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  1. ukxmrv
    Post

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    At the last Judicial Review NICE lawyerded up and paid for a QC and all. There was quite a feeling of bias in the court room I thought with the...
    Post by: ukxmrv, Mar 2, 2021 at 11:40 AM in forum: Information for NICE guidelines
  2. ukxmrv
    Post

    What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.

    Every now and then the sheets on my side of the bed turn blue. Bottom sheet worse than top sheet and it's roughly in the shape of my body....
    Post by: ukxmrv, Feb 22, 2021 in forum: Other Symptoms
  3. ukxmrv
    Post

    Preprint: Physical phenotype of blood cells is altered in COVID-19, Kubankova et al, 2021

    and hopefully finding some new treatments for old ideas. When I met Dr Simpson (he came to see some of the UK groups) the only idea he had was...
    Post by: ukxmrv, Feb 17, 2021 in forum: Epidemics (including Covid-19)
  4. ukxmrv
    Post

    What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.

    It would have been useful in the past for my medical records to include that when I have an infection my body temperature can drop and stay there...
    Post by: ukxmrv, Feb 17, 2021 in forum: Other Symptoms
  5. ukxmrv
    Post

    Anyone recommend an ultralightweight hoover?

    Our solution was a surprise and shows how individual it is. It's not ideal but far better than the alternatives I tried. It's a Shark upright...
    Post by: ukxmrv, Feb 12, 2021 in forum: Lifestyle Management
  6. ukxmrv
    Post

    Paul Garner on Long Covid and ME/CFS. BMJ articles.

    There have been discussions on ME groups in the past (thinking of the old Experimental Yahoo group) on the "Locations effect". The Caribbean from...
    Post by: ukxmrv, Jan 29, 2021 in forum: Epidemics (including Covid-19)
  7. ukxmrv
    Post

    Paul Garner on Long Covid and ME/CFS. BMJ articles.

    PG (BTW) looked pretty crap in the Zoom call. He had the exhausted, can't move my face properly look.
    Post by: ukxmrv, Jan 28, 2021 in forum: Epidemics (including Covid-19)
  8. ukxmrv
    Post

    Paul Garner on Long Covid and ME/CFS. BMJ articles.

    It certainly discounts the deconditioning theory and the need for post viral people to go from sedentary to active through graded exercise as...
    Post by: ukxmrv, Jan 27, 2021 in forum: Epidemics (including Covid-19)
  9. ukxmrv
    Post

    Paul Garner on Long Covid and ME/CFS. BMJ articles.

    We have no real way of telling if PG has recovered or if he is merely under the influence of the L.P. brainwashing - or both. I have a family...
    Post by: ukxmrv, Jan 27, 2021 in forum: Epidemics (including Covid-19)
  10. ukxmrv
    Post

    Dorsal root ganglia: fibromyalgia pain factory?, 2021, Martinez-Lavin

    By some sort of magic?
    Post by: ukxmrv, Jan 8, 2021 in forum: Fibromyalgia and Connective Tissue Disorders
  11. ukxmrv
    Post

    ME/CFS: Organic Disease or Psychosomatic Illness? A Re-Examination of the Royal Free Epidemic of 1955, Underhill & Baillod, 2020

    I think from memory Rosemary Underhill was at the Royal Free during the outbreak?
    Post by: ukxmrv, Dec 26, 2020 in forum: BioMedical ME/CFS News
  12. ukxmrv
    Post

    Science for ME submission to the NICE draft ME/CFS guideline consultation, December 2020

    Thank you. Fantastic job!
    Post by: ukxmrv, Dec 24, 2020 in forum: Information for NICE guidelines
  13. ukxmrv
    Post

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Also write in your response that you are unable to comment on all the parts you would like to due to the time constraints imposed on you by the...
    Post by: ukxmrv, Dec 20, 2020 in forum: Information for NICE guidelines
  14. ukxmrv
    Post

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    I think in a way you are qualifying what I was trying to say and it really helps me to have this interaction to sort it out in my head "I’m not...
    Post by: ukxmrv, Dec 17, 2020 in forum: Information for NICE guidelines
  15. ukxmrv
    Post

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    It's taken me a while to get my head around the Draft Guideline and I'm too late to contribute here sorry. Thank you to everyone who has worked on...
    Post by: ukxmrv, Dec 17, 2020 in forum: Information for NICE guidelines
  16. ukxmrv
    Post

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Any ideas why the Guideline doesn't specifically use the word PACING in any of the activity sections?
    Post by: ukxmrv, Dec 10, 2020 in forum: Information for NICE guidelines
  17. ukxmrv
    Post

    COVID-19 vaccine: UK regulators warn people with history of 'significant' allergic reactions not to have Pfizer/BioNTech jab

    If this was the "usual" problem with every vaccine (radio said 1/1 million) then I don't think we would be seeing it on 2 NHS workers on Day 1....
    Post by: ukxmrv, Dec 9, 2020 in forum: Epidemics (including Covid-19)
  18. ukxmrv
    Post

    Possibility of ME or PVFS after COVID-19, Long Covid

    There was a radio doctor commenting on the vaccine who said that if someone already had the virus in their nasal area or picked up the virus in...
    Post by: ukxmrv, Dec 7, 2020 in forum: Epidemics (including Covid-19)
  19. ukxmrv
    Post

    Fibromyalgia screening in patients with unexplained chronic fatigue, 2020, Aakre

    It's those bloody women again and their problems before and after menopause. Women's troubles.
    Post by: ukxmrv, Nov 6, 2020 in forum: Fibromyalgia and Connective Tissue Disorders
  20. ukxmrv
    Post

    Symptoms of Covid-19

    Sheila Bastien...
    Post by: ukxmrv, Oct 10, 2020 in forum: Epidemics (including Covid-19)
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