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

Wyva said:
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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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.
 
Wyva said:
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:
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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.
 
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:

Dear Ms. Ágnes Szarvas,

Thank you for your comments regarding the summary article published in Orvosi Hetilap titled "Interdisciplinary Consensus Statement on the Diagnosis and Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis."

Respectfully,

on behalf of Dr. Márk Perlik
the Head of Department, Head of Secretariat

Dorina Márta Kovács
Secretariat Officer

Ministry of Interior
Deputy State Secretariat Responsible for the Professional Management of Healthcare
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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.
 
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