In een overzichtsartikel vat dr. Alison Bested
de stand van zaken m.b.t. ME/CVS voor collega's samen:
diagnose (volgens de Canadese richtlijnen), de prognose, de etiologie (oorzaken) en
de behandeling (met name gericht op symptoombestrijding, bestrijden van infecties, etc.)
Dr. Bested maakt in haar dagelijkse praktijk onder meer gebruik van onderstaande formulieren,
die ze me via e-mail toestuurde (verspreiding uitsluitend met bronvermelding):
Functional Capacity Scale:
Clinical Criteria Worksheet:
checklist Canadese Criteria.
Review of Myalgic Encephalomyelitis/chronic fatigue syndrome:
an evidence-based approach to diagnosis and management by clinicians.
Rev Environ Health. 2015 Dec 1;30(4):223-249. doi: 10.1515/reveh-2015-0026.
Bested AC, Marshall LM.
This review was written from the viewpoint of the treating clinician
to educate health care professionals and the public
about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
the clinical definition of ME/CFS with emphasis on how to diagnose ME/CFS;
the etiology, pathophysiology, management approach,
long-term prognosis and economic cost of ME/CFS.
After reading this review,
you will be better able to diagnose and treat your patients with ME/CFS
using the tools and information provided.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
is a complex, chronic medical condition characterized by symptom clusters that include:
pathological fatigue and malaise that is worse after exertion,
cognitive dysfunction, immune dysfunction, unrefreshing sleep, pain,
autonomic dysfunction, neuroendocrine and immune symptoms.
ME/CFS is common, often severely disabling and costly.
The Institute of Medicine (IOM) reviewed the ME/CFS literature and
estimates that between 836,000 and 2.5 million Americans have ME/CFS
at a cost of between 17 and 24 billion dollars annually in the US.
The IOM suggested a new name for ME/CFS and
called it Systemic Exertion Intolerance Disease (SEID).
SEID's diagnostic criteria are less specific and
do not exclude psychiatric disorders in the criteria.
The 2010 Canadian Community Health Survey discovered that
29% of patients with ME/CFS had unmet health care needs and
20% had food insecurity - lack of access to sufficient healthy foods.
ME/CFS can be severely disabling and cause patients to be bedridden.
Yet most patients (80%) struggle to get a diagnosis
because doctors have not been taught how to diagnose or treat ME/CFS
in medical schools or in their post-graduate educational training.
Consequently, the patients with ME/CFS suffer.
They are not diagnosed with ME/CFS and are not treated accordingly.
Instead of compassionate care from their doctors,
they are often ridiculed by the very people from whom they seek help.
The precise etiology of ME/CFS remains unknown,
but recent advances and research discoveries are beginning to shed light on
the enigma of this disease including the following contributors:
infectious, genetic, immune, cognitive including sleep, metabolic and biochemical abnormalities.
Management of patients with ME/CFS is supportive symptomatic treatment
with a patient centered care approach
that begins with the symptoms that are most troublesome for the patient.
Pacing of activities with strategic rest periods
is, in our opinion, the most important coping strategy patients can learn
to better manage their illness and stop their post-exertional fatigue and malaise.
Pacing allows patients to regain the ability
to plan activities and begin to make slow incremental improvements in functionality.
case definition; chronic fatigue syndrome; myalgic encephalomyelitis; pathophysiology and treatment; SEID