The European ME Alliance (EMEA) has produced a lengthy and retailed report based on the online responses of over 11,000 individuals from across Europe (and beyond – in total 44 countries had respondees) and “stands as 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.”
Of respondents the largest numbers came form Norway (3130), Sweden (1332), Germany (1228) and the UK (955 although number not consistent throughout report and 942 used when reporting for UK).
Conclusions –
- The survey highlights profound disability levels and unmet needs among European ME/CFS patients. Findings underscore the urgent priority to recognise ME/CFS as a serious illness and provide better medical care, financial support, and social services.
- Access to medical care and social support varies across Europe, resulting in both a general but dangerous neglect of the illness, with different approaches taken by national health authorities, impacting courses of illness and disease outcomes.
- Therapies involving fixed increases in activity tend to worsen symptoms and risk a deteriorating course of the illness, rather than leading to improvement.
- Early diagnosis, activity management (pacing) and avoidance of over-exertion (PEM) are key to preventing progression to severe disease.
In their press release the EMEA summaried that
Key findings from the survey reveal profound disability levels and unmet needs among ME/CFS patients, highlighting the urgent necessity for healthcare systems to acknowledge ME/CFS as a severe physical illness and enhance medical care, financial support, and social services and pursue a fully funded long-term strategy of biomedical research into this disease.
Furthermore, the survey 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.
The failure of healthcare systems to address adequately the needs of ME/CFS patients has serious consequences, as highlighted by the survey results.While no objective diagnostic tests for ME/CFS, verified biomarkers, curative medications or treatments for ME/CFS exist, healthcare support nevertheless matters for the management of the symptoms and the improvement of functional capacity, and thus the course of illness. Early diagnosis, activity management (pacing) and avoidance of over-exertion (Post-exertional malaise (PEM) are key to reducing the risk of progression to severe disease.
The survey found that keeping activity levels within the energy envelope – commonly 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 strongly refutes the Biopsychosocial (BPS) model, labelling it as a failed and harmful approach to ME/CFS. Therapies involving fixed increases in activity were shown to worsen symptoms, emphasising the importance of pacing and avoidance of over-exertion.
Press Release from the European ME Alliance, 7th April 2024
Specifically for the UK –
- For respondents 97% reported to have an ME/CFS diagnosis, 1% were under evaluation and 2% were ‘self diagnosed’. Average age of particpants was 50.6 years and 85% identified as female, 15% as male, and 1% did not state gender identity.
- On severity of illess and based on International Consensus Criteria (ICC) where “mild” ME means at least a 50% loss of function, “moderate” means that the patient is mostly housebound, “severe” that the patient is mostly bedbound, and “very severe” that the patient is bedbound and in need of care.
3% of respondents said that their disease was better than mild, 24% had mild, 53% moderate, 18% severe and 2% very severe ME/CFS. - Unfortunately, the survey did not ask about cognative problems when querying symptoms which restrict activities in everyday lives but of the points asked about interestingly, pain was rated the least bothersome symptom however the top 3 most common were
- sensitivity to light and sound
- Post-exertional malaise, and
- dizzines when standing or sitting.
- As for triggers, the 942 respondees overwhelmingly gave infectious diease as the main self-reported trigger (620), followed by not sure/unassociated with any particular cause (156), with traumatic life event/stress being the third most common at 116 mentions. Others such as vaccines, accidents/injury/surgery, pregnancy, and underlying diseases were also reported but in much fewer cases.
- The UK average age for onset was 31 years with the range 31 to 40 being the most common (c240), followed by 10 – 20 years (c225), 21 to 30 years (c215), and 41 to 40 years (c170). Over 70 years old was least reported age at onset but could be due to the methodology of the gathering of information.
- Average time from onset to diagnosis was 5.2 years overall, 5.58 years for men and 5 years for women. Average age at diagnosis was 36.1 years.
- Severe or very severe disease was more common among patients who had early onset, regardless of disease duration with those reporting age of onset at 0 to 15 years, those 16 -20, and those 21 to 30 reporting having very severe and severe disease to an extent unseen in other age ranges. For example, for those over 60 who participated none described being severely affected but for 0 to 15 years it was c 25% severe and c5% very severe.
At average age of onset – 31 (being in age range 31 to 40) the majority (over 50%) described themselves as modeartely affected, mildly affected was next, followed by severe, better than mild and lastly, very severely affected. - In the UK, 72% of respondents had experienced deterioration or major fluctuations, 23% said they were mostly stable, and 5% had experienced mainly improvement. Only 1% reported mainly improvement.
- On support, UK respondents received most from family (0.57), other ME patients (0.44), and ME charities/organisation (0.55) but negative support outweighed these most notably from social services (-1.39), educational settings (-0.91), healthcare (-0.86), and people’s workplace (-0.72). Friends scored -0.12.
Scale being -2 very negative and = 2 very positive. - In the UK the only positive experiences with therapies and management strategies came from –
- Pacing
- Physical and mental activity within energy envelope (avoiding GET).
- Acceptance of illness (coping)
- Symptom treatment e.g. pain and sleep management
- Alternative therapies
CBT as a cure was placed last.
