2007 ME/CFS Research Forum

ME/CFS RESEARCH FORUM: 26-27 March 2007
University of Adelaide
Convenor: Alison Hunter Memorial Foundation

Hooper M

Abstract

Science, Politics and Progress in Myalgic Encephalomyelitis, ME

Summary:
Key issues in ME [also called ME-CFS] from a UK and international perspective will be discussed. These include-

  1. The name of the illness,
  2. Its definition, local, regional, national, and international.
  3. Diagnosis and treatment.
  4. Research into the bio-medical basis of the illness
  5. Acknowledgement by agencies concerned with insurance benefits, care costs, and support for carers.
  6. Countering and demolishing psychiatric explanations of the illness and the inadequate, dangerous and demeaning treatments that are offered with it.
  7. Bias in government approaches and statements about the illness.

Important progress has been made
The Gibson Inquiry provides an important over view of the problems in the UK and has called for
-new investment into research, drew attention to the excellent work already done by major research groups in this area,
-challenged the MRC to take positive action in supporting such research with significant funding,
-accepted the bio-medical basis of ME-CFS,
-affirmed the WHO definition and the key criteria of the Canadian guidelines,
-challenged bias in the current NICE guidelines that are now under review,
-identified vested interest in the benefits and insurance industry with regard to support for ME patients and their carers.
It has provided a parliamentary agenda for change that is realistic and has won the support of many ME groups in the UK.
Internationally, there has been continuing challenges to the psychiatric theories encompassing the ideas of somatisation, and the biopschosocial theory(ies) associated with cruelty to children and young people and accusation about their concerned parents. Much of this has come from Australian clinicians and academics.
Excellent research studies have confirmed the immunological basis of the ME and consequent neurological and endcrinological deficits and damage. These provide new possibilities for treatment of the illness and hope for many who feel abandoned, disbelieved and uncared for in our society.
Overlapping syndromes, GWS, MCS, FMS, OP poisoning, Aerotoxic syndrome are all contributing important clinical and scientific understandings to many modern chronic illnesses and will benefit from research into ME.
The final challenge is to the ME communities to come together in a common purpose to seize these new opportunities, and support new developments/initiatives, and press governments to provide necessary funding for them.
It is a time of hope!

Emeritus Professor of Medicinal Chemistry, University of Sunderland, UK.

 

Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285

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