The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Articles on the release of the IOM report

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Feb 10, 2015.

  1. Nielk

    Nielk

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    Chronic fatigue syndrome is a physical disorder, not a psychological illness, panel says – The Washington Post

    Institute of Medicine calls for renaming chronic fatigue syndrome – AlJareeza America

    Chronic Fatigue Syndrome gets yet another name – New Scientist

    New Name, Criteria for Chronic Fatigue Syndrome? – WebMD

    Redefining chronic fatigue with better diagnosis, new name – UTSanDiego

    Chronic Fatigue Syndrome Gets a New Name – NYTimes

    Panel asks: What defines chronic fatigue syndrome? – MedicalXpress

    Chronic fatigue is real, serious and needs a new name, panel says - Today Health


    Chronic fatigue syndrome patients’ fear of exercise can hinder treatment – study – The Gardian

    IOM Gives Chronic Fatigue Syndrome a New Name and Definition – Medscape

    Chronic-Fatigue Syndrome Gets Controversial Redefinition - Scientific American


    Seeking to redefine chronic fatigue syndrome, advisory group urges new name, better diagnosis – US News & World Report


    Chronic Fatigue Syndrome Gets a New Name – NY Times Dave Tuller


    Report urges better diagnosis for chronic fatigue syndrome – PBS Newshour

    Seeking to redefine chronic fatigue syndrome, advisory group urges new name, better diagnosis – The Province

    Redefining the Chronic Fatigue Syndrome – Annals

    Goodbye chronic fatigue syndrome, hello SEID – Science Insider

    Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome An IOM Report on Redefining an Illness – Jama
    CFS Is Not a Psychological Illness or Exercise Phobia - Penny Swift


    Redefining Chronic Fatigue With Better Diagnosis, New Name – ABC News

    New Name, New Criteria for Chronic Fatigue Syndrome? - HealthDay
     
    Last edited: Feb 10, 2015
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  2. Nielk

    Nielk

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    Please add here as you find new ones.
     
  3. L'engle

    L'engle moogle

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    @Neilk Wow are these all today?! Thanks for the great list.
     
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  4. Sidereal

    Sidereal Senior Member

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    Better than the recent PACE media blitz at least.
     
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  5. Ecoclimber

    Ecoclimber Senior Member

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    I thought it was important to include one place for all the news articles on the major development on the release of the IOM report. Many have posted within lengthly threads and in created threads on the major news releases concerning the name change and is no disrepect for their contribution and efforts.

    http://www.pbs.org/newshour/rundown/report-urges-new-name-better-diagnosis-chronic-fatigue/
    Report urges better diagnosis for chronic fatigue syndrome
    BY Lauren Neergaard February 10, 2015 at 11:46 AM EST

    Bestselling author Laura Hillenbrand, whose books include “Unbroken” and “Seabiscuit,” has suffered from chronic fatigue syndrome for years. Photo by Bill O’Leary/The Washington Post via Getty Images

    WASHINGTON — Chronic fatigue syndrome is a real and serious disease that needs a new name to reflect that — and a straightforward way to diagnose the illness, a government advisory group declared Tuesday.

    Patients flooded the prestigious Institute of Medicine with stories of years of misdiagnosis or even being dismissed by skeptical doctors. Tuesday, an IOM panel sought to redefine this long-controversial ailment, setting five main symptoms as simple criteria for doctors to use in making a diagnosis.

    And the report called for a new name to replace the “chronic fatigue” moniker that so many patients said belittled their suffering. The choice: Systemic Exertion Intolerance Disease, or SEID, to reflect that symptoms worsen after exertion.

    People shouldn’t “wander around in the wilderness for years trying to get a diagnosis,” said Dr. Ellen Wright Clayton, a Vanderbilt University specialist on genetics and the law, who chaired the committee and said it “issued a clarion call” for physicians to do a better job.

    The report stressed, “It is not appropriate to dismiss these patients by saying, ‘I am chronically fatigued, too.’”


    http://www.today.com/health/chronic-fatigue-syndrome-real-dont-call-it-panel-says-2D80484902

    Chronic fatigue is real, serious and needs a new name, panel says

    Maggie Fox NBC News

    Chronic fatigue syndrome is real and doctors should take it seriously, the influential Institute of Medicine said Tuesday

    But it needs a new name to distance it from the stigma of being an imaginary illness, and doctors need clear criteria to diagnose it.

    “The committee recommends that this disorder be renamed ‘systemic exertion intolerance disease’ (SEID),” the panel of experts said. “SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.”

    Too many doctors dismiss patients with the condition, which is characterized by extreme fatigue, the panel of experts says. The Institute is an independent, non-governmental organization that guides the federal government on important medical issues. Its reports are often considered the final word on a subject.

    This report could transform the way doctors treat ME/CFS, which will almost certainly now be called SEID. Insurers will likely change the way they ask doctors to code the diagnosis and the way they pay for it.


    http://www.washingtonpost.com/news/...ot-a-psychological-illness-expert-panel-says/

    Chronic fatigue syndrome is a physical disorder, not a psychological illness, panel says
    By Lenny Bernstein February 10
    "We just needed to put to rest, once and for all, the idea that this is just psychosomatic or that people were making this up, or that they were just lazy," said Ellen Wright Clayton, a professor of pediatrics and law at Vanderbilt University, who chaired the committee of the Institute of Medicine, the health arm of the National Academy of Sciences.

    Although the cause of the disorder is still unknown, the panel established three critical symptoms for the condition (also known as myalgic encephalomyelitis):...

    ....
    The panel acknowledged what people with chronic fatigue syndrome have long complained about: They struggle, sometimes for years, before finding a health-care provider who diagnoses a disorder that often devastates their lives. Sixty-seven percent to 77 percent reported in surveys that it took longer than a year to receive a diagnosis, and about 29 percent said it took longer than five years. The vast majority of people with the disorder remain undiagnosed, the panel said, estimating that between 836,000 and 2.5 million Americans have it.

    "Seeking and receiving a diagnosis can be a frustrating process for several reasons, including skepticism of health care providers about the serious nature of [chronic fatigue syndrome] and the misconception that it is a psychogenic illness or even a figment of the patient’s imagination," the panel wrote. Less than a third of medical schools include the condition in their curricula and only 40 percent of medical textbooks contain information on it, the experts said.

    The cause remains unknown but symptoms may be triggered by an infection or "immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals and, rarely, blood transfusions." Clayton said mononucleosis is "a major trigger" of chronic fatigue syndrome among adolescents, but little is known about causes beyond that.

    http://www.cbsnews.com/news/rebranding-chronic-fatigue-syndrome/

    By Dennis ThompsonHealthDayFebruary 10, 2015, 1:39 PM

    Rebranding chronic fatigue syndrome

    Chronic fatigue syndrome, a debilitating illness affecting up to 2.5 million Americans, may soon get a new name and set of diagnostic criteria. In a report released Tuesday, an independent panel of experts convened by the U.S. government called the illness a "legitimate" disease that features five main symptoms and should be taken seriously by physicians.

    In fact, the Institute of Medicine (IOM) committee behind the report is urging that chronic fatigue syndrome be renamed "Systemic Exertion Intolerance Disease," to better reflect the seriousness of its effect on patients.

    The new report could prove a watershed moment following years of struggle for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), who often have had to fight to convince doctors that something was truly wrong with them, said Suzanne Vernon, scientific director of the Solve ME/CFS Initiative.

    "I believe we are at a tipping point for people suffering from ME/CFS, where we are going to be able to get people diagnosed, and with that diagnosis comes the ability for us to really lay the groundwork for much more effective treatment for ME/CFS," Vernon said.

    "In its most severe form, this disease can consume the lives of those whom it afflicts," the IOM panel said in a news release. "It is 'real.' It is not appropriate to dismiss these patients by saying, 'I am chronically fatigued, too.' "

    http://www.philly.com/philly/health...__What_Defines_Chronic_Fatigue_Syndrome_.html
    Dennis Thompson HealthDay Reporter

    [​IMG]
    Filed Under: Diseases & Conditions / Misc. | Doctors | Fatigue | Immune Disorders

    Posted: Tuesday, February 10,

    (HealthDay News) -- Chronic fatigue syndrome is about to get a new clinical definition, with the hope that it will help physicians better diagnose people afflicted with the mysterious and complex disorder.
    On Tuesday, the Institute of Medicine will release a long-awaited report that will define diagnostic criteria for chronic fatigue syndrome and examine whether a new name for the disease is warranted.

    The report could prove a landmark moment following years of struggle for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), who often have had to fight to convince their own doctors that something was truly wrong with them, said Suzanne Vernon, scientific director of the Solve ME/CFS Initiative.

    "I believe we are at a tipping point for people suffering from ME/CFS, where we are going to be able to get people diagnosed, and with that diagnosis comes the ability for us to really lay the groundwork for much more effective treatment for ME/CFS," Vernon said.


    http://www.newscientist.com/article...drome-gets-yet-another-name.html#.VNpXfC6AmSo

    Chronic Fatigue Syndrome gets yet another name


    What's in a name? Chronic Fatigue Syndrome, a condition that debilitates as many as 2.5 million people in the US with exhaustion, should be renamed Systemic Exertion Intolerance Disease, according to the US Institute of Medicine (IOM).

    As well as the name-change, the IOM has this week proposed a five-point checklist for diagnosis. Because the cause of the condition, also known as myalgic encephalomyelitis or ME, remains unknown, identifying the condition can be difficult.

    "Our goal was to facilitate diagnosis," says Ellen Wright Clayton of Vanderbilt University in Nashville, Tennessee, and chair of the panel that drafted the report. "We hope these evidence-based diagnostic criteria provide a new foundation for future research regarding cause and treatment."

    Simon Wessely at King's College London welcomes the criteria, but is less convinced by the name-change. "I'm concerned it may add to, not reduce, confusion around this condition," he says.

    From The Associated Press News Wire to all news outlets:

    http://hosted.ap.org/dynamic/storie...ME&TEMPLATE=DEFAULT&CTIME=2015-02-10-16-37-12
    Redefining chronic fatigue with better diagnosis, new name

    By LAURAN NEERGAARD
    AP Medical Writer

    WASHINGTON (AP) -- Doctors are getting a new way to diagnose chronic fatigue syndrome - and influential government advisers say it's time to replace that hated name, too, to show it's a real and debilitating disease.

    The Institute of Medicine on Tuesday called on doctors to do a better job diagnosing an illness that may affect up to 2.5 million Americans, and it set five main symptoms as the criteria.

    And the IOM's choice of a new name - Systemic Exertion Intolerance Disease, or SEID - reflects a core symptom, that exertion can wipe patients out.

    "This is not a figment of their imagination," said Dr. Ellen Wright Clayton of Vanderbilt University's Center for Biomedical Ethics and Society, who chaired the IOM panel. "These patients have real symptoms. They deserve real care."

    Here are some things to know about the disorder:

    WHATEVER IT'S CALLED, WHAT IS THIS ILLNESS?

    Its hallmark is persistent and profound fatigue where, on a bad day, a simple activity like grocery shopping can put someone to bed. It's often accompanied by memory problems or other symptoms....

    ....WHAT HAPPENS NEXT?

    The IOM advised the government to develop a toolkit to help doctors diagnose the disease, and to make sure the disorder is assigned a specific medical billing code. The government is reviewing the recommendations.

    Committee members are spreading the word about the diagnostic criteria in medical journals, and the institute's web site, www.iom.edu , eventually will post a physician guide.

    http://www.webmd.com/chronic-fatigu...a-for-chronic-fatigue-syndrome?src=RSS_PUBLIC

    New Name, Criteria for Chronic Fatigue Syndrome?
    U.S.-appointed panel says illness is 'legitimate,' should be called Systemic Exertion Intolerance Disease

    WebMD News from HealthDay
    By Dennis Thompson
    HealthDay Reporter

    TUESDAY, Feb. 10, 2015 (HealthDay News) -- Chronic fatigue syndrome, a debilitating illness affecting up to 2.5 million Americans, may soon get a new name and set of diagnostic criteria.

    In a report released Tuesday, an independent panel of experts convened by the U.S. government called the illness a "legitimate" disease that features five main symptoms and should be taken seriously by physicians.

    In fact, the Institute of Medicine (IOM) committee behind the report is urging that chronic fatigue syndrome be renamed "Systemic Exertion Intolerance Disease," to better reflect the seriousness of its effect on patients.

    The new report could prove a watershed moment following years of struggle for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), who often have had to fight to convince doctors that something was truly wrong with them, said Suzanne Vernon, scientific director of the Solve ME/CFS Initiative.


    http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/?_r=4
    Chronic Fatigue Syndrome Gets a New Name
    By David Tuller February 10

    The Institute of Medicine on Tuesday proposed a new name and new diagnostic criteria for the condition that many still call chronic fatigue syndrome.

    An institute panel recommended that the illness be renamed “systemic exertion intolerance disease.” The term reflects what patients, clinicians and researchers all agree is a core symptom: a sustained depletion of energy following minimal activity, called post-exertional malaise.

    The new name “really describes much more directly the key feature of the illness, which is the inability to tolerate both physical and cognitive exertion,” said Dr. Peter Rowe, a member of the panel and a pediatrician at Johns Hopkins who treats children with the condition.

    The Institute of Medicine panel was convened at the request of the Department of Health and Human Services, the Centers for Disease Control and Prevention, the Food and Drug Administration and other federal agencies.

    The new recommendations are not binding, but they are likely to influence diagnosis and treatment of the disease.






     
    Last edited: Feb 10, 2015
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  6. JayS

    JayS Senior Member

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  7. Anne

    Anne Senior Member

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    I find the Medscape article to be the best one (that I've read).

    You?
     
  8. Nielk

    Nielk

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    Wow. Did any news media leave this out today?
    How did HHS reach all of them?
     
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  9. Nielk

    Nielk

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    Penny Swift's is very good too. I only read a few of them. I am burned out.
     
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  10. minkeygirl

    minkeygirl But I Look So Good.

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    @Nielk started one already. Maybe a mod @Sushi can combine these.
     
  11. Sushi

    Sushi Senior Member Albuquerque

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    There are a lot of duplications to sort out, but, unfortunately the Mods also have "Systemic Exertion Intolerance Disease" and the "sorting" takes exertion, so it will take a bit of time. :cool:
     
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  12. L'engle

    L'engle moogle

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    @ Neilk Thanks for your 'coverage' of today's events! Have a good rest.
     
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  13. Sasha

    Sasha Fine, thank you

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  14. L'engle

    L'engle moogle

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    The one in NYMag by Melissa Dahl is also well written. My only issue with that one is a description of orthostatic intolerance being when symptoms get 'a little bit worse' on upright posture, when in fact the symptoms can be very severe. Still a well written and clear article.
     
  15. L'engle

    L'engle moogle

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  16. Kina

    Kina

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    Yes, we will try to sort it all out tomorrow. I am, in short, brain dead at this point. :depressed::depressed::depressed:
     
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  17. Ecoclimber

    Ecoclimber Senior Member

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    @Sushi @minkeygirl @Kina

    Opps I checked with the moderators and got the Ok from Kina to start a thread. Maybe it is best to have it under both sections as readers/non members may not look under the IOM heading in Advocacy and Fund Raising Section but will look under General ME/CFS section.

    We have various threads in different ME/CFS sections on "fear avoidance cocerning exercise" on the PaceTrial in the BMJ and TheLancet when the SME inundated UK news media for blaming CFS patients for their lack of recovery on flaw research paper. So, may be we can have it both places? Not to take away @Nielk efforts and contributions. People are posting quicker than I can respond...
     
    Last edited: Feb 10, 2015
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  18. JayS

    JayS Senior Member

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  19. JayS

    JayS Senior Member

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    There's a ton more, but most are picking up either the HealthDay report (by the same guy who chose to interview Suzanne Vernon & Jaob Teitelbaum for his story yesterday) or the AP report by Lauran Neergard. No need to be redundant, I figure, and chances are following the NBC News report a little while ago that for a few hours some relatively minor, local news outlets will pick up one of those two. If I see anything relevant beyond those, I'll certainly post it here.
     
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  20. Kina

    Kina

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    Just to note, I have merged the two threads because it's better to have the information in one thread.
     
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