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Thanks @NelliePledge It indeed doesn't seem to be particularly problematic. Something I'd like to share though: Janszky always seems to make a big deal out of the inconsistencies in the prevalence of LC. This is how he started his presentation at the LC symposium of the Hungarian Academy of...

The Bell scale probably: https://me-pedia.org/wiki/Bell_CFIDS_disability_scale

My sister says it is also very popular in the Hashimoto's/hypothyroid online groups she is a member of. It indeed seems to work for every disease... o_O

Leitzke is the doctor who promotes nicotine patches for long covid. This seems to be quite a popular treatment with pwLC.

Same experience here. I don't remember the exact dose now but I took vitamin D for quite a while in my early days of ME/CFS after mono/glandular fever, thinking it might be helpful. It did nothing, so I stopped.

I'm not sure if this is true ME/CFS research or not. May be just chronic fatigue.

Now published - see here ************* Kang Wu, Yihuai Zou, Yuanyuan Li, Xiaojie Hu, Yahui Wang, TZ CHEN, Yuhang Chen, Kuangshi Li Abstract Chronic Fatigue Syndrome (CFS) is a disease characterized by unexplained fatigue and impaired cognition for more than six months. Recent studies have...

Unfortunately it is paywalled. My additional info without knowing the content: Andreas Stengel is very clearly a BPS guy who publishes stuff like this and so is József Janszky, who I just call the Hungarian Michael Sharpe and who seems to love to complain about ME/CFS and long covid patients...

Full title: A comparison of genome-wide association analyses of persistent symptoms after Lyme disease, fibromyalgia, and myalgic encephalomyelitis – chronic fatigue syndrome Annemarie G. Hirsch, Anne E. Justice, Amy Poissant, Cara M. Nordberg, Navya S. Josyula, John Aucott, Alison W. Rebman &...

Key points Modern medicine routinely fails to make sense of ME/CFS and long covid. This incoherence, along with wider stigma, leaves sufferers frustrated and confused. A systems view of illness encourages us to consider how states of imbalance arise across bodily systems. Viewing symptoms as...

Full title: Assessment of psychosocial aspects in adults in post-COVID-19 condition: the EURONET-SOMA recommendations on core outcome domains for clinical and research use Stefan Salzmann, Lars de Vroege, Petra Engelmann, Per Fink, Susanne Fischer, Stephan Frisch, Lise Kirstine Gormsen...

An article appeared on ME/CFS on Házipatika, the most visited health website in Hungary. This website is aimed at the general public. The article is a summary of description of the disease and it seems to be based on the CDC mostly (you can spot some of the problematic info you can find in CDC...

NIH must address the twin crises of long Covid and ME/CFS — together By W. Ian Lipkin and Elizabeth Ansell While the emergence of Covid-19 has fostered a massive opportunity to advance our understanding of post-viral illnesses like ME/CFS and long Covid, the RECOVER Initiative has been plagued...

Me too. The person in my group was convinced she had PEM even after she was finally diagnosed with MG. (She didn't seem to have an obvious, typical case of MG and she went undiagnosed for 4-5 years.) Though I remember Jonathan Edwards talked about this elsewhere on the forum and from what I...

The Medical Republic: Cochrane cancels chronic fatigue review five years in Cochrane has unexpectedly cancelled the planned update of its controversial 2015 exercise therapy for chronic fatigue syndrome review, and its independent advisory group of stakeholders are demanding answers. Full...

I just realized I have something similar to the internal tremors sometimes mentioned on the forum. When I have really bad days, my symptoms are the worst right after waking up and I have two symptoms that are only present at this morning time but they also disappear relatively quickly. One of...

To me what is surprising is not necessarily the fact that Nordic countries score high in the various "happiness" etc indexes but that they tend to be quite progressive and modern and forward-thinking. I find it really hard to understand how a country like Norway can be one of the worst offenders...

I posted an article about Pascal Arimont's parliamentary question to the new Commissioner in the EU thread. The question was submitted at the end of last year, so I'm not sure if this was asked independently of EMEC's efforts or is the same thing. Here is the link to the other post...

Just came across this article: Chronic fatigue syndrome, EU still knows too little and calls for research Two million people in the EU and UK alone would suffer, with negative spillover effects of €40 billion annually. Varhely: "Horizon calls revised to invest here. Targeted research can be...

I'm 99% sure SM means multiple sclerosis (MS) in @tuha 's post. The order of those two words is changed here too, so it is easy to mix it up in English.