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My glands are always swollen, though not as swollen as with the initial EBV infection when my neck was wider than my face. In the first couple of years, sometimes (once or twice a year) it changed which ones were swollen. Sometimes it was symmetric, sometimes not. The swelling hasn't changed in...

I'm exactly the same in every respect. I am very prone to sunstroke (and very rarely go outside if it's 30+ degrees and sunny, although now I wear huge summer hats to protect my head from direct sunlight because that is what seems to be the main issue for me). When I was younger, I had no idea...

Oh, good to know. As a youngish woman I got the AZ about two weeks ago. It wasn't ME/CFS that made me eligible but my non-existent hypothyroidism. It is non-existent because only my anti TPO is elevated, all my other values are within normal range and the whole thing was only discovered due to...

I hope so! A few weeks ago a reporter from the biggest TV station showed up in the long covid Facebook group, she was looking for material, people she could interview. I took the opportunity and sent her some of my articles, eg the summary of that great New York Times article about the long...

So, finally the official Hungarian guideline for post-covid syndrome has arrived. (Additional info: we have no ME/CFS guidelines, at least I couldn't find any.) And yes, my suspicion was spot-on, things are really dire. It's really long, very thorough and 90% of it is about damage to the lung...

Maybe, it is hard to tell. Google translate: To me it sounds like that once they don't find anything physical at the pediatric clinic's post-Covid clinic, then the kid is sent to the pediatric psychology clinic. From this sentence it sounds like the psychological clinic is not part of the...

And does that mean all of them are incorrect? This disease is known for being very diverse and it is difficult to find two patients who have the exact same experience. I believe just because someone doesn't experience one symptom or the same type of fluctuation, it doesn't mean it doesn't exist...

OK, my excitement about the possible attitude of the Hungarian post-Covid clinic was a bit too early. Since I posted here they have also shared their pediatric guide for GPs. And there I found a sentence that says if no organic change is found during the medical examinations, they will be sent...

According to the article, she was first diagnosed with ME/CFS but then later she found out that was a misdiagnosis and she actually had Ehlers-Danlos: Woman who would drop to the floor without warning waited three decades for a diagnosis...

Thanks! Oh no, anxiety, panic attacks, mental health?! I thought he described ME/CFS so very accurately in the interview! I'm glad he is back to normal though, that must feel great.

I remembered reading somewhere that heart problems should be ruled out before a diagnosis of POTS and wanted to look it up but then ended up on this POTS website, where I got distracted by the list of associated conditions. They included hypermobility and MCAS but not ME/CFS, how odd...

Ah, a researcher! Pardon for my ignorance :facepalm:

Thank you very much for sharing your experience, Florence! It's good to know that at least a few others have this atypical symptom too, whatever causes it. Yes, I know the feeling of suddenly having to buy a lot of new clothes due to the rapid change in size (then later having to buy smaller...

Is this Gwyneth Paltrow's Goop? OK, so I checked and it is. She is famous for often promoting and selling pseudoscientific healthcare products (Goop is the brand) and has been critized many times for this. I mean I am happy that ME/CFS and the possible link to long covid gets more attention...

This is an older video of Swedish tennis player Robin Söderling talking about his mononucleosis/glandular fever and lingering symptoms in English. He got GF in 2011 at the age of 26, and this video is from 2014. He hadn't played tennis for years and he officially announced his retirement about a...

I think from now on I'll call my problem persistent post-mono syndrome, aka long mono, maybe it'll help. :bag:

PS: By the way, we think you are a mental patient, dear long hauler. (sarcasm)

Vox article: Long Covid isn’t as unique as we thought Very long article in Vox about how ongoing post-viral symptoms are nothing new, mentions not only ME/CFS in detail but also post-Ebola syndrome, etc, and that not just infections can trigger such lingering symptoms. It also talks about how...

Japanese experts suspect neuroimmune disease causing pain, fatigue as COVID-19 aftereffect https://mainichi.jp/english/articles/20210310/p2a/00m/0sc/024000c "TOKYO -- Many coronavirus patients continue to feel fatigued after they no longer have the virus, so much so that it is difficult for...

Abstract Major clinical centers in Sweden have witnessed an inflow of patients with chronic symptoms following initial outpatient care for coronavirus disease-2019 (COVID-19) infection, suggestive of postural orthostatic tachycardia syndrome. This report presents the first case series of 3...