Dr Cheney wrote in 1993 at a Testimony before the FDA scientific Advisory committee about Chronic Fatigue Syndrome -
'The worst cases have both an MS- like and AIDS- like clinical appearance.'
'From an economic stand point this disease is a disaster 80% of patients at my clinic are unable to work or attend school. The average length of illness at the time of presentation is 3.8 years. 90% of cases have become ill since 1980. The yearly case production if plotted is ex potential.'
'Most patients have seen more than ten physicians.'
'In summary CFS is an emerging poorly understood disorder with a distinctive clinical presentation.'
'This disorder is a socio-economic as well as a medical catastrophe that will not end. I believe that government and university clinicians have spent too little time or thought too narrowly about these patients. This disease is too complex to rely wholly on standard medical orthodoxy to explain it. When in doubt listen to a thousand 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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So what have our governments done since- Nader.
Even now when the Whittemore Peterson Institute desperately need funding to further the work they are doing with XMRV research, so far all funding requests have been declined.
So was anything learnt in the last 20 years?
Well yes by those dedicated doctors who are working to get to grips with this dreadful disease but sadly not by our Health Authorities who still have their heads well and truly buried in the sand.
Seems Dr Cheney's description of an AIDS like clinical appearance was very near the mark, if XMRV is eventually proven to be associated with ME/CFS illness.
Sadly Chronic Lyme disease is not the only illness denied by our Health Authorities.
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