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  1. DigitalDrifter
    Post

    Circulating leptin levels in patients with [ME], [CFS] or fibromyalgia a systematic review protocol, 2020, Musker et al

    Doesn't say what criteria, so I'm not convinced that all these patients have genuine ME. I think loose criteria leads to problems replicating results.
    Post by: DigitalDrifter, Nov 3, 2020 in forum: ME/CFS research
  2. DigitalDrifter
    Post

    Effect of disease duration in a randomized Phase III trial of rintatolimod, an immune modulator for [ME/CFS], 2020, Mitchell et al

    Does any one know what criteria for ME they are using? They reference Holmes 1988, CDC 1994, and I think the CCC 2003 criteria. I've just read...
    Post by: DigitalDrifter, Oct 30, 2020 in forum: ME/CFS research
  3. DigitalDrifter
    Post

    #MEAction: PACING AND MANAGEMENT GUIDE FOR ME/CFS

    Good except: I think they should leave that bit out, it might give people the impression that ME is psychosomatic.
    Post by: DigitalDrifter, Oct 28, 2020 in forum: General ME/CFS news
  4. DigitalDrifter
    Post

    FITNET-NHS Esther Crawley - 5th protocol out now

    I wish they would stop saying "Specialist Medical Care", it's highly misleading. There is no specialist treatment for ME. It's just a way of...
    Post by: DigitalDrifter, Oct 23, 2020 in forum: Psychosomatic research - ME/CFS and Long Covid
  5. DigitalDrifter
    Post

    What research do you want to see? (study ideas)

    I'd like to see research exclusively using genuine ME patients (those who have an adverse reaction to exercise and exertion). Outcome measures for...
    Post by: DigitalDrifter, Oct 19, 2020 in forum: General Advocacy Discussions
  6. DigitalDrifter
    Post

    New Zealand Video: Exercise and ME/CFS, 2020, Lyn Hodges

    Near the beginning she says exercise improves immune function in non ME patients, do we all agree on this? Is there any evidence for it? At about...
    Post by: DigitalDrifter, Oct 16, 2020 in forum: ME/CFS research news
  7. DigitalDrifter
    Post

    Continuous Education Module: Nursing Management: Chronic fatigue syndrome

    Looks like they're using the Oxford criteria. Not impressed. No mention of harm from exercise.
    Post by: DigitalDrifter, Oct 2, 2020 in forum: Training courses
  8. DigitalDrifter
    Post

    Does your ME feel like your initial infection?

    I never got an initial infection, I had a very gradual onset. Does anyone have reliable stats on this? How many ME patients have gradual onsets?
    Post by: DigitalDrifter, Oct 1, 2020 in forum: General and other signs and symptoms
  9. DigitalDrifter
    Post

    Low-dose Naltrexone articles and experiences

    I tried LDN back in 2015 and it didn't do anything for me.
    Post by: DigitalDrifter, Sep 27, 2020 in forum: Drug and supplement treatments
  10. DigitalDrifter
    Post

    United Kingdom: Sheffield ME & Fibromyalgia Group News

    @18:00 He conflates ME with neurasthenia, without explaining that it would be a misdiagnosis. He should have clarified on that.
    Post by: DigitalDrifter, Sep 26, 2020 in forum: News from organisations
  11. DigitalDrifter
    Post

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I wouldn't say complete trash but the problem I have with it is this part: There's no mention of long term harm or damage which I believe is a...
    Post by: DigitalDrifter, Sep 23, 2020 in forum: Long Covid news
  12. DigitalDrifter
    Post

    Some videos about various topics concerning ME collected by a member

    [MEDIA] Difference between fatigue and PEM.
    Post by: DigitalDrifter, Sep 23, 2020 in forum: General ME/CFS news
  13. DigitalDrifter
    Post

    Duties of a doctor

    Hardly honest when they use diagnosis as code for crazy.
    Post by: DigitalDrifter, Sep 22, 2020 in forum: General Advocacy Discussions
  14. DigitalDrifter
    Post

    Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2020) Stussman, Nath et al.

    Could you elaborate on that, what's the difference? Definitely agree, I think researchers and the medical profession could learn a lot from this.
    Post by: DigitalDrifter, Sep 19, 2020 in forum: ME/CFS research
  15. DigitalDrifter
    Post

    pain and brain

    I'm 100% bed bound, back in 2016 a physio gave me exercises (which I did for fear of being sectioned again). The exercises made me indefinitely...
    Post by: DigitalDrifter, Sep 12, 2020 in forum: Pain and Inflammation
  16. DigitalDrifter
    Post

    New Sleep Poll

    Lack of sleep causes my injuries to get worse both from lack of healing during sleep and over use since I'm awake for longer. I lived in a noisy...
    Post by: DigitalDrifter, Sep 8, 2020 in forum: Sleep Disturbance
  17. DigitalDrifter
    Post

    The use of the labels ME, CFS, ME/CFS

    That doesn't represent my experience with the medical profession what so ever (They at best refuse to see symptoms as consequential and at worst...
    Post by: DigitalDrifter, Sep 7, 2020 in forum: Diagnostic Criteria and Naming Discussions
  18. DigitalDrifter
    Post

    MEAction: Join Our Values and Policy Initiative! September 2019

    Why on earth did they call themselves MEAction when it's so easily confused with ActionForME (who are alleged to support the PACE trial and the...
    Post by: DigitalDrifter, Sep 6, 2020 in forum: Advocacy Projects and Campaigns
  19. DigitalDrifter
    Post

    CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

    Note the focus on fatigue and only lasting a few days. No mention of long term harm that exercise can cause. I've experienced harm from exertion...
    Post by: DigitalDrifter, Sep 5, 2020 in forum: Psychosomatic news - ME/CFS and Long Covid
  20. DigitalDrifter
    Post

    CFS is commonly diagnosed in patients with Ehlers-Danlos syndrome hypermobility type/joint hypermobility syndrome, 2011, Castori et al.

    What do you suggest they get diagnosed with instead of EDS?
    Post by: DigitalDrifter, Aug 30, 2020 in forum: 'Conditions related to ME/CFS' news and research
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