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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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A name change?

Discussion in 'Action Alerts and Advocacy' started by Snow Leopard, Mar 14, 2011.

  1. Snow Leopard

    Snow Leopard Senior Member

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    Isn't it about time we asked for a name change?

    Studies by Dr Jason and others have found that the name "Chronic fatigue syndrome" has a substantial effect on how patients are treated. The problem is that this name was invented primarily by psychiatrists and the name itself implies too much about the disease. Likewise with ME.


    Other syndromes often have more neutral names. Guillain–Barr syndrome for example.

    So why not change the name of Chronic Fatigue Syndrome to something more neutral, like Cheney-Peterson disease or similar?
  2. WillowJ

    WillowJ Senior Member

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    of course it's time. and in fact we've been asking for a name change for ages.

    the trouble is
    *that naming after a person has fallen out of style (therefore isn't likely to be accepted by the medical community),
    *that everyone doesn't agree on what particular new name, and
    *that CDC (or some other health authority but I think it's them) is in charge of the ICD where disease titles are made official, unless we could petition straight to WHO but they already call us ME or PVFS (CFS is not a WHO-approved title, although it does appear in the index and they've been forced to reference it both to ME/PVFS and to neurasthenia/fatigue syndrome because of improper usage).

    Let's please don't leave "syndrome" in the title. "Disease" is fine if we need a neutral label.

    If we're not content with Myalgic Encephalomyelitis, how about Immunodeficient Encephalitis? Or Immunodeficient Dysautonomic Encephalitis (or Encephalomyelitis)?

    http://www.cfs-healing.info/name-change.htm
  3. SOC

    SOC Moderator and Senior Member

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    How about Idiopathic Neuro-Immune Disease (INID). The acronym is even pronounceable. :D

    Last time we had this discussion someone suggested WTF, which I have to admit describes it better than most other names I've heard. ;)
  4. insearchof

    insearchof Senior Member

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    Love that Sickofcfs! Great points Willow! CDC, after 25 yrs+, recognizes that ME (as recognized in the UK) is not CFS and on a medical definition basis this is very true, so I agree. Therefore the alternative name you propose (not supported by the current definition of cfs)is not likely to be considered. There is even some suggestion that there is no evidence of encephalitis in ME (which is factually and historically incorrect).

    In light of XMRV and all that is going on there, I dont think the timing for this idea is good.
  5. Emmanuelle

    Emmanuelle

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    LOL-- I love WTF ... !

    We definitely need a new name.

    And YES-- please, lets leave SYNDROME out or it. It sounds like something vague and imaginary ...
  6. WillowJ

    WillowJ Senior Member

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    Idiopathic is just as bad as "syndrome", "-pathy", and "fatigue". The symptoms are not of unknown cause, which is what idiopathic implies. We don't necessarily know the ultimate cause, but we do know some underlying pathology, so it's not idiopathic (and even if it were, putting that in the name would NOT help us get taken seriously)
  7. Sean

    Sean Senior Member

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    Difficult issue. The name 'Chronic Fatigue Syndrome' is a serious problem, and that name has to go at some point. Chronic is okay; fatigue is highly selective, restrictive and misleading; and syndrome is too vague (though it has some legitimacy, eg Down's Syndrome).

    The 'itis' part of ME is still controversial (rightly or wrongly). We have to be very careful about accuracy. And we can't keep changing names, so the next change better be a very good one that sticks.

    The naming issue might not be resolved until (and unless) there is an widely accepted primary organic finding. (Current possibilities include delayed post-exertional recovery, and spinal fluid composition.)

    I think we are seeing some shift back towards also using ME in more formal settings, either as CFS/ME, or sometimes ME/CFS. (Yes, I know all the political arguments over this, especially how CFS/ME may be used as a cover for psych CFS. But at least there is a shift in language away from excluding the term ME.)

    Seems to me the best we can make of the current bad situation to be keep moving back to ME in both formal and informal debates. ME has the advantage over other alternatives of already being used in both the peer reviewed literature, and the ICD.
  8. SOC

    SOC Moderator and Senior Member

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    I thought "idiopathic" meant that we don't know the cause, and we don't, so idiopathic seemed reasonable to me.... I was thinking along the lines of "Atypical MS" or "Atypical ALS". If there is agreement (is there?) that this is a neuro-immune disease, we can claim that much credibility. However, it's certainly true that once the cause is known, we'd have to change the name again, which would be problematic.

    In all seriousness, we're not likely to get an official name change any time soon. Because we don't know the root cause, a new name would have to describe, at the least, a consistent, agreed-upon universal set of symptoms. I ended up at "Neuro-Immune Disease" as the best overall descriptor of our symptoms, but perhaps someone can think of something better.
  9. WillowJ

    WillowJ Senior Member

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    lots of diseases get a name and then get more precise pathology, and don't require a further name change.

    Myalgic Encephalomyelitis is perfectly fine even if (there is some disagreement on this) it didn't describe everyone.

    Whatever pathology is currently known, such as neuro-immune disease, is perfectly acceptable as a basis for a permanent name. No disease changes names every time they refine their pathology. The main name changes observed in medicine are from the name of a scientist to a pathology name, or from a derisive name to a pathology name.

    Mulitple Sclerosis was named for a pathological observation, not an ultimate pathology. It is just as stupid to stick with CFS as it would have been to stick with "hysterical paralysis" until finding an ultimate pathology. There are many diseases which have been much better studied for which we still do not know an ultimate causal pathology.
  10. WillowJ

    WillowJ Senior Member

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    :oops: didn't mean to end the conversation... sorry for saying "stupid"; I didn't mean to apply that to anyone here. It just doesn't make sense to me why we are letting CAA and CDC tell us we need ultimate causal pathology; no other disease under the sun has needed that to get a proper name.

    what we might need is an Act of Congress--that's what Multiple Sclerosis needed in order to abandon "hysterical paralysis"
  11. camas

    camas Senior Member

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    Does this signal that we might finally be making a bit of progress on the name change issue? It's the first "official" (albeit slight) deviation from "Chronic Fatigue Syndrome" I've seen in 20+ years.

    http://orwh.od.nih.gov/CSF 2011/CFS_home.htm
  12. laura

    laura Senior Member

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    Let's Name Ourselves Now

    It seems to me that we shouldn't wait for the medical establishment to name us. I think if we as a patient community decided on a name and started using it, then the medical establishment might eventually follow us. We are, after all, in the age of the internet, facebook, twitter, etc. As a group we can have a lot of influence.

    And even if it is "out of favor" by the powers that be, I like the idea of us naming the illness after someone. Like Hillenbrand's Disease. Or Hillenbrand's Syndrome. It would be immediately recognizable to the public at large -- "oh, she has what that writer has." And it solves the problem of needing to wait for research to progress before we are taken seriously...
  13. WillowJ

    WillowJ Senior Member

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    wow, Mangan's website is up! sweet!

    Camas, yes, at the CFSAC meeting the patient groups were wearing t-shirts and carrying signs that said ME/CFS, and we were bombarding officials with faxes with various messages finishing with "what have you done for ME/CFS today" and Dr. Dennis Mangan pulled aside some people at the CFSAC meeting and asked to talk to them, took input, answered emails from the broader community... and began using ME/CFS as the title. I'm very happy to see him use "encephalomyelitis" (as opposed to "encephalopathy") for the ME portion.
  14. camas

    camas Senior Member

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    Thanks for the background, WillowJ! I wondered what had brought about this change in terminology.

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