After the COVID-19 pandemic subsided, long-term issues suspected to be caused by COVID infection have increasingly come to the forefront. These conditions, collectively known as post-COVID syndromes, cover a wide spectrum. One of them is the long-known medical condition called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), for which a new official domestic guideline was recently published — a consensus report that still contains recommendations which are no longer, or explicitly not at all, advised by international literature for treating the condition.
Chronic Fatigue Syndrome is estimated to affect between 17–24 million people worldwide. It affects multiple organ systems, is chronic, and has no cure — only symptom relief is possible through various therapies. Its exact causes are still unclear, though literature generally links it to viral infections (such as the Epstein-Barr virus or SARS-CoV-2), altered immune functions, changes in stress hormones, and genetic factors. It occurs more often in women and typically appears between the ages of 40–60, though children and young people can also be affected. In rare cases, it can even become life-threatening; The Guardian has previously reported deaths linked to the condition.
ME/CFS is best described as chronic fatigue that worsens with activity and does not improve with rest, persisting for at least six months. It is also associated with post-exertional malaise (PEM), sleep and cognitive disturbances (such as difficulty concentrating or memory problems), and orthostatic intolerance, which can cause dizziness, nausea, or vision issues upon standing.
Chronic Fatigue Syndrome is difficult to diagnose and even harder to treat, and therapeutic recommendations have changed significantly over the past decade. For example, in 2021, the UK’s National Institute for Health and Care Excellence (NICE) rewrote its previous guidelines and updated its recommendations for doctors.
In the April issue of Orvosi Hetilap (Medical Weekly), a domestic guideline was published, which, according to Ágnes Szarvas (editor of mecfs.hu), was compiled by a few departments of the Hungarian Medical Professional College. However, compared to the NICE guidelines, two significant issues remain in the Hungarian text: it still recommends cognitive behavioral therapy (CBT) and graded exercise therapy (GET) for treatment — even though current scientific evidence suggests neither is effective, and exercise therapy may even be harmful for some patients.
Between the two, CBT is considered the less harmful. NICE’s new guideline emphasized that while CBT was previously used for treating ME/CFS, it should now only be offered to help patients manage symptoms and the mental burden of living with a chronic illness. This is because none of the studies reviewed by NICE provided strong evidence that CBT is effective for treating the illness. In contrast, the Hungarian guideline states: “Primarily cognitive behavioral therapy should be applied in treatment, and medications should only be introduced in very justified cases.”
In the past, ME/CFS was believed to be a psychosomatic illness, and thus CBT seemed a logical treatment. The basic assumption was that patients could "think their way out" of the illness. However, it is now known that ME/CFS is not psychosomatic, which is one reason NICE issued a new guideline.
A more serious issue may be graded exercise therapy (GET), which can be harmful if applied to the wrong patients. NICE states that no therapy based on physical activity or exercise should be recommended, as it can lead to PEM, and should only be offered to those who specifically request it. However, the Hungarian guideline states that “To treat musculoskeletal symptoms, the 2021 NICE guideline — similar to previous ones — considered deconditioning and reduced physical fitness as possible causes of fatigue. To address this, it recommended assessing physical fitness and gradually improving it with cautious steps and setting small, realistic goals.”
In contrast, NICE’s guideline actually says: “A personalized physical activity or exercise program should only be considered for people with ME/CFS who feel ready to engage in activity beyond daily routines or want to incorporate movement into their care.”
For all therapeutic solutions, NICE rated all clinical trials as providing weak or very weak quality medical evidence, without exception.
The domestic guideline was initiated by Ágnes Szarvas, who is also affected by the illness. She said that in Hungary, there is no doctor who is truly an expert in this disease. “NICE did the work, evaluated the evidence — there was an opportunity to simply adapt their guidelines to local circumstances. They said they’d create a domestic guideline and promised to involve me as a patient representative,” she told Telex.
During the process, she was in contact with the Ministry of Interior, which coordinated the work of the Medical Professional College. Initially, they asked her to send medical literature on the topic, but after a while stopped responding to her emails. In the end, she was only allowed to review the completed guideline in person for a few minutes — which differed from the version later published in Orvosi Hetilap. That earlier version did not include CBT or exercise therapy as recommended treatments. “For someone suffering from this illness, even the cognitive effort of quickly reviewing such a text is extremely taxing,” she said.
According to Szarvas, the authors did not review medical literature and merely wrote a medical opinion, which is problematic because none of them are experts in the disease, and she believes they had not previously worked with it. “The guideline wasn’t based on objective criteria or rules, but on consensus. This is currently just a consensus among the participating doctors on how to treat it,” she said.
The domestic guideline also omits which therapies are recommended or not recommended for severe ME/CFS patients — another important point. In contrast, the NICE guideline includes a dedicated section for those with more severe forms of the illness. This is particularly important because, while rare, the condition can become so severe that patients are bedridden and require full-time care. Given the lack of specialists in Hungary, a clear guideline could be extremely helpful. “This is a much more serious illness than people usually assume based on its name,” Szarvas Ágnes added.
The Ministry of Interior, the Medical Professional College, the lead author of the guideline Gábor Simonyi, and Orvosi Hetilap were all contacted about the matter. The latter responded that the next issue of the journal will also cover the topic of this illness.
