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FDA Approves Pitolisant for Daytime Sleepiness in Patients with Narcolepsy

Discussion in 'Other health news and research' started by Jaybee00, Aug 16, 2019.

  1. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  2. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Dr Cheney did work on diastolic heart failure in ME. He believed we were protected from needing heart transplants (as happens with systolic heart failure) because we are forced to rest when our heart needs it.

    Also our brains are fragile so revving them up could damage our brains and our hearts. He advised against taking any anti fatigue medicine.

    I agree with this, because solving the fatigue will not help the underlying problems. The most dagerous point with ME is when we feel better as we do to much and get bad PEM.

    I thought I was cured at one point and did too much. Have been unable to walk more than a few steps for the past 30 years.
     
  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Just skim read the article, struggling with the technical terms today, but sleepiness and fatigue are not necessarily the same.

    Sometimes some of us are very sleepy and can sleep excessively, but that is not true for everyone or true all the time for those that it involves.

    Fatigue may mean you feel a need for sleep but does not necessarily mean you will sleep more, it can also be associated with sleeping less.
     
    Samuel, MEMarge and Amw66 like this.
  4. beverlyhills

    beverlyhills Established Member (Voting Rights)

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    91
    Does anyone from Solve/MECFS and OMF read this?

    Get in contact with Harmony Biosciences business development and ask for a donation of product to start a trial, crossover amphetamine crossover placebo.
     
  5. Trish

    Trish Moderator Staff Member

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    I don't understand why you would suggest trialling this medication for ME. Fatigue as I experience it is about muscle fatiguability, not sleepiness. And amphetamines seem more likely to give a false push to do more, leading to bad crashes.
    Can you explain why you think this drug might be useful for ME?
     
  6. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
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    Because it also aids in “improved cognition, as evidenced by increased processing speed and improved mental clarity.” at least in PWS, i.e., less brain fog.
     

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