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  1. adambeyoncelowe
    Post

    UK: REGISTER AS A VULNERABLE PERSON TO GET CORONAVIRUS SUPPORT

    I literally tweeted this earlier today. Great minds! Thankfully, I've found out that because I take a steroid inhaler and an IL-2 inhibitor for...
    Post by: adambeyoncelowe, Mar 27, 2020 in forum: Epidemics (including Covid-19, not Long Covid)
  2. adambeyoncelowe
    Post

    NHS England now lists ME (not CFS) under neurological conditions but puts it in potentially unhelpful category

    Or it could just be that whoever updates the website uses that term over CFS, or considers it best to use the most commonly used (by patients) term?
    Post by: adambeyoncelowe, Mar 25, 2020 in forum: UK clinics and doctors
  3. adambeyoncelowe
    Post

    Cooking with Corona - coping with power cuts

    I've bought one of these too. It looks good.
    Post by: adambeyoncelowe, Mar 23, 2020 in forum: Home adaptations, mobility and personal care
  4. adambeyoncelowe
    Post

    Metabolic dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome not due to anti-mitochondrial antibodies, 2020, Nilsson et al

    Does PBC actually cause PEM? I doubt it.
    Post by: adambeyoncelowe, Mar 21, 2020 in forum: ME/CFS research
  5. adambeyoncelowe
    Post

    Trial By Error: What Now?

    I assumed your post was directed at David! It's a good idea, though. A cognitive test would be really useful, I think.
    Post by: adambeyoncelowe, Mar 20, 2020 in forum: General ME/CFS news
  6. adambeyoncelowe
    Post

    NHS England now lists ME (not CFS) under neurological conditions but puts it in potentially unhelpful category

    There are some excellent nurses, such as Caroline Kingdon, who's very popular with patients. It's all down to training, ultimately. We've seen...
    Post by: adambeyoncelowe, Mar 19, 2020 in forum: UK clinics and doctors
  7. adambeyoncelowe
    Post

    NHS England now lists ME (not CFS) under neurological conditions but puts it in potentially unhelpful category

    I think we all agree with that!
    Post by: adambeyoncelowe, Mar 19, 2020 in forum: UK clinics and doctors
  8. adambeyoncelowe
    Post

    Trial By Error: What Now?

    There is the angle of 'coronavirus could lead to more ME' which might be of interest to some publications.
    Post by: adambeyoncelowe, Mar 19, 2020 in forum: General ME/CFS news
  9. adambeyoncelowe
    Post

    NHS England now lists ME (not CFS) under neurological conditions but puts it in potentially unhelpful category

    I agree. Nurses would be invaluable.
    Post by: adambeyoncelowe, Mar 19, 2020 in forum: UK clinics and doctors
  10. adambeyoncelowe
    Post

    NHS England now lists ME (not CFS) under neurological conditions but puts it in potentially unhelpful category

    I think we have to be aware that we're mixing terminology here. Stages =/= severity. Relapsing-remitting isn't the same thing as mild. In ME we...
    Post by: adambeyoncelowe, Mar 19, 2020 in forum: UK clinics and doctors
  11. adambeyoncelowe
    Post

    NHS England now lists ME (not CFS) under neurological conditions but puts it in potentially unhelpful category

    The other thing to bear in mind is that the MEA has been lobbying the DWP to recognise ME as a fluctuating condition for years. This is important...
    Post by: adambeyoncelowe, Mar 18, 2020 in forum: UK clinics and doctors
  12. adambeyoncelowe
    Post

    NHS England now lists ME (not CFS) under neurological conditions but puts it in potentially unhelpful category

    I read 'intermittent and unpredictable' as 'relapsing-remitting/fluctuating'. Note that they list 'later stages of MS' under 'progressive'...
    Post by: adambeyoncelowe, Mar 18, 2020 in forum: UK clinics and doctors
  13. adambeyoncelowe
    Post

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Ha! This may be true. I've broken a few rules in my time, though.
    Post by: adambeyoncelowe, Mar 18, 2020 in forum: 2021 Cochrane Exercise Therapy Review
  14. adambeyoncelowe
    Post

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Exactly. Engaging is hard work, but also, sometimes, you have to play the (long) game if you want to win.
    Post by: adambeyoncelowe, Mar 18, 2020 in forum: 2021 Cochrane Exercise Therapy Review
  15. adambeyoncelowe
    Post

    UK media articles about Esther Rantzen (TV journalist) self-isolating with daughter who has ME

    I always feel better at night. To prove a point: my temperature has now risen to 36C and I feel much better. Less stiff, fewer twinges, warm...
    Post by: adambeyoncelowe, Mar 17, 2020 in forum: Epidemics (including Covid-19, not Long Covid)
  16. adambeyoncelowe
    Post

    Anyone available for proofreading in English?

    I've never heard 'pem', either. I have heard PENE like penne, although it also means 'penis' in Spanish, so you have to be careful who you say it to.
    Post by: adambeyoncelowe, Mar 17, 2020 in forum: Advocacy Projects and Campaigns
  17. adambeyoncelowe
    Post

    UK media articles about Esther Rantzen (TV journalist) self-isolating with daughter who has ME

    I feel almost recovered several times a year. It only lasts a few hours, tops.
    Post by: adambeyoncelowe, Mar 17, 2020 in forum: Epidemics (including Covid-19, not Long Covid)
  18. adambeyoncelowe
    Post

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    If I have the spoons after NICE, I might apply. We will see. I don't know what the criteria will be.
    Post by: adambeyoncelowe, Mar 17, 2020 in forum: 2021 Cochrane Exercise Therapy Review
  19. adambeyoncelowe
    Post

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    My counter would be that unless you're in the room (or at least the adjacent room), it's very hard to effect change. At least if you're in the...
    Post by: adambeyoncelowe, Mar 17, 2020 in forum: 2021 Cochrane Exercise Therapy Review
  20. adambeyoncelowe
    Post

    UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020

    I'm pretty sure she will be aware. Nina is very thorough.
    Post by: adambeyoncelowe, Mar 14, 2020 in forum: General ME/CFS news
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