Preface to the Proceedings of the Clinical and Scientific Meeting, Sydney 1999
The 1999 meeting in Sydney heralded the Alison Hunter Memorial Foundation's annual citation for an outstanding contribution to Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS). It is with the greatest pleasure that the Foundation recognises the work of Hillary Johnson with the innaugural award for her courageous book Osler's Web—over ten years of dedicated meticulous documentation, at great personal cost.
The position facing those with ME/CFS is most clearly articulated in statements extracted from the testimony of Jill McLaughlin on April 29 1999 to the US Congress-convened CFS Interagency Co-ordinating Committee:
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"It
is unconscionable that patients who are very ill have to search
for information and potential treatments and try to educate the
very people whose job it is to protect them...we've been subject
to deceit, denial and dissembling...Patients are still suffering
mainly due to their inability to access adequate medical care and
social support. Others are dying or committing suicie—not from
fatigue or stress or depression or deconditioning, but from negligence
and apathy!"
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It was most heartening to see the many dedicated medical practitioners and scientists attending the Conference committed to the search for ways to provide better care.
At this stage, clearly there remain more questions than answers, but another small step has been taken.
Christine
Hunter
Annette Leggo
Alison Hunter Memorial Foundation
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