Guidelines, Care & Resources (Germany/EU)

12. Guidelines, care & resources (Germany/EU)

Guidelines

The central medical orientation in Germany is the AWMF guideline "Long/Post-COVID" (register number 020-027) under the lead of the German Society for Pneumology and Respiratory Medicine (DGP). Important for context: it currently exists as an S1 guideline (last extended in August 2025) – this is the lowest AWMF level, which is based on expert consensus and does not yet contain a systematic evidence assessment like an S3 guideline [1]. A higher-grade guideline is so far lacking and is being called for by experts and affected people. In terms of content, the guideline is nonetheless significant: it names fatigue, chronic fatigue syndrome (ME/CFS) and post-exertional malaise (PEM) as possible consequences, explicitly recommends pacing/energy management (among other things the "4P principle": pacing, planning, prioritising, positioning) and, where PEM is present, advises against rigid, escalating activation in the sense of a "graded exercise therapy" (GET) [1].

Internationally trend-setting is the British NICE guideline NG206 (2021). For ME/CFS it clearly recommends no GET as a cure and no generalised training programmes with fixed increases; instead, individual energy management/pacing and respecting the exertion limits are in the foreground ("do not push through the symptoms") [2]. PEM is regarded as a core feature; cognitive behavioural therapy is classified as only supportive, not curative [2].

Care situation in Germany

Care is regarded as strongly underdeveloped (a "care desert"). By estimates, several hundred thousand people in Germany live with ME/CFS – the number has roughly doubled since the pandemic [3]. For adults, there is essentially only one specialised university outpatient clinic nationwide, the Charité Fatigue Centrum (CFC) in Berlin [3][4]; for children and adolescents the MRI Chronic Fatigue Centrum (MCFC) of TU Munich (Klinikum rechts der Isar/München Klinik) [5]. Although there are over 100 post-COVID clinics, in many places ME/CFS expertise, funding and staff are lacking; people with ME/CFS after other infections often fall through the net [3]. The consequences are long waiting times, mistreatment and considerable undersupply.

Self-help and patient organisations

Reputable points of contact include the Deutsche Gesellschaft für ME/CFS e.V. (mecfs.de), which has published a practical guide and political demands (among them a national action plan) [3]; Fatigatio e.V., the nationwide self-help association with regional groups and social counselling [6]; and the patient initiative Long COVID Deutschland with directories of clinics and rehabilitation [7]. Specifically for POTS and related dysautonomias, PoTSDys e.V. ("PoTS und andere Dysautonomien e.V.", based in Bochum) is active with education, exchange and advocacy [13]. Internationally, for example #MEAction is active with pacing and management guides [8]. These organisations offer orientation and exchange but do not replace medical advice.

Social-law aspects

Because Long-/post-COVID and ME/CFS have no assessment criteria of their own in the German Care-Medicine Ordinance, the grading of the degree of disability (GdB) is done by analogy to comparable diseases; depending on severity, values from 10 to 100 are possible, and from GdB 50 one counts as severely disabled [9]. Recognition is often difficult in practice and is frequently only achieved through objection or legal action – but social courts have already granted a GdB of 50 for post-COVID syndrome [10]. In case of lasting incapacity to work, sickness benefit, a (partial or full) reduced-earning-capacity pension from the German pension insurance and participation benefits come into consideration [11].

Rehabilitation and severe illness

Rehabilitation can help but carries risks in PEM: activating, training-based rehab concepts can worsen the condition (push-crash). A German survey study concluded that the idea of rehabilitation in this disease must be "completely rethought" and should be PEM-appropriate and pacing-oriented [12]. In severe illness, care benefits, aids and social support are also important; early advice (care insurance fund, social services, self-help) is worthwhile here.

Important note

mypacing is not a medical device and does not replace diagnosis or therapy. Individual medical, social-law and rehabilitation questions belong in medical or expert hands. There is so far no approved cure – caution is called for with expensive "miracle cures" and promises of quick recovery. Gaps in care and open research questions persist; this text reflects the state of 2025/2026 and may change with new guidelines.