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  1. MSEsperanza

    (Thesis) Cognitive behaviour therapy for chronic fatigue syndrome Long-term follow-up and Internet-based treatment, 2020, Janse

    They are also co-authors of the 6 articles that constitute the thesis. 1st article: Anthonie Janse, Stephanie Nikolaus, Jan F. Wiborg, Marianne Heins, Jos W.M. van der Meer, Gijs Bleijenberg, Marcia Tummers, Jos Twisk, Hans Knoop, Long-term follow-up after cognitive behaviour therapy for...
  2. MSEsperanza

    Lightning Process study in Norway - Given Ethics Approval February 2022

    13 years ago in another Norwegian newspaper .... Google translate: "Not depression. My daughter Jennie and I were very surprised by the debate post "ME: Both body and soul" by Vegard Bruun Wyller, Kirsti Malterud, Bjarte Stubhaug and Lillebeth Larun on November 19."...
  3. MSEsperanza

    Wego Health Awards: An opportunity to recognise people and groups in the community

    https://twitter.com/TomKindlon/status/1264661372195024896 https://www.wegohealth.com/2020/05/21/lifetime-achievement/ see also https://www.s4me.info/threads/me-advocates-groups-you-can-endorse-vote-for-in-the-wegohealth-awards-2019.10241/ and...
  4. MSEsperanza

    S4ME letter to Cochrane re: proposed new Exercise for Chronic Fatigue Syndrome review and patient involvement

    Thank you everyone who have pursued the requests the letter asked for. So the link now is added at a place a bit less easier to ignore, and it says: 'A statement from the Editor in Chief about this review and its planned update is available here...
  5. MSEsperanza

    Lightning Process study in Norway - Given Ethics Approval February 2022

    From Phil Parker's Lightning Process(TM) website on what he claims to be "Research which supports the theories of the Lightning Process": "Dr. Bruun Wyller says: ‘[...] Based upon our findings, we have formulated a theory of sustained arousal in CFS, which seems to correspond quite neatly to...
  6. MSEsperanza

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    Just wanted to drop an older not-yet-posted comment I found in my drafts folder (on David Tovey's answer regarding objective outcomes in his response to Caroline Struthers' complaint) : @Caroline Struthers: "Using only subjective outcomes in unblindable trials is terrible methodology. This is...
  7. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Description now removed/ sentence replaced with "See also this list curated by Hilda Bastian...." Link to the 'Open sheet for additional links related to the Cochrane review on exercise & ME/CFS': https://docs.google.com/spreadsheets/d/1Z6ktpOxGOYna6ApB5P49pCd_V6QMew6eiptwpFCFrH8/edit#gid=0...
  8. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    https://twitter.com/hildabast/status/1263260110509359104 Thank you Hilda, also for the link to the 1st list. I didn't suggest a DIY list, but was thinking you could put on that list all submissions you think don't fit the other list. Actually I like the idea of an open document. It just...
  9. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    https://twitter.com/hildabast/status/1263245268666875904 Apologies for any misunderstanding and thanks for whatever you did with regards to putting a warning flag on the old and current reviews. Still hard to trust anyone at Cochrane until there is transparency. Also, still no answer from...
  10. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Thank you once again Caroline -- I didn't send it and am not sure Hilda will spot everything posted here, so yes, would be great if you could do this.
  11. MSEsperanza

    Lightning Process study in Norway - Given Ethics Approval February 2022

    Maybe the Dagbladet won't publish letters in English? I think it would be good to publish it here on S4ME so anyone who wants to use it could link to the complete text; also if anyone wants to translate it into Norwegian they could add the link to the original so you won't have to authorize a...
  12. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    https://twitter.com/hildabast/status/1262140974995628032 To Hilda Bastian: Hm, isn't the exercise review so bad in part because the Cochrane methodology has its shortcomings that are particularly relevant for assessing the quality of evidence of therapist-delivered treatments, e.g. exercise ...
  13. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Thank you for your persistence in pursuing this and all kinds of related issues, Caroline. I think it could be a bit misleading to quote that statement from the previous Editor-in-Chief. Apparently, he accepted some amendments after the review authors had repeatedly protested and eventually...
  14. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    There are too many good reasons to list them here why some of us have lost any hope that Cochrane could achieve anything good for people with ME. So thank you all who, despite these reasons, and thank you all who, despite struggling with the additional burden that the pandemic means for people...
  15. MSEsperanza

    UK Planned study: Feasibility of investigating VO2, HR, BP, lactic acid and activity of pwME during normal daily activity, 2020/21, Clague-Baker et al

    Ragarding problems with gait / motor fatiguability: https://www.s4me.info/threads/objective-assessment-of-diverse-types-of-ms-related-fatigue-and-fatiguability-lurija-institute.4241/page-2#post-184216
  16. MSEsperanza

    Lightning Process study in Norway - Given Ethics Approval February 2022

    DrPH David Tuller, Senior Fellow in Public Health and Journalism, University of California, Berkeley: "I appealed to Godlee in an open letter of concern in August 2019, signed by 55 scientists, academics, and other experts from Harvard, Columbia, Stanford, University College London, UC...
  17. MSEsperanza

    Lightning Process study in Norway - Given Ethics Approval February 2022

    "an update of the study [...] where these questions were addressed" -- but the underlying issues weren't resolved.
  18. MSEsperanza

    Lightning Process study in Norway - Given Ethics Approval February 2022

    If I understood past forum discussions properly, another way to put it is that a RCT in order to be 'gold standard' not only needs a control group but an adequate control group. In a trial where blinding is not possible, I think that would mean, in addition to applying objective endpoints, that...
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