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Unger et al: CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education

Discussion in 'Latest ME/CFS Research' started by Kati, Dec 29, 2016.

  1. Kati

    Kati Patient in training

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    CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education

    Elizabeth R. Unger, PhD, MD1; Jin-Mann Sally Lin, PhD1; Dana J. Brimmer, PhD1; Charles W. Lapp, MD2; Anthony L. Komaroff, MD3; Avindra Nath, MD4; Susan Laird, MSN5; John Iskander, MD6 (View author affiliations)

    https://www.cdc.gov/mmwr/volumes/65/wr/mm655051a4.htm#B1_down

    Intro:

    Chronic fatigue syndrome (CFS) is a complex and serious illness that is often misunderstood.

    Experts have noted that the terminology “chronic fatigue syndrome” can trivialize this illness and stigmatize persons who experience its symptoms (1).

    The name was coined by a group of clinicians convened by CDC in the late 1980s to develop a research case definition for the illness, which, at the time, was called chronic Epstein-Barr virus syndrome.

    The name CFS was suggested because of the characteristic persistent fatigue experienced by all those affected and the evidence that acute or reactivated Epstein-Barr virus infection was not associated with many cases (2).

    However, the fatigue in this illness is striking and quite distinct from the common fatigue everyone experiences.

    A variety of other names have been used, including myalgic encephalomyelitis (ME), ME/CFS, chronic fatigue immune dysfunction, and most recently, systemic exertion intolerance disease (3).

    The lack of agreement about nomenclature need not be an impediment for advancing critically needed research and education. The term ME/CFS will be used in this article.

    ME/CFS is a Significant Public Health Problem

    Extrapolating from the three U.S. population-based studies, it is estimated that at least one million persons in the United States suffer from ME/CFS (46).

    These studies indicate that ME/CFS is three to four times more common in women than in men.

    Persons of all racial and ethnic backgrounds are affected; however, the illness is more prevalent in minority and socioeconomically disadvantaged groups.

    The highest prevalence of illness is in persons aged 40–50 years, but the age range is broad and includes children and adolescents.


    ME/CFS patients, their families, and society all bear significant costs associated with this illness.

    These include direct medical costs for provider visits and medications and indirect costs of lost productivity.

    In the United States, the estimated annual cost of lost productivity ranges from 9–37 billion dollars, and for direct medical costs, ranges from 9–14 billion dollars, with nearly one quarter of direct medical expenses paid directly by patients and their families (79).

    When ME/CFS occurs in patients aged <25 years, these patients might not achieve their full educational potential, resulting in a life-long impact on their earnings (7).

    ME/CFS patients have significant functional impairment as illustrated by findings from CDC’s ongoing study of patients in seven clinics of ME/CFS specialists (Figure).

    Functioning of ME/CFS patients, as measured by subscale scores on the 36-Item Short Form Survey (SF-36), were well below those of healthy persons except for the two subscales reflecting mental and emotional functioning.

    Despite the severity of their illness, ME/CFS patients face significant barriers to receiving appropriate health care.

    A population-based study in Georgia found that 55% of persons with ME/CFS reported at least one barrier to health care; for example, 10% had financial barriers to seeking needed health care (10).

    Most persons with ME/CFS identified in population surveys have been ill >5 years and only approximately half continue to seek medical care (46). Further, only approximately 20% received a diagnosis, emphasizing the need for more physician education about this illness.

    Read more at the link above...
    (Each sentence was given a new paragraph to make reading easier)
     
    Woolie, TiredSam, merylg and 18 others like this.
  2. Kati

    Kati Patient in training

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    "It is clear that more basic science research is needed. In September 2015, the NIH intramural program began developing a research protocol to study ME/CFS. The overall hypothesis is that ME/CFS is attributable to an infection that results from immune-mediated brain dysfunction in some patients with acute onset illness."
     
  3. duncan

    duncan Senior Member

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    "Other studies have found that, compared with healthy controls, persons with ME/CFS have had exposure to significantly more stressors (trauma and other adverse life events)..."

    "Significantly" more.

    Quite the embedded seed, that.
     
    Woolie, Valentijn, Laurie P and 8 others like this.
  4. Kati

    Kati Patient in training

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    Trauma from horrible care by health care professional is a stressor indeed.
     
  5. duncan

    duncan Senior Member

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    Under Treatments, several gems:

    "Nonpharmacologic approaches might include Epsom salt soaks, massage..." :cautious:

    "Patients should be encouraged to remain active, but not too active..." o_O

    "They need to start with very low levels of activity and escalate the levels slowly." Er, I thought this group was supposed to be listening to patients and patient advocates.

    I almost would prefer if they had instead just simply admitted, "As of this moment, there are no effective treatments for the majority of ME/CFS sufferers, which is a major reason why research is desperately needed." And left it at that.
     
    Last edited: Dec 29, 2016
    Woolie, TiredSam, Esther12 and 20 others like this.
  6. Kati

    Kati Patient in training

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    That is truly maddening. Self-management is not treatment.

    It reminds me that the section of "general treatment" on this forum need cleaning up. Alternative medicine self-treatment experiments are not medical treatments. By declaring them treatments we are sending a message to the physicians out there that non-evidence patient experiment can pass as evidence-based treatment.

    My 2 cents.
     
    Last edited: Dec 29, 2016
    Woolie, GreyOwl, A.B. and 17 others like this.
  7. mfairma

    mfairma Senior Member

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    I didn't bother reading. I applied the Unger test. Is Unger involved? Yes? Then don't waste your energy.

    There are other people involved, but her name is enough to know there will be some shit slogging to do, whatever the good.
     
  8. geraldt52

    geraldt52 Senior Member

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    Classic Unger. Classic CDC. God help us if the CDC is our last hope. Unger will still be talking about talking about it when my ashes are scattered.
     
    Woolie, duncan, shannah and 1 other person like this.
  9. medfeb

    medfeb Senior Member

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    Their trauma/adverse events claim is largely based on a Reeves (empirical) study that the IOM dismissed because the definition "resulted in a biased sample with overrepresentation of individuals with depression and posttraumatic stress disorder."
     
    Woolie, Gemini, TiredSam and 16 others like this.
  10. Kati

    Kati Patient in training

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    So why are they hanging on to this?
     
    merylg and Never Give Up like this.
  11. HowToEscape?

    HowToEscape? Senior Member

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    Any bureaucracy will hang onto it's prior actions. In the world of bureaucracy, the Agency is never wrong, and when it does harm it is never responsible. "A bureaucracy is about process, not results." That is not unique to the CDC, it's a basic law of bureaucracy. C.S. Lewis observed this about 100 years ago.
     
  12. medfeb

    medfeb Senior Member

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    Good question. CDC appears to still defend the Reeves definition/method as an appropriate approach - they issued that paper last Feb that stated that Reeves and Fukuda selected the same set of patients. I imagine CDC was also influential in the NIH intramural study originally picking Reeves for patient selection. I don't know how they reconcile that with the IOM statement.
     
  13. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    There are often laws, rules and unwritten rules that enshrine this.
     
  14. Kati

    Kati Patient in training

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    @HowToEscape? this brings me to the question... How to escape? :lol:
     
    Comet likes this.
  15. Webdog

    Webdog Nothing left to say

    Hypothetically, say I was going to meet with a very high level CDC official at a party next month. Any suggestions for interesting questions?

    Hypothetically of course.
     
    Comet and Jennifer J like this.
  16. Snow Leopard

    Snow Leopard Hibernating

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    Why has the CDC not bothered to do a study to estimate disease burden (calculation of DALYs)?
     
    duncan, Jennifer J and Webdog like this.
  17. Kati

    Kati Patient in training

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    Why does CDC can't give up the psycho-social explanation of the disease?
    What responsibility do they take in not controlling the disease (CDC= center for diseases control)
    Why are things moving so slowly?
    When will CDC publish about their big study- involving over 400 patients?
    When will CDC remove harmful information frm their website?
     
  18. Artstu

    Artstu Senior Member

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    I was exposed to some hassle and pressure at the time I became ill, whether that played a part in me becoming ill I don't know.
     
  19. lnester7

    lnester7 Seven

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    Getting on cars in front of the CDC and stop all traffic everyday at peak hour when they want to go out to dinner and lunch, "Oh we are pacing". I am tired so now I need to take a break IN THE MIDDLE OF THE STREET.
    Bunch of dumb arses. Only when they see the ridiculousness of the suggestion and how hard it is to implemented and real life and how disruptive this recommendation is for the rest of society (not just to ourself and families like today) then things will change.
     
    ScottTriGuy likes this.
  20. medfeb

    medfeb Senior Member

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    I agree with many of the concerns along with others in the article and the need for CDC to clean up its medical education.

    But there are a few positive things in the article - This is the first time to my knowledge that CDC has provided a linked to the IACFS/ME Primer - in the section on treatments and symptom management. CDC has always maintained they can not link to the primer because its not published.
    They also don't use the terms CBT and GET. But I agree that the text that's provided with activity management will lead to inappropriate and harmful recommendations by doctors who have been conditioned by years of PACE style recommendations.
     
    Woolie, Snow Leopard, duncan and 4 others like this.

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