Friday, May 6, 2011

Cheney on CFS

 In his now world-famous Testimony before the US FDA Scientific Advisory Committee on 18th February 1993, Dr Paul Cheney said: "I have evaluated over 2,500 cases….We have seen the worst and the best of the range of scenarios that can befall a patient with this disorder.  At best, it is a prolonged postviral syndrome with slow recovery or improvement within one to five years.  At worst it is a nightmare of increasing disability with both physical and neurocognitive components.  The worst cases have both an MS-like and an AIDS-like clinical appearance….We have lost five patients in the last six months….The most difficult thing to treat is the severe pain….The most alarming is the neurological and neurocognitive elements of this disease.  Half have abnormal MRI scans, 80% have abnormal SPECT scans, 95% have abnormal cognitive evoked EEG brain maps.  Most have abnormal neurologic examinations….40% have impaired cutaneous skin test responses to multiple antigens.  Most have evidence of T-cell activation….From an economic standpoint, this disease is a disaster. 80% of the cases evaluated in my clinic are unable to work or attend school…The yearly case production, if plotted, is exponential….The medico-legal aspects of our practice steadily grow as this disease eats at the fabric of our communities.  We admit regularly to the hospital (with)…inability to care for self….CFS is an emerging, poorly understood disorder with a distinctive clinical presentation.  I am not at all sure that it is as heterogeneous as some would lead you to believe….This disorder is a socio-economic as well as medical catastrophe that will not end….This disease is too complex to rely on standard medical orthodoxy to explain it….Listen to patients with an open mind.  Failing that, then listen to those who have spent countless hours with a thousand patients.  Most of us have some wisdom to impart and most of that came from patients".

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