The following is information and news published by Kim McCleary, the President of the CFIDS Association of America on the International Consensus Criteria Published for Myalgic Encephalomyelitis. Excerpts and the link you will find below:
On July 20, 2011, the Journal of Internal Medicine e-published ahead of print “Myalgic Encephalomyelitis: International Consensus Criteria.” The panel of authors, led by coeditors Bruce M. Carruthers, MD, CM, FRCP(C) and Marjorie I. van de Sande, BEd, GradDip Ed, includes 26 authors from Australia (3 authors), Belgium (1), Canada (4), Chile (1), Ireland (1), Italy (1), Japan (1), Korea (1), Latvia (1), New Zealand (1), Norway (1), the United Kingdom (2) and the United States (8). The paper specifically cites 123 publications to support its recommendations.
The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50,000 ME patients, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi type process.
New Criteria Overview
ME is described as “an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.”
Of particular note is that other definitions have established a minimum duration of illness (either four or six months). The new ME definition removes this requirement: “…diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact.” One of the questions arising from the new definition is whether individuals with a more transient illness will be considered to have ME.
Diagnosis begins with assessment of post-exertional neuroimmune exhaustion (PENE), rather than fatigue. “Post-exertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport. The normal activity/rest cycle, which involves performing an activity, becoming fatigued, and taking a rest whereby energy is restored, becomes dysfunctional.”
In addition to the required feature of PENE, the individual must have seven other symptoms: three that demonstrate neurological impairment; three that demonstrate immune impairment; and one that demonstrates energy production/transport impairment. These are described more fully below. The term “atypical ME” is used when an individual “meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.”
The paper provides severity subgroups: “Symptom severity impact must result in a 50 percent or greater reduction of a patient’s premorbid activity level for a diagnosis of ME. Mild: approximately 50 percent reduction in activity; Moderate: mostly housebound; severe: mostly bedbound; and Very Severe: bedbound and dependent on help for physical functions.”
Special considerations are noted for making the diagnosis in the pediatric setting, including guidelines about distinguishing ME from school phobia.
The following co-occurring conditions are identified: “Fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, Raynaud’s phenomenon, prolapsed mitral valve, migraines, allergies, multiple chemical sensitivities, Hashimoto’s thyroiditis, Sicca syndrome, reactive depression. Migraine and irritable bowel syndrome may precede ME but then become associated with it. Fibromyalgia overlaps.” From reading the text, it does not appear that this list is intended to represent the only comorbid conditions that should be considered. For instance, specific forms of orthostatic intolerance (postural orthostatic tachycardia syndrome and neurally mediated hypotension) are referenced in the description of energy production and transport impairments.
As stated earlier, the central feature of ME under this definition is post-exertional neuroimmune exhaustion (PENE). To meet the criteria, an individual must have PENE, described in the following manner: “This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.”
The individual must demonstrate neurological impairment by meeting a total of at least three symptoms from three of these four categories:
1. Neurocognitive impairment
a. Difficulty processing information: slowed thought, impaired concentration
b. Short-term memory loss
b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates.
3. Sleep disturbance
4. Neurosensory, perceptual and motor disurbances
a. Neurosensory and perceptual
The individual must demonstrate immunological impairment by meeting a total of at least three symptoms from three of these five categories:
1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion
2. Susceptibility to viral infections with prolonged recovery periods
3. Gastointestinal tract
5. Sensitivities to food, medications, odours or chemicals
The individual must have one of the following symptoms that demonstrate energy production/transport impairment:
3. Loss of thermostatic stability
4. Intolerance of extremes of temperature
Further descriptions of each of these symptom clusters are provided in Table 1 that accompanies the text. (Table 1 has been reproduced by the CFIDS Association of America under limited license from John Wiley & Sons, Inc., publisher of the Journal of Internal Medicine. Copyright to the original material and all other rights reserved by John Wiley & Sons, Inc.)
The authors also provide additional directives for applying these symptom lists in clinical settings vs. research settings. The panel is at work on Physicians Guidelines and an International Consensus Symptom Scale. They specifically state that only subjects who fully meet ME criteria should be included in epidemiological research.
To read the rest of the information, click the link below.