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It's an absolute disgrace. I probably mentioned above that if I were a London Borough or two over I'd have loads more options. Coverage ought to be more or less the same throughout the country.

(BTW, I've added to my post #23)

What's a Centre of Excellence for ME? Is there one in Norwich?

Who are OMF? I'm concerned: are they looking for professional translators (in which case they ought to be paid!), just people with English and French Canadian, or what? Medical translation is a very difficult field, and potentially very dangerous if you get it wrong, so not something to be...

Oh dear, oh dear, disastrous appeal :( I'm going to write more about it in the Members Only bit, away from prying eyes.

She actually said today that it's when her whole upper body, especially the head, tenses up, and the insides with it.

Worth noting, perhaps, that that link is now dead, and a search in the public part of the website doesn't bring up any hits for nimodipine.

Although of course it's the fatigue which isn't substantially alleviated by rest, rather than the ME itself, which is rather what their phrasing suggests ...

Coming rather late to this, but I believe that most public libraries in the UK have access (via their websites? - mine does) to the electronic versions of most UK newspapers, so if you're a member at least you ought to be able to access it that way.

I'm planning on keeping the upright hoover downstairs, and the cylinder version upstairs in one of the bedrooms. Problem solved, I hope!

NelliePledge, if you get to that stage before us, would you mind letting me know how it works out, please? We're supposed to be buying somewhere, but it currently doesn't have a downstairs loo (there's just about room for one under the stairs), so I fear a stair lift is going to be essential...

I've been advised (in the UK) that it's possible to rent them. I assume that would be more expensive, but it also means you can ask the people to come and take them away should you find they're inappropriate.

Still the case, I'm afraid. Can't remember whether it's in our PIP report or whether I saw it somewhere else, but it seems it still "doesn't count" unless it's been prescribed.

In the writing industry in which I work, Dragon Naturally Speaking is still regarded as the best available, as far as I know: it comes in various levels, including, I think, a technical and scientific level which might be helpful to a surveyor. And of course if he's using it professionally then...

Mine too, not that that's much use :( A couple of years ago, when my caree had slipped into a horrible hyperanxious state in addition to the ME, we were unfortunate enough to have 4 loads of major building work going on, overlapping if not necessarily simultaneously, all within about 6 houses...

Excellent, thank you very much, Simbindi.

Any reason for leaving out PIP? I think I started a thread with useful PIP-related information in here somewhere ... Ah yes, here it is: https://www.s4me.info/threads/uk-pip-appeals-advice-recommendations.8305/

Well, my caree has been on this, I think to augment her existing antidepressants (supposedly prescribed to aid sleep) and to deal with some serious anxiety issues, but not directly for treating ME/CFS. She came off it for a while, got a load of stressful things dumped on her within a short...

Yes, why is it that LSTMH is the one to be operating that? (Perhaps a question for a different thread?)

Really? What do you mean by that, Sid? My caree's GP has just upped her dose of it to try and improve things, so I'm rather concerned.