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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

Okay so can we PLEASE change the STUPID name to something else NOW???

Discussion in 'General ME/CFS News' started by Stone, Jun 23, 2010.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Someone was using RIM- Reeves Illness Melange for the Reeves definition. Though it was very appropriate.

    Someone here asked about the Japanese name- it is LNKS pronounced "Links" for Low NK cell Syndrome.
     
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree 100%.

    Even Klimas and many other CFSAC members call it Chronic Fatigue which is totally unacceptable.

    they used to call ME "poor man's AIDS" in Australia.
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    ME applies in 100% of cases, especially if you allow ME to be Encephalopathy as well as or instead of encephalomyelitis. The encephalomyelitis probably applies in 100% of cases anyway, we just can't detect it yet with current technology. Only 80% of MS patients have sclerotic plaques on MRI, but noone says you can't call it MS and have to still call it 'hysterical paralysis'.
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    lots of cancers are named after discoverers including Burkitt's lymphoma which ME patients get. It's generally considered a huge honor to have a disease named after you. I do see what you mean though and of course we could always change the name if someone doesn't like it. The only substantial negative i could see with naming it after a hero is that so many worthy people would be left out and it doesn't make sense to call it a long multi name official name.

    Mikovits is a hero, but i would prefer Peterson-Cheney or Ramsay's Disease as they were there at the beginning and suffered for years and years to help us. Others may like Whittemore, Mikovits, Hyde, Nightingale, DeFreitas, Bell, Iverson or Klimas (although her never-ending use of 'chronic fatigue' and obliviousness to the importance of nomenclature would make this a bit ironic). Use your favorite hero's name- just don't call it "CFS".
     
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    XMRV is definitely not DeFreitas Retrovirus ("CAV"). For one thing XMRV is a gamaretrovirus which is a C-type and CAV is not a C-type. There are numerous other differences which WPI has written on either their website or facebook.

    Also see below thread.
    http://www.forums.aboutmecfs.org/sh...CFS-Study&highlight=defreitas 1991 retrovirus
     
  6. V99

    V99 *****

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    How about RCP disease, as in Ramsey, Cheney, Peterson.
     
  7. ixchelkali

    ixchelkali Senior Member

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    XMRV Induced Systemic Trauma

    XIST (like exist)




    I think if we went that way, it should be AX/ME, as in ax me. That creates a visual that seems apropo. Timberrrrrr!
     
  8. Forbin

    Forbin Forbin

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    Ramsay's Disease

    I have occasionally seen people invoke "Ramsay's Disease," which refers to Dr. Melvin Ramsay who first used the term "Myalgic Encephalomyelitis" (originated by Sir Donald Acheson) in a 1956 paper published in Lancet. In that paper he described the epidemic that struck Royal Free Hospital in London in 1955.

    I kind of like that better than all the HIV/AIDS inspired acronyms. "Ramsay's Disease" has some gravitas by virtue of invoking the long (and long ignored) history of the illness.
     
  9. taniaaust1

    taniaaust1

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    Its no good changing a name and put all different kinds of fatigue illnesses in the same catagory under a new name (which would happen if just the name was changed)... we dont want a new name and have ones who just have idiopathic chronic fatigue ending up under a new name too(which is what happens now.. ones with just fatigue are often called CFS in studies) , watering down what this whole illness is.

    We need clear SUBGROUPS. If we got distinct subgroups.. of cause those would have to be called something. Demand subgroups to be clearly declared and recognised, if we get that far.. all our study issues would be over and with that, more issues would be found and the illness less trivalised. (once its less trivalised, it would be far easier then to get fatigue out of the name)
     
  10. Stone

    Stone Senior Member

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    Yes, I see what you mean, but I'm not really talking about re-naming the poorly understood and woefully misdiagnosed non-disease that we are perceived by the press, the public and most doctors as having. I'm talking about (well more like wishing aloud about) re naming the real disease that "we" understand and recognize in each other but somehow seems to escape the grasp of "them". That disease is the one I want to rename. Idiopathic Fatigue is already aptly named. Chronic Fatigue is already aptly named. The disease commonly referred to as "Chronic Fatigue Syndrome" or "ME" which is (just for the sake of this discussion, possibly) marked by XMRV infection and neuro-immune pathology in a distinct but variable constellation, closely resembling that which is laid out in the Canadian Consensus Document on ME/CFS, is the disease that needs renaming. But you certainly have a valid point, no doubt, the repercussions of which are being played out before us as I write. *heavy sigh here* I must say though, some very good ideas for a name change have been brought out in this thread. I love the humor injected into the insanity of the ridiculous name problem too, and just when I needed it most. I still say I wouldn't mind a TEMPORARY name change for a while if it were a decent one, just as long as I never EVER again have to tell someone I have "Chronic Fatigue Syndrome". I was a nurse when I first became ill, and had worked in the medical industry starting at the age of 15. The first doctor that told me, "Ya know, you might have chronic fatigue syndrome; it would certainly explain what you're experiencing" received a sharply worded and furious response from me that I would not care to repeat here! That doctor made me so mad I could have spat! The nerve of that jerk telling me I wasn't sick. I was sick as hell, couldn't think or hold my head up or even sit in a chair without holding on to it because of the dizziness and he's trying to say I'm a hysterical malingerer!? That SOB! Little did I know after some 20 years of taking care of sick people in hospitals, nursing homes, medical laboratories and doctor's offices that CFS was a legitimate disease. I truly had absolutely NO IDEA it was real. I used to be one of "them" mentioned above. I didn't get it. But, if this disease had been known by a real name, even if it wasn't the quintessentially perfect name, and hadn't been so negatively stigmatized in the press and by the medical community as a result, I'm positive I would have been saved a world of grief both then and now, 15 years later. Perhaps the time has not quite arrived for a name change, at least not officially, but "we" ourselves, who know better should (in my own personal opinion) consider doing ourselves a great favor by immediately refusing to call it Chronic Fatigue Syndrome anymore. As pointed out earlier in this thread, we might be doing a lot of this to ourselves just by acknowledging the stupid name. "Little people" have changed they way they are referred to, and they did it by not allowing themselves to be referred to in other terms and referring to themselves as they prefer to be called. When was the last time you heard anyone described as retarded? It's possible for us, as a community, to change our own name to a large degree at least, even if the medical community calls it something else. People with hypertension say they have high blood pressure. People with hyperlipidemia say they have high cholesterol. We don't HAVE TO wait on "them". Why should we? Most of "them" wouldn't know a case of 'our disease' if it struck them personally (God forbid!). I sure didn't.
     
  11. taniaaust1

    taniaaust1

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    It is at that last point where things go badly wrong.. as CFS is different to ME! and even the CDC knows that (they had it listed as ME being different to CFS and not CFS in two different places at their site) .. but in England (probably due to Wessely) CFS and fatigue got called ME (probably done to really confuse the picture on what was a real condition) and then this seems to have further confused rest of the world.

    ME already has a name.. and it certainly isnt CFS. (so its more of a case of governments confusing doctors and certain doctors who have links to insurance companies, confusing governments).
     
  12. Stone

    Stone Senior Member

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    Wow! I have never heard that before. So what is the difference between the two? Why do we hear it referred to by so many researchers as ME/CFS? I always thought the two were the same. I don't have a copy of the long version, but on the title page of the short-version of the Canadian Consensus Document it says, "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners An Overview of the Canadian Consensus Document" Doesn't the title embrace agreement on the name of the condition described within the document? What am I missing here?
     
  13. taniaaust1

    taniaaust1

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    i'll try to find a page on the site where the CDC puts them as completely separate things and post the link. They still had those pages up last year so i assume they are still there. (if anyone knows where that CDC page is or finds it before me.. please put it here).
     
  14. taniaaust1

    taniaaust1

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    stone.. first page i looked at had something written on this (so i wont bother looking for the other page which also separates them and said that ME has to be discluded from CFS..

    (its a game the CDC has played for years as note they dont have a ME page at the CDC.. but they want to make sure that people with CFS and obvious issues arent classifed as CFS. I believe they want CFS to be a psychological issue (but dont want ME to exist..hence no page or nothing for it except for leaving a loophole in things by a mere mention of ME being a bit different). (This is the excuse they can use for their studies being wrong.. different patients were used in the other studies!, they were of other neuro issues eg ME and not CFS.. hence to them.. the WPI patients werent CFS patients but probably ME patients. They can say the WPI used wrong patients :p , what a twisted world we are in).

    quote from CDC site on the CFS section

    "Similar Medical Conditions

    A number of illnesses have been described that have a similar spectrum of symptoms to CFS. These include fibromyalgia syndrome, myalgic encephalomyelitis, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis. "

    http://www.cdc.gov/cfs/cfsbasicfacts.htm

    Note.. ME is put under a heading "SIMILAR Medical Condition" .. that distingishes as a separate illness to CFS.
    ............

    So yes the CDC study is a CFS XMRV study is not a ME study .. ME closer to CFIDS, most CFIDS patients would have ME (im not counting the English ME which they've stolen the name but rather more so Ramsey ME).
     
  15. Stone

    Stone Senior Member

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    Actually, I put absolutely NO confidence in the CDC at all. They are not an authority on CFS or ME. That's abundantly obvious to virtually everyone who has read and understands the history of the CDC's handling of CFS all along. Do you have any other source you can point me to that describes the difference between ME and CFS? The authors of the Canadian Consensus Document do not mention any difference in the two diseases, so I'm at a loss to understand where you're coming from on this. It's not making sense to me. Is it possible you are considering Chronic Fatigue Syndrome (CFS) to be the same thing as chronic fatigue? If that's the case, then I think I do understand what you mean. CFS and chronic fatigue are two vastly different things. CFS is a disease with a defined set of symptoms and biomarkers, while chronic fatigue is just 'tired a lot' and is merely a symptom. Is this what you mean?
     
  16. ixchelkali

    ixchelkali Senior Member

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    I don't quite subscribe to the school of thought that says ME and CFS are separate diseases, but I am sympathetic to that way of looking at it. I suspect that they may be different manifestations of the same disease. If they weren't closely related to begin with, they've been so muddled together now it may be impossible to distinguish them. But then, I think that Gulf War Syndrome and fibromyalgia may be part of the same spectrum of diseases, too.

    However, here are a couple of sources that do a good job of explaining the concept of ME as a separate disease.

    The Hummingbird's Guide has LOTS of info on it: http://www.hfme.org/meoverview.htm
    And the National Alliance for Myalgic Encephalomyelitis website has Dr Byron Hyde's take on it: http://www.name-us.org/DefintionsPages/DefHyde.htm
     
  17. taniaaust1

    taniaaust1

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    the post after yours has some good links which will help to explain the differences.

    Yes and no to that question. It all depends on which defination of CFS is being used!!

    I've heard that there is actually 11 different definations out there (Im not sure thou there are not many thou). The CDC over the years has quite a few it uses depending on whatever it's trying to prove and a CDC defination may include those just with chronic fatigue and depressed.

    Yeah i agree CFS is a disease with defined set of symptoms, thing is, each defination is different and with some definations not even "postexertional" fatigue or symptoms has to be present. As far as biomarkers go, most definations of it dont have biomarkers (if by biomarkers you are meaning things which can be tested and show CFS).

    i suggest reading some of the ME (non wessely) sites and you will get more understanding of the different views of it all and different definations.

    Why should they be mentioning the differences when each thing is clearly defined and distinct already (the canadian defination was based mostly on ME).. the world health organisation separates various things such as ideopathic?? (have i got the word right?) fatigue from CFS .. but with a CDC version person may just have ideopathic fatigue
     
  18. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    Call it what it is

    Hi all,
    I'd like to share a few thoughts with you on this one :

    1. Nobody seems to like (or support the use of) the name CFS - it's too ambiguous

    2. The name XMRV seems to have gained traction (as an acronym), even though it is a clumsy and non-specific one in it's fuller version
    (I think that those who discovered it have acknowledged this ) and yet nobody seems bothered to come up with an alternative - maybe XMRV is just so catchy !

    3. Personally, I don't buy into the XAND name - because (in my mind) it stands for "Xenotropic Associated NeuroImmune Disease" which is meaningless.

    4. I would like to see "NeuroImmune Disease" somewhere in a new name / acronym

    5. Are we perhaps talking about creating a name for a whole new class of disease, the common thread of which, being a virus (or viruses) - we therefore need to consider leaving room for the evolution of sub-classes / branches of the general classification.

    6. For me, the key words are therefore: Virus (or virally) Acquired (or Induced) Neuro Immune Disease

    Hence: VANID
    VAND
    VINID
    VIND


    take your pick - or is the use of the letters V & D in the same acronym a complete no no ?

    TGOP :Retro smile:
     

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