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  1. Melanie
    Post

    'Denialism: what drives people to reject the truth' by Keith Kahn-Harris

    I am not at all disturbed about what he wrote. Not at all. None. He is allowed his disease experience and he doesn't have to frame his disease...
    Post by: Melanie, Aug 5, 2018 in forum: Psychosomatic news - ME/CFS and Long Covid
  2. Melanie
    Post

    Coping with hot weather

    Lots of cold water from the fridge and a tiny bit of gatorade in each big glass.
    Post by: Melanie, Aug 5, 2018 in forum: Home adaptations, mobility and personal care
  3. Melanie
    Post

    'Denialism: what drives people to reject the truth' by Keith Kahn-Harris

    Found where Michael Sharpe likened ME/CFS patients to climate change deniers.
    Post by: Melanie, Aug 4, 2018 in forum: Psychosomatic news - ME/CFS and Long Covid
  4. Melanie
    Thread

    'Denialism: what drives people to reject the truth' by Keith Kahn-Harris

    Michael Sharpe Tweeted this out. Well, the professor doesn't mention PACE trial deniers, but we all know what he is really up to. :sneaky:...
    Thread by: Melanie, Aug 4, 2018, 45 replies, in forum: Psychosomatic news - ME/CFS and Long Covid
  5. Melanie
    Post

    Don Staines and Griffith

    I don't even believe they have a biomarker. Most researchers in the US have remained pretty quiet although I do remember someone in the research...
    Post by: Melanie, Aug 3, 2018 in forum: ME/CFS research
  6. Melanie
    Post

    Is PEM a crash? Is a crash PEM? Semantically distinct? Or distinct phenomena?

    I don't crash anymore but it has happened on several occasions about 10 years ago during a period of about 5 years when I was in bed a lot but not...
    Post by: Melanie, Aug 3, 2018 in forum: Post-Exertional malaise and fatigue
  7. Melanie
    Post

    book:Understanding Severe ME - Essential Guide for Family & Friends

    I checked the UK site and I do not recognize any of the reviewer names. The US site has no reviews. Reading the author's statements as being a...
    Post by: Melanie, Aug 2, 2018 in forum: General ME/CFS news
  8. Melanie
    Post

    #MEAction - CDC revises its information on ME - by Jaime S

    It messed me up. Weight gain, temperament, breakouts, and there are a lot of conflicts with other drugs. However, my BP was 80/50 and just sat...
    Post by: Melanie, Aug 1, 2018 in forum: General ME/CFS news
  9. Melanie
    Post

    BBC Radio Northampton phone-in with Charles Shepherd

    Comment by Richard Senior in 2006 "Not, sadly, the first." See the Editor’s note: The original version of this story stated that the UK case was...
    Post by: Melanie, Aug 1, 2018 in forum: General ME/CFS news
  10. Melanie
    Post

    BBC Radio Northampton phone-in with Charles Shepherd

    There is a man who spoke up in the comment section in one of the papers that his wife also died of ME. I will see if I can find it.
    Post by: Melanie, Aug 1, 2018 in forum: General ME/CFS news
  11. Melanie
    Post

    Chronic Illness Inclusion Project survey

    It took me a while to take it but I just took breaks and lied down to rest. I am cognitively spent today.
    Post by: Melanie, Jul 31, 2018 in forum: Advocacy Projects and Campaigns
  12. Melanie
    Post

    Solve ME/CFS Initiative - Editorial: PEM. It's time to Retire the Term

    Also, one last thing. If we change PEM now, how do we get EVERYONE IN THE WORLD to adopt it especially without the bio evidence we need. We have...
    Post by: Melanie, Jul 31, 2018 in forum: General ME/CFS news
  13. Melanie
    Post

    Solve ME/CFS Initiative - Editorial: PEM. It's time to Retire the Term

    I think we go into the disease further but your experience explains what you are saying, a constant state of PEM.
    Post by: Melanie, Jul 30, 2018 in forum: General ME/CFS news
  14. Melanie
    Post

    Solve ME/CFS Initiative - Editorial: PEM. It's time to Retire the Term

    I think of a crash as what happens on an ER table, a patient begins to crash. The crash can subside but then the patient can be driven into the...
    Post by: Melanie, Jul 30, 2018 in forum: General ME/CFS news
  15. Melanie
    Post

    Solve ME/CFS Initiative - Editorial: PEM. It's time to Retire the Term

    The crash was much more severe, that is for sure. I worked for 20 years with ME/CFS and then when I began crashing I eventually became disabled....
    Post by: Melanie, Jul 30, 2018 in forum: General ME/CFS news
  16. Melanie
    Post

    Solve ME/CFS Initiative - Editorial: PEM. It's time to Retire the Term

    I think this is the most correct definition. I did crash for about 12 years and had PEM or PERelapse for about 20 years before that. I don't crash...
    Post by: Melanie, Jul 30, 2018 in forum: General ME/CFS news
  17. Melanie
    Post

    Solve ME/CFS Initiative - Editorial: PEM. It's time to Retire the Term

    I didn't crash for 20 years and even though I did crash for about 12 years after that I don't crash anymore. The crash is something more severe...
    Post by: Melanie, Jul 30, 2018 in forum: General ME/CFS news
  18. Melanie
    Post

    ICD-11 Fibromyalgia - MG30.01 Chronic widespread pain

    That is true and that is where common sense needs to come in. Yes, it is unlikely that you acquired two seperate conditions in one day. Key is...
    Post by: Melanie, Jul 30, 2018 in forum: Disease coding
  19. Melanie
    Post

    ICD-11 Fibromyalgia - MG30.01 Chronic widespread pain

    Also, I have heard of people's doctors not checking their D levels and diagnosing them with Fibro. They eventually had their D checked by another...
    Post by: Melanie, Jul 30, 2018 in forum: Disease coding
  20. Melanie
    Post

    OMF: Chiara Ferragni offering to donate to good causes

    lol No, it isn't you. I read your post here but I wrote an e-mail instead. Sorry. I am confused too. : ) I should have written: I saw your POST...
    Post by: Melanie, Jul 30, 2018 in forum: General ME/CFS news
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