Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Is it worth explaining the difference between ME and CFS to the public??

Discussion in 'Action Alerts and Advocacy' started by Tulip, Apr 9, 2011.

  1. knackers323

    knackers323 Senior Member

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    Anyone know how Jodi Basset is doing or know how to contact her?
     
  2. ukxmrv

    ukxmrv Senior Member

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  3. ottomatt

    ottomatt

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    Has anyone received better or different treatment by the general public or the medical profession by calling their CFS diagnosis ME? Did your condition improve when you called it ME? Would you have less pain/symptoms if you called it CFS? I have noticed no difference at all when I call it something else. If there were such clear distinctions between CFS and ME and if those distinctions were able to lead to recovery in either group they would benefit all sufferers, regardless of the name. Where we look like a duck, walk like a duck and quack like a duck we are ducks. There are far too many experts on the name game, if they applied the time they spent on facts to argue over a name to finding solutions to the illness we would all be better off. Quack on folks!
     
  4. Snow Leopard

    Snow Leopard Hibernating

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    Almost no time has been spent by researchers and patients on discussing the name and I think that is the whole point of this discussion - to talk about it.
     
  5. sinas

    sinas

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    Hi all,

    I am not diagnosed but I have PEM, backpain and all kinds of neurological symptoms since one year ago. .
    Doctors keep pointing to the chemoterapy I received against germ cell cancer, even though that should not cause the symptoms i have (not even in rare, 1/1000 cases). MRI is normal, hence they stopped caring.
    Normally, fatigue is not a main syndrome for me. I can work, shop go out and play sports. But PEM can be tough usually.
    all in all, the name CFS is VERY misleading for folks with ME (I assume I have ME even without a diagnosis) so YES, a differentiation would make a lot of sense.
     
  6. NelliePledge

    NelliePledge plodder

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    i just say ME which some people call CFS most people havent heard of either including Drs in the UK
     
    hellytheelephant and MEMum like this.
  7. wastwater

    wastwater Senior Member

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    Post viral fatigue syndrome (PVFS) is another name for ME which is often overlooked now
     

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