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  1. Kitty

    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    I don't think anyone's ever said that, as something so common couldn't possibly be a useful marker. What they're saying is that it's part of a theory of how ME is triggered and perpetuated. The next job is to try to disprove this theory; if they can't do so, then it begins to look much more robust.
  2. Kitty

    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    He's referring to a specific study – the Severely Ill Big Data study – not literally everyone with ME. Very common, more than 50% of people are likely to have them. They've never suggested that IDO2 mutations are in any way causative of ME, just that they could predispose to it. If the theory...
  3. Kitty

    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    I heard on a radio documentary that the appendix has evolved on about 30 separate occasions in various species, which would seem to argue against it being a vestigial organ. They were discussing the theory that it may be useful in immune function, and as a repository for digestive bacteria in...
  4. Kitty

    Anyone has a stair lift at home ? (Moving, part II)

    Hopefully it should make it a bit easier (fingers crossed, anyway). I'm now a council tenant, and was lucky enough to be offered a newly built bungalow. It has a pretty small back garden, but that's the only real drawback – otherwise, it's lovely. Spacious, too, as it's designed for a wheelchair...
  5. Kitty

    Anyone has a stair lift at home ? (Moving, part II)

    They are mandatory, though, if you meet the conditions. Because the safety of the occupant, and access to a bathroom, are at the core of some of the conditions, an ME sufferer with physical limitations has a good argument. If you receive mobility allowance, or have a history of dizziness that...
  6. Kitty

    Anyone has a stair lift at home ? (Moving, part II)

    I commented to my project manager that I felt lucky to have been awarded a sizeable Disabled Facilities Grant, given the pressures on local authority funding, and he explained that they don't actually provide the money. The scheme is funded by central government; the LA project-manages the grant...
  7. Kitty

    Anyone has a stair lift at home ? (Moving, part II)

    I imagine it'd be quite difficult to buy a secondhand stair lift, wouldn't it? The most expensive part is the metal rail that the chair rides on, and the measurements for this have to be accurate to a fraction of a millimetre. Even two identical houses built next door to one another would...
  8. Kitty

    United Kingdom: Getting a Wheelchair on the NHS

    @Simbindi – I'm afraid I can't find the agreement that was sent to me, which gave a list of conditions for which a home assessment should automatically be offered (which included autism). I'm not due to be reassessed for about four years, by which time everything's likely to have changed anyway...
  9. Kitty

    United Kingdom: Getting a Wheelchair on the NHS

    DWP guidelines state that people with autism should always be offered a home assessment, so it's shocking to hear that you were dragged into a centre! I was offered a home one for PIP without asking, so Capita were (at the time, anyway – it was over a year ago) at least sticking to the rules there.
  10. Kitty

    United Kingdom: Getting a Wheelchair on the NHS

    It's a bizarre attitude, isn't it. I was struggling to read small print when I got to a certain age, so I needed a solution. I chose to buy some reading glasses, which meant I could read again – sorted! Shortly after, I was struggling to walk even a few yards, so I needed a solution. I chose...
  11. Kitty

    United Kingdom: Getting a Wheelchair on the NHS

    I haven't found this to be the case, to be honest. I've used self-funded wheelchairs since 2001, and it was accepted without question on three DLA, one PIP, and four ESA applications. Assessors got various things wrong on the reports – some were a long way off-target, as usual! – but they all...
  12. Kitty

    The Guardian: 'Like someone flicked a switch': the premenstrual disorder that upturns women's lives', 2019

    I had this too (we didn't have a name for it then), but luckily it was much more short-lived. My profound depressions often lasted less than an hour, but I absolutely agree about the switch being flipped – I could feel it happen as clearly as a slap on the face. One of my final ones began at a...
  13. Kitty

    Maureen Hanson talk at OMF Symposium 2019

    I seem to recall that Dr Davies said the SS-31 peptide is easy to make, and they were making their own – have I got that right? Obviously, it would be subject to patent if used as a treatment, but it sounded as if it isn't expensive for experimental work.
  14. Kitty

    Patient survey by the Dutch ME/CFS Association - Corsius et al. 2019

    I'm happy to work on the English, but couldn't do the whole thing alone. If others were also willing to take on a few pages, I'd be happy to be on the 'grammar committee'!
  15. Kitty

    What is this?

    Could be chronic hives? This isn't usually associated with allergy. Whether the rash is itchy, always occurs in the same place, or is growing and spreading are questions that might help you find an answer. Hopefully!
  16. Kitty

    Maureen Hanson talk at OMF Symposium 2019

    I guess the 'genius' category might include viruses that appear to cause something relatively minor – like EBV and glandular fever/mono – but actually could underlie much more serious conditions, without anyone suspecting a thing? No-one's going to spend billions on a bug that makes teenagers...
  17. Kitty

    The future and funding of UK ME/CFS charities

    This is why I've given up on membership organisations and just donate directly towards research when I've got a bit of spare cash. I know you can't escape politics in any organisation, especially those run by volunteers, but it just exhausts and depresses me. I want to see money going towards...
  18. Kitty

    Fibromyalgia "Conference" via Jarred Younger email touting it

    It looks from that email as if he knows very little about the conference or the other speakers. I wonder if he's just got caught out, not having enough time to look into it thoroughly?
  19. Kitty

    BBC programme You and Yours: Are you dependent on prescribed painkillers?

    I've used tramadol for many years. I do eventually build tolerance, but I can manage it by rapidly reducing the dose, and then putting up with a pretty unpleasant 10 days on one tablet a day. After that, I start again on a low dose, which works well. Without it, I'd have little quality of life –...
  20. Kitty

    Does anyone use Topical Capsaicin Cream?

    I was prescribed one by my GP years ago, for night-time muscle pain. They seem to work in part at least by distracting you from the muscle pain by heating up the skin; it didn't help me enough to put up with the skin sensation, which I found a bit unpleasant. The 'magic spray' used on...
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