1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Left out (Norwegian documentary on ME)

Discussion in 'General ME/CFS news' started by Marky, Jan 29, 2020.

  1. Penelope McMillan

    Penelope McMillan Established Member (Voting Rights)

    Messages:
    28
    It is worrying that the "placebo" was not recognised as a treatment.
    Many people with ME report significant relief from saline infusions.
    The study appears to have made no allowance for the treatment effect of the so-called placebo?

    That does not detract from the tremendous integrity, compassion and commitment of the researchers, nor the power of the documentary.
     
    Last edited: Feb 21, 2020
    ukxmrv and Cinders66 like this.
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,237
    Location:
    Norway
    I am glad these researchers are now in the process of another study where a group of ME patients will be wearing an activity tracking device for a period of time without receiving any treatment interventions or placebo.

    I don't think this has been done before? It will be interesting to see if there are large fluctuations, and whether this ought to be taken into account in future clinical trials.
     
    Joh, Marky, NelliePledge and 9 others like this.
  3. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

    Messages:
    584
    Location:
    Adelaide, Australia
    Don't those self-reported benefits only last a very short amount of time though?

    The director mentions in the Youtube comments "[with] placebo responses lasting more than 30 weeks, it's very difficult to suggest that a few saline infusions would have given this long lasting improvement."
     
    Ron, Marky, Michelle and 7 others like this.
  4. andypants

    andypants Senior Member (Voting Rights)

    Messages:
    1,334
    Location:
    Norway
    You get saline with the rtx, too.
     
    Joh, ukxmrv, Kalliope and 3 others like this.
  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,731
    Perhaps the ritux has such (comparatively) bad side-effects it might undo the benefit of saline and/or a placebo.
     
    ukxmrv likes this.
  6. andypants

    andypants Senior Member (Voting Rights)

    Messages:
    1,334
    Location:
    Norway
    Possibly. I didn’t get any side-effects. The saline and the cortisone I got with the rtx helped tremendously in coping with the stress of the treatment (full or half days at the clinic) and especially the long trip home (by plane). But those effects would always come to an abrupt stop a few hours later and my partner would need to carry me to bed and spoon feed me.

    IV saline is lovely, it feels like a glass of cold water on a hot day but for your veins. But it doesn’t last very long.

    Did the placebo group also get cortisone?
     
    Joh, Ron, Sly Saint and 2 others like this.
  7. Sid

    Sid Senior Member (Voting Rights)

    Messages:
    1,054
    IV saline has no long-term effect on the human body. I don't see how it could help produce apparent improvements and even remissions 6 months out.
     
  8. Seven

    Seven Senior Member (Voting Rights)

    Messages:
    186
    That was exactly my issue. IV saline cannot be seen as placebo for ME/CFs when is one of the tools recommended for OI.
    They should of use sugar pills ( say one treatment is IV and the other pill form or saline shots.
     
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Just a thought (came up on another thread https://www.s4me.info/threads/lightning-process-discussion-thread.5809/page-10#post-482503)

    I wonder if the makers of this film might consider doing one on Phil Parker and the Lightning Process, not necessarily only in relation to ME?

    I also found this production company whose founder is Norwegian but now mainly works in the UK.
    (I saw one of their documentaries 'The Mormons are coming' on BBC2 fairly recently).
    https://www.peggypictures.com/about

    I have no idea how these things work in terms of pitching ideas etc so will leave to more media savvy people, hopefully with contacts.
     
    NelliePledge and Sean like this.

Share This Page