33 experts for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) from Germany, Austria and Switzerland were involved in the development of the report. From Switzerland, the ME/CFS experts Gregory Fretz, Jürg Hamacher, Martina King, Jonas Sagelsdorff and Maja Strasser were involved.
The consensus statement provides a comprehensive overview of the current state of knowledge on ME/CFS, emphasizes the clinical criteria of the Canadian Consensus Criteria (CCC) with a focus on the key symptom post-exertional malaise (PEM) as a basis for diagnosis and highlights available treatment options and future developments.
What is ME/CFS?
The chronic multisystemic disease ME/CFS can lead to significant physical and cognitive impairments, which in severe cases can result in complete dependency. ME/CFS affects the central and autonomic nervous system, the immune system, the cardiovascular system, energy production in the mitochondria, the gut microbiome and the perfusion of the muscles, brain, and other organs.
It is emphasized that this is a somatic (physical) disease. One of the main causes is an excessive reaction to a virus, as can also be observed after COVID-19 infections. In addition, the disease can cause reactivation of viruses present in the body and thus cause further damage.
Diagnostic criteria and challenges
International studies estimate that 84-90% of all ME/CFS sufferers are undiagnosed or misdiagnosed. There are large gaps in care in Switzerland, Austria, and Germany. On average, it takes around 7 years for a diagnosis to be made.
Until the correct diagnosis is reached, affected people have to consult an average of 11 different doctors and experience 2.6 misdiagnoses – some of these misdiagnoses can lead to treatments that exacerbate ME/CFS symptoms.
The consensus statement recommends the Canadian Consensus Criteria (CCC) as the gold standard for diagnosis. The leading symptom is post-exertional malaise (PEM), which is crucial for accurate differentiation. PEM describes a deterioration in health after minor exertion that can last for days or weeks.
The diagnosis requires a differentiated medical history and the exclusion of other illnesses. In particular, differentiation from mental illnesses such as depression or burnout is essential in order to avoid incorrect treatment. Patients with depression or burnout suffer from a lack of motivation, which can be treated with activating measures.
People affected by ME/CFS do not have a motivational disorder; for people suffering from PEM, activating therapy leads to deterioration.
For a ME/CFS diagnosis according to CCC, all five main criteria must be met:
- Post-exertional malaise
- Pathological fatigue with restrictions in everyday life
- Sleep disorders
- Pain
- Neurological/cognitive manifestations
and at least two secondary criteria must be met:
- Manifestations of the autonomic nervous system
- Neuroendocrine manifestations
- Immunological manifestations
The severity of an ME/CFS disease can best be determined using the Bell scale (0-100). A value of 100 points corresponds to a healthy condition and 0 points to a severely affected person (bedridden, in need of full-time care, highly sensitive to stimuli). As the course of the disease can show strong fluctuations, it is recommended that the best and worst values during the course of the disease are also queried in addition to the current Bell value.
In the future, the FUNCAP55 questionnaire could be useful for assessing functional capacity in ME/CFS.
Current and future therapy concepts
The consensus statement emphasizes two main pillars of therapy: pacing to prevent PEM and symptom-relieving measures. Pacing helps those affected to manage their energy in a targeted manner and avoid overload.
Pacing is the most important basic component of ME/CFS treatment and always takes precedence over other measures.
The therapy includes individually tailored physiotherapeutic and psychological support to prevent deterioration. The treatment of comorbidities and appropriate medication are also essential.
Intensive home care and specialized therapies are required for severely affected patients. Prevention and education, especially in the context of Long COVID, play a key role in long-term care.
The following table summarizes the recommendations of current treatment options. These treatment options should only be considered if there is no contraindication.
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Pacing first: Adequate treatment of all symptoms and comorbidities with attention to PEM |
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PEM |
Pacing, wearables, activity/symptom diaries. |
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Sleep/relaxation
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Relaxation techniques, slow-release melatonin, first-generation H1 antihistamines, e.g. diphenhydramine, low-dose antidepressants (one tenth to one quarter of the normal dose: e.g. mirtazapine, trimipramine, doxepin; no amitriptyline for tachycardia/POTS). |
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Orthostatic intolerance (OI) (POTS and OH)
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Drink at least 3 liters of fluid/day, especially electrolyte juices, increased salt intake, support stockings/abdominal bandage, medication: e.g. ivabradine/nebivolol [164], mestinon, fludrocortisone, midodrine depending on the symptom complex. Possibly volume substitution with physiological saline solution. |
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Pain
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Careful manual therapy or physiotherapy, transcutaneous nerve/vagus stimulation, medication: e.g. paracetamol/ibuprofen/metamizole, gabapentin/pregabalin, LDN depending on the pain symptoms, involvement of pain medicine. |
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Restless legs symptoms |
Trial with dopamine agonist Rotigotion as a patch (1-3 mg/24 h). |
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Mast cell overactivity/ MCAS |
H1 and H2 blockers, possibly supported by mast cell stabilizers such as ketotifen and cromoglicic acid. |
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Cognitive dysfunctions |
Depending on the findings, indirect therapy of cognitive dysfunction via symptom relief of mast cell overactivity/MCAS and/or OI as well as pacing. LDN, LDA. |
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Food supplements
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To support the mitochondrial metabolism and/or to compensate for deficiencies. Neuroendocrine hormone balance in the event of deficits. |
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"Off-label" medication for symptom complexes
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Mestinon (POTS, fatigue, PEM), [162] LDN (fatigue, cognitive dysfunction, PEM, pain), [165, 166] LDA (fatigue, cognitive dysfunction, PEM, hypersensitivity), [167] ‑NAcetylcysteine (NAC) and possibly guanfacine (fatigue, cognitive dysfunction, PEM), [168] neuromodulatory drugs, drugs for circulatory disorders. |
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If required, support from specifically trained dieticians, occupational therapists, clinical psychologists, psychotherapists, physiotherapists and qualified nurses. Psychological support. |
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In the case of severely affected patients, "high-intensity home care" is required. In this case, it is important that patients and family caregivers are provided with appropriately trained healthcare staff (e.g. for jejunal tube care and nutrition) and aids (from anti-decubitus mattresses to electric wheelchairs with a reclining function as well as future telemonitoring options). |
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Adapted and translated from Infoblox 1 of the Consensus statement.
Social and medical implications
Access to appropriate medical care and social support remains a challenge. The fact that many patients only receive the correct diagnosis years later can exacerbate their situation. A central demand of the statement is to improve the recognition of ME/CFS (also by experts, IV and health insurance companies) and to establish specialized facilities and training programs for medical staff.
