This only describes mild & moderate PwME though, surely? I think I’ve seen you mention this elsewhere too when talking about Ramsays disease, and...
Yes I found it useful before in terms of bringing down heart rate & reducing palpitations. That reduced the dizziness. However, it didn’t change...
Cardiologists can prescribe it off-label for PoTS / inappropriate sinus tachycardia / dysautonomia. The cardiologist wrote to my GP, who...
No. (Been taking for a couple of years now).
For pretty and comfortable clothes, I buy trousers from a site called ASOS - not sure if that is available where you are. But they have a large...
I tried this when I was in hospital. (The shampoo cap). Not sure if it’s the same one, but it actually makes your hair quite wet, and then I was...
I just wrote a blog post about beauty and using makeup when you have very low energy and chronic illness. I thought PwME here might enjoy the...
Thanks for your post - it was interesting. How much more expensive is it per person, @Simon M? I know DecodeME was given 5 million pounds to do...
I edited my earlier comment, just to be clear that severe ME was my diagnosis at the time (it is not anymore), but I had severe symptoms and in...
Hi @Jjess I live in London, so although I do have a hospital I would recommend who have been brilliant with severe ME (my diagnosis at the time),...
Yeah! I think it’d be good to have it all in one place on a new thread.
I don’t go on social media much. So I don’t really know the effects of the new NICE guidelines. Has much changed? Are clinics (or GPs) now seeing...
@strategist I have a friend who was going through a process of diagnosis for channelopathy, so I did some reading to support her. so I just...
Yes, almost constantly after exertion to be honest. This is my main symptom. (Then there’s the light & noise sensitivity, migraines/pain and so...
I’ve been thinking more about this the past week or so. I don’t think your first point will turn out to be correct, because I went searching about...
I was diagnosed with probable metabolic myopathy, with an ME-type picture (And mitochondrial myopathy is one type of metabolic myopathy). So...
I had my booster a few days ago (Pfizer), I felt more exhausted the next day and had nausea. Also that arm was hurting a lot, but I always get...
I chose only 1 from treatment and management, 7 from underlying mechanisms, and 1 from health services (about hospital, due to my personal...
if you are talking about the autism health passport - you can fill that in by yourself at home (I did!)....
I tried to do some reading to understand it, maybe this helps others too? Common genetic variants are those that are found more commonly in the...
Separate names with a comma.
