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ME:Unknown cause, no cure new hope

Discussion in 'General ME/CFS News' started by Countrygirl, Mar 8, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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    http://www.asbmb.org/asbmbtoday/201803/Feature/ME/

    Click on the link for the full article.

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    By Lily Williams

    Lizzie Mooney is 12 years old. She is tall for her age with long blonde hair. She likes to wear Chicago Bears pajama bottoms and a hoodie. She’s funny, making up games and teasing her siblings.

    Lizzie excels in reading and math. She spends time crafting and watches science shows with her parents at night. But it’s hard for her to make it downstairs to the TV room. She can’t go to school. In fact, she might only leave her house once a week.

    For the past three years, Lizzie has been sick.

    The government estimates that as many as 1 million to 2.5 millionAmericans have the same disease as Lizzie: myalgic encephalomyelitis, or ME. Despite these numbers, you probably haven’t heard of ME. What you might have heard of instead is chronic fatigue syndrome, or CFS. This euphemism for ME conjures an image of someone who just doesn’t feel like getting out of bed.

    [​IMG]Lizzie Mooney has myalgic encephalomyelitis. Her health has decreased over the past three years to the
    point where she can barely leave her house or even eat meals at the table with her family.LILY WILLIAMS


    For many ME patients, getting out of bed would be the highlight of their week or month. About 25 percent of patients are housebound, in rooms with the blinds drawn and noises muffled. Patients’ bodies are sensitive to all kinds of stimulation; they suffer from gastrointestinal problems, inability to sleep, chronic pain and the disease’s trademarks: cognitive dysfunction and post-exertional malaise, or PEM. Many patients describe PEM as a crash. Something as simple as a short walk can severely worsen a patient’s symptoms, leaving them bedridden, unable to recover, for weeks or months. There’s no telling how long the crash will last. Imagine having to decide between taking a shower and making yourself lunch. It could be your only activity for the week. Patients with ME have reported lower quality-of-life scores than patients with terminal cancer and heart disease.

    Yet federal funding for ME research remains at a fraction of what is spent on each of these. In fact, research funding for ME remains less than what the government spends on headaches or hay fever. Multiple sclerosis funding is 12 times the funding for ME, but an estimated 400,000 patients in the U.S. have MS, fewer than half the number who have ME even according to the most conservative estimate.

    When Lizzie got sick, her mother, Amy Mooney, took her to their primary care physician, who diagnosed Lizzie with a mononucleosislike illness.
     
  2. Gemini

    Gemini Senior Member

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    echobravo, Mel9, Laurie P and 2 others like this.
  3. lnester7

    lnester7 Seven

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    Please make sure to comment there, and give traffic, so we get another reporter in our side (and the platform to want to publish ME articles).
     
    shannah, Laurie P, Gemini and 2 others like this.
  4. blueberry

    blueberry

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    Excellent article.
     
    Laurie P likes this.
  5. Gemini

    Gemini Senior Member

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    Indeed, @lnester7.

    Author Lily Williams did an outstanding job getting the science correct as well as the human toll ME/CFS takes.

    Wonder if ASBMBTODAY has sole rights to the article or if it could be reprinted/published by other professional societies like infectious diseases, neurology, hospitals, physicians, nurses, etc.?

    Perhaps @viggster or someone in publishing could shed light on that possibility?
     
    lnester7 and Laurie P like this.
  6. Gemini

    Gemini Senior Member

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    Because of the article's extensive, and excellent, ME advocacy coverage including of the film UNREST another thought is that it be made a May 12th project distributed if possible as part of this year's activities...

    A "print" media blitz going out to the healthcare sector, Congressional representatives, government agencies, translated for distribution worldwide...

    @Emily Taylor of Solve and @JenB of #MEACTION thoughts along this line?

    @Rivka and @medfeb many thanks for contributing to the article.
     
    Mel9, Laurie P, medfeb and 1 other person like this.
  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I'm also very impressed with the excellent coverage the author gave.:thumbsup:
     
    echobravo, Laurie P, Mel9 and 2 others like this.
  8. maybe some day

    maybe some day Senior Member

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    I read this just the other night very good article.
     
  9. Wally

    Wally Senior Member

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    [Moderator note: This post has been merged into this thread so the phrasing doesn't match the context.]

    @Sushi or to the other moderators. Thank you for merging this thread, not sure why this thread did not come up when I searched to see if this article had already been posted? I have edited my comment further, so hopefully the phrasing will now flow better as a reply to this thread rather than as first written as a new post. Wally”
    ————


    As identified above this article appears in the March 2018 publication of ASMBM Today. “ASMBM” stands for the “American Society for Biochemistry and Molecular Biology”. Wikipedia describes the ASBMB as follows:

    “The ASBMB was originally called the American Society of Biological Chemists, before obtaining its current name in 1987. The society is based in Rockville, Maryland. ASBMB's mission is to advance the science of biochemistry and molecular biologythrough publication of scientific and educational journals, the organization of scientific meetings, advocacy for funding of basic research and education, support of science education at all levels, and by promoting the diversity of individuals entering the scientific workforce. The organization currently has over 12,000 members.” https://en.m.wikipedia.org/wiki/American_Society_for_Biochemistry_and_Molecular_Biology.

    Here is information about the author of this article (Lily Williams), which can be found at the end of the article. http://www.asbmb.org/asbmbtoday/201803/Feature/ME/

    [​IMG]
    Lily Williams has a B.A. in ecology, evolution and organismal biology from Vanderbilt University and an M.S. in science, health and environmental journalism from Medill School of Journalism at Northwestern University. She is a freelance journalist and communications director based in Asheville, N.C. This is her contact e-mail address - mailto:Williams.lilybeth@gmail.com

    She has put together quite a detailed article that covers a lot of territory about ME and CFS, both historically politically and scientifically. She also appears to have conducted a number of interviews and/or collected information from several prominent patients, advocates, researchers and journalists for this article.

    I also found the comments about this article, made by the managing editor of “ASMBM Today”, to be very enlightened when discussing illness, women and M.E. . Here is the link to the editors comments (titled “Not crying wolf”). https://en.m.wikipedia.org/wiki/American_Society_for_Biochemistry_and_Molecular_Biology

    The managing editor of this publication is Comfort Dorn. She says she first heard about M.E. from an interview with Laura Hillenbrand about her book “Seabiscuit”.
    https://www.asbmb.org/asbmbtoday/201803/Editorsnote/

    I also believe that this article is definitely worth patients (and others) reading or having someone read it to you, if as a patient you have difficulty reading a lengthy article. I would also recommend sharing the article and providing a comment about the article (via the link to the article noted above), if you find the article to be interesting and/or you feel it needs any clarification or correction.

    The question I am left with after reading this article is who and what attracted Lily Williams to write about ME/CFS and why did this publication/organization decide to publish this article? Also is this author and/or this publication open to or already considering any future articles about this illness?
     
    Last edited: Mar 10, 2018
    Mel9, Gemini, PatJ and 3 others like this.
  10. TG95

    TG95

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    ukxmrv, Gemini, echobravo and 3 others like this.
  11. viggster

    viggster Senior Member

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    You need to ask the publisher. Different publishers adhere to different rules.
     
    MEMum likes this.
  12. Gemini

    Gemini Senior Member

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    Thanks, @viggster.

    Just sent an inquiry to ASBMBTODAY's Editor asking for rules & procedures as you suggested.

    Thanks also for participating in the NIH study and for your updates about it. Very much appreciated!
     
  13. Cort

    Cort Phoenix Rising Founder

    This is most comprehensive review of ME/CFS I've ever seen in the press! It has over 130 comments now...It's also the beautifully shot piece I've ever seen on ME/CFS.

    She hits so many high points

     
    MEMum, Mel9 and pattismith like this.

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