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If anyone is interested: well, luckily I happened to have a bit better day, so I messaged Ádám Kósa about a week ago. I told him about the dire situation of Hungarian patients, that they get zero help from anyone and are basically locked out of healthcare, that education of ME/CFS at...

The ending is perfect too: Well, at least they got the pacing part right. But yeah, since this is what the NHS website says: I agree that as long as this is not accurate, there will be similar articles over and over in the media as many journalists will turn to the NHS for info, expecting...

I didn't have the bandwidth to watch the video but Cort Johnson has summarized it in a post if anyone's interested: Getting at the Heart of Post-Infectious Illnesses? Bruce Patterson Talks on Long COVID and ME/CFS/FM "On December 6th, InCellDx announced it hired a chief operating officer as...

Hm, I'm not sure. If you mean something like labyrinthitis, I've had it once and it was very different with a lot of constant spinning sensation and dizziness and nausea, which I never have with this. However, that was much much worse than these balance issues I have, so I can sympathize, that...

I do have that too. Not normally, not in my everyday life. However, I tried riding an electric scooter and also a bike and I realized I feel quite unsteady on them. Maybe OK in the middle of nowhere but it was way too dangerous for me in traffic. At that point I hadn't ridden a bike in a long...

I have a question: So I don't think I have OI, at least I feel fine upright and I really don't feel that it makes me worse in any way. However: I can have serious balance issues in the morning right after getting up and I'm not sure if this can still be a sign of OT or something else. What...

ABSTRACT There is limited literature on the cardiovascular manifestations of post-acute sequelae of SARS-CoV-2 infection (PASC). We aimed to describe the characteristics, diagnostic evaluations, and cardiac diagnoses in patients referred to a cardiovascular disease clinic designed for patients...

Hopefully it won't be turned into some sort of "long hauler campaigners are making it impossible for researchers to do their job, they are blocking science" kind of narrative.

Edit: on the CDC website: https://www.cdc.gov/me-cfs/programs/meetings.html#anchor_1635465043868

Thank you for letting me know, this is great! Currently I'm having a bit of a rough patch, so I had to take a break from letter writing a few weeks ago but I'm definitely adding him to the list of people to reach out to next. Thank you very much, @Michiel Tack !

To be honest, at least in the Hungarian LC groups I see many people who say anxiety and depression are part of their LC symptoms. However, they tend to say this has a biological basis (maybe neuropsychiatry is the right word here?) and is a direct biological result of their covid infection...

My ME brain read it as: Not that it makes much of a difference. :grumpy:

Nikita Vince-Cruz's publications have so far focused on treating people with depression with this method: https://www.pubfacts.com/author/Nikita+Vince-Cruz This is the short description I've found about her: Nikita Vince-CruzResearch Manager Niki received her bachelor of science degree from...

Checklist for my pre-ME days: - Positive thoughts :thumbup: - Optimistic attitude :thumbup: - Proper nutrition :thumbup: - Regular moderate intense physical activity :emoji_warning: Oh, OK, now I see how I ruined my whole life.

I haven't read it all but this part gave me a chuckle:

ME/CFS: The urgent need for improved generalist medical education ME/CFS is associated with verifiable pathology including autonomic dysfunction, reduced cerebral blood flow, increased immune system activation, and disordered hypothalamic-pituitary-adrenal function.(4) Current streams of...

So they are going to publish their results in early 2022. Looking forward to it because I have to increasingly deal with people in my FB group who already present this as the known mechanism and cure not only for long covid but ME/CFS. I have no problem with this direction of research though...

Only locally well-known people in this case but delta is seriously making the rounds here (we are at an all-time high of cases and recently we have been in the very top countries in terms of deaths per capita, sometimes occupying the number one spot). So today, a famous rock singer has died of...

I didn't know where to put this but wanted to share: These days I follow a few researchers and doctors who are very pro-vaccine and appear frequently in Hungarian media talking about covid. I'm also a member of a heavily moderated FB group where a group of doctors answer questions, mostly in...

I don't know, a "switch has been pressed" sounds like a good description for mine too. I mean it is indeed a bit like as if a switch got turned off when it starts and turned on when it ends (but maybe that's not what you meant). Tired is not a good word for me either. It feels very different...