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

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:

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.

 

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.