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I may well be misunderstanding the totality of the discussion here as I haven't read it all. I am reacting to your early posts and the implication that patients are somehow to blame for how seriously this illness is taken. It is reminding me of the time when James Coyne briefly became interested...

Who they? Oh, you mean social media users, which means perhaps the majority these days including doctors! Or perhaps you think I hallucinated the episode I described? I admit it was a little strange, but I've had better dreams! And I am still hoping to wake up young again, free from the...

I find it rather amusing that there is this assumption by some that ME/CFS patients want to claim they have something called MCAS. I am not sure I had even heard of the term but somehow my GP (yes NHS GP) persuaded me that should see a nutritionist who specialised in this. Not having much to...

Well it is factually correct to say a diagnosis of ADHD will largely depend on assessing life history, especially childhood behaviour, that was certainly my experience at an assessment two years ago. Whether it is possible for a kind of "ADHD" to develop later in life is an interesting question...

I won't be getting COVID vax in that case. Moderna booster caused a horrible upset four years ago. Not going to risk that again.

Is it the case that only mRNA covid vaccines are currently offered in the UK now?

I don't doubt that the cardiovascular risks are real. I am surprised though that there aren't more threads here on the subject of cannabis and ME. For over a decade it was about the most effective medication I had for some of the symptoms associated with PEM, until sadly it wasn't. I often...

Good to know, thank you. I apologise if my rather crude illustration of why I think wishing to avoid association with certain categories of disability is morally problematic was offensive to anyone. I do however think it is worth considering how what we say might be interpreted by those in the...

Regardless of the wisdom of jumping on a thread late in the evening, in the cold light of day I stand by what I said. Of course the psychogenic assumptions currently widespread aren't helpful. However I suspect that with an official "physical disease" diagnosis that implies a whole soup of...

Also I have know idea how to use the quotation system here on the forum, so decided to delete a confusing response!

Sorry, but I am not at all desperate for that, in fact I rather fear it. As I move beyond middle age the last thing I want is a label that can be used to justify not testing for all sorts of other conditions that could occur as I get older. Although I do not have severe ME, I have spent much...

Would this drug risk adversely lowering blood pressure in people who do not have hypertension?

The study on zebrafish — which share 70 per cent of their DNA with humans — found that amlodipine can combat nerve cells in the brain that fire too many electrical signals, triggering hyperactivity. I'm not sure if that is a cause of "hyperactivity", but I didn't think that was the commonly...

Uniquely, outcome data is collected from 98% of people who have a course of treatment. I seriously doubt that! I had some NHS funded talking therapy last year (not in anyway connected to NHS ME clinics, would not go near those!) All that is offered is some version of CBT, so what are they...

Who knows if adrenaline is involved in this feeling, but does the fact that benzodiazepines help (some of us) suggest that GABA/Glutamate issues could part of it? I have no idea but was intrigued to find that other GABA modulating products have been introduced recently, if for a different...

I think this is more or less what I refer to as PEM for myself. It may or may not be followed by a crash for a day or so, but the "wired" or often overheating feeling are more predictable, and the most unpleasant of my cluster of symptoms that may or may not be called PEM by others! What helps...

The imagery won't mean much to me. If I do get hold of them I might have to find a private consultant to view scans, which is going to be another learning process to go through. I am hoping it doesn't come to that.

Do you mind if I ask which Covid vaccine was problematic for you? I had my two Astra Zeneca jabs with no problem, then Moderna booster. That one put me into a terrible flare up for about three months, preceded by scary weird cardio symptoms! It's put me right off mRNA vaccines which is...

Does ME count as a severely weakened immune system though? Perhaps it depends in your GP

This is interesting. I have just been prescribed omeprazole, a year after being prescribed migraine medication. The link doesn't seem to work so I don't know if this study was well controlled in case of an association between migraine and reflux irrespective of medication? I'm a bit wary of...