This is a post collating what I learned, when trying to access surgery as someone with the symptoms of Severe / Very Severe ME. I hope it is...
And in many cases, including the conditions you’ve mentioned above but also others, not giving the correct diagnoses or not referring onwards, can...
Yes, you are right, and also it is still a diagnosis of exclusion from NICE’s point of view, as far as I can see. (my bolding below): the NICE...
Hmm.. not really. ANS dysfunction, ie dysautonomia, is found in many conditions which have been demonstrated to be caused by a physical...
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...
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