Very sorry to hear about other people's bad experiences and lack of access to care. The big question remains: how are hospitals dealing with...
@Jonathan Edwards I'd be very interested in your views on this!
Like many PwME, I struggle in outpatient clinics because my OI means that I can only sit upright for about an hour before I need to lie down....
Posts have been moved from Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting...
I'm wondering if it might even be a bad idea if it masks a symptoms that's a useful guide to not overdoing it.
Anybody know if what is being proposed is a drug to prevent PEM (by tackling some underlying mechanism that limits our activity) or a drug to mask...
Is this as groundbreaking as I'm hoping? How impactful do we expect this to be? I don't know how to put this research into context.
What kind of thing would reactivate the immune responses?
I remember that in the instruction manual for PACE therapists delivering GET (or was it the CBT arm?), was an explanation for patients that if...
Years ago - decades, probably - I heard a patient refer to the 'false beliefs'/deconditioning theory as 'insulting and ridiculous'. I've never...
No control condition...
Here's a video of Dr Mauskop doing the injections for migraine in four minutes.
You might like to read the link to Dr Mauskop's work in my above post and I think it will set your mind at rest! You get injections in the scalp,...
I tried botox by a doctor with a very good track record of success for it and it had zero effect. Apparently it doesn't work for some people the...
I'm about to try to tackle my poor sleep again, and am looking (again!) for an alarm clock that will wake me up gently with a gradually louder...
Not specifically, but I'm once more at the stage of casting about for new and reasonable things to try and was wondering what would make it...
We are oddly at cross-purposes! :) This N=1 attempt would be a trial if it had controls and enough patients - but it's not a trial, it's a...
Suppose, though, that you were the patient. You knew you were going to try an intervention and you had high enough hopes that it was going to work...
Impressive individual cases of improvement or recovery can often be a starting point for hypothesis-generation and clinical trials in any disease....
Yes, it does, Mango, and so does the discussion. I think it shows that we have guidelines, but based more on clinical experience or theory than on...
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