1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
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. Esther12

    Esther12 Senior Member

    Messages:
    5,375
    Likes:
    5,863
    I think we should keep the name, as a reminder of the history and the way patients were treated. If a causal link between CFS and XMRV is shown then the problems of the name will become irrelevent.
     
  2. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,196
    Sth Australia
    If XMRV does turn out it is the cause of CFIDS.. I think "Mikovits Disease" is the suggestion i like most so far. Not to long a name to write down or remember and it would help to get things away from all the previous stuff.
     
  3. Alesh

    Alesh Senior Member

    Messages:
    176
    Likes:
    1
    Czech Republic, EU
    I agree with Esther12,

    the stupid name "CFS" should stand as a commemoration of our suffering and the psychosomatic obscurantism. In a few years we may read about chronic fatigue syndrome killing children in Africa and everyone will realize how stupid and dangerous the psychosomatics is. (And that it is good that Wessely and his henchmen are in prison. ;) )
     
  4. MNC

    MNC Senior Member

    Messages:
    162
    Likes:
    38
    Lol :D The problems of speaking basic English. Sounds fun anyway. Whip me, lol. ;)
     
  5. JPV

    JPV Senior Member

    Messages:
    300
    Likes:
    88
    Isn't there already a dozen names for this condition? Why another one?
     
  6. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    New name = yes please!

    So far my favourite name suggestion has been WTF -brilliant!!! Thank you all for cheering me up with this :hug:

    I'd like the term Neuroimmune to be included &thought of NADS Neuroimmune Acquired Deficiency Syndrome. But that sounds ridiculous!! plus I'm female so I have no nads!! :tear:

    I really don't mind AND as a name as whatever acronym is used it will need explaining to the general public &at least AND does not have any negative associations.. although it's certainly far from perfect!

    I like the idea of a name based on the pioneers who discovered XMRV just not sure how that would work.. would be great if we could have both an acronym and a serperate name that honours the pioneers but maybe that would just get confusing :tongue:

    ANID is another one Aquired NeuroImmune Disease...

    Hmmm not getting anywhere with this really :ashamed:

    Really hope we do get a name change &a decent one though!!!

    Jan xx
     
  7. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    Still thinking on this...

    XMRV is a bit of a prob what about HNV instead Human Neuroimmune dsyfunction Virus, you know ya dealing with scientific terms here and unlike the original XMRV is easily explained &remembered &of course closer to HIV (Human Immunedeficiency Virus) so people will understand the similarities etc..

    As for the second part, I think AND is the only way forward.

    I therefore propose HNV-AND.

    :sofa:

    and as for why a new name; public perception, acceptance &understanding is why. If we have an appropriate name that is self explanatory (&actually correct for our disease) we would have to fight all the time to explain ourselves to normals.

    Gona leave it at that now, bigger brains than me will be the ones to decide on such things..

    Jan xx
     
  8. Esther12

    Esther12 Senior Member

    Messages:
    5,375
    Likes:
    5,863
    Hmmm... you could be right.

    I think that changing the name would make it easier for people to ignore past injustices though. I'm also worried about what will happen to those who do not test positive for XMRV. It seems that there are seriously ill people with CFS who are not testing positive, and I like the idea of maintaining some sense of camaraderie with them (assuming I'd test positivie if the XMRV link hold up... maybe I'll be one of the ones left behind!)

    I'd want to keep 'CFS' even if it did make things harder for us. Things would still be a lot easier than now.

    Anyway - we're probably getting a bit ahead of ourselves now. Even if all the WPI's work turns out to be right, I can't imagine the medical community caring less about what patients think their illness should be called!
     
  9. Min

    Min Senior Member

    Messages:
    1,298
    Likes:
    1,596
    UK
    RAWATAD?

    (ReevesandWessleyaretotalasses disease)
     
  10. cruzgirl

    cruzgirl

    Messages:
    33
    Likes:
    5
    Oh my G I am laughing so hard, I have to show this to someone, but no one is around. I love it.
     
  11. vdt33

    vdt33

    Messages:
    83
    Likes:
    7
    Texas
    I haven't laughed this hard in years! :tear: :Sign Good one:

    The name might as well be WTF because when you tell people you are infected with XMRV, they will think WTF.

    Maybe Starryeyes can make a video around it.

    vdt
     
  12. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    Truly, we must change the name NOW, because it's so difficult to explain to a physician that there have been new ground breaking research findings," See Doc, there's this relatively novel retrovirus called XMRV and...no, not a virus, it's a retrovirus, Doctor, as in HIV, HTLV..." And then the doctor starts to discuss with you his vast amount of disinformation about EBV and how it turns out that it's not really the cause of your "chronic fatigue", and how "chronic fatigue" is really a wastebasket diagnosis and bla, bla, bla. The fact remains that no matter what they eventually find that causes this thing, the doctors, employers, family members and general public never hear the word "syndrome" and only hear and use the term "chronic fatigue" which means "tired a lot". It truly is like calling AIDS "Chronic Unwellness Syndrome" which is then shortened to "chronic unwellness" which means "sick a lot". No, not only does the F-word have to go, but so does the C-word. Of course it's chronic, so is MS, Diabetes, CHF, Alzheimers, and WTF? If it were not chronic, it would not be as much of a problem now would it? The whole term Chronic Fatigue Syndrome has go. It creates more harm than having NO name at all and adds unnecessary suffering to a group of very sick people who can stand it no more! They even call it "chronic fatigue" half the time at the CFSAC meetings in Washington! And these are supposed to be the people who have a clue about this disease. No, we MUST change the name, even if it's temporary. It won't muddy the waters any more than they already are. I think the next time I hear a doctor or so-called expert refer to this as 'chronic fatigue' I'm going to come unglued. I don't see any need to wait. We've waited long enough. How about "AIDS-lite" any takers?
     
  13. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    Yeah Reeves Disease and Wessely's Disease need describing too. Lots more work there for psychologists...
     
  14. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    181
    yorkshire
    i just love my brain at times i read that as WHIMPENIS disease :eek:

    I think i need a kip :ashamed:
     
  15. L'engle

    L'engle moderate ME

    Messages:
    965
    Likes:
    440
    Canada
    That's true... I guess it's either 'needs' or 'naids', which sounds wrong too. I like the idea of naming it after the discoverer.
     
  16. Doogle

    Doogle Senior Member

    Messages:
    196
    Likes:
    28
    Seriously, the name is not going to change to XAND, NEIDS, or X-AIDS right now, but I believe the time is ripe to shove aside the F word. We just need to get rid of the common use of the term chronic fatigue syndrome ASAP because every time someone shortens it to chronic fatigue I envision Wessely grins and knows he is shooting us in the kneecaps.

    CFS/ME is gaining traction and the English MRC recommends its use. The biological researchers have already recommended the name to ME/CFS or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The acronym ME/CFS should keep reporters from shortening it to chronic fatigue. The simplicity is that we only have to resolve to informally banish the use of CFS in this forum and in all our other writing, and spread the word. Please use the term ME/CFS, and gently remind others to edit their posts and not use the F word when you see it. If we keep shooting ourselves in the foot by using the F word among ourselves, I don't see how we can expect others to change.

    Let's resolve an issue instead of putting out 100 good ideas and then debating them to death.

    Urgency, most of us have a neurological illness probably caused by a retrovirus, and we are an opportunistic illness, car accident, hospitalization, or other stressor away from our illness worsening, getting cancer, or dying. Urgency, our lives depend on it.
     
  17. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    Now THAT's what I'm talkin' about!! Thank you Doogle! I second the motion to adopt the term ME/CFS or ME/CFIDS (which rolls off the tongue more readily for me) and discontinue using the F-word. Thank you!
     
  18. Min

    Min Senior Member

    Messages:
    1,298
    Likes:
    1,596
    UK
    I have liked the 'none-paralytic polio' name until I found that some sufferers are paralysed. The term 'living death' would best describe severe M.E.
     
  19. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    I'm all about Mikovits' Disease.

    -It seems right to honor her (I think it's an honor??)
    -Those type of names always sound serious....Lou Gehrig's disease, Kaposi's sarcoma etc. etc.
    -Easy to remember.
     
  20. Doogle

    Doogle Senior Member

    Messages:
    196
    Likes:
    28
    I know, I know, and I don't want to damp down your fun. Sometimes I get grumpy when I think of how close to treatments we were in the late 80s and early 90s and wonder if the patient community had been more demanding then like the AIDS patients were, that many of my ME/CFS friends might be still be alive.
     

See more popular forum discussions.

Share This Page