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  1. Saz94

    How to explain the 'fatigue' of ME/CFS to non-sufferers - comparisons they could understand

    Yes, maybe we should create a new word and define it. I vote for "frobbadacious". PS: oh dear, now I have the "supercalifragilisticexpialidocious" song in my head!
  2. Saz94

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    Sounds good. I'm sorry if my post came across as aggressive? I just meant it as throwing ideas out there. Am not good at tone in writing - I'm autistic so just speak directly and sometimes this comes across as rude? Sorry if so. Too much brain fog to think how to do differently. Only trying to...
  3. Saz94

    How to explain the 'fatigue' of ME/CFS to non-sufferers - comparisons they could understand

    Also I disagree wrt the 50% thing. Plenty of people with "mild" ME have a lower reduction in functioning than that. Still a reduction which affects them significantly, for sure. But we can't wait until they drop to 50% to diagnose them with ME.
  4. Saz94

    How to explain the 'fatigue' of ME/CFS to non-sufferers - comparisons they could understand

    I'm not trying to suggest that people with "mild" ME aren't sick. I had "mild" ME at one point myself. "Mild" isn't really an appropriate term for it, but it's the one that's generally used. We do need to be able to say that some are more severely affected than others - and to recognise that the...
  5. Saz94

    How to explain the 'fatigue' of ME/CFS to non-sufferers - comparisons they could understand

    Except that, whatever level of battery charge your phone has, it does all things normally until it runs out of battery. Well, my phone exhibits certain symptoms when it gets down to 5%, but apart from that it can perform all functions normally. That might be how a person with "mild" ME feels...
  6. Saz94

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    @Andy I have already seen on Facebook somebody saying that they won't take part if it doesn't use ICC criteria. I'm not sure what criteria it is using? Please be aware of the small number of ME patients that are very active online and have extreme views about ME. I wouldn't be surprised if...
  7. Saz94

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    If you work with the SMC to publicise this then many ME Patients will get suspicious and refuse to participate. Any perceived connection with psychological research, at all, will make people think it's a conspiracy to say that it's psychological.
  8. Saz94

    'Women have been woefully neglected': does medical science have a gender problem? Dec. 18, 2019, Nicola Slawson, The Guardian

    @Jonathan Edwards https://www.bbc.com/future/article/20180523-how-gender-bias-affects-your-healthcare https://psmag.com/social-justice/is-medicines-gender-bias-killing-young-women https://www.salon.com/2018/12/14/new-research-reveals-how-sexism-in-healthcare-can-literally-kill-women/...
  9. Saz94

    Why is ME/CFS so neglected?

    I think the biggest ones from that list are 2 5 6 7 8 9 10 11.
  10. Saz94

    Silent clock

    I used to have a non-ticking clock, but it made a faint whirring noise.
  11. Saz94

    Silent clock

    I don't think she wants an alarm. She just wants to be able to check the time when she wakes up, and for the time to be displayed very dimly. A smartphone screen is too big and bright for that. I'm the same, if I checked the time on my phone when I woke up then I'd never go back to sleep.
  12. Saz94

    Silent clock

    I have one which I think meets your requirements. Mine is the 'Lumie Bodyclock'. It has special features which you don't require (it can function as a lamp, which can be set to slowly light up in the morning), but you *can* set it so that it only displays the time when you press a button. On...
  13. Saz94

    BBC Radio 4: The Misinformation Virus

    Same with fake facts about a lot of topics, not just science. E.g. someone being reported as saying something that they didn't actually say. Spreads very easily. And people/organisations can too easily pretend to be authoritative sources of information when they really aren't. I do love and...
  14. Saz94

    Reflections on advocacy

    Why did the parents not believe that their child could get it too?
  15. Saz94

    CAN LINGUISTIC ANALYSIS BE USED TO IDENTIFY WHETHER ADOLESCENTS WITH A CHRONIC ILLNESS ARE DEPRESSED? - Jones, Loades, Crawley et al Dec 15 2019

    I have read Freud. Unfortunately for me. (Required reading during my English Lit course at university. Ugh.) Don't remember that part though. All I remember is that if you have a dream about losing a body part, it means you're jealous that you don't have a penis. Yeah, that's definitely what...
  16. Saz94

    ..Understanding the Role of Psychological Processes in Disease Development, Maintenance, and Treatment: The 3P-Disease Model, 2019, Wright et al

    Health psychology can be useful @Trish @duncan , didn't the Journal of Health Psychology publish some stuff criticising PACE? I think @Jonathan Edwards had a piece published there about the flaws in PACE? Or am I misremembering?
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