EMEA Releases Comprehensive Survey Exposing Neglect of ME Patients in Europe
Stockholm, 7 April 2024 – The European ME Alliance (EMEA) has released the findings of a comprehensive survey that shines a light on the distressing state of Myalgic Encephalomyelitis (ME) patients across Europe. The survey, conducted among over 11,000 individuals with ME/CFS in Europe, reveals a concerning lack of recognition and support for those suffering from this debilitating disease.
The results from the survey paint a stark picture of the overwhelming challenges faced by people with ME/CFS in Europe. Three out of four patients (74%) reported receiving little or no healthcare support, while only 1 out of 8 (12%) received good or very good support. This failure of healthcare systems to adequately address the needs of ME/CFS patients has serious consequences, as highlighted by the survey results.
The survey also revealed significant disparities in access to medical care and social support across Europe, with varying approaches by national health authorities influencing the course of illness and disease outcomes. This highlights the urgent need for healthcare systems to recognize ME/CFS as a severe physical illness and enhance medical care, financial support, and social services. It also calls for a fully funded long-term strategy for biomedical research into this disease.
The survey found that early diagnosis, activity management (pacing), and avoidance of over-exertion are key to preventing progression to severe disease. The most beneficial strategy for managing the condition was found to be keeping activity levels within the energy envelope, known as pacing. Conversely, activity-based therapies were found to exacerbate symptoms, with almost half of respondents reporting a deteriorating course of illness as a result. This strongly refutes the Biopsychosocial (BPS) model, labeling it as a failed and harmful approach to ME/CFS.
The lack of recognition of ME/CFS as a serious physical illness in many countries denies patients timely diagnosis and access to adequate social and welfare benefits necessary for basic survival. This violates their basic human right to the best available health. The survey also revealed that long delays in diagnosis from disease onset are common, averaging 6.8 years across Europe with large variations across countries.
EMEA is calling on European governments to fund and develop new Centres of Excellence for ME/CFS to perform a joined-up pan-European strategy of coordinated, collaborative translational biomedical research. This will assist in building the capacity of research resources within Europe and creating the foundations for making progress in establishing European fundamental research into ME/CFS.
EMEA also urges the creation of a specialist discipline for ME in all European countries, with at least one specialist clinical center attached to centers of excellence in each country. This should also include the development and implementation of a standardized diagnostic and treatment protocol. Additionally, EMEA is calling for a pan-European epidemiological study to determine the prevalence and cost burden of ME in Europe.
As we celebrate World Health Day 2024, under the slogan ‘My health, my right,’ this first-ever Pan-European survey underscores the urgent priority for healthcare systems to recognize ME/CFS as a serious physical illness and provide better medical care, financial support, and social services, as well as a fully funded long term strategy of biomedical research into this disease.
Ignorance, apathy, and a lack of research toward myalgic encephalomyelitis in Europe must not be allowed to continue. Failure to act decisively now will perpetuate unnecessary suffering and neglect of people with ME/CFS – a clear abuse violation of human rights for these citizens, who should not be left behind as the world works towards achieving Universal Health Coverage to achieve the 2030 United Nations Sustainable Development Goals.
Derick is an experienced reporter having held multiple senior roles for large publishers across Europe. Specialist subjects include small business and financial emerging markets.