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ESME - New Criteria for ME: Important Tool for Researchers/Clinicians

Discussion in 'Action Alerts and Advocacy' started by Jill McLaughlin, Nov 12, 2011.

  1. Jill McLaughlin

    Jill McLaughlin *****

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    "Advocates/patient associations speak with one voice by agreeing to call the disease ME."

    Not ME/CFS. This is for ME; has nothing to do with and rejects ME/CFS. ME should be called and diagnosed as ME.
    This is the antithesis of what the Coalition 4 ME/CFS is proposing via ICD code changes, which will make
    them synonymous terms. ME/CFS does not officially exist as diagnosis, just as another made up term
    that can mean different things. Do not drink the ME/CFS koolaid.

    ME patients should oppose this proposal. It is not necessary to enumerate all of the scientific objections,
    just as stakeholders.
    Contact: NCHS <nchsicd9CM@cdc.gov>, Donna Pickett <dfp4@cdc.gov>
    Deadline is Nov 18.

    ------------------
    http://esme-eu.com/home/new-criteri...-for-researchers-clinicians-article514-6.html

    New Criteria for ME: Important Tool for Researchers/Clinicians
    ESME recommend that: Researchers use the ICC exclusively and call the disease ME in all written documents about their research. Government agencies/foundations give research grants to scientists using the ICC. Government agencies/institutions officially adopt the ICC and post them on official websites. Doctors use the ICC to diagnose patients and write only ME G93.3 in patient journals or in all written documents about these patients. Advocates/patient associations speak with one voice by agreeing to call the disease ME.


    A new, precise set of criteria for Myalgic encephalomyelitis (ME) was published in the October edition of the Journal of Internal Medicine. The new criteria, Myalgic Encephalomyelitis: International Consensus Criteria (ICC), can be seen here: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf A key goal of the ICC are to help researchers to study homogeneous patient sets. They are also an important diagnostic tool for clinicians.

    Marjorie van de Sande, co-editor of the ICC, explains the decision to use the name ME by saying: The name myalgic encephalomyelitis is the most accurate and appropriate name and indicates underlying pathophysiology. It is recognized by the WHO and is consistent their neurological disease classification of ME (ICD G93.3). Even though the name ME came into use in the 1960s, recent research findings further support the name myalgic encephalomyelitis.[1]

    In the last 3 decades, ME as also been called CFS, CFIDS and ME/CFS and there here have been many criteria published, some of which are so inclusive as to be completely useless, i.e. Oxford, Empirical. This created an extremely broad, heterogeneous patient group which caused many complications in the research and treatment of ME. The ICC should solve this problem as they are based on research which shows profound pathological deregulation of the central nervous system, immune and endocrine systems, dysfunction of the cellular energy metabolism and ion transport and cardiovascular abnormalities. [2] The ICC also introduces a new term to describe the unique energy dysfunction that is a hallmark of ME: Post-exertional neuroimmune exhaustion (PENE). This cardinal feature, with its pathologically low threshold of fatiguability and symptom flare in response to exertion,[3] is nowcompulsory for a diagnosis. The definition also requires 3 immune, 3 neurological and 1 energy transport symptom to be present. By precisely defining the dysfunctions that are characteristic of true ME patients, the ICC gives scientists and clinicians a valuable tool to work with ME.

    It is now necessary to build up a body of work/information using these criteria. The European Society for ME (ESME) therefore encourages researchers, doctors, government agencies, patient groups, etc. to do their part to make this happen by using the ICC exclusively.

    We recommend that:

    Researchers use the ICC exclusively and call the disease ME in all written documents about their research.

    Government agencies/foundations give research grants to scientists using the ICC.

    Government agencies/institutions officially adopt the ICC and post them on official websites.

    Doctors use the ICC to diagnose patients and write only ME G93.3 in patient journals or in all written documents about these patients.

    Advocates/patient associations speak with one voice by agreeing to call the disease ME.

    The ICC panel is currently developing comprehensive Physicians Guidelines which will include steps in diagnosis, biotests, treatment and management protocols, the International Consensus Symptoms Scale and other useful appendices, etc. The goal is to develop concise but comprehensive user-friendly physician guidelines (handbook), which include the ICC and are specifically designed to complement them.[4]

    About the ICC:

    The ICC were written by a group of 25 doctors/scientists from 13 countries who, collectively, have 400 years of both clinical and teaching experience, have authored hundreds of peer-reviewed publications and have diagnosed or treated approximately 50,000 patients. The ICC are for both adults and for children and addresses some of the special considerations for children.

    About ME:

    Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology.[5]

    About ESME:

    ESME is a unique professional European non-profit organization whose purpose is to collect know-how in the domain of ME (Myalgic Encephalomyelitis). ESMEs goals are to stimulate scientific research, inform and train doctors and other medical personnel, patients & public, promote cooperation between EU & international partners , provide professional & uniform information and strive to ensure professionalism in all layers of ME business. www.esme-eu.com



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