International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Article in Neurology Today: "An IOM Report Gives a New Name, New Diagnostic Criteria to CFS/ME"

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Dolphin, Mar 20, 2015.

  1. Dolphin

    Dolphin Senior Member

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    Sympathetic article

    Free full text: http://journals.lww.com/neurotodayo...eport_Gives_a_New_Name,_New_Diagnostic.1.aspx

     
    ahimsa, Cheshire, Valentijn and 5 others like this.
  2. Ember

    Ember Senior Member

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    False or misleading:
     
  3. Dolphin

    Dolphin Senior Member

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    My impression of the literature is this is true with regard to symptom studies.
     
  4. duncan

    duncan Senior Member

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    Ember, yes, misleading or flat out wrong data here and there.

    But the tone...the tone struck me the right way. There was a bit of validation in that tone, I thought.

    So much of what has been written has been done so dismissively or begrudgingly or condescendingly.

    I thought this somehow different, and not in a nuanced way - more of an overtly matter of fact, no nonsense voice.
     
    Last edited: Mar 20, 2015
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  5. Ember

    Ember Senior Member

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    No studies have used SEID patients.
     
    oceiv likes this.
  6. Dolphin

    Dolphin Senior Member

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    Ok, I suppose that is literally true. But given SEID didn't exist before this came out, it's clear what they were referring to was ME/CFS.
     
    Valentijn and worldbackwards like this.
  7. Ember

    Ember Senior Member

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    It's misleading when the proposed clinical criteria become the research criteria retroactively.
     
    oceiv likes this.
  8. starlily88

    starlily88 Senior Member

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    Baltimore MD
    Maybe I am missing something but CFS was a one note name - we had fatigue - just like cancer people.............
    SEID - systemic exertion intolerance disease - is one note also. It is post-malaise exertion intolerance.

    ME/CFS is not fatigue as is HIV, MS, Cancer. Cancer could be called Fatigue replicated cell disease.
    I know we have post-exertional malaise but that is like calling MS "muscles sheath breakdown disease"
    or myelin sheath deteriation disease (MSDD).

    Recognized auto-immune diseases are short, easy for public to remember - MS, Lupus, Parkinson's, HIV, etc.

    I'd be happier if it was called Methylation Block or MB. Or Glutathione Depletion or GD. OR swollen lymph nodes
    disease - SLND :jaw-drop:. Just kidding. Short term memory loss or STML :aghhh:
    I think they picked SEID because it is only thing that places like Hopkins can actually quantify.
     
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  9. Dolphin

    Dolphin Senior Member

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    I don't think there is sufficient evidence for the medical profession to think this was a definite aspect of the condition and also something that other people didn't have.
     
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  10. Amaya2014

    Amaya2014 Senior Member

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    Columbus, GA
    Dr. Natelson believes that the new name and straightforward diagnostic criteria will reduce the heterogeneity of diagnosis to some degree. “This will be much easier to use for the practicing physician,” he said.

    Researchers have found that patients previously diagnosed with ME/CFS who did not have any psychiatric comorbidities were more likely to have brain abnormalities than those with such comorbidities. Dr. Natelson's current study, which is being funded by the National Institutes of Health, will conduct triple brain studies on all involved patients: lumbar punctures to assess protein and cell count, MR spectroscopy to study brain chemistry, and neuropsychological testing.

    Good stuff! Thank you @Dolphin
     
    Never Give Up, catly and Dolphin like this.

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