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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 other patients who don't have ME but aren't capable of sitting for long? And what do we have to do to get dealt with in the same way? There must be...

@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. Considering I've got about a 40-minute round-trip to the hospital in a taxi, that's essentially 20 minutes of safe sitting time in the hospital. There's...

Posts have been moved from Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al I agree that this study doesn't provide a diagnostic test and that it could give us useful info on mechanism, but you can add me to the list of...

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 PEM after it has kicked in (like taking a painkiller for a headache)?

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 they exerted themselves, they might get red in the face - as though they hadn't inhabited their human bodies before, and needed that pointing out to...

Years ago - decades, probably - I heard a patient refer to the 'false beliefs'/deconditioning theory as 'insulting and ridiculous'. I've never heard it described better.

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, mainly, loads of them. I barely felt a thing (very fine needle) and it was over very quickly. Because it's not your face getting injected (apart from...

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 first time and effects only show up on the second set of injections, which should be about three months later, but I wasn't able to get those. I tried...

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 alarm rather than something immediately loud. I hate waking up with a massive surge of adrenalin. I have a gradually illuminating sunrise alarm clock...

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 potentially a useful experience for everybody else if anything worked for me. That's a very good point! :thumbup: I agree that that's a problem, but...

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 patient looking ahead before they try something and trying to get the best scientific use out of it. How would this be different to Fluge and Mella's...

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 that you decided to start measuring some parameters, with a view to being an influential case study if it worked. What would you do? And if it did...

Impressive individual cases of improvement or recovery can often be a starting point for hypothesis-generation and clinical trials in any disease. In ME/CFS, the rituximab trial arose from observing impressive remissions in two PwME treated with rituximab for their cancer (IIRC). But lots of...

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 harder evidence. We're used to being in that position, I think! But it's a disappointing one to be in after decades of experiencing the problem.