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So they are obviously reading this thread. Why don't they just come here and ask us? They can see this is S4ME, it is full of patients and advocates, it is not some anti-ME headquarters. In this light, this is even more concerning.

The funny thing is that she is supposed to know me! We are Facebook friends, she added me a while ago. We even had some conversation about my advocacy and she asked me to translate her works to Hungarian (which I couldn't, there was too much on my plate already). (And I have the same photo on...

Communicating at the highest levels and yet:

MedPage Today: RECOVER Researchers Express Hope and Frustration in Their Study of Long COVID — Like "trying to build an airplane as it is rolling down the runway" An article about why NIH's long covid study, the RECOVER initiative is materializing so slowly: Koroshetz compared long COVID to...

Abstract Objective We conducted literature reviews to uncover differential effects of sex on sequelae from coronavirus disease 2019 (COVID-19) and on long COVID syndrome. Methods Two authors independently searched OvidSP in Embase, Medline, Biosis, and Derwent Drug File. Publications reporting...

Of course I don't know the whole context of the situation but I remember that the Austrian health minister, Wolfgang Mückstein (the one wearing the ME/CFS T-shirt in the photo) resigned a couple of months ago. The Austrian Health Minister Wolfgang Mückstein has announced his resignation less...

My sister (only sibling) has Hashimoto's thyroiditis and so do I. My mom has vitiligo, which is believed to be autoimmune. I had sudden viral onset. I started at the lower end of moderate, initially (in the first 2-3 years) improved a lot to very mild, then started to fluctuate.

There is a short article about the study. A key feature of the study is that most (75%) of the cohort were white educated women. "Even though we know Black Americans and Latinx individuals got very sick with COVID-19, we did not see them in the long haulers clinic," notes Chemali who emphasizes...

Abstract Objective: The investigators aimed to describe the clinical experience of a single center reporting on neuropsychiatric findings among patients experiencing persistent symptoms as part of post-acute sequelae of SARS-CoV-2 (PASC) infection. Methods: Data were collected retrospectively...

I'm currently on antibiotics too (badly inflamed wisdom tooth) and I've also become extremely tired and groggy and barely got out of bed because I needed to sleep so much. I can't decide if this fatigue was the result of the (at that time already disappearing) infection, the antibiotics (I've...

I also get that impression a bit. As for fit people: There are plenty of young, previously very athletic covid long haulers in my group who are literally going crazy right now because they can't return to their workouts due to PEM (clearly delayed PEM with a wide range of symptoms). They all...

A little bit too much EDS/hypermobility/MCAS/Dr Bolognese for my taste. For the record:

A longer, in-depth article about one of the upcoming studies in connection with long covid that got funding from the Hungarian Academy of Sciences. This one: - Effect of post-COVID-19 status on cerebral blood flow reactivity in physically active and inactive adults. Recognizing the role of...

Psychiatric Times: Neurological and Neuropsychiatric Complications of COVID-19 This is another article about the 2022 annual meeting of the American Psychiatric Association, this time about Avindra Nath's presentation: Nath explained that individuals who develop COVID-19 can be divided into 2...

They haven't listed any this time but from one of the previous papers we know that Pretorius is director of Biocode Technologies. Info from their website: Some people from the "Team" section (these people are not among the authors of the paper, I'm just trying to illustrate what the company...

I don't know how common it is but at least on Reddit a decent number of people seem to have it, based on these threads.

Just a quick question because I'm still writing my reply to that psychiatrist still promoting GET and CBT as evidenced treatments in Hungary: So what prompted rewriting the NICE guideline at the very beginning? Do we know that? I think somewhere I read in this forum that it was the controversy...

Probably for the same reason why brand new movies, often before their actual release have a rating of 9/10 on IMDB, then once widely released in cinemas, the rating drops to 6.3. Mysteries, mysteries everywhere. :angelic:

Psychiatric Times: Clearing the ‘Brain Fog’ in Long COVID A report from the 2022 American Psychiatric Association (APA) Annual Meeting. "Tiamson-Kassab explained that “brain fog” is a nonmedical term used to describe what patients feel in any condition that causes confusion, memory loss...

So my GP said that this probably means nothing but it was interesting at least to look at it. He also told me to get it checked again a year from now just to see how it changes. He says this may or may not have something to do with my symptoms but there is really no way to tell. He also added...