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Open New York, USA: Assessment of N-Acetylcysteine as Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (NAC ME/CFS)

Discussion in 'Recruitment into current ME/CFS research studies' started by John Mac, Sep 10, 2020.

  1. John Mac

    John Mac Senior Member (Voting Rights)

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    Sponsor: Weill Medical College of Cornell University
    Collaborator: National Institute of Neurological Disorders and Stroke (NINDS)

    https://www.clinicaltrials.gov/ct2/show/NCT04542161
     
    Last edited by a moderator: Sep 10, 2020
  2. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    As I understand it a number of patients have reported very bad reactions to NAC. In this light one wonders about the ethics of such a trial. I doubt we can expect much benefit considering this has been one of those supplements floating around forever with nothing to show for it.
     
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  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    This was presented at a previous IACFS/ME conference:

     
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  4. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Honestly, this seems like a waste of money to me. We would know by now if NAC had a significant effect on ME symptoms in a significant number of patients.
     
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  5. Rain

    Rain Senior Member (Voting Rights)

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    Exactly. Every time limited resources are spent on things most of us has tried and dismissed already, it feels like a step back, not forward.
     
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  6. Dancer

    Dancer Established Member (Voting Rights)

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    I do think the finding of low glutathione is interesting - I definitely had that. But I tried NAC and also glutathione IV treatments and none of it helped. What is CAUSING the low glutathione? Otherwise it seems like trying to pour into a bucket full of leaks.
     
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  7. Fizzlou

    Fizzlou Established Member

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    For me NAC has had a hugely beneficial effect on the 'wired and tired' insomnia. It was the insomnia that really pushed me to my wits end so I'm positive about it. I have to watch my glutamate levels. My spreadsheet of self experimentation of strategies continues to grow and some things that work for others have a bad effect on me e.g. probiotics and glycine. The same old story with many studies seems to be about 1/3 good responders. A reflection of heterogeneity?
     
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  8. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    Years ago when I had testing done, my glutathione was the only thing that tested out of range. I started taking NAC, however, I did not notice any improvement with my ME. Whether or not my glutathione levels went up at all I don't know as I didn't want to pay to have testing done again.
     
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  9. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    *** Disgusting post warning ***

    I have been taking NAC for years. As an ex-long-term-heavy-smoker my lungs don't clean themselves out very well. NAC makes lung secretions thinner and they can be coughed up more easily than when the secretions are really thick. Without NAC my lungs would be left full of junk that could encourage infection.

    My husband and I got help to stop from the NHS. I asked the stop smoking counsellor if or when my lungs would start to clean themselves out and she said it could take anything from 24 hours to never. Since my lungs still felt "full" two years later I was one of the "never" group. Then I read about NAC and once I started taking it finally the junk in my lungs started to come up.

    If NAC became something that could only be prescribed rather than bought OTC I would be devastated, as well as being far more likely to get chest infections.
     
  10. Rain

    Rain Senior Member (Voting Rights)

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    @Arnie Pye NAC is widely used to break up thick mucus regardless of cause. I am happy to use it for some symptom relief for longer or shorter periods myself, but don’t find it particularly interesting for a complex set of ME-symptoms.
     
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  11. Louie41

    Louie41 Senior Member (Voting Rights)

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    Hmmm---I've taken NAC for a couple of years now and it has ended my "tired but wired" feeling. So
    I've found it extremely useful.
     
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  12. NelliePledge

    NelliePledge Moderator Staff Member

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    I don’t think I’ve ever picked up on NAC being something that helps some with tired but wired insomnia.
    Very interesting and one I will look into.
     
  13. Louie41

    Louie41 Senior Member (Voting Rights)

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    I believe it was looked at in a study cited by @Hip. Sorry, but don't remember the name of the investigator.

    The study referenced by @Tom Kindlon above, by Dr. Shungu et al., is the one that @Hip cited, I'm quite certain.

    There's a discussion in this thread:
    NAC - how best to take it
    @NelliePledge

    ETA: NelliePledge flag
    ETA: confirm Shungu study as the one cited by @Hip.
     
    Last edited: Sep 14, 2020
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  14. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    I hadn't picked that up i.e. "very bad reactions to NAC". I recall that this group demonstrated low levels of "(GSH) glutathione, an antioxidant capacity and redox state marker", i.e. in the brains of people with ME. Glutathione levels, in the brain, can be measured using MRI/MRS; you can't actually measure the levels of very many compounds in the brain - MRI/MRS isn't that sensitive.
    Since glutathione levels have been shown to be low in people with ME, then in principle increasing the levels, and monitoring the effects, seems like a good idea.

    I think this study emphasises the need to deliver a large GWAS study; that way we may have more promising leads to investigate. @Simon M @Michiel Tack
     
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  15. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    If you consider Chris Armstrong's work on amino acids, and glucose, in blood (coincidentally he used the same technique i.e. MRS). Chris found low levels of certain types of amino acids and high levels of glucose. Basically indicating that people with ME utilised these amino acids for energy production i.e. rather than glucose. Fluge and Mella progressed this https://insight.jci.org/articles/view/89376

    So if Glutathione is low then that may be due to use - increased oxidative stress.

    So supplementing with the precursor (which crosses the blood brain barrier?) is a way of investigating what is "CAUSING the low glutathione".
     
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  16. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Assume this was blood glutathione; unfortunately testing the levels of glutathione in the brain isn't readily available (MRI/MRS).
     
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