Search results

  1. Kitty

    Neurovascular Dysregulation and Acute Exercise Intolerance in ME/CFS: A Randomized, Placebo-Controlled Trial of Pyridostigmine, 2022, Systrom et al

    The site says you have to login or make a payment, so unfortunately it's not free to read.
  2. Kitty

    Guardian UK article, Doctors could soon face action over ‘misleading’ social media posts, April 2022

    I guess it depends whether they're speaking in their professional capacity or not. We can all witter on about anything we like as private individuals, but when we're on the clock, the rules change.
  3. Kitty

    Post-viral mental health sequelae in infected persons associated with COVID-19 and previous epidemics and pandemics:...., 2022, Zurcher et al

    Extra-terrestrial teacher: "And of course that lot died out because their ecosystem was collapsing, but half their researchers carried on sh*tposting about made-up mental health disorders."
  4. Kitty

    Help needed: Send messages to Hungarian pwME for my ME Awareness Day project

    From me: Hello from Kitty in the middle of England. I have had ME since 1976, so it has been a long journey, but I am very excited about the new study into the genetics of ME. Medical researchers are working directly with patients, and hope to receive DNA from 20,000 British ME sufferers to...
  5. Kitty

    Open Natelson patient recruitment, NYC, USA

    I hope they're not going to put the unbalanced ones in the rocking bed, because that is NOT going to go well...
  6. Kitty

    Crashed. Could hayfever have done this?

    As @lunarainbows says, yes there are. Talk to a pharmacist, they're really helpful. Some people can mix a drowsy with a non-drowsy antihistamine, for instance, as their actions are slightly different; I was also cleared to take fexofenadine and loratadine on the same day but 12 hours apart. It...
  7. Kitty

    Meaning of the word 'malaise' and its use in the term Post-exertional malaise (PEM)

    One of the problems I have with the medical definition is the term vague. If "vague" means illness caused by lots of different symptoms then it might just about pass, but a lot of ME symptoms are specific: certain muscles groups that never stop hurting, migraine, nausea, swollen neck glands...
  8. Kitty

    Have you participated or organized a journal club?

    Oh, thank you. I'd never heard of it before.
  9. Kitty

    Have you participated or organized a journal club?

    I'm afraid I've never heard of a journal club. Could you possibly give a bit of detail about what they are, in case people in different areas just have different names for the same thing?
  10. Kitty

    United Kingdom: Nottingham ME/CFS Service

    Local ME patients know it's to be avoided like the plague, and some GPs do too. My previous doctor, now sadly long retired, warned me two decades ago that the clinic (in its previous incarnation) mainly offered exercise classes, and someone recently moved to the area mentioned in a WhatsApp...
  11. Kitty

    The new NICE guidelines - do they affect benefits at all?

    I've only filled in the form once, so I couldn't remember. But I do use it indoors, always in big buildings and sometimes at home, so I guess I said that. Ooh, get you—posh! :laugh: I've had the updated rates for PIP and ESA in the last few weeks, and ours are still in the brown 'uns. You've...
  12. Kitty

    The new NICE guidelines - do they affect benefits at all?

    I've never had an assessment for ESA at all since my first claim in 2014, and I've never been given a fixed award length. Maybe someone has to look at it periodically, but they've never contacted me about it. So it is technically feasible, but I don't know how the decision is made. It's...
  13. Kitty

    Silent/soundproof living: tips and guides to achieve living in silence

    My MacBook is silent, as was the previous one. I don't think I've come across a computer that activated a fan in normal use since they had spinning disks. My last one eventually got to the stage where it would start the fan if I was doing something like watching a film and uploading tons of...
  14. Kitty

    Silent/soundproof living: tips and guides to achieve living in silence

    I don't typically have a problem with this kind of device, but at one point I did have a blender that made a noise I couldn't bear. Trouble was, it chopped large quantities of ginger more efficiently than anything else I'd had, and I couldn't afford to try several others. So I timed how long...
  15. Kitty

    Postexertional Malaise Syndrome?

    I'm not sure it's worth putting a lot of effort into renaming a condition that we still can't explain, because it's fairly likely that whatever is chosen will, in at least some respects, be as inaccurate as ME. Also, it feels as if there's something important in successfully "detoxifying" ME as...
  16. Kitty

    Leg tensing up only at night

    I do the same with marmalade, and it seems to work well. I've realised that in my case, high-salt food is often the cause of the pain. There's a possibility I have periodic paralysis, which would explain that link; since sugar always makes my muscles go floppy, it's feasible that it's relieving...
  17. Kitty

    Options for genetic testing

    I tend to agree. I don't think genetic diseases are often found accidentally through WGS; they're found, sometimes after many years, by the right expert recognising the symptoms, and then confirming it through genetic tests. Or at least trying to; in many cases not all the variants concerned are...
  18. Kitty

    Mitochondrial Mass of Naïve T Cells Is Associated with Aerobic Fitness and Energy Expenditure of Active and Inactive Adults, 2022, Alley et al

    I wouldn't describe less than 90 minutes per week of aerobic activity as particularly inactive. Okay, so members of that group clearly aren't long distance runners or cyclists, but you could be doing two or three sessions a week of interval training within that, which will keep you considerably...
  19. Kitty

    What items/documents would you like to send to GPs/primary care physicians if you were doing a mail-out?

    Good point. I find it useful when a link is accompanied by an indication of how long the article is, e.g. "Five-minute read". Sometimes I get drawn into things by picking a short article first, and then if it's decent quality or interesting, I'll look at longer ones.
  20. Kitty

    2022 Brian Hughes on the NICE Guideline and what it means for care of people with ME/CFS

    It was a great talk, I really enjoyed it too. The only thing I have doubts about is the idea of science being able to move on when the current generation of scientists retires. Not only did they train the subsequent generation, but the politics and funding of healthcare are actively pushing...
Back
Top Bottom