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ICMRA (International Coalition of Medicines Regulatory Authorities) statement on the safety of COVID-19 vaccines This is not the only statement but the one most relevant to us: Long COVID and vaccines Scientific evidence shows that infection with SARS-CoV-2 can lead to long COVID. This...

I haven't watched it yet, but this is a video from the 9th Congress of the European Academy of Neurology One of the people participating in the discussion was Gracemarie Bricalli, representing the EMEA, talking about ME/CFS of course. Edit: she starts talking at around 13:30

I don't understand how discovering something that the patient has no influence over at all could lead to more patient blaming. The point of the BPS patient blaming is that the patients could improve if they really wanted to. People have no influence over their genes. Actually, DecodeME...

I found this in the Hungarian-language media of the Hungarian minority in Slovakia, but this article is about a Slovak person. Warning: the content may be disturbing! Google translate: The terminally ill Slovak actress chose euthanasia

Just an abstract from the PhD Scientific Days at Semmelweis University but the authors are Johanna Takács and Ákos Koller, who are two of the people doing LC research here I posted an interview with them here earlier...

WHO: Nearly 36 million in Europe suffering from 'long COVID' One in 30 Europeans may have developed "long COVID" in the first three years of the pandemic, the World Health Organization's (WHO) European office said on Tuesday, warning that the coronavirus has not gone away. Since 2020, nearly...

To sum up the situation in the Czech Republic (from what I understand and my understanding probably doesn't give the full picture). The patient organization wanted the new NICE guidelines to be adapted for the Czech Republic. They put a lot of work in it but the process was unfortunately...

Also, I'm not officially diagnosed since such a diagnosis is quite difficult to get here in general, it is just not really a thing here. Thus if they ever diagnose me, it will be after my covid infection that I had last year. However, my post-viral symptoms started years before that. But if the...

I have talked about my pretty bad water retention elsewhere on the forum a couple of times. When I get very thirsty for no reason, I know it is a sign that I'm getting worse and it will soon just end up as huge water retention on my body. After I get really swollen, my body just wants no more...

This is the author's Twitter, literally it is just a collection of retweets of happy recoveries and rapid improvements, and it reminds me a bit of an LP account. If nicotine patches really give you significant rapid improvement, they should do a trial, it shouldn't be a social media thing...

It is the NIH Intramural ME/CFS study that many of us are waiting for to get published in the next couple of months (or maybe in a year). It is really just the publication itself that we are waiting for now. Thread...

Moved posts I have this vague memory that someone somewhere said it would probably be published until the end of this year. But I cannot seem to find this after a quick search, so it is entirely possible that my brain is just making it up.

This DualDur/LymeDiagnostics company mentioned above is actually Hungarian, run by a Hungarian family, so I can give some insight. A few years ago there were several articles about the company in the media here with titles like: "Groundbreaking Hungarian invention to test Lyme disease"...

I laughed so hard at that. Maybe these people really just lack basic logic and don't even understand what they don't understand. Here we say about such things that they can be understood with "a peasant's rational sense". But somehow such basic logic escapes these people, despite being professors.

Yes, looks like they want to develop a guideline. We don't currently have any such thing for ME/CFS, so it will be interesting to see what direction this will actually go in the end, how reasonable it will be. I'm happy to see that Internal Medicine and Immunology are interested in this, not...

Recently I sent a letter to the Department of Quality Improvement and Methodology (a department under the Secretary of Health) about the ME/CFS situation in Hungary. I don't really have too much time right now but this is the answer I have just received (Google Translate):

Another article from Germany: Post-COVID vaccination syndrome: What do we know? Like long COVID, post-COVID vaccination syndrome is characterized by a wide variety of symptoms and clinical pictures including chronic fatigue syndrome (CFS/ME), migraines, muscle pain or cardiovascular diseases...

BioNTech faces first German lawsuit over alleged COVID vaccine side effects Rogert & Ulbrich says it has filed about 250 cases for clients seeking damages for alleged side-effects of COVID-19 vaccines. Another law firm, Caesar-Preller, says it is representing 100 cases, with both firms saying...

An interview with Dr. Vesna Ikonić Marinković, a pediatrician from Serbia, who has recently started suffering from ME/CFS, probably after a covid infection. Google translated version: CAN'T SLEEP, DO YOU FEEL CONSTANTLY TIRED? Doctor Vesna reveals that it is a serious DISEASE

I can't really add much, as I'm not medically trained but I'm interested in anything that may explain my fluctuating water weight issues. I'm really really tiny in every way but managed to gain 3 kg in 4 days last week for example, all water. That's huge. And that's on top of my already bad...