ME/CFS: Seriously Ill and Not Taken Seriously — Dealing with a “Black Box”
Laura Chrobok 02.09.2026
A visit to the doctor, meeting friends or entering brightly lit rooms — for people severely affected by ME/CFS, even seemingly ordinary situations can be enough to significantly worsen their condition for days or weeks. What may seem like exhaustion to others is a complex illness whose mechanisms are poorly understood. Nevertheless, ME/CFS is frequently underestimated and explained in psychological or psychosomatic terms.
The condition is now recognised as a serious systemic illness. At the same time, its precise causes remain unclear and there is still no curative treatment — but, finally, there is some promising research.
ME/CFS: First Alarmingly Disregarded, Later Gradually Admitted to Be Poorly Understood
ME/CFS is not a new illness. An outbreak at London’s Royal Free Hospital in 1955 became particularly well known. The term “ME”, meaning “myalgic encephalomyelitis”, also dates from this period. “Myalgic” refers to muscle pain, while “encephalomyelitis” literally refers to inflammation of the brain and spinal cord. (However, widespread inflammation of the central nervous system has still not been demonstrated as a consistent feature of the illness.)
“CFS” stands for “chronic fatigue syndrome”. This term was coined in the USA because fatigue is one of the signs of the illness (Holmes et al., 1988).
A combination of these two terms appears to be the best choice as an umbrella term for the symptoms because — even if it is not entirely accurate — it is at least not entirely wrong. This is why it has become established.
Looking back, the psychiatrists Colin McEvedy and Alan Beard interpreted the outbreak at the Royal Free Hospital as “epidemic hysteria” (McEvedy & Beard, 1970).
Unfortunately, this is an example of how illnesses were sometimes incorrectly explained in psychological or psychosomatic terms for decades when clear laboratory findings were lacking and no obvious disease mechanism could be identified.
The condition is now classified differently: ME/CFS is regarded as a complex, multifactorial systemic illness. It involves an interplay of immunological, neurological, autonomic, vascular and metabolic changes (German Society for ME/CFS, 2026; Habermann-Horstmeier & Horstmeier, 2026).
It is difficult to determine how many people are affected because different diagnostic criteria are used. For Germany, the Institute for Quality and Efficiency in Health Care (IQWiG) estimated the number of people affected by ME/CFS at around 140,000 to 310,000 (IQWiG, 2023). Women are affected approximately 1.5 to 2 times more often than men (Lim et al., 2020).
Research into the Causes
The causes of ME/CFS have still not been conclusively established. In most cases, the illness begins after a viral infection. One question of particular interest to researchers is whether such infections can trigger misdirected immune responses.
In autoimmune deseases, the immune system attacks the body’s own structures. Normally, the immune system distinguishes between “foreign” and “self”; in autoimmune diseases, this tolerance does not function reliably. As a result, the body’s own cells, tissues or certain receptors may be attacked or their function affected. In ME/CFS, functional autoantibodies are among the factors being discussed, which could, for example, affect signalling pathways in the autonomic nervous system. However, a consistent autoimmune mechanism for ME/CFS has not yet been proven.
A study published in 2024 by the US National Institutes of Health conducted an exceptionally extensive analysis of 17 people with post-infectious ME/CFS and 21 healthy controls.
Among other things, the researchers found differences in:
· immunological
· autonomic
· neurological
· and metabolic parameters.
In some cases, different biological patterns were also observed in men and women (Walitt et al., 2024).
The study was small and could not establish universally applicable causes of the illness. However, it demonstrated just how diverse the biological processes associated with ME/CFS are.
The Cardinal Symptom, Typical Symptoms and the Crash
A cardinal symptom is a pattern of symptoms that is particularly characteristic of an illness and plays a central role in its diagnosis and differentiation from other conditions. Post-exertional malaise, known as PEM, is considered the cardinal symptom of ME/CFS (German Society for ME/CFS, 2026; Centers for Disease Control and Prevention, 2024).
Following physical, mental or emotional exertion, PEM often causes a delayed and disproportionately severe deterioration in health that can last for hours, days or weeks. For people who are severely ill, for example, recording a voice message can result in being confined to bed for days.
Other typical symptoms include:
· Sensitivity To Stimuli: Touch, light, noise, smells or certain tastes can be virtually intolerable, particularly for people who are severely ill.
· Cognitive Impairment: Concentration, memory, word-finding and information processing can be impaired. The term brain fog is commonly used to describe this.
· Unrefreshing Or Disturbed Sleep: This may include interrupted sleep, an altered sleep pattern or a greatly increased need for sleep.
· Orthostatic Intolerance: Sitting upright or standing can worsen symptoms. Dizziness, a racing heart, weakness, light-headedness, nausea or difficulty concentrating may occur.
· Reduced Cerebral Blood Flow When Upright: In ME/CFS, blood flow to the brain can decrease considerably under orthostatic stress — even in people whose blood pressure and heart rate remain unremarkable.
· Pain: Muscle, joint, head or eye pain, as well as increased sensitivity to pain when touched, can form part of the symptom profile.
· Temperature Sensitivity: People affected may be particularly sensitive to heat or cold.
· Flu-Like Symptoms: Sore throat, tender lymph nodes, nausea, chills or muscle pain may also occur.
· Gastrointestinal and Nutritional Problems: Particularly in severe cases, symptoms such as nausea, constipation and bloating may occur. People who are very severely ill may also have difficulty swallowing and obtaining sufficient food and fluids.
(NICE, 2021; van Campen et al., 2020)
When their condition deteriorates markedly, people affected often refer to this as a “crash”. During a crash, several different symptoms can worsen considerably at the same time.
This fundamentally distinguishes ME/CFS from ordinary exhaustion: while healthy people are advised to steadily increase their exercise load in order to improve their capacity and endurance, exceeding an individual’s exertion threshold in ME/CFS can trigger a massive deterioration (NICE, 2021).
Widespread Gaps in Doctors’ Knowledge Make Diagnosis Even More Difficult
The initial assessment of suspected ME/CFS should generally be carried out by a GP, with other specialists or specialised facilities involved where necessary (Federal Joint Committee, 2024).
The problem is that many doctors still do not have sufficient knowledge of ME/CFS.
A German study involving 674 people with a confirmed diagnosis revealed considerable shortcomings in medical care: almost three-quarters of respondents had already consulted six to 15 doctors from different medical specialties (Habermann-Horstmeier & Horstmeier, 2024).
The current German clinical practice guide puts the average or typical time to diagnosis at six to seven years and also points to the high number of undiagnosed cases due to insufficient knowledge of the illness and its diagnostic criteria (German Society for ME/CFS, 2026).
Different Levels of Severity … From Mild to Very Severe
An ME/CFS diagnosis alone says little about how severely someone is actually affected or will be affected in the future.
ME/CFS is often broadly divided into mild, moderate, severe and very severe forms:
· With mild ME/CFS, some people may, for example, still be able to work — although often only by considerably restricting leisure and social activities.
· With moderate ME/CFS, mobility is significantly reduced and everyday life has to be adapted more extensively to the person’s limited capacity for exertion.
· With severe ME/CFS, people are often largely or completely housebound and require support with everyday activities.
· With very severe ME/CFS, a person may be almost permanently bedbound and require help with basic tasks such as washing, dressing and eating. Even light, noise and touch may then be barely tolerable, while swallowing or speaking can also be severely impaired — a life in almost complete silence and darkness.
(NICE, 2021)
Pacing and Energy Management
For many years, so-called Graded Exercise Therapy (GET) played an important role in ME/CFS.
The aim was to gradually increase physical activity according to a predetermined plan. This was based partly on the idea that physical deconditioning and avoidance of activity contributed to perpetuating the illness. However, particularly in view of PEM, this concept is problematic.
In 2021, the British health authority NICE fundamentally changed its recommendations. Programmes involving fixed incremental increases in physical activity should not be offered to people with ME/CFS. Exercise programmes based on the assumption that deconditioning or avoidance of activity perpetuates ME/CFS are likewise not recommended (NICE, 2021).
The crucial point is this: exercises must be adapted to the individual’s capacity — not the individual’s capacity to a predetermined exercise plan.
This is exactly where pacing comes into play. Put simply, it means managing physical, mental, and emotional exertion in such a way that individual limits are exceeded as little as possible.
This may include:
o taking physical and mental exertion equally into account
o learning to recognise and understand personal warning signs of overexertion
o breaking larger tasks down into smaller steps
o planning breaks before severe exhaustion occurs
o not automatically catching up on all outstanding activities on a good day.
NICE recommends individualised energy management within the person’s current limits of exertion (NICE, 2021).
Pacing is a good strategy for managing the illness.
Mobility Aids Are Available, but the Need for Long-Term Care Is Often Not Adequately Recognised
With moderate to very severe ME/CFS, aids such as walking frames, wheelchairs, care beds or positioning aids can also make everyday life easier. In cases of pronounced orthostatic intolerance, where sitting upright for extended periods is difficult, a wheelchair with an adjustable backrest or reclining function may also be useful. Using a wheelchair does not automatically mean that the person affected is completely unable to walk — it can help reduce exertion and conserve limited energy for necessary activities.
In practice, however, people with ME/CFS repeatedly report difficulties with assessments and applications. One reason is that during a short appointment, some may still be able to sit, speak or take a few steps, while the deterioration triggered by doing so does not occur until hours later.
The fact that people affected can encounter difficulties in accessing support has now also become a political issue. In October 2025, the Health Committee of the German Bundestag addressed post-viral illnesses such as ME/CFS. Experts reported, among other things, long journeys to diagnosis, a lack of specialised services and rejected benefit claims. In some cases, access to aids and recognition of the need for long-term care, necessary assistance or severe disability were only achieved following an appeal or legal action (German Bundestag, 2025).
For some people affected, this can create an additional burden: not only do they have to live with the consequences of their illness, but in some cases they also have to fight for the support that makes participation in society possible in the first place.
Aids, care and recognition under social law are therefore not peripheral issues in severe ME/CFS. They can play a decisive role in determining how much independence outside one’s own bed or home remains possible.
Medical Treatment and Off-Label Use
There is currently no causal treatment capable of curing ME/CFS.
Treatment therefore focuses primarily on individual symptoms and comorbidities for example, pain, sleep disorders or certain forms of orthostatic intolerance.
In some cases, medicines are used off-label. This means that an authorised medicine is used outside the indication for which it has officially been approved.
This may be medically justified in an individual case. However, it does not mean that the medicine in question has been proven to be an effective treatment for ME/CFS as a whole. NICE also emphasises that medicines for individual symptoms must be used on an individual basis and that people with ME/CFS may sometimes be more sensitive to medicines (NICE, 2021).
New Developments in Immunological Research
One current area of research is investigating whether changes in the immune system and possibly functional autoantibodies could play a role in at least some people with ME/CFS.
In 2025, Norwegian researchers led by Øystein Fluge published a small pilot study of “daratumumab”.
Daratumumab is a monoclonal antibody and is used, among other things, to treat certain blood cancers. It targets cells including antibody-producing plasma cells.
Only 10 women with moderate to severe ME/CFS participated in the open-label pilot study. According to the researchers, 6 patients showed a marked clinical improvement, while 4 showed no substantial change (Fluge et al., 2025).
This is scientifically interesting, but — for now — nothing more. The study was very small, open-label and had no placebo control group. Daratumumab therefore remains an interesting avenue for further research — but is not an established treatment.
Conclusion: With ME/CFS, Illness Meets Ignorance
ME/CFS demonstrates not only how complex a severe chronic illness can be, but also what happens when medicine and society lag behind it for decades. In many places, there is still a lack of knowledge, specialised services and confidence in dealing with the diagnosis. As a result, people affected not only have to live with PEM, pain, cognitive impairment or orthostatic intolerance, but often also have to fight simply to be taken seriously. All too often, they are summarily accused of exaggerating their supposedly depressive condition.
There is also a societal problem: someone who can speak, sit or take a few steps on a good day may appear less ill to outsiders than they actually are. The delayed deterioration following exertion remains invisible. This can be a disadvantage in assessments, applications for aids, evaluations of care needs or participation in society.
An illness is not less real simply because it is difficult to measure and barely visible to outsiders. ME/CFS therefore needs greater medical knowledge, better care structures and a society that recognises severe limitations even when they are not immediately apparent.
FAQ — Frequently Asked Questions About ME/CFS
1. Can children and adolescents also develop ME/CFS?
Yes, ME/CFS can occur at any age and also affects children and adolescents. In addition to the health problems, prolonged absences from school or vocational training can cause considerable difficulties for them.
2. Is ME/CFS hereditary?
There is no known straightforward inheritance pattern as with a classic hereditary disease. However, studies suggest that genetic factors could influence susceptibility. Genetic predispositions probably interact with other factors.
3. Can ME/CFS subside again?
The course of the illness varies greatly. Some people experience significant improvements or longer, more stable periods, while others remain severely limited for many years. Complete and lasting recovery is possible, but at present it can neither be reliably predicted nor guaranteed by any particular treatment.
Further information — also on many other topics — can be found on our blog. You can find our “Medizinskandale” book series and the “Codex Humanus”, the fifth volume of which was recently published, in our online shop. We look forward to your visit.
Sources:
· Holmes, G. P. et al. (1988): “Chronic Fatigue Syndrome: A Working Case Definition,” Annals of Internal Medicine.
· McEvedy, C. P.; Beard, A. W. (1970): “Royal Free Epidemic of 1955: A Reconsideration,” British Medical Journal.
· Deutsche Gesellschaft für ME/CFS (2026): “Praxisleitfaden Myalgische Enzephalomyelitis / Chronisches Fatigue Syndrom (ME/CFS),” Deutsche Gesellschaft für ME/CFS.
· Habermann-Horstmeier, L.; Horstmeier, L. M. (2026): “Symptom Clusters in ME/CFS Reflect Distinct Neuroimmune and Autonomic Pathophysiological Mechanisms: A Translational Model,” Journal of Translational Medicine.
· IQWiG (2023): “Aktueller wissenschaftlicher Erkenntnisstand zu Myalgischer Enzephalomyelitis / Chronic Fatigue Syndrom (ME/CFS),” Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen.
· Lim, E.-J. et al. (2020): “Systematic Review and Meta-analysis of the Prevalence of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME),” Journal of Translational Medicine.
· Walitt, B. et al. (2024): “Deep Phenotyping of Post-infectious Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” Nature Communications.
· Centers for Disease Control and Prevention (2024): “Clinical Overview of ME/CFS,” CDC.
· National Institute for Health and Care Excellence (2021): “Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management,” NICE Guideline NG206.
· van Campen, C. M. C. et al. (2020): “Cerebral Blood Flow Is Reduced in ME/CFS During Head-up Tilt Testing Even in the Absence of Hypotension or Tachycardia: A Quantitative, Controlled Study Using Doppler Echography,” Clinical Neurophysiology Practice.
· Federal Joint Committee (2024): “Richtlinie über eine berufsgruppenübergreifende, koordinierte und strukturierte Versorgung für Versicherte mit Verdacht auf Long-COVID und Erkrankungen, die eine ähnliche Ursache oder Krankheitsausprägung aufweisen (LongCOV-RL).”
· Habermann-Horstmeier, L.; Horstmeier, L. M. (2024): “Welche medizinischen Fachdisziplinen werden von ME/CFS-Erkrankten aufgesucht? Eine Public-Health-Studie zur Notwendigkeit einer besseren ärztlichen Aus- und Fortbildung,” Das Gesundheitswesen.
· German Society for ME/CFS (2024): “Diagnose, Behandlung und Hinweise zur Betreuung”, information sheet.
· German Bundestag (2025): “Experten fordern Forschung und Aufklärung zu ME/CFS,“ Parlamentsnachrichten des Deutschen Bundestages, Gesundheit – Ausschuss, hib 512/2025.
· Fluge, Ø. et al. (2025): “Plasma Cell Targeting with the Anti-CD38 Antibody Daratumumab in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – A Clinical Pilot Study“, Frontiers in Medicine.
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