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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 my sensory needs.

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’ve had my legs completely collapse from underneath me due to weakness and had to be carried. It happened again when I was pushed to exercise/walk...

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 found it increasingly difficult to tolerate the other treatments. It’s only licensed on the NHS for cluster headache, but she said it will help with my...

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 turn out not to be doctors, and even when a doctor does manage it, things keep going wrong). I was contacted by a journalist who wanted to interview...

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 before too, but had forgotten):

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 get answers one day. Yes and it was very disappointing & upsetting for me to find this out. Especially after my doctor kept saying that I was having...

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 could find it :)) Ok so because I’ve been reading a lot about whole genome sequencing (on the NHS) recently, and I’ve gone through it all myself, I...

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 write mine down too. I’ve had period problems for a very long time - never got a diagnosis of what is actually wrong because I never could tolerate...

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 specifically & would rather focus on their other conditions. When I knew him he didn’t discuss ME. He is not hostile towards it but I don’t think he...

(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 then I had a setback and was vomiting continuously), is that doctors didn’t want me to have a tube again, not even an NJ tube which the dietician had...

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 was a patient who had chronic fatigue syndrome/fibromyalgia, he asked if I wanted to go on it. He said all the doctors in his clinic had been given...

I’ve written a new blog post, about finding clothes that are cute and comfortable and disability & sensory friendly :) (Fashion/pretty clothes has always been something that makes me happy, but over the past few years I sort of lost that happiness). I’ve been rediscovering it again now by...

It is legally prescribed in the U.K., doctors (neurologists, pain specialists etc) can prescribe it outside of the NHS approved conditions, but only privately. So you’d have to pay for the medication cost which is not cheap (but looking at sapphire medical, they’ve reduced prices a lot now...

@Haveyoutriedyoga the best card that is currently available is, in my opinion, this one: https://stickmancommunications.co.uk/product/me-card/ The “plain” ME card wording is really good for severe ME I think. They also have this one with a slightly different wording...

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 pretty much every other type of invasive investigation. They put needles in and do little electric shocks. It’s not pleasant - the needles are painful...

On the Protocol for DecodeME which was posted on this forum in July: https://www.s4me.info/threads/protocol-decodeme-community-recruitment-for-a-large-genetics-study-of-me-cfs-2022-devereux-cooke-et-al.28666/#post-429466 It says: “Those eligible for the study are at least 16 years old, pass...

Actually I always found the spoon theory very useful & feel it describes my symptoms very well. And I do have energy limiting illnesses… Spoon theory doesn’t assume that energy always diminishes in line with the activity, in fact (for example) in the blog that is linked above, it mentions that...

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 didn’t know - you wouldn’t go see a general neurologist (and definitely wouldn’t go down the path of FND!) to get help for facial pain. Your best bet would...

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 I had to come off it due to side effects, but it’s more effective than gabapentin I think. I also use lidocaine patches every night on a particular...

I have heard only really bad things about this service, my impression is UCLH is one of the worst places in the country to go if you have ME. Also, steer clear of their PoTS / autonomic unit service if they refer you there : you will almost certainly come out with a “deconditioning” diagnosis...