Something about getting older that I wish I'd been warned about is that you won't always get back to 100% after an injury or illness. When I was a kid I'd get sick or break a bone, but after recovery I'd be good as new. Now when I hurt myself I still get better, but sometimes not all the way. There's a kind of cumulative battle damage over the decades - sure my knee still works, but not as well as it did when I was 25 - and that has me hoping that one day I can trade this body in for a newer model.
As a young man I thought I had to prove myself so I volunteered for missions that I shouldn’t have. I wasn’t a SEAL but most of the people I worked with were Navy SEALs. I did things to my body that hurt me and 45 years later I feel every little bit of those injuries.
I think that really depends on how well you recover, your level of immunity, genes, food choices etc. And I’m saying that age 66, after cancer surgery and 6 months of chemo that ended 6 years ago. There is no need to settle for less than before, you need to restore your level of activity (i played squash even during chemo, as i was more or less functional one week out of two), review and change if necessary your food choices (i went to low-carb after a few trials and errors, significantly reducing bread, pasta and hidden sugar), even walking more is a good activity both for the body and the brain. Get regular blood tests and check your progress, but don’t consider that you can never restore your previous level, or even improve on it. There are many supplements that can restore mitochondrial functions and other important metrics of your health.
You set the bar too high as a child. Now that I'm entering the 4th decade and finally starting to take care of myself, I feel better than ever. My teens don't have anything on me now. Except being able to fall asleep whenever/where-ever.
I got ME after several pneumonia infections during 2013. I'm doing much better, but I can't do more than just work. I crash everyday after work. I miss doing things.
@@TraceDominguez Thanks! When news started coming out about Long Covid we both thought the symptoms sounded the same. It gave a bit of hope that doctors would see the same pattern in ME patients. It's like you said, they are noticing but still a long way off being accepted fully. Great you're raising awareness!
Dianna's circle are some of the only people I see stepping up to talk about this and do it well. Your video makes it very clear how many people are suffering with these things and so few people are out here showing the world what it actually is and looks like. I really appreciate that. I hope one day we can hear it from Dianna herself, but all of you taking it on yourselves to be her voice and the voice of so many without platforms or energy is really important. Thank you for believing and taking a stand.
@@sparklesparklesparkle6318 did you notice the pandemic just 'went away' no more 'new even more virulent' mutations every week. Seems it went away the moment the Ukraine Russia conflict started
Thank you. I have been dealing with long covid for 13 months now, with no reduction in symptoms. A member of my care team recommended this video to me during a session today and it explains things better than I have been able to so I am directing everyone I know to watch it to explain what I and millions of others are dealing with. I've been 8 months with no income now because my medical insurance doesn't believe anything is wrong with me, and the stress of trying to deal with it is exhausting, so thank you.
@@The_Green_Man_OAP Believe me, I am taking all of the supplements and superfoods that my treatment team have recommended, and so much more, I won't say it's not helping, but it's not a cure either.
I'm 3 years into CFS. This condition takes everything from you, and the worst part is nobody knows because nobody can see you. Sometimes I wonder if I'm still human or if I'm actually dead. Doctors don't seem to care either way.
ive had long covid for about 2 years now. A couple of things.... Look up Dr. Jack Kruse but I would also heavely recomend medicinal mushrooms, I use cordyceps, lions mane and reishi. NAC helped a lot as well as quercitin. These things enabled me to actually lift some weights which if done in a specific way will cause the epicenetic expression to slowly revert to normal, at least in my case of long covid. Sad to hear this from you, Ill be happy to elaborate
@@DiaboloSnipEzhi, thx for the info. I’m a 16 month long covid sufferer here with fatigue, gut issues, hypoglycaemia which didn’t exist before and chest pains. I’m currently on quercetin and vitamin D3, zinc, magnesium statin for excess lipid issues post covid. Tried NAC but didn’t solve my problem. Please advise whether you take all three medicinal mushrooms that you mentioned in combination or separately and how many times a day and whether in the morning or evening. I had no comorbidities before covid. Thanks.
Long COVID virtually same symptoms as ME, or CFS, Chronic Fatigue Syndrome. ME and CFS have been around since the mid 80,s, remember ,,Yuppie Flu,,. ? Nothing to do with vaccines. Mostly a result of having had a nasty viral infection, EG Flu, Kidney viral infections, and so on. The mitochondria in cells are damaged permanently, and don't recover. For some, CFS has become a life long condition,. Not enough known about CFS, and not enough research. Now with Long COVID, MAYbe more money for research into both. 🤞🤞
People are healing using neuroplasticity exercises (look up "brain retraining" programs such as Gupta, DNRS, ANS Rewire, CFS School...) These programs are rewiring our brain to help regulate our limbic system. Also, the podcast "the chronic comeback" has dozens of testimonies from people who recovered from fibro / CFS/ Lyme etc.
Thanks for this video. I'm in England, I've had M.E. for 40 years now. Doctors are still not taught about it in medical school and patients continue to be abused by doctors, they are disbelieved and told they're not trying hard enough. I wish they could have seen us before we became ill. No one chooses to live like this. Its not living, it's a living death. And so far it's been totally ignored.
@@stevesherman1743 Unfortunately true 😔 How many lives and livelihoods could have been saved if pharmaceutical companies and the doctors on their payroll within highly developed nations hadn't done everything in their power to fight against the use of the least profitable and most effective COVID prophylactics and treatments available to us?
Thank you for this! Excellent info as always! My wife has Fibromyalgia and so many doctors simply treated her as if she was crazy. She still is poorly treated. "Believe the patients" is one of the more powerful things you said. Thank you for doing this.
My mum had this. They were doing all sorts of trials at the time and she had a lot! The ones that brought the most relief was acupuncture but it didn't cure it. The trials ended after a couple of years and she was still no better. After five years it just went away on its own. Such a strange condition but there is hope that it can just go.
40 years ago I got Glandular Fever. It came to Australia via the US teachers. I had been extremely fit but when I caught glandular fever things went backwards in weeks. It took ten years to recover. And yes I contemplated suicide many times. Initially the doc couldn't find any functional white blood cells so he told me to take my tent to the river and avoid people at all costs. But that was only the beginning. From being extremely fit I found I couldn't walk even 60 metres without stopping and sitting and puffing for some minutes. On Friday I would get home from work, have a bite to eat, then go to sleep. I wouldn't wake up for more than a day. Typically I would wake up about midday Sunday. After several years I had recovered enough to do some exercise. But I paid a price. Each day after exercise I would sleep a LOT longer than the day before. It was horrible. The doc suggested that it would take five years but it took a lot longer to be back to "normal". 12 years after the infection I walked through Nepal to Everest base camp in mid winter. Which was a demonstration that I had finally come out the other side and could start to regain fitness. Now that I am in my seventies I am back to being fit. I can ride my bike at speed for 50 to 100 km each day. Then come in with sufficient energy to spend a few hours digging weeds on my farm. Then take my dog for a run for a couple of km. But in my thirties as a result of that glandular fever forget it. I was a mess. So I am terribly scared of long covid. I may not live long enough to ever be good again.
My partner had/has long covid, but has made a lot of progress. We think her progress is attributed to the restrictive, anti-inflammatory AIP diet she's stuck to long term (with some carefully chosen re-introductions). 3 years ago, she couldn't walk 50ft without being exhausted. Yesterday she completed nursing school.
Tell her congratulations from me. Also as RN of 39 yrs before disabled, be zealous of your health. I have been pushed to work exhausted, sick, with short time off from surgery and guilted into huge patient loads where got hurt by having to lift heavy weights. Never stop reading, know the labor laws in your state, never stop caring about patients. Good luck
@@Fizzypopization everything has to do with diet. some things are really not good for anyone but they sell it in a walmart. food is our fuel. of course is going to matter what you eat.
Thank you for this, to see people outside of the ME/CFS community using their platform to raise awareness is really great. There's some really exciting work being done by researchers like Bhupesh Prusty and Ron Davis, but they desperately need more funding.
@@nyxbellatrix011 that is exactly what I was thinking. Maybe someone will eventually come clean about the so called vaccine and it's damage with not really any benefit to people who have taken it. I am a veteran and was in the VA ER last year for other issues and the nurse that I had says he and most of his coworkers have had covid 2-3 times. All have had every vaccine, boosters and whatnot, wear a mandatory mask and they still have gotten covid more than once. Obviously the CDC rewording what is a vaccine didn't keep these people from contacting it multiple times.
5:49 I feel that hardcore. My Mom has fibromyalgia, another disease doctors say "doesn't exist" and is "all in your head". She's practically bed ridden and here in the state of GA we went to court to show that there was a 0% possibility of her working and she had FIVE different doctors sign off and 2 testify and they STILL denied her disability because fibromyalgia is "something the doctors tell you you have when they can't find the real reason".
@@sharrpshooter1I agree that it's time to appeal. I have CFS and was denied on my first try. I had a roommate sign a witness statement detailing symptoms that were visible to him and submitted it along with a request for reconsideration (which occurs prior to an Appeal). Luckily, my SSDI was approved at that stage, thereby sparing me the appeals process. The process is tedious, but persistence should pay off eventually.
Psychosomatic diseases are a thing. The symptoms are real, but there is no underlying real disease. Psychical diseases have real, physical markers to diagnose them. The body is complex, but not that complex. The brain, on the other hand.. still effectively a black box of mystery. Therapy is the only path to curing psychosomatic illness. We don't have a medicine that can cause someone to believe that their illness is in their head and that they are capable of overcoming it. Thus far, only they can do that, themselves.
My aunt has been struggling with ME/CFS for over 25 years and she's been looking for answers the entire time. It's only in the past few years that it feels like real work is being done on the syndrome.
Same thing for my wife, with CFIDS. She's had it for 5 years now. It's been extremely frustrating to see that there is basically NOTHING to be done. She has come a long way, but is still far from fully recovered. I really feel for your aunt, having had it for 25 years. That is so sad and I'm frustrated for her.
@@mark7166 have yall tried cordyceps mushroom? helps a lot with my long covid situation. lionsmane helps a bit mentally too. These might be basic and there are more options to try that I personally use but i thought ill ask
I had mild covid the third time I had covid. I have long covid and it’s a struggle, no where near as bad as Diana. I have lung pain, brain fog, headaches, insomnia, shortness of breath and constantly feeling nauseous and my doctor says there’s nothing wrong with me.
The thing that absolutely breaks my heart every time is when I see people commenting, get well soon! Or, I hope you feel better soon! Or worse when the person themselves says hopefully I will be back to my normal self in no time. I don't deal with any chronic illnesses, but I am good friends with several people who do, and it's heartbreaking to watch the General Public be confronted with the reality of chronic illness for the first time. There's no getting better, there's just management. There's the hope that the good days will exceed the bad days, but the bad days are not going to stop. There is no back to normal.
There is no “back to normal” is the toughest part for people to understand. The narrative from movies and tv has normalized that feeling, but there is no narrative in real life.
I wish I could encourage them to get sunlight exposure, drink cherry tea, have about five pieces of real licorice candy (Pontefract cakes or Haribo Salinos), and at least one small bowl of kimchi. Most people would find that too complicated or unpalatable but this really works largely by restoring your microbiome.
@@zeideerskine3462 I wish I could get people like you to realize that there is no magic cure and these people have tried everything. You suggest this, everyone and their uncle has a different set of obscure suggestions. It really isn't helpful. My father has stopped telling people he has Fibromyalgia and just says he's retired because he got so sick and tired of all the backseat medical professionals.
Thank you so much for this video, Trace. Would you consider a long term commitment to mecfs/LC advocacy? I've had ME for 17 years (if not longer). This community desperately needs able-bodied (and charismatic ☺) advocates. 🤗
Let's throw Fibromyalgia in there too. I developed it after I had extensive back surgery in 2008, by 2016 I could no longer work. I'm only now starting to be able to minimally manage pain symptoms, but the fatigue is truly debilitating and traumatic for not only me, but the people who care for me. I've lost so many relationships simply because I can't maintain them.
@@KA-in6sx My sister has Fibromyalgia and I have ME/CFS. We compare symptoms all the time and yeah that's pretty much the difference. For her the pain is worse, for me the fatigue is worse and I really wish someone would get rid of the cicadas. She doesn't have that particular symptom, my tinnitus is constant and can get pretty loud. Luckily she's already been through the gauntlet here and made sure I had the name of her rheumatologist 😊
Toss Hashimoto's Thyroiditis into that same boat. I enjoy the wonders of feeling like I ran a marathon for several days if I just do a modest amount of physical work past my daily limit which seems to vary like the weather lol. Basically, 5 hours movement/10k steps practically guarantee a 3 day bout of muscle aches and other issues.
You can throw in many diseases. Dementia, alzheimer's, schizophrenia, various thyroid conditions, bi-polar disorder, parkinson's disease, MS, ALS, rheumatoid arthritis are all diseases with a considerable amount of overlapping symptoms and all of them have been hugely neglected by the medical community or the research is biased towards outdated theories. They all can be triggered by infections if immuno-genetic subceptibility/vulnerability is present. And there have been accounts of people who got cured or cured themselves following unorthodox therapies. (mostly doing genetic testing and then trying to fix the genetic problem via supplementation or drugs) Or by eliminating potential immunologic triggers (gut microbes, latent infections, reactivated infections).
I have this. It's ruined so much of my life. It took 7 years to get diagnosed because doctors didn't believe me. I've been basically homeless ( a friend in a different state took me in) I work in the food industry so it's tough work. I don't have a choice. It's nuts
I wish I had something better to say about this but all I can think of is how sad I am for people who have had the person they were taken away and left with a broken shell of a body.
I have the exact same symptoms, from the same strain of Covid. Thank you for bringing up mental fatigue. I can no longer read a paragraph without wanting to fall asleep
I really hope that Dianna will get better. i miss her videos. And even if she will not be able to make videos (i hope she will eventually) i wish her well. To all others who have long covid. i wish you well too.
As someone with ME/CFS I appreciate that you are spreading awareness about the illness. For years I’ve had doctors who don’t understand my struggles because the are unfamiliar with ME/CFS. Hopefully the medical community will begin to do more research and find a cure rather than just having medications to treat symptoms.
@@KristinaApplegate Thank you for your message! After googling and reading several journals and blog posts it appears that the efficacy of FMT in ME/CFS patients is mixed and is not currently recommended as a treatment. (Though it may help if you suffer from IBS with ME/CFS. I used to, but found another treatment that worked for me called Linzess. It's a pill that is supposed to treat symptoms of IBS but it made mine go away for some reason.)
I'm so glad you addressed this. After infection from the original strain, I've had multi-organ affects. I can sleep for hours... and still be tired. I have to really force myself to get up and do something, and more times often than not, take a 4-hour nap.. only to feel disgusted with myself and my body.
@@seaofcronos675 Not when I caught covid. Then as vaccinations came out, I seriously considered both arguments, and decided to get "vaxxed" against stupidity.
@@darrenvail8726 Yes, Darren. After nearly dying with the original covid-19. Once the vaccines became available. I've caught it since then, but not as badly, thank goodness.
I've had debilitating chronic fatigue and mobility problems ever since getting a series of really bad flu infections back in the 1980s. It's nice that now these things are being researched more intensely and taken more seriously. I've been kicked out of so many doctors offices, being treated like a faker or like I'm just trying to get drugs. I've seen some recent, very preliminary work that hypothesizes that both long covid and chronic fatigue might have symptoms caused by chronic acid-base imbalance, making blood more acidic, which could explain why we're stuck with constant, intense muscle aches like we've been running a marathon. If doctors find effective treatments for long covid, it will help *a lot more people* with chronic fatigue as well, from previous epidemics.
Same, since 1989. I severely worsened 8 years ago after a flu shot went wrong. I was working full time prior to that, over a week I deteriorated to severe and mostly bedridden and or housebound. I’m lucky I can still write and read, but I can’t do much more than 20 to 30 minutes at the time without having an hour break in between. but the worst part is the fever like symptoms. Influenza like symptoms and hangover like symptoms altogether.
@@nyoodmono4681 I'm not the one you're talking to, but allow me to comment. I've had MECFS for 14 years and have never had a vaccine of any kind. How do I know it's MECFS? I know because my symptoms match the symptoms that most MECFS sufferers have, including post exertional malaise.
Thanks for making this video, Trace. I've been a fan of Diana for years and it's been heartbreaking watching what has happened to her. I hope science has a solution for long covid soon.
More people need to be aware about ME/CFS. Including Doctors. The lowest Quality of life illness with the least funding - especially when compared to other illnesses and the prevalence of 1.3%. Why has it taken Covid for people suffering with ME to be heard. Who knows, but we need answers and treatment asap. People are suiciding daily. You just cant live with these symptoms and be bedridden 24/7. Not only is that the new life, but there is also no hope unlike many other illnesses adequately funded
I was hit with a double whammy of sorts. I had shingles twice last year in the spring and then caught covid in the fall, and it did me in. I spent so long trying to protect myself from it and it still happened. It's hard trying to explain to my family and friends how PEM works and how I can totally do the thing they want me to join in on. But that's because they don't see me in bed needing to be fed by my husband for days afterwards. Nobody wants to see their friends sick, it's traumatic and everybody feels helpless. I get it. If you have a friend with mecfs or long covid, ask what you can do as a friend to be there for them. Offer to fold laundry. (My arm strength is zero now and if I hold them above my chest ill eventually faint) bring a movie and snacks over and explain that you don't have to talk you can just be there for them. Everybody is different. listen to your friends. Ask how you can help. Don't give advice unless they ask for it. Just listen.
I’m very sorry to hear of your situation. I’ve been living with ME/CFS for 30 years, it took way too many years (even decades) to be checked for the autonomic dysfunction/dysautonomia/ orthostatic intolerance/POTS/hypotension umbrella discussed in this video. I only mention this because once I received this diagnosis, it was explained to me that this is what causes holding my arms up leading to fainting. This is at least one of the comorbidities that does have some treatments available that can alleviate the symptoms a little and improve my capacity. Trying to make a bed with all the lifting up of sheets and covers though … forget it! But at least I faint on the bed ;) I researched my local POTS/DYSAUTONOMIA online groups to seek advice on the most respected cardiologists working in this field in my area, I have no doubt this saved me a great deal of money, time and energy. He was able to diagnose me quickly and start me on treatments immediately. I wish you luck and all the best on your journey ahead, I hope you find a way back to good health.
@@batubop651 you might want too research a guy called Dr. Jack Kruse. The guy likes sunlight more than you could imagine. If you dont already know him that is.
Thanks Trace, that was a pretty good overview of the issue. Tens of thousands of us with prior ME/CFS warned about this from the start, there is no question that we would be further ahead if we had been listened to, far more so if it had happened decades ago. All the same old mistakes are being repeated exactly the same way, with very little institutional support or interest. All of this was a choice, psychosomatic medicine is a weird obsession in the profession, a tradition that can't be left in the dustbin as it should. It's belief in psychosomatics that blocked everything and still does. Those beliefs are very powerful, and have decades of tradition behind them. We badly need people to denounce how wrong this is. If only we had been listened to. Peptic ulcers should have been the end of this, but no lesson was learned and this trolley just keep crashing into millions of lives.
So glad you thought it was a pretty good overview! The more I looked the more I found. There’s a ton of information out there scattered all over the place!
You need to bear in mind that we are talking about a profession that took 40 years to acknowledge that washing ones hands before childbirth or a surgical intervention, "was a good idea". We are talking about people who have so much difficulty questioning their knowledge that they prefer to deform reality than accept they might be wrong.
The fact that you dont accept the fact that the vaccine DOES NOT CAUSE Covid symptoms like these is embarassing. It reduces them greatly. The vaccines also are everything but experimental. They have all gone through the full three stage testing that any other vaccine goes through. It does NOT take years to develop a vaccine. What took years in the past was discussions about money that have cost many lives. There is zero increase in any health issues that may even remotely be connected to the vaccines. Almost all people suffering from long Covid or severe Covid are entirely unvaccinated
Just an FYI: Long Covid was an issue long before the vaccine roll-out (the term was first used - hashtagged- in May 2020 to refer to "long haulers" suffering extended symptoms) Very impressive for vaccines to cause Long Covid in tens of thousands of people before they received the vaccine. Nobel Prize winning science paper right there. Note: I'm not saying vaccines can't cause issues, but all these people postulating these vaccines as the root cause of long covid is nonsense.
It was considered. It was tested. There are papers on it. Sorry you haven't read them (maybe you should?) Also one billion people worldwide have taken COVID mRNA vaccines. The thing is, Long COVID, a.k.a. post-acute infection syndrome, exists in people who were never COVID vaccinated. It exists in people who live in households filled with people who never received COVID vaccination. There are many people with Long COVID who have never even smelled a COVID vaccine, and they still have Long COVID. How do you explain that?
Thank you for making this video. I've been dealing with ME/CFS for about 8 years now. I've had to give up so many things I used to love doing, simply because I am so exhausted and in so much pain all the time. It took me a long time to accept that this was my life now. I still mourn the person I was before I developed ME/CFS. I hope that one day there will be more research done on this illness. Thank you again for talking about this.
This is so frustrating because it took decades for doctors to even start believing patients (it was pointed out that this is unclear, I’m referring to ME/CFS). Then you see someone you care about go through something like this and all you can do is think, WTF took the doctors so long? If they started researching ME/CFS decades ago, maybe we could have a treatment by now. I hope Dianna gets better soon.
@@alanjm1234 I’m referring to ME/CFS. This is a condition that appears to occur due to an infection. This condition was documented long ago but doctors thought that it wasn’t real and that people were putting it on. That or there was something else wrong with them. I believe it was only in 2018 that it was seen as a real disorder. ME/CFS resembles long COVID and may be the same disorder but I’m not sure obviously. If doctors had been researching ME/CFS, there might be a treatment for it and that treatment might be efficacious for long COVID.
The WHO declared ME/CFS to be a neurological disease in the 1960's but I went to a neurologist soon after my diagnosis in 2018 and he had no clue why I was there and asked if my psychiatrist referred me. I told him his database was just a tad out of date and maybe he should read up. There are people who have been housebound and bedbound for multiple decades with no relief. If you walk into my house, you can definitely tell I rely on my kids (17 and older) to clean. I really don't understand why they can't tell the difference between clinical depression as a cause and depression as a symptom. Just ask what they would do if they were cured tomorrow. ME/CFS people like me and Long Covid (Though I'm still convinced it's the same thing) suffers have a laundry list of things in our heads that we wish we could do. It's frustrating indeed.
@@TraceDominguez I've been sick for around 15 years now, it just sucks that something so huge like a pandemic had to happen for ME/CFS to be taken more seriously. A large part of that, I believe, is due to the condition disproportionately effecting women more than men, and as we know women have long history's of not being taken seriously by health professionals. There's a good film made a few years ago that's worth checking out, it's called Unrest (made by an ME/CFS sufferer). Any way hope some new answers and treatments come out soon, untill then we will wait, we have gotten very good at that ;) A massive thanks again, I wish more youtubers would talk about it.
I developed a type of dysautonomia called POTs (postural orthostatic tachycardia syndrome) after a mono infection some years ago. Watching more and more people get long COVID, the only hopeful thing to think was that maybe there will finally be more research on this issue. Thank you for this video.
Yeah, I have POTS as well. I really hope that this gets more attention from doctors and researchers to figure out what the can do to treat it. I can never get answers// help and I really hope that changes in the coming months or years.
If you have pots that was activated you might even have EDS, which is very commonly accompanied by pots.. are you bendy, flexible or "double jointed" too?
@dyln I was told I didn't for about five years, one doc told me "thats not even a real disorder" ... then I got genetic testing an whaddya know... yup. I do, and the genetics specialist told me so as he was drawing my blood for the test. He said "I believe you're in pain and we can help you"... life changing. I still have EDS, of course, and I still have pain, but now I can manage it and know that I'm not imagining things. Compression leggings help POTS symptoms so much, even just calf sleeves can make a difference. Be well!
I'm afraid "long Covid" has existed for longer than many people think. I got terribly sick with a viral infection of some kind a decade ago. These symptoms that are being described by the generation approximately 10 to 15 years younger than me who are going through this are exactly, and I mean EXACTLY what I experienced for years after becoming ill, obviously not with COVID back then. I did not want to move. I did not want to get out of bed. My head felt like it was in a vise all the time, and could not think, be productive as an electrical engineer at my job, or help to raise my children. I decided that I just wasn't going to let it get the best of me, and I powered through it. I continue to power through it every day, because that is in reality the only thing left I can do. Some days are good, some are just awful. But there was definitely damage done from that viral infection, in much the same way that COVID has impacted many others I'd imagine. My father told me he went through a similar thing in his 40's. Sometimes getting older is just that. You'll never be the same, but you can get through it. Best of luck to her, however I suggest that at some point she make attempts to start doing the same, otherwise depression and other highly degenerative diseases will likely set in for which recovery seems less and less likely. The world is sometimes a cruel place, I know. But I'm not holding out any hope that doctors will ever find a cure for this. Actual damage was done. Repairing that damage takes an enormous amount of physical strength, stamina and determination. But it can be done. I'm proof of that.
Same, I had mono nearly 20 years ago and developed an auto-immune disease and chronic fatigue as a result of it.. I'm 30 years old now and it's never gotten better, I'm still sick, i'm still tired constantly and battling an endless list of symptoms and I've never been able to hold a job because of it. On the one hand it's good that there is some more awareness but I don't want people to forget that many people have been suffering with this for years and years as the result of other viral infections.
My mom had the same thing caused by Lyme disease albeit after COVID-19 existed. Our doctors said DO NOT do this, because it will make it take longer to heal. You're supposed to basically be as lazy as possible for as long as possible to improve your odds of recovery, and pushing it will make it last longer.
This! I felt my blood boil when he started the video by saying this is something new, when it's well known and well established that people have had these kinds of reaction from viral infections for a long time. It's not new, the name we are calling it and the virus that we are focused on is new, but this kind of reaction after a viral infection is NOT new. What is new is that a lot more focus has been put on it and actual reasearch is going into it on a much larger scale, you might even get a doctor to take you seriously about it if it happens because of covid.
Oh yeah, and even in this comment section there are swarms of ignorant people with an agenda trying to blame it on vaccines, or blame it on making it up, or blame it on not eating right or exercising or taking enough vitamins. It's like watching the armchair experst when you mention having adhd, or my dad's fibroyalgia. Like "oh, you have no medical education and fix cars for a living? Well I guess you're the perfect person to solve this mysterious illness.
Nearly exaxlty 3 years on from catching covid and 2 1/2 of suffering through long covid. The worst isn't whatever is happening inside, it's the opposition you face from people
@Trace Dominguez don't be, it's part of being human on our evolution. Hopefully I'll be around awhile longer to see some good come of it all. Perhaps long covid sufferers and survivors will have access to breakthrough medical technology that extends their lives to what the general population is now, also paving the way for everyone access to these life extending miracles yet to be 🙏
Sad to see all the conspiracies and miracle cures in the comments. This was a really good overview on the condition and the lacking research on it though!
My 17 year old grandson has had long covid for over a year now. Unable to attend school in person or play on the varsity baseball team which he is passionate about. They just discovered that his chronic Lyme disease was complicating his long covid recovery. Recent treatments for Lyme have resulted in significant improvements in his long covid symptoms. This long video talks about diagnosis and treatment of long covid: ua-cam.com/video/cH-8hMXcE2U/v-deo.html
One of my friends who has long-covid had an MRI done of her brain. It showed holes in her frontal lobe from covid. She was literally bedridden like Dianna. If you are still suffering from long covid make sure your doctors order an MRI for you. It might help identify if you had brain damage.
I never got fever as a child, and when I became an adult then a mom, I started getting sick but only sometimes. Since I got COVID last Sept 2022, I am sick almost always. I’m like super tired all the time, no matter how much sleep or rest I get. :( Tests are always inconclusive.
Reading the comments disgusts me how medical gaslighting is too real. I pity all the patients who have these illnesses and accused by medical 'professionals' as simply psychosomatic.
Thank you for doing this video. I've lost family and friends to Covid-19 during the past few years, and I caretake for several family members who are medically vulnerable (I am too). I hope the more people understand, the better things will get out there. ❤
A year later, how about a follow up video? Has anything new been discovered? Does something like hyperbaric oxygen therapy help, by helping to create new stem cells like exercise does (but without the exercise)?
If you got the mandated medical treatment unfortunately you have 5 more years if you where within the 30% that got the real thing, the other 70% got lucky for now until the next lie...
Complete bullshit. The v has saved millions from hospitalization and death and continues to do so. Theres no increase in any health issues that may even remotely be connected to the v. Long Covid was a thing WELL before the v have even been introduced.
I was sick for yrs w Fibromyalgia before I was diagnosed (by a sharp Reumatoligis). Most doctors, including my own husband, thought it was psychosematic ('All in your head').Your advise was great! I would add, keep seeing different MD's until u find one like mine.😅
Thank you! As someone who has had long covid since 2020, we need healthy allies to advocate for us. Thank you for this great, informative video, and for helping our cause. 🙏💚🙏
Even if it is all in your head, it’s not like you can just pray it away. People need to get treatment for mental issues as well. Treatment to get people back to doing what they want to do is critical.
I had Wuhan COVID in Mar 2020. The ER I went to treated me for COPD as COVID wasn't even a thing yet. The one thing that puzzled them was a 103 degrees F temp when I arrived. Not really a COPD symptom. Got a long nebulizer treatment and was sent home with a TON of equipment and a new nebulizer. Nice of them. Blood work showed a virus, for sure. But they assumed I had a light bout of flu. The nebulizer worked well. Also, the fever broke that night and didn't return. By the end of April, I did notice a marked decrease in energy. Then I seemed OK for a few years. By 2022, I really knew I had issues. I got sick again, flu symptoms, and lost 22 pounds in 2 weeks -- seemed like it was mostly sweated off. Got tested, not COVID. Noticed that I was always weak and had a short "active" cycle before I had to lie down for a while. Very erratic sleep, typically just 2-3 hours at a time. Little appetite. Constant headache, been 4 months now. Ringing in ears. Night sweats. Oh.. am 133 pounds, 5 ft 7, and 75 years old. Pretty lean. Often my entire body aches, espec. knees and ankles and L3/L4 area. And, yes, really serious brain fog. I can't remember my freaking dogs name !! Glad he responds to "hey you, dog". Doubtful if it's ALL aging. Mom lived to 97 and was still walking every day. Good genes. I have an appointment at the VA Hosp soon. Wish me well... I may have to explain Long COVID to them....
I’m so sorry to hear this is happening to you and I really hope the doctors listen to you and can help you in someway. I have FND and it has been an unbelievable struggle to even figure out what was going on with me. I’ve seen every specialist out there and finally after 20+ years a neurological doctor apparently diagnosed me with FND about a year ago, but didn’t tell me and I only found out about my diagnosis a few months ago from my primary doctor and the first thing she said after telling me I have FND, is that what I’m experiencing is real and she said I really want to stress that this is real because so many doctors don’t think FND is a real thing. I couldn’t believe what I was hearing. I’m still really struggling everyday and I can’t understand how a doctor could diagnose someone with something but not actually tell the patient. So stay strong and don’t stop advocating for yourself. I really hope you get the care you deserve and some answers 💜💜💜
Well since you don’t personally know a person who has admitted their personal and private health information to you I guess it must be a fake thing. PACK IT UP BOYS
I only had fatigue 2-3 weeks after Covid. Can't imagine how it must be for Diana and all the other people around the world with the same problem. I hope there will be some relieve soon.
My mom spend years figuring out that she had MS here in the Netherlands. She now has medication that slows it down and it has been working for years luckily. Still often tired though.
Been dealing with it since 2020, the only relief I get in a flare up, Benadryl and melatonin combo, once a day. It feels like I’m having an allergic reaction until I take the meds, it works too
Thank you for explaining the difference between being tired and being fatigued. I'm disabled and often have severe fatigue with no obvious cause. It's hard to explain to people that being fatigued isn't the same as "you're just tired." Fatigue means I can't even get out of bed, but I'm not sick in the traditional sense.
i recall seeing data that indicated long covid or some of them was a mitochondrial disorder you already had before covid but was made worse with covid. i recall exposition to near infrared light helps fix the disorder, sources of those is sunlight and camp fires or fireplace without glass. might be other causes for long covid but if you were almost always indoors before might want to give the sun a try.
I had a mild case of COVID in April 2020, felt out of breath for a few weeks and a bit of gastrointestinal issues that didn't go away. Over the next few months my GI issues got worse, I felt exhausted all the time and things have got worse since. 3 years later, I am still suffering from severe GI issues (including blood) with no known reason (after multiple tests), exhaustion (a couple of hours exersion, even just mental and not physical, will leave me wiped out for days), severe pins and needles and numbness in my arms and legs, confusion (including not being able to think of simple words), autoimmune hepatitis, kidney issues, pancreas has given up producing digestive enzymes, almost zero vit D, folic acid and B12 levels in my blood tests, sleep issues, anxiety, panic attacks and generalised pain. As the last 3 years have gone on, I have been told multiple times that my symptoms were unrelated to C19, until more was known about it's effects and they're then recognised as symptoms of long COVID. I have finally been diagnosed with post-covid syndrome, and, as strange as it sounds, just having a diagnosis is a relief. Just as every positive test result was a relief as it gave me something to prove that there was something wrong with me. I am unable to work, I have given up my company, my life is so limited now, but mentally I feel fortunate, I might only have one 'good' day a week, but it feels so good and I make the most of it and try to appreciate everything life has to give for that day. I feel devastated for Dianna and everyone else that has it even worse than me. I am so glad that people are talking about this, it makes me feel slightly less alone.
I've been having issues after having Covid nearly two years ago. I still have issues with being very fatigued. Some days are better than others, but it can hit me out of nowhere and all of a sudden I'm struggling just to function throughout the day. Thank you so much for covering this. Sometimes just doing BASIC things makes me so freaking tired. I could sleep for days and still feel like I didn't get enough rest. I also developed an issue with my heart that I didn't have before Covid. It's frustrating to get people to understand how it feels and I get so frustrated when I get called lazy. I would love to be able to do the things I used to be able to do.
Please discuss Red Light Therapy and how it treats this. Medcram covered academic studies showing infrared light reducing COVID inflammation, and anecdotally, the panels commercially available mostly appropriate the effects of the lower frequency devices in the studies.
Thanks for raising the profile of this, folk desperately need relatively-healthy people to advocate for them. It's hell on earth, and you just dissappear, so no one sees you.
Wow exactually what I have been saying. If they would have listened to us in the 1980s during the large numbers that complained of symptoms. They could have helped during the Incline Village outbreak when many of us became sick. I contracted in 1985/ 1988 after being in good health up til age 35 to 38. We were laughed at made fun of and thrown under the bus. So now more people are left to suffer like us. Been 30 years for myself and many others.
It’s so unbelievably frustrating, if not outright enraging that doctors are STILL intentionally labeling patients as crazy, lying, or exaggerating their symptoms when they encounter a patient with an Illness/disease/syndrome that they don’t recognize or understand… Why do doctors repeatedly keep failing patients again and again like this… It’s not like this is the first time doctors have been caught treating patients like liars, instead of understanding that they don’t know everything, and most patients want nothing but to get treatment for their illnesses that doctors cannot seem to ever take seriously… Stop making such childish and repeated mistakes, and quit blaming patients, and start recognizing your own ignorance and limitations! Doctors please stop placing blame on your patients, and making them feel like it’s somehow all their own fault! This same situation happens over and over again, where doctors would rather blame their patients than admit to their own limitations/ignorance… Just stop you muppets! Many doctors seem to have no ability to be empathetic, and fail to notice/care about the consequences of their words and actions on vulnerable patients…
Really good video. I know people similarly affected by Long COVID and I can't understand how so many people are now so blasé about COVID. A collective, selfish wilful forgetfulness... As you say, just because someone might have had no lasting symptoms the first one, two, even three times they caught COVID, does not mean that they won't possibly be wiped out by the virus given a future mutation. Or that even if they don't have it so bad, and aren't immediately symptomatic, they can still pass it on to someone who becomes significantly ill and gets Long COVID, as happened to my partner at work. I also remember a couple of friends at school, one of whom who had ME so severe she had to be carried between lessons for several weeks before she finally was allowed to stay home sick. ME/CFS and Long COVID research seems similar to research into endometriosis - as it doesn't affect the majority of people with the power to investigate, raise funds and conduct research, or in some cases doesn't affect doctors who then don't take their patients seriously, so it remains underfunded and underscrutinised. This is one of a few important videos on this topic which I hope makes people think again about this condition. Thanks for making it. Like others I'm continuing to keep everything crossed for Dianna and everyone who has ME/CFS and Long COVID. Hopefully we can lay the smackdown on these debilitating illnesses reasonably soon. P.S. - subtitles towards the end should say "fire on all cylinders", not "fight on all cylinders". 🙂
@@TraceDominguez I know! I keep seeing them going after people saying they have it with a million "have you just tried X" or "Oh but maybe it was caused by the vaccine that didn't exist yet when you got it!? HmmmmmmmmmmmMMMMMM??" Infuriating.
My life is ruined from 18 months, after 2nd dose of pfizer... Same syntoms of long covid... Was really fit, a gym maniac and healthy... Now Every day pain...issues everywhere.. Muscle, tendons, gut, stomach, reflux, issues on skin,neuropathy...
As someone who has suffered from long Covid fatigue for almost two years the only solution I found was to build up slowly. Do enough each day to tax the system but don't ever do it. I have really had to push myself to get through this. Thankfully I am almost in the clear. This is my experience and I understand each experience seems to be different but this might help someone.
This has zero to do with any vaccine. The vaccine does not cause Covid symptoms. It reduces them greatly. Almost all people suffering from long Covid or severe Covid are entirely unvaccinated. There is zero increase in any health issues that may even remotely be connected to the vaccines
@@safeeffective385 the vaccines have been developed by medical professionals like any other vaccine and they are effective like any other vaccine. Maybe even more effective. Almost all people suffering from long Covid or severe Covid are entirely unvaccinated
Thanks Trace that was very informative. 11:08 It's also comforting to hear that one of my favorite content creator for years has ADHD, since I just discovered as an adult (41 years old) that I do as well, and only realize the extensive impact it had on my life so far. I'd like to request an episode on ADHD! Including if that's not too personal, how you manage the uncertainty and stress of your job, emotional dysregulation / RSD in relationships and being a dad. I would make use of all that info and it would mean a lot too ❤
Unfortunately I'm one of the unlucky to have long COVID. It went from not being able to concentrate or focus properly, to not being able to lift slightly heavy objects or take a walk around the block, and at it's worst I couldn't even brush my hair without my arm just giving out. I wouldn't wish this on anyone. Its driving my nuts, I'm 30 frickin years old and my grandma has more of an active life than me.
Food can heal. What we eat matters. Stuff yourselves with clean fruits and vegetables. Not saying it’s the answer to long Covid, but it’s changed my life with my autoimmune disorder.
As someone with ME/CFS, PEM is the worst. I can do something today, won't feel the crash for 2 days, then might have symptoms of that crash for up to or over 3 weeks.
Doing NMN for a bit over a year, after trying Niacin (didn’t do much apart from the flushes). It’s extremely powerful…if you buy a real pure product. Amazon finally stopped selling them, because ALL of them were fake. Check some videos on UA-cam to find the few trustworthy producers.
As a person with brain damage from a stroke i know PEM, and it took me years to learn how to pace myself. It is very hard for your brain to re-learn what you can and can't do. Like i know what my energy levels are and how much i can cope with, but still sometimes my brain will say 'you used to be able to do this much, so just do it now' and i will Pay the price the following days. So big hug to those affected, you will someday learn to cope ❤️
@@KA-in6sx Why? I want to find out, because Long Covid is a vague term that matches well with the adverse events of the vaccines. I mean all the excess mortality and rise in strokes, myocarditis, thrombosis and misscariages have a reason and it is sad that people put it on 'long covid'.
I think that long covid, fibro, chronic fatigue, and other similar "vague symptom illnesses" are all versions of the same thing. Put another way, they are not all chocolate ice cream, but they are all some flavor of ice cream. They all seem to appear after some sort of viral infection.
There’s an organization called The FLCCC (Front Line COVID-19 Critical Care Alliance) that specializes in helping patients struggling with long covid and those who are vaccine injured. My sister had long covid and experienced many of the symptoms you described. The FLCCC protocols helped my sister feel better and now she’s almost back to 100%. It may be worth looking into to see if their protocols are a good fit for you. Best of luck to you!
having long covid; besides the fight with our own body a very unhelpfull and annoing fact are all those doctors/specialist that simply wont believe us assif we are faking it... also ive noticed that allot of those specialists try to help you with their standard routine and when it doesnt help you they also go into denial mode... pfff ego's... meanwhile we seem to be alone and noone understands what we are going through... to a point that if i wouldnt have my kids and family to live for i would have ended it a long time ago allready. Just my honest two cents.
I'm glad you're calling out the medical profession about hearing them out patients and validating them. The profession can only gain trust where the sense of pride and arrogance is set aside.
Trace, while I am fortunate to not have long COVID, I am now the proud owner of two immune system disorders - both relatively rare - Neuro Myelitis Optica Spectrum Disorder (NMOSD) and Sjögrens Syndrome. I am very lucky that there is Satralizumab, an extremely expensive immunosuppressant, that prevents my immune system from dissolving my optic nerves, but I’ll have to take this medication every month for the rest of my life. I cannot travel, I cannot go out to public places, I have to double mask whenever I leave my apartment and live in a constant state of extreme stress. Seeing folks suffering even worse than myself, I can only hope that all of the attention being brought will help fund the necessary research for a treatment, if not a cure, sooner than later. Thank you for helping bring attention to this for both those like Diana, and especially those suffering without a voice.
I'm Japanese and I just found your comment. I am suffering from long, and MDA5 dermatomyositis by COVID. Now the Japanese think COVID is over, many people in Japan are taking off their masks. Some people treat me badly because I wear KN95s. Is it the same in the UK?
It just makes me feel crazy that I'll see videos like this and almost everyone has moved on like there is nothing wrong. It really shocked me how quickly the whole country was kind like welp done with this.
Mass denial basically, most people cannot handle the idea of something this disrupting, and go on a path of complete denial, going as far as just pretending everything is ok, and atacking those who have LC and the people who believe its an issue. Just have to take a gander at comment section as to how vile some people can be regarding that.
I just feel that “Long CoVID” is a recent definition for something that society has grappled with for a long time. First in the 80’s, it was “Yuppie ‘Flu”; in the 90’s, it was ME/CFS; in the 2000’s/2010’s, it was fibromyalgia, and now in the 2020’s, it’s called Long CoVID. I can promise you it’s real - I have the Fibromyalgia version of it. I caught a winter ‘flu, and my body just never got better. I have a background in pharmacology, so I have my own theories as to the pathophysiology and location. But I refuse to believe I will never get better - the alternative is horrifying and not a life worth living.
@@cmthomas07how does Long Covid almost exclusively hit unvaccinated people then? How do you explain the fact that Long Covid was around WELL before the vaccines have even been introduced
I belong to another group that are severely underdiagnosed in this way. People with autism often deal with chronic exhaustion, and healthcare is *so* bad that our average life expectancy is *12 years* lower than average! And this is in the "developed world". I regularly need doctors and nurses that have no clue what they are doing and I can't tell them they are wrong because I am never believed due to my Autism diagnosis. It is hell when you can't live up to expectations and at the same time get no help.
Three obvious questions you didn't ask the expert: 1. What is the correlation between long COVID and the past and present variants? (maybe the current mild strains pose far less risk.) 2. Is there evidence that receiving a mRNA vaccine reduces the probability or severity of long COVID? 3. Is there evidence that receiving a mRNA vaccine increases the probability or severity of long COVID?
You dont need an expert opinion for this. Its obvious just from statistics that almost all people who are getting hit hard by Long Covid or severe Covid are unvaccinated. Doctors and nurses will always confirm that.
I'm glad more information on this is becoming known. There are a lot of people silently suffering with this, and have had a difficult time getting ANY help from medical professionals... and as someone with other medical issues, has made it an absolute nightmare to deal with. Like.... it's been soul crushing to go through, and even more soul crushing to see so many others go through it without support.
Really been missing your friend’s face lately. Glad you took the time to do this video about her. Hope she gets better soon cause the world needs physics girl!!! ❤❤❤
Something about getting older that I wish I'd been warned about is that you won't always get back to 100% after an injury or illness. When I was a kid I'd get sick or break a bone, but after recovery I'd be good as new. Now when I hurt myself I still get better, but sometimes not all the way. There's a kind of cumulative battle damage over the decades - sure my knee still works, but not as well as it did when I was 25 - and that has me hoping that one day I can trade this body in for a newer model.
Yeaaahhhhhh I know that feeling
As a young man I thought I had to prove myself so I volunteered for missions that I shouldn’t have. I wasn’t a SEAL but most of the people I worked with were Navy SEALs. I did things to my body that hurt me and 45 years later I feel every little bit of those injuries.
Trust me kiddo.... It only gets worse.
I think that really depends on how well you recover, your level of immunity, genes, food choices etc. And I’m saying that age 66, after cancer surgery and 6 months of chemo that ended 6 years ago. There is no need to settle for less than before, you need to restore your level of activity (i played squash even during chemo, as i was more or less functional one week out of two), review and change if necessary your food choices (i went to low-carb after a few trials and errors, significantly reducing bread, pasta and hidden sugar), even walking more is a good activity both for the body and the brain. Get regular blood tests and check your progress, but don’t consider that you can never restore your previous level, or even improve on it. There are many supplements that can restore mitochondrial functions and other important metrics of your health.
You set the bar too high as a child. Now that I'm entering the 4th decade and finally starting to take care of myself, I feel better than ever. My teens don't have anything on me now. Except being able to fall asleep whenever/where-ever.
I know someone who got ME after a flu infection in the 90s. To this day they are still affected with no support or understanding from Doctors.
I got ME after several pneumonia infections during 2013. I'm doing much better, but I can't do more than just work. I crash everyday after work. I miss doing things.
I’m so sorry for both of you 💙 I hope there’s more information soon!
@@TraceDominguez Thanks! When news started coming out about Long Covid we both thought the symptoms sounded the same. It gave a bit of hope that doctors would see the same pattern in ME patients. It's like you said, they are noticing but still a long way off being accepted fully.
Great you're raising awareness!
Yep, everyone was focused on Y2K in 1999, I got a flu at Christmas in 1999 and it never went away. ME/CFS roller coaster ever since. 😐
Dr. Raymond Perrin, M.D. - A Proven Neurolymphatic ME/CFS Recovery Method ua-cam.com/video/dDrJajg2ZII/v-deo.html
Dianna's circle are some of the only people I see stepping up to talk about this and do it well. Your video makes it very clear how many people are suffering with these things and so few people are out here showing the world what it actually is and looks like. I really appreciate that. I hope one day we can hear it from Dianna herself, but all of you taking it on yourselves to be her voice and the voice of so many without platforms or energy is really important. Thank you for believing and taking a stand.
That's because Dianna is vaxxed, and has probably the worst diet imaginable for a human being.
@@CazaDeYork stop trying to judge peoples life on the internet to fit your narrative you freak touch grass
Having support is KEY. We all need to circle eachother. Theres not nearly enough support for many of us.
Those of us who have had ME/CFS for decades are SO HEARTENED that this circle (and ol' Hank Green) are actually talking about this!
@@sparklesparklesparkle6318 did you notice the pandemic just 'went away' no more 'new even more virulent' mutations every week. Seems it went away the moment the Ukraine Russia conflict started
Thank you.
I have been dealing with long covid for 13 months now, with no reduction in symptoms.
A member of my care team recommended this video to me during a session today and it explains things better than I have been able to so I am directing everyone I know to watch it to explain what I and millions of others are dealing with.
I've been 8 months with no income now because my medical insurance doesn't believe anything is wrong with me, and the stress of trying to deal with it is exhausting, so thank you.
B12+B2, etc...
@@The_Green_Man_OAP Believe me, I am taking all of the supplements and superfoods that my treatment team have recommended, and so much more, I won't say it's not helping, but it's not a cure either.
long vaccine = LonG COviD
Terrible
@@The_Green_Man_OAPno quick fix
I'm 3 years into CFS. This condition takes everything from you, and the worst part is nobody knows because nobody can see you. Sometimes I wonder if I'm still human or if I'm actually dead. Doctors don't seem to care either way.
ive had long covid for about 2 years now. A couple of things.... Look up Dr. Jack Kruse but I would also heavely recomend medicinal mushrooms, I use cordyceps, lions mane and reishi. NAC helped a lot as well as quercitin. These things enabled me to actually lift some weights which if done in a specific way will cause the epicenetic expression to slowly revert to normal, at least in my case of long covid. Sad to hear this from you, Ill be happy to elaborate
@@DiaboloSnipEzhi, thx for the info. I’m a 16 month long covid sufferer here with fatigue, gut issues, hypoglycaemia which didn’t exist before and chest pains.
I’m currently on quercetin and vitamin D3, zinc, magnesium statin for excess lipid issues post covid. Tried NAC but didn’t solve my problem.
Please advise whether you take all three medicinal mushrooms that you mentioned in combination or separately and how many times a day and whether in the morning or evening. I had no comorbidities before covid.
Thanks.
From the bottom of my heart: THANK YOU for making this video. It's been so difficult to explain to some people what exactly is going on with me.
I’m sorry it’s happening to you. I hope we find treatment soon
Methylene Blue
Same with me. Last month I needed to get admitted in hospital
Long COVID virtually same symptoms as ME, or CFS, Chronic Fatigue Syndrome. ME and CFS have been around since the mid 80,s, remember ,,Yuppie Flu,,. ? Nothing to do with vaccines. Mostly a result of having had a nasty viral infection, EG Flu, Kidney viral infections, and so on. The mitochondria in cells are damaged permanently, and don't recover. For some, CFS has become a life long condition,. Not enough known about CFS, and not enough research. Now with Long COVID, MAYbe more money for research into both. 🤞🤞
People are healing using neuroplasticity exercises (look up "brain retraining" programs such as Gupta, DNRS, ANS Rewire, CFS School...) These programs are rewiring our brain to help regulate our limbic system. Also, the podcast "the chronic comeback" has dozens of testimonies from people who recovered from fibro / CFS/ Lyme etc.
Thanks for this video. I'm in England, I've had M.E. for 40 years now. Doctors are still not taught about it in medical school and patients continue to be abused by doctors, they are disbelieved and told they're not trying hard enough. I wish they could have seen us before we became ill. No one chooses to live like this. Its not living, it's a living death. And so far it's been totally ignored.
I’m so sorry. ME is horribly under researched and I’m hoping to eventually do my PhD research on it
Ignored just like use of anti-virals were. Ignored like Vax side-effects.
Have you tried the ArtemiC Combo?
ua-cam.com/video/CxibS0mPRO4/v-deo.html
@@stevesherman1743 Unfortunately true 😔
How many lives and livelihoods could have been saved if pharmaceutical companies and the doctors on their payroll within highly developed nations hadn't done everything in their power to fight against the use of the least profitable and most effective COVID prophylactics and treatments available to us?
@@reeceb1259 sorry, what are these treatments you are talking about?
Thank you for this! Excellent info as always! My wife has Fibromyalgia and so many doctors simply treated her as if she was crazy. She still is poorly treated. "Believe the patients" is one of the more powerful things you said. Thank you for doing this.
I hope your wife is believed! I believe her!
@@TraceDominguez thank you Trace!!! ❤️❤️❤️
My mum had this. They were doing all sorts of trials at the time and she had a lot! The ones that brought the most relief was acupuncture but it didn't cure it. The trials ended after a couple of years and she was still no better. After five years it just went away on its own. Such a strange condition but there is hope that it can just go.
I have fibromyalgia and now have long covid .It took me 25 years to be diagnosed with fibro.
@@autisticautumn7379 I'm so sorry Autumn 😪 I hope you are getting help now!!
40 years ago I got Glandular Fever. It came to Australia via the US teachers. I had been extremely fit but when I caught glandular fever things went backwards in weeks. It took ten years to recover. And yes I contemplated suicide many times. Initially the doc couldn't find any functional white blood cells so he told me to take my tent to the river and avoid people at all costs. But that was only the beginning. From being extremely fit I found I couldn't walk even 60 metres without stopping and sitting and puffing for some minutes. On Friday I would get home from work, have a bite to eat, then go to sleep. I wouldn't wake up for more than a day. Typically I would wake up about midday Sunday. After several years I had recovered enough to do some exercise. But I paid a price. Each day after exercise I would sleep a LOT longer than the day before. It was horrible. The doc suggested that it would take five years but it took a lot longer to be back to "normal". 12 years after the infection I walked through Nepal to Everest base camp in mid winter. Which was a demonstration that I had finally come out the other side and could start to regain fitness.
Now that I am in my seventies I am back to being fit. I can ride my bike at speed for 50 to 100 km each day. Then come in with sufficient energy to spend a few hours digging weeds on my farm. Then take my dog for a run for a couple of km. But in my thirties as a result of that glandular fever forget it. I was a mess. So I am terribly scared of long covid. I may not live long enough to ever be good again.
Keep the faith❤
Thank you for sharing your story. It's always good to be reminded that some people do recover.
12 years! I’m 4.5 years in and about one half recovered. You and your story give me hope. Thank you.
Thank you so much! This gave me hope that I’ll be able to run and play music again❤️
Doctors should be sending these patients for more testing instead of dismissing patients and protecting the spending accounts of governments.
My partner had/has long covid, but has made a lot of progress. We think her progress is attributed to the restrictive, anti-inflammatory AIP diet she's stuck to long term (with some carefully chosen re-introductions). 3 years ago, she couldn't walk 50ft without being exhausted. Yesterday she completed nursing school.
Tell her congratulations from me. Also as RN of 39 yrs before disabled, be zealous of your health. I have been pushed to work exhausted, sick, with short time off from surgery and guilted into huge patient loads where got hurt by having to lift heavy weights. Never stop reading, know the labor laws in your state, never stop caring about patients. Good luck
Was it Brooke Goldner's protocol?
That's crazy. Tell her congratulations!
Spontaneous recovery is possible she probably just got better on her own it probably had nothing to do with the diet.
@@Fizzypopization everything has to do with diet. some things are really not good for anyone but they sell it in a walmart. food is our fuel. of course is going to matter what you eat.
Thank you for this, to see people outside of the ME/CFS community using their platform to raise awareness is really great. There's some really exciting work being done by researchers like Bhupesh Prusty and Ron Davis, but they desperately need more funding.
funding is a serious thing!
Dr. Raymond Perrin, M.D. - A Proven Neurolymphatic ME/CFS Recovery Method ua-cam.com/video/dDrJajg2ZII/v-deo.html
Dr Mobeen Saeed, FLCCC also doing tremendous work on long covid.
I'm 3 years into having long covid. It's devastating the effect it has had on my life.
same. and I am slowly getting worse.
Long COVID or vaccine damage?
*hug* I hope you are well one day.
@@nyxbellatrix011 that is exactly what I was thinking. Maybe someone will eventually come clean about the so called vaccine and it's damage with not really any benefit to people who have taken it. I am a veteran and was in the VA ER last year for other issues and the nurse that I had says he and most of his coworkers have had covid 2-3 times. All have had every vaccine, boosters and whatnot, wear a mandatory mask and they still have gotten covid more than once. Obviously the CDC rewording what is a vaccine didn't keep these people from contacting it multiple times.
ua-cam.com/video/TiWjleODn4M/v-deo.html
5:49 I feel that hardcore. My Mom has fibromyalgia, another disease doctors say "doesn't exist" and is "all in your head". She's practically bed ridden and here in the state of GA we went to court to show that there was a 0% possibility of her working and she had FIVE different doctors sign off and 2 testify and they STILL denied her disability because fibromyalgia is "something the doctors tell you you have when they can't find the real reason".
That sounds like its time to appeal upwards, they didnt even deny shes disabled in their deny which they have to prove
Hope she reapplies. Took me a few tries to get approved for disability. I got sick after a booster shot in 2001.
@@sharrpshooter1I agree that it's time to appeal. I have CFS and was denied on my first try. I had a roommate sign a witness statement detailing symptoms that were visible to him and submitted it along with a request for reconsideration (which occurs prior to an Appeal). Luckily, my SSDI was approved at that stage, thereby sparing me the appeals process.
The process is tedious, but persistence should pay off eventually.
Psychosomatic diseases are a thing. The symptoms are real, but there is no underlying real disease. Psychical diseases have real, physical markers to diagnose them. The body is complex, but not that complex. The brain, on the other hand.. still effectively a black box of mystery. Therapy is the only path to curing psychosomatic illness. We don't have a medicine that can cause someone to believe that their illness is in their head and that they are capable of overcoming it. Thus far, only they can do that, themselves.
@@rosalindr4975 2001?
My aunt has been struggling with ME/CFS for over 25 years and she's been looking for answers the entire time. It's only in the past few years that it feels like real work is being done on the syndrome.
Same thing for my wife, with CFIDS. She's had it for 5 years now. It's been extremely frustrating to see that there is basically NOTHING to be done. She has come a long way, but is still far from fully recovered. I really feel for your aunt, having had it for 25 years. That is so sad and I'm frustrated for her.
@@mark7166 have yall tried cordyceps mushroom? helps a lot with my long covid situation. lionsmane helps a bit mentally too. These might be basic and there are more options to try that I personally use but i thought ill ask
Nicotine. Use 7 mg patches. It works. Do a deep dive research
@@JackSparrow-nq5wh nicotine has recently cought my attention. be looking into it
you don’t survive for for 25 years with the condition that she has
Once you lose your ADLs 2-5 years max
I had mild covid the third time I had covid. I have long covid and it’s a struggle, no where near as bad as Diana.
I have lung pain, brain fog, headaches, insomnia, shortness of breath and constantly feeling nauseous and my doctor says there’s nothing wrong with me.
I’m sorry this is happening to you :(
Wim Hoff breathing method. Give it a try. You might be surprised.
Try anti acids your story sounds EXACTLY LIKE Mine, it took a week to see the difference use a strong one like 40mg.
Good luck!
The thing that absolutely breaks my heart every time is when I see people commenting, get well soon! Or, I hope you feel better soon! Or worse when the person themselves says hopefully I will be back to my normal self in no time. I don't deal with any chronic illnesses, but I am good friends with several people who do, and it's heartbreaking to watch the General Public be confronted with the reality of chronic illness for the first time. There's no getting better, there's just management. There's the hope that the good days will exceed the bad days, but the bad days are not going to stop. There is no back to normal.
There is no “back to normal” is the toughest part for people to understand. The narrative from movies and tv has normalized that feeling, but there is no narrative in real life.
I feel this 😅
I wish I could encourage them to get sunlight exposure, drink cherry tea, have about five pieces of real licorice candy (Pontefract cakes or Haribo Salinos), and at least one small bowl of kimchi. Most people would find that too complicated or unpalatable but this really works largely by restoring your microbiome.
Another hideous man made disease. Hold those accountable for the weaponization of the spike protein or give it up.
@@zeideerskine3462 I wish I could get people like you to realize that there is no magic cure and these people have tried everything. You suggest this, everyone and their uncle has a different set of obscure suggestions. It really isn't helpful.
My father has stopped telling people he has Fibromyalgia and just says he's retired because he got so sick and tired of all the backseat medical professionals.
Thank you so much for this video, Trace. Would you consider a long term commitment to mecfs/LC advocacy? I've had ME for 17 years (if not longer). This community desperately needs able-bodied (and charismatic ☺) advocates.
🤗
“Trust the science.”
Excellent video explanation! 🙂👍 (As someone with ME/CFS for over a decade.)
Let's throw Fibromyalgia in there too. I developed it after I had extensive back surgery in 2008, by 2016 I could no longer work. I'm only now starting to be able to minimally manage pain symptoms, but the fatigue is truly debilitating and traumatic for not only me, but the people who care for me. I've lost so many relationships simply because I can't maintain them.
@@KA-in6sx My sister has Fibromyalgia and I have ME/CFS. We compare symptoms all the time and yeah that's pretty much the difference. For her the pain is worse, for me the fatigue is worse and I really wish someone would get rid of the cicadas. She doesn't have that particular symptom, my tinnitus is constant and can get pretty loud. Luckily she's already been through the gauntlet here and made sure I had the name of her rheumatologist 😊
Toss Hashimoto's Thyroiditis into that same boat. I enjoy the wonders of feeling like I ran a marathon for several days if I just do a modest amount of physical work past my daily limit which seems to vary like the weather lol. Basically, 5 hours movement/10k steps practically guarantee a 3 day bout of muscle aches and other issues.
You can throw in many diseases. Dementia, alzheimer's, schizophrenia, various thyroid conditions, bi-polar disorder, parkinson's disease, MS, ALS, rheumatoid arthritis are all diseases with a considerable amount of overlapping symptoms and all of them have been hugely neglected by the medical community or the research is biased towards outdated theories.
They all can be triggered by infections if immuno-genetic subceptibility/vulnerability is present. And there have been accounts of people who got cured or cured themselves following unorthodox therapies. (mostly doing genetic testing and then trying to fix the genetic problem via supplementation or drugs)
Or by eliminating potential immunologic triggers (gut microbes, latent infections, reactivated infections).
I have this. It's ruined so much of my life. It took 7 years to get diagnosed because doctors didn't believe me. I've been basically homeless ( a friend in a different state took me in) I work in the food industry so it's tough work. I don't have a choice. It's nuts
I wish I had something better to say about this but all I can think of is how sad I am for people who have had the person they were taken away and left with a broken shell of a body.
I hear you brother
I have the exact same symptoms, from the same strain of Covid. Thank you for bringing up mental fatigue. I can no longer read a paragraph without wanting to fall asleep
Have you tried the ArtemiC Combo?
ua-cam.com/video/CxibS0mPRO4/v-deo.html
Reading a paragraph makes you so tired you want to sleep? Commenting on UA-cam videos must be high on your priority list
Did you get the vax?
Yes you can.
@@CazaDeYork
Irrelevant? They already got long covid, vaccines won‘t help with that
I really hope that Dianna will get better. i miss her videos. And even if she will not be able to make videos (i hope she will eventually) i wish her well. To all others who have long covid. i wish you well too.
As someone with ME/CFS I appreciate that you are spreading awareness about the illness. For years I’ve had doctors who don’t understand my struggles because the are unfamiliar with ME/CFS. Hopefully the medical community will begin to do more research and find a cure rather than just having medications to treat symptoms.
FMT is the treatment. google.
@@KristinaApplegate Thank you for your message! After googling and reading several journals and blog posts it appears that the efficacy of FMT in ME/CFS patients is mixed and is not currently recommended as a treatment. (Though it may help if you suffer from IBS with ME/CFS. I used to, but found another treatment that worked for me called Linzess. It's a pill that is supposed to treat symptoms of IBS but it made mine go away for some reason.)
I'm so glad you addressed this. After infection from the original strain, I've had multi-organ affects. I can sleep for hours... and still be tired. I have to really force myself to get up and do something, and more times often than not, take a 4-hour nap.. only to feel disgusted with myself and my body.
i'm so sorry :((((
Were you vaxxed with the mRNA injection?
@@seaofcronos675 Not when I caught covid. Then as vaccinations came out, I seriously considered both arguments, and decided to get "vaxxed" against stupidity.
@@ursaltydog did you get shots for corona virus also?
@@darrenvail8726 Yes, Darren. After nearly dying with the original covid-19. Once the vaccines became available. I've caught it since then, but not as badly, thank goodness.
I've had debilitating chronic fatigue and mobility problems ever since getting a series of really bad flu infections back in the 1980s. It's nice that now these things are being researched more intensely and taken more seriously. I've been kicked out of so many doctors offices, being treated like a faker or like I'm just trying to get drugs. I've seen some recent, very preliminary work that hypothesizes that both long covid and chronic fatigue might have symptoms caused by chronic acid-base imbalance, making blood more acidic, which could explain why we're stuck with constant, intense muscle aches like we've been running a marathon. If doctors find effective treatments for long covid, it will help *a lot more people* with chronic fatigue as well, from previous epidemics.
Thanks for sharing. I’m sorry this has happened to you for so long
Did you take flue vaccines, like influenza?
Same, since 1989. I severely worsened 8 years ago after a flu shot went wrong. I was working full time prior to that, over a week I deteriorated to severe and mostly bedridden and or housebound. I’m lucky I can still write and read, but I can’t do much more than 20 to 30 minutes at the time without having an hour break in between.
but the worst part is the fever like symptoms. Influenza like symptoms and hangover like symptoms altogether.
@@nyoodmono4681 I'm not the one you're talking to, but allow me to comment. I've had MECFS for 14 years and have never had a vaccine of any kind. How do I know it's MECFS? I know because my symptoms match the symptoms that most MECFS sufferers have, including post exertional malaise.
Thanks for making this video, Trace. I've been a fan of Diana for years and it's been heartbreaking watching what has happened to her. I hope science has a solution for long covid soon.
I hope so tooo
❤
Havent you tried the ArtemiC Combo?
ua-cam.com/video/CxibS0mPRO4/v-deo.html
More people need to be aware about ME/CFS.
Including Doctors.
The lowest Quality of life illness with the least funding - especially when compared to other illnesses and the prevalence of 1.3%.
Why has it taken Covid for people suffering with ME to be heard.
Who knows, but we need answers and treatment asap. People are suiciding daily. You just cant live with these symptoms and be bedridden 24/7. Not only is that the new life, but there is also no hope unlike many other illnesses adequately funded
I was hit with a double whammy of sorts. I had shingles twice last year in the spring and then caught covid in the fall, and it did me in. I spent so long trying to protect myself from it and it still happened.
It's hard trying to explain to my family and friends how PEM works and how I can totally do the thing they want me to join in on. But that's because they don't see me in bed needing to be fed by my husband for days afterwards. Nobody wants to see their friends sick, it's traumatic and everybody feels helpless. I get it.
If you have a friend with mecfs or long covid, ask what you can do as a friend to be there for them. Offer to fold laundry. (My arm strength is zero now and if I hold them above my chest ill eventually faint) bring a movie and snacks over and explain that you don't have to talk you can just be there for them.
Everybody is different. listen to your friends. Ask how you can help. Don't give advice unless they ask for it. Just listen.
Did you get the vax?
I’m very sorry to hear of your situation. I’ve been living with ME/CFS for 30 years, it took way too many years (even decades) to be checked for the autonomic dysfunction/dysautonomia/ orthostatic intolerance/POTS/hypotension umbrella discussed in this video. I only mention this because once I received this diagnosis, it was explained to me that this is what causes holding my arms up leading to fainting. This is at least one of the comorbidities that does have some treatments available that can alleviate the symptoms a little and improve my capacity. Trying to make a bed with all the lifting up of sheets and covers though … forget it! But at least I faint on the bed ;)
I researched my local POTS/DYSAUTONOMIA online groups to seek advice on the most respected cardiologists working in this field in my area, I have no doubt this saved me a great deal of money, time and energy. He was able to diagnose me quickly and start me on treatments immediately.
I wish you luck and all the best on your journey ahead, I hope you find a way back to good health.
@@safeeffective385 bit confused, is your comment directed at me?
@@batubop651 you might want too research a guy called Dr. Jack Kruse. The guy likes sunlight more than you could imagine. If you dont already know him that is.
I really REALLY appreciate this video. It’s well done, and as someone with long COVID…yeah this means a lot. Thank you.
thanks Clara! I hope you're doing well
Thank you for raising awareness about this. It is maddening watching people totally disregard it.
Thanks for watching it
Thanks Trace, that was a pretty good overview of the issue. Tens of thousands of us with prior ME/CFS warned about this from the start, there is no question that we would be further ahead if we had been listened to, far more so if it had happened decades ago. All the same old mistakes are being repeated exactly the same way, with very little institutional support or interest.
All of this was a choice, psychosomatic medicine is a weird obsession in the profession, a tradition that can't be left in the dustbin as it should. It's belief in psychosomatics that blocked everything and still does. Those beliefs are very powerful, and have decades of tradition behind them. We badly need people to denounce how wrong this is. If only we had been listened to. Peptic ulcers should have been the end of this, but no lesson was learned and this trolley just keep crashing into millions of lives.
So glad you thought it was a pretty good overview! The more I looked the more I found. There’s a ton of information out there scattered all over the place!
Dr. Raymond Perrin, M.D. - A Proven Neurolymphatic ME/CFS Recovery Method ua-cam.com/video/dDrJajg2ZII/v-deo.html
You need to bear in mind that we are talking about a profession that took 40 years to acknowledge that washing ones hands before childbirth or a surgical intervention, "was a good idea".
We are talking about people who have so much difficulty questioning their knowledge that they prefer to deform reality than accept they might be wrong.
The fact that you don't even consider that it might be the experimental mRNA jabs is embarrassing.
The fact that you dont accept the fact that the vaccine DOES NOT CAUSE Covid symptoms like these is embarassing. It reduces them greatly. The vaccines also are everything but experimental. They have all gone through the full three stage testing that any other vaccine goes through. It does NOT take years to develop a vaccine. What took years in the past was discussions about money that have cost many lives. There is zero increase in any health issues that may even remotely be connected to the vaccines. Almost all people suffering from long Covid or severe Covid are entirely unvaccinated
@@metalpuppet5798 There you are again. Medical Misinformation Puppet.
I always say one should restrict Long Covid searches to 2020 before vaccines to know it as an issue even then.
Just an FYI: Long Covid was an issue long before the vaccine roll-out (the term was first used - hashtagged- in May 2020 to refer to "long haulers" suffering extended symptoms)
Very impressive for vaccines to cause Long Covid in tens of thousands of people before they received the vaccine. Nobel Prize winning science paper right there.
Note: I'm not saying vaccines can't cause issues, but all these people postulating these vaccines as the root cause of long covid is nonsense.
It was considered. It was tested. There are papers on it. Sorry you haven't read them (maybe you should?) Also one billion people worldwide have taken COVID mRNA vaccines. The thing is, Long COVID, a.k.a. post-acute infection syndrome, exists in people who were never COVID vaccinated. It exists in people who live in households filled with people who never received COVID vaccination. There are many people with Long COVID who have never even smelled a COVID vaccine, and they still have Long COVID. How do you explain that?
Thank you for making this video. I've been dealing with ME/CFS for about 8 years now. I've had to give up so many things I used to love doing, simply because I am so exhausted and in so much pain all the time. It took me a long time to accept that this was my life now. I still mourn the person I was before I developed ME/CFS. I hope that one day there will be more research done on this illness. Thank you again for talking about this.
This is so frustrating because it took decades for doctors to even start believing patients (it was pointed out that this is unclear, I’m referring to ME/CFS). Then you see someone you care about go through something like this and all you can do is think, WTF took the doctors so long? If they started researching ME/CFS decades ago, maybe we could have a treatment by now. I hope Dianna gets better soon.
Decades? Covid 19 is called covid 19 because it first appeared in 2019.
@@alanjm1234 I’m referring to ME/CFS. This is a condition that appears to occur due to an infection. This condition was documented long ago but doctors thought that it wasn’t real and that people were putting it on. That or there was something else wrong with them. I believe it was only in 2018 that it was seen as a real disorder. ME/CFS resembles long COVID and may be the same disorder but I’m not sure obviously. If doctors had been researching ME/CFS, there might be a treatment for it and that treatment might be efficacious for long COVID.
The WHO declared ME/CFS to be a neurological disease in the 1960's but I went to a neurologist soon after my diagnosis in 2018 and he had no clue why I was there and asked if my psychiatrist referred me. I told him his database was just a tad out of date and maybe he should read up. There are people who have been housebound and bedbound for multiple decades with no relief. If you walk into my house, you can definitely tell I rely on my kids (17 and older) to clean. I really don't understand why they can't tell the difference between clinical depression as a cause and depression as a symptom. Just ask what they would do if they were cured tomorrow. ME/CFS people like me and Long Covid (Though I'm still convinced it's the same thing) suffers have a laundry list of things in our heads that we wish we could do. It's frustrating indeed.
Thank you for this, long time ME/CFS sufferer here.
I’m sorry this is happening to you, and I hope we get the information we need to help soon
@@TraceDominguez I've been sick for around 15 years now, it just sucks that something so huge like a pandemic had to happen for ME/CFS to be taken more seriously.
A large part of that, I believe, is due to the condition disproportionately effecting women more than men, and as we know women have long history's of not being taken seriously by health professionals.
There's a good film made a few years ago that's worth checking out, it's called Unrest (made by an ME/CFS sufferer).
Any way hope some new answers and treatments come out soon, untill then we will wait, we have gotten very good at that ;)
A massive thanks again, I wish more youtubers would talk about it.
I developed a type of dysautonomia called POTs (postural orthostatic tachycardia syndrome) after a mono infection some years ago. Watching more and more people get long COVID, the only hopeful thing to think was that maybe there will finally be more research on this issue. Thank you for this video.
I've seen people claim that it's getting many times more attention than in the past. I hope this is true.
Yeah, I have POTS as well. I really hope that this gets more attention from doctors and researchers to figure out what the can do to treat it. I can never get answers// help and I really hope that changes in the coming months or years.
If you have pots that was activated you might even have EDS, which is very commonly accompanied by pots.. are you bendy, flexible or "double jointed" too?
@@Faesharlyn I dont have EDS thank god, at least i've been told i dont.
@dyln I was told I didn't for about five years, one doc told me "thats not even a real disorder" ... then I got genetic testing an whaddya know... yup. I do, and the genetics specialist told me so as he was drawing my blood for the test. He said "I believe you're in pain and we can help you"... life changing. I still have EDS, of course, and I still have pain, but now I can manage it and know that I'm not imagining things.
Compression leggings help POTS symptoms so much, even just calf sleeves can make a difference. Be well!
when politics and paychecks become more important than human life in the medical community our society is doomed.
I'm afraid "long Covid" has existed for longer than many people think. I got terribly sick with a viral infection of some kind a decade ago. These symptoms that are being described by the generation approximately 10 to 15 years younger than me who are going through this are exactly, and I mean EXACTLY what I experienced for years after becoming ill, obviously not with COVID back then. I did not want to move. I did not want to get out of bed. My head felt like it was in a vise all the time, and could not think, be productive as an electrical engineer at my job, or help to raise my children. I decided that I just wasn't going to let it get the best of me, and I powered through it. I continue to power through it every day, because that is in reality the only thing left I can do. Some days are good, some are just awful. But there was definitely damage done from that viral infection, in much the same way that COVID has impacted many others I'd imagine. My father told me he went through a similar thing in his 40's. Sometimes getting older is just that. You'll never be the same, but you can get through it. Best of luck to her, however I suggest that at some point she make attempts to start doing the same, otherwise depression and other highly degenerative diseases will likely set in for which recovery seems less and less likely. The world is sometimes a cruel place, I know. But I'm not holding out any hope that doctors will ever find a cure for this. Actual damage was done. Repairing that damage takes an enormous amount of physical strength, stamina and determination. But it can be done. I'm proof of that.
Thank you for this comment and sharing your experience. The more people share the better we all understand. ❤🙏🏼
This was touched on in the video.
Same, I had mono nearly 20 years ago and developed an auto-immune disease and chronic fatigue as a result of it.. I'm 30 years old now and it's never gotten better, I'm still sick, i'm still tired constantly and battling an endless list of symptoms and I've never been able to hold a job because of it.
On the one hand it's good that there is some more awareness but I don't want people to forget that many people have been suffering with this for years and years as the result of other viral infections.
My mom had the same thing caused by Lyme disease albeit after COVID-19 existed. Our doctors said DO NOT do this, because it will make it take longer to heal. You're supposed to basically be as lazy as possible for as long as possible to improve your odds of recovery, and pushing it will make it last longer.
This! I felt my blood boil when he started the video by saying this is something new, when it's well known and well established that people have had these kinds of reaction from viral infections for a long time. It's not new, the name we are calling it and the virus that we are focused on is new, but this kind of reaction after a viral infection is NOT new. What is new is that a lot more focus has been put on it and actual reasearch is going into it on a much larger scale, you might even get a doctor to take you seriously about it if it happens because of covid.
Ableism is a huge issue too. Both external from other people and internal (beaten into your brain by society.)
Oh 100-frickin’-%
Oh yeah, and even in this comment section there are swarms of ignorant people with an agenda trying to blame it on vaccines, or blame it on making it up, or blame it on not eating right or exercising or taking enough vitamins. It's like watching the armchair experst when you mention having adhd, or my dad's fibroyalgia. Like "oh, you have no medical education and fix cars for a living? Well I guess you're the perfect person to solve this mysterious illness.
Nearly exaxlty 3 years on from catching covid and 2 1/2 of suffering through long covid. The worst isn't whatever is happening inside, it's the opposition you face from people
i'm sorry that's happening to you
@Trace Dominguez don't be, it's part of being human on our evolution. Hopefully I'll be around awhile longer to see some good come of it all. Perhaps long covid sufferers and survivors will have access to breakthrough medical technology that extends their lives to what the general population is now, also paving the way for everyone access to these life extending miracles yet to be 🙏
Sad to see all the conspiracies and miracle cures in the comments.
This was a really good overview on the condition and the lacking research on it though!
thank you!
My 17 year old grandson has had long covid for over a year now. Unable to attend school in person or play on the varsity baseball team which he is passionate about. They just discovered that his chronic Lyme disease was complicating his long covid recovery. Recent treatments for Lyme have resulted in significant improvements in his long covid symptoms. This long video talks about diagnosis and treatment of long covid: ua-cam.com/video/cH-8hMXcE2U/v-deo.html
One of my friends who has long-covid had an MRI done of her brain. It showed holes in her frontal lobe from covid. She was literally bedridden like Dianna. If you are still suffering from long covid make sure your doctors order an MRI for you. It might help identify if you had brain damage.
I never got fever as a child, and when I became an adult then a mom, I started getting sick but only sometimes. Since I got COVID last Sept 2022, I am sick almost always. I’m like super tired all the time, no matter how much sleep or rest I get. :( Tests are always inconclusive.
Reading the comments disgusts me how medical gaslighting is too real. I pity all the patients who have these illnesses and accused by medical 'professionals' as simply psychosomatic.
Yeah. Strangely enough you think those complaining about va Xin 1njury are faking it
Thank you for doing this video. I've lost family and friends to Covid-19 during the past few years, and I caretake for several family members who are medically vulnerable (I am too). I hope the more people understand, the better things will get out there. ❤
A year later, how about a follow up video? Has anything new been discovered? Does something like hyperbaric oxygen therapy help, by helping to create new stem cells like exercise does (but without the exercise)?
If you got the mandated medical treatment unfortunately you have 5 more years if you where within the 30% that got the real thing, the other 70% got lucky for now until the next lie...
Complete bullshit. The v has saved millions from hospitalization and death and continues to do so. Theres no increase in any health issues that may even remotely be connected to the v. Long Covid was a thing WELL before the v have even been introduced.
@@metalpuppet5798 facts are out bot.
I was sick for yrs w Fibromyalgia before I was diagnosed (by a sharp Reumatoligis). Most doctors, including my own husband, thought it was psychosematic ('All in your head').Your advise was great! I would add, keep seeing different MD's until u find one like mine.😅
glad you're being heard!
Thank you! As someone who has had long covid since 2020, we need healthy allies to advocate for us. Thank you for this great, informative video, and for helping our cause. 🙏💚🙏
Even if it is all in your head, it’s not like you can just pray it away. People need to get treatment for mental issues as well. Treatment to get people back to doing what they want to do is critical.
Gain of function victims algorithm tweek.
I had Wuhan COVID in Mar 2020. The ER I went to treated me for COPD as COVID wasn't even a thing yet. The one thing that puzzled them was a 103 degrees F temp when I arrived. Not really a COPD symptom. Got a long nebulizer treatment and was sent home with a TON of equipment and a new nebulizer. Nice of them. Blood work showed a virus, for sure. But they assumed I had a light bout of flu. The nebulizer worked well. Also, the fever broke that night and didn't return.
By the end of April, I did notice a marked decrease in energy.
Then I seemed OK for a few years. By 2022, I really knew I had issues. I got sick again, flu symptoms, and lost 22 pounds in 2 weeks -- seemed like it was mostly sweated off. Got tested, not COVID. Noticed that I was always weak and had a short "active" cycle before I had to lie down for a while. Very erratic sleep, typically just 2-3 hours at a time. Little appetite. Constant headache, been 4 months now. Ringing in ears. Night sweats. Oh.. am 133 pounds, 5 ft 7, and 75 years old. Pretty lean. Often my entire body aches, espec. knees and ankles and L3/L4 area.
And, yes, really serious brain fog. I can't remember my freaking dogs name !! Glad he responds to "hey you, dog".
Doubtful if it's ALL aging. Mom lived to 97 and was still walking every day. Good genes.
I have an appointment at the VA Hosp soon. Wish me well... I may have to explain Long COVID to them....
I’m so sorry to hear this is happening to you and I really hope the doctors listen to you and can help you in someway.
I have FND and it has been an unbelievable struggle to even figure out what was going on with me. I’ve seen every specialist out there and finally after 20+ years
a neurological doctor apparently diagnosed me with FND about a year ago,
but didn’t tell me and
I only found out about my diagnosis a few months ago from my primary doctor and the first thing she said after telling me I have FND, is that what I’m experiencing is real and she said I really want to stress that this is real because so many doctors don’t think FND is a real thing. I couldn’t believe what I was hearing.
I’m still really struggling everyday and I can’t understand how a doctor could diagnose someone with something but not actually tell the patient.
So stay strong and don’t stop advocating for yourself.
I really hope you get the care you deserve and some answers 💜💜💜
10% get it?? I think everyone i know got covid. I dont think i know anyone with long covid
Well since you don’t personally know a person who has admitted their personal and private health information to you I guess it must be a fake thing.
PACK IT UP BOYS
I only had fatigue 2-3 weeks after Covid. Can't imagine how it must be for Diana and all the other people around the world with the same problem. I hope there will be some relieve soon.
My mom spend years figuring out that she had MS here in the Netherlands. She now has medication that slows it down and it has been working for years luckily. Still often tired though.
💙
Been dealing with it since 2020, the only relief I get in a flare up, Benadryl and melatonin combo, once a day. It feels like I’m having an allergic reaction until I take the meds, it works too
Thank you for explaining the difference between being tired and being fatigued. I'm disabled and often have severe fatigue with no obvious cause. It's hard to explain to people that being fatigued isn't the same as "you're just tired." Fatigue means I can't even get out of bed, but I'm not sick in the traditional sense.
i recall seeing data that indicated long covid or some of them was a mitochondrial disorder you already had before covid but was made worse with covid. i recall exposition to near infrared light helps fix the disorder, sources of those is sunlight and camp fires or fireplace without glass. might be other causes for long covid but if you were almost always indoors before might want to give the sun a try.
I hope and pray everyone suffering with long COVID can find a cure that works for them. Ive come across plenty of people who have recovered from it.
Me too 3 years people who have never had the vac get over it in n a couple of weeks
Not true.. There are not vac with LC
I had a mild case of COVID in April 2020, felt out of breath for a few weeks and a bit of gastrointestinal issues that didn't go away. Over the next few months my GI issues got worse, I felt exhausted all the time and things have got worse since. 3 years later, I am still suffering from severe GI issues (including blood) with no known reason (after multiple tests), exhaustion (a couple of hours exersion, even just mental and not physical, will leave me wiped out for days), severe pins and needles and numbness in my arms and legs, confusion (including not being able to think of simple words), autoimmune hepatitis, kidney issues, pancreas has given up producing digestive enzymes, almost zero vit D, folic acid and B12 levels in my blood tests, sleep issues, anxiety, panic attacks and generalised pain.
As the last 3 years have gone on, I have been told multiple times that my symptoms were unrelated to C19, until more was known about it's effects and they're then recognised as symptoms of long COVID. I have finally been diagnosed with post-covid syndrome, and, as strange as it sounds, just having a diagnosis is a relief. Just as every positive test result was a relief as it gave me something to prove that there was something wrong with me. I am unable to work, I have given up my company, my life is so limited now, but mentally I feel fortunate, I might only have one 'good' day a week, but it feels so good and I make the most of it and try to appreciate everything life has to give for that day. I feel devastated for Dianna and everyone else that has it even worse than me.
I am so glad that people are talking about this, it makes me feel slightly less alone.
I've been having issues after having Covid nearly two years ago. I still have issues with being very fatigued. Some days are better than others, but it can hit me out of nowhere and all of a sudden I'm struggling just to function throughout the day. Thank you so much for covering this. Sometimes just doing BASIC things makes me so freaking tired. I could sleep for days and still feel like I didn't get enough rest. I also developed an issue with my heart that I didn't have before Covid. It's frustrating to get people to understand how it feels and I get so frustrated when I get called lazy. I would love to be able to do the things I used to be able to do.
There's something kind of refreshing about hearing a doctor admit that many doctors have failed their patients, going back 100 years.
Please discuss Red Light Therapy and how it treats this. Medcram covered academic studies showing infrared light reducing COVID inflammation, and anecdotally, the panels commercially available mostly appropriate the effects of the lower frequency devices in the studies.
Thanks for raising the profile of this, folk desperately need relatively-healthy people to advocate for them. It's hell on earth, and you just dissappear, so no one sees you.
💙 we see you!
@@TraceDominguez 🥰
Wow exactually what I have been saying. If they would have listened to us in the 1980s during the large numbers that complained of symptoms. They could have helped during the Incline Village outbreak when many of us became sick. I contracted in 1985/ 1988 after being in good health up til age 35 to 38. We were laughed at made fun of and thrown under the bus. So now more people are left to suffer like us. Been 30 years for myself and many others.
Reading the comments has given me a brain aneurysm. Sorry, Trace. I see you still responding to new-ish comments. I wouldn't be able to.
It’s so unbelievably frustrating, if not outright enraging that doctors are STILL intentionally labeling patients as crazy, lying, or exaggerating their symptoms when they encounter a patient with an Illness/disease/syndrome that they don’t recognize or understand… Why do doctors repeatedly keep failing patients again and again like this… It’s not like this is the first time doctors have been caught treating patients like liars, instead of understanding that they don’t know everything, and most patients want nothing but to get treatment for their illnesses that doctors cannot seem to ever take seriously… Stop making such childish and repeated mistakes, and quit blaming patients, and start recognizing your own ignorance and limitations!
Doctors please stop placing blame on your patients, and making them feel like it’s somehow all their own fault! This same situation happens over and over again, where doctors would rather blame their patients than admit to their own limitations/ignorance… Just stop you muppets! Many doctors seem to have no ability to be empathetic, and fail to notice/care about the consequences of their words and actions on vulnerable patients…
Hear hear!!
Really good video. I know people similarly affected by Long COVID and I can't understand how so many people are now so blasé about COVID. A collective, selfish wilful forgetfulness...
As you say, just because someone might have had no lasting symptoms the first one, two, even three times they caught COVID, does not mean that they won't possibly be wiped out by the virus given a future mutation. Or that even if they don't have it so bad, and aren't immediately symptomatic, they can still pass it on to someone who becomes significantly ill and gets Long COVID, as happened to my partner at work. I also remember a couple of friends at school, one of whom who had ME so severe she had to be carried between lessons for several weeks before she finally was allowed to stay home sick.
ME/CFS and Long COVID research seems similar to research into endometriosis - as it doesn't affect the majority of people with the power to investigate, raise funds and conduct research, or in some cases doesn't affect doctors who then don't take their patients seriously, so it remains underfunded and underscrutinised.
This is one of a few important videos on this topic which I hope makes people think again about this condition. Thanks for making it. Like others I'm continuing to keep everything crossed for Dianna and everyone who has ME/CFS and Long COVID. Hopefully we can lay the smackdown on these debilitating illnesses reasonably soon.
P.S. - subtitles towards the end should say "fire on all cylinders", not "fight on all cylinders". 🙂
This is important information! Thanks for helping to bring awareness to this. I can’t believe so many still believe it’s a conspiracy …
They're here, in the comments *gestures wildly around*
@@TraceDominguez I know! I keep seeing them going after people saying they have it with a million "have you just tried X" or "Oh but maybe it was caused by the vaccine that didn't exist yet when you got it!? HmmmmmmmmmmmMMMMMM??"
Infuriating.
My life is ruined from 18 months, after 2nd dose of pfizer... Same syntoms of long covid... Was really fit, a gym maniac and healthy... Now Every day pain...issues everywhere.. Muscle, tendons, gut, stomach, reflux, issues on skin,neuropathy...
As someone who has suffered from long Covid fatigue for almost two years the only solution I found was to build up slowly. Do enough each day to tax the system but don't ever do it. I have really had to push myself to get through this. Thankfully I am almost in the clear. This is my experience and I understand each experience seems to be different but this might help someone.
Interesting, when I search for a certain word, which everyone DEMANDED you get, there are no hits in ANY of these comments???
This has zero to do with any vaccine. The vaccine does not cause Covid symptoms. It reduces them greatly. Almost all people suffering from long Covid or severe Covid are entirely unvaccinated. There is zero increase in any health issues that may even remotely be connected to the vaccines
Could it be the whole “discussing the topic of the video instead of something you just want an excuse to cry about” thing
@@safeeffective385 the vaccines have been developed by medical professionals like any other vaccine and they are effective like any other vaccine. Maybe even more effective. Almost all people suffering from long Covid or severe Covid are entirely unvaccinated
Thanks Trace that was very informative.
11:08 It's also comforting to hear that one of my favorite content creator for years has ADHD, since I just discovered as an adult (41 years old) that I do as well, and only realize the extensive impact it had on my life so far.
I'd like to request an episode on ADHD! Including if that's not too personal, how you manage the uncertainty and stress of your job, emotional dysregulation / RSD in relationships and being a dad. I would make use of all that info and it would mean a lot too ❤
I’d love to do that episode!!!
I have ME/CFS since 1989 possibly related to chicken pox. Sorry your friend got ME too, from COVID. Be safe.
💙💙💙
Unfortunately I'm one of the unlucky to have long COVID. It went from not being able to concentrate or focus properly, to not being able to lift slightly heavy objects or take a walk around the block, and at it's worst I couldn't even brush my hair without my arm just giving out. I wouldn't wish this on anyone. Its driving my nuts, I'm 30 frickin years old and my grandma has more of an active life than me.
Food can heal. What we eat matters. Stuff yourselves with clean fruits and vegetables. Not saying it’s the answer to long Covid, but it’s changed my life with my autoimmune disorder.
As someone with ME/CFS, PEM is the worst. I can do something today, won't feel the crash for 2 days, then might have symptoms of that crash for up to or over 3 weeks.
I’m sorry this is happening to you
Try supplementing NAD+ boosters: NMN, NR, Niacin, B3/B6. I've had chronic fatigue and feel much better now.
Doing NMN for a bit over a year, after trying Niacin (didn’t do much apart from the flushes). It’s extremely powerful…if you buy a real pure product. Amazon finally stopped selling them, because ALL of them were fake. Check some videos on UA-cam to find the few trustworthy producers.
Vitd and B12 help me quite a bit.
As a person with brain damage from a stroke i know PEM, and it took me years to learn how to pace myself. It is very hard for your brain to re-learn what you can and can't do. Like i know what my energy levels are and how much i can cope with, but still sometimes my brain will say 'you used to be able to do this much, so just do it now' and i will Pay the price the following days. So big hug to those affected, you will someday learn to cope ❤️
Vaccine damage?
@@nyoodmono4681 Or in your case, brain damage
@@TerranigmaQuintet Why? my brain is fine. Do you know anything about 'Long Covid'?
@@KA-in6sx Why? I want to find out, because Long Covid is a vague term that matches well with the adverse events of the vaccines. I mean all the excess mortality and rise in strokes, myocarditis, thrombosis and misscariages have a reason and it is sad that people put it on 'long covid'.
I have long covid... the amount of sleep I need now is ridiculous! I'm constantly exhausted and my brain is like Swiss cheese.
I think that long covid, fibro, chronic fatigue, and other similar "vague symptom illnesses" are all versions of the same thing. Put another way, they are not all chocolate ice cream, but they are all some flavor of ice cream. They all seem to appear after some sort of viral infection.
There’s an organization called The FLCCC (Front Line COVID-19 Critical Care Alliance) that specializes in helping patients struggling with long covid and those who are vaccine injured.
My sister had long covid and experienced many of the symptoms you described. The FLCCC protocols helped my sister feel better and now she’s almost back to 100%. It may be worth looking into to see if their protocols are a good fit for you.
Best of luck to you!
lol, those are them conspiracy theorist doctors that recommended HCQ to their patients. Good luck with that! What a bunch of hacks.
Dr Mobeen has interviewed two doctors who specialize on long covid and other similar injuries, namely Dr Patterson and Dr Yogendra.
Can’t watch. Just want her to be okay. Please just be okay, Diana.
Who gets long covid most? Vaccinated or unvaccinated. I would like to see the data.
having long covid; besides the fight with our own body a very unhelpfull and annoing fact are all those doctors/specialist that simply wont believe us assif we are faking it... also ive noticed that allot of those specialists try to help you with their standard routine and when it doesnt help you they also go into denial mode... pfff ego's... meanwhile we seem to be alone and noone understands what we are going through... to a point that if i wouldnt have my kids and family to live for i would have ended it a long time ago allready. Just my honest two cents.
I'm glad you're calling out the medical profession about hearing them out patients and validating them. The profession can only gain trust where the sense of pride and arrogance is set aside.
Trace, while I am fortunate to not have long COVID, I am now the proud owner of two immune system disorders - both relatively rare - Neuro Myelitis Optica Spectrum Disorder (NMOSD) and Sjögrens Syndrome. I am very lucky that there is Satralizumab, an extremely expensive immunosuppressant, that prevents my immune system from dissolving my optic nerves, but I’ll have to take this medication every month for the rest of my life. I cannot travel, I cannot go out to public places, I have to double mask whenever I leave my apartment and live in a constant state of extreme stress.
Seeing folks suffering even worse than myself, I can only hope that all of the attention being brought will help fund the necessary research for a treatment, if not a cure, sooner than later. Thank you for helping bring attention to this for both those like Diana, and especially those suffering without a voice.
I'm Japanese and I just found your comment. I am suffering from long, and MDA5 dermatomyositis by COVID. Now the Japanese think COVID is over, many people in Japan are taking off their masks. Some people treat me badly because I wear KN95s. Is it the same in the UK?
Great job Trace! Very enlightening. I feel some of my friends may be suffering from long COVID.
it's possible!! They may not even know
It just makes me feel crazy that I'll see videos like this and almost everyone has moved on like there is nothing wrong. It really shocked me how quickly the whole country was kind like welp done with this.
Mass denial basically, most people cannot handle the idea of something this disrupting, and go on a path of complete denial, going as far as just pretending everything is ok, and atacking those who have LC and the people who believe its an issue. Just have to take a gander at comment section as to how vile some people can be regarding that.
I just feel that “Long CoVID” is a recent definition for something that society has grappled with for a long time. First in the 80’s, it was “Yuppie ‘Flu”; in the 90’s, it was ME/CFS; in the 2000’s/2010’s, it was fibromyalgia, and now in the 2020’s, it’s called Long CoVID. I can promise you it’s real - I have the Fibromyalgia version of it. I caught a winter ‘flu, and my body just never got better. I have a background in pharmacology, so I have my own theories as to the pathophysiology and location. But I refuse to believe I will never get better - the alternative is horrifying and not a life worth living.
It’s vaccine injuries, ask me how I know.
@@cmthomas07how does Long Covid almost exclusively hit unvaccinated people then? How do you explain the fact that Long Covid was around WELL before the vaccines have even been introduced
It’s incredibly frustrating to watch my life pass by
I belong to another group that are severely underdiagnosed in this way. People with autism often deal with chronic exhaustion, and healthcare is *so* bad that our average life expectancy is *12 years* lower than average! And this is in the "developed world".
I regularly need doctors and nurses that have no clue what they are doing and I can't tell them they are wrong because I am never believed due to my Autism diagnosis.
It is hell when you can't live up to expectations and at the same time get no help.
I'm sorry Simone! we believe you!
So true my kid is autistic and very tired.
Three obvious questions you didn't ask the expert: 1. What is the correlation between long COVID and the past and present variants? (maybe the current mild strains pose far less risk.) 2. Is there evidence that receiving a mRNA vaccine reduces the probability or severity of long COVID? 3. Is there evidence that receiving a mRNA vaccine increases the probability or severity of long COVID?
You dont need an expert opinion for this. Its obvious just from statistics that almost all people who are getting hit hard by Long Covid or severe Covid are unvaccinated. Doctors and nurses will always confirm that.
Yeah bro, your second and third questions are basically the same question.
Getting old is so much fun...I wonder what I was #3 was supposed to be.@@CarlForTuna28
I'm glad more information on this is becoming known. There are a lot of people silently suffering with this, and have had a difficult time getting ANY help from medical professionals... and as someone with other medical issues, has made it an absolute nightmare to deal with. Like.... it's been soul crushing to go through, and even more soul crushing to see so many others go through it without support.
Vitamins, minerals and enzyme supplementation has helped many recover from this.
Really been missing your friend’s face lately. Glad you took the time to do this video about her. Hope she gets better soon cause the world needs physics girl!!! ❤❤❤