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.
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?
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.
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.
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.
@@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.
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.
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!
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.
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
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.
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.
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.
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 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
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.
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.
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.
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 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.
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 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.
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. 🙏💚🙏
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 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 was sent this by a family member, I've had chronic pain for an extremely long time I'm going to be a freshman in high school and if I have this I'm now confused on how I'm going to get through but I do appreciate how dedicated you are to getting answers. Thank you for just caring in the first place 😊
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.
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.
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.
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.
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. ❤
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.
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?
@@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.
Thank you so much for making this. I saw some of the first videos about Dianna and my heart sank. I feel so much sympathy for her and Kyle. I was bedridden for 3 months as a child with ME/CFS and talking it over years later with my parents they were terrified, my Doctor had no idea what was wrong, no-one had any answers. I think I pulled through it pretty fast because I was young and my body overcame the worst of it but it never really left me. I am very lucky that, in spite of a serious relapse in 2011, I have been able to work and live around my condition, but I definitely suffer from PEM and brain fog, constant pain (mostly low level to moderate but occasionally acute), exhaustion, bouts of depression... I have been patiently waiting for 30+ years for medical science to do more research on this and open up this box of mysteries. Hopefully Long COVID focuses more attention on this and starts to shed more light on chronic illnesses as a whole. There are millions world wide who need better treatment.
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.
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. 🤗
Thank you so much for this video! Will have suffered Long COVID for three years in a few days-I was infected early on-which is just a drop in the bucket for many of my ME/CFS brethren who have suffered lifetimes. While I hate that expanded suffering is what it took to put of focus on these conditions, I am grateful for the love, support, and strength of the community.
My long covid seemed to have a very large inflammatory problem with it. After seeing a rheumatologist she started treating me for inflammation and auto immune disease it has completely helped me. I also had PEM. I recovered enough to return to work and normal life and I continue to recover. I hope every one out there gets better.
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.
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'.
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.
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!!! ❤❤❤
thank you for making the video (from an MECFS patient who's been sick for 29 years). one thing i want to clarify about PEM. it's not just exhaustion. it's the worsening of disease- so a patient experiences reduction of function (physical and or mental), worse fatigue (and sometimes feel new fatigue sensation), worsening of other symptoms, and maybe onset of new symptoms (pain, orthostatic intolerance, sensitivity to light, sound, etc), sore throat, sinus pain, headache, muscle weakness, etc. the triggers for PEM could be anything that uses energy , or anything that's a stress. physical activity, mental activity (depends on how much concentration is needed), untreated or under-treated pain, sleep deprivation, severe emotions (even positive) in some people could also trigger PEM. the severity and duration of PEM depends on the patient's threshold for PEM and how much they exerted themselves, and for how long. it could take days to weeks to recover, or even years. and it the worsening could also be permanent. notice also the PEM could be delayed (when i push myself I first feel more energy, but later get a crash. if I keep pushing on myself, or if I don't allow myself to rest and don't get enough sleep, then this higher energy continues for a while - maybe weeks or a few months, but then I hit a big crash. I've had a few of these kind of delayed big crashes, and everyone one of them made me permanently worse, like putting me in another worse level of disability). (please don't ever pressure or force any patient into doing too much. you could be causing them permanent disability. even if you see the patient responding to your pressure and becoming more active. this will hit them later). another thing re MECFS, there has been many studies (despite the tiny funding, and some were funded by private donations), but there is also so much prejudice that doctors not only are unaware of it but also don't even want to look or read.
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 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.
My Dad is a doctor who has/had his own practice on chronic fatigue and fibromyalgia, so some of this was familiar to me. Thank you so much for sharing this with us, you truly did your part in helping Dianna (not to mention others)
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.
As a Long Covid sufferer, I would like to thank you for this video. Getting awareness out there is a major part of finding potential treatments. One thing that is rarely touched on is the financial strain LC can cause. There is simply very little (if any) help available financially. I filed for social security (remember this is money that I have paid into the system, not a hand out) but was denied because, according to them, Long Covid only limits a persons ability to work in dusty environments....Let that sink in. I am currently back to work, making less than half of what I used to make. I have to call off weeks at a time because I overworked myself a few days before. Before all this, I was preparing to buy a house. That is no longer an option. This is my reality and I don't even have LC as bad as some, such as Dianna, do. I just cannot even imagine the hell they are in, knowing how awful my own little slice is. I just hope, somehow, we can ALL get the help we need. Tell Dianna that she has many people that respect the hell out of her and just pray that she can defeat this!!
Thanks for a clear, reasoned response to Dianna's condition in particular and long-Covid in general. Yes, so may (including health care professionals) still think of it as psychosomatic or "something else" - but I think Dianna's condition has brought it home to many of us! This was good... very good.
Thank you for making this. I'm one of those who caught COVID in early 2020 and still have horrible long COVID- not quite bedridden but disabled by it. I'm actually in the RECOVER study you mentioned in the video and am excited to see what comes from it.
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.
It is so refreshing to see videos like this where you can see people coming together to help others in need. Who knows when something could happen to us and we would want to be helped as well or at least know that others care. Great work with this video👏👏
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 🙏
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 for making this. I've had fibromyalgia for over a decade, so I know just how frustrating doctors can be about nebulous chronic pain and fatigue. The US's medical system is just... so not ready for the wave of chronic illness COVID has created. TBH, I worry a little about whether society will become more accepting and compassionate towards people with chronic conditions like Long COVID or whether it will turn angry and resentful towards all the people who will need care. So it gives me hope to see folks outside chronic illness circles promoting awareness and research.
I ended up getting covid in January of 2020, I went from rock climbing 5+ days a week(20 hours or more) To not being able to go up more than a half a dozen stair steps without being winded enough to have to sit down. I genuinely don't even remember the following 6 months or so after. I know I wasn't working, But my routine apparently was to sleep 16+ hours a day, get up eat a thing or two. stare at a screen for a while and then go back to sleep. To this day, my lung capacity is probably a little more than half that it was originally. It's shitty but it is what it is, At least I don't need to explain to people any more that I actually do have long-term effects an it wasn't all made up. Hopefully in a few years we will have a pretty solid grasp on what exactly is going on. I hope Dianna get's better soon, she's been a monumental inspiration to more people than she could imagine.
As someone with CFS, thank you for this vid. I still don't get taken seriously often and it's seriously frustrating, i'm constantly tired and the slighest effort leaves me not only exhausted but in pain as well. I feel like long covid is taken more seriously, and i hope that from long covid research there will come something along for CFS as well. I got CFS after getting mononucleosis in 2015, and i'm still suffering from it.
@@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.
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.
Im a year into my Long Covid diagnoses and it has DESTROYED the life I used to know! I empathize entirely with anyone else struggling with it, words truly can’t do justice to describe how it feels.
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.
Thank you for doing this video. I have had long Covid for 8 months and I have never been so sick in my life. I have been able to enroll at the UCLA long Covid clinic. They are so over the country.
We just passed the 4 year mark of my son collapsing and then having every symptom Dianna has. His co-morbidity that allowed the virus to run crazy was Hodgkins Lymphoma. He beat that but was in a wheel chair for 6 months. 4 years on, there's still a lot of pain and heat intolerance, but at least he started college. I truly hope Dianna gets better. I loved her videos.
great video, thanks for the concise summary of what long covid is. I went through LC from spring 2020 to fall 2022, and it was a miserable period of my life. medical gaslighting was a big issue in 2020/21, and LC support groups saved my life
Thank you so much for making a video and spreading awareness about Long Covid. I'm 24 and now on beta blockers twice a day bc my heart rate was racing even laying down. So many times doctors told me it was anxiety, even to the point of admitting me to a psych ward and being frustrated when it didn't work-all because the wouldn't believe the symptoms I was experiencing
It's weird that we develop feelings for someone we only see in RU-vid, but we do. I'm sad she has long covid and I think we really wish her to recover and get well as soon as possible. Please get better!
Long Covid is so scary, I just watched my next door neighbor go from being a middle aged, newlywed, active and healthy looking dude, with a good job making good money, always gardening after work with his Pug “Rocky”…… to never really seeing him outside anymore, he started looking so pale, and his wife took their dog out now. Then one day, my mom came out and the wife went to her, crying, telling her about how he had gotten sick and just never got better, then he felt like he couldn’t breathe and she took him to the ER where he passed…. It was so sad. Now she’s moved out and the house is for sale. 😢 god I hope Dianne gets better soon 🥹
I love Dianna and cry when I see her videos. I’m so thankful because she validated me in a very visible way. I fully support donating to her. One of the troubles is that most of us don’t have a Patreon. We’ve lost our bodies, minds, jobs, careers, friends, partners, and homes. It has taken me months to get the social security process started because I can’t move until late in the day. And, it will be years before that gets approved - if I’m lucky.
@@eaterdrinker000 As someone who also has me/CFS: that is definitely insensitive and not at all helpful. This isn't some kind of breakthrough idea, what you are doing here is something we have to deal with all the time. People who do not have a clue who think they somehow came up with a brilliant idea none of the experts or patients have come up with despite years of study and experience. Drinking energy drinks isn't a new idea. It makes going over limits more likely, thus causing long term issues. Suggesting patients to just get their iron checked, just try this fad diet, just use this medication that isn't researched, just eat/drink this one thing, is demeaning and, unless you are an actual expert, never helpful. Please stop.
❤ Since I had covid in February of 2020, I've had fatigue problems. For the first 18 months, everything I ate or drank caused me to sleep six to eight hours fifteen minutes later. I could have 10 cups of coffee, first thing in the morning, with my norm y being zero cups... So no tolerance to caffeine... And I would still pass out into sleep 15 minutes after I finished drinking. I did get better for a little while, where I was awake more often, but I've developed other health problems since then and I'm back to needing a nap after eating or drinking anything. That being said, I sometimes feel better after I eat whatever silly food my body's been craving, so listen to the food cravings you get, since your body is just trying to fill the supply request for your healing work order. ❤
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.
Thank you so much for this video. I have Long COVID from my initial infection in March 2020. You are bringing awareness and attention to this terrible syndrome which may be affecting more than 30% of people infected with the SARS-COV-2 virus. I feel for Dianna. Seeing her suffer the early stages of Long COVID brought back the memories of going through it before they even knew it existed. For 2 years I never knew what the day would allow me to handle. Dianna is still in the very early stages where almost nothing is easy and some things are down right impossible. But it does get better for most people. Some very gradually. Some find a magic bullet that clears up most of the worst symptoms. Unfortunately, what works for one person doesn't always work for another person. The best thing we can all do to help is exactly what you have done, raise awareness! Again thanks!
I have had symptoms of CFS since I was in college but only got diagnosed after I lost my job from burnout and became almost catatonic for 4 months. That was 5 years ago and while I am no longer catatonic, I am still severely fatigued and struggle to be active (as in out of bed, not resting) for more than 3 hours at a time. Research into Long COVID has helped hugely but there is such a big gap between it and other conditions that affect similar numbers of people. The craziest thing is that no one knows what caused my fatigue. Long COVID has a clear trigger event but I never had that. I just slowly became less and less able to do things and pushing through made it worse. I appreciate every video and article that spreads awareness for people like myself and Diana. The more it is talked about, the more funding it is given, the more help people can get.
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.
Thank you so much for this video, which is an accurate description of long covid and its challenges. My partner has long covid and is on disability, it is devastating.
Thank you for the update. Though not happy news I know all her fans would like to hear SOMETHING once in a while. Please send her our love and support and a big "Get Well Soon" and keep us updated. We appreciate it.
I've never watched your videos before today, but I am so glad the algorithm recommended this video. I have suspected ME/CFS, and have for the past 6 years. It has singlehandedly affected every area of my life. I want to thank you from the bottom of my heart for speaking out about this. This was a phenomenal video, incredibly well done. Thank you for using your platform to advocate for those of us living with #longcovid or #mecfs, or both.
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!
1. I just was going thru Diana's feed yesterday. 2. I pulled you up, Trace, and wondered when you'd make another video because I miss your content. (3. I also pulled up Lacy Green. So maybe this will be a revival trend of new posts from my old favorites.🤞) I let my phone autoplay some old vids of Diana's and thumbed up all the ones that hadnt already. Best I can do with my budget, a few tenths of a cent and a minute push in the algorithm. You're a wonderful person btw, Trace. Always so deeply caring. Keep that part alive forever, brother. ✌️
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". 🙂
I love Dianna and her YT stuff, so when I found out she had long COVID I didn't end my support because she wouldn't be making videos, I added to it to help them get through this... I hope most did...
Thank you so much for making this video, Trace. It's been heartbreaking to see what Dianna's been going through. I was actually considering reaching out to see if you could put something out to help fundraise for her prior to you uploading this.
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.
Thank you. Its real. I have some long covid symptoms, CFS and PEM leading to shortness of breath. Luckily, I am a retired science teacher and have lots of time to rest. I can not imagine trying to work or raise a family like this. Please continue to educate us.
