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  1. M

    What’s in the pipeline? Ongoing, registered, or planned clinical trials for ME/CFS

    Is there any reasons given as of why LDN trial is suspended?
  2. M

    US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

    At least one doctor in this group will say meditation and mindfulness
  3. M

    US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

    Some in the list just don’t prescribe drugs.
  4. M

    US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

    This one dr i know is all about management plan and CBT aimed at pacing activities, and if the patient crashes, then it’s because the patient deviated from that plan, they didn’t pace properly
  5. M

    US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

    This refers to central sensitization. from first view, it seems to be a mishmash of each one of the physicians in this group. I can recognize who got the MCAS part and who owns the meditation part.
  6. M

    BMJ letter from LongCovid doctors.

    Right. Could have fooled all of us with his knighthood and his ‘successful practice’ of fooling unsuspecting and vulnerable patients
  7. M

    BMJ letter from LongCovid doctors.

    So... doctors who seemingly will are also patients might have a taste of what ‘post-viral medicine’ has to offer: mindfulness, meditation, CBT and ‘It might take a few months to recover’. They may be offered a spot in the specialist ME clinics if in the uk, where they might get briefed on how...
  8. M

    Elevation in histamine and tryptase following exercise in patients with mastocytosis

    Hi Scott, could you please link to the webpage and not the pdf, so we can see date of publication, and the rest of the information ? It also seems that the article is incomplete.
  9. M

    Pain in adolescent chronic fatigue following Epstein-Barr virus infection, 2020, Wyller et al

    Without reading the paper, here is my comment: Take home lessons: pain very bad, very bad pain, we must do something about that. Seemingly EBV infections means pain??? Should they investigate other onsets too? Pain investigation means psych consult. Pain intervention means rehab and CBT
  10. M

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

    I agree with you @cassava7, and it is actually important to map out the specific impacts and co-morbidities associated with COVID such as clotting disorders, cardiac and pulmonary pathologIes and strokes. These seem to have been reported throughout the spring and summer, and only through long...
  11. M

    A request to those involved in ME research to indicate their position on spinal surgery

    Is his response confidential or has it been shared somewhere else?
  12. M

    A request to those involved in ME research to indicate their position on spinal surgery

    Ironic maybe but there is, Science Media Centre.
  13. M

    August 21, 2020 IACFS/ME Virtual Conference

    I attended. I missed the first block due to sleeping in (it was after all only 7 AM on the west coast). There were no major revelations, and because i missed the beginning i am not sure what is embargoed- Due to brain fog i will need to watch again to make sure i didn’t misunderstand any...
  14. M

    August 21, 2020 IACFS/ME Virtual Conference

    Did anybody watch?
  15. M

    CBT for ME that is accepted by the community.

    I cringe when CBT is promoted as part of the ME treatment. Some of our experts in the field will say ‘the good kind of CBT’. What do they mean? And why would everyone with ME need CBT? Adjustment to a sick state? Learning about ME- which involves learning about central sensitization and how...
  16. M

    CDC Treatment Evidence Review - consultation period

    Can they go to content already? I need to know whether they will recommend group therapy, rehab, and mindfulness... the systematic review from Oregon is not going to bring any good i am Afraid. Garbage in, garbage out. There is no evidence.
  17. M

    Pain catastrophizing is associated with the Val66Met polymorphism of the brain-derived neurotrophic factor in fibromyalgia, da Silveira Alves , 2020

    i dare them to write a paper on cancer related pain and calling it catastrophization. They only use catastrophizing for MUS, chronic pain, women related pain and central sensitization.
  18. M

    Precision-based exercise as a new therapeutic option for children and adolescents with haematological malignancies, 2020, Lanfranconi et al

    The last bit of the abstract got to me: Oh really? Because being able to run and climb stairs increases your chances of social inclusion? Is this what they’re after? Social inclusion after cancer?
  19. M

    Neurotransmitter-derived lipidoids (NT-lipidoids) for enhanced brain delivery through intravenous injection (2020) Ma et al.

    This is the layman article and below you will find the accompanying scientific paper. 1) Drug Delivery Nanoparticles Given Neurotransmitter “Passports” to Cross Blood-Brain Barrier Link to article here 2) Scientific paper: Neurotransmitter-derived lipidoids (NT-lipidoids) for enhanced...
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