11,000 participants from 44 countries
The results of a survey conducted by the European ME
Alliance (EMEA) among more than 11,000 ME/CFS sufferers from 44 countries were
recently published in a detailed report. The survey was conducted online
between May and August 2021 and asked sufferers in 15 different languages
about their symptoms, disease severity, disease progression and factors
influencing the disease, such as medical care and therapies used.
Sample and procedure
Both those affected with a ME/CFS diagnosis and those who were still in the diagnostic process were able to take part. The sample size varied greatly between the different countries. In ten countries the number of participants was comparatively large (> 400): Denmark, Finland, France, Germany, Norway, Spain, Sweden, the Netherlands, Great Britain (and the USA, as the questionnaire was also advertised internationally in English).
In these countries there were comparatively active patient organizations that took over recruitment. The geographical uneven distribution of participants could also be related to the fact that the situation of those affected in southern and eastern European countries is even more precarious than in northern and western European countries. For example, 97% of participants from Great Britain had a ME/CFS diagnosis, while in Croatia only 32% had received a diagnosis.
The average time to diagnosis also varied greatly (UK, Ireland: 5 years, Croatia: 12 years). At the country level, there was a correlation between longer time to diagnosis and a progressive course of ME/CFS symptoms, i.e. an increasing severity of the disease.
Key findings
Regarding the main symptoms of ME/CFS, those affected felt the most limited by PEM and sensitivity to light, smells and noise. A quarter of respondents reported mild symptoms (according to ICC criteria, this means a deterioration of at least 50% compared to before the illness). 54% had moderate symptoms (mainly housebound) and 16% severe symptoms (mainly bedridden). Almost half (46%) of respondents reported a progressive course. Only 7% reported an improvement over time.
Another key finding concerns the care situation of those affected.
Since the vast majority of participants had moderate to severe ME/CFS symptoms, they were dependent on medical, state and private support. 94% of respondents had sought contact with medical personnel because of ME/CFS.
However, three quarters (74%) stated that they received little or no medical care, while only 12% reported a good or very good care situation. Here, too, there were major differences between countries: while 65% of respondents in Norway stated that they received no medical support, the figure was 91% in Austria. An early diagnosis was associated with a better prognosis, while conversely a delayed diagnosis (3–10 years after the illness) was a risk factor for a more severe illness. Symptom management and pacing improved the prognosis.
Social services (e.g. childcare, social work) were rated as inadequate in all countries, and in no country did more than 10% of respondents report receiving good support through social services. Support was also lacking in the workplace and schools in all countries. In the private sphere, satisfaction was higher: 60% reported good support from family members.
Support from family, friends and other affected people helped those affected to stay within their energy limits and avoid PEM.
Overall, pacing was seen as the most helpful strategy for dealing with the illness. However, those affected often found it challenging to pace successfully and avoid crashes in view of family, financial and other obligations. Activation therapy (GET) and cognitive-behavioral therapy (CBT) for treating/”curing” ME/CFS was experienced as harmful by three quarters of respondents and as helpful by only 5%, while 38% found CBT helpful as a supportive (not curative) measure.
In summary
In summary, the survey across 44 European countries shows that people affected by ME/CFS are severely restricted and under-cared for. A comparison of countries showed great parallels in terms of the severity of the disease, demographic characteristics and factors with a positive correlation with the course of the disease (coping, pacing, social support from family, friends and other affected people).
The lack of support in the medical and social sectors found throughout Europe must be compensated for by support in the private environment, which is not sufficiently possible for many affected people.
An appeal
The authors appeal to European governments that ME/CFS must be recognized as a serious chronic disease and that those affected must receive more medical care, financial support and social benefits. The care situation differs between European countries, with the highest satisfaction among participants from northern European countries (Sweden, Norway, Iceland).
The study shows that the different approaches of different governments can influence the course and prognosis of the disease.
The authors discuss that the incorrect but still widespread understanding of ME/CFS as a psychosomatic illness probably plays a large part in the precarious situation of those affected. The biopsychosocial model (BPS) of ME/CFS attributes responsibility for their illness to those affected, which could contribute to a lack of empathy on the part of medical and governmental actors.
Based on the BPS model, which advocates more activity to overcome dysfunctional beliefs about the illness, offers of help and social services are seen as a hindrance to those affected. As a consequence, those affected are left alone with their symptoms, which in turn creates stress and makes pacing more difficult.
Limitations
When interpreting the results, it must be taken into account that participants were recruited via social media and that (very) severely affected people as well as undiagnosed sufferers are potentially underrepresented. In addition, those affected in different countries are networked to varying degrees, so there are large differences in the number of participants depending on the country.
The German Society for ME/CFS also called for participation and would like to thank all participants.
The full EMEA-report ca be read here
Source: Deutsche Gesellschaft für ME/CFS
The ME Global Chronicle 