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Nightingale Research foundation
[1] The Nightingale Research foundation is a Canadian organisation for people suffering from chronic fatigue syndrome. It was founded by Dr Byron M. Hyde in 1984. It subscribes to the views of its founder that "chronic fatigue syndrome" and "myalgic encephalomyelitis" are distinct diagnoses rather than two names for the same condition.
The Nightingale Foundation has made several contributions to the care and well being of patients with CFS. It does this primarily been through representation of patients in the legal sphere rather than by conducting and publishing research in medical journals.
According to the organisation, it has developed and holds the largest database in the world of CFS patients and their accompanying pathologies based on over 23 years experience with these groups.
External links
Some ME Literature
- M. Hooper (2007), "Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research", Journal of Clinical Pathology 2007;60:466-471
This review examines research findings in patients with myalgic encephalomyelitis in light of the current debate about this chronic multiple-symptom, multiorgan, multisystem illness and the conflicting views in medicine. These issues cannot be separated from the political opinions and assertions that conflict with science and medicine, and will be part of this review as they have enormous consequences for scientific and medical research, patients, clinicians, carers and policy makers.
- Marshall EP, Williams M, Hooper M (2001), "What is ME? What is CFS? Information for clinicians and lawyers", Engeland
- WAMES (2004), "ME & CFS: A Report for the Welsh Assembly Government", Welsh Association of ME & CFS Support (WAMES), February 2004
One of the problems that patients have with the term CFS is that it highlights only the fatigue element which is just one of the main symptoms. This fatigue is also often misunderstood as little more than extreme tiredness. The umbrella term ME/CFS and latterly CFS/ME has been adopted by some to denote a spectrum of disorders with a fatigue element, not necessarily all of physical origin.
Much that is written in the British medical press about CFS is by psychiatrists referring to a Functional Somatic Syndrome. There are in fact many doctors and scientists around the world who, through clinical experience or scientific research, are convinced that there is also an existing neurological condition, ME, classified by the WHO (ICD -10 G93.3). ME researchers often find it difficult to get published in the UK, even if they are eminent people and their work is peer reviewed. This makes it difficult for health professionals to get an accurate picture of the range of illness covered by the term CFS/ME.
- Kennedy G (2004), "The Specificity of the CDC-1994 criteria for chronic fatigue syndrome: comparison of health status in three groups of patients who fulfill the criteria", Annals of Epidemiology, Volume 14, Issue 2, Pages 95-100
Differences in simple, easily performed clinical outcome measurements can be observed between groups of patients, all of whom fulfill the CDC-1994 criteria for CFS. It is likely that their response to treatment may also vary. The specificity of the CFS case definition should be improved to define more homogeneous groups of patients for the purposes of treatment and research.
- Yue M, Chillemi S, "The Scurge of CFS and ME: an interview with Dr. Byron Hyde", Grub Street online magazine, 29 June 2008 [2]
- Chaudhuri A (2002), "Chronic fatigue syndrome and myalgic encephalomyelitis", Lancet, 2002 May 11;359(9318):1698-9
ME quotes
"There are now over 4,000 published studies that show underlying biomedical abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it's not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over."
Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC (Centers for Disease Control and Prevention) press conference on 3 November 2006.[www.cdc.gov/od/oc/media/transcripts/t061103.htm]