The new European ME/CFS Alliance

Discussion in 'Fibromyalgia Main Forum' started by tansy, Nov 17, 2008.

  1. tansy

    tansy New Member

    Press Release

    The European ME Alliance is a collaboration of ME
    organisations within Europe who have the common
    aim of promoting biomedical research into Myalgic
    Encephalomyelitis (known as ME or ME/CFS) and
    increasing awareness of this debilitating
    neurological illness.

    The European ME Alliance (EMEA) aims to:

    *) Establish correct recognition of
    myalgic encephalomyelitis as an organic
    illness requiring biomedical research to
    treat and cure

    *) Establish correct diagnosis of patients

    *) Establish specialised biomedical
    centres for education/treatment/cures

    Myalgic Encephalomyelitis is defined by the World
    Health Organisation as a neurological illness
    (code WHO-ICD-10-G93.3). The varying
    symptoms experienced by many severe ME
    sufferers may include:

    post-exertional malaise and loss of muscle power
    with delayed and prolonged recovery, general
    chronic weakness of limbs, neurological
    disturbances, cognitive problems such as memory
    loss & concentration difficulties, problems with
    balance and fine motor control, muscle pain,
    malaise, hypersensitivity, sleep & temperature
    disturbance, cardiovascular symptoms, digestive
    disturbances, visual problems, vocal/muscular

    ME is a very serious illness even in relatively mild
    cases. Research has found that ME-patients
    experience loss of function that is devastating
    and comparable to AIDS and late-stage cancer.
    ME has a prevalence of 0.4% of the population
    with many of the sufferers being children. It is
    the major cause for long term absence from
    school for children. In the UK ME is five times more
    prevalent than HIV/AIDS.

    25% of people diagnosed with ME may be
    severely affected:

    house-bound, often bed-bound, left with little help
    from the medical community, often made to
    struggle to obtain benefits and left to an uncertain
    and debilitating future.

    ME is estimated to cost European economies billions
    of Euros every year.

    ME is a multi-system illness and distinct sub groups
    have been identified and some treatments have been
    shown to be effective. To establish more
    comprehensive treatments and cures for these and
    other sub groups requires investment in biomedical

    Yet no public funding of biomedical research is
    currently taking place in Europe so biomedical
    research projects are funded solely by the private
    grants to individual researchers and from ME support
    groups and individuals.

    With little funding of biomedical research into ME
    within Europe the EMEA are hoping to attract more
    support for research activities and hope to convince
    governments to recognize the necessity for a
    European biomedical research s trategy to cure this

    ME needs more awareness from the public,
    politicians and healthcare staff. We invite other
    organisations across Europe to support our
    objectives to change the perception of this illness
    and force change in government policies and accept
    the urgent need for biomedical research into the
    illness in order to establish treatments and cures for
    this devastating illness.

    Member organisations of EMEA have agreed the
    following principles:

    *) Members of the European ME Alliance
    endorse the principles of the 2003
    Canadian Consensus Document for
    Diagnosis and Treatment for ME/CFS.

    *) Members of the European ME Alliance
    endorse the principles of the 2006
    paediatric definition from Dr Leonard
    Jason et al.

    *) Members of the European ME Alliance
    promote the fact that ME (myalgic
    encephalomyelitis) is a neurological
    illness in the World Health
    Organisation?s International
    Classification of Diseases.

    *) Members of the European ME Alliance
    understand the necessity to use the
    composite term ME/CFS at the moment
    for ease of reference/standardisation.

    *) Members of the European ME Alliance
    support biomedical research into
    establishing sub groups of ME/CFS which
    will lead to treatments and cures for this

    *) The European ME Alliance has, as an
    objective, the preparation and
    promotion of a common set of
    documentation, in all languages, for
    Alliance use that is supplemented by local

    The founding members of the European ME Alliance

    Belgium ME-Patientenvereniging

    Denmark ME-NetDK

    Ireland Irish ME Trust

    Germany Fatigatio e.V.

    Norway Norges ME-forening

    Sweden Riksfreningen fr ME-patienter

    UK Invest in ME

    More details will be available in the coming months
    on our web site at
  2. karinaxx

    karinaxx New Member

    i was very pleased when i got this same news in my email this morning. I agree with every thing on their agenda and was very happy for their support of the Canadian Consesus D.
    Very, very good and so much needed
    by karina
  3. babyk902

    babyk902 New Member

    i think that's wonderful and that was a very profound and concise description of CFS/ME, since it is so hard to put into words for those who don't know what it is. I hope that they can take this illness more seriously and really put some money into it, if it is true that it is as serious as AIDS/HIV or even Cancer, then i think it certainly deserves to be a recognized illness and especially with some respect, rather than recieving the typical assumption that it is all in our heads.. i hope that one day we can find an answer but i think maybe we're on the right path
  4. Bluebottle

    Bluebottle New Member

    Great news!
  5. Lijda

    Lijda New Member

    Really great news!!

  6. findmind

    findmind New Member

    This is indeed the only and correct way to go;now, how is it going to get the funding needed?

    Are their any bills from Parliment that would help?

    Great writeup: thanks for sending it our way...especially since the criminal CDC seem to be having their way with us by downgrading the criteria for ME/CFS to be a "tired syndrome". The idiots.

    Be well...or as well as can be with ME/CFS, which means be brave.

  7. Leaknits

    Leaknits New Member


    Great write-up!

    I looked but couldn't find info as to whether or not EMCA is going to follow NICE (National Institutes for health and Clinical Excellence) guidelines.

    I'm hoping the answer is "No" since I have several issues with the NICE guidelines and only one of those is CBT, Cognitive Behavioral Therapy.

    When, please, whatever higher power that holds sway over such things, is it going to be understood these d'ds are not quote "all in our minds" end quote?

    Thank you for bringing this article here!

  8. jasminetee

    jasminetee Member

    Yea! This is fantastic! Now we just need to get all the good orgs in all the countries to join together and fight the good fight. UNITED WE STAND! (or lay in our case) ;)

    [This Message was Edited on 11/21/2008]
  9. tansy

    tansy New Member

    will challenge the NICE guidelines and others like them. This alliance does not support CBT as used in various European countries to treat functional somatic disorders (hysteria and pscychosomatic).

    Invest in ME is an excellent organisation and they would not have been involved in the setting up of the European Alliance if they felt it was not in the best interest of patients with ME.

    tc, Tansy