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  1. Kitty

    The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem (2016), Edwards, JC et al

    I'd argue that this is just what we need. At the moment we have no way of reliably separating the people with TB from those with asthma or lung cancer, and as you say, we need to do this in order to make progress. Perceptive physicians could tease out some of the differences between the groups...
  2. Kitty

    Using PCs versus laptops when you're mostly in or on your bed

    My laptop has decent volume anyway, but I also have a pair of Bluetooth headphones so I can listen to music without annoying the neighbours. I guess it comes down to what you describe as loud. To give you an indication, I haven't been to a cinema since the early 1980s because that's when films...
  3. Kitty

    UK company Neuro ProActive

    Yes, me too. @Trish asked some really useful questions. One of the services offered that might be useful to patients is occupational therapy, but in the UK this is usually accessed by self-referral to local authorities. For people who're not working, the main purpose of an OT visit is to be...
  4. Kitty

    Using PCs versus laptops when you're mostly in or on your bed

    I agree, this is an important consideration for some folk—laptop screens are particularly expensive, and make up a biggish chunk of the cost. I just use one because it needs to be portable. I'm away from home on a wildlife trip at the moment, and I sometimes want to be able to view and process...
  5. Kitty

    Using PCs versus laptops when you're mostly in or on your bed

    Some you can, some aren't optimised yet (the new chip hasn't been out all that long). I certainly run Patient Access and MyGP on it—I don't use the main NHS app, so I'm not sure about that one. My mobile banking, credit card account, and credit union savings apps all run fine, as does the...
  6. Kitty

    Using PCs versus laptops when you're mostly in or on your bed

    I enjoy photography, so I have MacBook Pros—cost a fortune, but easily last nine or ten years. I got my first one secondhand in 1995, and I've bought my fourth this year. The 2012 one is still working okay and might well last another year or two, but I happened to have the money to replace it...
  7. Kitty

    Compression Garments

    Sorry, I missed this as I'm away at the moment. These are the ones I have: https://comfizz.com/collections/light-support/products/comfizz-lymphedema-boxers-knee-length-unisex They're starting to sell out of them, unfortunately! They've been on special offer for a long while, so I'm thinking...
  8. Kitty

    Best chopping tool/food prep gadget?

    Tesco often have them too. I sometimes buy their mixed packs of frozen sweet potato and butternut squash chunks to put in curries or stews.
  9. Kitty

    Best chopping tool/food prep gadget?

    Almost all my meals are one-pot dishes that I make in enormous batches and then freeze. Some of my strategies: I've never peeled things like carrots, parsnips, or potatoes, even before I got ill—I just top and tail them, and scrub the muck off with a veg brush. I do my chopping sitting on the...
  10. Kitty

    Glossy tiles in bathroom

    I'd leave the lighting decision till last if you can. Modern LED lighting is extremely flexible, and if you choose your fittings carefully, you can get a whole range of lamps with different colour temperatures and brightnesses. You can't predict exactly how the tiling will look until it's done...
  11. Kitty

    Glossy tiles in bathroom

    I chose bumpy white tiles, the cheapest versions available, in the large wetroom at the last house. The Disabled Facilities Grant paid for two of the walls to be tiles because they'd get wet from the shower, but I had to pay for the other two—hence the price decision! The room was originally...
  12. Kitty

    I'm curious about lab testing for viruses (not COVID) Is this common where you live? If so, when did it happen?

    I think the UK's the same—there are tests for a few important viruses, and people who're ill or at risk might sometimes be tested for more routine bugs, but testing for common viruses in healthy (or relatively healthy) people is almost unheard-of. Probably for good reason, to be honest. If...
  13. Kitty

    Thoughts on the "adrenaline effect"?

    Very much this for me too, though I'm not sure whether it's definitely—or solely—down to ME. (For background: as some of my symptoms don't match ME, I've been behaving as if I have hypokalaemic periodic paralysis for a few weeks to see what happens. I've had a lot more function since then, and...
  14. Kitty

    Seven billion items of pandemic PPE 'not fit for purpose'

    I know someone working in healthcare, whose institution received a large consignment of masks that had to be returned as unsuitable for use. It was because they were attached by ear loops, and FFP3 masks used in their setting needed to have straps that go around the back of the head. Since...
  15. Kitty

    Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS, 2022, Lim Rogers

    Possibly? I find this a really odd idea. It seems to suggest that all you need to do in order to get answers to intractable biomedical problems is shout loud enough. I'm not sure I accept that ME patients have significant problems in engaging in patient activism. Even severely ill people have...
  16. Kitty

    Flat sheets versus fitted sheets

    I've used fitted cotton sheets for decades, bought everywhere from John Lewis to Dunelm to eBay, and I can't honestly say I've had a major problem with any of them. The only slightly annoying one I've had was too deep and so had a rather looser fit on top, but I still used it for ages. I find...
  17. Kitty

    Evaluating case diagnostic criteria for ME/CFS: toward an empirical case definition, 2022, Conroy, Jason et al

    I agree. You don't need to do any activity at all to know that you have PEM, because you feel ill. I'd also replace 'unrefreshing sleep' with 'much more difficulty than usual initiating and maintaining sleep'. There's no mention of the wired feeling, the extreme clumsiness, the inability to...
  18. Kitty

    UK: News from Chronic Illness Inclusion

    Crip was reclaimed by disabled people years and years ago, though—some of my friends often use it in that way.
  19. Kitty

    droopy mouth ?

    I don't know about the facial palsy, but it's worth saying that SIBO can eventually cause vitamin deficiencies, including B12 and folate. Healthy people have bodily stores of B12 that can last several years before deficiency sets in, but if the levels were low to begin with, SIBO could...
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