M.E. is not CFS

Discussion in 'Fibromyalgia Main Forum' started by voilahhh, Sep 15, 2006.

  1. voilahhh

    voilahhh New Member

    Chronic Fatigue Syndrome is a vague and trivialising umbrella term which basically describes post-viral fatigue states that don’t resolve quickly like EBV, undiagnosed medical conditions or psychiatric illnesses, the Guidelines recommend only routine laboratory tests which are normal and then state that CBT and GET are the only effective treatments – and that is why doctors don’t believe in CFS and say there is nothing wrong with you!

    Myalgic Encephalomyelitis or M.E. is a distinct and definable neurological disease of the central nervous system. The Canadian Consensus Guidelines recommend further important laboratory tests such as NK cell activity, RNase L immunoassay, X-Ray &/or MRI of brain and spinal cord, tilt-table test, sleep study, qEEG, Spect Scans, Pet Scans or Spectography, and 24-hour Holter Monitoring of the heart, to clearly diagnose that you have M.E. or whether you have M.S. for example.

    It is not just M.E. that has been discredited by the damaging name change, health systems everywhere are seriously underfunded and could not cope with the massive explosion of cases of M.E. in the 80s. So the CFS name and the yuppie flu tag were invented and the very similar and/or overlapping conditions such as Fibromyalgia, Multiple Chemical Sensitivities and Gulf War Syndrome were also disbelieved and ignored.

    Some patients are concerned that the name is inaccurate but M.E. is a verifiable “encephalomyelitis” as autopsies have confirmed inflammation of the brain/spinal cord, and no name could ever describe all of the symptoms. Some worry that the name will change again when the cause is known, but we don’t know the cause of many diseases and these names will not change when the causes are eventually discovered.

    The M.E. sub-groups are already being defined by Prof Kenny de Meirleir from Belgium, who has devised a simple set of six blood tests including NK cell activity to determine a patient’s Th1 or Th2 immune status and the severity of the disease. The sub-grouping of the disease won’t affect the name in anyway, but will help in getting patients diagnosed earlier and assist in developing appropriate treatments.

    Most people who are familiar with the history of M.E. want to simply reclaim the original name because they recognise how damaging the CFS name change has been and that trying to rename the disease again will be an extremely difficult and complicated fight, and a confusing setback for all of us.

    It is unnecessary to rename the disease M.E. as it is well established as an officially classified and legitimate medical disease that is known around the world. I live on the other side of the world in Australia so its not just countries like the UK that recognise M.E.
  2. findmind

    findmind New Member

    Hi again! I agree with you; the CDC changed the name from M.E. to CFS in order to hide it. The World Health Org. (WHO) has the name and the illness correctly defined.

    Question: Does Dr. DeMelier call it ME or CFS, I can't remember!

    Thanks for the important input. I love it.


    findmind
  3. mezombie

    mezombie Member

    Thanks again, Voilahh!

    Some of the authors of the Canadian Consensus Guidelines are from the U.S. Can you guess that they don't work for the CDC?

    We, in the U.S., really need to focus on getting these guidelines accepted by our Public Health Service (which includes the CDC and NIH). Calling all advocates!

    By the way, I've had all the tests recommended for a positive Dx of M.E. Makes absolutely no difference here in the good ole USA.
  4. phoenixrising2

    phoenixrising2 New Member

    The Canadian Consensus Guideline here in the US. This is the best there is out there.

    The disease doesn't need to be renamed. It's already ME around the world. We need it to be ME in the US.

    Hugs,

    Phoenix
    [This Message was Edited on 10/02/2006]