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  1. MSEsperanza

    Watt from MRC defends PACE in letter to Times

    The book fits this thread's topic perfectly... From p. 140:
  2. MSEsperanza

    Dutch journalist asks about pwME's objection to CBT/GET

    Thank you @Grigor -- your blog might be the most apt answer. And thank you @Andy and @adambeyoncelowe for reminding me of @Grigor's blog .
  3. MSEsperanza

    Dutch journalist asks about pwME's objection to CBT/GET

    Would someone who's on twitter please make this dutch journalist aware of... - the S4ME PACE briefing paper: https://www.s4me.info/threads/science-for-me-pace-briefing-document.3140/#post-55894 - Graham's video...
  4. MSEsperanza

    Hope 4 ME & Fibro Northern Ireland annual conference, Monday 17th September 2018

    link to the conference on eventbrite: https://www.eventbrite.co.uk/e/management-of-mecfs-adult-paediatric-first-do-no-harm-tickets-46131336068?aff=ebdssbdestsearch Hope 4 ME & Fibro Northern Ireland's homepage: https://hope4mefibro.org/ ETA: Natalie Boulton, Producer of the award winning...
  5. MSEsperanza

    The Times - Call for review of ‘flawed’ ME research in Lancet letter

    Do we know whether they have been asked yet? @dave30th, did you contact Carmen Scheibenbogen and her team? ( https://me-pedia.org/wiki/Carmen_Scheibenbogen )
  6. MSEsperanza

    The Times - Call for review of ‘flawed’ ME research in Lancet letter

    I would prefer not to have the private docs involved, seconding @Jonathan Edwards' point: btw, never heard of Dr. Pfeiffer - do you have a link, @Inara ?
  7. MSEsperanza

    Europe: EUROMENE

    Thank you both, @Kalliope and @Jonathan Edwards! Such a relief to read this! -- my confidence in Lenny Jason is restored. Very good to know. It's a pity that Derek Pheby is not doing epidemiological studies himself anymore. I just had a quick glance and found his research very promising...
  8. MSEsperanza

    Europe: EUROMENE

    Thanks, @Jonathan Edwards. It was not only the BPS bits that irritated me, but also the seemingly low quality of their papers and scientific appoach. I also don't trust another member's expertise who isn't BPSophil at all https://me-pedia.org/wiki/Olli_Polo. I mean, is EUROMENE really only a...
  9. MSEsperanza

    Europe: EUROMENE

    Doesn't sound good.
  10. MSEsperanza

    Europe: EUROMENE

    This thread has been merged as both discuss Euromene I hesitated to open this thread, but after I had a second glance at one of the EUROMENE members' CV and an article co-authered by another member, I would like to share my readings with you. (I won't comment any further ATM - I thought this...
  11. MSEsperanza

    Hyperintense sensorimotor T1 spin echo MRI is associated with brainstem abnormality in CFS, 2018, Barnden et al

    Then, what do forum members think about Michael VanElzakker's ME research project? https://because.massgeneral.org/campaign/support-myalgic-encephalomyelitis-chronic-fatigue-syndrome-exercise-challenge-study/c168141 And, what do you think, is any of the EUROMENE groups capable of pursuing the...
  12. MSEsperanza

    Government and Insurance companies - establishing the BPS model

    Looking at the BPS approach's omnipresence with regard to sociomedical issues (especially pension scheme and rehab related, also for "organic" illnesses), and searching for any sensible application of an BPS approach in the medical world, I finally came across the WHO's BPS belief system -- it's...
  13. MSEsperanza

    Hyperintense sensorimotor T1 spin echo MRI is associated with brainstem abnormality in CFS, 2018, Barnden et al

    Thank you, @adambeyoncelowe . Sounds really interesting. But what are "EVs"?
  14. MSEsperanza

    Invisible disabilities: perceptions and barriers to reasonable accommodations in the workplace

    Have not read the (paywalled) article nor watched the video, but it would be interesting what kind of workplace adjustments were discussed. In my mild phases I probably would have benefited from two adjustments: part-time employment, and the possibility (and acceptance) of lying down during...
  15. MSEsperanza

    The MEpedia page on Myalgic Encephalomyelitis

    I agree with almost every point above, @Robert 1973 . I think we should be cautios with the term "measurable" in your last point, though: Aren't these studies based on subjective measures? And could also be interpreted as (wrong/unhelpful) "illness beliefs" or exaggerated perceptions? I think...
  16. MSEsperanza

    The MEpedia page on Myalgic Encephalomyelitis

    Unfortunately, in Germany, in most cases whether you get an "F" or a "G"-(or other "somatic") ICD-Code diagnosis is extremely relevant for doctors to assess your grade of suffering and disabilities. Actually, for any relevant medical, especially sociomedical decision, it matters whether you are...
  17. MSEsperanza

    Discussion - Does ME involve brain inflammation?

    Thank you, @Jonathan Edwards. Once again, your answers are very helpful. And once again, I am too slow to ask further, more specified questions right now. I will come back to some points maybe in related threads. Only two points for now (even though they might be more relevant for the thread...
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