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What's really in a name?

Discussion in 'General ME/CFS Discussion' started by CBS, Mar 18, 2015.

  1. CBS

    CBS Senior Member

    Not really sure where this is going and to be honest, my focus on PR waxes and wanes (as I feel that everyone's should) but I wanted to see if we might get a discussion going about the real importance of a disease name.

    I think I'd be safe in saying that most of us agree that it is long past time that CFS was retired. But for what and does it really matter?

    Personally, I think our problems with most doctors are not due to the name of the disease (yeah, some are shallow assholes but why waste time worrying about that minority - just like in the patient community, most doctors probably don't waste too much time posting to Medscape or other forums) and most have likely see enough to know that many patients have something serious going on that they aren't able to diagnose with a lab test.

    If I'm right, then what are our biggest obstacles. I would suggest that our biggest issues are that doctors don't like treating us because:
    1) The lack of widely recognized and agreed upon effective treatments means that doctors that may only see one or two of us in their practices don't get much satisfaction from being able to help.
    2) We take too much of their time. We come into their practices in significant distress and with complaints across a laundry list of systems and there's no way they can deal with us in the standard 20-30 minute time slot.
    3) They can't make much money off of us without specific testing and treatments. In fact, doctors working under contract to third parties (a large majority in the US) get penalized for every blood test, EGD, or MRI that they order.

    So - we're unrewarding, time consuming and expensive. And yes, our disease is trivialized by the stupid name the CDC stuck us with because they were too lazy to follow-up on the results of their own early studies, many of which showed immunological abnormalities and endocrine dysfunction.

    Feel free to chime in!
  2. halcyon

    halcyon Senior Member

    I really hope that medicine learned its lesson with the CFS name. Don't name diseases after a solitary symptom of the disease. Especially don't name a disease after one of the most common medical complaints seen by doctors. Stigmatizing aside, this just begs for misdiagnosis and misunderstanding.

    I agree with your numbered points above. Also, doctors don't get too terribly excited about diseases with no proven etiology and/or diagnostic biomarkers. If we had either of those two things that might change the situation considerably.
    melamine likes this.
  3. Sasha

    Sasha Fine, thank you

    Interesting topic! I think that as long as a name isn't trivialising (as 'CFS' is), it doesn't matter much what we're called. In the UK, we've had 'ME' for a long time and that didn't protect us from having the 'CFS' label stuck onto us or being treated as though our disease was psychological. Until the science definitely shows a cause (which may be very close now), any name is just going to be a short-term placeholder.
    melamine, Sing, Mij and 2 others like this.
  4. A.B.

    A.B. Senior Member

    I also feel that there is some bikeshedding going on in these discussions about the name.

    aimossy, CBS, Valentijn and 3 others like this.

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