Vandaag verscheen de primer van de Internationale Consensus-criteria (ICC) voor ME.
De primer geeft nadere uitleg over de ICC aan medici (o.m. in de vorm van testen).
Voor de primer klik op onderstaande afbeelding:
Voor een grote versie van de samenvatting van de criteria, klik op onderstaande afbeelding:
International Consensus Criteria (ICC)
Problem
The label 'chronic fatigue syndrome' (CFS), coined in the 1980s,
has persisted due to lack of knowledge of its etiologic agents and pathophysiology.
Misperceptions have arisen
because the name 'CFS' and its hybrids ME/CFS, CFS/ME and CFS/CF
have been used for widely diverse conditions.
Patient sets can include those who are seriously ill with ME,
many bedridden and unable to care for themselves,
to those who have general fatigue or, under the Reeves criteria,
patients are not required to have any physical symptoms.
There is a poignant need to untangle the web of confusion
caused by mixing diverse and often overly inclusive patient populations
in one heterogeneous, multi-rubric pot called 'chronic fatigue syndrome'.
We believe this is the foremost cause of diluted and inconsistent research findings,
which hinders progress, fosters scepticism, and wastes limited research monies.
Solution
The rationale for the development of the ICC
was to utilize current research knowledge
to identify objective, measurable and reproducible abnormalities
that directly reflect the interactive, regulatory components of
the underlying pathophysiology of ME.
Specifically, the ICC select patients
who exhibit explicit multi-systemic neuropathology,
and have a pathological low threshold of physical and mental fatigability
in response to exertion.
Cardiopulmonary exercise test-retest studies
have confirmed many post-exertional abnormalities.
Criterial symptoms are compulsory and
identify patients who have greater physical, cognitive and functional impairments.
The ICC advance the successful strategy of the Canadian Consensus Criteria (CCC)
of grouping coordinated patterns of symptom clusters that identify areas of pathology.
The criteria are designed for both clinical and research settings.
1. Name:
Myalgic encephalomyelitis, a name that originated in the 1950s,
is the most accurate and appropriate name
because it reflects the underlying multi-system pathophysiology of the disease.
Our panel strongly recommends that
only the name 'myalgic encephalomyelitis' be used
to identify patients meeting the ICC
because a distinctive disease entity should have one name.
Patients diagnosed using
broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.)
should be reassessed with the ICC.
Those who fulfill the criteria have ME;
those who do not would remain in the more encompassing CFS classification.
2. Remove patients who satisfy the ICC from the broader category of CFS.
The purpose of diagnosis is to provide clarity.
The criterial symptoms,
such as the distinctive abnormal responses to exertion
can differentiate ME patients
from those who are depressed or have other fatiguing conditions.
Not only is it common sense to
extricate ME patients
from the assortment of conditions assembled under the CFS umbrella,
it is compliant with the WHO classification rule
that a disease cannot be classified under more than one rubric.
The panel is not dismissing the broad components of fatiguing illnesses,
but rather the ICC are a refinement of patient stratification.
As other identifiable patient sets are identified and supported by research,
they would then be removed from the broad CFS/CF category.
3. Research on ME:
The logical way to advance science is
to select a relatively homogeneous patient set
that can be studied to identify
biopathological mechanisms, biomarkers and disease process
specific to that patient set,
as well as comparing it to other patient sets.
It is counterproductive to use inconsistent and overly inclusive criteria
to glean insight into the pathophysiology of ME
if up to 90% of the research patient sets may not meet its criteria (Jason 2009).
Research on other fatiguing illnesses, such as cancer and multiple sclerosis (MS),
is done on patients who have those diseases.
There is a current, urgent need for
ME research using patients who actually have ME.
4. Research confirmation:
When research is applied to patients satisfying the ICC,
previous findings based on broader criteria will be confirmed or refuted.
Validation of ME being a differential diagnosis,
as is multiple sclerosis (MS), or a subgroup of chronic fatigue syndrome,
will then be verified.
5. Focus on treatment efficacy:
With enhanced understanding of
biopathological mechanisms, biomarkers and other components of pathophysiology
specific to ME,
more focus and research emphasis
can target expanding and augmenting treatment efficacy.
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