The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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What do you think of the IOM's new name for ME/CFS? VOTE!

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

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What do you think of the IOM's new name for ME/CFS: SEID

Poll closed Mar 12, 2015.
  1. Better than the status quo, but I wouldn't endorse it myself

    27 vote(s)
    16.9%
  2. Better than the status quo, patients should get behind this

    32 vote(s)
    20.0%
  3. No better than the status quo (most reseachers/clincians use CFS, occasionally ME/CFS)

    19 vote(s)
    11.9%
  4. A waste of time

    58 vote(s)
    36.3%
  5. Better than the status quo, but I'm unsure at this time whether I would endorse it myself.

    24 vote(s)
    15.0%
  1. Aurator

    Aurator Senior Member

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    Many thanks, doc, for giving such a frank account of your own experience.

    Like you I'm vaguely hopeful that the IOM report and the change of name to SEID will lead to greater enlightenment. SEID may not be the best imaginable choice, but it's arguably better than CFS, and I respect the IOM's reasons for choosing the new name.

    Before I got it myself, I too was sceptical about the status of ME/CFS - a result of the combined effects of irresponsible press coverage of some of the dubious science surrounding the disease and my almost complete lack of personal acquaintance with sufferers. I have become wiser of course, though not without becoming a little sadder.
     
    BurnA, Valentijn, MeSci and 3 others like this.
  2. Sean

    Sean Senior Member

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    Keen might be putting it a little strongly. More a matter of seeing it as the best (or least worst) of the plausible options on the table.

    No disrespect at all to MEA & Dr Shepherd, and their supporters (of whom I am one), and I am not dismissing these results. But it is also quite likely that responses to any survey by MEA about the name are going to be naturally (and understandably) biased towards the name MEA have used and advocated for decades – ME, in some form. Like all surveys on this so far, it must be taken with a grain of salt.

    One thing I think we can all agree upon is that CFS has to go.

    (FWIW, I could live with some form of ME name, with my preference being myalgic encephalomyelopathy. But if the medical profession will not wear an ME name, then it is a lost cause. And they seem persistently not keen on it.)
     
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  3. SOC

    SOC Senior Member

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    Wasn't that poll only for UK residents? In which case shouldn't your comment be amended to "how unpopular it really is in the UK"? Which may tell us something.....
     
    Aurator, MeSci, Butydoc and 2 others like this.
  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I agree with this. I am not keen on SEID. But it seems meant as temporary, and hopefully it will be better in a few years. Dr. Edwards said it's not uncommon to have lots of name changes, so I am not bothered by that. They can fix PubMed with a bit of computer magic, so old research will come up under new names. (maybe computer magic can also make Oxford, etc., stop coming up? as it was never this)

    I am keen on moving away from CFS.

    The powers that be said they didn't like ME. I think it's a bit silly of them to insist a name be strictly accurate when so many other disease names aren't accurate and this one is already coded, but I think it's worth more to fight for stuff we can get more leverage out of (like money) than to fight over the title (to be honest, I have never thought the name is the most important point there is: once we dump "fatigue"; everything else can be fixed with money, research, and education, if it's all used well).
     
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  5. Sean

    Sean Senior Member

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    Or adds a bright red warning sign:

    Here be demons.

    :devil::devil::devil:
     
    Roseblossom, Valentijn, Sasha and 3 others like this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I was sceptical too, but not to the point of disbelieving people - more what I hope is a 'healthy scepticism'. I have a habit of weighing up pros and cons before coming to a decision or action.

    So:
    • If I believed someone and they weren't really ill, it wasn't really a big deal.
    • If I disbelieved someone and they were really ill, that would be unkind, cruel, hurtful and potentially harmful.
    That made it quite an easy decision - to err on the side of kindness.
     
    Sidney, alkt, Jennifer J and 3 others like this.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Yes, after reading the many good points that people have made, I have changed my mind re the poll at the top of this thread. I voted 'a waste of time' partly due to not fully understanding what all the time and money had gone into, thinking that it had just been spent on a pointless 'rebranding' exercise, as has become common in the UK, with PR firms being paid absurd amounts of money to come up with new names and logos when a school competition could have done better.

    I had not seen the report, which must have taken the bulk of the time and money.

    I also preferred ME, before discovering that a significant proportion of sufferers do not have myalgia.

    If I could change my vote now, I would choose one of the 'Better than the status quo' options.
     
    simeyss, Kati, Dolphin and 2 others like this.
  8. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    I've referenced WHO policy on the use of eponyms in the naming of diseases/disorders earlier in this thread.

    In May, WHO released a media release on disease naming (apologies if it has been posted elsewhere on the forum). It is mostly in relation to infectious diseases but may translate to other diseases:

    http://www.who.int/mediacentre/news/notes/2015/naming-new-diseases/en/

    WHO issues best practices for naming new human infectious diseases

    Note for the media

    8 May 2015 | GENEVA - WHO today called on scientists, national authorities and the media to follow best practices in naming new human infectious diseases to minimize unnecessary negative effects on nations, economies and people.

    “In recent years, several new human infectious diseases have emerged. The use of names such as ‘swine flu’ and ‘Middle East Respiratory Syndrome’ has had unintended negative impacts by stigmatizing certain communities or economic sectors,” says Dr Keiji Fukuda, Assistant Director-General for Health Security, WHO. “This may seem like a trivial issue to some, but disease names really do matter to the people who are directly affected. We’ve seen certain disease names provoke a backlash against members of particular religious or ethnic communities, create unjustified barriers to travel, commerce and trade, and trigger needless slaughtering of food animals. This can have serious consequences for peoples’ lives and livelihoods.”

    Diseases are often given common names by people outside of the scientific community. Once disease names are established in common usage through the Internet and social media, they are difficult to change, even if an inappropriate name is being used. Therefore, it is important that whoever first reports on a newly identified human disease uses an appropriate name that is scientifically sound and socially acceptable.

    The best practices apply to new infections, syndromes, and diseases that have never been recognized or reported before in humans, that have potential public health impact, and for which there is no disease name in common usage. They do not apply to disease names that are already established.

    The best practices state that a disease name should consist of generic descriptive terms, based on the symptoms that the disease causes (e.g. respiratory disease, neurologic syndrome, watery diarrhoea) and more specific descriptive terms when robust information is available on how the disease manifests, who it affects, its severity or seasonality (e.g. progressive, juvenile, severe, winter). If the pathogen that causes the disease is known, it should be part of the disease name (e.g. coronavirus, influenza virus, salmonella).

    Terms that should be avoided in disease names include geographic locations (e.g. Middle East Respiratory Syndrome, Spanish Flu, Rift Valley fever), people’s names (e.g. Creutzfeldt-Jakob disease, Chagas disease), species of animal or food (e.g. swine flu, bird flu, monkey pox), cultural, population, industry or occupational references (e.g. legionnaires), and terms that incite undue fear (e.g. unknown, fatal, epidemic).

    WHO developed the best practices for naming new human infectious diseases in close collaboration with the World Organisation for Animal Health (OIE) and the Food and Agriculture Organization of the United Nations (FAO), and in consultation with experts leading the International Classification of Diseases (ICD).

    The new best practices do not replace the existing ICD system, but rather provide an interim solution prior to the assignment of a final ICD disease name. As these best practices only apply to disease names for common usage, they also do not affect the work of existing international authoritative bodies responsible for scientific taxonomy and nomenclature of microorganisms.

    Notes to editors
    The final name of any new human disease is assigned by the International Classification of Diseases (ICD), which is managed by WHO. ICD is used by doctors, nurses, researchers, health information managers and coders, policymakers, insurers and patient organizations around the world to classify diseases and other health problems and record them in a standardized way on health records and death certificates. This enables the storage and retrieval of diagnostic information for clinical, epidemiological and quality purposes. These records are also used by WHO Member States to compile national mortality and morbidity statistics. Finally, ICD is used for reimbursement and resource allocation decision-making by countries.

    Media contacts:
    Christian Lindmeier
    Telephone: +41 22 791 19 48
    Mobile: +41 79 500 65 52
    E-mail: lindmeierch@who.int

    Olivia Lawe Davies
    Telephone: +41 22 791 12 09
    Mobile: +41 79 475 55 45
    E-mail: lawedavieso@who.int
     
    KIO, CFS_for_19_years, Denise and 6 others like this.
  9. jimells

    jimells Senior Member

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    That's really rich coming from the original Dr. Let's-Redefine-A-Disease-Out-Of-Existence. He's certainly an expert on intended negative impacts.

    He should be defending himself in court instead of pontificating on disease names.
     
  10. dannybex

    dannybex Senior Member

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    I was fortunate to attend a talk by David Bell M.D. last Saturday here in Seattle. He talked briefly about the proposed name change.

    At first he wasn't thrilled about SEID, but after awhile he decided that it might not be so bad, mainly because it emphasizes what he feels is one of the most important symptoms of the illness, "exertion intolerance", and the related PEM.
     
    Last edited: Jun 12, 2015
    Sidney, beaker, Simon and 6 others like this.
  11. Denise

    Denise Senior Member

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    Interesting.
    I hope you will share more about his talk.
     
    beaker likes this.
  12. dannybex

    dannybex Senior Member

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    I'm trying to put together some notes, but doing poorly right now. It was videotaped and at some point will be available online. I or someone from our local group will be sure to let people know. It was a great talk.
     
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  13. Denise

    Denise Senior Member

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    Many thanks!
     
    dannybex likes this.
  14. KIO

    KIO

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    WOW! ... :-/
     
  15. KIO

    KIO

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    I read in a ME forum in Czech:
    the acceding countries to WHO can not deny the existence of diseases classified by WHO. They risk processes.
     
  16. Dolphin

    Dolphin Senior Member

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  17. picante

    picante Senior Member

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    I understand that you have to use machine translation, so this is just to help: "processes" would be legal action of some sort.

    And that's very interesting. The WHO can sue. (That's sounds like something from Dr. Seuss, LOL.)
     
  18. Elika

    Elika

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    I am a new member. I believe that ME more accurately defines/lists the various symptoms of this disease. I am symptomatic even without an obvious exertion of such as standing, walking, talking, etc. This new label seems to minimize the disorder.
     
    lauluce likes this.

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