Review (Hungary) Interdisciplinary consensus statement about the diagnosis and treatment of [CFS]/myalgic encephalomyelopathy, 2025, Simonyi et al

Wyva

Wyva

Senior Member (Voting Rights)
Interdisciplinary consensus statement about the diagnosis and treatment
of chronic fatigue syndrome/myalgic encephalomyelopathy

Simonyi Gábor dr ■ Bedros J. Róbert dr. ■ Réthelyi János dr. Polgár Anna dr. ■ Kiss Emese dr.


Chronic fatigue syndrome/myalgic encephalomyelopathy is a disease entity that has become recognized in the international literature during recent decades, but is less acknowledged in the Hungarian medical literature. Its symptoms are diverse, including somatic, cognitive, psychological and functional symptoms. The etiological background of the disease is unclear. However, the number of patients is rising, hence it is important to review the relevant literature. In this paper, we explore the above questions through the presentation of the international literature and guidelines, our goal is to provide appropriate information for professionals working in the Hungarian health care system: physicians, psychologists, physiotherapists, and dietitians. We also suggest potential treatment options for chronic fatigue syndrome/myalgic encephalomyelopathy.

Paywall: https://akjournals.com/view/journals/650/166/14/article-p523.xml
 
This is the Hungarian consensus recommendation for ME/CFS. It is bad news. As some of you may know, I was allowed to see the text before publishing. This was NOT the text I saw. A lot of it was the same or very similar, but key parts were added to the published version.

Most of the text is more or less accurate but not without problems, however, the treatment section was not what I saw. The paper is behind a paywall and in Hungarian but here is an English version of the treatment section:

Therapeutic Options

There is no specific therapy known for the disease; however, both non-pharmacological and pharmacological therapies can help alleviate the severity of symptoms [24]. Primarily, cognitive behavioral therapy should be applied in treatment, and the introduction of medications should only occur in well-justified cases.

Among the non-pharmacological treatment options, increasing fluid and salt intake and using elastic bandages on the lower limbs may be suitable for managing orthostatic intolerance. To support cognitive functions, it is recommended to keep a deadline/activity diary (see Table 5). To counteract sound and light irritation, earplugs, eye masks, or sunglasses can be used. Patients should avoid foods known to cause intolerance.

In addition to these, several expert opinions propose suggestions regarding pharmacological therapy. In cases of sleep disturbances, international guidelines recommend trazodone, clonazepam, tricyclic antidepressants, and suvorexant. It should be noted that cognitive behavioral therapy approaches are also effective in treating sleep disturbances, and the prolonged use of the above medications is only acceptable following psychiatric evaluation and with appropriate indications. Currently, suvorexant is not available in Hungary.

Methylphenidate, modafinil, or dextroamphetamine may improve cognitive function; however, these medications can only be used for diagnosed attention deficit hyperactivity disorder (ADHD) based on their indications, and the risk of addiction must also be considered (especially for methylphenidate and dextroamphetamine). Improvements have been reported following fludrocortisone therapy and fluid therapy. In some severe cases of orthostatic intolerance, intravenous fluid administration can stabilize the condition. Gabapentin, pregabalin, low-dose naltrexone, and duloxetine may be suitable for pain relief.

All pharmacological therapies should be started at the lowest effective dose, and polypharmacy should be avoided. Some experts with significant experience in treating this disease have successfully used off-label antiviral drugs and immunomodulators.

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 [25]. Subsequent meta-analyses involving large patient populations observed that some patients reported symptom worsening due to post-exertional malaise (PEM).

Energy management, which is also recommended for treating chronic fatigue syndromes caused by inflammatory musculoskeletal diseases, may be an option in treating this disease as well [26]. Patients need to be taught how to focus their limited energy on daily activities and specific tasks. A group of patients also did not respond well to the standard therapy of cognitive behavioral therapy, highlighting the need for research into new methods [27].

It is advisable to consult with specialists experienced in treating this disease when developing a treatment plan or facing therapeutic challenges.
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This was not in the text that I saw. The text I saw just didn't say anything about CBT or exercise and such. This is for sure as this was what I was mostly looking for when I read it. This is what I wanted to spot.

This is disgusting and there is more to this story that makes it disgusting, which I'm going to share in this thread. (But I need to pace and gather my thoughts a bit.)

They also clearly didn't consider any feedback that I gave them after reading the paper. I mean I told them to use the term ME/CFS instead of CFS/ME as that is currently what the literature mostly uses. What they did was that they kept CFS/ME and they even turned ME into encephalomyelopathy and they even explain it that this is becoming the accepted term in medicine now. Jesus.

They don't say the disease is psychosomatic or that it is fear of exercise etc in the text, actually a lot about the etiology is kind of alright. But the treatment section is appalling. It is an outright lie about the NICE guideline among others.

As I said, it is behind a paywall but anyone interested in an English version, let me know.

More to come from me on this.
 
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 [25].
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This is appalling.
 
Oh and some "fun" tidbit" from the beginning: "The authors dedicate their study, prepared at the request of the Editorial Board of the Medical Weekly, to the memory of Ignác Semmelweis, on the 160th anniversary of his death."

Ignác Semmelweis was the doctor other doctors ridiculed and didn't take seriously, when he told doctors to disinfect their hands. He is probably turning in his grave right now that something like this is dedicated to him.

And this is the quote at the end of the paper:
“Dulcis enim labor est, cum fructu ferre laborem.”
(Toil is sweet when it bears fruit at the end.)"

:banghead:
 
Wyva said:
Oh and some "fun" tidbit" from the beginning: "The authors dedicate their study, prepared at the request of the Editorial Board of the Medical Weekly, to the memory of Ignác Semmelweis, on the 160th anniversary of his death."

Ignác Semmelweis was the doctor other doctors ridiculed and didn't take seriously, when he told doctors to disinfect their hands. He is probably turning in his grave right now that something like this is dedicated to him.

And this is the quote at the end of the paper:
“Dulcis enim labor est, cum fructu ferre laborem.”
(Toil is sweet when it bears fruit at the end.)"

:banghead:
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Cruelly ironic.
 
So the story in short (this is mostly what you could read from me about the process if you followed my advocacy - newer info in the next post after this one):

First, the Ministry of Interior and the Health Colleges promised me a guideline after my letters. I told them I would like to participate as a patient. They agreed and said I should do nothing, I would be able to participate, meaning I had the right to consult.

Then I heard nothing for a long time or even when I did, it was a very brief answer and many of my questions were just ignored. I kept sending them letters, including the one with patient testimonies about how bad our situation in healthcare is.

In another very short reply they started talking about a consensus recommendation instead of a guideline. But they didn't inform me about this or gave me a reason, they just started calling it that.

Such a recommendation is much worse than a guideline as a guideline looks at the evidence and a consensus is just a consensus. I kept pressuring them and got like 5 different (vague) answers from 3 different people about why it suddenly became a consensus recommendation.

At this point I sent them a recommendation about me that I got from prof Edwards. Haven't heard a beep back, just that I should wait for the draft.

As I heard nothing for a long time, I messaged them again about the draft earlier this year. The next day I got a call from Beáta Sebestyén, the person from the Ministry who was coordinating the work around the paper. She said it would be published soon. (I wonder if she had ever even informed me about this, had I not sent another letter.)

I asked her if I can give feedback as was promised. First, she said "I haven't even considered that", after my participation was promised multiple times and the recommendation I sent them. I was clearly upset about this and then she changed course and basically told me off and said things like: "of course you can give feedback, have I ever gone back on my words? This will be a very progressive opportunity from us that you as a patient can give feedback"

And this is how I went to meet the head of Psychiatry (of the Health Colleges) and Beáta Sebestyén in person.

To be continued in the next post with new info.
 
Wyva said:
Oh and some "fun" tidbit" from the beginning: "The authors dedicate their study, prepared at the request of the Editorial Board of the Medical Weekly, to the memory of Ignác Semmelweis, on the 160th anniversary of his death."

Ignác Semmelweis was the doctor other doctors ridiculed and didn't take seriously, when he told doctors to disinfect their hands. He is probably turning in his grave right now that something like this is dedicated to him.
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Oh, the poor quacks and abusers that the patients don’t want to listen to..
Wyva said:
And this is the quote at the end of the paper:
“Dulcis enim labor est, cum fructu ferre laborem.”
(Toil is sweet when it bears fruit at the end.)"

:banghead:
Click to expand...
According to my googling, that’s a phrase from Cato, a Latin book of proverbial wisdoms and morality from the roman times that was a popular schoolbook in medieval times.

They also left out the first part:

Quod nocet, interdum, si prodest, ferre momento ;
dulcis enim labor est, cum fructu ferre laborem.

What is harmful, sometimes, if it is beneficial, to bear for a moment ;
for sweet is labor, to bear labor with fruit.
 
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I met János Réthelyi, head of Psychiatry and Beáta Sebestyén from the Ministry.

Réthelyi said he is someone who loves patient advocacy and presented himself as someone very open to that. Than basically his second sentence was that this disease is the same as depression just without the mood disorders.

And this is when I knew he knows nothing about the disease and I wondered if he even read the material I sent them.

He also said most doctors have no idea about ME/CFS, many of them don't even believe in its existence. And then right after this he started telling me off for asking them for a guideline as that is something patients should not do, patients should not tell doctors what to do. Again, I'd like to point out how ridiculous this is, just after he told me how important it is to have patient advocacy and how he likes that kind of stuff and how he just also said that doctors don't even know about the disease and dismiss it. Mindboggling how he somehow thought the patient advocate should be told off in this situation for trying to change the situation.

And actually, according to the law, patient orgs can suggest a guideline. Patient orgs or patients can even participate in a guideline (as it was even promised to me first). Réthelyi is not even right in any way about this.

The conversation was very heated at this point, obviously. He even accused me of appyling "political pressure", as a politician from the governing party helped me get through to the Ministry about the situation of ME/CFS (after I sent several letters to key insitutions and people in healthcare and everyone ignored me). Which is the funniest thing of all he said, I have to add. János Réthelyi's father is Miklós Réthelyi, who was health minister under Orbán from 2010-12. János, the son accusing me of such a thing, may even actually know Orbán in person for all I know. I don't have any ministers or politicians or any kind of influential people in my family. I'm the peasant in this story. And this guy with the minister father serving the regime and his privileged life is accusing me of applying "political pressure" on him is appalling.

Now that I'm here, I have to add that Róbert Bedros, another author also has very close ties to the government and Orbán. I read it at some point that he even was (or is) a chief medical advisor to Orbán. And I'm the one applying political pressure to these guys. :rofl::rofl::rofl::rofl: They must have been terrified of me, random peasant woman.

Back to the conversation. He asked me what I have to say, so as someone who at this point didn't know the content of the paper at all, I started to talk about the problem with GET and CBT and the subjective outcome measure/unblinded trial problems and that these are just placebo at best. I really did talk a lot about this and he listened without too much interjections. I talked about PEM and the delay that comes with PEM, that doctors shouldn't recommend exercise and he looked like all of this was some alien concept to him, something he has never heard before. I even had to spell out post-exertional malaise to him, because he didn't understand first and looked like he was hearing it for the first time. So at this point I thought OK, this guy clearly never read any of the IOM, etc papers, maybe it was some PhD student who actually did all the work.

At this point I was informed I cannot take the paper with me, I only had a couple of minutes to read it there and that was all the feedback I could give. The paper I saw had problems but it didn't push CBT, GET, or a psychosomatic explanation. It wasn't great, it was acceptable. It didn't look terribly problematic, so I was OK with what happened before, thinking this would be the final paper.

Oh, I forgot to add he also told me how we patients shouldn't bother doctors with guidelines as they are very busy and everything. And I asked them, OK, so should patients just go and sit in the corner forever or what. And he said, oh, that's not what he said. ....

I also said 'Nothing about us without us" a couple of times, which he seemed to understand and decided to ask me for my email address so he can contact me for a commentary that I could write for the published paper. Never heard a beep from him.

I may remember other things later but this was it in general. It is so appalling on so many levels. I really want all this to be written down, so that there will be some record of how this happened. It is just disgusting on many levels.

Post edited to comply with forum rules.
 
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I am so absolutely angry for you @Wyva . This doctor seems completely oblivious to the massive power indifference, and seems to be (intentionally or not) using very manipulative language, gaslighting you about what you’re allowed to do, and on top of that being extremely inconsiderate of the situation you are in.

And this is not to mention, that on top of that, you have PEM, which he clearly even know about [someone writing a consensus statement on ME/CFS, having never heard of the word PEM is such a farce], but you have to deal with the aftermath of the mental exertion and stress possibly giving a lasting toll on your health, which he was completely and rudely oblivious too.
 
Wyva said:
Oh and some "fun" tidbit" from the beginning: "The authors dedicate their study, prepared at the request of the Editorial Board of the Medical Weekly, to the memory of Ignác Semmelweis, on the 160th anniversary of his death."

Ignác Semmelweis was the doctor other doctors ridiculed and didn't take seriously, when he told doctors to disinfect their hands. He is probably turning in his grave right now that something like this is dedicated to him.

And this is the quote at the end of the paper:
“Dulcis enim labor est, cum fructu ferre laborem.”
(Toil is sweet when it bears fruit at the end.)"

:banghead:
Click to expand...
That reads to me like 100% trolling, but only because I know how deeply disturbing medical professionals can be about such things, based on a long history of this typical behavior. Very petty.
 
Just sent this to the Ministry of Interior and the Health Colleges so that they are aware that I know about this. It may be a bit harsh near the end but I want to have a record of this, that this was even actually pointed out to them by me and the gravity of the situation properly explained. Because if they are really planning to send this out to every GP and inform all of them, that's not going to be good:

Chatgpt translation:

Here is the English translation of your letter:

Dear Beáta Sebestyén and the Professional College,

I read the published consensus recommendation with regret — in fact, with shock — because it not only differed significantly from the text you presented to me prior to publication, but it contains false, misleading statements that are harmful to patients' health and contradict international guidelines.

The therapeutic section was nothing like this when the material was presented to me. In this section, you write, among other things:

"For the treatment of musculoskeletal symptoms, the NICE (National Institute for Health and Care Excellence) guidelines published in 2021, similar to previous recommendations, suggested that fatigue and exhaustion might be due to reduced physical fitness and deconditioning. To address this, they recommended assessing fitness and gradually improving and strengthening it, taking cautious steps and setting small, realistic goals [25]. Subsequent meta-analyses involving large patient populations observed that some patients reported worsening of symptoms due to post-exertional malaise (PEM). In managing the disease, energy management is also considered an option, as recommended for managing chronic fatigue syndromes caused by inflammatory musculoskeletal diseases [26]. Patients should be taught how to focus their reduced energy on daily activities and specific tasks. A group of patients also did not respond well to cognitive behavioral therapy (CBT), which is also recommended as standard therapy. Therefore, further research into new methods is necessary [27]."

In contrast, the cited NICE guideline says nothing of the sort — it actually says the opposite:
https://www.nice.org.uk/guidance/ng206

1.11.14
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.

Contrary to your claims, therapies based on deconditioning are contraindicated according to NICE. NICE does not explain the illness as being due to deconditioning. Both this and CBT were downgraded by NICE, which did not find a single convincing clinical trial — all evidence was rated as low or very low quality, without exception.

These are not therapies for ME/CFS, and they can cause serious harm to patients. Furthermore, you did not properly explain what energy management actually is — that it is specifically about avoiding deterioration due to exertion (while you, on the other hand, recommend exertion-based therapies).

I request that you do not distribute this publication to general practitioners, or anyone at all. This could cause a deterioration in patients' health, which would be deeply questionable not only from a human and medical ethics perspective but possibly legally as well.

And it is not just about the patients — you are also deceiving the doctors by misrepresenting what the NICE guideline actually states. Whose responsibility will it be if doctors, following your misleading, inaccurate claims about NICE (since NICE says the exact opposite of what you claim!!!), end up causing deterioration in their patients' conditions? Hmm?

This is not a matter of "some patients not responding well" to these therapies. These are not therapies for this illness! One of the fundamental shifts in the medical literature in recent years has been the rejection of these treatments because they do not lead to improvement — on the contrary, they can further damage the health of people with ME/CFS. Please, stop sending such material to general practitioners.

Let’s speak openly, because I have no patience left for this charade. You lied to the patients when you promised guidelines. You lied to the patients when you promised participation. You lied to the patients when you promised me meaningful opportunities to give feedback (being rushed to skim through the material in a few minutes does not count). You lied about what would be in the publication — because this is not what you promised — and even Réthelyi lied when he promised to contact me after asking for my email address. And now, as the final twist, you are lying to the doctors within the publication itself about what the NICE guideline actually states about the disease. And by doing so, you are endangering the health of sick people.

Therefore, even though I assume we would only receive yet another lie in response, I ask that — if you wish to entertain us with another falsehood — you do so in writing, by letter, so there is a record of how the Ministry of the Interior and the Professional College are deceiving patients.

If you have even a shred of humanity or genuine medical dedication, you will not circulate this recommendation to general practitioners and risk playing with patients’ health.

And one more thing: you write that this document was prepared to mark the 160th anniversary of Semmelweis’s death. Ignác Semmelweis discovered that hand disinfection saves lives, yet his colleagues mocked him and did not take him seriously. Today, we ridicule those doctors for their ignorant stubbornness. If Semmelweis could see that a recommendation dedicated to him misrepresents international guidelines and endangers people's health, based not on evidence but on outdated convictions of Dr. X, Y, and Z, he would be turning in his grave. He is turning in his grave.

Please, do not send this to general practitioners — it will undoubtedly cause real harm to people’s lives, and you will bear the responsibility.

Respectfully,
Ágnes Szarvas
https://mecfs.hu/
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Thanks. I also actually wrote an article about this in Hungarian of course and I'm planning to send both my letter and my article to the Hungarian media as well as key political activists, NGOs etc, basically anyone who may show interest in this. We do actually have independent media here, I think sometimes people believe we don't. It is just smaller than before. They ignored us so far though but maybe this story will be interesting enough for some of them.

I'm just not sure if I should wait for a reply from the Ministry etc or not before that. They may not reply at all or may send some hilariously absurd BS answer that may be worth circulating.
 
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