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How about we adopt the term MCIDS (Multiple Chronic Infectious Disease Syndrome)?

Discussion in 'Action Alerts and Advocacy' started by kday, Dec 1, 2010.

  1. kday

    kday Senior Member

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    I never really liked the terms CFS/CFIDS/ME, so I am going to be an early adopter of the term MCIDS. It was briefly proposed by a Lyme doctor (Dr. Richard Horowitz).

    I think a better term such as MCIDS can unite the many communities that have too much in common.

    Anyone with me, or am I just going nuts? :D
     
  2. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    I really like what it stands for because it is much more descriptive. The only hesitation I'd have is it starts with MC, and MC anything seems to get trivialized. I'd hate to go from one non-serious title to another.
     
  3. Timaca

    Timaca Senior Member

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    How about Infection Associated Chronic Disease Syndrome?
     
  4. CBS

    CBS Senior Member

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    Immunodeficiency CNS dysfunction (ICNSD) or



    Immune associated CNS dysfunction (IACNSD)?
     
  5. kday

    kday Senior Member

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    Timaca - I really like the name. The only problem is how do you say it easily? (IACDS)

    CBS - ICNSD and IACNSD are both hard to say as well.

    MCIDS (pronounced em-sids) is easy to say.

    You can take out the C and have MIDS (Multiple Infectious Disease Syndrome)

    Or you can have MIDIS (Multiple Infectious Disease and Immunodeficiency Syndrome). I personally like MIDIS (pronounced mid-ease). It's catchy.

    Also, while the names accurately reflect what's going on, I was looking for a name the general population could associate with. The average person doesn't know what the CNS is.

    When they hear the name they should think, wow, that really sounds serious. CFS/CFIDS/ME does not reflect how serious the disease is in my opinion. In fact, the names are mocked by the general population, and it is of my opinion the names have influenced some researchers into believing CFS is a psychosomatic condition.

    I think it would be considered unethical amongst the general population for a researcher to call a disease such as "Multiple Chronic Infectious Disease Syndrome" as psychosomatic, and I think it would scare away the less-than-moral researchers trying to promote that this is a psychosomatic illness (if they aren't scared away already).

    Most people don't even know or really understand what AIDS stands for. However, people have just associated it as the worst thing you could ever have since people can quickly die from it. The names CFS/CFIDS/ME will never gain respect from the general population in my opinion. It doesn't kill you quickly.

    I know there are many that don't like the name changed over and over again, but all 3 names are junk, and the non-descriptive acronym CFS is still the primary acronym used in the United States.

    We don't need the government coining the acronyms for us. With the internet, we have a loud enough voice to come up with a proper acronym ourselves. I think we now have the power to take control.

    The thread is open to more suggestions. What does everyone think of MIDIS?

    Again, I am also hoping to unite the communities that have a lot in common, and the word CFS probably drives people away from this forum. If fatigue is not the most prominent symptom, or if they have chronic infection(s), many people automatically think that they wouldn't have CFS associated illness.

    As strange as it sounds, I also think that a more "scary" acronym might provide more funding and research.
     
  6. Timaca

    Timaca Senior Member

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    Kday~ At present there is no proof that infections or immune dysfunction cause CFS. There is some evidence for association, but no proof of a casual link. So, you can't change a name until there is proof. I like MIDIS, and think that could be a good name, once the proof is there.

    Until then, Infection Associated Chronic Fatigue Syndrome or something similar is pretty safe as I do know some doctors that will go so far as to say that there is an association. And I've had enough lab tests to prove such an association, and enough antimicrobial treatment to know that that association exists.

    Along those lines, I've written a book (which is almost done) and all proceeds will go to various Infection Associated CFS organizations. Those organizations will be listed on my website as soon as my book is done. If you're interested see: www.whensomethingswrong.com. I intend to support Phoenix Rising with some of the proceeds. :)

    Best, Timaca
     
  7. George

    George waitin' fer rabbits

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    (day three, after the return from lunch) According to the CFSAC meeting we'll be going to ME (the original name of the illness dating back to 1933) / CFS (so that doctors won't be totally lost since the CFS name has been used for the last three decades. Then we will get renamed to something that reflects the XMRV aspect of the illness. Course that depends on what the XMRV get's named. (grins) Since XMRV isn't actually unique to humans the HGRV or HMRV or HMV may not be the route the central naming agency goes. Who know's we may get to keep the X. But the illness name will reflect the origin - in this case XMRV or what ever it get's named - it will reflect the chief problems which are neurological and immunological - So what ever they come up with will have at least NI" in it somewhere.

    I don't think we will have much say in the naming. But it's fun to come up with stuff.
     
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    We have no official say in the official naming. The health authorities are the only ones that get to decide, and the doctors follow the health authorities. They have no choice, either: they can only use the diagnostic tools that are provided to them (or invent a new descriptive disease entirely, as I hear some European doctors do). However, Dr. Mangan of the NIH is listening. It's because of us that he's changing to ME/CFS.

    Colloquially, however, we can say whatever we want. :) :big grin:

    I agree: CFS/CFIDS is doing us no good. ME is fine in the US (and actually describes at least one of the subgroups perfectly), but the term is maligned in the UK. I waffle whether we should stick to what should be a perfectly fine title of ME and thereby vindicate everyone, or whether it should be discarded because of the baggage. I think the UK/Europe people should have the most say in that.

    I disagree that we have to wait for a specific causation to pick a decent name. Many disease do not have an exact particular known causation. Others, like Guillian-Barr and pneumonia, can be caused by various infections. In fact, some diseases are named for a pathology which was later found to be incorrect, and the disease name was not changed but the disease remains mislabled.

    There is no reason under the sun why we cannot immediately have a respectable name designating one or more of the main pathological processes we know (or even suspect) to be going on.

    If we waited for an exact particular known causation, MS would still be "hysterical paralysis." Obviously, this is not an acceptable strategy. We know a good deal about the pathology, but we don't know the actual cause of MS (although there is evidence in the literature that it may be associated with a retrovirus, which could be causative). The disease title describes a pathology, not the cause.

    I like most of the suggestions. Pronounceability is a good consideration, though.

    I do think we should include something that indicates neurological involvement. It doesn't really matter whether the general public understands (who from the public knows what "sclerosis" or "erythematosus" mean, anyway?). We can spell out central nervous system if we need to. As long as news people know that this means actual physical nerves with dendrites, and not a "nervous complaint" (i.e. Beard-style neurasthenia... did you know that disease title originally meant they thought something was biologically wrong with actual physical nerves?)

    Aside from that, I kind of like MIDIS, except it sounds like a music file.
     
  9. kday

    kday Senior Member

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    If we want to be lazy, we can copy Japan:

    "Low Natural Killer Cell Syndrome" (LNKS)

    It's better than what we have.

    Remember, official names can be lost if nobody is using the offical name. So, yes we do have a voice when it comes to the name.

    Right now I am trying to decide whether I have MIDIS or LNKS.

    I have a new name Infection associated Neuroimmune Dysfunction Syndrome (INDS or INIDS), but I'm not sure if I like that one.
    Or if that is redundant it could just be Neuroimmune Dysfunction Syndrome (NDS or NIDS). Or does Chronic Neuroimmune Dysfunction Syndrome (CNIDS) make more sense?

    Or we can just call it AIDS type 2. Or that would be too extreme? (I'm kidding and don't mean to offend anyone).

    I'm waiting for a good Acronym I can use in my currently nonexistant signature. This is what you do when you don't have a job. :)
     
  10. lancelot

    lancelot Senior Member

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    MCIDS would work for an immune disease with no known cause or pathophysiology. MCIDS is much better than CFS/ME. However, this could also apply to HIV/AIDs before they found the cause and pathophysiology. But now we know a retrovirus, XMRV/MLVv could possibly be the cause of CFS/ME. if that is true, then MCIDS would be obsolete as the name would have to correspond to the infectious agent(retrovirus) and the immune system as the primary pathophysiology.

    As the retrovirus, HIV, is the cause of the disease, AIDS.....XMRV/MLV is the cause of _______(FILL IN THE BLANK). We are close to a real name because we now know the real cause!
     

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