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Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), 2019, Polo et al.

Discussion in 'BioMedical ME/CFS Research' started by Eagles, Nov 21, 2019.

  1. Eagles

    Eagles Senior Member (Voting Rights)

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    Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

    https://www.tandfonline.com/doi/full/10.1080/21641846.2019.1692770

    Olli Polo, Pia Pesonen & Essi Tuominen

    ABSTRACT

    Background: Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a common medical condition that limits physical and cognitive functions, with no known effective medical treatment.

    Methods: We report on the safety and effectiveness data accumulated in clinical practice when treating ME/CFS with low-dose naltrexone (LDN, 3.0 – 4.5 mg/day). The medical records from 218 patients who received ar diagnosis of ME/CFS and LDN treatment during 2010–2014 were retrospectively analyzed...
     
    sebaaa, Caesar, merylg and 7 others like this.
  2. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Scihub link, https://sci-hub.se/10.1080/21641846.2019.1692770

    Full abstract
    Important to note, I think, that they say
     
    sebaaa, Michelle, wdb and 11 others like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I didn't know that was an acceptable practice within medical research, analysing retrospectively.
     
    inox likes this.
  4. Marky

    Marky Senior Member (Voting Rights)

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    Kinda pointless to draw any conclusions without objective markers for improvement or placebo groups. I mean u cant use the retrospective study for anything..
     
    Hutan, MEMarge, alktipping and 2 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    So, safety is confirmed. Moving on to efficacy in blinded trials?

    Effect seems to be minimal, though. As in it relieves some but doesn't do much to elevate function. Still better than, woah, TAU, which is now CBT-GET. The thing about setting a standard that the lowest possible subjective "improvement" should be treated as wildly significant is the kind of thing that comes back and bite people in the ass.

    The entire BPS worldview around CBT-GET is that it's the best we got because it's the only thing that has been tested to have this minimal effect (nevermind that many other treatments would have a much greater effect, not hard when you need a femtometer-scale measurement). So if we got something that actually has minimal improvement, unlike their crap, that places it above CBT-GET (since it does, you know, nothing) then the whole thing becomes invalidated since its whole reason to exist becomes obsolete.

    Something tells me the goalposts are already oiled and ready to move at a moment's notice.
     
    wdb, alktipping and Simone like this.
  6. Trish

    Trish Moderator Staff Member

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    I agree no conclusions about efficacy can be drawn. I suspect this is more of a prelimary publication to justify a grant bid to carry out a proper double blind study.
     
    sebaaa, MEMarge, alktipping and 4 others like this.
  7. John Mac

    John Mac Senior Member (Voting Rights)

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    This should be sent to a certain group of psychiatrists
     
    Cheshire, MEMarge, alktipping and 8 others like this.
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think that may be optimistic. If I was sent a grant proposal that quoted this as a preliminary study I would have clear reason to turn the grant down on the basis that the applicant had no idea how to do things properly. It may have been produced in the vain hope that it would help defend off label prescribing over a long period. But I had a feeling that Polo was no longer allowed to see ME cases?
     
    sebaaa, Michelle, wdb and 4 others like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    They know exactly what they're doing. They operate out of beliefs, not science.
     
    ukxmrv, alktipping, Sean and 2 others like this.
  10. Milo

    Milo Senior Member (Voting Rights)

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    Retrospective study, medical record review. A hot mess. Who knew that LDN could reduce fevers??? And i would hate to see another clinical trials with prolonged time on the drug, like a year, to see whether the patient is better? All the while, we are still in limbo?

    Please, use objective measurements to assess effectiveness. And could we please assess other drugs?
     
    Michelle likes this.
  11. JES

    JES Senior Member (Voting Rights)

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    This wasn't a trial so they couldn't do any measurements, this is just based on Polo's own observations from seeing a couple of hundred Finnish patients, among which I was. Apparently Polo tried to get a real blinded trial for LDN started several times, but it failed for reasons I don't know. And as Edwards mentioned, Polo's private clinic is closed since 2017. This basically screwed his reputation, so I'm afraid there won't be any more trials coming out of this.
     
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  12. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    MEMarge likes this.
  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  14. LisaG

    LisaG Established Member

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    I tried this recently. It did not work for me at all. I felt even more fatigued and flu-like, and spaced out (emotionally detached).
    Tried a couple of times. Very disappointing.
     
    Michelle and MEMarge like this.
  15. Hip

    Hip Senior Member (Voting Rights)

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    In a forum poll, LDN only resulted in a major improvement in symptoms in 3% of cases, which is pretty low. (Major improvement in this poll is defined as moving up at least one level on the ME/CFS scale of very severe, severe, moderate, mild, remission).

    By contrast, Valcyte led to major improvements in 50% of cases.
     
    sb4, John Mac, ukxmrv and 1 other person like this.
  16. NelliePledge

    NelliePledge Moderator Staff Member

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    Isn’t it more appropriate to simply give numbers rather than turn them into percentages 1 out of 2 gives 50% but one person who reckons they’ve improved is one person.
     
    sebaaa, adambeyoncelowe and Sarah94 like this.
  17. Hip

    Hip Senior Member (Voting Rights)

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    If you prefer it in numbers of people, then out of 35 ME/CFS patients who tried LDN, only one reported a major improvement.
     
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  18. NelliePledge

    NelliePledge Moderator Staff Member

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    And valcyte?
     
    Sarah94 likes this.
  19. Hip

    Hip Senior Member (Voting Rights)

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    Out of 12 ME/CFS patients trying Valcyte, 6 reported a major improvement.
     
    ukxmrv and sb4 like this.

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