Journal of IiMER June 2024 Activity-based therapies do more harm than good With PEM being a characteristic symptom of ME/CFS, meaning that symptoms worsen upon even the slightest physical or mental exertion, therapies focused on increasing activity levels (Graded Exercise Therapy - GET) or changing illness beliefs (Cognitive Behavioural Therapy - CBT) were pe rceived as harmful by most patients. CBT is a highly controversial as a treatment for ME/CFS. In the survey we distinguished between CBT as a cure and CBT as coping. 3 out of 4 patients experienced a (very) negative effect of CBT as a cure, while 1 in 4 had a negative experience of CBT for coping. Only 5% reported that CBT as a cure to have had a positive effect, compared to 38% in the case of CBT for coping. The more severe the illness, the more negative experiences with CBT, both as cure and as coping. In short, CBT and GET are not only unsuccessful in improving the condition of ME/CFS patients but have a very negative impact on the course of illness. Both the CDC in the US and NICE in the UK have removed advice on CBT and GET from their guidelines for ME/CFS. The Biopsychosocial Model (BPS) – a failed and harmful approach to ME/CFS The dire situation for most ME/CFS patients across Europe is, in part, the result of both ignorance and lack of knowledge among health professionals, social workers, and policy makers. Moreover, the biopsychosocial (BPS) model claims ME/CFS to be psychological and linked to dysfunctional illness beliefs, a pathological focus on symptoms, fear of activity and resulting deconditioning. According to this model, the cure is teaching the patient to ignore, or not to focus on symptoms, and “push through” and follow an exercise program with set increments. This approach has not only failed to get support from interventional studies, or from research that finds critical biological anomalies in people with ME/CFS. It also lacks support from patients and has done harm in its promotion of CBT and GET. The model places the responsibility for both having ME/CFS and for recovery squarely on the patient. This may result in a lack of empathy and sympathy from others, both in healthcare and welfare institutions and within the patient’s family. 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. The full report is available in full from this link - europeanmealliance.org/documents/emeaeusurvey/EMEAMEsurveyreport2024.pdf The European ME Alliance has received ‘official Non-State Actor accreditation’ status from WHO’s Regional Office for Europe. This allows EMEA to participate in WHO Europe Regional Meetings and to make official statements on agenda topics of interest – allowing EMEA to increase awareness, recognition, and action on ME by WHO Europe’s 53 member countries. Invest in ME Research Page 16 of 32
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