Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Medscape Article On The Management of Chronic Fatigue

Discussion in 'General ME/CFS News' started by Never Give Up, Oct 14, 2015.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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  2. Valentijn

    Valentijn The Diabolic Logic

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    Looks pretty good. He discusses ME/CFS as something distinct from other types of fatigue, and uses the IOM definition (with PEM) to describe it. CBT and GET are mentioned, but not with any particular enthusiasm.
     
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  3. Sidereal

    Sidereal Senior Member

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    Decent article, calm and measured tone. Avoids controversy.
     
  4. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Written by a sleep doctor who made some very important points about the difficulties in teasing out the causes of chronic fatigue.

    Overall I liked it, but was annoyed by a few statements, like, "...an expert panel convened by the Institute of Medicine (IOM) recently found that ME/CFS is a disease with a physiologic basis.[4] It is not a purely psychological problem."(Thanks for that.)

    Here's what I liked.

    "As a sleep physician, I am often asked to evaluate patients with a complaint of fatigue—which raises the question, how does a physician differentiate ME/CFS from other common causes of fatigue? Regardless of etiology, how do we manage fatigue?

    Any discussion of fatigue must begin by defining the term. Max Hirshkowitz, PhD, a professor and renowned sleep researcher at Baylor College of Medicine, provided a complete definition that will serve as a reference for the remainder of this review.[5] He stressed the following points:

    Fatigue is perceived as a sense of tiredness, exhaustion, or lack of energy.

    Fatigue that is nonpathologic will improve with rest. (Great way to differentiate.)

    Fatigue can be provoked by exceeding capacity in terms of time-on-task or stress load.

    Stress load can be altered by external (environmental) or internal (genetic predisposition, medical or behavioral illness) factors.

    Sleep duration, quality, and timing are significant mediators of the manifestations of fatigue.

    In a global sense, then, fatigue occurs when circumstances require some combination of physical and cognitive work that exceeds the capacity of the individual. The point at which this will occur varies by genetics, training, and sleep." (And disease)

    You've got to feel for how difficult it must be for them without bio markers or the clear understanding that comes from seeing tons of ME patients.

    "Differentiating ME/CFS from fatigue due to more common causes will be difficult. To begin with the definition of ME/CFS is nebulous. The Annals of Internal Medicine systematic review noted that eight case definitions have been used in the literature to define ME/CFS; the new case definition presented by the IOM is the ninth case definition proposed.[1] In general, studies that evaluated the different case definitions recruited patients from specialty clinics and compared them with asymptomatic controls.(I'm so glad that they are starting to get this.)

    Some studies were more inclusive than others, and most required that alternative causes of fatigue be excluded. In clinical practice, we need to be able to distinguish patients with ME/CFS from those with fatigue from other causes, so it's unclear whether these scores will be helpful when we evaluate our patients. Symptoms were more severe in patients defined as having ME or ME/CFS than in those with CFS alone. In addition, the reference standard used to establish the diagnosis was not standardized, so comparisons across studies is difficult.[1](Amen to that!)"

    "First, although prevalence rates vary by definition, estimates range between 0.3% and 2.5% of the population.[1] One could therefore argue that ME/CFS is not as rare as we think (or as I thought), so it should be considered during a fatigue evaluation. (he seems to be taking the IOM report seriously! )

    Second, properly characterizing fatigue will require a very thorough history. Time course and contributing factors are critical. Clinics that frequently manage fatigue complaints would be well-served by designing questionnaires to be filled out before appointments, lest they attempt to fit a 60-minute history into a 15-minute appointment slot." (Yes!)

    "Although both OTS and OR should improve with rest (whereas ME/CFS will not), with OTS in particular, it may take months before the patient feels better. In many cases, the true cause of fatigue will only be apparent with response to rest over a period of many months." (This indicates a change in thinking from go away, rest and leave me alone, to go rest and if you don't get better, you may have ME/CFS)

    "Modafinil, armodafinil, and amphetamine-based medications also have proven wakefulness-promoting and cognitive effects.[21] It is important to note that none of these medications should be thought of as a substitute for sleep. They help with executive function and promote wakefulness, but do nothing to restore physiology otherwise. They can be used as mitigating agents, but none are considered a treatment per se for ME/CFS, OTS, or sleep-related disease." (He said it!)

    "Trials of an immune-modulator called rintatolimod, an intravenously delivered medication that is not approved by the US Food and Drug Administration for any indication at this time, also suggested benefit.[2]"( Indicating the ossibility of an immune problem. Just before this he mentioned CBT and GET, like @valentine said, with little enthusiasm.)

    "In summary, fatigue is a common patient complaint. ME/CFS has a prevalence of 0.3%-2.5%, and should be considered as a possible cause for fatigue. It is difficult to distinguish ME/CFS from other common causes, and to an extent, it will be a diagnosis of exclusion.

    There are countless medical, behavioral, and psychological causes of fatigue that are unrelated to ME/CFS but share similar characteristics with this syndrome. A comprehensive history and medical evaluation is important, and a trial of rest and removal from significant stressors is needed for proper diagnosis and treatment. More research on diagnostic criteria and therapy is needed, but the recent Annals of Internal Medicine and IOM reports highlight the importance of recognizing this disabling disease."

    PROGRESS!
     
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  5. Bob

    Bob

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    Yes, I enjoyed that article as well. It's basically saying that fatigue has different causes and it's not the same as ME/CFS. A lot of common sense, written by an expert who cares about her subject. Most unusual! Plenty of illumination and no heat. More of it please.
     
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