European Research and Healthcare Policies for Myalgic Encephalomyelitis: An Alarming Indictment

European ME Alliance Releases Disturbing Findings on Myalgic Encephalomyelitis Across Europe

Stockholm, 7 April 2024 – The European ME Alliance (EMEA) has released the results of a comprehensive survey that sheds light on the concerning state of Myalgic Encephalomyelitis (ME, also known as ME/CFS) patients across Europe. The survey, conducted among over 11,000 individuals with ME/CFS, reveals a distressing lack of recognition and support for those suffering from this debilitating disease.

According to the survey, three out of four patients (74%) feel that they have received little to no health care support, while only one out of eight (12%) report good or very good support. These findings are a stark indictment of European and national policies that have neglected the ongoing and protracted suffering of millions of ME/CFS patients and their families.

In light of these alarming results, EMEA is calling on governments, healthcare providers, research agencies, healthcare policymakers, healthcare ministers, politicians, and European organizations to work together with EMEA and take action to address the unmet needs of ME/CFS patients.

The survey also reveals 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 failure of healthcare systems to adequately address the needs of ME/CFS patients has serious consequences, as highlighted by the survey results.

Without objective diagnostic tests, verified biomarkers, or curative medications, healthcare support is crucial for managing symptoms and improving functional capacity. Early diagnosis, activity management (pacing), and avoidance of over-exertion (post-exertional malaise) are key to reducing the risk of progression to severe disease.

However, the survey found that keeping activity levels within the energy envelope, also known as pacing, emerged as the most beneficial strategy for managing the condition. Conversely, activity-based therapies were found to exacerbate symptoms, with almost half of respondents reporting a deteriorating course of illness as a result.

The survey also refutes the Biopsychosocial (BPS) model, labeling it as a failed and harmful approach to ME/CFS. Therapies involving fixed increases in activity were shown to worsen symptoms, emphasizing the importance of pacing and avoidance of over-exertion.

Persistent myths about ME/CFS being an illness that gradually “burns out” and that patients recover over time are also refuted by the survey. While some patients may improve over time, the majority do not, and symptoms can last a lifetime.

The lack of recognition of ME/CFS as a serious physical illness in many countries denies patients a timely diagnosis and access to adequate social and welfare benefits necessary for basic survival, violating their basic human right to the best available health. The survey reveals that long delays in diagnosis from disease onset are common, averaging 6.8 years across Europe with large variations across countries.

ME/CFS must be viewed as a chronic condition, as this perception has major implications for welfare benefits and other services provided. EMEA is calling for 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, as well as the development and implementation of a standardized diagnostic and treatment protocol.

The survey highlights the urgent need for a pan-European epidemiological study, using the most up-to-date diagnostic criteria, to determine the prevalence and cost burden of ME in Europe. EMEA has previously demonstrated in its ‘ME/CFS in Europe’ webinars that it is entirely possible for all European countries to implement SNOMED criteria to ascertain the correct prevalence figures.

EMEA urges policymakers and healthcare stakeholders across Europe to take note of these findings and take urgent action to improve the lives of ME/CFS patients. As we celebrate World Health Day 2024, under the slogan ‘My health, my right,’ this first-ever pan-European survey highlights 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 violation of human rights for these citizens, who should not be left behind as the world works towards achieving Universal Health Coverage and the 2030 United Nations Sustainable Development Goals.

Distributed by

Share this article
Shareable URL
Prev Post

How Digital Finance Has Changed Lives

Next Post

Shropshire’s Digital Landscape Transformed with Ditton Priors Gigabit Broadband

Read next