Countrygirl
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http://blogs.bmj.com/medical-ethics...&utm_medium=facebook&utm_source=socialnetwork
Some illnesses are uncool.
That might sound like an inflammatory comment – especially for a medical journal, yet perhaps the biggest concealed fact in medicine is that hierarchies of diseases exist among patients and healthcare professionals. A caste system of illness influences how patients perceive their health complaints, whilst health professionals also hold biases that influence how they treat and rank patients in the medical pecking order.
When it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list. In the 1980s, newspapers helped coin the dismissive label “yuppie flu”; today, ME/CFS sufferers are still being referred to psychotherapists to work on their “faulty” illness beliefs. The truth about CFS/ME is that it is a medically contested illness; the NHS and NICE guidelines acknowledge that there are massive gaps in our current understanding around the illness, its cause and its impact on patients. CFS/ME is also illness that can devastate lives, leaving many housebound, bedbound and isolated, not just from society but also in terms of medical support.
Acknowledgment about the limited knowledge about this illness (which, indeed, may turn out to be a cluster of different diseases or illnesses) is frequently overshadowed by disagreement about theoretical models of the aetiology and morphology of ME/CFS. Ramsay’s 1950s model of ME as a post-viral infection causing muscle weakness and neurological inflammation was challenged by psychiatrists McEvedy and Beard, as nothing more than mass-hysteria. ‘ME’ as a medical entity was later supplanted in the 1980s by psychiatrists such as Simon Wessely, replaced by the label ‘chronic fatigue syndrome’; a fatiguing syndrome of unknown origin that exists, in part, as a result of dysfunctional illness beliefs, as well as social trends and social care systems that reward illness seeking behaviours.
Leaving aside medical controversies, what appears to have been forgotten is medicine’s duty of care. Studies consistently show that patients with CFS/ME routinely feel disbelieved, distressed, and deeply dissatisfied with their medical care. In our article [co-authored with Havi Carel] we aim to show that patients with ME/CFS are often dismissed and may even be harmed when doctors ignore or challenge the legitimacy of their illness experience. Research shows that many patients with ME/CFS feel marginalised, neglected, and drop out of mainstream medicine in despair.