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. kholmes

    kholmes New Member

    Great username, by the way.

    Was this from an article or a website?

  3. woofmom

    woofmom New Member

  4. woofmom

    woofmom New Member

    I wonder if it has anything to do with something I read about polio vaccine tainted with some kind of monkey virus. We're at the right age for it to really, really start showing up. I might be completely off base, but probably not.
  5. KMD90603

    KMD90603 New Member

    Thank you so much for sharing this wealth of information with us. I am one that whole-heartedly agrees with the name M.E. and I hope that some day the rest of the US will agree too. I have started calling it ME/CFS, in hopes of someday getting rid of the "CFS" part of it.

    Gentle hugs,
  6. mezombie

    mezombie Member

    Thanks for posting this. I really hope people will read and think about it.
  7. findmind

    findmind New Member

    Thank you again and again.

    I'l love to see this under your post M.E. is not CFS, they are so alike.....

    This is important stuff, folks, and so vital to understanding some of the history of the stupid name CFS!

  8. phoenixrising2

    phoenixrising2 New Member

    You are right on again!
  9. leobear

    leobear New Member

    It was ME when I was first dx about 30 years ago, we try to keep that name down here but have to compromise and use ME/CFS. YEAH it should be ME We are not just chronically tired it is way more than that.
  10. LonelyHearts

    LonelyHearts New Member