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NYT New Recognition for Chronic Fatigue

Discussion in 'General ME/CFS News' started by Ecoclimber, Nov 27, 2017.

  1. Ecoclimber

    Ecoclimber Senior Member

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    New Recognition for Chronic Fatigue

    Personal Health
    By JANE E. BRODY NOV. 27, 2017
    New York Times


    Having recently endured more than a month of post-concussion fatigue, I can’t imagine how people with so-called chronic fatigue syndrome navigate through life with disabling fatigue that seemingly knows no end. Especially those who are erroneously told things like “It’s all in your head,” “Maybe you should see a psychiatrist,” or “You’d have a lot more energy if only you’d get more exercise.”

    After years of treating the syndrome as a psychological disorder, leading health organizations now recognize that it is a serious, long-term illness possibly caused by a disruption in how the immune system responds to infection or stress. It shares many characteristics with autoimmune diseases like rheumatoid arthritis but without apparent signs of tissue damage.

    Accordingly, doctors now typically refer to it as myalgic encephalomyelitis, meaning brain and spinal cord inflammation with muscle pain, and in scientific papers it is often written as ME/CFS. At the same time, a major shift is underway as far as how the medical profession is being advised to approach treatment.

    The longstanding advice to “exercise your way out of it” is now recognized as not only ineffective but counterproductive. It usually only makes matters worse, as even the mildest activity, like brushing your teeth, can lead to a debilitating fatigue, the core symptom of the disease.

    Both the Centers for Disease Control and Prevention in the United States and the National Institute for Health and Care Excellence in Britain are formulating revised guidelines for managing an ailment characterized by six or more months — and sometimes years — of incapacitating fatigue, joint pain and cognitive problems.

    his new thinking is long overdue. It is understandably difficult for doctors to appreciate that a disorder lacking obvious physical abnormalities could have a physical basis, especially when patients debilitated by a chronic disease that no one understands are likely to be depressed and anxious....

    Continue reading the main story
     
    Last edited by a moderator: Nov 27, 2017
    Mary, E.man, Mel9 and 11 others like this.
  2. alex3619

    alex3619 Senior Member

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    This is mostly good, but I am concerned about the second last para on drug therapy developed for attention deficit issues. These are typically stimulants and while some report short term improvement its also reported they are not tolerated by some for more than a few days. I know of one patient who uses a stimulant on big days ... one dose, once.
     
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  3. Stretched

    Stretched Senior Member

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    Today’s NYT (Nov 27, 2017, Personal Health, by Jane Brody) has a front page article online describing MECFS the way we do, sic here at PR! This is a good one to send to others, especially doctors. (Excerpt):

    https://www.nytimes.com/2017/11/27/...l?smprod=nytcore-ipad&smid=nytcore-ipad-share

    NEW RECOGNITION FOR CHRONIC FATIGUE

    ...Accordingly, doctors now typically refer to it as myalgic encephalomyelitis, meaning brain and spinal cord inflammation with muscle pain, and in scientific papers it is often written as ME/CFS. At the same time, a major shift is underway as far as how the medical profession is being advised to approach treatment.

    The longstanding advice to “exercise your way out of it” is now recognized as not only ineffective but counterproductive. It usually only makes matters worse, as even the mildest activity, like brushing your teeth, can lead to a debilitating fatigue, the core symptom of the disease. Both the Centers for Disease Control and Prevention in the United States and the National Institute for Health and Care Excellence in Britain are formulating revised guidelines for managing an ailment characterized by six or more months — and sometimes years — of incapacitating fatigue, joint pain and cognitive problems... .
     
    Last edited: Nov 27, 2017
    Mary likes this.
  4. perrier

    perrier Senior Member

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    I'm concerned by the multiple uses of the word Fatigue.
    It is NOT fatigue: it is weakness, sick feeling, malaise, toxic feeling, feeling like one is dying, OI, GI distress, nausea, poor circulation, low BP, cognitive problems, temperature disregulation, etc.

    I do not have this condition, and I know what really severe fatigue is from over working which I'm prone to: And i never feel like my poor beloved daughter does.
     
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  5. Uk125250

    Uk125250

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    I think it’s a great article, because we are not only fighting our bodies, but those around us that don’t understand how bad it is. Hearing, “You just need to get up and do more.”, is disheartening. It is also very bad advice.
     
    Mary, Advocate, ballard and 1 other person like this.
  6. Webdog

    Webdog Senior Member

    I keep low dose Vyvanse (10mg) on hand for when I must function and be alert. This is at most once a month. Taking a stimulant always requires at minimum 2-3 days of solid rest afterwards to get back to baseline. So it is not a practical treatment.

    I used to take larger doses of stimulants several times a week (Ritalin, Adderall, Vyvanse... all prescribed by a doctor), and feel that continued use contributed to my significant decline in health and loss of ability to have remissions. I always feel physically sick taking stimulants, but in the past they allowed me to hold down a part time job for a few years (at the expense of my long term health).

    In my case, ME/CFS cognitive symptoms were misdiagnosed by one doctor as attention deficit disorder, and stimulants were prescribed. I do not think this is uncommon.

    Like @alex3619, I am concerned about prescribing stimulants for ME/CFS patients. In the only stimulant study I'm aware of, the "Synergy Trial" at Stanford, "the difference between the two groups did not achieve statistical significance".

    http://solvecfs.org/preliminary-results-from-synergy-trial-released/
     
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  7. Gemini

    Gemini Senior Member

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    East Coast USA
    Been following NYT ME/CFS coverage for years; had a couple of Letters To The Editor published by them.

    Agree @Uk125250, I think this is one of their best ME/CFS articles to date.

    Also agree with @alex3619 and his concern.

    Wonder if @JenB and her team might consider giving Jane Brody a complimentary copy of UNREST if they haven't done so already?
     
    Last edited: Nov 27, 2017
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  8. Uk125250

    Uk125250

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    I’m going to try to get everyone I know to watch it. Obviously, people in the media can help exponentially by bringing awareness to the masses.
     
    Advocate and Gemini like this.
  9. alex3619

    alex3619 Senior Member

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    The media nearly always gets this wrong, though recently I have seen some articles get it right. They are slowly learning, but progress is being made.
     
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  10. HowToEscape?

    HowToEscape? Senior Member

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    Anything in the newspaper about a technical subject will be typically at least half wrong sometimes 150% wrong. Set expectations accordingly.
    Amphetamines ( what they’re calling ADD medication) were in PDR for our disease. I don’t have a copy of PDR, they might even still be there. They do sort of work....
    until you crash like a dump truck dropped off a bridge
     
    Advocate likes this.
  11. lnester7

    lnester7 Seven

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    Please comment on article, the more traffic we give to news paper, the more they will want to cover!!! We can work on accuracy and educate the writers as we go. At least are not BPs model supporters.
     
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  12. alex3619

    alex3619 Senior Member

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    I wrote a lot of comments, but they are waiting for moderation.
    PS My comments are now showing. The time stamp appears to be when they were approved, not when they were submitted.
     
    Last edited: Nov 28, 2017
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  13. alex3619

    alex3619 Senior Member

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    I suspect that in some cases, like this one, the big problem is in editors, not the writers.
     
  14. Forbin

    Forbin Senior Member

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    True. When I look over my notes from when I first became ill (several years before they came up with the term "Chronic Fatigue Syndrome"), I never used the word "fatigue," simply because it implies a reaction to effort. I used words similar to those you've used above. It's true that people get worse after effort, but they don't feel well in the absence of effort.

    If they had to use the word "fatigue" in the name, it would've been more correct to have called it "Chronic Idiopathic Fatigue Syndrome."
     
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  15. Forbin

    Forbin Senior Member

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    The drawing of a sufferer that accompanies this article is interesting. The posture of the seated figure has her reclined at a severe angle in the chair - virtually as close to lying down as one could be in that chair. It's interesting because, as I recall, this was a posture that was mentioned in "Osler's Web." Doctors recognized it in the patients they were seeing back in the 80's.

    It's not much of a leap to imagine that this is the posture of someone with OI who is, perhaps unconsciously, trying to reduce the effects of low blood pressure. It's the way I'm usually seated - like right now.

    It's odd that this cartoon is more accurate, in its way, than most of the images that accompany articles on ME/CFS.

    https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html#story-continues-2
     
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  16. Mel9

    Mel9 Senior Member

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    NSW Australia

    Yes, this is the way I sit if I don't have a foot rest and cannot sit on the floor: anything to avoid having the feet directly below the waist (which hurts!)
     
    Forbin likes this.

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