If we no longer use the acronym CFS I believe we can further ...

Discussion in 'Fibromyalgia Main Forum' started by tennisnut, Aug 6, 2008.

  1. tennisnut

    tennisnut New Member

    our own cause.

    Because of it's trivialising nature, I have stopped referring to my illness as CFS.

    My first startling experience with people's reaction to the words "Chronic Fatigue Syndrome" came about a social gathering (in the days when I used to socialize).

    A person coming in at the tail end of a conversation asked me what was the matter with me and when I uttered those words, she fell about laughing madly - she honestly thought I was joking, as if I had just said "chronic sneezing syndrome" or "chronic dancing syndrome". Of course I had really hurt feelings and don't think I have spoken to her since, but maybe others might have that reaction also if they have never heard of (M.E.)

    Now, even when talking with my family I use M.E. and am gradually getting used to it.

    Cheers TN
    [This Message was Edited on 08/07/2008]
  2. Khalyal

    Khalyal New Member

    sucks, but it has a history. If I may make a suggestion, read Osler's Web by Hillary Johnson. Changing the name will not change the criminal politics surrounding this disease. What needs to change is the CDC's empirical definition in the U.S. Psychologizers like Simon Wessely and his band in the U.K. need to be brought up short.

    Until this happens, no doctor will take this disease seriously regardless of what we call it.
    [This Message was Edited on 08/07/2008]
  3. tennisnut

    tennisnut New Member

    My point is that if we, the sufferer, no longer use of respond to the CFS tag, surely that's a start.

    We haven't much power, especially with the medical fraternity, but I think it's worth a try. TN
  4. birdo

    birdo New Member

    My son has been diagnosed with cfs and Asperger syndrome...two that are in very hot debate with many about their true existence. So I now say 'Hershey Med. Center has diagnosed him with cfs and Asperger syndrome'. Somehow throwing the name of Hershey med. cent. makes it so much more acceptable.
    By the way, I know my post doesn't address the need to change the name. I remember it being called the 'Yuppie disease'. Talking about stereotypical!
    [This Message was Edited on 08/07/2008]
  5. kitteejo

    kitteejo Member

    I had a good day back in June, went to a wedding and danced all night with my grand-kids. I was telling my friend the story as I couldn't believe I made it through the night and did not get sick the next day. She looks at me and says "see if you just got up and exercised more you'd feel better". I want to punch her but just said "you have no idea what your talking about", and gave her a list of CFID symptoms and problems, again. She shut right up.

    I still talk to her but consider her an idiot!

    I've come to the point when someone asks me how are you I just say "hanging in there'. Then they don't have the opportunity to give me their stupid advise.

    Don't think a name change will help us, in my opinion.

  6. Khalyal

    Khalyal New Member

    Even if you want to go back to its roots and call it Myalgic Encephalomyelitis, you won't change the (lack of) treatment or the stigma.

    Twenty five years of suppression isn't going to go away all by itself, no matter what you call it.

    I'm afraid I personally always say CFS, but I qualify that by saying that I have CFS as defined by Dr. Byron Hyde. Note that Dr. Hyde was present from the beginning, saw the Incline Village outbreak for what it was, along with other prominent doctors (an outbreak of M.E.), and walked out on the meeting that saddled us with this name, along with some of these other prominent doctors. He has oftened wondered since if our fate may have been different had he stayed.

    Hyde says that M.E. is an injury to the central nervous system. He says "'Primary M.E. is an acute onset biphasic epidemic or endemic (sporadic) infectious disease process, where there is always a measurable and persistent diffuse vascular injury of the CNS in both the acute and chronic phases. Primary M.E. is associated with immune and other pathologies.'

    This is what CFS is based on. This is what I have. But even if you want to go back to its roots and call it M.E., you can see what has since happened regarding THAT name, thanks to that very same CDC empirical and "Doctor" Simon Wesseley's creative application of it in the UK. People with M.E. in the UK have faced all sorts of atrocities, even have been forced to leave their homes and go through intense "cognitive behavioral therapy" as if it's the patient's own faulty thinking that made them sick.

    [This Message was Edited on 08/07/2008]
  7. simonedb

    simonedb Member

    I dont' know what we should do about the name but hey, an aside here, you arent by any chance the guy that went to dr jho earier in the millenium? similar name as a guy used to be at brainchat.
  8. tennisnut

    tennisnut New Member

    No, that's not me. Cheers