Search results

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...

She seems to be intrigued by this topic so I'm crafting a polite message to her about the shift in how ME/CFS is viewed and treated currently and see what happens. She seems to be relying mostly on these articles circulating on the web, so I'm not 100% sure about her own views. Maybe it's BPS...

Long, two-part article about long covid that mentions ME/CFS a lot and talks about PEM. Written by a GP and psychoterapist who periodically writes similar articles on long covid. This one is based on several recent "6 tips to beat long covid" type of English articles. You may remember some...

About malaise: whenever I use PEM in my articles in Hungarian, I give the original English name and a short description too, so people can understand (and I always link a more detailed explanation that I have on my page that includes the different levels of severity and pacing, etc). But I also...

Yes and I of course didn't mean it in a way that you can recover from cancer with your willpower but I meant it as an example of a disease where it is possible to recover, so it actually makes sense to wish cancer patients "get well soon". And people probably have something like that in mind...

Defamation Lawsuit Against Netflix Over ‘Afflicted’ Docuseries Allowed to Proceed A state appellate court has turned down Netflix’s bid to dismiss a lawsuit brought by subjects of docuseries Afflicted who say they were defamed when the show misrepresented their chronic illnesses. In a...

My ME brain kicked in and read this as: "What about just naming it after a planet?" :whistle: And in that case my recommendation would be Pluto with all the controversy around it. (Is it a planet, is it not a planet?) :alien:

I wasn't very young when I got sick (it happened in my early thirties), but I still had this experience. I've never made a secret out of my disease but recently I posted about my illness on my personal Facebook wall and how it is chronic and how terrible it is when people think it is something...

CCCFS Symposium This will take place at the Medical University of Vienna. Google translate: On May 9th (1:00 p.m. - 6:00 p.m.) we want to explain in layman's terms what we – ME/CFS sufferers and experts – have achieved in our project as part of a publicly accessible symposium. In addition...

It's my 6th year since EBV and although I could tell when the acute infection ended, the symptoms afterwards didn't feel like something entirely different and new but more or less the continuation of something that started with EBV: it felt like the immune system kind of got stuck in that mode...

ABSTRACT In this article, we update our earlier analyses of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) economic impact and its National Institutes of Health (NIH) funding versus disease burden, taking into account the anticipated new cases of ME/CFS resulting from COVID-19...

I don't know if it is relevant or not but I remember that in its interim LC guidance the CDC listed MCAS as one of the syndromes long covid can be similar to: Patients with post-COVID conditions may share some of the symptoms that occur in patients who experience myalgic...

It was Fukuda. The study is from 2009, so the IOM criteria or ICC didn't exist back then, only CCC. A lot of people who didn't meet the Fukuda criteria were diagnosed with chronic fatigue and many were diagnosed with some psychiatric disease (I think depression and PTSD mostly). I remember they...

There is a theory that maybe those two language families did share a common ancestor a very very long time ago but it is really difficult to tell now. However, it is not widely accepted. One important thing is that it is not enough to find similar words in two languages. One can find similar...

The funny thing is that Finnish, Hungarian (and also Estonian) belong to a language family that is unrelated to the rest of the European languages. Everyone else belongs to the Indo-European language family (English, Russian, Greek, Italian, etc, all of them) and even languages outside Europe...

I only know the words that are similar in Finnish and Hungarian (both are Uralic languages), like vér/veri (blood), száz/sata (hundred), kéz/käsi (hand), hal/kala (fish), menni/mennä (to go) etc. My family name is Szarvas, which means "deer" the animal, but the literal translation is something...

@rvallee It's in the section "Statements and Releases" and not in the memorandum itself. Here: FACT SHEET: The Biden Administration Accelerates Whole-of-Government Effort to Prevent, Detect, and Treat Long COVID

Yesterday I mentioned Raelan Agle in another post of mine and I also went and checked her channel and this is what I found, a video uploaded 5 days ago: I haven't watched it yet but Greally seems to associate himself with these ME/CFS coaches a bit too often for my taste. I don't know why he...

There has been a conference organized by the "Consensus for Health Circle of Experts" where different kinds of academics (epidemiologists etc) evaluated the response to the coronavirus pandemic. It wasn't very positive, they found it unsatisfactory in several different ways, but that's not my...

Ah, yes, he is denying the ivermectin connection now (that's what FLCCC is mostly about). Let me quote an earlier comment of mine from this thread: "I had to educate myself quite early on on Patterson (and also the people pushing ivermectin) because they had a large social media presence and...