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Open A Trial of Solriamfetol in the Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Joel L Young, 2020

Discussion in 'Recruitment into current ME/CFS research studies' started by John Mac, Nov 9, 2020.

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  1. John Mac

    John Mac Senior Member (Voting Rights)

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    https://www.clinicaltrials.gov/ct2/show/NCT04622293


    https://thejewishnews.com/2020/10/07/new-hope-for-chronic-fatigue-sufferers/
     
    John Mac, Nov 9, 2020
    #1
    cfsandmore, Milo, andypants and 5 others like this.
  2. Trish

    Trish Moderator Staff Member

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    Why would it be appropriate to treat pwME with a stimulant used to treat excessive daytime sleepiness? I see from drug information that it
    "increases systolic blood pressure, diastolic blood pressure, and heart rate in a dose dependent fashion."

    I suspect the outcome will be a false feeling of more energy followed by a crash.
     
    Trish, Nov 9, 2020
    #2
    cfsandmore, Samuel, JemPD and 20 others like this.
  3. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Self reported outcome measures.

    IOM selection criteria.

    Solriamfetol is a norepinephrine–dopamine reuptake inhibitor (NDRI).
    It's an amphetamine derivative, so I don't hold out much hope.
     
    Andy, Nov 9, 2020
    #3
    cfsandmore, Tia, TigerLilea and 10 others like this.
  4. Trish

    Trish Moderator Staff Member

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    From the website linked in the first post:

    The case of 'Jane' described in the article sounds like someone with depression, possibly not ME.
     
    Trish, Nov 9, 2020
    #4
    Perrier, James Morris-Lent, alktipping and 5 others like this.
  5. Trish

    Trish Moderator Staff Member

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    Trish, Nov 9, 2020
    #5
    cfsandmore, alktipping, Hutan and 4 others like this.
  6. Mij

    Mij Senior Member (Voting Rights)

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    The term CFS will continue to haunt us forever when it comes to these studies. I'm pretty sure this medication will keep us up all night :emoji_rolling_eyes:
     
    Mij, Nov 9, 2020
    #6
    Possibly James May, cfsandmore, TigerLilea and 9 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Nov 9, 2020
    #7
    alktipping, Hutan, Caesar and 4 others like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    I prefer medical researchers who understand the difference between somnolence and fatigue, let alone that fatigue is an invalid definition of ME.

    Now if only the differences had not been purposely distorted to the point where most medical professionals seemingly swing back and forth between understanding or not understanding the differences depending entirely on context and biases like it's a damn belief system. If only.
     
    rvallee, Nov 9, 2020
    #8
    JemPD, Perrier, Peter Trewhitt and 5 others like this.
  9. oldtimer

    oldtimer Senior Member (Voting Rights)

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    This is exactly my experience with 5 mg of dexamphetamine (family member's ADD medication) taken quite often over ten years or so. The alternative medicine doctor I was seeing in the 1990s would have been happy to prescribe it too.

    I was able to get long periods of physically demanding outdoor work done with no effort, but of course paid for it afterwards. Another downside was that I ignored joint and muscle pain and ended up with injuries.

    The last time I took it the immediate effect was the exact opposite: severe lack of energy and spaced-out feeling. That really frightened me off it for good.
     
    Last edited: Nov 9, 2020
    oldtimer, Nov 9, 2020
    #9
    cfsandmore, Tia, Peter Trewhitt and 3 others like this.
  10. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Why not? I have daytime fatigue and would like to not have it.

    However, I would prefer to see a trial of pitolisant (Wakix) which works by a completely different mechanism. Wakix is very expensive in the USA, but not as expensive in Europe.

    In general I support all non psychological clinical trials—nothing ventured, nothing gained.
     
    Jaybee00, Nov 10, 2020
    #10

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