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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.

I'm glad to see this: last time I heard anything about ME/CFS in Germany was being told it didn't exist there ... (admittedly a long time ago now).

Two separate tape recorders, microphones and unopened cassette tapes (what they?!), apparently. It sounds as though Argos may be doing quite a good trade in them, from what I can gather from the B&W website! (I'm sure there must be a good secondhand market for the recorders once people have...

I've just found this petition which someone has set up to make the recording of PIP assessments mandatory: https://www.change.org/p/parliament-mandatory-recording-of-all-pip-assessments In our case, it would certainly back up the fact that we told the assessor that caree made a half-mile trip...

Sounds like something I get (at least on the hands) - and I don't have ME! Are the spots on the leg related to the hair follicles at all, perchance?

I notice that a couple of people have mentioned burping: is this something that's common with ME? My caree gets it when she's particularly exhausted, and it has a noticeable smell. Very odd.

I fear that depends on your location: mine told me they didn't get the funding to help with appeals :(

Thank you to everyone who's responded. Thanks for the suggestion - I'll ask her whether she's been checked for it recently. Looking at the link, I see it also mentions that the symptoms might also be those of hypothyroidism, which she does have. Ah, the words "full on crash" are ringing...

Thank you, Blueskytoo. I'm afraid I don't do Facebook, which is obviously a major problem :(

I suppose this is probably the right place to post this: my caree, over the past few days, has been complaining of a prickling/tingling feeling in her hands, feet, her scalp, sometimes all over her body, more or less. I suspect it's linked to stress. I wonder whether anyone else has had this...

To add to my list of potentially useful sites: I hadn't thought to look there because I don't really regard ME as a disability as such, but the Scope website seems to be active and contain a lot of discussion on PIP, ESA and so on. Still trying to find an advocate, and thinking I may need to...

Well, after wearing myself out doing the ESA questionnaire, woudyabelieveit, we got a decision to continue as-is, no face-to-face, nothing! Something went right for once - although possibly it was simply because they realised she'd be too old to qualify pretty shortly and it probably wasn't...