Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Leonard Jason on the IOM name change

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Feb 16, 2015.

  1. Nielk

    Nielk

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    How Disease Names Can Stigmatise- by Leonard A. Jason

    http://blog.oup.com/2015/02/disease-name-chronic-fatigue-syndrome-me/

     
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  2. medfeb

    medfeb Senior Member

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    Dr. Jason posted a blog on the IOM recommendation for the new name
    http://blog.oup.com/2015/02/disease-name-chronic-fatigue-syndrome-me/

    How disease names can stigmatize
    By Leonard A. Jason February 16th 2015

    On 10 February 2015, the long awaited report from the Institute of Medicine (IOM) was released regarding a new name — Systemic Exertion Intolerance Disease — and case definition for chronic fatigue syndrome (CFS). Because I was quoted regarding this report in a New York Timesarticle, in part due to having worked on these issues for many years, hundreds of patients contacted me over the next few days.

    The reaction from patients was mixed at best, and some of the critical comments include:

    • “This new name is an abomination!”
    • “Absolutely outrageous and intolerable!”
    • “I find it highly offensive and misleading.”
    • “It is pathetic, degrading and demeaning.”
    • “It is the equivalent of calling Parkinson’s Disease: Systemic Shaking Intolerance Disease.”
    • “(It) is a clear invitation to the prejudiced and ignorant to assume ‘wimps’ and ‘lazy bums.’”
    • “The word ‘exertion,’ to most people, means something substantial, like lifting something very heavy or running a marathon – not something trivial, like lifting a fork to your mouth or making your way across the hall to the bathroom. Since avoiding substantial exertion is not very difficult, the likelihood that people who are not already knowledgeable will underestimate the challenges of having this disease based on this name seems to me extremely high.”
    Several individuals were even more critical in their reactions — suggesting that the Institute of Medicine-initiated name change effort represented another imperialistic US adventure, which began in 1988 when the Centers for Disease Control changed the illness name from myalgic encephalomyelitis (ME) to chronic fatigue syndrome. Patients and advocacy groups from around the world perceived this latest effort to rename their illness as alienating, expansionistic, and exploitive. The IOM alleged that the term ME is not medically accurate, but the names of many other diseases have not required scientific accuracy (e.g., malaria means bad air). Regardless of how one feels about the term ME, many patients firmly support it. Our research group has found that a more medically-sounding term like ME is more likely to influence medical interns to attribute a physiological cause to the illness. In response to a past blog post that I wrote on the name change topic, Justin Reilly provided an insightful historical comment: for 25 years patients have experienced “malfeasance and nonfeasance” (also well described in Hillary Johnson’s Osler’s Web). This is key to understanding the patients’ outrage and anger to the IOM.

    So how could this have happened? The Institute of Medicine is one of our nation’s most prestigious organizations, and the IOM panel members included some of the premier researchers and clinicians in the myalgic encephalomyelitis and chronic fatigue syndrome arenas, many of whom are my friends and colleagues. Their review of the literature was overall comprehensive; their conclusions were well justified regarding the seriousness of the illness, identification of fundamental symptoms, and recommendations for the need for more funding. But these important contributions might be tarnished by patient reactions to the name change. The IOM solicited opinions from many patients as well as scientists, and I was invited to address the IOM in the spring regarding case definition issues. However, their process in making critical decisions was secretive, and whereas for most IOM initiatives this is understandable in order to be fair and unbiased in deliberations, in this area — due to patients being historically excluded and disempowered — there was a need for a more transparent, interactive, and open process.

    So what might be done at this time? Support structural capacities to accomplish transformative change. Set up participatory mechanisms for ongoing data collection and interactive feedback, ones that are vetted by broad-based gatekeepers representing scientists, patients, and government groups. Either the Chronic Fatigue Syndrome Advisory Committee (that makes recommendations to the Secretary of US Department of Health and Human Services) or the International Association of ME/CFS (the scientific organization) may appoint a name change working group with international membership to engage in a process of polling patients and scientists, sharing the names and results with large constituencies, and getting buy in — with a process that is collaborative, open, interactive, and inclusive. Different names might very well apply to different groups of patients, and there is empirical evidence for this type of differentiation. Key gatekeepers including the patients, scientists, clinicians, and government officials could work collaboratively and in a transparent way to build a consensus for change, and most critically, so that all parties are involved in the decision-making process.
     
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  3. worldbackwards

    worldbackwards A unique snowflake

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    First sensible thing I've seen on this all day.
     
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  4. shannah

    shannah Senior Member

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    Once again, the Professor pulls through for us.
     
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  5. Ember

    Ember Senior Member

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    IOM criteria that fail to define ME shouldn't be called ME.
     
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  6. CBS

    CBS Senior Member

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    I'm unsure of what SEID is and I suspect that its use (or hopefully non-use) will likely contribute to additional conflict/confusion when it applied to large populations over time. I do not foster any illusion that a large majority of physicians will bother with more than the one page algorythm when determinign whether or not a patient suffers from it.

    I have ME. I was orginally diagnoed with CFS (1994). I knew that was a crock as it was, and remains, a poorly defined (Fukuda) entity that shed no light on my experience and no reasonable guidance as to treatment. Yes, I do have well documented CNS involvement. And yes, it is easier to defend ME as an encephalopathy than as an "...itis." And while myalgias were a significant issue in my first four years with this disease, they are not an issue at this time. That said, these are trivial issues in the arena of medical nomenclature. The IOM's magic wand will not make my ME disappear and their dumed down SEID diagnostic criteria will do nothing to hasten a better understanding of my ME or anyone else's disease.

    Dr. Jason understands, better than anyone (Dr. or patient), the significant impact that seamingly minor changes to Dx criteria can have. I suggest that patients listen to Dr. Jason and that we follow Dr. Clayton's advice to "Act Up" - against the supposed marginally better name and that we insist upon well validated diagnostic criteria.

    We also need to demand that HHS stop trying to placate us with crumbs. To the federal governent, $1 million is NOTHING! $6 million is NOTHING! Not a day goes by without glaring reminders in the news about how little the governemnt really cares about me and about you! Just today an article about the drop in oil prices noted that nearly 500 wells (at a cost of $9 million dollars a well) had been shuttered this past year. $4.5 billion dollars worth of equipment taken out of service in just the last year. The Feds spend $4 Billion a year on AIDS. At $6 million a year and nothing for a properly validated study it is clear where the governemnt's priorities lie. You're a fool if you think they give a damn. At this rate, you will spend spend the rest of your life out of work, missing many of life's significant milestones and constantly feeling like shit. Then you'll die of some complicatin of the disease or 1 in 5 of us will be so overwraught with pain and dispair, we'll kill ourselves.

    Sadly, crumbs keep the lease effected amongst from wanting to rock the boat, always hoping deep down that someone really cares.
     
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  7. Ecoclimber

    Ecoclimber Senior Member

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    I guess I'm more pragmatic. With all due respects to Leonard Jason and irregardless of his highly altruistic comments from Jason, I do sense a politically naivete to the political reality of the situation.

    Remember: This is ONLY a temporary name until research can narrow the disease more specifically which would require additional research funding from the NIH.

    The big question for me is the treatment options in the physicians toolkit. This will indicate whether there is a big shift in policies within the CDC and the NIH in reconsidering the serious nature of this disease.

    Jason makes the following statements in his blogpost
    ..."Either the Chronic Fatigue Syndrome Advisory Committee (that makes recommendations to the Secretary of US Department of Health and Human Services)"...

    The patient community already tried this approach and they refused the recomendations from this committee. It really is a useless organization given the accomplishments over the last ten+ years.

    ..."or the International Association of ME/CFS (the scientific organization) may appoint a name change working group with international membership to engage in a process of polling patients and scientists, sharing the names and results with large constituencies, and getting buy in — with a process that is collaborative, open, interactive, and inclusive."...

    ME/CFS researchs/scientist already did this. It was called the CCC and ICCC. It was rejected outright and the petition by the same along with the signature of patient advocates was outright rejected.

    Since the emails under the FOIA indicate a confusion even among the higher ups within HHS on the differences between the P2P and the IOM panels and whether you need both, are the same, mutually exclusive or inclusive or one over rules the other, it will be interesting how this major cluster f@#$ or fubar actually is resolved.

    Ellen Wright Clayton mentioning “I think this gives advocates a tool to “Act Up”. In all reality is there 'political will' within the patient community when all that can be mustered up at any one time, were the same group of fried-out patients involved in advocacy work and a handfull of patients actually protesting out of supposedly a million patients?

    If the outcome is what many fear, there is no way to change the process unless you force a change through legal process. This will unlikely to happen given the Gulf War veterans reluctance to do so after their name change.
     
    Last edited: Feb 16, 2015
  8. Nielk

    Nielk

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    So what are you saying #Ecoclimber? We should just bury our heads in the sand and let HHS rape us?
     
  9. Yeah it's just another bureaucratic BULLSHIT ring-around as I said it would be!

    This is how you bury things: drown 'em in bureaucratic CRAP
    For example, see in the UK, the way they buried the report on the lies over the Iraq war, and have done everything they can to deny, then control huge scale of child abuse by powerful government figures.
    Standard Operating Procedure: death by bovine faeces!
     
  10. Snow Leopard

    Snow Leopard Hibernating

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    We need a name change working group as proposed by Jason, but participation needs to be international (including non English speaking countries), rather than merely US based.
     
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  11. Ecoclimber

    Ecoclimber Senior Member

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    @Nielk
    Does HHS even have to accept the name? What if they reject it and come up with their own definition via P2P? The report recommends another name change in 5 years.

    What about advocacy and social media work to raise funds from private foundations and advocacy work toward Pandora or the CAA to fund Lipkin's mircrobiome research project?

    Why not wait and see what name if any, that HHS actually decides upon between the P2P and IOM and what treatment protocol is in the professional tookit? Are they required to accept the entire IOM report? There were over nine reports from the IOM over a ten year period before the Veterans Administration finally accepted one they liked for the Gulf War Veterans.
     
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  12. Nielk

    Nielk

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    I have no idea what the next step is or whether the HHS will adopt it. They certainly invested in a wide range media blitz to the world as well as publishing in JAMA and the annals. I guess it's only a recommendation and HHS as the sponsor of the contract can choose to do whatever they want. It would be some waste of a million dollars though if they do not adopt it.

    As far as the P2P, their charge was not to come up with criteria or a name.

    Private foundations will never raise the hundreds of millions of dollars needed for adequate research that is required. Other similarly devastating diseases do not have to rely solely on private funding, why should we?
     
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  13. Iquitos

    Iquitos Senior Member

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    It was a waste of a million dollars anyway. To come up with a "temporary" name further confuses the issue(s). It would be pragmatic and logical to just leave the name M.E., repealing the $5 million disinformation campaign the CDC did when it changed the name to CFS, and leave the door open to refine it "within the next 5 years."

    Changing the name has raised huge dust clouds and I can't help but wonder if some of those involved planned on that. Look at all the energy that is being expended (exerted, if you will) on this stupid new name when all who are interested in improving the situation already knew about the CCC and the ICC.

    It's all more "running in place" while pretending to be sprinting.
     
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  14. Nielk

    Nielk

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    We have been using the hybrid ME/CFS. In addition, we have been using the phrase "also known as Myalgic Encephalomyelitis". M.E. has been recognized by WHO and has an ICD code. Why do we have to reinvent the wheel as a temporary name for five years?
     
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