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Just a quick reminder that this project is still accepting messages this week. :)

I don't really have a definite time scale yet. I can translate these bit by bit, gradually, so if someone shares their message a bit later, it is fine too, it won't be too much extra work probably. I think I'll stop accepting new messages for this project at some point but I'm sure it will be...

Abstract Background Long-term health consequences following acute SARS-CoV-2 infection, referred to as post-COVID-19 condition or Long COVID, are increasing, with population-based prevalence estimates for adults at around 20%. Persons affected by Long COVID report various health problems, yet...

Thank you, these are great! :) I'm still looking for more, so bumping the thread up. :)

Thanks. Yes, I've actually seen it, just didn't have the energy to read through it yet. :) Yes, it is true, there isn't any kind of guidance or protocol and that is one of my arguments when I send letters about adapting the NICE guideline to people in key positions. The task here is not to...

There is a "too long, didn't read" version at the end. So my problem is the same as last year: I wanted to write an article for ME Awareness Day based on how pwME in Hungary are affected by the disease, how healthcare, social services etc treat them, how this affects their family and social...

This is my nightmare. I'm in year 6 and I've had hypersomnia since the beginning. I sleep very well all night, then wake up in the morning, have breakfast, drink my coffee, read some news, then often go back to bed to nap more because of the literal "unrefreshing" sleep (this usually means...

Fatigue due to long COVID-19 requires slowing down Scheibenbogen and dr. Martina Lukas explain PEM and pacing and staying within your energy limits. Edit: I just realized that this is a Turkish news site actually. ”Shortness of breath, muscle aches and heart palpitations can also worsen if you...

195th General Assembly of the Hungarian Academy of Sciences - The long COVID syndrome: Lingering illness after the pandemic Date: 5th May, it can be followed online. Programme: My comment: some of you may remember that they organized a long covid symposium a few months ago. It was mostly...

Edit: Countries that are included in this thread in alphabetical order: Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Greece, Kosovo, Moldova, Montenegro, North Macedonia, Romania, Serbia, Slovenia I used the broadest definition of SEE here but there are overlaps with other...

I feel you. I think my family still treats me and my disease relatively well, compared to some of the stories I saw in my own ME/CFS group. They never disbelieved me for example or told me to just get myself together or thought the problem to be psychological. But it doesn't really go beyond...

News: the 2nd Annual Flat Earth Award by the Skeptic Society goes to Gábor Varga, the guy who pushes c-peptide as a cure-all drug (now advertised as a "cosmetic spray" for legal reasons after constant battles with the advertising authority). Well done, basically he is the No. 1 quack in the...

Leronlimab and the pharmaceutical company CytoDyn who investigates it don't really have a good reputation: CytoDyn Hit with Two Clinical Holds as Optimism Appears to Wane "In May 2021, the FDA issued an unusual public scolding of the company, accusing it of misrepresenting clinical trial data...

Source: https://finance.yahoo.com/news/hidden-within-us-140500557.html On April 23, 2022, World Book Day, Dr. Samuel Mann, a physician, researcher, and prominent hypertension specialist at New York-Presbyterian Hospital / Weill Cornell Medical College, will release his latest health and...

Well, to be honest, Semmelweis University (regarded as the best medical university in the country) went ahead and started a Traditional Chinese Medicine BSc programme. Google Translate And if you want to hear something really crazy, the Minister of Human Capacities (this is where healthcare...

A couple of weeks ago I wrote something about the thermal bath/spa industry and that it seems they are the ones mostly after long covid patients in Hungary with all these ads of their special post-covid packages. Well, looks like I wasn't wrong. The National Academy of Sciences and the Ministry...

I remember when professor Janszky gave that presentation on ME/CFS at the long covid symposium of the National Academy of Sciences here, then he immediately brought up the wide range of the reported prevalence of long covid (his examples were between 10% and 60% I think). He talked about this is...

There is also a similar one that has been recently approved by the Hungarian Medical Research Council: Title: Detection of certain components (proteins, RNA) of SARS-CoV-2 in COVID-19 and post-Covid-19 by organ Applicant: Semmelweis University MSc II. s. Institute of Pathology Supervisor: Dr...

I often also see this as: motivated, competitive, aggressive Type A personality = patients who don't agree with me about this CFS thing. But otherwise yes, you can fit almost everyone in those two categories if you try hard enough.

An update of what is going on advocacy-wise (not much right now but maybe soon): Maybe you remember that after Evelien Van Den Brink talked about ME/CFS in the European Parliament, a Hungarian MEP appeared supportive of the cause and when I messaged him, he offered to talk to the Secretary of...