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Basically it is OK for them to make all kinds of unsupported claims, from etiology to treatments to death threats or whatever. It is never OK to challenge them in any way though. Never. That is not how science works. Anyone challenging them is just spreading misinformation. Science never needs...

FB post from Michael Stingl, Austrian neurologist interested in ME/CFS and who is also actively trying to help the situation of pwME. FB translation:

An interview in British Vogue with American actress Selma Blair, who has MS. It can’t be an easy story to tell. Born into a Jewish upper-middle-class family in Michigan, by the time Blair was seven she had lost use of her right eye, left leg and her bladder. Her mother, a judge, feared Blair...

As I had said earlier in this thread, my GP told me to check my EBV antibody levels every year, just in case, for our own amusement, I guess. Last year I got an ambiguous result (my IgM, indicating fresh infection was elevated a bit, despite the fact that the infection happened more than 6 years...

I've just posted it on my website, FB page of the website, FB group (and Twitter, although this one is very new and I don't have followers there yet as it is not popular here). I have a few members in my group who live in the UK and some visitors on my website from there, so I cannot contribute...

I just posted about the cancer-related fatigue study which doesn't seem to be about cancer after all: USA: NIH National Institutes of Health news

The link does seem to work now, here is the abstract, it doesn't seem to be about cancer: Not impressed by the potential bidirectional relationship between depression and fatigue, catastrophizing, questionnaires again. Too many bad experiences with these studies... Also, the MEpedia page...

@rvallee @Kitty The other moderator I have in my ME/CFS FB group is a covid long hauler who lives in the UK. She really wanted to participate but she said only long haulers with a diagnosis of ME/CFS can, which she doesn't have. Not everyone gets this diagnosis even if their symptoms are...

From what I remember, there needed to be consensus on which symptoms were of critical importance and at least 70% of the responses had to agree. Those symptoms, features ended up in the final definition of long covid. PEM got 67%, so it was really close.

This is the thread for the study: https://www.s4me.info/threads/me-cfs-and-post-exertional-malaise-among-patients-with-long-covid-2022-jason-et-al.31036/ And actually it was posted by @ahimsa even back then. :)

https://www.gavi.org/vaccineswork/what-happens-when-you-dont-recover-epstein-barr-virus The author says she had ME/CFS after EBV. (About the author: Priya Joi is a British-Indian science writer based in Barcelona. She was previously a staff writer and editor at the World Health Organization...

I think this shows that the problem is not simply the lack of money to do enough research but the inability to give the money to the right people to do the right kind of research. If my memory serves me right, many researchers involved do not even have experience with post-infectious syndromes...

Unfortunately it is more due to what the market has to offer. :) There is a lot of bigotry here in general. When I was still planning to have kids my "test question" on dates was what they thought about gay people because I wanted to know what kind of future our potential child will have if...

My n=1 sample. Once I went on a date with a cardiologist. To my surprise, half of the time I had to listen to how placebo is real and great stuff, how cancer patients with a positive attitude do better and it really works etc. He responded with this cancer stuff after I told him how it annoys me...

And it can also give the impression that the main message is that illness is bad and it is bad to be chronically ill and we should feel empathy, just like it is bad for people with many other chronic diseases, including cancer or MS etc. While you are very right, the main point here on top of...

From the Austrian ME/CFS patient org's FB page. Fb translation: Here are the links of the press releases from the FB post, translated to English with Google translate: Green party press release People's Party press release

From the text, very interesting: We had been made aware of a CYP who had been assigned the control group even though she had a Long Covid diagnosis and that this had been raised in the CLoCK questionnaire with no action. This raises the question that if one child has been put in the control...

Oh, so they ARE mass producing these studies now.

Oh yes, lots of Norwegian medical students here too (also many from Iran and Germany) and it has been like that for quite a while now. I remember even when I was a student the Norwegian medical student was a bit of a "stereotype". I remember one time a bunch of them showed up at one of the...

This has been a major issue here too for many many years now. And it wasn't just nurses but doctors too who also had a low salary. (It was a bit odd here though, since certain types of doctors could actually earn a lot, but illegally. Patients gave a lot of money in envelopes to surgeons...