Yeah, have seen two of them, will PM you soon.
She was working at the ME trust a while ago, I spoke to her then. She was really kind and understanding and wrote an amazing letter advocating for...
Yes this happened earlier on in my illness (first few months), when I used to push myself to walk outside the home. After a short time walking,...
I spoke to the headache nurse and they’re going to send me out a Gammacore (vagus nerve stimulation device), as I have cluster headaches and I...
My GP surgery was taken over by Centene / Operose and it’s been horrendous (my whole care is pretty much managed by pharmacists / “clinicians” who...
From the article @Arnie Pye posted above, this part was interesting and important and also relevant to me (and I think I had read this somewhere...
Gosh, it looks like even the 100,000 genomes project wasn’t as extensive as they claimed! I’m sorry that happened to you. I hope you’re able to...
Whole genome sequencing - NHS (I had a request to share some of my information about whole genome sequencing on a public thread so more people...
I’m not sure where to put this, but as people have been discussing their experiences with the TV scan, MRI, endometriosis etc here, I thought I’d...
He works closely with PoTS, EDS and MCAS doctors and I got the impression from him (& the PoTS doc etc) that they don’t really get involved in ME...
(my bolding of the quote) The experience I had in hospital, (after I had come out of ICU & my initial NG tube had already been taken out, but...
When I was recruited to the PRINCE trial (CBT for “MUS”), the rheumatologist at the Lupus clinic had a stack of leaflets already printed out. As I...
I’ve written a new blog post, about finding clothes that are cute and comfortable and disability & sensory friendly :) (Fashion/pretty clothes has...
It is legally prescribed in the U.K., doctors (neurologists, pain specialists etc) can prescribe it outside of the NHS approved conditions, but...
@Haveyoutriedyoga the best card that is currently available is, in my opinion, this one: https://stickmancommunications.co.uk/product/me-card/...
I found it less painful than an endoscopy, colonoscopy, transvaginal scan etc. But it may be that I’m not so bad with needles, but am bad with...
On the Protocol for DecodeME which was posted on this forum in July:...
Actually I always found the spoon theory very useful & feel it describes my symptoms very well. And I do have energy limiting illnesses… Spoon...
I just wanted to mention, and sorry if people already know this, but I don’t like the idea of people suffering with severe pain because they...
I take Gabapentin 900mg and Nortriptyline 10mg (trying to increase it to 20mg soon). I’ve also tried pregablin which imo was amazing for pain, but...
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