Posted by Heidi/Mermie Hillary Johnson writes, 'It is our opinion that far from ME/ICD-CFS simply being a disease of the upper middle class, many of those who fall ill as children, adolescents, and young adults become a significant proportion of the chronic poor.' (1986 p. 687) ME/ICD-CFS is very common. ME/ICD-CFS is around three times more common then Multiple Sclerosis, it is also more common than lung cancer, breast cancer, or HIV (in women) with an estimated 2 million sufferers in the US 250 000 sufferers in the UK and around 36 000 in Australia and many more worldwide. Children and teenagers are not immune either and children as young as five have been diagnosed with ME/ICD-CFS. One hundred thousand kids are estimated to have ME/ICD-CFS in the US alone and a recent study in the UK found that ME/ICD-CFS was by far the most common reason for a child's long term absence from school. All ages are affected but most commonly sufferers are under 45 at onset. ME/ICD-CFS affects all races and socio-economic groups and has been diagnosed all over the world (Hooper et al. 2001 [Online]). MYTH: There's no such thing as an outbreak of ME/ICD-CFS Most people are surprised to know that ME/ICD-CFS actually occurs in both epidemic and endemic (single) form. However outbreaks of the illness are far from rare; 'Many outbreaks occurred right after polio epidemics pointing to a relationship between the two illnesses. An idea supported by the fact that post-polio syndrome and ME/ICD-CFS symptoms are strikingly similar. The CDC has recently placed [ME/ICD-CFS] on its "Priority One; New and Emerging" list of infectious diseases, a list that also includes Lyme disease, hepatitis C, and malaria. . . While the historical questions of how, when, and where [ME/ICD-CFS] originated may be debatable, the question of its current status is not.' ( There is a history of recorded outbreaks going back to 1934, when an epidemic of what seemed at first to be poliomyelitis was reported in Los Angeles A review of early outbreaks found that clinical symptoms were consistent in over sixty recorded epidemics of M.E. spread all over the world ME/ICD-CFS is a systemic disease initiated by a virus infection. This point of view is supported by history (ME/ICD-CFS epidemics have followed polio epidemics and serological studies have shown that communities affected by an outbreak of M.E. were effectively blocked (or immune) from the effects of a subsequent polio outbreak). incidence (correlation with a flu-like prodromic illness), symptoms (swollen lymph nodes, low-grade fever, sore throat), and similarities with other viral ailments, notably mononucleosis and post-polio syndrome Research also supports a viral causation for the illness. In 1959 Dr. Donald Henderson (a CDC epidemiologist) and Dr. Alexis Shelakov (a NIH epidemiologist), published a comprehensive review paper in the New England Journal of Medicine describing several outbreaks. Dr. Henderson noted: 'The pattern of the epidemic, the absence of any common exposure factors and the high incidence among medical and hospital personnel were consistent only with an infectious disease transmitted from person to person.' As Dr Elizabeth Dowsett explains: 'The problem we face is that, in spite of overwhelming epidemiological and technical evidence of an infectious case, the truth is being suppressed by the government and the 'official' M.E. charities as 'too scary' for the general public.' Conclusion As I mentioned at the beginning, common misconceptions about ME/ICD-CFS mean that it affects so much more than just the health of its victims. It can negatively impact on almost every aspect of life until you are left with absolutely nothing. It can destroy your identity and sense of self worth for one thing - being told you are lazy or making things up for so long takes an emotional toll. As does dealing with serious illness with little support: "It is difficult to describe the effect of being told you are not really ill when you are. The disjuncture between private experience and public image is so severe." Patricia Fennell, a psychosocial clinician and researcher has found that many ME/ICD-CFS patients experience: "a post traumatic stress disorder (PTSD) -like syndrome because of the social context in which they are sick." "This trauma" she asserts, "is caused by abusive and/or ignorant doctors, a negative cultural response, and the overwhelming and continuous grief of remaining sick for a long period of time without relief." From Ricky Buchanan, a severe ME/ICD-CFS sufferer: "The most common cause of death in patients with CFS is suicide. Unsurprising when you think about it - its pretty hard to stay OK with yourself when most of the world thinks you're just "tired all the time" and in fact you're paralysed, on narcotic painkillers due to the overwhelming agony, are totally bedridden and suffering epileptic seizures."
on 8/27/2007, 4:22 am
The image of [ME/ICD-CFS] as a white middle-class women's disease is hard to live down. It lingers in the public mind, so that people are still surprised to learn that there are children, African-American, Hispanic, Asian men and women of all ages and classes that have the disease. The profile turns out to be wrong.'
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