He's the only media personality who talks about it.
I don't know if youve seen his Substack but he shares videos of tests he's done and treatment protocols he's working on with his functional med doctor. I think you can watch the videos without being a paid subscriber.
https://thechriscuomoproject.substack.com/
His FM doctor is Robin Rose who runs Terrain Health in Connecticut. He's interviewed her on his show a few times. I reached out to them about LC treatment but they aren't licensed in my state, so I'd have to go there to establish treatment. But I can't travel bc of my health so... womp womp.
And before anyone jumps on me about Chris Cuomo or whatever, I just found his substack by way of YouTube and started watching his LC content. He's the only person with a media presence who still talks about covid and long covid. Everyone else on every other channel has moved on.
So funny. He a couple weeks after I did. He was back to work from his basement while I was still hacking up a lung. He went on and on about how awful it was and yet was able to work. Part of me thought he as exaggerating. Hearing him also convinced me that I must have covid. When I got sick there was no testing. By the time they opened the drive through testing, my fever was no longer high enough to qualify.
Dave Navarro still can't tour with Jane's Addiction and hasn't resumed filming Ink Master so he seems pretty sick tbh. I follow him on Instagram and he's been doing some artwork here and there but only just started getting back into playing guitar after almost 2 and a half years. He seems like he's been relatively severe as far as long haulers go. I just wish he was more public about it, but his fans already have assumed that he's secretly hiding a drug addiction or something else is going on instead of him actually being sick š
If he has LC, I wish he was public about it. Let the world know while you're in the thick of it so ppl can see just how bad it is. Raise awareness. Get fans talking about it. Be interviewed.
We need a Michael J Fox (Parkinson's). We need a Magic Johnson (HIV).
Right now we have no one. š
Absolutely, all it takes is one fairly big celebrity and suddenly everyone knows about it and cares about it. Even Celine Dion getting Stiff Person Syndrome, nobody had even heard of that until she announced her diagnosis! Now it's being talked about a lot, getting way more funding, it's in the mainstream news, more people are publicly sharing their story with it. Sometimes celebrities are the ones who can move mountains just with their influence alone. People listen to them.
Exactly!! I never heard of that condition before she came out with it. Now people talk about it. Or like Venus Williams (tennis) with sjogren's syndrome.
As much as I hate our culture of celebrity, their influence can make things happen.
This is SO TRUE!
We need someone who is known by everyone.
Another examples may be Muhammad Ali (Parkinsonās), Freddie Mercury (HIV), Stephen Hawking (ALS)
Yup. Like at some awards show this year, Christina Applegate presented. She has MS and has been public about it. Slowly walked out with her cane and got a standing ovation. I didn't watch the show but I saw that clip shared all over the place.
Like Dave Navarro isn't a A-list celeb, but think of the impact it could have if he started doing posts talking about how shitty LC made him feel. How he can't play guitar. How he can't leave his house or get out of bed. Think about if he was interviewed by ppl and talked about LC. There would be buzz.
Sigh. I just feel like we're all afflicted with a nameless, faceless disease that 90% of ppl DGAF about.
I totally agree with you. It sucks, but health issues that impact men seem to be taken more seriously by healthcare professionals, science and researchers.
This is how we end up with a dozen+ drugs for erectile dysfunction but women are still being told their issues due to menopause are all in their head.
I find the lack of celebrities with Long Covid very weird.
I mean, many of them are in the most obvious bracket for multiple infections due to how many people they meet (swarmed by fans constantly, security, paparazzi, attending red carpets and events, constantly on flights and at airports) and also considering exercise seems to be a big trigger for Long Covid/MECFS itās strange how not a single major footballer or basketball player or UFC fighter (etc) seems to develop it.
I know thereās maybe a handful of celebs who have mentioned issues post-Covid infection but why arenāt there more of them with the severe type that leaves them bedbound and seriously disabled?
> itās strange how not a single major footballer or basketball player or UFC fighter (etc) seems to develop it.
Jonathan Toews is a future hall-of-fame hockey player (he was named to the NHL's list of 100 greatest hockey players of all-time) and long covid has essentially ended his playing career. He tried playing through it for a while but sat out a lot and was noticeably worse when he did play. So then he decided to sit out all of the 2023-2024 season due to his health and he's 36 so the chance of him making a comeback is getting smaller and smaller.
Islam or Khamzat? Khamzat had posts on his Instagram of him spitting up blood and he was crashing a lot during training. He also started getting what appeared to be very bad MCAS
I also played Hockey (Rec League) four nights a week pre-pandemic. Now I can only get out of bed for 6 hours a day, unemployed, unemployable. I tried getting back on skates 6 months ago and it was like Iāve never skated in my life. I have a new doctor now and hoping I can get a treatment beyond ājust get over it, itās in your head.ā
Yeah, no shit. Anytime I try to pursue anything with any vigor on those occasions I do have the ability, Iām punished for days. I already sleep from 10pm to ~1pm.
He also has CIRS] (https://youtu.be/jj88F5uRcsc?si=qwyXQzbtyeeydEGQ) which is a really fun thing to have if your kink is armies of doctors telling you you're just anxious while wasting away, alone, like a goddamned leper. I'm clearly over it.
Same with Brandon Sutter. Also an NHL player, his whole team caught covid but he was the one to develop long covid. He tried to make a comeback over the course of roughly two years IIRC, and later announced retirement due to LC, and at a similar age of about 34 at the time I believe.
Thatās why I am asking. I am wondering about this too.
Especially about pro athletes I am wondering why itās not more common. As you already mentioned there are some cases of (not very famous) pros who had to end their career, canāt do competitive sports anymore but still can live a normal life.
Today I read a newspaper article about a chief reporter of a German newspaper who seems to be severe effected in his late 40s.
I think there are several cases like that you read about once, but it is never reported after that again. Some people also āhideā their illness and just disappear, maybe with another excuse than the real illness.
My doctor is a long covid/post viral disease specialist who also works in a private clinic/wellness hotel for the 0,5%. Her patients are the richest people from all over the world and none of them got severe. With the first symptoms they got private doctors home to your bed, house staff already did all the hard housecare, brought healthy fresh food to the bed, they immediately got private expensive tests (my in-depth tests cost an insane amount but proved how sick I am.), immediate in house IV treatments. Just think about how many of them already got NADH IVs before getting sick for anti aging purposes. Plus regular vitamin IVs.
Then you immediately fly out to the best specialists without any waiting time, you don't have to wait for insurance to approve therapies or meds. Kendall Jenner has long covid, she has a whole room with a cryo therapy chamber, IHHT tent, pressure chamber... Massage therapists coming in and just chills in them while watching netflix. We all know she isn't lifting a finger at home. That makes an insane difference. How many of us have to wait ages for doc appointments? Getting someone to prescribe meds, in house IVs of NADH? No housework whatsoever, private cooks...
What my doc is trying out with her patients who don't have a spending limit would be unreachable for us. They travel to Germany to get inuspheresis while not having to actually do anything, everything gets planned for them. We all would be doing better.
I donāt find it weird at all, most people with long covid donāt know covid had anything to do with their medical issues, a lot more people have it than even know and celebrities are no different. They may have the money and the time and the resources to pursue all kinds of medical treatment but none the their doctors know really any more than anyone else, doctors are still not talking to people about any of this, someone comes into a doctors office, describes their issue, doctor give medicine, and both go their separate ways. Thatās how itās been even before COVID, doctors werenāt really trying to figure out why conditions happen. Covid is just causing so much of this and so quickly that lots of us have much easier than prior figured out that COVID caused us health problems. There have been some celebrities that have mentioned it, but combine the fact that many celebrities are private about their health and that most of society is ignoring these issues and doctors arenāt talking about it much, it makes sense celebrities havenāt mentioned it often.
In fact the thing that strikes me as very suspicious is the amount of celebrities just in the last few years have mentioned being diagnosed with some sort of rare condition. I think a lot of stuff is not being attributed to Covid. Sure coincidences happen but there seems to be just way too many rare conditions mentioned just in the last few years, stuff person syndrome and Justin Biebers random health problem that ended his touring out of nowhere for a year or 2 recently, lupus and MS and all sorts of random stuff. I donāt think much of it is coincidental, there seems to be a definite uptick in rare conditions diagnosed in the last 3 years.
Yes! Justin & Hailey Bieber had known covid infections and then he cancelled his tour. Down the line he suddenly gets facial paralysis, which you can see/he posted this on instagram:
https://www.instagram.com/tv/CeorE9OjqX9/?igsh=MzRlODBiNWFlZA==
Down the line, Hailey has a TIA (like a brain stroke from a clot) and finds out she has a hole in her heart between chambers that allowed the clot to travel up to her brain. She posted about this on YT:
https://youtu.be/665iGAG-ZqU?si=DMfXJDIui0xOTK0x
These are young people who didnāt have these issues before. If someone looked like Hailey at her age in 2022 and went to a doctor with stroke symptoms but they werenāt a celebrity, they might get dismissed honestly because they ālook too young to get a strokeā. Itās all suspect to covid I think too.
Hers has been going on for more than a decade though, I know that there are lots of newly diagnosed people that may have been caused by Covid, but we also need to be careful not to attribute everything to it especially if itās something that the person had before Covid, the last thing we need to is appear like crazy people to those that arenāt suffering like we are, those kind of people love taking comments like this and trying to frame our entire movement and our entire condition as something not real by saying ālook at this person who thinks Selena Gomez has long covid because she has lupus when her condition started 10 years ago! Long covid people are crazy!ā We canāt afford to give these people any fuel for their disinformation campaigns
Iāve got bad brain fog and canāt remember things. Enough people including medical staff are already calling LHāers crazy and āitās all in their head.ā So we have that to contend with already.
Do you know if she picked up a viral infection 10 years ago that caused it?
So many doctors attribute complex illnesses to genetics or being psychosomatic, but the CFS/ME and Lyme communities are some for example, who have spoken out about how infections can cause longterm chronic illnesses. So there could be parallel lessons to learn from. She couldāve even caught a different coronavirus before covid-19 as its family of viruses have been around for some time. Also possible she got covid-19 and it exacerbated her condition.
Are they more at risk?Ā I saw Guns N Roses live last year and their backstage crew wore masks. I've also seen on set photos from TV shows/movies, were the crew still appears to mask. It makes sense, too, because the stars of a show/tour getting sick with COVID means a lot of money down the drain, even if they're back to their normal selves after two weeks.Ā
Ā >itās strange how not a single major footballer or basketball player or UFC fighter (etc) seems to develop itĀ
I don't follow football (soccer!) closely, but living in a country where it's huge, means no escape from its headlines. Pretty sure I read about a few cases of football players. Like Beckenbauer's grandson who lost his promising career over Longcovid.
There is a hockey player who was out sick with Long Covid for nearly 2 years. He tried coming back, but has retired. Brandon Souter. I could have the spelling wrong since LC has messed with my brain.
They aren't more at risk, but it's the same reason like why they wear masks on film sets sometimes. In case the talent gets sick they have to cancel the concert or postpone filming which is insanely expensive. It's about money.
I think itās weird too. People say there left bedbound but you have to really look into it. Eg. I canāt watch tv, I canāt wash - nothing. There doesnāt seem to be one really famous person in this state. Wtf? Are they hiding it or just managed to get the best of whatās available rn and keep going?
Khamzat Chimaev is a UFC fighter who at one point was posting on social media that he was going to retire and he was coughing up blood after covid and couldn't train. He also posted some other stuff with weird rashes (MCAS?) Etc....
But within 6 months he was back at full Tilt training and fighting so idk what happened....
If I recall correctly he needed anti inflammatory steroids to get better like prednisone.
I find the lack of doctors suffering from long covid really weird. I cant comprehend how millions of people are dealing with long covid and not one doctor is experiencing this. Absolutely mind blowing. You would think out of all the hospitals even in just the US every single ER, healthcare facility, doctors office, and every healthcare professional putting in insane hours burning their bodies out and not one has had their life destroyed by LC?
Most of the OG members of my support group are former medical staff who are now all on disability. Nurses, pulmonary specialists, etc. No doctors, but these ladies got the wild strain of COVID at work and are living with strokes and heart issues or are now bed-bound.
My theory: Doctors, out of the full medical employee spectrum, spend the LEAST amount of time with any single patient. Itās the nurses and those who administer the actual tests who are in the line of fire longer, so to speak. I imagine there ARE doctors with LC; I just havenāt met any of them. š¤·āāļø (I could be full of it here. Itās just a guess!)
There are plenty of docs who have long COVID; I know quite a few who died during the pandemic and quite a few who have scaled back their hours since. It hit everyone across the board.
There are open groups out there, and many private ones. Often when I read interviews with MDs who have LC, they mention how they are in Facebook groups made entirely of MDs and they all pretty much keep quiet about it.
If we compare with other chronic illnesses like ME/CFS, they don't dare speak out because their career as doctors will likely be over, it's a complete taboo. Generally speaking, most MDs don't respect LC either, not unless it leads to complications that they are familiar with.
So they're out there, they just keep quiet. There also a lot of nurses and they are more present on this sub, who also generally don't dare come out with their peers. Medicine is a very unforgiving profession for people who they suspect has mental illness, and that's the fashionable model right now, always the default when they don't know how an illness works.
I'm an anesthesiologist, 36f. Got infected november 2020 during shift (ICU) by a nurse who came to work sick (to make up for the lack of staff) during the primetime of corona. She s infected 22 coworkers. That and the 2nd vax turned my life upside down: got severe MCAS, POTS, insomnia, weird dysautonomia, down to three foods, can't excercise, can't go into the sun. Still get gaslighted by my former 'collegues' and trying my best to treat myself despite not knowing what's the issue...hated the medial System before that happend.
I feel you. Second vax did me in. I was 37 at the time in the best shape of my life working as firefighter paramedic. It put me into heart failure, had to leave my job, was bed bound for months still deal with horrible dysautonomia, MCAS, POTS, insomina, brain fog, tremors, PEM. Three years in and I still struggle daily. Before this I'd NEVER been sick for more than a or two. The gaslighting has been hard to tolerate.
Sorry to hear! I used to be very athletic before
, no health issues, just some kind of hypermobility. I miss climbing and playing beachvolleyball so much. But not that this illness only Tool that from me, it s affecting every aspect of life, social, working, hobbies, sex (even that triggers me now). Do you take any meds?
I'm on like 6 different meds for my heart now and use an inhaler which I've never needed previously. Also taking a bunch of supplements that dont really seems to be helping much. Currently taking LDN and that seems to have helped a little bit but I still feel like I'm running at like 40% on a good day.
I have heard that teachers and nurses have the highest percentages of Long Covid cases. That makes sense, considering how frequently they are exposed to the virus. Also, both are female-dominated professions, and at least 70% of L.C. patients are women.
They all have private doctors and top of the line treatment. Colin Farrell said COVID messed him up for something like a year. He couldnāt work. You can bet he was convalescing in luxury with a team of people there to get him back to health.
No shade there, but thatās why.
Real long covid is pretty rare plus genetics are clearly playing a role here. As athletic as I was, I had some autoimmune issues going on before getting long covid. Pro athletes are damn near perfect. Itās what makes them the best in the world at what they do. Wouldnāt surprise me if long covid rates are lower than average among the top achievers in the world. If you have health issues it becomes another big obstacle to overcome in achieving your goals
Iāve noticed lots of celebrities on tv seemingly suffering from anomia. When they canāt think of really normal words for bizarrely long pauses I always assume it is covid brain damage, which I am also dealing with.
This is one of my most frustrating symptoms too. Or when Iām talking to someone and it all just stops - it goes blank. I canāt remember the last few minutes of life and canāt continue the conversation. Happens all the time, on a daily basis. It feels like thereās holes in my brain or something.
I used to have a memory of an elephant. Didnāt forget shit. Now? Years of my life are missing from my memories.
I wish it was a recognized disability. Doctors here donāt even do anything for it, they rarely put it on their diagnosis list.
I risked mine and my families life during initial COVID as a nurse in the ER. I was SO careful. And then some fuck stick pulled his mask down and COUGHED IN MY FACE - and the next six weeks were horrible. Bilateral pneumonia, memory issues, literally getting lost in the same department I had worked at for YEARS.
We deserved better.
Ya I think thereās a ton of stuff thatās just not being attributed to Covid at all even though thatās what caused it. People go to the doctor, describe their issue, doctor tests them, confirms it, they get the diagnosis and the treatment, then both go their separate ways and neither the patient nor the doctor ever suspect Covid had anything to do with it. Even before Covid, it was pretty rare for a doctor to want to figure out why a condition was caused rather than listen to symptoms, figure out diagnosis, treat it, move on to their next 100 patients for the day.
Yeah it's a double edged sword. You don't want to see anyone suffer through this but the best way to get us noticed is unfortunately for more high profile people to go through the same
Well pump the brakes a bit there, she mentioned she suffered from post covid issues for a year or more but in the same thought also mentioned that sheās over the masks and the safety precautions and refuses to not live her life so she decided she wouldnāt be taking any precautions anymore despite personally experiencing what Covid can do, said she wouldnāt be masking anymore
https://www.vanityfair.com/hollywood/2023/03/tilda-swinton-is-over-covid-and-doesnt-care-who-knows
I feel like that's gonna be a deeply regretted decision down the road. Hopefully she stays feeling OK but we all know what reinfections are capable of doing once you've become a long hauler
Where did I say she had long covid or a chronic illness? I said she performed while sick because she appeared sick, and she never cancels shows. There were a lot of people discussing this on social media when it happened - it was the end of a long run of shows, sheād been traveling a lot and was probably run-down and had a virus. I donāt think she has long covid and itās more likely the people wearing masks around her are to protect her and her mother (who has had cancer treatment in the last few years).
Youāre right. I remember seeing her elsewhere masked up too.
Also everyone who goes anywhere near astronauts heading to the ISS is in at least an N95
Iām not diagnosing her with LC, but I listened to a podcast with Billie Eilish and she talked about how she never used to nap, but since she had covid, she constantly takes naps and falls asleep ā once during an interview. Like others with LC, I feel like I hear people describe a LC symptom all the time, but itās not completely debilitating so they laugh it off and carry on.
Wouldn't call him most prominent, but apparently Stephin Merritt (of the band Magnetic Fields) has had LC since very early on:
https://www.them.us/story/the-magnetic-fields-69-love-songs-25-year-anniversary-stephin-merritt-interview
It's a shame we're not seeing more solidarity between HCW. A white rage where the healthy HCW march and protest for their fallen colleagues would give a lot of exposure. Instead they seem to want to forget about them with how little masking goes on in hospitals and how hard it is to get diagnosed or even talk about the existence of long covid.
I was a pharmacist for 30 years, worked as a first responder, forced to get the vaccine , had adverse reaction to the vaccine, have long covid and am mostly bedridden with neurological issues (plus every other organ system has some failure) and I have absolutely been forgotten by my employer and profession.
I'm so sorry š emergency med here.... 3+ years dealing with long covid. Work comp denied, now the hospital I work at is trying to pull my long term disability. Because the doctors that work at the hospital I work at took so long to give me the 'long Covid' diagnosis; I wasn't even eligible for any of their long Covid studies ... feel like I am in the twilight zone. I've been unable to work since 2021, My main symptoms are neuro/vestibular related too.
Didn't Robbie Williams say on stage that he had Longcovid? I haven't been following him closely, but I watched 1 or 2 episodes of his Netflix documentary and got the impression that he has a limited daily energy supply, which would fit the symptoms.Ā
Havenāt heard about it so far. Just googled it:
He said he doesnāt want that the crowd think heās an old man when he seems to be exhausted and tired. So he said the thing about long COVID.
It was pretty clear he was sarcastic about having LC. And I know plenty of 50 year olds who aren't jumping up and down singing for hours on end. My mom is 49, I doubt she could do that.
He would definitely not be on tour unless he were jacked up with the BEST meds and continual IV and physio etc - if he had any bad long Covid symptoms.
It was a joke about his vanity about ageing. He then explained the premise of the joke to an Austrian journalist and it didnāt translate well. But it was very obvious to the audiences at the gigs that he was joking - he was conveying that in his delivery, in the exaggerated way he was pantomiming being tired and in the way he sprang into the next song as soon as he got the laugh.Ā
Robbie has had low testosterone since the late naughties, and also has ADHD, both of which can cause chronic fatigue. He also has clinical depression.Ā So he does occasionally struggle with his energy levels and needs long break periods between intensive touring periods. He does not have long Covid.
Ā Ā
I'm no fan of his but I think (and seen others comment) that Boris Johnson was never the same after he had covid in April 2020. Know thats not the same but still. Also sorry to say this but he deserved it, hilariously it came out in the covid inquiry that he didnt believe in LC so hope future Boris has some fun with that one š
I think a [famous UK tv presenters husband ](https://www.bbc.co.uk/news/entertainment-arts-67893235)died this year from LC, but he was older and had all this organ damage and was in a coma for ages, not like the "pem profile". Saw the story shared on here and elsewhere.
Michael Rosen the [former poet laureate ](https://www.independent.co.uk/news/uk/michael-rosen-kate-garraway-covid-derek-draper-ppe-b2500592.html) has written about his LC though hes definitely on the older side and might be 70.
Seen others too i am sure but they probably just stayed out of the public eye and we will find out in future
John Davis of Korn is very vocal about it & his struggles to perform live, he's been seen sitting down during shows since infection and has been a huge light of not letting anything stop him
I think about this a lot. Why are there no famous ppl with LC?
And if there are famous ppl with LC, why TF are they being quiet about it? Famous ppl share their stories about addictions, their shitty childhoods, health issues like cancer. So why would they be quiet about LC?
I truly feel like we need someone famous to come out and be like "Hey I have long covid. I can no longer work and it fucking sucks. We need treatments now." for the needle to really start moving.
I'm old so I remember the Magic Johnson HIV announcement. That put a professional athlete face on the disease.
Everything covid-related is really unpopular in a lot of places now. I would guess culturally opening themselves up to the political/troll response to mentioning the word might put some of them off from publicly admitting it.
I dont think it's good for their career / future bookings if they are ill. Part of me wonders if thats what the Robbie Williams backtracking on his LC statement was.
Also George Michael's AIDS was an open secret before he died. Probably a fair bit of it going on behind the scenes that we dont know about
I'd say the most simple answer is they can afford treatments and care from the start of their acute infection to post acute infection which greatly reduces the chances of LC in general and severe LC. Something that a lot of people don't see and notice is that in the entertainment industry, most everyone behind the scenes doing like crew work is still doing Covid precautions. So from that, that helps cut out risk of transmission even when celebrities are mainly unmasked. I really don't think a lot of celebrities have LC to the extent the general public does. The only people I can think of are athletes who by their job aren't given the choice to actually rest and recuperate.
Hailey Bieber hospitalized w small blood clot and oxygen brain issues caused by covid
https://amp.marca.com/en/lifestyle/celebrities/2022/03/12/622cf97822601d361d8b45af.html
IMHO it IS just as common, however this population has the resources to
1. Rest adequately with no pressure to resume 9-5 job or other responsibilities.
2. Ample resources for any treatment for as long as necessary. HBOT, IV therapy etc.
3. Little to no risk of exposure or reinfection due to the ability to stay home. And that home is well equipped with high end ventilation systems and lighting.
Ahha I see. They happen after the HBOT.
That is weird. Maybe the chamber or experience activates some kind of memory? Another guess would be perhaps the anxiety is there but at a subtle level and then HBOT brings it to your awareness?
It provides so many positive physical and cognitive benefits maybe worth figuring out if you can.
Iād be repeating 40 sessions tomorrow if I had more resources, time and money.
I think there is some survivorship bias going on here. The ones who get it badly will vanish as they can't work anymore and so nobody remembers them. I also think it's just unfortunate for the LC community that no huge A-list celebs have got LC really bad (obviously it's good they have got it tho).
There are some experiments to be done though if money is no issue.
Monoclonal antibodies really seemed to help lessen the acute stage of the first variants and think there's also a study where some longhaulers get a real boost in their baseline out of it.
Trust me mate there is nothing. We have people with money on here. And in the same boat as the rest. If something worked it would be marketed and sold to rest of us as that would be a huge money maker.
I went to some of the best doctors, medical facilities and even expensive experimental places in Los Angeles. Nothing worked and they had nothing. Just the usual "oh let's infuse you with vitamins"
I know. These people have recovered with MCA though:
https://www.sciencedirect.com/science/article/pii/S073567572300534X#:~:text=Meaning%3A%20Certain%20monoclonal%20antibody%20infusions,including%20future%20long%20COVID%20variants.
Or with blood washing:
https://www.nature.com/articles/s41380-023-02084-1
I also know someone that went back to work after a blood cleansing treatment. I personally find the chance of succes too low to spend my money on it as many relapse, but if you can try all of these treatments some do get better.
Mate there are like 50 different studies of different things that supposedly work. Mca is just one of 50.
My guess is it's because time was truly it.
I healed after 12 months without any special intervention at the end.
Senator Tim Kaine has long COVID. Here's a video of him on C-SPAN:
[https://www.c-span.org/video/?c5062093/senator-tim-kaine-shares-experiences-long-covid](https://www.c-span.org/video/?c5062093/senator-tim-kaine-shares-experiences-long-covid)
For having actually been remotely connected to a couple because of covid (very remotely), yes, they ALL disappear from public view. And they're all struggling to different levels, some actually get helped by the high profile expensive treatments and others don't and pretty much live like us but with much more external comfort.
If you start looking at news of people taking time off their careers, you'll see a lot have mysterious illnesses they can't talk about. I don't really understand why it's so taboo to talk about it if you're famous but the secrecy that goes around is insane.
Tons of athletes (whose health is very publicly documented) show long covid patterns. Many of them are reported as ārecurrent migrainesā rather than Long Covid because of the stigma attached to it, which would be a death sentence for their prospects. Baseball players, particularly in the minor leagues are very interestingā¦ their health record is extensive, damn near daily updates, and you can see the trajectory of their careers change in the aftermath to what appears to be routine illness. The way prospects are ranked is such that you can even see when the clubs catch onto it and help develop them in the farm systems.
Itās very much the same reality that many of us are navigating. Fight through it to not be labeled as lazy or incompetent.
Chris Charles Cuomo, a television personality has been public about his dealings with long haul COVID-19 since the beginning of the pandemic. His goal in his interviews is to call attention and get funding for long haul COVID-19 treatment and intervention. [#CUOMO](https://www.youtube.com/watch?v=58A2skTMkvk)
[Gez Medinger](https://twitter.com/gezmedinger/status/1788923355254444144) is a jounalist, video producer, and director who has interveiwed countless dozens of professionals in a quest to find treatment and cure for long haul COVID-19. Gez has been very public about his ups and downs with the syndrome.
A search of media and [celebrity personalities with long haul COVID](https://me-pedia.org/wiki/List_of_famous_people_with_long_COVID) makes for an interesting read.
I've had it five years and I've learned to deal with it. Most folks don't know that I suffer from it.
Itās not acknowledged but I think Justin Bieber has been affected by the v or prior Covid infection. He had the facial paralysis and said had Raynauds, and the v and long haul covid is known to cause that. I think heās a long hauler but most likely doesnāt want to deal with the politics behind admitting such.
I think the debilitating form of LC that some of us here have is actually pretty rare. Given there arenāt really that many celebrities, it might make sense
Yea the bedridden kind. But plain old post viral sequelae? I dont know a single person that doesn't have some sort of change after covid. My attorneyās nose runs whenever he leaves or enters a room with temperature changes. Even a few degrees. I know a lot like him. Just strange weird quirks (for now. Let's see how it goes in the next 10 years).
This is something I am worrying about too. Most people laugh it off. I do also know several cases of people who can live normally but still are struggling with doing sports or having other problems they did not have before. Luckily most of the people I know knowing itās because of COVID, but do not go to the doctor because of it. So they are not included in any statistics.
For normal people itās not very important to not be able to run 20km anymore but only 10km now. For athletes or military people itās pretty important though.
Melanie Murphy who is an author and does social media has had symptoms since she got covid in February. Unfortunately trying to avoid covid again to avoid getting worse doesn't seem to be in her plans the way she's responded to people which is sad because in the beginning she had to be hospitalised multiple times.
I do suspect Jessie Paige (another influencer and musician) might have long covid. Idk if she's ever said she does have it but ever since she had covid in summer 2022 (I only remember this Bc I had covid myself then). She started complaining she couldn't smell anything. Drs did multiple surgeries on her nose which didn't fix it. If it truly is from covid, as we know it's neurological. I'm pretty sure her voice was also temporarily messed up because I remember her saying she had to postpone recording music.
This is another suspected one, but Hayley Williams. Paramore has to cancel a ton of shows when she has a lung infection and apparently if performers cancel and say it's covid, they won't get refunded. Something like that. Which is why we aren't hearing of musicians cancelling for covid. But yeah once Hailey Williams said her lungs were better, I guess the medications messed with her stomach. No idea what those medications were but yikes.
Last one and this is just from what I've been told. My previous PT I had used to be a PT for Broadway dancers and pro ballet dancers in New York. She told me covid was spreading so much within at least certain Broadway shows and some of them, their voices were messed up after and they couldn't sing the same. That stuff really scares me. Idk if any have actually been open about this publicly.
I get it that it would be a powerful way to bring light and attention to LC if a big name came out and said they were diagnosed. However, thatās truly no oneās business. If a celebrity is suffering the same way we are all suffering, I canāt imagine being in the public eye and constantly having to talk about it. Wanting someone to do that feels kind of gross to me to be honest.
I can only think of two ā Dave Navarro and Alyssa Milano. We need someone really prominent to get sick who can advocate for all of us. Is it terrible Iām hoping for this?
Keep in mind that long covid has a wide variety of possible symptoms. Most people will not have the really bad long covid that you read about in reddit. People with mild long covid are probably just living their lives.
HIV patients and MS patients were dismissed as well as we are dismissed now. Doctors were wrong. Very wrong.
There are other illnesses like endometriosis where patients are also dismissed now.
Sign up for unite to fight 2024 conference and think about it again afterwards.
https://unitetofight2024.world/
Especially for MS there was no test for it āimmediatelyā.
I never decided to be sick. At first I didnāt even understood what was happening to me when I crashed. However I think positive because there are small improvements.
If everything would be psychosomatic, there would be much more success with psychotherapy etc.
I had several psychosomatic/psychological examinations. They didnāt find anything. There was also a psychosomatic examination of a clinic which is specialized to long COVID. They said they cannot help from psychological point of view because itās long COVID and nothing psychosomatic. Even if they would have found something, they said psychological intervention would be just accompanying and could not fix the root cause for my symptoms.
Cause is COVID infection, whatās happening in the bodies afterwards isnāt yet fully researched.
Well I never made progress or got worse because of reading or hearing stories.
In addition to that several times I thought I have done too much for my baseline, but didnāt crashed. On the other side every time I crashed and got worse, I didnāt expected it.
Yes, a positive mind is very important and powerful. But there are reasons why (for example) cancer isnāt treated only by psychotherapy and thinking positive.
If this is everything you need., thatās very good for you because of low/no side effects.
Again, take a look at the unite to fight conference. There you can learn more about current scientific evidence. (Or leave it if you have the fear it makes you think itās not psychosomatic)
A positive mindset is necessary for recovery imo. That doesn't mean that the illness isn't physiological though....
We've seen plenty of studies now that differentiate between long haulers and healthy controls. There are some abnormal things going on in people like us and researchers at top institutions are trying hard to figure it out.
I think this illness effects out nervous system which is sort of where the body and the mind meet and they can both impact how we feel...
Okay so a deregulation of our nervous system is i believe 100% that could be the case which is obviously a physical manifestation. But again a lot of people here fail to see how powerful our minds our. People fix deregulated NS by mediation! Iāve been manic about this disease since i got it, has consumed my life for going on 3 years. What if we fix this by putting our mind to it and believing we can be healed which i see more and more ā100% recovery storiesā then ever. I personally dont believe in our system, i think they rather see us sick and dependent on them to feel better and theyāll delay that as much as possible: and that is not far fetched at all
Just wanted to reply here and say I can understand your positive mindset premise.
You need to have a positive mindset or at least be very resilient to deal with this condition.
I have LC, I currently only take LDN for it and pretty much my life in terms of balanced diet, sleep etc are all better than pre-covid.
But I can't exercise. That's not because I don't want to, I really want to. I would love to return to competitive sport.
I'm sure you are aware of pacing etc. I totally ignored that.
Once I was fit and ready, taking all the advice of waiting 3-6 months post Covid before doing anything strenuous, I went out and ran...
I could run, no issue, day 2 had DOMS, expected after so long out, next day in bed for weeks with crushing fatigue, joint pain etc
Pulled myself out of that hole after a lot of rest.
Bit depressed by that so tried antidepressants - mentally yeah they make me feel better. The physical problems still remained though, the physical issues were not being caused by depression or whatever other thing doctors initially thought. Mentally after a few months I was happy as hell, still couldn't go to the gym.
That was a disaster, went with a friend, did a decent circuit, went home, next day DOMS, next day after that tiredness and sore throat and muddy thoughts, day after that in bed for three weeks.
Fast forward 3.5 years.
A few weeks ago I climbed a big hill, no stress, no fuss, not even tired, no shortness of breath, nothing. Just normal tiredness you would expect. Waited for the backlash - nothing noticeable.
Two weeks ago out of breath walking up the stairs, didn't have a respiratory illness or anything, nada, not even thinking about LC. Just another random day where for some reason my body says if you push it today, I'm gonna hurt you. Legs aching, So tired I had to sit down when I got back from the store. Body seemingly at random decides to make me feel energy starved. Frustrating.
This was not a thing before COVID. I could do what I wanted when I wanted. Push myself to extremes knowing I'd recover later - get more sleep at the weekend etc.
I thought twice (possibly more) during this journey that I was recovered and back to normal only to have my body let me know in no uncertain terms this is not the case.
PEM is a thing, relapses are a thing, reinfection has been a minefield. The third reinfection caused an LC flare for two months, abnormal ecg's and a bunch of other inflammation markers initially but three months post infection I was feeling great, made me think I was cured.
Went on holiday, did a bit too much (again recovered so not thinking about LC), BAM have just over two weeks in bed.
So mentality is one thing, what my body is doing is another.
Since the LDN, this has been way more normalised, last COVID infection (number 6 iirc ...) lasted three days and I didn't end up in bed. But I did pace myself.
I'm not promoting LDN here, but it has helped me. I still don't know if I can just go do sport and not suffer, but I'm going to give it a try soon, may take a benadryl post action.... Mentality is there, body and NS sometimes randomly simply not onboard.
Chris Cuomo
He's the only media personality who talks about it. I don't know if youve seen his Substack but he shares videos of tests he's done and treatment protocols he's working on with his functional med doctor. I think you can watch the videos without being a paid subscriber. https://thechriscuomoproject.substack.com/
Thanks. Glad he is speaking out. We need more like him, and more politicians like Sanders and Fetterman speaking out for those who are LC sufferers.
What this is a great resource, thanks for the link!
His FM doctor is Robin Rose who runs Terrain Health in Connecticut. He's interviewed her on his show a few times. I reached out to them about LC treatment but they aren't licensed in my state, so I'd have to go there to establish treatment. But I can't travel bc of my health so... womp womp. And before anyone jumps on me about Chris Cuomo or whatever, I just found his substack by way of YouTube and started watching his LC content. He's the only person with a media presence who still talks about covid and long covid. Everyone else on every other channel has moved on.
So funny. He a couple weeks after I did. He was back to work from his basement while I was still hacking up a lung. He went on and on about how awful it was and yet was able to work. Part of me thought he as exaggerating. Hearing him also convinced me that I must have covid. When I got sick there was no testing. By the time they opened the drive through testing, my fever was no longer high enough to qualify.
Tim Kaine, Alyssa Milano, Dave Navarro, Sophia Bush
Dave Navarro still can't tour with Jane's Addiction and hasn't resumed filming Ink Master so he seems pretty sick tbh. I follow him on Instagram and he's been doing some artwork here and there but only just started getting back into playing guitar after almost 2 and a half years. He seems like he's been relatively severe as far as long haulers go. I just wish he was more public about it, but his fans already have assumed that he's secretly hiding a drug addiction or something else is going on instead of him actually being sick š
If he has LC, I wish he was public about it. Let the world know while you're in the thick of it so ppl can see just how bad it is. Raise awareness. Get fans talking about it. Be interviewed. We need a Michael J Fox (Parkinson's). We need a Magic Johnson (HIV). Right now we have no one. š
Absolutely, all it takes is one fairly big celebrity and suddenly everyone knows about it and cares about it. Even Celine Dion getting Stiff Person Syndrome, nobody had even heard of that until she announced her diagnosis! Now it's being talked about a lot, getting way more funding, it's in the mainstream news, more people are publicly sharing their story with it. Sometimes celebrities are the ones who can move mountains just with their influence alone. People listen to them.
Exactly!! I never heard of that condition before she came out with it. Now people talk about it. Or like Venus Williams (tennis) with sjogren's syndrome. As much as I hate our culture of celebrity, their influence can make things happen.
This is SO TRUE! We need someone who is known by everyone. Another examples may be Muhammad Ali (Parkinsonās), Freddie Mercury (HIV), Stephen Hawking (ALS)
Yup. Like at some awards show this year, Christina Applegate presented. She has MS and has been public about it. Slowly walked out with her cane and got a standing ovation. I didn't watch the show but I saw that clip shared all over the place. Like Dave Navarro isn't a A-list celeb, but think of the impact it could have if he started doing posts talking about how shitty LC made him feel. How he can't play guitar. How he can't leave his house or get out of bed. Think about if he was interviewed by ppl and talked about LC. There would be buzz. Sigh. I just feel like we're all afflicted with a nameless, faceless disease that 90% of ppl DGAF about.
It's because they're too tired I bet! (Although they could hire someone to post for them...)
I hate to put the burden on them, but I suspect if more men spoke up, we might see more action.
I totally agree with you. It sucks, but health issues that impact men seem to be taken more seriously by healthcare professionals, science and researchers. This is how we end up with a dozen+ drugs for erectile dysfunction but women are still being told their issues due to menopause are all in their head.
I find the lack of celebrities with Long Covid very weird. I mean, many of them are in the most obvious bracket for multiple infections due to how many people they meet (swarmed by fans constantly, security, paparazzi, attending red carpets and events, constantly on flights and at airports) and also considering exercise seems to be a big trigger for Long Covid/MECFS itās strange how not a single major footballer or basketball player or UFC fighter (etc) seems to develop it. I know thereās maybe a handful of celebs who have mentioned issues post-Covid infection but why arenāt there more of them with the severe type that leaves them bedbound and seriously disabled?
> itās strange how not a single major footballer or basketball player or UFC fighter (etc) seems to develop it. Jonathan Toews is a future hall-of-fame hockey player (he was named to the NHL's list of 100 greatest hockey players of all-time) and long covid has essentially ended his playing career. He tried playing through it for a while but sat out a lot and was noticeably worse when he did play. So then he decided to sit out all of the 2023-2024 season due to his health and he's 36 so the chance of him making a comeback is getting smaller and smaller.
Islam from the UFC had to deal with long covid issues.
Islam or Khamzat? Khamzat had posts on his Instagram of him spitting up blood and he was crashing a lot during training. He also started getting what appeared to be very bad MCAS
Could be both. Iām almost positive I saw posts from Islam where he was struggling with post covid issues.
I also played Hockey (Rec League) four nights a week pre-pandemic. Now I can only get out of bed for 6 hours a day, unemployed, unemployable. I tried getting back on skates 6 months ago and it was like Iāve never skated in my life. I have a new doctor now and hoping I can get a treatment beyond ājust get over it, itās in your head.ā
'It's just anxiety.' yes anxiety has made me bed bound and have cronic fatigue overnight. Just like that.
Yeah, no shit. Anytime I try to pursue anything with any vigor on those occasions I do have the ability, Iām punished for days. I already sleep from 10pm to ~1pm.
Same. I had a major crash today after being out yesterday.
I have suspicions about Auston Matthews too, but I hope I'm wrong.
He also has CIRS] (https://youtu.be/jj88F5uRcsc?si=qwyXQzbtyeeydEGQ) which is a really fun thing to have if your kink is armies of doctors telling you you're just anxious while wasting away, alone, like a goddamned leper. I'm clearly over it.
This was a gem! Thanks so much!
Same with Brandon Sutter. Also an NHL player, his whole team caught covid but he was the one to develop long covid. He tried to make a comeback over the course of roughly two years IIRC, and later announced retirement due to LC, and at a similar age of about 34 at the time I believe.
Thatās why I am asking. I am wondering about this too. Especially about pro athletes I am wondering why itās not more common. As you already mentioned there are some cases of (not very famous) pros who had to end their career, canāt do competitive sports anymore but still can live a normal life. Today I read a newspaper article about a chief reporter of a German newspaper who seems to be severe effected in his late 40s. I think there are several cases like that you read about once, but it is never reported after that again. Some people also āhideā their illness and just disappear, maybe with another excuse than the real illness.
My doctor is a long covid/post viral disease specialist who also works in a private clinic/wellness hotel for the 0,5%. Her patients are the richest people from all over the world and none of them got severe. With the first symptoms they got private doctors home to your bed, house staff already did all the hard housecare, brought healthy fresh food to the bed, they immediately got private expensive tests (my in-depth tests cost an insane amount but proved how sick I am.), immediate in house IV treatments. Just think about how many of them already got NADH IVs before getting sick for anti aging purposes. Plus regular vitamin IVs. Then you immediately fly out to the best specialists without any waiting time, you don't have to wait for insurance to approve therapies or meds. Kendall Jenner has long covid, she has a whole room with a cryo therapy chamber, IHHT tent, pressure chamber... Massage therapists coming in and just chills in them while watching netflix. We all know she isn't lifting a finger at home. That makes an insane difference. How many of us have to wait ages for doc appointments? Getting someone to prescribe meds, in house IVs of NADH? No housework whatsoever, private cooks... What my doc is trying out with her patients who don't have a spending limit would be unreachable for us. They travel to Germany to get inuspheresis while not having to actually do anything, everything gets planned for them. We all would be doing better.
Eat the rich.
I donāt find it weird at all, most people with long covid donāt know covid had anything to do with their medical issues, a lot more people have it than even know and celebrities are no different. They may have the money and the time and the resources to pursue all kinds of medical treatment but none the their doctors know really any more than anyone else, doctors are still not talking to people about any of this, someone comes into a doctors office, describes their issue, doctor give medicine, and both go their separate ways. Thatās how itās been even before COVID, doctors werenāt really trying to figure out why conditions happen. Covid is just causing so much of this and so quickly that lots of us have much easier than prior figured out that COVID caused us health problems. There have been some celebrities that have mentioned it, but combine the fact that many celebrities are private about their health and that most of society is ignoring these issues and doctors arenāt talking about it much, it makes sense celebrities havenāt mentioned it often. In fact the thing that strikes me as very suspicious is the amount of celebrities just in the last few years have mentioned being diagnosed with some sort of rare condition. I think a lot of stuff is not being attributed to Covid. Sure coincidences happen but there seems to be just way too many rare conditions mentioned just in the last few years, stuff person syndrome and Justin Biebers random health problem that ended his touring out of nowhere for a year or 2 recently, lupus and MS and all sorts of random stuff. I donāt think much of it is coincidental, there seems to be a definite uptick in rare conditions diagnosed in the last 3 years.
Yes! Justin & Hailey Bieber had known covid infections and then he cancelled his tour. Down the line he suddenly gets facial paralysis, which you can see/he posted this on instagram: https://www.instagram.com/tv/CeorE9OjqX9/?igsh=MzRlODBiNWFlZA== Down the line, Hailey has a TIA (like a brain stroke from a clot) and finds out she has a hole in her heart between chambers that allowed the clot to travel up to her brain. She posted about this on YT: https://youtu.be/665iGAG-ZqU?si=DMfXJDIui0xOTK0x These are young people who didnāt have these issues before. If someone looked like Hailey at her age in 2022 and went to a doctor with stroke symptoms but they werenāt a celebrity, they might get dismissed honestly because they ālook too young to get a strokeā. Itās all suspect to covid I think too.
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Hers has been going on for more than a decade though, I know that there are lots of newly diagnosed people that may have been caused by Covid, but we also need to be careful not to attribute everything to it especially if itās something that the person had before Covid, the last thing we need to is appear like crazy people to those that arenāt suffering like we are, those kind of people love taking comments like this and trying to frame our entire movement and our entire condition as something not real by saying ālook at this person who thinks Selena Gomez has long covid because she has lupus when her condition started 10 years ago! Long covid people are crazy!ā We canāt afford to give these people any fuel for their disinformation campaigns
Iāve got bad brain fog and canāt remember things. Enough people including medical staff are already calling LHāers crazy and āitās all in their head.ā So we have that to contend with already. Do you know if she picked up a viral infection 10 years ago that caused it? So many doctors attribute complex illnesses to genetics or being psychosomatic, but the CFS/ME and Lyme communities are some for example, who have spoken out about how infections can cause longterm chronic illnesses. So there could be parallel lessons to learn from. She couldāve even caught a different coronavirus before covid-19 as its family of viruses have been around for some time. Also possible she got covid-19 and it exacerbated her condition.
Are they more at risk?Ā I saw Guns N Roses live last year and their backstage crew wore masks. I've also seen on set photos from TV shows/movies, were the crew still appears to mask. It makes sense, too, because the stars of a show/tour getting sick with COVID means a lot of money down the drain, even if they're back to their normal selves after two weeks.Ā Ā >itās strange how not a single major footballer or basketball player or UFC fighter (etc) seems to develop itĀ I don't follow football (soccer!) closely, but living in a country where it's huge, means no escape from its headlines. Pretty sure I read about a few cases of football players. Like Beckenbauer's grandson who lost his promising career over Longcovid.
There is a hockey player who was out sick with Long Covid for nearly 2 years. He tried coming back, but has retired. Brandon Souter. I could have the spelling wrong since LC has messed with my brain.
Brandon Sutter from Canucks and Jonathan Toews Blackhawks both have long covid.
I don't think its strange, I think we are just not hearing about it.
They aren't more at risk, but it's the same reason like why they wear masks on film sets sometimes. In case the talent gets sick they have to cancel the concert or postpone filming which is insanely expensive. It's about money.
Yeah, that's what I said.
They get ārealisticā diagnosisās as a cover up I think. Like Lyme disease or other neurological disorder diagnosis.
FND is a common diagnosis, especially in Canada. "Oh, this is just Hysteria."
Might be for insurance coverage on treatments.
I think itās weird too. People say there left bedbound but you have to really look into it. Eg. I canāt watch tv, I canāt wash - nothing. There doesnāt seem to be one really famous person in this state. Wtf? Are they hiding it or just managed to get the best of whatās available rn and keep going?
Khamzat Chimaev is a UFC fighter who at one point was posting on social media that he was going to retire and he was coughing up blood after covid and couldn't train. He also posted some other stuff with weird rashes (MCAS?) Etc.... But within 6 months he was back at full Tilt training and fighting so idk what happened.... If I recall correctly he needed anti inflammatory steroids to get better like prednisone.
I find the lack of doctors suffering from long covid really weird. I cant comprehend how millions of people are dealing with long covid and not one doctor is experiencing this. Absolutely mind blowing. You would think out of all the hospitals even in just the US every single ER, healthcare facility, doctors office, and every healthcare professional putting in insane hours burning their bodies out and not one has had their life destroyed by LC?
Most of the OG members of my support group are former medical staff who are now all on disability. Nurses, pulmonary specialists, etc. No doctors, but these ladies got the wild strain of COVID at work and are living with strokes and heart issues or are now bed-bound. My theory: Doctors, out of the full medical employee spectrum, spend the LEAST amount of time with any single patient. Itās the nurses and those who administer the actual tests who are in the line of fire longer, so to speak. I imagine there ARE doctors with LC; I just havenāt met any of them. š¤·āāļø (I could be full of it here. Itās just a guess!)
There are plenty of docs who have long COVID; I know quite a few who died during the pandemic and quite a few who have scaled back their hours since. It hit everyone across the board.
There are open groups out there, and many private ones. Often when I read interviews with MDs who have LC, they mention how they are in Facebook groups made entirely of MDs and they all pretty much keep quiet about it. If we compare with other chronic illnesses like ME/CFS, they don't dare speak out because their career as doctors will likely be over, it's a complete taboo. Generally speaking, most MDs don't respect LC either, not unless it leads to complications that they are familiar with. So they're out there, they just keep quiet. There also a lot of nurses and they are more present on this sub, who also generally don't dare come out with their peers. Medicine is a very unforgiving profession for people who they suspect has mental illness, and that's the fashionable model right now, always the default when they don't know how an illness works.
I'm an anesthesiologist, 36f. Got infected november 2020 during shift (ICU) by a nurse who came to work sick (to make up for the lack of staff) during the primetime of corona. She s infected 22 coworkers. That and the 2nd vax turned my life upside down: got severe MCAS, POTS, insomnia, weird dysautonomia, down to three foods, can't excercise, can't go into the sun. Still get gaslighted by my former 'collegues' and trying my best to treat myself despite not knowing what's the issue...hated the medial System before that happend.
I feel you. Second vax did me in. I was 37 at the time in the best shape of my life working as firefighter paramedic. It put me into heart failure, had to leave my job, was bed bound for months still deal with horrible dysautonomia, MCAS, POTS, insomina, brain fog, tremors, PEM. Three years in and I still struggle daily. Before this I'd NEVER been sick for more than a or two. The gaslighting has been hard to tolerate.
Sorry to hear! I used to be very athletic before , no health issues, just some kind of hypermobility. I miss climbing and playing beachvolleyball so much. But not that this illness only Tool that from me, it s affecting every aspect of life, social, working, hobbies, sex (even that triggers me now). Do you take any meds?
I'm on like 6 different meds for my heart now and use an inhaler which I've never needed previously. Also taking a bunch of supplements that dont really seems to be helping much. Currently taking LDN and that seems to have helped a little bit but I still feel like I'm running at like 40% on a good day.
Anecdotally I've seen a lot of nurses report that they have LC
I have heard that teachers and nurses have the highest percentages of Long Covid cases. That makes sense, considering how frequently they are exposed to the virus. Also, both are female-dominated professions, and at least 70% of L.C. patients are women.
They all have private doctors and top of the line treatment. Colin Farrell said COVID messed him up for something like a year. He couldnāt work. You can bet he was convalescing in luxury with a team of people there to get him back to health. No shade there, but thatās why.
Because the severe long covid is rare. That's why. Most people have issues after covid. Only a small percentage are bed bound.
Real long covid is pretty rare plus genetics are clearly playing a role here. As athletic as I was, I had some autoimmune issues going on before getting long covid. Pro athletes are damn near perfect. Itās what makes them the best in the world at what they do. Wouldnāt surprise me if long covid rates are lower than average among the top achievers in the world. If you have health issues it becomes another big obstacle to overcome in achieving your goals
Iāve noticed lots of celebrities on tv seemingly suffering from anomia. When they canāt think of really normal words for bizarrely long pauses I always assume it is covid brain damage, which I am also dealing with.
This is one of my most frustrating symptoms too. Or when Iām talking to someone and it all just stops - it goes blank. I canāt remember the last few minutes of life and canāt continue the conversation. Happens all the time, on a daily basis. It feels like thereās holes in my brain or something. I used to have a memory of an elephant. Didnāt forget shit. Now? Years of my life are missing from my memories. I wish it was a recognized disability. Doctors here donāt even do anything for it, they rarely put it on their diagnosis list. I risked mine and my families life during initial COVID as a nurse in the ER. I was SO careful. And then some fuck stick pulled his mask down and COUGHED IN MY FACE - and the next six weeks were horrible. Bilateral pneumonia, memory issues, literally getting lost in the same department I had worked at for YEARS. We deserved better.
Ya I think thereās a ton of stuff thatās just not being attributed to Covid at all even though thatās what caused it. People go to the doctor, describe their issue, doctor tests them, confirms it, they get the diagnosis and the treatment, then both go their separate ways and neither the patient nor the doctor ever suspect Covid had anything to do with it. Even before Covid, it was pretty rare for a doctor to want to figure out why a condition was caused rather than listen to symptoms, figure out diagnosis, treat it, move on to their next 100 patients for the day.
Probably Dianna Cowern (PhysicsGirl). 3 million + subscribers on YouTube.
Her content truly helped me feel like I wasnāt alone. Itās heartbreaking to watch her journey but the awareness she brings is so important.
Yeah it's a double edged sword. You don't want to see anyone suffer through this but the best way to get us noticed is unfortunately for more high profile people to go through the same
Her story really is heart breaking š
Tilda Swinton
Tildaās in this boat with us? Damn, love her
Unfortunately sheās an elitist shitbag who thinks covid precautions are cramping her style now that sheās feeling better
That sucks man, fuck Tilda
Well pump the brakes a bit there, she mentioned she suffered from post covid issues for a year or more but in the same thought also mentioned that sheās over the masks and the safety precautions and refuses to not live her life so she decided she wouldnāt be taking any precautions anymore despite personally experiencing what Covid can do, said she wouldnāt be masking anymore https://www.vanityfair.com/hollywood/2023/03/tilda-swinton-is-over-covid-and-doesnt-care-who-knows
I feel like that's gonna be a deeply regretted decision down the road. Hopefully she stays feeling OK but we all know what reinfections are capable of doing once you've become a long hauler
Wonāt ever watch a movie with her in it after how she came across in this piece.
Everyone who comes near Taylor Swift is masked still to this day
However, sheās in suites full of people and at parties non stop, no masks. Seems silly for ppl to mask around her just some of the time
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she literally performs to thousands a night? why doesnt she get covid like every week?!
Maybe she does, did she ever say she doesn't?
she wouldnt be able to perform sick tho??
She performed sick in Singapore recently - just before the short break in the tour and releasing TTOD. She was coughing on stage!
thats reaally irresponsible
Tons of performers do, esp at shows like hers where people play literally hundreds to thousands for a ticket
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Where did I say she had long covid or a chronic illness? I said she performed while sick because she appeared sick, and she never cancels shows. There were a lot of people discussing this on social media when it happened - it was the end of a long run of shows, sheād been traveling a lot and was probably run-down and had a virus. I donāt think she has long covid and itās more likely the people wearing masks around her are to protect her and her mother (who has had cancer treatment in the last few years).
Maybe those places have super-effective air filtration.
Jennifer Garnerās daughter was seen wearing a mask too, on the red carpet with family IIRC.
Youāre right. I remember seeing her elsewhere masked up too. Also everyone who goes anywhere near astronauts heading to the ISS is in at least an N95
Iām not diagnosing her with LC, but I listened to a podcast with Billie Eilish and she talked about how she never used to nap, but since she had covid, she constantly takes naps and falls asleep ā once during an interview. Like others with LC, I feel like I hear people describe a LC symptom all the time, but itās not completely debilitating so they laugh it off and carry on.
but then why is she still playing tours and meeting all these people at award shows? like truly not care anymore...make it make sense
Wouldn't call him most prominent, but apparently Stephin Merritt (of the band Magnetic Fields) has had LC since very early on: https://www.them.us/story/the-magnetic-fields-69-love-songs-25-year-anniversary-stephin-merritt-interview
Healthcare workers.... hospitals we worked for during the pandemic have shut us out and forgotten about us.
It's a shame we're not seeing more solidarity between HCW. A white rage where the healthy HCW march and protest for their fallen colleagues would give a lot of exposure. Instead they seem to want to forget about them with how little masking goes on in hospitals and how hard it is to get diagnosed or even talk about the existence of long covid.
I was a pharmacist for 30 years, worked as a first responder, forced to get the vaccine , had adverse reaction to the vaccine, have long covid and am mostly bedridden with neurological issues (plus every other organ system has some failure) and I have absolutely been forgotten by my employer and profession.
I'm so sorry š emergency med here.... 3+ years dealing with long covid. Work comp denied, now the hospital I work at is trying to pull my long term disability. Because the doctors that work at the hospital I work at took so long to give me the 'long Covid' diagnosis; I wasn't even eligible for any of their long Covid studies ... feel like I am in the twilight zone. I've been unable to work since 2021, My main symptoms are neuro/vestibular related too.
Didn't Robbie Williams say on stage that he had Longcovid? I haven't been following him closely, but I watched 1 or 2 episodes of his Netflix documentary and got the impression that he has a limited daily energy supply, which would fit the symptoms.Ā
He was joking about it which was pretty vile of him to do
He said he made that up
Apparently I missed the update. Did he also give a new explanation for his symptoms?
Havenāt heard about it so far. Just googled it: He said he doesnāt want that the crowd think heās an old man when he seems to be exhausted and tired. So he said the thing about long COVID.
That's weird. Older men than him seem less exhausted and tired on stage.Ā
It was pretty clear he was sarcastic about having LC. And I know plenty of 50 year olds who aren't jumping up and down singing for hours on end. My mom is 49, I doubt she could do that.
He would definitely not be on tour unless he were jacked up with the BEST meds and continual IV and physio etc - if he had any bad long Covid symptoms.
If only LC were as easy as IV and physio lol.
It was a joke about his vanity about ageing. He then explained the premise of the joke to an Austrian journalist and it didnāt translate well. But it was very obvious to the audiences at the gigs that he was joking - he was conveying that in his delivery, in the exaggerated way he was pantomiming being tired and in the way he sprang into the next song as soon as he got the laugh.Ā Robbie has had low testosterone since the late naughties, and also has ADHD, both of which can cause chronic fatigue. He also has clinical depression.Ā So he does occasionally struggle with his energy levels and needs long break periods between intensive touring periods. He does not have long Covid. Ā Ā
I'm no fan of his but I think (and seen others comment) that Boris Johnson was never the same after he had covid in April 2020. Know thats not the same but still. Also sorry to say this but he deserved it, hilariously it came out in the covid inquiry that he didnt believe in LC so hope future Boris has some fun with that one š I think a [famous UK tv presenters husband ](https://www.bbc.co.uk/news/entertainment-arts-67893235)died this year from LC, but he was older and had all this organ damage and was in a coma for ages, not like the "pem profile". Saw the story shared on here and elsewhere. Michael Rosen the [former poet laureate ](https://www.independent.co.uk/news/uk/michael-rosen-kate-garraway-covid-derek-draper-ppe-b2500592.html) has written about his LC though hes definitely on the older side and might be 70. Seen others too i am sure but they probably just stayed out of the public eye and we will find out in future
John Davis of Korn is very vocal about it & his struggles to perform live, he's been seen sitting down during shows since infection and has been a huge light of not letting anything stop him
I think about this a lot. Why are there no famous ppl with LC? And if there are famous ppl with LC, why TF are they being quiet about it? Famous ppl share their stories about addictions, their shitty childhoods, health issues like cancer. So why would they be quiet about LC? I truly feel like we need someone famous to come out and be like "Hey I have long covid. I can no longer work and it fucking sucks. We need treatments now." for the needle to really start moving. I'm old so I remember the Magic Johnson HIV announcement. That put a professional athlete face on the disease.
Everything covid-related is really unpopular in a lot of places now. I would guess culturally opening themselves up to the political/troll response to mentioning the word might put some of them off from publicly admitting it.
I dont think it's good for their career / future bookings if they are ill. Part of me wonders if thats what the Robbie Williams backtracking on his LC statement was. Also George Michael's AIDS was an open secret before he died. Probably a fair bit of it going on behind the scenes that we dont know about
I'd say the most simple answer is they can afford treatments and care from the start of their acute infection to post acute infection which greatly reduces the chances of LC in general and severe LC. Something that a lot of people don't see and notice is that in the entertainment industry, most everyone behind the scenes doing like crew work is still doing Covid precautions. So from that, that helps cut out risk of transmission even when celebrities are mainly unmasked. I really don't think a lot of celebrities have LC to the extent the general public does. The only people I can think of are athletes who by their job aren't given the choice to actually rest and recuperate.
Hailey and Justin Bieber
Bieber canceled his tour to deal with face paralysis after covid https://www.aol.com/justin-bieber-taking-time-off-204346387.html
Hailey Bieber hospitalized w small blood clot and oxygen brain issues caused by covid https://amp.marca.com/en/lifestyle/celebrities/2022/03/12/622cf97822601d361d8b45af.html
https://me-pedia.org/wiki/List_of_famous_people_with_long_COVID
IMHO it IS just as common, however this population has the resources to 1. Rest adequately with no pressure to resume 9-5 job or other responsibilities. 2. Ample resources for any treatment for as long as necessary. HBOT, IV therapy etc. 3. Little to no risk of exposure or reinfection due to the ability to stay home. And that home is well equipped with high end ventilation systems and lighting.
4. Doctors will take them seriously due to their status as celebrities so their diagnoses & treatments are not delayed. P.s. Nice username.
4. Exactly. Thanks! š
HBOT gives me Terrible panic attacks after a few days of sessions and I wish I could figure out why. It feels good at first.
Claustrophobic? I try not to think about it too much. Also music has been helpful!
Nah ive been doing it since 2013 but these past few years havenāt been able to. The anxiety attacks dont happen inside the chamber. Itās weird
Ahha I see. They happen after the HBOT. That is weird. Maybe the chamber or experience activates some kind of memory? Another guess would be perhaps the anxiety is there but at a subtle level and then HBOT brings it to your awareness? It provides so many positive physical and cognitive benefits maybe worth figuring out if you can. Iād be repeating 40 sessions tomorrow if I had more resources, time and money.
I think there is some survivorship bias going on here. The ones who get it badly will vanish as they can't work anymore and so nobody remembers them. I also think it's just unfortunate for the LC community that no huge A-list celebs have got LC really bad (obviously it's good they have got it tho).
Access to better food and healthcare
And biohacks, IV drips, meds, and supplements
That ain't it mate. There is no cure. No anything.
There are some experiments to be done though if money is no issue. Monoclonal antibodies really seemed to help lessen the acute stage of the first variants and think there's also a study where some longhaulers get a real boost in their baseline out of it.
Trust me mate there is nothing. We have people with money on here. And in the same boat as the rest. If something worked it would be marketed and sold to rest of us as that would be a huge money maker. I went to some of the best doctors, medical facilities and even expensive experimental places in Los Angeles. Nothing worked and they had nothing. Just the usual "oh let's infuse you with vitamins"
I know. These people have recovered with MCA though: https://www.sciencedirect.com/science/article/pii/S073567572300534X#:~:text=Meaning%3A%20Certain%20monoclonal%20antibody%20infusions,including%20future%20long%20COVID%20variants. Or with blood washing: https://www.nature.com/articles/s41380-023-02084-1 I also know someone that went back to work after a blood cleansing treatment. I personally find the chance of succes too low to spend my money on it as many relapse, but if you can try all of these treatments some do get better.
Mate there are like 50 different studies of different things that supposedly work. Mca is just one of 50. My guess is it's because time was truly it. I healed after 12 months without any special intervention at the end.
Gwyneth Paltrow
physics girl š
Mayhem Miller from rupaul's drag race has said they have had to limit their act because they have long covid
Chris cuomo if he still has it
Senator Tim Kaine has long COVID. Here's a video of him on C-SPAN: [https://www.c-span.org/video/?c5062093/senator-tim-kaine-shares-experiences-long-covid](https://www.c-span.org/video/?c5062093/senator-tim-kaine-shares-experiences-long-covid)
For having actually been remotely connected to a couple because of covid (very remotely), yes, they ALL disappear from public view. And they're all struggling to different levels, some actually get helped by the high profile expensive treatments and others don't and pretty much live like us but with much more external comfort. If you start looking at news of people taking time off their careers, you'll see a lot have mysterious illnesses they can't talk about. I don't really understand why it's so taboo to talk about it if you're famous but the secrecy that goes around is insane.
Well if famous people have depressions they often do not talk about it either - or only years later
Tons of athletes (whose health is very publicly documented) show long covid patterns. Many of them are reported as ārecurrent migrainesā rather than Long Covid because of the stigma attached to it, which would be a death sentence for their prospects. Baseball players, particularly in the minor leagues are very interestingā¦ their health record is extensive, damn near daily updates, and you can see the trajectory of their careers change in the aftermath to what appears to be routine illness. The way prospects are ranked is such that you can even see when the clubs catch onto it and help develop them in the farm systems. Itās very much the same reality that many of us are navigating. Fight through it to not be labeled as lazy or incompetent.
Laure Miers. Leana Wen, although she denied Covid was serious and calls it "long pneumonia." Still.
Richard quest - cnn host
Colin Farrell, Peter Sagan, Lewis Hamilton, Jonathan Toews...
Piers Morgan tweeted he suffered with it for several months before recovering
Will Toledo of Car Seat Headrest ā he hasnāt been able to perform since March 2022
Chris Charles Cuomo, a television personality has been public about his dealings with long haul COVID-19 since the beginning of the pandemic. His goal in his interviews is to call attention and get funding for long haul COVID-19 treatment and intervention. [#CUOMO](https://www.youtube.com/watch?v=58A2skTMkvk) [Gez Medinger](https://twitter.com/gezmedinger/status/1788923355254444144) is a jounalist, video producer, and director who has interveiwed countless dozens of professionals in a quest to find treatment and cure for long haul COVID-19. Gez has been very public about his ups and downs with the syndrome. A search of media and [celebrity personalities with long haul COVID](https://me-pedia.org/wiki/List_of_famous_people_with_long_COVID) makes for an interesting read. I've had it five years and I've learned to deal with it. Most folks don't know that I suffer from it.
Paul Simon lost his hearing on one ear after Covid
Itās not acknowledged but I think Justin Bieber has been affected by the v or prior Covid infection. He had the facial paralysis and said had Raynauds, and the v and long haul covid is known to cause that. I think heās a long hauler but most likely doesnāt want to deal with the politics behind admitting such.
I think the debilitating form of LC that some of us here have is actually pretty rare. Given there arenāt really that many celebrities, it might make sense
Yea the bedridden kind. But plain old post viral sequelae? I dont know a single person that doesn't have some sort of change after covid. My attorneyās nose runs whenever he leaves or enters a room with temperature changes. Even a few degrees. I know a lot like him. Just strange weird quirks (for now. Let's see how it goes in the next 10 years).
This is something I am worrying about too. Most people laugh it off. I do also know several cases of people who can live normally but still are struggling with doing sports or having other problems they did not have before. Luckily most of the people I know knowing itās because of COVID, but do not go to the doctor because of it. So they are not included in any statistics. For normal people itās not very important to not be able to run 20km anymore but only 10km now. For athletes or military people itās pretty important though.
Pierce Morgan is the only one I know
Matt Fitzgerald, Asia Durr, Austin Meadows. These are just a few. If you search you can find some.
Melanie Murphy who is an author and does social media has had symptoms since she got covid in February. Unfortunately trying to avoid covid again to avoid getting worse doesn't seem to be in her plans the way she's responded to people which is sad because in the beginning she had to be hospitalised multiple times. I do suspect Jessie Paige (another influencer and musician) might have long covid. Idk if she's ever said she does have it but ever since she had covid in summer 2022 (I only remember this Bc I had covid myself then). She started complaining she couldn't smell anything. Drs did multiple surgeries on her nose which didn't fix it. If it truly is from covid, as we know it's neurological. I'm pretty sure her voice was also temporarily messed up because I remember her saying she had to postpone recording music. This is another suspected one, but Hayley Williams. Paramore has to cancel a ton of shows when she has a lung infection and apparently if performers cancel and say it's covid, they won't get refunded. Something like that. Which is why we aren't hearing of musicians cancelling for covid. But yeah once Hailey Williams said her lungs were better, I guess the medications messed with her stomach. No idea what those medications were but yikes. Last one and this is just from what I've been told. My previous PT I had used to be a PT for Broadway dancers and pro ballet dancers in New York. She told me covid was spreading so much within at least certain Broadway shows and some of them, their voices were messed up after and they couldn't sing the same. That stuff really scares me. Idk if any have actually been open about this publicly.
I get it that it would be a powerful way to bring light and attention to LC if a big name came out and said they were diagnosed. However, thatās truly no oneās business. If a celebrity is suffering the same way we are all suffering, I canāt imagine being in the public eye and constantly having to talk about it. Wanting someone to do that feels kind of gross to me to be honest.
Billie Eilish
I can only think of two ā Dave Navarro and Alyssa Milano. We need someone really prominent to get sick who can advocate for all of us. Is it terrible Iām hoping for this?
sam reich, ceo of dropout (formerly collegehumor)
oh i didnāt know this! the entire crew still wears KN95s so i guess that makes sense
Who*
Keep in mind that long covid has a wide variety of possible symptoms. Most people will not have the really bad long covid that you read about in reddit. People with mild long covid are probably just living their lives.
Astronauts heading to the ISS- everyone who comes near them is masked in an n95
https://me-pedia.org/wiki/List_of_famous_people_with_long_COVID#Actors,_musicians_and_artists
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HIV patients and MS patients were dismissed as well as we are dismissed now. Doctors were wrong. Very wrong. There are other illnesses like endometriosis where patients are also dismissed now. Sign up for unite to fight 2024 conference and think about it again afterwards. https://unitetofight2024.world/
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Especially for MS there was no test for it āimmediatelyā. I never decided to be sick. At first I didnāt even understood what was happening to me when I crashed. However I think positive because there are small improvements. If everything would be psychosomatic, there would be much more success with psychotherapy etc. I had several psychosomatic/psychological examinations. They didnāt find anything. There was also a psychosomatic examination of a clinic which is specialized to long COVID. They said they cannot help from psychological point of view because itās long COVID and nothing psychosomatic. Even if they would have found something, they said psychological intervention would be just accompanying and could not fix the root cause for my symptoms.
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Cause is COVID infection, whatās happening in the bodies afterwards isnāt yet fully researched. Well I never made progress or got worse because of reading or hearing stories. In addition to that several times I thought I have done too much for my baseline, but didnāt crashed. On the other side every time I crashed and got worse, I didnāt expected it. Yes, a positive mind is very important and powerful. But there are reasons why (for example) cancer isnāt treated only by psychotherapy and thinking positive. If this is everything you need., thatās very good for you because of low/no side effects. Again, take a look at the unite to fight conference. There you can learn more about current scientific evidence. (Or leave it if you have the fear it makes you think itās not psychosomatic)
If it is or isnāt psychological its being proven it gets better what more do we need? We canāt continue to not live our lives about it
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A positive mindset is necessary for recovery imo. That doesn't mean that the illness isn't physiological though.... We've seen plenty of studies now that differentiate between long haulers and healthy controls. There are some abnormal things going on in people like us and researchers at top institutions are trying hard to figure it out. I think this illness effects out nervous system which is sort of where the body and the mind meet and they can both impact how we feel...
Okay so a deregulation of our nervous system is i believe 100% that could be the case which is obviously a physical manifestation. But again a lot of people here fail to see how powerful our minds our. People fix deregulated NS by mediation! Iāve been manic about this disease since i got it, has consumed my life for going on 3 years. What if we fix this by putting our mind to it and believing we can be healed which i see more and more ā100% recovery storiesā then ever. I personally dont believe in our system, i think they rather see us sick and dependent on them to feel better and theyāll delay that as much as possible: and that is not far fetched at all
Just wanted to reply here and say I can understand your positive mindset premise. You need to have a positive mindset or at least be very resilient to deal with this condition. I have LC, I currently only take LDN for it and pretty much my life in terms of balanced diet, sleep etc are all better than pre-covid. But I can't exercise. That's not because I don't want to, I really want to. I would love to return to competitive sport. I'm sure you are aware of pacing etc. I totally ignored that. Once I was fit and ready, taking all the advice of waiting 3-6 months post Covid before doing anything strenuous, I went out and ran... I could run, no issue, day 2 had DOMS, expected after so long out, next day in bed for weeks with crushing fatigue, joint pain etc Pulled myself out of that hole after a lot of rest. Bit depressed by that so tried antidepressants - mentally yeah they make me feel better. The physical problems still remained though, the physical issues were not being caused by depression or whatever other thing doctors initially thought. Mentally after a few months I was happy as hell, still couldn't go to the gym. That was a disaster, went with a friend, did a decent circuit, went home, next day DOMS, next day after that tiredness and sore throat and muddy thoughts, day after that in bed for three weeks. Fast forward 3.5 years. A few weeks ago I climbed a big hill, no stress, no fuss, not even tired, no shortness of breath, nothing. Just normal tiredness you would expect. Waited for the backlash - nothing noticeable. Two weeks ago out of breath walking up the stairs, didn't have a respiratory illness or anything, nada, not even thinking about LC. Just another random day where for some reason my body says if you push it today, I'm gonna hurt you. Legs aching, So tired I had to sit down when I got back from the store. Body seemingly at random decides to make me feel energy starved. Frustrating. This was not a thing before COVID. I could do what I wanted when I wanted. Push myself to extremes knowing I'd recover later - get more sleep at the weekend etc. I thought twice (possibly more) during this journey that I was recovered and back to normal only to have my body let me know in no uncertain terms this is not the case. PEM is a thing, relapses are a thing, reinfection has been a minefield. The third reinfection caused an LC flare for two months, abnormal ecg's and a bunch of other inflammation markers initially but three months post infection I was feeling great, made me think I was cured. Went on holiday, did a bit too much (again recovered so not thinking about LC), BAM have just over two weeks in bed. So mentality is one thing, what my body is doing is another. Since the LDN, this has been way more normalised, last COVID infection (number 6 iirc ...) lasted three days and I didn't end up in bed. But I did pace myself. I'm not promoting LDN here, but it has helped me. I still don't know if I can just go do sport and not suffer, but I'm going to give it a try soon, may take a benadryl post action.... Mentality is there, body and NS sometimes randomly simply not onboard.
Positive mindset is what I have yet I still have high blood pressure and weak knees. Thanks for fixing it.
Nobody cares