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Low-dose naltrexone as a treatment for chronic fatigue syndrome: Bolton, Chapman, Van Marwijk Jan 2020

Discussion in 'BioMedical ME/CFS News' started by Sly Saint, Jan 7, 2020.

  1. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Its use in other conditions (MS, FM etc) is still relatively recent, so I'm not that surprised. Besides, given there is no coherent ME/CFS *treatment* service anywhere, and pain management often vearing towards the biopsychosocial, who is going to organise trials?
     
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  2. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I don't like how LDN is currently being hyped without there being any reliable evidence for its use.

     
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  3. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Quite honestly, I don’t consider this hype:

    seems like a pretty measured comment to me. Please note that if you want to wait for a RCT study on LDN to be funded, conducted, have data analyzed and published, please be prepared to wait at least 5 years.
     
  4. Trish

    Trish Moderator Staff Member

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    Trouble is, we have anecdotal reports and case studies for all sorts of things appearing helpful in ME, including such crap as LP and all sorts of nutriceuticals and diets. Until we have double blind clinical trials I don't think ME organisations should be spreading the word that LDN helps some people any more than that LP helps some people.
     
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  5. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I have no real experience with this, but I suspect a small RCT would take more like 3 years instead of 5.

    Edit: there's also an ongoing RCT on LDN in ME/CFS by Yared Younger, it started in 2016 but has been temporary suspended.

    https://clinicaltrials.gov/ct2/show/NCT02965768
     
    Last edited: Jan 9, 2020
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  6. LorsP

    LorsP Established Member

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    Here’s one of the most recent articles published on the potential action of LDN in ME/CFS..

    https://www.frontiersin.org/articles/10.3389/fimmu.2019.02545/full

    I think Jarred Younger had also discovered that one Naltrexone monomer seemed to be more effective than the other and caused less side effects, obviously requiring more investigation.
     
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  7. beverlyhills

    beverlyhills Established Member (Voting Rights)

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    Almost everyone discontinues LDN and its efficacy rates are miserable. They would know that if they did a chart review.

    It works in fibromyalgia because when you come off it your opiate receptors are more amenable to endogenous opiates - too short a half life.
     
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  8. JES

    JES Senior Member (Voting Rights)

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    According to the recent paper of Polo et al., 73% reported improvement. How much of this is placebo we don't know, but the patients in Finland didn't in general discontinue the drug. Tolerance was good and at least the subjects perceived that LDN offered them some benefits.
     
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  9. Amw66

    Amw66 Senior Member (Voting Rights)

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    I know 2 people who tried it, worked for one - has improved function greatly.
    Didn't work for other.
     
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  10. Marky

    Marky Senior Member (Voting Rights)

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    To be honest i cant imagine this drug ever will have any effect on objective markers. ME-patients, as other severely ill patients, are likely to report improvement for a number of reasons (placebo, relationship with investigator, self-denial, hope, mood etc). If ur gonna do a case report at least have objective endpoints its not that much work
     
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  11. beverlyhills

    beverlyhills Established Member (Voting Rights)

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    This is what I was looking for, thank you for keeping me in check.

    That is not the selection problem -

    Cohort is mostly self-referred to a clinic only known for LDN.

    Insomnia would increase alertness / vigilance scores without providing actual improvement, which is why the 6 point scale was used, and none of the other dimensions would reach significance.

    I do not fault the guy for losing his license to practice privately, but he has got a bone to pick for sure. He is essentially saying the drug provides improvement in 95% of subjects.
     
    Last edited: Jan 15, 2020
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  12. beverlyhills

    beverlyhills Established Member (Voting Rights)

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    The author has a financial interest in its success - a practice prescribing LDN is extremely profitable especially if you have a partnership with a compounding pharmacy. Even though he lost his license he still has a massive patient base. He really should move his practice across a land border.
     
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  13. Sisyphus

    Sisyphus Senior Member (Voting Rights)

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    I can think of one, with qualifications and based on N=1: It helps one sleep. That probably requires taking it intermittently. But anything which is mild enough to reasonably consider for sleep (i.e. not Ambien) quits working or creates a tolerance after a handful of days. But considering how the severe sleep problems most of us have, my vote is to keep it around for that purpose alone. It’s long off patent and would be cheap as a generic.
     
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  14. Lucibee

    Lucibee Senior Member (Voting Rights)

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