ME in Denmark

Discussion in 'Fibromyalgia Main Forum' started by tansy, Nov 12, 2008.

  1. tansy

    tansy New Member

    THE ME SITUATION IN DENMARK - 17 years after official recognition.

    Myalgic Encephalomyelitis (ME) was officially recognized and listedby the Danish NIH in 1992 under the WHO ICD-10 code G93.3. However, the term ME/CFS was adopted by the Danish Association in 1992,who assumed that ME and CFS were identical diseases and a set of clinicalcriteria for ME/CFS was created, which was recognized and used formany years to diagnose ME.

    Because of the confusion in terms, far too many patients live with the dubious honor of having up to 5 different diagnostic terms written in their journals - depending on which doctors they have seen:
    Chronic Tiredness Syndrome (Danish translation of CFS)
    Postviral Tiredness Syndrome
    Chronic Tiredness

    And only God knows how many of these patients actually suffer from ME. "Never heard of it!", is the reply most doctors in this country give when asked about ME.

    Also, you might find the result of a 17 year follow-up inquiryinteresting and thought-provoking:- No doctor diagnoses ME in Denmark anymore.- No doctors in Denmark even seem to know what ME is.- None of the four so-called ME/CFS Expert Centers in Denmark (all units of infectious diseases departments at university hospitals) either diagnose or treat ME.- Most patients are diagnosed with either CFS, ME/CFS or Chronic Tiredness syndrome.

    One ME/CFS Expert Center uses the Danish clinical criteria for ME/CFS for diagnostic purposes.- Three ME/CFS Expert Centers use the CDC Fukuda criteria for diagnostic purposes.

    The four ME/CFS Expert Centers were asked, which examination programmeand treatment protocol they used. All four units replied, that they are looking for active infections, examining to exclude organic diseases, did not have any particular treatment protocol (as they considered the disease to be "untreatable") other than reating active infections - if no active infections are found, the patient is discharged to their attending PG.

    Asking the patients in question, they when turning up in their PG's office after being discharged from hospital - most often were referred to a psychiatrist or a psychologist. One of the ME/CFS Experts Centers almost immediately referred to the psychiatric unit, housing the Danish answer to Simon Wessely, Per Fink, who is responsible for the well known, and much hated, TERM model.

    Now, how could this situation come about? We think it is due to a combination of three things:

    1. The use of the ME/CFS term in Denmark - assuming ME and CFS to be identical disease entities. CFS simply took over.

    2. The influence from the massive Wessely inspired psychiatric lobby during the last 10-12 years.

    3. The complete lack of correct medical information to oppose the assumption that ME/CFS is a functional and behavioural problem.

    It has been a heart-breaking experience to follow this ME-down-the-drain-evolution in Denmark and to watch the ME patients (children and adults) being totally ignored - and totally confused about which disease they in fact suffer from.

    We simply have to ask:

    Would this have happened if we had stuck to the term ME as it was recognized and listed by our NIH in the first place?

    Does this form a pattern that other countries ought to be aware of? We certainly think so!

    Kind regards
    Lajla MarkME
    Rebecca Hansen
    ME Consultant
  2. bigmama2

    bigmama2 New Member

    oy vey! what a mess!