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Suggested new name for ME/CFS

Discussion in 'Action Alerts and Advocacy' started by Sparrow, Apr 3, 2014.

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What do you think about the option of calling our illness Hennessy's Disease instead of ME/CFS?

  1. I couldn't accept that and would fight to get the name changed again.

    8 vote(s)
    32.0%
  2. I would be disappointed with the name, but probably wouldn't fight against it.

    6 vote(s)
    24.0%
  3. I wouldn't care much whether the name changed to that or not.

    2 vote(s)
    8.0%
  4. I would be comfortable supporting that name if it was chosen.

    2 vote(s)
    8.0%
  5. I would be pleased to have our illness named that so that we could move on to other issues.

    7 vote(s)
    28.0%
Multiple votes are allowed.
  1. taniaaust1

    taniaaust1 Senior Member

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    Maybe cause they do not know what ME is they could make an exception to the rule. That wouldnt at all be unreasonable. Rules are often broken when there is good reason to do so. There would be no arguement at all that that outbreak is the most well known one.
    Last edited: Apr 5, 2014
    justinreilly likes this.
  2. taniaaust1

    taniaaust1 Senior Member

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    Can a mod help someone change a vote? I voted wrongly as I read it wrong.

    I voted for "I would be comfortable supporting that name if it was choosen" as I thought it said I would be uncomfortable supporting that name if it was choosen. (so that is supposed to only currently have 1 vote and not 2).

    My vote should should of been that I would be disappointed in the name but wouldnt fight against it.
  3. SOC

    SOC Moderator and Senior Member

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    Who knows? :) However, if history is any predictor, I doubt anyone will bend any rules for us.
  4. Forbin

    Forbin Forbin

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    Here's one I haven't heard before: "Encelphalitis Myalgica Epidemica."

    Seems to be from a German article in 1958.

    EME or EM would have the advantage of not being a pronoun. Just throwing out ideas... :)

    http://www.ncbi.nlm.nih.gov/pubmed/13568694
  5. Purple

    Purple Bundle of purpliness

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    With regards to the name being medically accurate and descriptive - I guess they didn't think of it when they named lupus ;) I doubt many doctors assume their lupus patient is a wolf, just from reading them name of the illness and understanding the Latin meaning. (Though I have read the name lupus is a lateral name - meaning that the disease 'devours' the person as a wolf would devour its victim.)

    With regards to 'encephalomyelitis' - this means simply 'inflammation of the brain and spinal cord'. It doesn't say how much inflammation or whether it's rare or fatal. It just means inflammation of the central nervous system, that's all. And it is something that appears to happen in many neurological diseases, not just ME. So I suspect that encephalomyelitis is both correct and just ONE of the signs of the disease we know as ME.
    Sidereal, Kati and Nielk like this.
  6. SOC

    SOC Moderator and Senior Member

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    Nope. :) Or Hodgkin's or Parkinson's or cancer, for that matter. That was then, this is now.

    It's just that ambiguity of name that led to the decision to use literal descriptive names. We don't have to like it, but we have to deal with the reality of it if we're going to be taken seriously when suggesting a new name. No point in suggesting names that have no hope of being accepted.

    Eta: I looked it up, just out of interest. The name lupus appears to have originated in the 12th century. Much longer ago than I guessed.
    WillowJ and Purple like this.
  7. taniaaust1

    taniaaust1 Senior Member

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    Maybe it was that stupid naming rule thing which caused an illness to be given the name "chronic fatigue syndrome"
  8. SOC

    SOC Moderator and Senior Member

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    I wouldn't call it a stupid rule. It makes a lot of sense. But yes, the rule may have been in place when fools selected one, and probably not the most significant, feature of the illness as a name to deliberately downplay the seriousness of it.
  9. Forbin

    Forbin Forbin

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    My impression is that they chose "Chronic Fatigue Syndrome" in a deliberate effort to be vague. They had to come up with a new name because they had just been burned by "Chronic Epstein-Barr Virus Syndrome," particularly Strauss, whose early work had pointed to EBV. When that connection was supposedly "disproven," I think there was a desire to come up with a name that could not be disproven - hence the adoption of a "safe" name like CFS at the expense of any more specific name (like M.E).which could possibly turn out to be incorrect.

    Basically, a case of "once bitten, twice shy."

    Perhaps they were also remembering (and regretting) the inaccurate specificity of "Gay-Related Immune Deficiency," or GRID.
  10. alex3619

    alex3619 Senior Member

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    Emmmmm ... .are you sure? Someone will still make fun of it. Its the attitude of people that is the primary issue.

    I hadn't read that name either. Nice find.
    peggy-sue likes this.
  11. redviper

    redviper

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    I think they chose the term "Chronic Fatigue Syndrome" because it fit with their strategy of dividing the opposition (us), as well as immediately dismissing the severity of our illness. Expanding the definition of the disease to include lots of patients with depression just created chaos and additional negative perceptions about our illness. I have no doubt that the name was likely selected maliciously to benefit insurance companies.
    golden and peggy-sue like this.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Well, there is proof that one of CDCs namers had financial protection of insurance companies as a main goal. In Osler's Web, Hillary Johnson recounted that in response to a FOIA request she got the text of an email from one naming committee member to another stating that he favored CFS as a name because it would prevent "chronic disbursements" from insurers to patients.
    NK17, SOC, Nielk and 1 other person like this.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Keep in mind that in the US that as a rule the medical and government communities do not consider there to be an "ME" apart from "ME/CFS." I think Derek Enlander's saying ME and CFS are different was the first time I have ever heard that distinction made in the medical or governmental spheres in the US including by Enlander, except for the Social Security Ruling that just came out and CDC & CAA having said in a CME (which they have since edited out because of patient protest) that ME is not a valid name for "CFS" since ME exhibits encephalitis and occurs in epidemics.

    And I have never heard of anyone ever being diagnosed with ME or ME/CFS in the US. So, if you say to the IoM committee that you don't want "CFS" to be renamed "ME" they would take that to mean there is one illness, now called "CFS" and you don't want it renamed ME and that there is no illness known as ME. So, I suggest you don't say to them you don't want "CFS" renamed ME.
    SOC likes this.
  14. wastwater

    wastwater Senior Member

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    Was it some ME/cfs group that suggested Encephalopathy.Ive started calling mine suspected problem with dealing with EBV due to chromosome 6 fault.(I like NIDS)
    Last edited: Apr 6, 2014
  15. alex3619

    alex3619 Senior Member

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    @justinreilly, the CDC appears to be hypocritical on the ME vs. CFS nomenclature. On the one hand they acknowledge ME is different, and have for a long time, and yet continue to treat them as the same. This is more likely political than scientific, to placate some of us and yet do nothing.
    WillowJ, NK17, Nielk and 1 other person like this.
  16. Forbin

    Forbin Forbin

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    FWIW, I think that quote comes from the 5th paragraph of this 10/20/09 New York Times op-ed by Hillary Johnson. I scanned Osler's Web on Amazon for "disbursement" and couldn't find anything.

    http://www.nytimes.com/2009/10/21/opinion/21johnson.html?_r=0
    justinreilly likes this.
  17. N.A.Wright

    N.A.Wright Senior Member

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  18. N.A.Wright

    N.A.Wright Senior Member

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    Constraints on and Possibilities for elements of the name:

    1. Syndrome – advantage: allows a listing of symptoms without having to have defined cardinal symptoms which would exclude patients that future research may identify as having the same underlying cause of illness.

    - disadvantage: allows potentially overly broad interpretation and is seen (erroneously) to bespeak a psychiatric condition. This latter point is unlikely to be of concern to the IOM panel.

    2. Disease – advantage/disadvantage: probably neutral, however it does imply known pathology, so that even where causation is unknown, the term disease would be limiting to testable biology. This could be a problem in an illness with a cyclical/remitting process with someone having ‘the disease’ one month, but not the next.

    3. Chronic – advantage: declares there is ongoing illness, even where a remitting course is in play.

    - disadvantage: requires a criterion of time elapsed before diagnosis, contrary for example to the ICC proposal.

    4. Myalgic – advantage: symptom easily explicable by patient and observable in primary care.

    - disadvantage: common to many health conditions and perhaps dismissable as not serious.

    5. Encephalomyelitis – advantage: definitive of specific pathology regarded as associated with serious health impacts.
    - disadvantage: not easily testable, not communicable by patient, and involvement of the spinal cord (as opposed to exterior ganglion ?) lacking evidence.

    6. Encephalitis - advantage: definitive of specific pathology regarded as associated with serious health impacts.
    - disadvantage: not easily testable, not communicable by patient, may be considered to have known specificity and judged not to apply to M.E patients.

    7. Encephalopathy - advantage: definitive of specific pathology regarded as associated with serious health impacts.
    - disadvantage: not easily testable, not communicable by patient, may be considered lacking in specificity.


    Applying a line of least resistance to the above might lead to: Chronic Myalgic Encephalopathy Syndrome.
    NK17, Cheesus and Firestormm like this.
  19. NK17

    NK17 Senior Member

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    I think Myalgic Encephalopathy is a fair "compromise".

    If and when the encephalomyelitis part will be proven I'll still be able to stand by the acronym that by that time I'll have had tattooed.
  20. SOC

    SOC Moderator and Senior Member

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    Since encephalopathy includes any disorder of the brain including those causing mental illness, I still prefer the more specific encephalitis -- inflammation of brain tissue. I think we have enough evidence for that. We don't yet have sufficient evidence for encephalomyelitis -- inflammation of myelin in the nervous system.

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