1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 15th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Search Results

Search Again
  1. susanna
    Post

    Action for ME GP webinars

    They say that GET can be useful for 'a specific group' of patients, without specifying how such a group might be identified. Even if it has helped...
    Post by: susanna, Jul 15, 2018 in forum: General ME/CFS news
  2. susanna
    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 agree. The scale should be able to show, 'these patients don't get much PEM, but how much activity do they sacrifice for this?
    Post by: susanna, Jan 21, 2018 in forum: ME/CFS research news
  3. susanna
    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

    May be we can avoid the problem of fewer symptoms because excessive activity is avoided, by asking how much a patient can do before they get PEM....
    Post by: susanna, Jan 21, 2018 in forum: ME/CFS research news
  4. susanna
    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

    Thank you, Leonard. Like Trish, I have a big problem with use of the 'fatigue' word especially as a habit is creeping in in various papers...
    Post by: susanna, Jan 21, 2018 in forum: ME/CFS research news
  5. susanna
    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: susanna, Jan 21, 2018 in forum: ME/CFS research news
  6. susanna
    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

    The danger is we start defining PEM as “whatever it is that separates us from every other diseases” rather than focusing on what are the common...
    Post by: susanna, Jan 21, 2018 in forum: ME/CFS research news
  7. susanna
    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

    Yes, Kitty, I agree we need a more expanded list. After all, research is to be based on this.
    Post by: susanna, Jan 21, 2018 in forum: ME/CFS research news
  8. susanna
    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

    As a trigger for PEM we also need to consider adding sensory overload. This can arise from social interaction, sound sight exposure to chemicals...
    Post by: susanna, Jan 19, 2018 in forum: ME/CFS research news
  9. susanna
    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: susanna, Jan 19, 2018 in forum: ME/CFS research news
  10. susanna
    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

    The De Paul questionnaire is inadequate to describe the symptoms of PEM. It fails to capture the extraordinary nature of PEM and misses out on...
    Post by: susanna, Jan 19, 2018 in forum: ME/CFS research news
  11. susanna
    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: susanna, Jan 19, 2018 in forum: ME/CFS research news
  12. susanna
    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: susanna, Jan 19, 2018 in forum: ME/CFS research news
  13. susanna
    Post

    Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

    Jonathan Edwards, you say, 'There was also a suggestion that there is scientific evidence for GET being bad for patients but the reality is that...
    Post by: susanna, Jan 18, 2018 in forum: Advocacy Projects and Campaigns
Showing results 1 to 13 of 13
Search Again