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  1. Alice
    Post

    Managing Chronic Fatigue using Scientific Insights from N-of-1 Studies - 2018 - Dr Suzanne McDonald, Qld Australia

    This study is recruiting at the moment. It is still vague and all the previous comments appear to have been ignored. I've expressed an interest in...
    Post by: Alice, Apr 17, 2019 in forum: ME/CFS research
  2. Alice
    Post

    Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Nelson et al. 2019

    Workwell suggest 2 weeks of rest, no driving to the test.....etc
    Post by: Alice, Mar 22, 2019 in forum: ME/CFS research
  3. Alice
    Post

    Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Nelson et al. 2019

    Post by: Alice, Mar 22, 2019 in forum: ME/CFS research
  4. Alice
    Post

    Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Nelson et al. 2019

    The idea of sitting on a bike pre warm up is pretty abhorent, do they not know that for people with ME/CFS sitting is an aerobic activity.
    Post by: Alice, Mar 22, 2019 in forum: ME/CFS research
  5. Alice
    Post

    Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Nelson et al. 2019

    It is odd that people with POTS were excluded given that orthostatic intolerance is a key symptom of ME/CFS. The familiarization concept is odd...
    Post by: Alice, Mar 22, 2019 in forum: ME/CFS research
  6. Alice
    Post

    Video: "After Unrest"

    Yep, the calcium channelopathy theory appears pretty solid and new research findings by others are all fitting in with the theory. Chemical, food...
    Post by: Alice, Dec 6, 2018 in forum: General ME/CFS news
  7. Alice
    Post

    What is Action for ME's current (March 2018) position on the PACE trial?

    When will Action4ME start working for ME patients? The PACE trial issues are not a lack of consensus issue. A lack of consensus needs at least...
    Post by: Alice, Mar 23, 2018 in forum: General ME/CFS news
  8. Alice
    Post

    What is Action for ME's current (March 2018) position on the PACE trial?

    Post by: Alice, Mar 23, 2018 in forum: General ME/CFS news
  9. Alice
    Post

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    Yes that is my worry. There is some pretty dodgy research that twists biology into a psychosocial pretzel.
    Post by: Alice, Mar 15, 2018 in forum: News from organisations
  10. Alice
    Post

    Do the poll! Are the NIH/CDC going to use the right definition of PEM in all their future research? Deadline 24 January

    Do we really want the post exposure to things that trigger an exacerbation of ME/CFS symptoms to be called post exertional malaise or does this...
    Post by: Alice, Jan 24, 2018 in forum: General ME/CFS news
  11. Alice
    Post

    My feedback on content of CDEs (Fatigue) - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDE Public Review

    I dont find fatigue an effective way of measuring my health other symptoms are much easier to rate and monitor as is my morning restin heart rate
    Post by: Alice, Jan 22, 2018 in forum: General ME/CFS news
  12. Alice
    Post

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    Defining PEM is easy but measuring it subjectively and its frequency can be meaningless and fraught with misinterpretation. The NAM description...
    Post by: Alice, Jan 19, 2018 in forum: ME/CFS research news
  13. Alice
    Post

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    I've found that I can enjoy and feel good after exercise despite the fact that I will suffer PEM later in fact the more I overdo it the more...
    Post by: Alice, Jan 19, 2018 in forum: ME/CFS research news
  14. Alice
    Post

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    I'm a bit confused as teh questionaire didn't ahve NAM which i wouldl have choosen over IOM.
    Post by: Alice, Jan 19, 2018 in forum: ME/CFS research news
  15. Alice
    Post

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    Post by: Alice, Jan 19, 2018 in forum: ME/CFS research news
  16. Alice
    Post

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    A definition can be multi faceted. I see heart rate data as a second tier of information and not the primary definition but for people pacing and...
    Post by: Alice, Jan 19, 2018 in forum: ME/CFS research news
  17. Alice
    Post

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    I like the term exertion as to me it means anything that is not resting and it includes physical and cognitive - the other triggers need to be...
    Post by: Alice, Jan 19, 2018 in forum: ME/CFS research news
  18. Alice
    Post

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    Me too- I get little warning signs now that I am tuned into my body with PEM hitting like a truck on day 3 if I ignore Day 1's warning signs. On...
    Post by: Alice, Jan 19, 2018 in forum: ME/CFS research news
  19. Alice
    Post

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    Don't all patients experience PEM if they over exert and/or are exposed to triggers.
    Post by: Alice, Jan 19, 2018 in forum: ME/CFS research news
  20. Alice
    Post

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    Post by: Alice, Jan 19, 2018 in forum: ME/CFS research news
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