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  1. Kitty

    Questionnaires - design, validation and use in ME/CFS research - discussion thread

    My first response would be: only if those psychological factors are what is being studied. Psychological factors aren't directly relevant to the diagnosis or management of physical diseases. If living with a physical disease results in psychological, emotional or social problems, then of...
  2. Kitty

    Decreased NO production in endothelial cells exposed to plasma from ME/CFS patients, Bertinat et al (2022)

    In my theories for delayed PEM (which I admit have no basis in actual knowledge), one explanation is that the delay results from processes that take time to ramp up. For instance, I often have 'immune' type symptoms. This doesn't mean the immune system is actually involved, of course; but if it...
  3. Kitty

    UK: Disability benefits (ESA and PIP) - news and updates 2021 - 2022

    Merged thread New rule on recording PIP assessments Benefits and Work have released the following news announcement today regarding the rules about recording Personal Independence Payments assessments...
  4. Kitty

    Let's talk wheelchairs and mobility scooters

    Sorry, Jenny, about the leg raise thing: presumably you wouldn't be moving it around with the legs raised (that would be hard indoors unless you've got very big rooms and no tight corners?), so would a lightweight camping table with a cushion on be an option? Sorry if that's a daft suggestion...
  5. Kitty

    Let's talk wheelchairs and mobility scooters

    My main thought is that it's a rear-wheel drive, which are the most difficult to manoeuvre indoors? Mid-wheel and front-wheel are much easier, so they're the usual preference. Do you need to be able to transport it? If so, you are limited with the drive options—but if not, you might get a...
  6. Kitty

    PEM for those who are, or were, mild sufferers, how would you describe it?

    Not true for me; my ME symptoms are less severe now I'm in my 60s, retired, and pacing, than they were when I was 17, working, and not pacing. I've had some nasty relapses but always recovered eventually. My walking ability is poorer, but it's largely due to muscle loss in my lower legs caused...
  7. Kitty

    PEM for those who are, or were, mild sufferers, how would you describe it?

    Mostly severity, I guess, but it also comes down to type of work and level of autonomy. If I'd worked in a job where I had to be on my feet all day, such as nursing, I'd have lasted months at best. Same goes for work demanding a consistently high level of cognitive challenge and flexibility...
  8. Kitty

    PEM for those who are, or were, mild sufferers, how would you describe it?

    And mine—everything he says. I somehow managed to work through 38 years of ME, though there were three or four lengthy periods off sick. There just seemed to be no practical alternative, until additional illnesses made it impossible to continue.
  9. Kitty

    Compression Garments

    I can't answer very comprehensively, @lunarainbows, but I'll have a go. Under the guidelines, my GP can only prescribe if there's evidence of venous incompetence, but each clinical commissioning group may be different. I started out by finding someone on eBay who I think was claiming them on a...
  10. Kitty

    Will it ever be reasonably safe for PwME to go back into society, post-Covid?

    I'd somehow picked up the impression that this was often the case, but I've since read press articles written by virologists saying that it isn't necessarily so, and it can be rather a dangerous assumption. The articles seemed to be saying that, as long as a virus has enough time to replicate...
  11. Kitty

    Doctors with ME: Putting it into Practice: What NICE ME/CFS means for GPs

    Yes, I agree (though doctors might use 'unambiguous' reluctantly!), but I'm not sure the second part of the sentence even needs saying. GPs usually have to exclude other things, either because it takes a while to get a full symptom profile from the patient or because clinical guidelines say they...
  12. Kitty

    Perceived working mechanisms of psychosomatic therapy in patients with persistent somatic symptoms in primary care.., 2022, Wortman et al

    Indeed. The working mechanism of Jonathan's hoovers may be to make enough noise to dissuade the cat from sleeping in an armchair, thereby removing the need to vacuum hair off the seat. But only if he has a cat.
  13. Kitty

    Doctors with ME: Putting it into Practice: What NICE ME/CFS means for GPs

    You'd also be in trouble without it, and have to leave a lot of people with no diagnosis at all. There are some really common conditions that are practically impossible to measure accurately, and often rely on response to treatment as part of the diagnostic process—which, on a rigid...
  14. Kitty

    Doctors with ME: Putting it into Practice: What NICE ME/CFS means for GPs

    I wonder if the DwME position just comes from experience of treating other illnesses which have no objective biomarker, but which doctors consider amenable to positive diagnosis based on core signs and symptoms? The process will involve an exclusion exercise, but that applies to practically...
  15. Kitty

    Repurposing Drugs for Post–COVID-19 Fatigue Syndrome Methylphenidate, Duloxetine, and Brexpiprazole, 2022, Manu

    If she might be able to tolerate gabapentin, it can work like a dream for these issues. I had awful trouble, constantly needing the loo because of pressure on my bladder and always in pain from muscles that wouldn't relax. It really helped; like everything it has some unwanted effects, but at...
  16. Kitty

    Let's talk wheelchairs and mobility scooters

    For those who're already using a wheelchair or scooter, I can't recommend these under-trousers highly enough at nippy times of year! They're comfy, flexible, easy to get on and off, and you can wear them under some loose trousers and look reasonably like a normal human being. When I first...
  17. Kitty

    Let's talk wheelchairs and mobility scooters

    Moderate fluctuations like 8 to 10 kilos shouldn't be a problem unless you're using an ultra-lightweight chair with very low power, which is unlikely to be a suitable type for you anyway. Your height and body proportions are more important—things like the length of your thighs, which you need to...
  18. Kitty

    Let's talk wheelchairs and mobility scooters

    It can almost be as cognitively challenging as driving a car if there are people, dogs, and children moving around unpredictably as well as the various fixed obstacles around you. I'm used to it because I've been doing it for 20 years, but the demands on someone who's severely affected shouldn't...
  19. Kitty

    Let's talk wheelchairs and mobility scooters

    Yes, at least if it's a powerchair. They're called attendant controls, and can often be retrofitted to chairs that are currently set up to be controlled by the occupier. I've never seen it on a scooter, but it doesn't necessarily mean it's impossible. It might simply be that scooters are...
  20. Kitty

    Let's talk wheelchairs and mobility scooters

    I've honestly never found steep hills a problem, but I'm of average body weight and I don't use lightweight wheelchairs. Unless you need a bariatric chair—in which case, take advice from the supplier—anything that does 6mph should get you up a hill as long as your battery isn't just about to...
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