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New Criteria for ME: Important Tool for Researchers/Clinicians

Discussion in 'Action Alerts and Advocacy' started by Ember, Oct 31, 2011.

  1. Ember

    Ember Senior Member

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


    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
     
    HTree likes this.
  2. floydguy

    floydguy Senior Member

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    The cardinal issue is still a symptom. ICC is a step in the right direction but until the dx is made through proven diagnostic testing such as low NKC function and low VO2 max, ME (CFS) will continue to be a wasteland diagnosis. PENE still appears to be based on subjective feedback from patients (ie symptoms, not objective testing). IMO real progress in respectability won't be made until this change is made.
     
  3. Ember

    Ember Senior Member

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    Esme seems to me to be way ahead of other advocacy organizations here. (They begin to restore my faith...!)

    In their vision statement, Coalition4ME/CFS still commits to advocate for a national strategy for ME/CFS and for the adoption of the Canadian Consensus Document. They still commit to promote a new name for this illness that is more appropriate and does not trivialize or give misconceptions (http://coalition4mecfs.org/JoinUs.html).

    Perhaps Europe is less invested in CFS and the CCC.
     
  4. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
    I agree that this exhortation by ESME to adopt the ICC and the term "ME" is exactly what we need. I pray that all other advocacy orgs adopt this stance.
     
  5. The ICCME are still just criteria. They are not the disease itself, nor are they a diagnostic protocol.

    It's a big step forward, but we aren't quite there yet.
     

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