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  1. M

    Transient receptor potential melastatin 2 channels are overexpressed in myalgic encephalomyelitis/chronic fatigue syndrome patients, 2019, Balinas

    Another small study. 10 PwME and 10 HC.
  2. M

    UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

    As Carol Monaghan said in Westminster, PACE is likely to be “one of the greatest medical scandals of the 21st century”
  3. M

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    Thanks @Amw66. Starts about 2.30
  4. M

    NICE ME/CFS draft guideline - publication dates and delays 2020

    I meant a year from now. (sorry if not clear) Still no signs of any warnings about harms, or letters to clinics saying there should be agreement between patients (or parents if it is a child) about any "treatments" to be undertaken, as per current GDL.
  5. M

    NICE ME/CFS draft guideline - publication dates and delays 2020

    So, another year of PwME likely to be harmed by current approaches and the ongoing stigma and disbelief.
  6. M

    UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

    Another advantage will be that without the BPS slant there won't be time, effort or money wasted on pointless questionnnaires like the Chalder FQ etc.
  7. M

    A Trial of ME - Elizabeth's Story. #MEAction article, November 2019

    Could this be the paper? https://www.ncbi.nlm.nih.gov/pubmed/17014748 Hazel O'Dowd, Philip Gladwell...
  8. M

    UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

    Well done. Hope the rest of the day goes well.
  9. M

    Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique -Antcliff, Keenan et al Nov 2019

    Can't wait to read this......NOT :banghead::banghead::banghead:
  10. M

    Podcast: CBT for Chronic Fatigue Syndrome: Dr Lucy Maddox, Trudie Chalder

    They are confusing "really want to get better/be well again" with "want to change"
  11. M

    Still to open How to make patients who aren't engaged in the patient community aware of studies recruiting?

    What about linking up with @Gary Burgess? He is a news reporter (from Channel islands), who got ME a few years ago, and did a couple of radio programs, as well as regular podcasts in conjunction with the ME Association.
  12. M

    University of Liverpool survey: 'Emotional Distress in Chronic Fatigue Syndrome', 2019

    He's going to regret altering the age group @Trish.
  13. M

    UK: MRC and NIHR announce ME/CFS workshop, November 2019 & ME/CFS Biomedical Partnership FAQ

    I think it is a little optimistic to think that most GPs will have much idea about this! "We may also ask people if they are willing to provide us access to their electronic health record, with personal clinical information kept by their GPs. This would help us to get a more detailed...
  14. M

    University of Liverpool survey: 'Emotional Distress in Chronic Fatigue Syndrome', 2019

    An excellent letter @Trish. Would it be worth sending to NICE? It is a great summary of the situation PwME face.
  15. M

    The ME Association's continued support of the Sussex ME Society

    Definitely does not have ME now!!
  16. M

    Video: Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue, Dr Lucinda Bateman, 2019

    Probably, if your feet are on the floor!
  17. M

    Metro UK: “You Don’t Look Sick” Weekly Series

    Rather critical error in early paragraph: "PoTS is caused by an abnormal response to the autonomic nervous system, which means blood is not pulled downwards when you sit or stand up and there is a drop in blood supply to the heart and the brain." Otherwise not bad for the press.
  18. M

    UK: Document: MEDICALLY UNEXPLAINED SYMPTOMS (MUS) IN CHILDREN AND YOUNG PEOPLE, 2018

    Sickening.
  19. M

    HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

    @Caroline Struthers, have you seen this?
  20. M

    HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

    Full report: https://www.hra.nhs.uk/about-us/governance/feedback-raising-concerns/report-publications-review-jointly-commissioned-health-research-authority-and-university-bristol/
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