I think if I were doing it I would contact the publications as soon able to, and hope that a journalist thinks it's an interesting enough story for them to contact the Ministry to ask for a response they can publish.
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Review (Hungary) Interdisciplinary consensus statement about the diagnosis and treatment of [CFS]/myalgic encephalomyelopathy, 2025, Simonyi et al
rvallee
Senior Member (Voting Rights)
Second Trish here. This was fair, and excellent, and some harshness is deserved because of the magnitude of the failure here. There are some things that can't be said without sounding like they are accusations, because they simply are.
I frankly find the quote and the Semmelweis bit to be petulant trolling, and this trolling barely reflects any better than the actual content they put together. I simply don't understand how professionals can be so indifferent to their job. This is simply not professional behavior, and I don't just mean the obvious trolling.
Wyva
Senior Member (Voting Rights)
If you read back just a little bit in this thread, you can find that I sent a rather harsh letter to the Ministry of Interior (Beáta Sebestyén specifically) and the Health Colleges who created the consensus statement. In that latter I told them they had misrepresented the NICE guideline and were misleading clinicians about the treatment of ME/CFS (GET and CBT). And that they will be responsible for any deterioration of pwME that results from this misrepresentation.
Today I got a response, which is simply nothing. This is not even the same department I was corresponding with (not the one led by Beáta Sebestyén):
ChatGPT translation:
So basically the reply is "noted", to quote Cochrane.
This is terrible. I have also messaged news outlets, NGOs, certain political parties and some doctors that I believed may raise an eyebrow but got no reply from anyone.
Literally I can't do anything, even though this is a lie, a misrepresentation of actual clinical advice from NICE that will affect many pwME. I don't even understand how no one at all cares when this is such an obvious offence against science and against people getting the right medical care.
Today I got a response, which is simply nothing. This is not even the same department I was corresponding with (not the one led by Beáta Sebestyén):
ChatGPT translation:
So basically the reply is "noted", to quote Cochrane.
This is terrible. I have also messaged news outlets, NGOs, certain political parties and some doctors that I believed may raise an eyebrow but got no reply from anyone.
Literally I can't do anything, even though this is a lie, a misrepresentation of actual clinical advice from NICE that will affect many pwME. I don't even understand how no one at all cares when this is such an obvious offence against science and against people getting the right medical care.
Utsikt
Senior Member (Voting Rights)
It’s even worse. They didn’t acknowledge the content at all. Even the automated messages from email support contains more info than this reply.
Wyva
Senior Member (Voting Rights)
Jonathan Edwards messaged the journal Orvosi Hetilap about the misrepresentation of the NICE guideline in the Hungarian consensus recommendation for ME/CFS. Today they have published a response from the authors: https://akjournals.com/view/journals/650/166/27/article-p1079.xml
The response is behind a paywall (just like the consensus recommendation), so I cannot share it publicly. I also happen to be the owner of an English ChatGPT translation, which I also won't share publicly. :ahem-ahem: :wink-wink:
The response is a bit defensive but mostly it acknowledges that what they said in the recommendation is not what the NICE guideline said about GET and CBT at all. They acknowledge that NICE downgraded these therapies in the 2021 guideline and does not recommend these anymore for ME/CFS.
So this is good! However, this is a separate article and you cannot see it if you read the original guideline, which bothers me.
But Jonathan Edwards is great.
The response is behind a paywall (just like the consensus recommendation), so I cannot share it publicly. I also happen to be the owner of an English ChatGPT translation, which I also won't share publicly. :ahem-ahem: :wink-wink:
The response is a bit defensive but mostly it acknowledges that what they said in the recommendation is not what the NICE guideline said about GET and CBT at all. They acknowledge that NICE downgraded these therapies in the 2021 guideline and does not recommend these anymore for ME/CFS.
So this is good! However, this is a separate article and you cannot see it if you read the original guideline, which bothers me.
But Jonathan Edwards is great.
Wyva
Senior Member (Voting Rights)
I have sent the journal this request (Chatgpt translation):
akjournals.com
Dear Editorial Board of Orvosi Hetilap,
In today’s issue of your medical journal, a Letter to the Editor was published in which the authors of the Interdisciplinary Consensus Statement on the Diagnosis and Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis responded to Professor Jonathan Edwards’ letter, in which he requested a correction from Orvosi Hetilap due to false claims in the recommendation regarding the NICE guideline on the illness.
Levél a szerkesztőhöz
"Levél a szerkesztőhöz" published on 06 Jul 2025 by Akadémiai Kiadó.
In their response, the authors acknowledged the problem; however, the original consensus recommendation still appears on the website in its unchanged form. Are there any plans to issue a correction or to place a warning regarding the misleading medical information? This is not a minor issue — the statements in the recommendation about what the 2021 NICE guideline says are in direct contradiction to the actual content of the guideline.
This recommendation is intended for domestic physicians, who currently have no indication that the article contains seriously misleading information, as no such note is included with the recommendation itself. It is extremely important to indicate and correct this in order to ensure physicians and patients receive accurate information. As it stands, the article containing false claims remains accessible in its original form, without any warning.
Thank you,
Ágnes Szarvas
Wyva
Senior Member (Voting Rights)
I haven't received any reply from the journal yet (maybe I never will) but at least Telex, the news site that broke the story, wrote another article about the fact that the authors acknowledged their statements were not "entirely truthful". Telex is the most widely read news site in Hungary (it is independent).
Chatgpt translation:
Chatgpt translation:
They acknowledged that the Hungarian recommendation created for the treatment of chronic fatigue syndrome is flawed
Months ago, the scientific journal Orvosi Hetilap published a new official domestic recommendation for the treatment of chronic fatigue syndrome (ME/CFS). Last week, we reported that the document contradicts the international scientific consensus in several respects and includes recommendations that could even lead to a deterioration in patients' conditions. On Thursday, the authors of the guideline acknowledged that they had indeed recommended therapies that are no longer advised.
The guidelines for chronic fatigue syndrome were revised in 2021 by the UK’s National Institute for Health and Care Excellence (NICE). The initiative to create the Hungarian guideline was taken by Ágnes Szarvas, who is also affected by the illness. "NICE did the work, they evaluated the evidence — there was an opportunity to simply adapt their guidelines to domestic conditions. They said they would create a national guideline and promised me involvement from the patient side," she previously told Telex.
Regarding the recommendation that contains outdated elements, Orvosi Hetilap received a letter from Jonathan Edwards, professor emeritus at University College London, to which the authors also responded in the journal. In their reply, they admit that what they wrote in the domestic recommendation does not align with NICE’s latest recommendations, and they no longer recommend the therapies they previously mentioned — including cognitive behavioral therapy and graded exercise therapy.
ME/CFS Science Blog
Senior Member (Voting Rights)
Curious to read what you wrote in the letter @Jonathan Edwards
Nightsong
Senior Member (Voting Rights)
A strongly worded letter from JE, and a really good result:
Once again, we appreciate that you have "cleared up" what appeared to be a misrepresentation of our inadequate wording with your articulate and convincing argument. We clearly accept your findings and thank you.
Hopefully the authors will update their guideline soon.
Once again, we appreciate that you have "cleared up" what appeared to be a misrepresentation of our inadequate wording with your articulate and convincing argument. We clearly accept your findings and thank you.
Hopefully the authors will update their guideline soon.
Great work!
Utsikt
Senior Member (Voting Rights)
I’m glad they accept the findings, but that’s a blatant lie. They did not word things inadequately, they worded them falsely and got called out for it.
Jonathan Edwards
Senior Member (Voting Rights)
I forget and it was all in Hungarian!
I think I focused on the quoting of NICE where treatments based on deconditioning were disallowed and then the claim that deconditioning was a key aspect of what needed treating.
I'm surprised their response is actually "we were wrong". Not something I come across often in authors' replies.
Edit: To clarify, they didn't actually say the words "we were wrong", but it sums up their response.
Edit: To clarify, they didn't actually say the words "we were wrong", but it sums up their response.
Last edited:
rvallee
Senior Member (Voting Rights)
Yup to your edit. They seem to frame it as being misinterpreted, rather than being wrong. Same as always. They will most likely find a way to say the same thing slightly differently. This is what psychobehavioral ideology mainly does, after all. Always a problem with the style, never the substance.
Some of the message might be getting lost in the translation, but this part seems to say they were the ones that misinterpreted the NICE guidelines, not that their paper was misinterpreted. So pretty close to "we were wrong":
Though this from the last paragraph seems to be written the other way - that their paper was misinterpreted due to phrasing:
Wyva
Senior Member (Voting Rights)
I have checked the original. In Hungarian there is no ambiguity about what they mean by misinterpretation in that sentence. They mean that their own imprecise phrasing may look like a misinterpretation. They don't mean that their sentences were misinterpreted by others. They mean their sentences were imprecise thus may be seen as misinterpretation of the NICE guideline.
To me it looks like they are trying hard to save face. The reply is a lot longer than what's quoted above and they admit that the 2021 NICE guideline doesn't say what they said. They mention it doesn't recommend GET and CBT anymore and that it didn't find sufficient evidence for these therapies.
So they admit this part but they are trying to save face by saying stuff like "our phrasing could have been more precise" and thus "it looks like misinterpretation".
To me it looks like they are trying hard to save face. The reply is a lot longer than what's quoted above and they admit that the 2021 NICE guideline doesn't say what they said. They mention it doesn't recommend GET and CBT anymore and that it didn't find sufficient evidence for these therapies.
So they admit this part but they are trying to save face by saying stuff like "our phrasing could have been more precise" and thus "it looks like misinterpretation".