Research

The cost of CFS/ME/FM to society is estimated to be 9 million dollars annually, even before considering medical or disability costs. It is not surprising that there are many organisations set up to advance research into the illness and its treatment, here are some that I know of.

Nightingale Research Foundation
Canadian organization dedicated to the study and treatment of CFS/ME and related illnesses. Has been investigating M.E. and CFS patients since 1984. They derived their name after Florence Nightingale (1820 – 1910), who fell ill with an infectious disease that was indistinguishable from the M.E. and CFS family of illnesses.
Florence Nightingale is an inspiration to those of us suffering with CFS/ME, despite the fact that she was bed-ridden for most of the rest of her life, she continued to learn more about infectious diseases, to improve nursing education and hospital administration and to publish over 200 books, reports and articles on these matters.

Whittemore Peterson Institute for Neuro-Immune Disease
Located on the University of Nevada’s medical school campus in Reno, Nevada. The Institute was developed to help serve those with neuro-immune deseases through active working relationships with clinical experts. They began their research in 2006 and work has included the discovery of the infectious retrovirus, XMRV in more than 95% of patients sampled.

Alison Hunter Memorial Foundation
A Sydney based organisation in Australia. The Foundation was established in 1998 as an enduring memorial to Alison Hunter and all those whose lives have been devastated by ME/CFS. Alison died in 1996, aged 19, from complications arising from ME/CFS. The complications she experienced are rare and only present in a severe subgroup. Alison courageously fought ME/CFS for ten years and was an unstinting advocate for young people.
“Even the most understanding doctor becomes frustrated when tests repeatedly come back ‘normal’. They cannot give us a pill to make it (and us) go away, and worsening health drives us back again and again in desperation to ask “Doctor, can’t you do something??”.
– Alison Hunter –
A group of independent researchers in Adelaide, Australia, who are supported by the Alison Hunter Memorial Foundation, have made a breakthrough in CFS research using new approaches to the analysis of MRI scans of the brain.

Medical Research Council UK
The Medical Research Council set up a CFS/ME Expert Group in 2008 to consider how to encourage further research into CFS/ME. The organisation supports a range of research projects.
One research project looked at four different treatment types and showed that graded exercise and cognitive behaviour therapy proved to be the most effective. Manuals developed for the trial have been made available online at www.pacetrial.org.

ME Research UK
ME Research UK is a charity with the principal aim of commissioning and funding scientific (biomedical) investigation into the causes, consequences and treatment of CFS/ME. MERUK also publishes its own magazine which features updates on projects funded by charity and recent research and articles on other CFS/ME issues.

European Society for ME
Their mission – to create a Think Tank where top scientists from relevant fields can discuss current CFS/ME knowledge in order to determine the most crucial direction of future research, and to provide a reliable source of cutting-edge CFS/ME information that ESME will incorporate in the education of medical professionals.
They have developed a direct and hard hitting flyer which is available for distribution.

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