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Treatment of the narcoleptiform sleep disorder in chronic fatigue syndrome and fibro

Discussion in 'Other Health News and Research' started by muffin, Aug 11, 2010.

  1. muffin

    muffin Senior Member

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    Treatment of the narcoleptiform sleep disorder in chronic fatigue syndrome and fibromyalgia with sodium oxybate Source: Pain Practitioner, Jan-Feb 2010
    by A Robert Spitzer, MD, Melissa Broadman, DO, MPH
    July 23, 2010

    [Note: to read the full text of this article free, click here. Note Table 5, which provides the constellation of symptoms and findings the researchers used to identify patients generally fitting their description of "Narcoleptiform Syndrome" - "a sleep disorder with many features of narcolepsy."]

    This study investigates the response of the underlying sleep disorder associated with Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM) to treatment. We retrospectively reviewed 118 cases clinically consistent with CFS or FM, treated in a neurology practice.

    Abnormal findings on sleep studies and associated human leukocyte antigen markers, and a clinical pattern suggestive of narcolepsy, are present in a high proportion of patients. [Narcolepsy is a chronic neurological disorder of excessive daytime sleepiness caused by the brains inability to regulate sleep-wake cycles normally, and likely involves multiple factors interacting.]

    When considered appropriate based on the clinical picture and test results, treatment with sodium oxybate was offered to these patients. [Sodium Oxybate (brand name Xyrem) is a potent central nervous system depressant used to prevent episodes of muscle weakness (cataplexy) in narcolepsy patients, though how it works to do this is not known.]
    Sixty percent of patients treated with oxybate experienced significant relief of pain,

    While 75% experienced significant relief of fatigue.

    We postulate that the response to oxybate in CFS and FM suggests a disturbance of sleep similar to narcolepsy. These findings support this novel approach to intervention and further research.

    The inability to distinguish CFS and FM by testing and response to treatment suggests that they may represent variations of the same disorder or may be closely related disorders.

    Source: Pain Practitioner, Jan-Feb 2010;10(1):54-9. PMID: 20629967, by Spitzer AR, Broadman M. Neurology Department, Wayne State University School of Medicine, Detroit, Michigan, USA. [Email: raidl@ieee.org]
     
  2. taniaaust1

    taniaaust1

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    Sth Australia
    Thanks for posting that muffin. Its good to see a CFS study done on something sensible.
     
  3. Otis

    Otis Señor Mumbler

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    Xyrem has great potential and it's been studied extensively in fibro. I think they are through stage III trials. I read in a blog (about.com?) that the FDA is considering approval for fibro. Here's the latest study in fibro patients http://www.forums.aboutmecfs.org/sh...leep-physiology-amp-sleep-related-FM-symptoms

    If fibro approval is made, along with studies like this, CFS patients may be able to get scripts soon as well. The hurdles being a doc willing to prescribe and the good old insurance companies.
     
  4. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    ty muffin

    Wow mufin ty for posting this. I often thought that I had a form of narcolepsy and then suddenly the symptoms switched and I had trouble falling asleep.

    glen
     
  5. Dolphin

    Dolphin Senior Member

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    I read that paper. To me, it wasn't clear they really had CFS. (I could be wrong of course):

    No mention of PEM (or something like it) for example.

    I think I read somewhere this was pricey for a sleep med (thousands/year).
     
  6. Dolphin

    Dolphin Senior Member

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  7. Dolphin

    Dolphin Senior Member

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  8. Otis

    Otis Señor Mumbler

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    Thanks for the review and links Dolphin. My faith in the potential lies mostly with it's promise in fibro at this point.

    I just wanted to add quickly before I sign off that is expensive >= $600/month without insurance.
     
  9. hensue

    hensue Senior Member

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    On the Pro Health message board quite a few have been on the drug xyrem. These were fibromyalgia patients which I know some of them have PEM.
    The ones that posted did not have such good results.
    Then again most people do not post about good results usually bad.
    Some had side effects so bad they stopped and others said you had to wake up in the middle of the night and take another pill.
    I am anxious to see or read some positive results.
    Take care
    Susie
     
  10. Dolphin

    Dolphin Senior Member

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    Here is more info on the cohort:
    and
    and
    This and bit above all makes me wonder do the authors really know what ME/CFS is.
     

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