An recent article by the Austrian Press Agency (tranl. by deepl.com):
Warning of dramatic consequences of misdiagnosis in post Covid and ME/CFS
Post-acute infection syndromes are often not recognized as such. Such misdiagnoses can have dramatic consequences, warns a scientist. There is a high risk of confusion with mental illnesses.
The coronavirus pandemic has led to a significant increase in post-viral secondary illnesses since 2020. Experts such as Kathryn Hoffmann from MedUni Vienna are now warning against incorrectly classifying these clinical pictures, such as Long or Post Covid but also ME/CFS, as mental illnesses. Such misdiagnoses would prevent adequate treatment, and incorrect treatment could cause severe damage in some cases. Social and financial problems are also the result.
In an interview with APA, Hoffmann, who heads the Department of Primary Care Medicine at MedUni Vienna's Center for Public Health, said that most doctors "still don't really have the right diagnosis for such post-acute infection syndromes (PAIS) on their radar". The crux of the matter is that individual symptoms of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), as well as long or post Covid, can at first glance resemble those of mental illnesses. However, Hoffmann and psychiatrist Florian Buchmayer (Vienna), head of the Department of Psychiatry and Psychotherapy at the Hospital of the Brothers of Mercy in Eisenstadt, emphasized in the APA interview that the symptoms can be easily distinguished from each other by means of adequate diagnostics. The German psychologist Bettina Grande and the Linz psychologist Markus Gole also pointed out to the APA the need for an accurate medical history in order to avoid misdiagnosis.
Risk of confusion with mental illnesses
Buchmayer said that there is some overlap or risk of confusion between PAIS symptoms and mental illnesses such as depression. In particular, PEM (post-exertional malaise), which according to Hoffmann is the "cardinal syndrome" in ME/CFS, is often confused with depression - although the latest studies show that PEM is a physical stress-recovery disorder at the immune and cell metabolism level. Buchmayer also emphasized that somatization disorders, which are often wrongly diagnosed, are "quite easy to differentiate".
Other symptoms that occur in the context of long/post Covid and ME/CFS are also not typical of mental illnesses. Buchmayer mentioned, for example, circulatory and heart problems, lung problems, flu-like symptoms or sudden, unexplained hypersensitivity to medication or food. This also applies to problems with digestion or the urinary bladder, as well as burning skin or muscle weakness - all symptoms that can occur in post-acute infection syndromes.
Psychologist calls for a broad information campaign about syndromes such as ME/CFS
Hoffmann and other experts (including immunologist Eva Untersmayr-Elsenhuber from MedUni Vienna and neurologist Michael Stingl) have written an additional chapter to the Long Covid "web tool", which has been available since 2022, in order to make it easier for general practitioners, who are usually the first point of contact for such symptoms, to diagnose ME/CFS.
It would also be important to create a general awareness of the existence of syndromes such as ME/CFS in society as a whole, emphasized psychologist Grande - but also in the medical profession. After all, the best diagnostic tools are useless if they are not even considered. "We need a broad information campaign like the one on AIDS in the 1980s," said the psychologist, who has been treating patients with ME/CFS in her practice for years. For a long time, AIDS was also talked down as a minority problem, she recalls.
Gole and Buchmayer also referred to the history of other diseases such as multiple sclerosis, which for a long time were often misinterpreted as mental illnesses. Stomach ulcers were also blamed on excessive stress and poor diet for a long time, until it was proven in the 1980s that the bacterium Helicobacter pylori causes most stomach ulcers and stomach cancers, said psychologist Grande. Kevin Thonhofer, Chairman of the Austrian Society for ME/CFS, also emphasized the problem of correct diagnosis in the APA interview: it often takes five to eight years to get the right diagnosis, said the former professional footballer and self-sufferer.
Dramatic consequences of misdiagnosis
If psychological misdiagnoses are made, patients not only do not receive suitable therapies, but "sometimes also incorrect therapies that worsen their condition", said Hoffmann, who drew attention to the topic of ME/CFS and post-Covid with an international webinar at the beginning of March (together with the WE&ME Foundation, the Austrian Society for ME/CFS and Stingl).
Misdiagnoses have particularly dramatic consequences for those affected in the presence of the severe exertion-recovery disorder PEM, which can occur as a result of an infection (such as Covid) and is a "MUST symptom" in ME/CFS according to clinical consensus criteria, says Hoffmann. PEM leads to a significant deterioration in the overall condition after activity or exertion (often only very mild) - sometimes immediately, sometimes with a time delay, according to the experts. Post-exertional malaise means "much more than just exhaustion or fatigue, and must always be considered in addition," emphasized Hoffmann. Sensory stimuli, emotional stress or infections can also be (additional) triggers for such a deterioration.
However, PEM has nothing to do with depression and lack of drive, as is often wrongly assumed and diagnosed, according to the experts. Those affected have a normal drive (in contrast to depression, for example) and tend to be particularly motivated to participate in activating rehabilitation measures (which are indicated and helpful for depression, for example). "However, if PEM sufferers are prescribed gradual activation, this can, in the worst case, lead to a permanent deterioration in their condition - up to and including bedriddenness for weeks, months or permanently," says Hoffmann. Unfortunately, this is still "the case with many rehabilitation stays or casual recommendations from doctors".
MCAS symptoms are often confused with anxiety disorders and panic attacks
But even with milder forms of post-acute infection syndromes, the misdiagnosis of a supposed psychological cause can have fatal consequences. As an example, Hoffmann cited mast cell activation syndrome (MCAS), which can occur as part of such syndromes. Symptoms include heart palpitations, headaches, fatigue and concentration problems. "These symptoms in particular are often confused with anxiety disorders and panic attacks - but should actually be treated with antihistamines and mast cell stabilizers, not with psychotherapy and antidepressants," says the expert.
Dysfunction of the autonomic nervous system can also often occur as part of ME/CFS or post-Covid, which leads to circulatory problems, especially when standing (known as POTS or orthostatic hypotension). This results in symptoms such as rapid heartbeat, palpitations, but also nausea, dizziness, breathing problems or concentration problems. "This is also very, very often misinterpreted as a stress reaction or panic," says Hoffmann. The right approach would be to drink plenty of fluids, eat a diet high in salt and wear compression stockings. Conducting therapy for a supposed anxiety disorder, on the other hand, would not help. Grande added that psychotherapy for anxiety disorders is even harmful, as it generally contains activating elements.
"Therefore, at least PEM, MCAS and autonomic dysfunction should always be diagnosed," says the expert. If autonomic dysfunction is suspected, for example, this can be done using a comparatively simple Schellong test, in which the heart rate and blood pressure are measured while lying down and standing up. "I see patients who have been suffering for months, who have already taken several antidepressants," said Hoffmann - but have not undergone this type of diagnostic test.
Like psychiatrist Buchmayer, Hoffmann pointed out that there are "very clear diagnostic criteria" for mental illnesses. Just because the standard diagnostics of blood values, for example, are in order, does not automatically mean that there is a mental or psychiatric diagnosis, she said. Buchmayer also emphasized the need for precise diagnostics: "If I don't work very precisely, they all get a diagnosis of depression." It is important to take a close look at the medical history. For example, training is generally good if POTS is present alone. However, if stress intolerance (PEM) is also present, overactivation should be avoided as far as possible, as this leads to deterioration, according to Hoffmann. Gole emphasized that in addition to a lack of knowledge, the cost factor also leads to misdiagnosis: This is because statutory health insurance physicians simply do not have enough time to devote to a detailed medical history.
The benefits of rehab depend on many factors
Many people who are only mildly affected only have the energy for an hour's walk or just to manage the household - if at all. According to Hoffmann, when prescribing rehabilitation measures, you also have to consider the journey to and from therapy sessions and dining rooms, conversations and noises, all of which can cause deterioration. Only if all of this can be tolerated can rehab be beneficial. If this is not possible, then the only option for PEM is to carry out activity only to the extent that does not lead to a worsening of the condition, i.e. to remain below the pathologically reduced stress limit (so-called "pacing"). Patient representative Thonhofer emphasized that traditional rehabilitation is contraindicated if PEM is present.
Gole also pointed out the problem of incorrect diagnoses by experts. This concerns applications to the Pension Insurance Institution (PVA) for disability pension or reduced earning capacity or for care allowance classifications, but also problems with the receipt of AMS funds, as there is a risk of being blocked if those affected are unable to attend courses due to their condition. In many cases, existing findings drawn up by specialists are negated and a mental health diagnosis is made by the experts, with all the consequences that this entails - such as being asked to undergo activating rehabilitation, which is harmful for PEM sufferers.
Such problems also exist in Germany, according to Grande, who also referred to the financial dimension for insurance companies: "Of course, it is also cheaper to repeatedly give patients a mental diagnosis and explain to them that they just need to make a little more effort instead of recognizing ME/CFS as a reason for reduced earning capacity or paying them a pension". Those affected would also be financially burdened: In addition to the limited or complete lack of ability to work, they would also incur costs due to consultations with specialized private doctors and therapies.
Training system required
According to Gole, the training system in particular also needs to address the problem of experts: "ME/CFS is not a topic in either medical or psychological training." The call for interdisciplinary contact points for patients also remains loud: There are still no centers, complained patient representative Thonhofer, for example. With regard to the national reference center for post-infectious diseases announced by Health Minister Johannes Rauch (Greens), it depends on how it will be staffed and to what extent ME/CFS and PEM will be a topic there, he said.
According to the experts, the fact that to date there has not been a single clearly identifiable biomarker for ME/CFS or post-Covid, which often leads to the misinterpretation of a psychological cause, is due to the fact that post-acute infection syndromes are complex processes. It is becoming increasingly clear that this is probably related to the immune response, that the blood vessels are also affected and that the deposition of amyloid (protein) also plays a role. According to current research, the mitochondria (power plants of the cells) are also affected by these problems, Hoffmann said. She pointed out that there is no "one" biomarker for cancer either. "In the same way, there will also be different biomarkers for ME/CFS." As an example, the expert referred to a study by MedUni Vienna, according to which people with immunodeficiency and ME/CFS have different markers than people without immunodeficiency, as well as to a current preprint study from 2024, which shows that different immune markers could also be important in women and men.
(APA/tas)
