Il "primer for physicians" è un vademecum, tipo sillabario, per i medici di medicina generale, i medici di famiglia; sarebbe da diffondere per aiutare i medici di famiglia nella gestione di questa malattia e per migliorare la qualità delle conoscenze a riguardo.
Il documento originale e completo è allegato al post.
Development of the International Consensus Primer for Myalgic Encephalomyelitis (ME)
An International Consensus Panel, consisting of clinicians, research investigators, teaching faculty, and an independent
educator, represent diverse backgrounds, medical specialities and geographical regions. Collectively,the members of the
• diagnosed and/or treated more than 50 000 patients who have ME;
• more than 500 years of clinical experience;
• approximately 500 years of teaching experience;
• authored hundreds of peer-reviewed publications, aswell as written chapters and medical books; and
• several members have co-authored previous criteria.
Panel members contributed their extensive knowledgeand experience to the development of the International Consensus
Criteria and this Primer. In addition, an International Symptom Scale will be developed to complementthe criteria and
promote clearer identification of patients for research studies.
Primer Consensus:The authors, representing twelve countries, reached 100 % consensus through a Delphi-type process.
International Consensus Criteria (ICC)
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 seriouslyill 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 confusioncaused 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.
The rationalefor 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 mentalfatigability 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
onlythe 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 thanone rubric. The panel is not dismissing the broadcomponents 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 patientswho 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 theICC, 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.
International Consensus Primer (ICP)
Overly inclusive criteria have created misperceptions, fostered cynicism and have had a major negativeimpact on how ME
is viewed by the medical community, patients, theirfamilies, as well as the general public. Some medical schools do not
include ME in their curriculum with the result thatvery significant scientific advances and appropriate diagnostic and
treatment protocols have not reached many busy medical practitioners. Some doctors may be unaware of the complexity
and serious nature of ME. Patients may go undiagnosed and untreated; they may be shunned or isolated.
The ICP was written to provide clinicians a one-stop, user-friendly reference for ME. It includes a concise summary of
current pathophysiological findings upon which the ICC are based. A comprehensive clinical assessmentand diagnostic
worksheet enables clear and consistent diagnosis ofadult and paediatric patients world-wide. The treatment and
management guidelines offer a blueprint for a personalized, holistic approach to patient care, and include non-pharmaceutical and pharmaceutical suggestions. Patient self-help strategies provide recommendations for energy
conservation, diet, and more. Educational considerations for children are included.
The ICP specifically targets primary care clinicians, as well as specialists in internal medicine. Other medical care
practitioners may find it helpful. Medical school faculties are encouraged to include this primer in their curriculum.
The International Consensus Primer represents the collective wisdom and experience of the members of the panel. They
share their insights into this complex disease gleaned through research and hundreds of thousands of hours of clinical
The International Consensus Panel anticipates that the primer will bring forward movement in enhancingclarity and
consistency of diagnoses and treatment of ME internationally.
Patients: The panel would like to gratefully acknowledge the participation and support of the patients and theirfamilies,
both in the clinical setting and in the research described within, upon which these physicians’ guidelines are based.
Anne-Marie Kemp, BA, M Ed; David Kemp, BA, M Ed: proof-reading
This Primer will be updated when appropriate.