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Abstract Background: Patient participation can contribute to establishing high-quality, sustainable health services. This study explored patient representatives’ perceptions of developing primary healthcare services to identify contextual factors that matter to their participation. Methods...

I'm not sure at this point we have a lot of legal ground or even willingness from potentially useful organizations to help. I mean some of you may know that recently the Hungarian ME/CFS consensus recommendation has completely misrepresented what the NICE guideline says (it said NICE still...

New Jake Hollis article in Psychology Today: Can Neuroscience Explain What Makes Fatigue Chronic? The science of predictive processing sheds new light on persistent fatigue. "Key points The new science of predictive processing is prompting researchers to understand fatigue in a new way...

Full title: The potential therapeutic approaches targeting gut health in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a narrative review Chou-Yi Hsu, Irfan Ahmad, Rana Warid Maya, Mayada Ahmed Abass, Jitendra Gupta, Abhayveer Singh, Kamal Kant Joshi, J. Premkumar, Samir Sahoo &...

I see the first two authors contributed equally to this paper, one of whom is Ádám Dénes. I've mentioned him several times here on the forum as he is one of the Hungarian long covid researchers most prominently featured in the media here. Unfortunately he never mentions ME/CFS or even just PEM...

In the very last paragraph you can read that Dr Ziaja was invited to speak at the ME/CFS conference in Berlin in May. In an earlier post in this thread I mentioned several concerning things about this group. And another odd one is that I couldn't find Dr Ziaja among the speakers at the...

I'd like to add some more info because Leitzke has been heavily promoting this nicotine patch treatment in social media and it really concerns me since there is literally zero evidence it works. The above study is based on one case study and a survey that claims 73% of respondents showed...

Saw this on the Facebook page of the Czech ME/CFS patient org. Facebook translation: ME Day 2025 exhibition is here! You can now find a special exhibition dedicated to myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) at the Westfield Chodov center. On the information panels...

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...

I think we have another Slovak member here on the forum called @tuha, so I'm tagging him to alert him, he will probably find this interesting!

There was a member in my group who was diagnosed with SFN by a specialist who teaches at a university. Then he went to another doctor as part of his quest to understand what is going on with him and he mentioned the SFN diagnosis. This other doctor shook his head in disbelief and said something...

No statistics in Hungary either. Hungary uses ICD codes for official diagnoses but even checking the data for medical records wouldn't work well as doctors don't even know the code for ME/CFS or that it even has a code. I think very few people walk around here with an actual diagnosis.

Do you mean which one? Microsoft Designer

HCPLive: Aquatic Exercise Improves Physical, Psychosocial Outcomes in People With ME/CFS “Six months of self-paced, low-moderate aquatic exercise significantly improved fatigue, depression, walk distance, lower limb strength and peak expiratory flow. PEM was not worsened by the intervention...

This is such an interesting term. Not to be insensitive but I just couldn't resist asking AI what it thinks spiky-leaky syndrome must look like.

This has happened to me too. My GP was away for some reason and another GP stood in for him. I went there with some throat infection that kept recurring over several weeks. She prescribed me antibiotics. I went back later because my symptoms came back again afterwards and my GP told me this was...

Oops, you are right, sorry. I have edited my post. ME moment!

Not strictly long covid but I'm posting this because someone might find it interesting.

Abstract Aging and COVID- 19 are known to influence DNA methylation, potentially affecting the rate of aging and the risk of disease. The physiological functions of 54 volunteers—including maximal oxygen uptake (VO₂ max), grip strength, and vertical jump—were assessed just before the COVID- 19...

I'd like to share some info that made my spidey-sense tingle. This study is associated with the German Prof Stark Institute. Actually this is what made me look this topic up, as recently this place has started popping up in my group as groundbreaking ME/CFS experts. Some hype is growing around...