By David Tuller, DrPH
In April, the Hungarian journal Orvosi Hetilap [Medical Weekly] published an article called “Interdisciplinary consensus statement about the diagnosis and treatment of chronic fatigue syndrome/myalgic encephalomyelopathy.” The goal, according to the abstract, “is to provide appropriate information for professionals working in the Hungarian health care system: physicians, psychologists, physiotherapists, and dietitians.” [The journal site itself includes the English-language version of the abstract.]
Remarkably, the authors managed to mangle the core findings of the 2021 guidelines for ME/CFS from the UK’s National Institute for Health and Care Excellence (NICE).. These guidelines rescinded NICE’s previous recommendations for graded exercise therapy (GET) and cognitive behavior therapy (CBT) as potentially curative treatments. In contrast, the Hungarian consensus statement endorsed both approaches.
Ágnes Szarvas, a patient advocate, had urged Hungarian health leaders to issue official recommendations based on the 2021 NICE guidelines. She has publicly criticized the consensus statement and has blogged about the saga, and her role in it, here, here, and here.
Besides pushing CBT as a treatment, the consensus statement included the following untrue assertion about deconditioning and graded activity.
“For the management of musculoskeletal symptoms, the 2021 guidelines by NICE (National Institute for Health and Care Excellence) emphasized, as in previous recommendations, that fatigue and tiredness may stem from reduced fitness and deconditioning. To address this, they recommended assessing fitness levels and gradually improving and strengthening them through cautious steps and setting small, realistic goals.” [This translation is AI-generated.]
NICE, of course, recommended no such thing. It is hard to grasp how anyone familiar with the issue—as one would expect of these authors–could get these fundamentals so wrong. The NICE document is clear on these points.
Since then, the authors have acknowledged error—thanks to a letter to Orvosi Hetilap from Jonathan Edwards, emeritus professor of medicine at University College London. While the journal has posted the exchange between Professor Edwards and the authors (I have posted both letters below), the consensus statement itself has not yet been corrected. This failure is an obvious violation of publishing ethics.
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An article about the situation recently appeared on Telex, an independent Hungarian news organization. (In this context, “independent” means not under the thumb of the Trump–oops, I mean the Orban–dictatorship. Here’s the text:
“Months ago, the scientific journal Orvosi Hetilap [Medical Weekly] published the new official Hungarian recommendation for the treatment of chronic fatigue syndrome (ME/CFS). [In fact, these recommendations are not official, said Szarvas.] We wrote last week that the report goes against the international scientific consensus on several points and also contains recommendations that may lead to a worsening of the condition. The authors of the recommendation admitted on Thursday that they had indeed recommended therapies that were not recommended .
“The recommendations for chronic fatigue syndrome were revised by the British National Institute for Health and Care Excellence (NICE) in 2021. The writing of the Hungarian recommendation was initiated by Ágnes Szarvas, who is also affected by the disease. ‘NICE has done the work, evaluated it, and it would have been possible to just adapt its guidelines to domestic conditions. They said they would create a domestic guideline and promised me participation from the patient side,’ she told Telex earlier.
“Regarding the recommendation containing outdated elements, Jonathan Edwards, Professor Emeritus of University College London, wrote to the Medical Weekly, to which the authors responded in the Medical Weekly. In it, they acknowledge that what was written in the domestic recommendation is not the same as the recent NICE recommendation, and they no longer recommend the therapies mentioned by them, including cognitive behavioral therapy and progressive exercise therapy.” [This translation is AI-generated.]
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Professor Edwards’ letter to Orvosi Hetilap
Dear Editor,
In a recent article in your journal “Interdiszciplináris konszenzus-állásfoglalás a krónikus fáradtság szindróma/myalgiás encephalomyelopathia diagnosztikájáról és kezeléséről “ (2025 ■ 166. évfolyam, 14. szám ■ 523–531), Gábor et al. misrepresent the opinions and recommendations of the United Kingdom National Institute for Health and Care Excellence.
The authors suggest that NICE ‘emphasized, as in previous recommendations, that fatigue and tiredness may stem from reduced fitness and deconditioning’.
This was not the case. The Guideline explicitly states:
Do not offer people with ME/CFS: physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.
The authors suggest that NICE recommended “assessing fitness levels and gradually improving and strengthening them through cautious steps and setting small, realistic goals”.
This was not the case. The Guidelines mentions “making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits”. However, it is made clear that this is not a treatment for ME/CFS as such (‘not a curative treatment’) and that it was included on the basis that some patients may wish to incorporate exercise into their coping strategy and that it is important to advise them not to attempt to do too much.
I was involved in the 2021 NICE ME/CFS Guideline as the Expert Witness providing testimony on quality of trials for non-pharmacological interventions. The authors’ statements above do not accurately reflect the content of the Guideline. The NICE committee found no reliable evidence for the efficacy of either CBT or incremental exercise for ME/CFS and recommended neither as treatment for the condition.
The authors are entitled to publish whatever views they hold on this subject, but they are not entitled to misrepresent other professionals. This is a serious matter and requires immediate correction. Either the reference to NICE should be removed or it should be replaced by accurate information. I would be grateful for your assurance that the text will be corrected immediately.
Yours sincerely,
Jonathan CW Edwards
Professor of Connective Tissue Medicine
University College London
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Response from authors to Professor Edwards
Thank you for your letter regarding our publication and for pointing out, based on your extensive experience in the field, the misinterpretation we made regarding certain conclusions of the 2021 NICE (National Institute for Health and Care Excellence) guideline. We greatly appreciate your comments, which are a valuable help to us in better understanding the finer points of the guideline in the future.
We would like to clarify that the aim of our publication was to provide an overview of the diagnosis and treatment of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for professionals working in the domestic healthcare system, reflecting the diverse perspectives of international literature.
We acknowledge, however, that our phrasing related to the NICE guideline—especially in terms of its interpretation and statements about therapeutic approaches concerning the issue of deconditioning—did not fully align with the wording of the original guideline.
The NICE quote you referred to highlights that, for patients with ME/CFS, physical activity or exercise programs based on the theory of deconditioning are not recommended. We interpreted that the 2007 NICE guideline had suggested that decreased fitness or deconditioning might be behind fatigue and low stamina and that gradual improvement and strengthening through graded exercise therapy (GET), with cautious steps and realistic goals, could address this.
However, this interpretation does not match the statements made in the 2021 NICE guideline, which instead recommends that “patients adjust their physical activity flexibly (increasing or decreasing it as needed) to gradually improve their physical abilities, while staying within their energy limits.” The new guideline also emphasizes that exercise or physical activity programs based on the theory that ME/CFS is maintained by deconditioning or avoidance of activity should not be recommended for ME/CFS patients.
The NICE committee did not find reliable evidence supporting the effectiveness of either cognitive behavioral therapy or graded exercise therapy in the treatment of ME/CFS, and thus the 2021 guideline does not recommend either. Therefore, we should have accurately reflected this in our writing, as you rightly pointed out in your letter.
Once again, we highly appreciate your clear articulation and persuasive reasoning in correcting what appears to have been a misinterpretation due to our imprecise phrasing. We fully accept and thank you for your observations.
Sincerely,
Dr. Gábor Simonyi and co-authors
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To reiterate–the above letter, even if posted in the journal, does not mitigate the urgent need and ethical obligation to correct the article itself.
(Thanks to Ágnes Szarvas for her help on this post.)