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@Kitty Well, they say they base this on follow-up studies. This is the description from the website of the university: Google translate: The description of the study on the website of the Academy when it was awarded the research grant (Google translate + me): (These are not what was posted...

I thought it might be worth starting a thread on what might be problematic or unethical with regards to recruiting people into studies. Especially but not exclusively in social media. What actually prompted me to do so was a psychologist who started to recruit people in a LC group I'm a member...

This is coming from the Heart and Vascular Centre of Semmelweis University here, who also produced this study perviously with some overlapping researchers: The associations of long-COVID symptoms, clinical characteristics and affective psychological constructs in a non-hospitalized cohort, 2022...

Abstract Introduction At the pandemic's beginning, significant concern has risen about the prevalence of myocardial involvement after SARS-CoV-2 infection. We assessed the cardiovascular burden of SARS-CoV-2 in a large cohort of athletes and identified factors that might affect the disease...

I don't want to exclude the possibility that the disease is more of a spectrum and that there may be people who for some reason don't have PEM but still suffer from this disease. However: the criteria where PEM is not required to have are simply too wide or inclusive and for example people with...

Sorry, couldn't resist:

Reading the opening chapter of Jennifer Lunden’s “American Breakdown: Our Ailing Nation, My Body’s Revolt, and the Nineteenth-Century Woman Who Brought Me Back to Life,” I recognized myself: a college student beset with debilitating fatigue and diagnosed with mononucleosis that was supposed to...

This is because they are like type A personalities with all these vigorous workouts they do all the time, being always on top of their game, competing constantly and just being elite athletes in general. And then they are suddenly ill a little bit, they cannot perform at the same high level all...

Full title: Clinical improvement of Long-COVID is associated with reduction in autoantibodies, lipids, and inflammation following therapeutic apheresis Abstract In the aftermath of the COVID-19 pandemic, we are witnessing an unprecedented wave of post-infectious complications. Most...

The OMF one accepts people from any country, so I signed up too, just in case. The Solve Registry is only for people living in the US but the website says they are planning an international one too.

Same here, it was mandatory to wear masks in all healthcare settings until just a few days ago but not anymore.

Personally I don't have a 100% reduction in my interferon gamma levels. It was 3465 pg/mL for me about 5 years into my disease (after EBV). There was no range or comment included for this value for me, just the number itself. But it is not zero in my case. They didn't measure IL-8 but IL-4 was...

Some quotes from the Twitter thread @Amw66 posted (from the same poster). A variation of this happens in my group too, although not on a large scale. And these people in my group definitely don't think "LC is unique", they actually believe these post-viral syndromes are the same or at least...

That's actually part of the reason why I am so hopeful about this. If they found some consistent biological difference with a BPS person like Walitt in such a role, it must be pretty solid. Maybe in the end it will be a BPS guy who wins the Nobel Prize for discovering the etiology of ME/CFS...

This gives me the strong impression that they did indeed find something then.

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...