAT inhibitors could be beneficial for ME/LC is not exclusive to Ron Davis' group, or a pharma conspiracy. Iirc JE et al. even suggested them as one of the possible treatments in their hypothesis paper. Whether they work or not, we'll have to wait and see.

The juxtaposition of these two headlines says everything that needs to be said about the psychobehavioral school.

I do sort of resent this idea that we as pwME have to be perfect like this. I understand why, but outside of the scientific advocacy we do on here I think it is too much of an ask. The vultures will descend to pick apart what we say no matter if we're perfect or not. Look at what they've said...

Ok, maybe. But it's a very fine line to walk.

This was my experience too.

When you talk like this you disregard the lived experience of everyone whose lives were destroyed by worsening from exercise. Listening to people is not lowering the standards. If no-one had listened to pwME there would not be a single study happening anywhere. If you can acknowledge PEM from...

I know we are playing it uber cautious here, and I get that you are trying to make a point but I do find people taking this line concerning and wrong headed, frankly. We will never be able to do a trial on this. It isn't ethical. There are countless accounts of deterioration from exercise. Yes...

I didn't know that, it sounds like a better bet in that case.

To clarify I will be emailing the fundraising bloke at the Norwegian ME Association. This sounds like it would be better put to Fluge and Mella directly. I don't know if this guy will be the best person to ask. It's a good idea but iirc Kholsa has mostly invested in viral persistance studies...

Just to add to this, I did a bit of research the other day to refresh my memory. The questionaire was the COMPASS-31. And there were participants on reddit and in a private lc group im a member of saying they went from having heart rates shoot up from 60ish to 160 on tilt tests to not being...

But if the evidence is not detectable with avaliable technologies as ME/CFS currently isn't, then unless you hit on something by happenstance like Fluge and Mella did then you need to go hypothesis first.

It's good that they've done this so quickly. I still intend to email them, this weekend was a busy one for me so hopefully in the next few days. I think it may be best for someone else to contact them regarding the payments issue as I cannot quite get my head around what I need to say there...

Sharing in light of my above comment about celecoxib possibly being what is helping people (if these are real responses in this and the other celecoxib/antiviral trials) If there ever actually is a sizeable controlled study the investigators have a moral duty to include a celecoxib alone arm...

That's disappointing! What makes you think that the scans show something secondary and not immune cell presence/activity in the areas you mention above? They still seem to show something markedly different to controls though, which is interesting.

I definitely have had extreme rigours that could be described as seizure like episodes since I became severe and I have heard other sufferers say likewise.

Another question - how far is this technology from regular use in hospitals etc? Or is it so expensive it will likely only ever be used in a research setting? Would it be viable for us to discover what tracers could be made that might validate a few of our top hypotheses and find collaborators...

So could one conceivably make tracers for gamma delta t cells, gamma/type 1 interferons, or whatever other cells we might suspect are hiding from other methods of detection?

Thanks, that's really helpful!

By the way, I am a bit fuzzy on exactly what these tracers do and precisely what it is they measure. Would anyone care to explain like I'm brain foggy? (because I am!)