Journal of IiMER June 2024 The health care system fails the ME/CFS patients – and that has serious consequences 3 out of 4 patients (74%) felt they received little or no health care support, while only 1 out of 8 (12%) had experience good or very good support. The dissatisfaction is high across most countries, and even in the best scoring countries (Norway, Iceland and Sweden), about 65% state that they received poor health care support. Yet some differences are notable, indicating that the public approach matters. This is illustrated by the difference found in an otherwise rather homogenous Nordic region. The portion of respondents reporting that they received no help varies from 15-21% in Iceland, Norway and Sweden, to 35% in Finland and more than half (53%) in Denmark. The latter is known for a strong biopsychosocial approach, where ME/CFS is considered a functional illness by the Danish health authority. On the positive side, patients with a more recent onset or diagnosis are less dissatisfied with the health care provided, which may suggest a modest improvement over time. While no objective diagnostic tests, verified biomarkers, curative medications or treatments for ME/CFS exist, health care support matters for the management of the symptoms and the improvement of functional capacity, and thus the course of illness. Respondents experiencing good support from the health care system in their country were more likely to report improvement and less likely to report deterioration. Early diagnostics and disease management critical to improve the course of illness Long delays in the diagnosis were common, with the diagnostic period (from onset to diagnosis) averaging 6.8 years across Europe and large variations across countries. Men are, on average, diagnosed one year earlier than women. Longer delays were associated with a worse course of illness. The risk of experiencing a course of illness characterised by deterioration is more than 50% higher among those with a late diagnosis (10 years or more) compared with those who received an early diagnosis (within 3 years). The survey confirms what several studies (with smaller samples) have found: delayed diagnosis is a risk factor for severe disease. Early and sound advice on the management of the disease, including pacing to avoid Post-Exertional Malaise (PEM), improves the prospects. Patients much more satisfied with support from family, friends and fellow patients 3 out of 5 (60%) stated that they received good or very good support from family members, while 1 out of 4 (25%) had received little or no support. There is a clear relationship between good family support and a lower probability of a deteriorating course of illness (similar to what is observed for health case support); good support in providing daily care and moral support helps staying within the “energy envelope” and avoiding PEM. A similar relationship is observed for support from friends and fellow patients. Keeping the activity level within the energy envelope (pacing) is the most helpful strategy Pacing to avoid post-exertional malaise (PEM) was viewed as the most helpful strategy. 3 out of 4 respondents (75%) considered pacing to have a positive or very positive impact on their course of illness. Successful pacing also requires that the patient knows what pacing is, and – critically – have sufficient help and support from the environment to make pacing possible. While pacing is critical to stabilise the illness, many struggle to find the right balance and adequate support, and experience regular “crashes” and deterioration of their symptoms (PEM). Caring for their family, their financial situation, and stress and worries are factors contributing to the worsening of their symptoms and the overall situation. Invest in ME Research Page 15 of 32
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