European ME Alliance Press Release
A Voice for ME Patients in Europe
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 limitations.
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 research.
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 strategy to cure this illness.
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 illness.
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 information.
The founding members of the European ME Alliance are –
|Belgium||ME/CFS Association (Nieuwrode, Belgium)|
|Ireland||Irish ME Trust|
|Sweden||Riksföreningen för ME-patienter|
|UK||Invest in ME|
More details will be available in the coming months on our web site at www.europeanmealliance.org or www.euro-me.org.
Last Update: 27 October 2009