ME/CFS: The Invisible Illness

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Summary

ME/CFS is a serious illness that the WHO lists among the diseases of the nervous system, and its core symptom is a worsening after exertion, not ordinary tiredness. According to a model estimate, around 657,000 people in Germany have it, more than half cannot work, and at least one in four is at times housebound or bedbound over the course of the illness. For decades ME/CFS was dismissed as hysteria or exertion avoidance and treated with steadily increasing exercise, which the British guideline now explicitly advises against. Because nobody took the illness seriously, hardly any research money flowed, and to this day there is no validated test, and in the EU and the US there is no approved drug. It took Long COVID, which has produced so many new patients, to get things moving: Germany is providing 500 million euros over ten years for research into post-infectious diseases, and the EU is funding the first dedicated ME/CFS project in its research programme Horizon Europe. In Italy and South Tyrol, by contrast, ME/CFS is still not even recognised as a chronic illness with exemption from the Italian healthcare co-payment, the ticket sanitario.

Why the sick go unseen

The insidious thing about ME/CFS is that you don't see the people who have it. On good days they look healthy. On bad days they are lying in a darkened room, and nobody sees them there.

That is why they are missing from exactly the places where they would be noticed: the office, the waiting room, the street. Anyone too ill to get up can't protest either. Logically enough, the protests by those affected are called lying-down protests. In May 2026, according to the news agency epd, more than a thousand people came to a lying-down protest in front of the Brandenburg Gate for people with ME/CFS and Long COVID.

I couldn't shake one question about this subject: how can an illness that hundreds of thousands of people suffer from in Germany alone be overlooked so thoroughly for decades? The answer is more uncomfortable than I had expected. ME/CFS was never invisible. For a very long time, people simply didn't look.

What ME/CFS is

Even the name is part of the problem. ME stands for myalgic encephalomyelitis, CFS for chronic fatigue syndrome, in German chronisches Erschöpfungssyndrom. “Fatigue” sounds like tiredness, and everyone is tired now and then. At that word, people stop listening properly.

Yet the classification is unambiguous. The WHO lists ME/CFS among the diseases of the nervous system: under G93.3 in ICD-10, and in ICD-11 under 8E49, the code for postviral fatigue syndrome, under which ME and CFS are grouped. In a major report in 2015, the US National Academies called it “a serious, chronic, complex, systemic disease”. Nothing in there about it being imaginary.

The central symptom has an unwieldy name: post-exertional malaise, or PEM for short. After exertion the condition gets markedly worse, often only after a delay, and the deterioration can last for days or weeks. This applies to physical exertion just as much as to mental or emotional exertion. The US public health agency CDC calls PEM the hallmark of the illness.

On top of that come unrefreshing sleep, problems with concentration and memory that many patients call “brain fog”, and circulatory problems when standing. A diagnosis under the National Academies' criteria requires a substantial loss of functioning lasting more than six months, with new-onset fatigue that is not substantially relieved by rest, plus PEM and unrefreshing sleep, as well as either problems with thinking or circulatory problems when standing. The symptoms must be moderate to severe at least half of the time.

This leads to the most important sentence about this illness: with ME/CFS, exertion can make the condition markedly worse, and for a long time. Anyone who has understood that also understands why so much has gone wrong in how it has been handled.

How severe the illness is

A few figures show how severe. According to the National Academies, at least a quarter of patients are at times housebound or bedbound over the course of the illness. According to the German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS), more than 60 per cent are unable to work.

A Danish study from 2015 compared quality of life across 20 conditions, and ME/CFS came out worst. The study has weaknesses: only 105 members of a patient organisation were surveyed. A US calculation from 2020 points in the same direction: measured in healthy years of life lost, the disease burden of ME/CFS is twice that of HIV/AIDS.

The prospects of recovery are poor too. A 2005 review of 14 studies arrived at a median of five per cent of adults who recover fully. Many improve partially, and children and adolescents have better chances. For most adults, though, the illness remains chronic.

How many people are affected

There is no count for Germany, only estimates. The ME/CFS Research Foundation, together with the data company Risklayer, arrives at around 657,000 people with ME/CFS as of the end of 2025, plus around 757,000 people with Long COVID. Before the pandemic, the German Society for ME/CFS assumed about 250,000.

In Austria, the national reference centre for postviral syndromes estimates around 73,600 people affected. In a US survey from 2021 and 2022, 1.3 per cent of adults said they had been diagnosed with ME/CFS by a doctor, and the CDC speaks of up to 3.3 million patients. In 2015 the National Academies estimated that 84 to 91 per cent of patients have no diagnosis at all. Women fall ill considerably more often than men, roughly two to four times as often depending on the survey.

A small episode shows how little attention the illness gets. The often-quoted figure of 17 to 24 million patients worldwide appears, among other places, in a widely cited review from 2020. In 2025 researchers traced the footnote and found that the source cited there is about multiple sclerosis. If you take the prevalence that the same paper itself calculates using fairly broad criteria, 0.89 per cent, you would arrive at around 70 million.

Neither figure is reliable. But the fact that hardly anyone noticed a wrong footnote for five years says a lot.

How an epidemic became hysteria

The story of how the illness was belittled begins in London in 1955. Between July and November, more than 300 staff of the Royal Free hospital group fell ill, and the main hospital was closed for three months. No pathogen was ever found. In 1956 the term “benign myalgic encephalomyelitis” appeared for the first time, in the journal The Lancet.

Fifteen years later, two psychiatrists supplied the more convenient explanation. Writing in the British Medical Journal in 1970, Colin McEvedy and A. W. Beard argued that “epidemic hysteria” was the far more likely explanation. They relied solely on medical records and did not speak to a single patient. One of their arguments: women had been affected more often.

The other side pushed back. That same year, Melvin Ramsay, a doctor at the Royal Free, and his colleagues pointed to fever in 89 per cent and paralysis of the eye muscles in 43 per cent of those affected. Objective findings like these sit poorly with mass hysteria. Even so, it was the hysteria theory that stuck. It was simpler, and it cost nothing.

The pattern repeated itself in 1984 and 1985 in Incline Village on Lake Tahoe in Nevada. By autumn 1985, two doctors there had diagnosed around 160 patients with a puzzling, debilitating exhaustion. The CDC sent two epidemiologists and found no evidence of an epidemic of glandular fever (mononucleosis), and the local paper ran a headline saying the health authorities had dismissed the “mysterious illness”. US media soon took to mocking it as “yuppie flu”.

In 1988 the CDC then gave the illness the name that sticks to it to this day: chronic fatigue syndrome. A name that sounds as if it were about being tired.

The therapy that ignored the core symptom

Hysteria was followed by a model that sounded friendlier. In this view, patients rest too much, lose fitness as a result and fear any exertion. The treatment seemed obvious: cognitive behavioural therapy (CBT) against the fear, and step-by-step increases in exercise against the lack of fitness, known as Graded Exercise Therapy, or GET.

The model received its seal of approval in 2011 with the PACE trial in The Lancet. 641 patients, around five million pounds of public money, and the result: CBT and GET moderately improve the condition. A follow-up publication reported in 2013 that 22 per cent in each of these groups had recovered after treatment.

Critics among patients and scientists didn't believe it. One patient fought for the raw data under the UK's Freedom of Information Act and won, and researchers reanalysed them. A reanalysis based on the original trial protocol painted a different picture in 2018: 7 per cent had recovered after CBT, 4 per cent after GET and 3 per cent in the control group, and after statistical correction the two therapies did not perform significantly better than the control.

On top of that, PACE selected patients using criteria under which PEM was not a requirement.

After that, the official line flipped. In July 2017 the CDC removed CBT and GET as recommendations from its website. In October 2021 the British guideline body NICE wrote into its new guideline that programmes with fixed incremental increases in exertion, such as GET, should not be offered, and CBT only as a supportive measure, not as a curative treatment. In a review in January 2025, NICE saw no reason to change any of this.

The dispute is not entirely over: in 2022 a commentary in The Lancet accused the new guideline of being “more ideology than science”. Even so, the logic is hard to miss: for years, an illness whose core symptom is a worsening after exertion was treated by prescribing exertion.

In the German-speaking world, the old thinking still lingers today, above all when it comes to rehabilitation and pensions. Germany applies the principle of “rehabilitation before pension” (Reha vor Rente). In a survey of 322 patients, 56.5 per cent said they were worse off after a stay in a clinic or rehab facility, although the survey is not representative. Even so, in January 2026 the German federal government saw no need for legislative action.

Add to that how sparse the provision of care is. According to the German Society for ME/CFS, there is one single specialised outpatient clinic for adults in the whole country, the Charité Fatigue Centrum in Berlin, and one for children and adolescents in Munich, both so stretched that they only take patients from their own region. The more than 100 post-COVID outpatient clinics mostly do not take on ME/CFS with other triggers. For multiple sclerosis, by comparison, there are 72 specialist centres and 90 further MS centres.

In Austria, the broadcaster ORF and the investigative platform Dossier analysed 124 expert assessments carried out for the pension insurance. In 83 per cent of the assessments on occupational disability, those affected were declared fit for work, and PEM was mentioned at all in only three per cent. This, too, is a selection of cases, not a representative sample.

How it can end

The case of Maeve Boothby O'Neill shows what it means when an illness is not taken seriously. She had been diagnosed with ME in 2011, and from 2019 she lay in bed 21 hours a day. In 2021 she was admitted to hospital three times. On 3 October 2021 she died at home, aged 27, of malnutrition as a result of her ME.

The coroner's Prevention of Future Deaths report stated in 2024 that in England there are no specialist beds for severe ME, extremely little medical training, particularly on severe ME, and currently no funding for research into the causes and treatment of ME/CFS. Maeve was not the first. Sophia Mirza died in 2005 aged 32, and the inquest named CFS as the cause of her kidney failure. Merryn Crofts died in 2017 aged 21, and in her case the inquest found ME to be the cause of death.

Why hardly anyone does research

Behind all this lies a vicious circle. As long as the illness is regarded as psychological, hardly any money goes into biomedical research. Without research there is no biomarker, and without a biomarker the illness continues to be regarded as psychological.

The numbers are clear. Depending on how you count, the US National Institutes of Health (NIH) spent 10 to 13 million dollars on ME/CFS in 2024, and according to an independent analysis even less in 2025. A 2020 analysis concluded that, measured against its disease burden, ME/CFS receives only about seven per cent of the funding that would be appropriate, making it the most underfunded disease in the NIH portfolio.

In Germany, according to the ME/CFS Research Foundation, 15 to 20 million euros of public money a year recently went into research on diagnostics and therapy. Set against this, by its model calculation, are economic losses of 64.4 billion euros in 2025, albeit for Long COVID and ME/CFS combined.

For a long time the EU, too, did nothing but talk. In 2020 the European Parliament called for more money for biomedical ME/CFS research by 676 votes to 4, with 8 abstentions. The Commission replied that its calls for proposals were not disease-specific and that ME/CFS was not a rare disease. The first project in the EU research programme Horizon Europe explicitly dedicated to ME/CFS is called DISCOVER-ME, is coordinated by the Medical University of Vienna and only started on 1 July 2026, with 7.6 million euros.

What research has found nonetheless

Despite the meagre funding, there are findings. The British study DecodeME examined the genomes of more than 15,000 patients, the largest genetic study of ME/CFS to date. It found eight genetic regions associated with the illness, several of which have to do with fighting off infections and with the nervous system. It found no genetic overlap with depression or anxiety disorders.

However, the results have only been published as a preprint since August 2025, meaning without peer review. Another analysis, also not yet peer-reviewed, using data from the UK Biobank, found seven genetic loci in September 2026, none of which confirms the DecodeME hits. So the genetics are far from settled.

A finding from the Netherlands is more tangible. In 2024 researchers examined muscle samples from Long COVID patients with PEM before and after an exercise test. After the exertion, the damage in the muscle and the metabolic disturbances were measurably worse than before. This concerns Long COVID, not classic ME/CFS. But it does show that after exertion at least part of what makes up PEM can be measured in the muscle.

Another lead is autoantibodies. As early as 2016, Berlin's Charité found elevated antibodies against receptors of the autonomic nervous system in just under 30 per cent of patients. In May 2026 the journal Cell reported that antibodies from Long COVID patients triggered fatigue-like behaviour and heightened sensitivity to pain in mice.

How quickly the old interpretation resurfaces was shown in 2024 by the debate over an elaborate NIH study. It examined 17 patients very thoroughly and found, among other things, abnormalities in the cerebrospinal fluid and in the immune system. But the debate centred on an altered “effort preference”, meaning the willingness to exert oneself. It was measured with a 15-minute computer game that originally comes from depression research. Critics consider this unsuitable for capturing PEM, and the authors later stressed that no conscious behaviour was meant.

When it comes to treatment, things look even worse. Not a single drug is approved for ME/CFS in the EU or the US, and the only approval anywhere in the world has existed since 2016 in Argentina, for the drug Ampligen.

Rituximab, on which many had pinned their hopes, failed in 2019 in a trial with 151 patients: 26 per cent responded on rituximab and 35 per cent on placebo, and the difference was not significant. At the international ME/CFS conference in Berlin in May 2026, according to a conference report by the specialist platform The Sick Times, all the newly presented controlled trials missed their goals, including immunoadsorption, a kind of blood washing, and low-dose naltrexone.

There is some hope from a small Norwegian pilot study of the cancer drug daratumumab, which in 2025 brought marked improvement in six out of ten female patients. Without a placebo group, however, this is little more than a hint, and a controlled trial is under way.

What COVID changed

That things are moving nonetheless is down to COVID. Many people who never recovered after a COVID infection meet the criteria for ME/CFS. In a 2022 Charité study, this applied to 19 of 42 post-COVID patients with persistent moderate to severe fatigue. In the large US study RECOVER, 4.5 per cent met the criteria after an infection, and 0.6 per cent without one. Both studies have their biases, but the direction is unambiguous.

This turned the patients into an item on the national economic balance sheet. The ME/CFS Research Foundation puts the economic losses from Long COVID and ME/CFS in Germany at 64.4 billion euros for 2025, and at more than 318 billion in total since 2020. That is a model calculation, but even if it were too high by half, an enormous sum would remain.

Politicians have responded. In 2025 the CDU/CSU and the SPD included ME/CFS in their coalition agreement, though without any figures. In November 2025, Research Minister Dorothee Bär announced the “National Decade against Post-Infectious Diseases”: 500 million euros over ten years, launched on 30 January 2026. The first funding guideline for clinical trials was published in June. According to the German Society for ME/CFS, the ministry currently has no plans to fund psychosomatic research.

There have been smaller steps too. Since January 2026, ME/CFS in Germany has had its own, more precise diagnostic codes. Since June 2026 doctors have been allowed to prescribe four drugs off-label at the expense of statutory health insurance, but only for one of them, agomelatine for fatigue, does the decision explicitly include ME/CFS following an infection. That does not make it approved for ME/CFS, and it treats symptoms, not the cause.

Things are moving in the courts as well. In November 2025 the Berlin-Brandenburg Higher Social Court (Landessozialgericht) recognised ME/CFS following a fifth disease (parvovirus B19) infection contracted at work as the consequence of an occupational disease, though the ruling is not yet final.

And yet: 500 million over ten years is 50 million a year. Measured against the modelled 64.4 billion euros of annual losses from Long COVID and ME/CFS, the Decade thus amounts to around 0.08 per cent. For every euro of losses there is less than a tenth of a cent of research.

Austria looks similar. Since November 2024 it has had an “Action Plan on Post-Acute Infection Syndromes”, which the Court of Audit criticised in January 2026 as “not very concrete”. In June 2026 a care pathway was at least adopted, under which the federal states choose between specialist units, networks or both. On funding, it refers only to general funds for expanding the outpatient clinics.

And here in Italy and South Tyrol

In Italy, the issue is still at the very beginning. There is no national exemption code, and ME/CFS is on neither the list of rare diseases nor the list of chronic diseases that are exempt from the ticket sanitario. The 2025 draft update of these lists adds fibromyalgia, among others, but not ME/CFS.

A bill intended to change this has been before the Chamber of Deputies since September 2023. Since it was assigned to the Social Affairs Committee in January 2024, nothing more has happened. Individual regions such as Veneto in 2015 and Basilicata in 2017 have recognised the illness by law, but as early as 2019 there was criticism that the reference centre planned in Veneto had not been set up. There is no official figure for the number of people affected, and the estimates of 200,000 to 500,000 that are circulating have no traceable basis.

In South Tyrol, Team K tabled a motion on ME/CFS in the provincial parliament in December 2024. It was rejected in February 2025, with 14 votes in favour and 17 against. Provincial health councillor (Landesrat) Hubert Messner made clear that an exemption from the ticket sanitario was not planned, because ME/CFS is not a rare disease.

I don't find that argument convincing. Rarity is not even a requirement for the list of chronic diseases. Diabetes is anything but rare and is nonetheless exempt. Whether a disease is rare decides whether it goes on the list of rare diseases, not on the list of chronic ones.

At least something is happening in terms of care. Since November 2024 the South Tyrolean Health Service (Sanitätsbetrieb) has had a working group on ME/CFS led by Luca Sebastianelli. The neurorehabilitation unit in Sterzing (Vipiteno) is the point of contact for complex cases, and according to ORF Südtirol a care pathway has now been defined. Since 2023 the self-help group has had a home under the umbrella of the Rheuma-Liga Südtirol. Nobody knows how many people in South Tyrol are affected, and estimates range between 1,500 and 4,500.

Made invisible

ME/CFS is not a mysterious new disease. It has been described for more than 70 years, and the WHO has listed it among the diseases of the nervous system for decades.

It was made invisible by decisions. By a name that sounds like tiredness. By a 1970 journal article whose authors had not spoken to a single patient. By a therapy that treated the core symptom as exertion avoidance. And by research budgets so small that hardly anything turned up that anyone could have pointed to.

Long COVID has made the number of patients so large that looking away no longer works. That is a bitter reason for progress, but it is one.

In a few years, two things will show whether this amounts to more than an announcement: whether there is a test that detects the illness, and whether there is a drug that treats it. Until then, many patients remain where they have always been. At home, in a darkened room, out of sight.

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