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Naming the disease, what difference does a label make to the individual?

Posted , 7 users are following.

Elmo69
Elmo69

Hi,

I am an avid fan of "bio-psychology", especially the psychology behind development of illnesses.

Having been recently diagnosed with CFS/ME, I have been doing lots of reading into the history of the diagnosis and the attempts of science to find the physiological cause.

I have found the work of Melvin Ramsay very significant.

The book by Simpson and Blake, " Ramsay's Disease - ME and the Unfortunate Creation of CFS" very interesting.

Has anyone else got any recommendations regarding origins and the science behind the disease?

0 likes, 12 replies

12 Replies

  • Beverley_01
    Beverley_01 Elmo69

    Posted

    Hi Elmo,

    In answer to the title of the discussion and with a history in psychology, I think the "label" we are given has a serious affect on our psyche. Most people here state they feel unheard, unbelieved and therefore unhelped with this condition. Medically and personally in their lives. Me included. People battle on because this negative feedback can make you also believe that it's not all that bad. For example, if you have the label cancer or ms people understand this and can offer compassion. With the cfs/me label, there is more often a lack of understanding.

    This doesn't answer your question about the science behind the disease I appreciate that.

    Best wishes

    Beverley

    • Elmo69
      Elmo69 Beverley_01

      Posted

      I have definitely found that to be true about people having no idea what CFS/ME is as compared to diagnosis of cancer!

      At my work recently a colleague was diagnosed with cancer and there was a "collective" card signed to let her know we were all supporting her. She's on sick leave having had surgery and awaiting further treatment and no-one seems to mind doing extra cover whilst she's off.

      I was diagnosed with CFS/ME approx two weeks afterwards and, as I always tend to be open with my employer and colleagues, sent out an e-mail to let everyone know, attaching a leaflet from "Action for ME" about ME in the Workplace and had ONE response! Approx five yrs ago I shared a "common" mental health disorder with all and got a lot of support from everyone, then again a couple of yrs after that had good support when my daughter had a serious mental health disorder diagnosed!

      I am sure that if this "disease" was given a "proper" name, instead of maintaining the link to either ME or CFS, it would garner wider general publicity and acceptance.

    • andrew22534
      andrew22534 Elmo69

      Posted

      I tend to go with this... - Myalgic Encephalopathy or “ME” (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis)
    • Beverley_01
      Beverley_01 Elmo69

      Posted

      It is hard to get the support for this condition. Such a devastating condition without the recognition.
  • Ravenwood
    Ravenwood Elmo69

    Posted

    Elmore, the best information I've found in on PubMed. I read the recent articles to keep up on the science. If you haven't been there before, just type in either myalgic encephalomyelitis or chronic fatigue syndrome into the search bar, and you will pull up articles by the most recently published. Cool?
    • Ravenwood
      Ravenwood

      Posted

      Elmo, sorry about the name. Stupid auto correct.
  • alison44235
    alison44235 Elmo69

    Posted

    M.E. is not a psychological illness, but it is depressing having it.
    • Elmo69
      Elmo69 alison44235

      Posted

      Totally agree! It is most definitely NOT a psychological illness and this needs to be highlighted to the wider public and also many healthcare professionals!
  • jackie00198
    jackie00198 Elmo69

    Posted

    Hi, Elmo. I trust that you're not saying ME/CFS has a psychological cause. Because this label--that ME/CFS is a psychological illness and it's all in our heads--has been responsible for countless problems in getting research done and finding a cure. Since you have the illness yourself, I'm sure you agree that it's a physiological illness.
    • Elmo69
      Elmo69 jackie00198

      Posted

      I am sorry if it is not clear so let me clarify - I definitely do NOT believe CFS/ME is a psychological illness!

      It is most definitely a very physically and mentally debilitating illness! I strongly believe there is a physical cause related to the inadequacy of my body to produce sufficient energy.

      Definitely VERY real and VERY physical!

      Apologies to anyone who may not have understood my meaning! :-(

  • Fidd
    Fidd Elmo69

    Posted

    There was a piece on Huffington Post this week about a new report looking at the politics behind the biopsychosocial model for CFS, and how it relates to attempts to cut disability benefits in the UK.

    The Misleading Research at the Heart of Disability Cuts - Simon Duffy

    • Elmo69
      Elmo69 Fidd

      Posted

      Thanks Fidd! Interesting article.
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