Myalgic Encephalomyelitis M.E.

Discussion in 'Fibromyalgia Main Forum' started by voilahhh, Sep 14, 2006.

  1. voilahhh

    voilahhh New Member

    1. Myalgic Encephalomyelitis (M.E.) was first named in 1956 by Dr Melvin Ramsay and Dr John Richardson who were studying patients with this disease, which had previously been referred to as Atypical Poliomyelitis due to the similarities of the diseases and the similar timing of the outbreaks, and backed up by their knowledge of the medical records since 1932. Their medically sound reasons for this name have been validated by 50 years of research.

    2. M.E. was then officially classified as a neurological disease in 1969 by the World Health Organization (WHO) International Classification of Diseases (ICD). All member countries of the WHO are bound by these classifications, it is the WHO and not the USA CDC that determines how a disease is classified! The CDC deliberately tried to change the name to trivialise sufferers as psychiatric patients, hypochondriacs or malingerers. However Myalgic Encephalomyelitis is still officially recorded in the WHO ICD as a neurological disease today despite their efforts.

    3. The CDC redefined the disease in 1988 as Chronic Fatigue Syndrome, a trivialising umbrella term that includes any undiagnosed condition or psychiatric illness that has fatigue as a symptom, whereas M.E. is a distinct neurological disease. It was changed for political and financial reasons because there was a massive explosion in the number of cases reported in the 80s - the US does not have a public health care system and insurance companies were facing collapse if they had to payout those disabled by the disease.

    4. Genuine M.E. researchers have since been forced to use the term CFS in order to get their studies peer-reviewed and published. Unfortunately the CFS criteria selects patients with various undiagnosed conditions or psychiatric illness - and not strictly defined M.E. - resulting in many pointless and confusing psychiatrically biased studies which obviously produce inconclusive results that have seriously hampered research and further understanding of the disease.

    5. It is not just M.E. that is being politically discredited, the similar and/or overlapping conditions such as Fibromyalgia, Multiple Chemical Sensitivities and Gulf War Syndrome are also being discredited because of the political and financial motivations of governments and insurance companies around the world. Government health systems everywhere are seriously underfunded and insurance companies don’t care about our suffering either, they all just want to avoid liability.

    6. Some patients have concerns that the name is inaccurate but the disease is indeed a verifiable “encephalomyelitis” as autopsies have confirmed inflammation of the brain/spinal cord. No name will ever accurately describe all the symptoms. Some are concerned that the name will change again when the cause is known, but we don’t know the cause of many diseases and these well-known names will not change when the cause is eventually discovered.

    7. 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 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 relevant treatment protocols. He has helped set up Redlabs in the USA and is working with Bioscreen in Australia to have these tests made available.

    8. The interim term Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is being widely adopted to bring back awareness of the original name and eventually have the original name reinstated - another name change will only repeat the confusion and damage that CFS has done. The Canadian Clinical Consensus Guidelines for ME/CFS, which also lists thorough diagnostic tests, are now being adopted by many organizations and distributed to doctors to educate them and put an end to the cruel CFS myths.

    9. Most people who are familiar with the history and political manipulation of the disease want to reclaim the original name because of its historical official classification and recognition as a legitimate medical disease. The well-meant efforts to rename the disease again do not take into account just how difficult, confusing and damaging to our cause this could be as the name change to CFS clearly was, and how unnecessary it is because the disease already has a legitimate name.

    10. M.E. has now been officially recognised for fifty years and correctly classified by the WHO as a neurological disease, and is more widely known by this name around the world and thus represents the most practical choice. More people are becoming aware of what was done by the CDC to harm us by trying to destroy the name and the history of the disease and desperately want an end to the CFS disaster, which they see can logically be achieved by simply reclaiming the original name.
  2. Hootie1

    Hootie1 New Member

    Wow! Interesting information- I did not know the history. Please be sure to share this information in the threads about changing the name.
  3. phoenixrising2

    phoenixrising2 New Member

    This is information everyone needs to read.

    Thank you,
    Phoenix
  4. Leaknits

    Leaknits New Member

    BLESS YOU! I am not shouting with those capital letters there; I am being emphatic.

    I have printed-out your post, and am going to give my dr two copies. One to be put into my file, and one for his very own self.

    Reasons: he told me he has (quoting him here) "several patients with CFS." Despite that, he still seems to feel we can ALL be helped with anti-d's and psychiatrists.

    He doesn't seem to understand that M E presents with an enormous and ever-changing slate of symptoms. Nor does he get it that we can be different from each other in our reactions to his preferred treatment protocols.

    I am hoping your very clearly-worded post will clear up some of his ideas.

    I've pretty much given up on hoping he will be able to help me with this d'd...but he needs the info for his other M E patients.

    Thank you!
    Lea.