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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.
There can be little doubt now that myalgic encephalomyelitis is correctly described as an encephalitis associated with upregulation of pro-inflammatory immune responses, with downregulation of suppressor cytokines. This, coupled with the association of NTE gene, validates the WHO nomenclature and classification under neurology that allows the alternative name of post-viral fatigue syndrome. It is heartening that syndromes of uncertain origin (fig 1) are now seen to have a common basis that provides a much better understanding of these complex illnesses. Undoubtedly, the perverse use of CFS, to impose a psychiatric definition for ME/CFS by associating it with fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those with this illness. (Walker MJ (2003), "Skewed: psychiatric hegemony and the manufacture of mental illness", London: Slingshot Publications.)

  • 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, "Dr. Byron Hyde: CFS and the Nightingale Foundation", 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
  • Richardson J (2001), "Enteroviral and toxin mediated myalgic encephalomyelitis/chronic

fatigue syndrome and other organ pathologies", Binghampton, New York: Haworth Medical Press Hooper: John Richardson’s major work was published in 2001, one year before he died.34 His work emphasises the extensive role of enteroviruses and their effects on the major systems and organs of the body; reports recorded blood flow in the brain with extensive hypofusion in the brainstem and some parts of the cortex that are markedly different from endogenous depression.

  • McArdle F, Pattwell DM, Vasilaki A, McArdle A, Jackson MJ (2005), "Intracellular generation of reactive oxygen species by contracting skeletal muscle cells", Free Radic Biol Med 2005;39:651–7.

Hooper quotes from this: Any activities associated with increased free-radical production should not be recommended to patients with ME/CFS, as this will intensify the damage. GET is severely damaging for many patients with myalgic encephalomyelitis, as exercising muscle is known to generate increased oxidative stress.

  • Vollmer-Conna U, Piraino BF, Cameron B, Davenport T, Hickie I, Wakefield D, Lloyd AR; for the Dubbo Infection Outcomes Study Group (2008), "Cytokine Polymorphisms Have a Synergistic Effect on Severity of the Acute Sickness Response to Infection", Clinical Infectious Diseases, 47:1418–25, pmid 18937577

A population-based study in Australia concluded, while finding biomedical factors, that: "in contrast, analysis of the influence of psychosocial and environmental factors (including demographic characteristics, socioeconomic status, personality, coping style, mood, and psychiatric history) on illness outcomes showed no significant effects".

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]


Some characteristics of Dutch patient groups

Name Type Patients Accepts Voting Target Actual Connected Main medical Gov funding
Groep ME-Den Haag petitioners 101 n.a. unknown ME ME none n.a. none
ME Vereniging Nederland association 250 ME only members ME ME DBC, GAME, STMER CVS/ME Medisch Centrum none
Stichting ME-de-patiënten foundation 11 n.a. board ME n.a. EMEA unknown none
ME/cvs Vereniging association 3001 all sympathetic members SEID ('ME/cfs') SEID none Stichting Cardiozorg none2
Steungroep ME en Arbeidsongeschiktheid foundation 5001 all sympathetic board SEID ('ME and CFS') CFS none n.a. UWV (projects)
ME/CVS-Stichting Nederland foundation 15001 all sympathetic board SEID ('ME/CFS') CFS/CF Pijn, VK Vermoeidheid Kliniek3 annual subsidy

Notes

  1. estimate
  2. received a project subsidy for Science for Patients
  3. previous main medical: Nederlands Kenniscentrum Chronische Vermoeidheid

Medical guidelines

ME

There exists no medical guidance for ME in The Netherlands. In 2015, the Dutch Parliament assigned the Dutch Health Council to advise on ME. However, the council decided to advise on ME/CFS instead, recommending that the criteria for Systemic Exertion Intolerance Disease (SEID) be adopted.[1][2] The switch was met with heavy criticism.[1] According to the ME Vereniging Nederland, in the absence of guidance specific to ME, the guideline for acquired brain injury should be followed.[3]

Research

There is no government funding for research into ME in the Netherlands.

Research groups

Researchers

Clinicians

Notable patients

  • 1.0 1.1 Twisk, Frank (2018). "Dutch Health Council advisory report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the wrong turn". Diagnostics 8 (2). doi:10.3390/diagnostics8020034. 
  • Gezondheidsraad (Den Haag, 2018). "ME/CVS". https://www.gezondheidsraad.nl/documenten/adviezen/2018/03/19/me-cvs. 
  • Coronel Instituut (2012), "Niet-Aangeboren Hersenletsel en Arbeidsparticipatie"