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  1. Marky

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    Interesting. So it targets mainly the plasma cells with the M-protein? Just curious
  2. Marky

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    I have not concluded that it is, but you have concluded that its not autoimmune. As im saying it does not matter that Rituximab study failed if long lived plasma cell are involved. There is a phase 2 on cyclo that was promising but inconclusive The Ivig trials have alwo been inconclusive...
  3. Marky

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    This thread was split from Open Medicine Foundation (OMF) News I thought we could not conclude autoimmunity is likely out of the picture as long as we dont know how to target long lived plasma cells? I mean b-cells dont really matter at that point if im not mistanken, as the autoimmune plasma...
  4. Marky

    Lightning Process study in Norway - Given Ethics Approval February 2022

    forgot to mention that, he will I dont agree about not emphasizing the problems with subjective questionnaires, because of how lightning process works - it makes the research literally useless, and I don't believe for a second they will include any objective outcomes. There are many more...
  5. Marky

    Rituximab and placebo response

    It varies greatly between ME-patients.. In my first year i would get bad PEM from running, or lifting weights for 30 mins. Last year I got bad PEM from trying to make dinner.
  6. Marky

    Lightning Process study in Norway - Given Ethics Approval February 2022

    Well this aged like a fine wine :banghead: At least it has come to my attention, that this particular regional ethics committee in Norway (REK MIDT), is well known by the rest of the regional committees to allow research they themself never would. Hence, there might be a chance to push a...
  7. Marky

    Lightning Process study in Norway - Given Ethics Approval February 2022

    I agree The main issue with the study is that the "method" explicitly involves asking the participants to ignore symptoms, and pretend they are healthy. OBVIOUSLY THAT WILL RENDER THE QUESTIONNAIRE SCORES MEANINGLESS. Im writing this in caps cause I am simply shocked REK did not comment on...
  8. Marky

    Rituximab and placebo response

    And by the way small things like this, can influence function level questionnaires heavily, if u answer before exerting yourself
  9. Marky

    Rituximab and placebo response

    Exactly. I had the same summer spike as well, and thought to myself - this is probably nothing, so I went out to bike and see what it meant, and i got heavy PEM
  10. Marky

    Rituximab and placebo response

    Well.. Im pretty sure I cant get a placebo with this. I took Rituximab with no placebo also, and my symptoms dont go away momentarily even if I believe in a treatment. Apparantly a lot of ME-patients can though, it puzzles me. Im not sitting on a high horse saying that, just saying I dont get it...
  11. Marky

    Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME, 2020, White et al

    They excluded patients who "had physical contraindications to exercise", so in a paper on ME, they excluded ME-patients. Brilliant! ---------------------------- "Others came to consider their life before CFS/ME an undesirable state, which had contributed to their becoming ill in the first...
  12. Marky

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Yes they have all gone silent in Norway as well, obviously they are having some sort of victimized preperation
  13. Marky

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Also a nice confirmation that none of these Twitter experts actually read what they are commenting on
  14. Marky

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Hahahaha i laughed so hard when I saw that tweet
  15. Marky

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    More important points from Jonathan: "Recent comments by three PACE authors in a published response to critique indicate how little the difficulties of expectation bias are understood. The authors say that they prefer the altered outcome criteria that they introduced post-hoc because they gave...
  16. Marky

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    The science media centre website has now included another testimony, surprisingly not a CBT or GET advocate: https://www.sciencemediacentre.org/expert-reaction-to-nice-draft-guideline-on-diagnosis-and-management-of-me-cfs/ --------------------------- Prof Simon Carding, Group Leader in gut...
  17. Marky

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    My pleasure! Se Thrish`s comment, and heres the list with all the draft documents...
  18. Marky

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    No I agree it could be more clear why they disregard GET, thought the same thing. That being said im so happy to see it disregarded quite clearly earlier in the draft, that I didnt mind much.
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