By David Tuller, DrPH
Earlier this month, the European Myalgic Encephalomyelitis Alliance (EMEA) released a 235-page report on a survey of ME/CFS patients in Europe titled “Same disease, different approaches and experiences.” The authors are Arild Angelsen, a board member of the Norwegian ME Association and a professor at the School of Economics and Business at Norwegian University of Life Sciences, and Trude Schei, assistant secretary general of the Norwegian ME Association. (Contact: post@ME-foreningen.no)
More than 11,000 people from 44 countries responded to the online survey, which was conducted between May and August of 2021. A small minority were from three non-European countries: the US (486 respondents), Canada (156), and Australia (90). The executive summary is an excellent overview of the overall findings; the bulk of the report provides specifics for each country separately. Here is some background information from the foreward:
In the world of Myalgic Encephalomyelitis (ME or ME/CFS), where decades of misinformation, ignorance, bias and stigma have been allowed to develop and grow without challenge, and eventually influence and then swamp healthcare systems, government policies and media prejudice, people affected by this disease have been left without moral, economic and healthcare support.
The advent of social media has levelled the field somewhat, allowing patient groups to challenge the orthodox view of ME/CFS.
However, the continued lack of any adequate funding for research into the disease, and no serious attempt to find the cause of the disease by national research agencies or policymakers, has led to the lack of the one essential element that is needed to change policies in government.
That element is evidence.
The European ME Alliance (EMEA) survey of ME/CFS patients in Europe is a first attempt by patient organisations to bring forward information that can be applied by governments in Europe, and by EU institutions, in order for them to take responsibility for addressing this high burden, under prioritised disease and provide the needed research funding, medical education of physicians, and social support for patients.
The objective behind the survey was to find out whether the situation for ME/CFS patients was similar across European countries.
The other day, I interviewed the two authors about their findings.