Is Long COVID Real? What We Know So Far
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- Опубликовано: 15 мар 2022
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What is "Long-Covid"? What does it mean? The list of symptoms for “Long COVID” last long after you've healed from the illness. But the more we learn about it, and how it is similar to other post-infection syndromes, the better we can help those who suffer from it. Find out more with Hank in this new episode of SciShow!
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Head to linode.com/scishow to get a $100 60-day credit on a new Linode account. Linode offers simple, affordable, and accessible Linux cloud solutions and services.
If you use them to calculate the ratio of the circumference to the diameter of a circle, do you get pi al linode?
The first Triassic pterosaurs from the Southern Hemisphere have been found in San Juan, Argentina. The paper has just been published in the British journal Papers in Palaeontology. I hope you can talk about that in one of your next videos, and how it changes our views on pterosaur evolution, since pterosaur fossils from that time had only been found in North America until now.
Best Vaccine-Coverage is undoubtedly
Hbomberguy, but he didnt even mention Long-Covid and i dont think he will make a new Video
with it as the Center-Point.
But i still anted to recommend it to those that wanna hear more and get entertained with Science while having Fun.
Let's be real though, scishow and the mainstream media afraid of RUclips censorship got a lot of covid information wrong...
@@soulsbourne
It's a new disease. Everyone got it wrong.
Back in 2017, I caught a summer flu and was sick for weeks. Even months after, I felt fatigued, had brain fog and terrible headaches, and couldn't remember things as well as I used to be able to. But, every doctor I went to dismissed me as perfectly healthy and all my tests came back perfect. I felt like I was making it all up. Luckily, these symptoms eventually got better, but it took at least a year and I'm still not really back to where I was before. Learning about long covid made me feel a little more validated that maybe I wasn't making the whole thing up.
I believe you.
It seems like long-COVID is just general post-viral fatigue, which was already known pre-COVID. Though it can have other impacts beyond just fatigue and brain fog.
My girlfriend has suffered with this fatigue and brain fog for 6 years. It's had a drastic negative impact on almost all aspects of her life.
I'm glad you're on the mend. I'm sorry doctors wouldn't take you seriously. I've been down the same road with my girlfriend - thankfully we found a lovely doctor who did believe her, and that doctor went to the ends of the earth to at least get her a formal diagnosis of CFS/ME that she could use to justify her illness to the world. The doctor also got her involved in therapy groups for others with 'hidden' illnesses.
That sounds suspiciously like my experience with Mono when I was 23. I was _super_ sick for a month, and it took me the better part of a year to recover. The only difference was my Mom and my Girlfriend at the time took me to the emergency room (I was so sick I didn't even argue) and I was diagnosed with Mono, which they don't really do anything for. I was given antibiotics for a secondary infection I had acquired but was told I'd "Just have to ride it out." The next couple of weeks were awful, and the next 11-12 months sucked.
More recently I had some tests done (almost 30 years later) and was told I probably had hepatitis C at some point, but was clear now. Mono does a number on your immune system, so I can only guess that's when I got it.
Note: Mono is most often caused by the Epstein Barr virus, but it can also be caused by Cytomegalovirus. Mono is often called "The kissing disease" because both causes can only be transmitted by bodily fluids, like saliva. Or other fluids. I had just started seeing the girlfriend I mentioned above. 😅
Sounds a lot like what happened to my aunt. For years she insisted that the flu she caught had gone into her knees, but doctors dismissed her symptoms for years. Double knee replacement roughly 20 years ago after bone started grinding on bone after the cartilage in her knees deteriorated.
@@tarmaque both EBV and CMV are well-known for causing post-viral illnesses like ME/CFS and POTS. Unfortunately most doctors know nothing about ME/CFS and will blow off anyone with post-viral symptoms.
Post flu is well know but rare. I'd imagine it's about as common as post COVID (what we should really be calling "long COVID") but we just don't study it
I have severe ME/CFS for 36 years, been bed-bound since 2008. When Covid first appeared, I turned to my wife & said that I expect the number of people with ME/CFS to skyrocket. I wish I'd been wrong. I wouldn't wish this condition on my worst enemy. I spend all day, every day in silence in a darkened room. When I'm well enough, I watch videos or read, for short periods of time. Most of the day I'm simply just lay there & daydream, anything else stresses my body too much.
I was a healthy child but caught chicken pox, I was diagnosed on my 18th birthday, & I never recovered. I managed to get good qualifications although my first degree took 2 attempts: I crashed in the first year & lasted 9 months before having to take a year off from studying. Everything I've done in my adult life has been a fight, & I'm so tired of fighting. I want my life back, but I know it's not coming back. I keep on holding out for an efficient treatment plan. I don't want to lose hope, but I know there's no point holding my breath. It's not a sexy disease that will bring researchers fame & glory. It's only in recent years that medical staff have agreed there's anything wrong: for decades we were called hypochondriacs, malingerers or attention seekers. You don't get that will any other illness, do you?
Endometriosis is one.
Same attitude towards a lot of EDS and dysautonomia patients unfortunately. I was hit with dysautonomia and EDS symptoms right around puberty but was blown off until my stomach stopped working at age 20 then the puzzle pieces fit together too well to be ignored. Now that post covid dysautonomia is hitting more of the population its not dismissed as easily.
@@concernednoiseo1909 Yes & it's criminal how long it takes to get diagnosed. I was lucky, it only took me 4 years, probably because my Mum had it too, & my Gran. The average time worldwide to get diagnosis is 7.5 years. Imagine if men were left that long, in pain, hemorrhaging so much they became anaemic. They'd be throwing money into research the illness & potential treatments.
Look into mayo clinics chronic pain program. It focuses on centralized sensitization syndrome, which is kinda the umbrella term hovering over Fibro, CFS, IBS, etc... I was in the same boat as you just sitting in bed waiting for something to cure it, and that program actually helped me get a piece of my life back. Its not perfect...im not good by any means but im not sitting in a dark room anymore.
I am so so very sorry for your suffering y heart is with you I yslf have the condition 22yrs may as well have passed away your life is gone its an exsistance its absolutely disgusting how people have been treated with it, I once said to Adrian I didn't diagnose myself you referred me to a specialist who gave me the diagnosis so answer me this ..if its not a condition HOW COME IT HAS A NAME needless to say the response
Thank you for making this video. I am in this boat with long Covid. Im a 23 year old female with no major health issues before Covid also not a smoker. When I got Covid almost two years ago now I was extremely sick and hospitalized for two weeks on 4 liters of oxygen. After Covid I lost 80% of my hair, I now have sensory issues, I have chronic nausea, I was just diagnosed with tachycardia my heart rate sits at 140 and jumps to 180 randomly with no activity. (Blood pressure is good btw) I have breathing problems, I can’t take deep breaths. It’s been a constant battle. Im exhausted 24/7. My daily around the house chores are now difficult to do. It’s incredibly difficult to live with and i swear there’s something new happening everyday that I never had issues with before. My heart goes out to all of the people with long Covid, I know how you feel and you’re not alone 💚
I hope you’re feeling better by now.
Sorry to hear Taylor...grateful for a video like this that helps so many people. I also hope you are feeling better and better. In my research, there are causes that are simple. Of course as a practitioner, I cannot just recommend things unless I know more. Our bodies are more resilient that people think however, there is much coming at us that stress both our body and mind. Here to help and share my research and experience. Get well soon and keep positive and stay strong. Keep on going to get answers.
Jesus.. I’m so sorry. I hope you’re okay :(
I am so sorry, that sounds really hard
Hey I know this is an old comment, and hopefully you've had improvement. But I wanted to mention something since I'm in a similar boat.
I don't know if you've ever looked into it but a lot of people with long COVID get POTS, which comes with fatigue and tachycardia but doesn't necessarily have noticeable blood pressure issues. In fact part of the criteria for having it is that your blood pressure doesn't drop when standing even if your heart rate is up.
Covid causes a lot of dysautonomia (issues with the autonomic nervous system) and while pots is one of the most common ones there are a ton of other autonomic conditions it causes too. Might be worth talking to a good doctor about if you haven't yet.
There's also some promising treatment options for long COVID including low dose naltrexone. (Specifically low dose. It's used for cancer, dysautonomia, and autoimmune patients. High dose is used to treat addiction.)
I had Covid in September and now suffer from “Long Covid”. I have several symptoms but my memory loss (long term and short term), brain fog, and fatigue are the most debilitating. I no longer can do my job. I’ve fallen into deep depression and I mourn my memories daily. I spend everyday going through old pictures, emails, and texts to try and remember who I used to be. I’m hoping this will pass at some point. Thank you for speaking on this topic because I don’t think it’s talked about enough. Prayers for everyone still suffering from this.
Me too sometimes I don't remember who I was
These have been my most severe symptoms. It literally took away my sense of self.
The positive news is that after 9 weeks I am starting to improve. I'm far from "back to normal", but I feel like I'm on the way, however slowly.
Some advice:
Firstly, accept what has happened and try to move past it. Much more easily said than done and there will be good and bad days, but it will help to alleviate the psychological symptoms like anxiety and depression.
Secondly, get your diet in order - a low histamine diet with no alcohol - and try to establish as close to a healthy sleep pattern as possible. This will give your body a huge advantage in tackling the root causes.
Lastly, do things that tax you and your brain. It could be reading, practising an instrument, doing a quiz... Or it could be as simple as testing your memory of what you did in the last few days. You are already doing the right thing by trying to reconnect with old memories and elicit the old feelings. It is working for me. Socialising to whatever extent possible helps with this.
You CAN meet this head on and you WILL beat it. You just have to be patient, don't put yourself under too much pressure and make some lifestyle changes. I wish you all the best. We will win!
try 28 years cfs now long covid i have had enough
Jocely how are you now?
Same here. What breaks my heart the most, is that now I can't remember most of my daughter's childhood. She's the most precious thing in my life, and now all I have is photos to try and jog my memory. I wish I'd taken more pictures! She's all grown up and getting married soon.
In 1981 I had a respiratory infection. 11 years later I was finally given the diagnosis of post viral fatigue syndrome, Myalgic Encephalomyelitis. Now. 40 year have gone by and I’ve never fully recovered. Thank you for this.
My goodness. I thought have ME for over 20 years was bad, only to discover I'm a newbie.
Hope you are coping okay Melanie.
Is this the same thing as, 'chronic fatigue syndrome'?
@@chumbucketjones9761 , they all get lumped together. I do know mine began with a virus.
@@chumbucketjones9761
The current designation in the UK is ME/CFS. It just used to be ME.
There has always been some controversy about the names used.
@@melanieaveryeasthope3980
I contracted the flu and am convinced that was the cause of my illness.
My girlfriend caught a viral infection in August 2016, was sick for a couple of weeks.
She had a relaxed September, but was still a bit tired and ill from the infection.
We started our 2nd year of university Physics in October 2016.
From day 1, she was struggling to wake up. Struggling to make the 10-minute walk to lectures. Struggling to stay awake in the lectures she did manage to attend. Struggling to stay awake when she got home. Struggling to wake up from her frequent naps for her 2 evening shifts/week in a local pub. She rapidly gained weight, and was on the brink of failing the whole year of university.
It took the better part of a year to get her a diagnosis of post-viral fatigue, and later a full diagnosis of Chronic Fatigue Syndrome (CFS/ME). Her parents wouldn't take it seriously, just calling her 'lazy'. Her friends said the same.
She re-took that 2nd year two times (for a total of 3 attempts to pass 2nd year Physics) - every time her fatigue got the better of her and she couldn't make it through.
At the height of it, she needed 12-16 hours of sleep per day to function.
That was nearly 6 years ago. In 2022 she's still fatigued - maybe at 75% of the peak-fatigue she experienced in the past.
Things are only significantly better today because she's learned the limits of her body.
Some days she'll barely make it out of bed. Other days she might manage a 20 minute walk or a weight session at the gym.
She's barely holding down a job working 4x 8-hour days. She works, she has a 4-hour nap after work, eats dinner, talks to me for a couple of hours, goes to sleep again.
The 3-day weekend is to rest and get some chores/life things done, as well as do a little work towards finishing her degree online.
At least the fatigue/brain fog aspect of "long-COVID" seems to be very similar to what my girlfriend is living with.
I would not wish the illness on my worst enemy. It is crippling. It is drastically life-altering. It's been deeply upsetting watching her life go from a healthy and capable girl, to some who is fundamentally disabled and incapable of performing many everyday tasks.
Scott - in case no one else tells you, it’s awesome that she’s still your girlfriend and that you’re there for her. Being the caretaker, even sometimes, can be a really rough and thankless job, and you’re often overlooked. So kudos, mate. I hope you both have a lot of support in your life.
(Also, make sure, if your girlfriend wants/needs to return to school, she knows that disability services exists and should be helping her get the accommodations she needs in order to be able to pass her classes.)
I suffered just like this after being knocked flat on my back for two weeks with flu aged 19, 40 years ago. I was already very skinny but lost 10 pounds in weight and it took me nearly a year to feel anywhere near normal again. The acute tiredness took longer to go and food and drink tasted different to me for months.
Scott, you are an awesome human being for still being there. Especially at the ages you guys must be. I’m kind of in a similar situation, but I can’t honestly say that if I were 20 years younger, that I’d be a hero and stay. Let me tell you, you are a quiet hero.
Scott, please continue to support her. My partner is there for me in a very similar situation, and you have no idea how much it means that you understand what she goes through and are available to support her without judgement. I got sick in August 2016 as well, and life has been so much harder since, but people like you make living more like living.
Have you looked at the mind & body program? . I’m convinced it got me better after 18 months with long Covid
I'm diagnosed with CFS and fibromyalgia. I developed both after a bout of the flu. Since the start my doctor has agreed that it was probably the flu that triggered it. We're not just overlooked, we're willfully ignored by doctor, governments and everyone else.
Read tms dr John Sarno
look I know everyone is gonna try and tell you to try something, but Mayo Clinic has a chronic pain program that focuses on the newest research for centralized sensitization syndrome which covers IBS, CFS, Fibro, and more. Its a 4 week program 8 hours a day at the clinic...its tough work, I didnt even think I could make it through a single day...but I did...we all did in the group I was in. I mean...its mayo clinic...trust in the fact that im not just giving you some random book to go read. You arent going to be cured...but you will live a slightly better life which is better than most of us can say as we struggle going from doc to doc with nothing really helping.
I got really sick with mono and was diagnosed with fibromyalgia shortly after. I've been diagnosed recently with CFS after 2.5 years of severe illness. I've had 2 mono reactivations in the past couple of years.
You're not alone. Hugs
To hear 1 in 4 experience long covid makes me feel so comforted to know I wasn’t crazy. I got covid in Feb 2020 and was having pain and was not back at full with breathing capacity for nearly a year and felt like I really wasn’t believed because it was so new. Luckily better 2 years on but I feel even better knowing it’s being taken seriously now for people struggling.
Did you have joint popping and cracking?
Hurts like Hell at The Time but Relieves the Pain a little 🤦🏽♀️ For Me, I'm in Pain 24/7 Usually 7 days a week but Those Very Special Days I'm Not In Pain 💝 Now that its getting nice out, I found a Love for Gardening 😊 Those Painless Days feel Like a Gift Now 💕
@@kathymitchell2822 I hope your doing a bit better now! Such a shame.
Honestly, as someone who's been suffering from similar symptoms from other auto-immune issues since 2016, I'm hoping people pushing for more support for long covid will help those of us with the same issues from other issues. It's tough.
Yes, please. Chronic brain fog has basically ruined my life for the past 5 years.
Post viral fatigue since i was 15. never had any real medical support or knowledge about it.
That's always the hope but calling it something new, and treating it like something new is half of the problem!
@@mudman1st
Then how do you know it is post-viral syndrome???
@@VariantAEC diagnosed by a doctor who said you couldn't do anything about it.
My mom has had ME/CFS for the last 20 years (most of my life) and this is the first time it feels like anyone cares and is trying to help. I’m devastated for people with long COVID, but I’m also really hopeful that this attention will bring about treatments for everyone with post-viral disabilities
Have your and your mom/family stopped eating dead animal parts and stolen bodily secretions from birds and mammals yet???
Could not agree more.
As someone with CFS, I feel the same way, but much, much more bitter
Couldn't agree more. I've been dealing with CFS/ME for 27 years now.
I can help your mom. My daughter have CFS for 8 years until I discovered the cause and fixed it in 2 days. Now, it takes minutes instead of days to find a and to eliminate the cause.
I have CFS/ME (and fibro, among other things) and I'm too tired to express how much this video means to me. Thank you and sorry for all the long haulers joining the ranks of the invisibly disabled... ❤️
I can help you.
see Dr Teitelbaums's books Pain Free 123 and From Fatigued to Fantastic. God bless ❤️🙏❤️
Shout out to another post infection syndrome, POTS! Another syndrome that more people are getting diagnosed with after COVID.
Really hope they can find some better treatments to improve our quality of life 💕
While its extremely comforting to watch such an accurate breakdown of the condition, there are people who already lost 2 years of life to long covid, myself being one of them. I've lost 2 years to suddenly being disabled at the peak of my late twenties, being an athlete and healthy individual at the time, just like many other sufferers out there. Was gaslit by doctors, people, and even friends countless times and am witnessing how slow the progress is. This looks nice on video, but my honest thoughts are that its gonna take a long long time for this to be properly understood and treated. Not trying to be a downer, its just that having no expectations helps me to cope with the fact that my life is gone as it was. I am unable to sleep, think, work, drive, have romance or socialize like I could not a long time ago. Basically every aspect of living and functioning is impaired. One thing this has taught me is that we are extremely fragile and nothing is guaranteed in life. Maybe one day this will just be a cool story of overcoming ultimate adversity. Stay strong sick fam
My genuine symapthies. I think this is the saddest part of this condition, is how much people lose and have to grieve (their former self/lifestyle/work etc...). And then have to face the secondary issues of medical gaslighting, judgements from family and friends and having to live with a poorly understood condition without any support. There are a lot more channels now even on RUclips where you can go to get more info, support and community. Long COVID is basically the exact same symptom profile as ME/CFS, just called by a different name, as you may have heard. Time Magazine and the Altantic have even done a pieces on it. I think because of COVID, society at large is getting a taste for what ME/CFS sufferers have been living with for decades. And sad too that it was never taken seriously enough in medicine all this time, research has been chronically underfunded and neglected, in spite of having the same disease burden as HIV/AIDs. We could have a had a cure by now if it weren't for all the negative attitudes and medical gaslighting over the long term. I think COVID is now what is going to be the game changer for research on all post-viral syndromes, fuinding is finally happening at a level where it should have been a long time ago.
@@thepaintedlady4637 I agree, evidently this hardship is already fruitful in its own twisted way. Just hoping that unlocking the me cfs mystery wont be bottlenecked by technology, but even that is progressing faster each day, so the prognosis is certainly better than it was pre covid. Thanks so much for your wishes!
You weren't gaslit, they just didn't believe you. Still sorry you had to deal with that regardless.
Were you vaccinated?
i am in the same place, as much as this is all real life hell, it’s nice seeing others being able to relate to you
We aren't just "overlooked". We are ridiculed and told it's all in our head. Fibromyalgia sux. Now that there is MONEY to be used for research, and now that doctors are being affected personally with the pain, maybe we will see a difference in how WE are treated.
It's not in your head
Especially when it's a female patient ..we are constantly gas lit
You are absolutely right - several years ago I was having a gynaecological operation. The anaesthetist visited, read my notes (that included fibromyalgia) and said “so you don’t have any medical condition, then?” I was so surprised that I didn’t know what to reply. He didn’t believe that fibromyalgia existed and was so angry that I had taken my usual pain medication prior to the operation (as a previous anaesthetist had advised me to do and topped it up with morphine) that he refused to give me any pain relief at all. I came round from the operation in excruciating pain and it took a doctor three hours of slowly administering the strongest pain relief he had to bring it under control (fentanyl?). Though the opposite seems to be happening now - any woman with unexplained pain gets told they have fibromyalgia, without doing any exploratory tests beforehand to see if it really is. Whilst feeling very sorry for people who have long covid, I do hope that more is therefore done to alleviate ALL these debilitating illnesses!
@@urmamasmamasmama It happens to males too, constantly. Theres just more girls with certain autoimmune diseases and other things we may not even know yet. it happens when a DR doesn't understand what the solution or cause is or wasn't trained to know for political profit orientated motivation. If you get chronic lyme disease you're guaranteed to deal with this.
And misdiagnosed/overdiagnosed. I have two friends initially diagnosed with fibromyalgia who were later found to have hemachromatosis. Their doctors looked at them, thought "vague symptoms, female? Must be fibromyalgia!" But they were never tested for the other disease as it wreaked havoc on their bodies! On the flip side, I have a couple of fellow RA sufferers who also have fibromyalgia and were dismissed by their doctors because they have RA. It's unlikely, sure, but not impossible for a patient to have both fibromyalgia and rheumatoid arthritis. Extremely unlucky for them though.
Thank you for this video. When I was a teenager, I had a particularly nasty ear infection that caused my entire body to shut down. I had to go on multiple rounds of antibiotics and fell into a dark depression because I was basically just passing out during the middle of the day from exhaustion. Somehow despite my physical symptoms, I was told it was somehow all in my head and that I should just magically get over it. Fast forward to adulthood and college nearly killed me. I barely graduated, and when I started working I could only work a part time job and still wound up passing out dead tired after only a 4 hour shift, needing the entire rest of the day to recover. It wasn’t like I didn’t have ambitions and hobbies, but I never had any time to complete any projects I wanted to do because working took 100% of my energy. Little did I know that this wasn’t normal and that other people had an abundance of energy I could only dream of. I wasn’t lazy! My body simply wasn’t keeping up with what my mind wanted to do! I luckily had a colleague who had been experiencing similar symptoms and that’s where I first heard of Chronic Fatigue Syndrome. I unfortunately think it’s possible I got a very early case of Covid (before testing was even available) which only made my fatigue, brain fog and forgetting words even worse than they already were, and I officially caught Covid in January 2022. I’m thankful that long covid has finally shined a light on Chronic Fatigue Syndrome, but I’m also super sad that people who were suffering with these symptoms were basically being gaslight and told it was all in their head, until people who never had to experience this debilitating condition experienced it for the first time ever post Covid. I hope people take this more seriously now!
Ahh that's terrible you poor thing. Just because they don't know how to do the test, doesn't mean it's in your head, science has a lot to learn still. Inflammation counts for a lot and can be quite well hidden. The same with hormonal changes, as well as oxygenation in the blood, or oxygenation uptake through the vascular system being lower. There is also endothelial issues affecting the circulation leading to exhaustion, these aren't tested for.
Thanks for making this video! I've struggled with ME/CFS for years now and its great that some more attention is drawn to these kind of diseases. As sad as its reason might be.
My mother had ME/CFS, I've seen first hand how much that condition sucks :( you have my sympathy
I’ve also had ME/CFS for years and I share your sentiment!
Same here friend!
That's the only good thing from this pandemic. People have a slight better understanding me/cfs...
I've had it for 12 years now. It's a big ol' bag of d*cks. As soon as covid started I knew it would be making new ME/CFS peeps in truck loads and, regrettably, I was right. Fortunately, it's great news for us and the fact that SciShow has made a video mentioning us fills me with so much hope!
OMG, Hank/SciShow, I thought I couldn't love you more, and then you made this video.
10 years ago at the age of 8 my otherwise healthy son got a bad Norovirus infection along with a bunch of other kids and then our whole village. Everyone else recovered but a month after, my son got all the severe symptoms again, then 4 weeks later the vomiting and diarrhea were back again. This continued over a year or two until it was 6 days out of 7. He slept on the toilet for a full year and then on the floor of the bathroom for a further year. During the day he was pressured to go to school and it was hard for teachers to understand why he couldn't. He was exhausted and in pain. All regular causes were ruled out. I did research and found a disease called Eosinophilic GI Disease that fit many of his GI symptoms including choking on food and sure enough he was diagnosed with that. Meanwhile after several years of malnutrition from the constant vomiting and diarrhea he had stopped growing and a bone age scan revealed he was 2 years behind his birth age (after a new medication at age 16 he suddenly went from 5'4" to 6'1" in 18 months).
But back to his tween years, again after research I had read about MCAS causing more nocturnal symptoms so did a trial of H1 and H2 antihistamines which was successful so he was prescribed Ketotifen, a mast call stabilizer which stopped the vomiting almost overnight.
He's now 18, diagnosed with Eosinophilic Esophagitis, MCAS, POTS, IBS (C&D), migraines and many more. He's had over a dozen procedures done in the OR, had NasoGastric tubes, had several hospital stays including a month long one to try to live with the pain since they just can't treat it adequately.
He has missed so much schooling that he went from a very bright future of studying biomedical engineering to a goal of eventually finishing high school some time in the future. At 18 he has only completed 4 courses so it's going to be a long time. As if the exhaustion of the diseases and post infection syndrome wasn't bad enough he also has exhaustion and brain fog from all the meds he needs to keep him functioning (he is on over $40,000 worth of medications every year). He is currently undergoing a cardiac rehab program to try to get his fitness and tachycardia to be in a better place but it's proving exhausting too.
There has been so little hope or interest in his case, especially from the school and medical systems (some doctors would drop him because he couldn't attend appointments in person while have a severe stomach bug like symptoms).
I can only hope that the awful occurrence of Long Covid will also draw attention to cases like my son and help ensure that other kids and adults don't have to go through what he has.
He Doesnt Forget To Be Awesome though and recently won a community volunteer award in our city!
Your son has an amazing mother! I'm so sorry for what you've both been through. That's incredibly unfair. Sadly, your experience tallies with many peoples' experiences with the medical community. I hope your son improves soon and he achieves all his goals. We need good people like him working in the medical and health care field. Wishing you both only the best!
Make sure he knows he can still have that future in bioengineering-or whatever else. He may not take the same path, but a lot of us don’t, and that’s okay. We end up bringing a richness of life experience to whatever we do. And who knows; your kiddo may be the one to invent or discover things down the line to make life easier for others like him.
Your son's story broke my heart 💔 I'm so sorry he has suffered so much and his childhood was robbed from him by this terrible condition.
I had a severe case of eosinophilia from an allergic reaction to taking antibiotics. I was really, really sick for several months before it was finally diagnosed and treated with a course of steroids. My entire GI tract was involved so I can empathize with what your son went through. It was like having the flu and Montezuma's revenge at the same time with a few hours a day where things felt sort of normal. Eosinophilia is a miserable disease because your eosinophils are attacking your body and when it's your GI tract the pain is tremendous. All I can suggest in addition to your son's current medical treatment is taking a probiotic with billions of cultures but only with his GI doctor's approval. I took probiotics for years to help normalize my gut. It really helped.
God bless you and your son. praying somebody listens to this episode that can help people that suffer from these kinds of illnesses. You are an awesome researcher and advocate for your son.
17 years ago I got EBV, and it developed into CFS/ME, and I also got severe fibro. Over time I have been slowly trying to claw my way back to health, and had made some small improvements, when I got Covid. I was so sick, I really thought I was going to die. My only concern at the time was who was going to feed my pets. The hospitals were full and wouldn't take me (which probably saved my life.) I've had Long Covid ever since. Any progress I'd made towards healing my ME has disappeared, and I'm worse off than ever. I am so weak, and so tired, and so confused most days. It's pure torture.
As per my experience as a long hauler there are some points for which we are worried:
1.Breathlessness
2.Palpitations
3.Fatigue
4.Brain fog.
5.Chest tightness and pain with tenderness on deep breathing
6.Blurring of vision.
7.Anxiety,and the fear whether i would be normal again( This is the biggest worry for all of us.)
I myself is a doctor and suffered with severe infection in april 2021 and still struggling with post covid symptoms.Every day is a fight woth some good and some very bad days.I have many radiologist and chest physician friends.According to them post covid changes in lungs ie scarring getting healed gradually unlike idiopathic fibrosis which is a good news.The recovery is very slow but fortunately many ppl are recovering.So we must be positive and let the time heal the body.I know its not that easy to live with these symptoms daily and going to bed daily exhausted but these are temporary and we ll be normal again. ALL THE BEST EVERYONE
Sir symptoms permanent or temp..
How are you now?
how do you feel right now? any improvements? any better
Hw r u now? All these r my symptoms.. But no improvement.suffering from 2 years... Please reply..
Sir please reply I am having chest tightness, palpitations , chest pain , dizziness for almost one year will it recover or these are permanent, please reply
As someone who is actually suffering from Long COVID, this video is greatly appreciated!
When I first contracted COVID, I just had a fever and flu-like symptoms for a couple of days, but almost half a year later, I'm still struggling with extreme fatigue and breathing problems.
It's cool to get some more insight into this stuff, because it's been having a pretty siginificant impact on my personal and professional life.
Highly recommend visiting somewhere high in altitude. Try visiting Denver Colorado or a high altitude location near where you live.
A friend of mine got her life back after learning that high altitudes almost eliminate her fatigue
@@flakgun153 I appreciate the advice, it's actually worth checking out. Although, since I live in the Netherlands - which might just be the flattest country known to man -, relocating to a high altitude place might be a bit of a challenge. Glad it worked out for your friend by the way, cheers!
Look up dysautonomia international!!!! This isn't the first post infectious disease and is almost identical to those like me who have post EBV and Flu chronic illness!
@@JeffreydeKogel The train down to Austria wasn't actually terribly expensive last I checked. I think NightJet runs Brussels-Wienna now as well. Shouldn't be impossible to find some small out-of-the-way hotel in the alps for a decent price.
Otherwise, Norway or Wales? Thought the first is pretty expensive and GB at the moment, well...
Incidentally, I was thinking about going to Norway this summer. Might be a good idea to look at a week or two up in the mountains.
I have been dealing with long covid issues for almost two years now and having more people talk about this brings me to tears because I don't feel so unseen. Thank you so much for talking about this.
Best Vaccine-Coverage is undoubtedly Hbomberguy,
but he didnt even mention Long-Covid and i dont think he will make a new Video
with it as the Center-Point.
But i still anted to recommend it to those that wanna hear more and get entertained with Science while having Fun.
Hugs. 🤗 Ive been coughing since oct 2019. I hope you recover sooner.
Have you stopped eating dead animal parts and stolen bodily secretions from birds and mammals yet? Most especially pigs!???
Get some vitamin d and exercise, or keep getting vaccinated then reward yaself with some beer.. also don't forget to make sure you are wearing ya stupid mask when you stand up lmao.
Did you have the Vaccine?
I have suffered with ME/CFS (it sounds weird when you say it backwards :p) for seven years. I am unable to work. I am basically home bound with NO assistance or disability. Just trying to get a dr or lawyer or ANYONE to talk me seriously is a frelling nightmare. I feel for the people suffering from this but I am glad that you are giving this some attention - make as many vids about this as you can. We need all the help we can get.
As someone with moderate to severe CFS, this video is very well researched and very through. I don't wish for people to get Long COVID but at least there is more incentive now to do research on CFS which has been mostly ignored for many decades.
One of my friends is going on a year plus of long COVID. Her initial infection was relatively mild but she is still struggling 15 months later. She still is showing documented heart and lung damage. Scary stuff. Keep safe out there folks.
Wow, that's crazy, 15 months is way too much and I hope she can get better. All the medical records in her case are quite valuable for the study of the condition.
Thanks and keep yourself and your loved ones safe!
@@Mtz2604 over a decade later post EBV and Flu and I'm *still* progressive in disease presentation.
Is she vaccinated? Asking for myself.
That's one major reason why it infuriates me when people keep saying it's "just a cold" 😠
@@amethystedmond8140 My symptoms got significantly better after dose 2, after one year and four months of debilitating illness. It's worth giving it a go. Some get better, some don't, I've heard both accounts.
Two years disabled with long COVID, still persevering and surviving. This is a great summation of what we know, thank you for your work!
I got off luckier than many people I know, but the fatigue and brain fog are killer. I have like 1/2 the energy that I had before and am now 'known' for losing my train of thought midsentence. It sucks. Take care of yourself, and lean on those you can trust & love.
@@FreeManFreeThought i guess i had long covid before covid
@@FreeManFreeThought I have shortness of breath and tinnitus for 16 months already. It's not difficult comparing to what other people have from post covid, but I can say my life is ruined. Can't do any physical activity due to not being able to catch a breath and tinnitus is driving me crazy. Sadly, I don't see science will be able to do anything to help me. So many researches and so little actual help provided. We'll do the same as ME people I am afraid.
Oh wow, I am so sorry to hear that. I also had long covid, it lasted 3 months for me, but was severe those months, like I would get up to shower, get so tired from a 15 minute shower that I had to go back to bed again, slept about 20 hours a day. I don't wish that upon anyone. I hope you get better soon mate.
@Dermot Fitzpatrick why not aspirin?
I lived with a nurse all thru covid. She was a front line worker, who cared for elderly patients. So she became fanatical in keeping covid out. And thanks to her we are still covid free. Even though she really pissed me off sometimes, after reading the comments I'm so grateful. We all have been vaccinated twice and one booster.
Good grief, the propaganda here! The injections DON'T PREVENT INFECTION OR TRANSMISSION!
Thank you so much for this. I appreciate you mentioning the disability issues at the end, and how an influx of new patients from long covid may lead to increased funding and research interest for post-infection/viral syndromes. I haven't had covid, but have been living with both MCAS and ME/CFS for many years. I am devastated for the many people dealing with long covid, but I am finally starting to feel seen.
Thanks for covering this. My mom had ME/CFS and I watched her struggles for decades to get care. I got ME/CFS when I was 14 from an infection with CMV, closely related to EBV (they thought it was EBV until testing). Like nearly everything in medicine I suspect there’s a genetic component to susceptibility. I’ve never had a doctor take me seriously as an adult when I speak to those symptoms, despite the record of dx, infection and family history. It’s surreal, but honestly, a relief, to see this disease get mainstream awareness.
I definitely agree with the genetic link. I was diagnosed with CFS/Fibro 20+ years ago and then my uncle was diagnosed 5 years ago. It could be a coincidence, but I don't think so.
MECFS is mast cell activation syndrome
Don't worry, they don't take you seriously as an adult either 🙂👍
I have no idea what you just said? What do those mean? Like the actual names of them?
I’m sure there’s a genetic component. My grandmother, mother, and me all developed fibromyalgia, which seems like too much to be a coincidence.
I’m glad you guys mentioned how medicine doesn’t take certain things, like fibromyalgia seriously. It feels like a modern version of the hysteria diagnosis- “well, she claims to be ill, but we can’t find anything”, assuming they don’t just pay you on the head and tell you to lose weight, or it’s just in your head.
#MostDoctorsAreBastards
What’s frustrating is that researchers have found all kinds of physiological abnormalities using methodologies and tests that doctors don’t use in normal practice. The “we can’t find anything wrong with you” line never takes that into account.
@@detectivewiggles
😂😆😂😆😂😆. So true.
@@detectivewiggles and then when you find that one doctor who wants to help your entire self, not just a symptom...we need more uplifters in the field.
Same with FND which supposedly is the modern day hysteria. It sucks so much. How anyone thinks people would litrally think themselves into these sort of situations is completely beyond me.
I remember way back in 2020 when experts were worried that some covid survivors were showing signs of a long term condition similar to those suffering with long SARS in China. As time went on and long covid became a recognised thing I literally said to a friend that I noticed the odd similarities to CFS/ME (as I'm a suffer with it myself) and maybe if we were lucky it would lead to more attention to this crippling disability.
I'm now so happy and relieved to see this is happening. Obviously it's still early days but as said in the video more attention and more research is ultimately a good thing and at least now there is more hope for the future for those of us who have been written off by many.
Thank you for making this! Over five years ago I got a stomach flu which triggered my normally mild asthma and I took an ambulance ride to the ER. When they discharged me I could still barely walk. Now I still have post viral: worsened asthma which is worse with exercise and various triggers including the cold, IBS/reflux, vocal chord dysfunction and fatigue (never been officially diagnosed because no Dr will say it). I had to put it all together that this is all post viral and I’ve always felt my immune system was out of wack but allergy test show nothing. Like everyone else posting, the prospects of Long Haul Covid have made things scary for me when a “normal everyday” cold or flu can send me at least to the Dr for a nebulizer. What you said about changing your career, you hobbies (aka what brings you joy), your life path and goals… all true. Also as a relatively still young person and as a somewhat kind of functional person I haven’t even tried to navigate the official “disability” world. I live in this gray area where every day is just a struggle to get the dishes done and work my part time job. Lots of things help, mostly holistic meds and then asthma meds -steroids I hate taking long term, but nothing has yet cured me. And I’ve had to accept that modern medicine basically doesn’t have the tools or resources or attention to try. Gosh I really hope Long Covid can bring attention to everyone with post viral symptoms and also that we get some more long term medicines. But also more empathy for people living with chronic illness often poorly defined or understood.
Try taking colostrum capsules (anovite has best product & price); and then yamoa powder for the asthma. Mix it into local honey. I had to take two rounds of the yamoa treatment but it is worth it. I CURED my seasonal allergies and nearly cured my asthma. I am on the lowest possible dose of inhalers. The colostrum really helps the fibromyalgia pain, knocks it down by about 70%, it's very helpful. No side effects from either of these things. Good luck 🙏
This is the best overview I've seen of chronic inflammatory disorders. It's a perpetually misunderstood area even by medical professionals. So kudos for doing your research and communicating so clearly.
I've had CFS/ME for 14.5 years, and I really appreciate hearing you take it seriously and give accurate information about it! We're all hoping to see some positive results from the Long Covid research, and I definitely empathize with Long Covid sufferers.
Did it slowly get better for you? CBD has made me much better but I’m looking for ways to improve. I already pace, take CBD, eat clean, and my only exercise is yoga and swimming. Any advice?
@@siobhanchristine-bligh183 Unfortunately, I'm one of those that just gets slowly worse over time. I've been pacing, taking all the relevant vitamins, I've tried every reasonable treatment I've heard of (which includes everything from LDN to acupuncture). Nothing makes a dent in it. I did hear about a high-dose B1 regimen, which I'm looking into trying yet. I have not tried CBD, as I haven't been able to find anyone to advise me on what kind to take. What has worked for you there? One thing that has helped some of the pain I get when I'm over-tired is a Low-FODMAP diet for about 2 or 3 weeks. That's the only things that's ever made any sort of difference. :(
@@dorthy79 sorry to hear it. Take 50mg of CBD a day at night as 1ml - if your in the UK buy it from cannary
Not diagnosed but also lots of CFS/ME symptoms since ~2007. Used to be much worse at the beginning, but still makes normal things quite a struggle sometimes. Stay strong!
Thank you for this video. I’ve had ME/CFS for 14 years and it is truly life changing 😔. Sending healing hugs to anyone who is struggling and praying for more research to help with these conditions x
As someone with fibromyalgia, which does not currently have a cure, my hope is that some of the treatments that come out of long-covid research will hopefully also treat the symptoms of chronic illnesses such as fibromyalgia.
I’ve had long COVID since March 2020. Still dealing with fatigue, developed arthritis (at the age of 21), joint pain even in joints that seemingly don’t have arthritis, ibs, and increased panic attacks. I’m glad this is finally being talked about more
You're vaxxed right? Seems none of the unvaxxed have long covid...
@@sj6404 I’ve had covid and long covid before getting vaxxed because the vaccines were not available in my country yet
How do you know those can be attributed to a respiratory disease?
@@sj6404 I have Long COVID, and I caught it before I could get vaccinated. I swear, you people are unbelievable. I actually do agree that it's your choice to get vaccinated or not, but gotdam you guys cannot resist pushing false information.
I'm sorry. I hope life gets better
Yes, thank you for the disability right blerb at the end. with the influx of people "suddenly" gaining a very debilitating and interruptive disability from covid, those of us who are already disabled are noticing a lot more fear from the able-bodied people in the world, fear of being disabled. and a lot of that fear comes from them recognizing that there aren't nearly enough support measures and widespread accessibility features available to those who are disabled, yet the stigma around disability prevents them from helping their disabled peers and themselves in the future (being elderly is a disability). And as much as it sucks that we keep finding that the world needs to be in crisis for change to happen, I truly think that the research and whatever comes in the future will help to create more supports for all disabled people and abled people.
I have POTS, Ehlers-Danlos, and some sort of autoimmune/mast-cell/chronic fatigue thing (possibly fibromyalgia, possibly MCAS) that already makes life extremely difficult (especially being autistic and having heightened perceptions of pain and sensory issues from that). Myself and so many other disabled people I know are so afraid of getting covid and having long covid (which would almost certainly be a guarantee because our bodies and immune systems are already weakened) because we don't know the extent to which long covid could affect us. And seeing mask mandates being lifted locally and no real sign of covid going completely away, we're all still indefinitely in quarantine.
Oh man, same hat on the probably MCAS/autism. It sucks so much, especially when MCAS takes away all your favorite foods.
I've always hated the stigma around disabilities, both mental and physical. I mostly have had experience with mental illness. My mom, my significant other and I all struggle from depression and anxiety while both my s/o and I have autism. The only thing I have that could be considered a physical disability is my asthma but my mom has had severe arthritis for as long as I can remember.
I honestly agree with the fear of getting covid and long covid because (I think) all my family is at risk with my mom being the highest as treatment for her arthritis involves immunosuppressants. My dad is probably next due to sleep apnea and I'm probably last because while I do have asthma, I also am young and I have a strong immune system. Even if I think I'm relatively low risk I still know respiratory illnesses bring me down. I especially dread the concept of long covid because of my history with getting sick. The wost part is never when I actually am sick; the worst part is always the weeks afterwards where my asthma goes into overdrive.
Thank you! I'm in the same boat as you, and I couldn't have said it better myself!
+
Have autism as well and am disabled as well. Hopefully stigma dissolves soon.
After struggling with post viral syndromes for over a decade, it is such a strange idea that the amount of people dealing with this is suddenly increasing drastically. I hope this means we’ll make more progress researching and treating this, but I also feel very uncomfortable and sad.
EBV was one of my triggers as well, they’ve even discovered I still have traces of it to this day.
I'm so sorry for the struggles you've had and how you have likely felt unheard for so long. If people can't see an illness or disability, they unfortunately seem much more likely to write it off as non existent. I wish people were paying more attention before but I hope that more research now can help everyone in the long term. I'm just so sorry you struggled with this when nobody else seemed to take it seriously.
I had COVID 7 months ago and I have not been the same since. I've had a lot of muscle and cognitive issues. I sure hope they figure this out. Stay healthy everyone!
No one will figure out for us. Except us
How r u now plzz reply
Brother how r u now plzz reply
how do you feel right now? any improvements? any better
@@sozinho_9894 after over a year now… I do feel better. But I am still not back to the same level of health I was before. I have NO stamina anymore. I used to be very active but now I can only stand about 10 minutes of exercise before I almost pass out. I’m always sore and tired. It’s quite awful. I also get sick a lot more easily than I used to. And I’ve lost about 10% of my lung capacity. I’m hoping this isn’t permanent. But thankfully I have no heart issues or anything too major.
One thing I find hopeful out about this whole thing: a lot of the post covid symptoms are similar to certain neurological conditions, like Depression and Anxiety. Those same conditions have had some evidence suggesting an immune/inflammatory component. This fits with the Diphenhydramine research along with a study from Feb that showed microbiome-related risk factors for long-Covid. Covid's sudden, highly public increase in these cases may lead to more research in treatments for autoimmune/inflammation triggered neurological conditions like this.
Heck, maybe we find stuff useful for Alzheimer's or other inherently fatal conditions.
Do you mean diphenhydramine? Hydroxyzine and Diphenhydramine are both antihistamines sometimes used to treat mental illness as well, but I’ve never heard of diphenhydramine.
@@dorissaclaire yeah typo.
It gets even more muddled when the results of these conditions (life affects as well as financial and lack of support from family many have) are such a severe load it GIVES depression and anxiety to sufferers.
Ugh. So many people saying this crap without realising that these problems are systemic in academia. If you search two disorders, there will be a paper somewhere that links the two.
Covid exacerbated this because it's a new disease with tonnes of funding being poured into it. How would covid even contribute to alzheimers? It's a respiratory disease.
I work in psychiatry and I've been vaccinated 3 times. I'm not a denier
@@wentoneisendon6502 first, I said "Heck, maybe we will". As in, "I have no idea if we will, but who knows". I'm trying to be hopeful here, not actually say that it is definitely true.
Second, did you even watch the video? The whole point of this video was that long-covid is an immune system issue. There's been a lot of research that suggests Alzheimer's is as well, at least in part. It's not that big of a leap. Or, if you want a different example, (I did say "Alzheimer's or other") what about Parkinson's? It is related to serotonin processing and both depression and anxiety can also be related to serotonin issues (hence the use of SSRI's). Perhaps a the long-covid immune response causes a shift in serotonin processing similar to early Parkinson's which could lead to new treatments. I don't know, but, again, I'm just trying to be a bit hopeful here, not submit a grant proposal.
Ugh. So many people jump to conclusions and start criticizing without paying attention to the actual statement they are criticizing going on.
As a teen suffering from ME/CFS, I found this really insightful. It is shocking how similar Long COVID is to ME/CFS, and that they benefit from similar management strategies.
I have been sharing coping strategies, and how my life has changed since developing ME on my channel.
Thanks for helping others facing similar challenges.
Thank you for making this this video Hank. More people need to know about this.
You've helped me better understand the last 1.5 years of my life! I'm lucky that my experience with both covid and long covid have been mild compared to others. Thanks SciShow!
This whole pandemic and all it's ramifications have been so heartbreaking. I developed CFS after getting mono, and I don't wish it upon anyone. However, I hope that the silver lining to all of this will be that they will finally start to do proper research on post-infection syndromes.
Same here ❤️
My husband (42) and my daughter (23) are both long haulers. Both have had long term issues with fatigue and cardiac problems. Tachycardia coupled with dangerously high blood pressures, with all tests coming back "normal" no matter what they looked at.
Hubby's cardiologist finally gave it a blanket DX of "pericarditis." He just finished a round of colchicine, and for the first time in two years, has not needed his nitro at all.
My daughter has a mix of respiratory and cardiology issues, brain fog, fatigue, poor blood oxygenation, increased confusion, still has unreliable sense of taste and smell. She was told she has POTS, and that it "will go away on it's own eventually." In the meantime, at age 23 she is on blood pressure meds, respiratory meds, and a neurological medication to treat greatly exacerbated tremors (she had essential tremors before Covid).
Something the damn researchers need to do is start looking to see if the virus is moving to live in the central nervous system somewhere. They really need to. I swear it's living there, because almost ALL of these symptoms are CNS based. Seems to me it would be a good idea to see if it's making a home in the body's nerves like varicella does.
As someone who has POTS. I would be wary if a cardiologist says it will eventually go away. If she is 23 more than likely no. In teenagers who have POTS (between 12-17) about half get better over time. I have had POTS since I was 16. And am now 21 with worsening symptoms. My mother has had POTS since she was 19 and is now in her 40s. Meanwhile my sister was diagnosed at 13 and is now POTS free. CNS research is critical with POTS and COVID. My cardiologist is one of the leading medical professionals on POTS and has said there has been a giant increase in POTS diagnosed since 2020. Most of the patients have had COVID in the past and had developed POTS. And there is a proven connection between POTS and viruses.
I have inflammation and pain and nerve pain so bad in my feet I can't get to the bathroom on my own. I got Covid BAD family was told to prepare for my death. I made it through then had to get the Vaccine and a lot of the problems are starting again. I'm scared 😨
Interestingly I also started having way more pronounced tremors as well as more shaking, anxiety and panic attacks after my second shot of the vaccines.
I wonder if it has something to do with the spike protein remaining somewhere in the body.
@@theresaoneill6525 sadly i can agree with you. I got chronic neck pain and something like POTS after vaccination. Fixed a vit D deficiency and as soon as i got better i get covid and symptoms return.... Now i get vertigo spells every time i start to move.... Ridiculous. Im barely 30. Perfect BMI if it matters...but i know viruses and they reek havoc on the whole body. Esp the nervous system! I have horrible sensitivity in all senses. I can smell when someone's in the kitchen washing dishes 12 ft away. Sound, Yes. I hate the sounds them make.
Seliah...I don't know if you can but if possible talk to your Dr about an MRI of the head and neck of your husband and daughter. My Dr insisted on one and they found I have brain damage associated with MS and I have never had any of this before. It is all caused by the oxygen deficiency I had from Covid. I'm keeping you and your family in my prayers..💜
Thank you for this video. I have a family member who developed long covid at only 19 years old and who is still struggling almost a year later. Not enough people know about this so thanks again.
Hank, thanks so much for doing this video, I am grateful that you have made a good and accurate summary of the issues. Really appreciate it because it will help raise awareness and understanding for for ME/CFS, LC and FM patients, all of whom deserve it after years of neglect and gaslighting. I really hope that the silver lining to the pandemic will be a breakthrough in diagnosis and treatments for post infection syndromes.
Long Hauler of 2 years here. Thank you so much for covering this, the more awareness there is, the more Long Covid sufferers are believed when we share the devastating effects that this condition has had on our lives.
I've been chuntering about long COVID ever since I heard about it. I've had THIRTY EIGHT years of post viral fatigue, or ME/CFS, and boy, would I welcome some support and understanding about it.
I've only had Long Covid for 2 years, but the experience has made me feel very strongly that we as a society owe everyone with ME/CFS a massive apology for not taking you more seriously. I don't think my pre-covid self could have really understood what this is like, but now I get it. You are 100% valid, and I hope more and more light is shed on both our conditions.
@@cloudberrytart Now imagine symptoms similar to Long Covid for over a decade + Aspergers (Autism), and people thinking that you are just lazy and shy..
@@1GTX1 I'm so sorry you've had to deal with that.
@@cloudberrytart Thank you for saying that, Carolyn! 💐💐💐
google mast cell activation syndrome
As a Long Covid patient, I appreciate that you are giving helpful and accurate information to the public.
I had one of the first dozen cases of CoVid-19 in Belgium in early 2020. This description is very accurate to my own experience of "long covid". Especially the part about having to adjust my life to new constraints. Thank you for posting this video. Perhaps this will lead to more public understanding of this condition.
It’s really cool seeing long covid be researched now! I got super super sick after a viral infection back in 2017 and developed POTS and Dysautonomia, and it’s interesting seeing post infection illnesses become much more prevalent after covid. Fingers crossed for a cure coming soon!
Or at least for doctors to know we’re talking about a real illness that’s causing real problems in our lives!
As someone who has struggled with ME/CFS for over 7 years so far, thank you so much for making this video!
Really informative and helpful video. I’m suffering with long Covid now, and am going through the expensive testing stages, and the ‘you’re too healthy to be sick’ nonsense. Thankfully, I am fortunate to have a partner and coworkers who understand and support me. The fatigue is so bad I’m down to 3-5 hours of work a day, then I’m completely exhausted. Some days I can’t seem to get up at all. I’ve got muscle aches, heart palpitations, shortness of breath, chest pains, and the list goes on and on. It’s like a random grab bag of symptoms and severity that gets pulled from every day. And Im so afraid that if the tests keep coming back normal, and I don’t get better soon enough, then I’ll lose the support I do have. I really do hope more is done for long Covid and all of the other conditions like it. Everyone deserves accommodations so they can live their best life. Also, be safe out there , especially with all the new variants. Getting too complacent, even once, can have very real consequences.
This is an amazing video, thanks for posting this!
Long hauler here. Dealing with heart issues, severe anxiety, depression and insomnia. Please spread the word about this condition and push for treatment.
I also am dealing with this. I had an anxiety disorder before Covid but after Covid I’ve experienced so much more anxiety in a short period of time than ever before. I feel like I’m back at square one. I can’t sleep, I can’t eat sometimes, I wake up with migraines and covered in sweat most nights. It’s horrible. I’m exhausted all the time.
There are treatments ruclips.net/video/PRh28j4Qeqg/видео.html
I've faced plenty of stigmatisation ever since I got diagnosed with mild chronic fatigue syndrome. Now everybody I know or meet accuses me of "just being lazy". I doubt sleeping 10-12 hours a day is remotely normal, though.
That accusation gets hurled against people w ADD too. Usually from people too self absorbed to notice other symptoms. And I agree w you, if you are suddenly sleeping 150% more post infection then there must be a reason.
@@nobodysbaby5048 "Lazy" is just the go to method of pretending health problems don't exist and that every trouble is merely a character flaw. Autism, depression, anxiety, dyslexia,... the list is pretty much endless.
lol I do that all the time you are just as lazy as me bro 😂
@@nobodysbaby5048 I have a friend who has a severe case of Ligma...
@@patrickmccurry1563 Would agree & support that statement. Blessings on you for saying it.
I'm glad you referred to this video in another video of yours. Very helpful information with those who have autoimmune disorders.
Thank you for this video! I'm am so grateful for channels which help spread information and draw attention to post-viral syndromes. Videos like this go a long way to combatting stigma by raising public awareness and validating this condition as real To me, it is really sad that in spite of ME/CFS having had a similar disease burden to HIV/AIDs, it has been enormously underfunded and under-researched for decades (with negative attitudes and biases within Medicine). It has long been dismissed it as mental illness, 'all in your head', malingering, or 'women's hysteria'. Interesting too that when a condition disporportionately affects women and that is poorly understood, the response is not curiosity and proper scientific inquiry, but rather a knee-jerk reaction of dismissiveness and 'it must be just anxiety or not real'. No one took it seriously for decades, and looks like the pandemic will be the game changer because so many people are getting a taste for what this condition really feels like (including medical professionals). Research funding has now shot through the roof. There's a part of me that feels angry, because had it been taken seriously the way AIDS had been many decades ago, we might actually have a cure by now. Instead, what were seeing is that COVID-19 has effectively doubled the number of people living with post-viral syndromes, and there are no adequate social resources or medical infrastructure to deal with the rising tide of disability and complex concerns that these patients have. It's all being invented on the fly. Right now, in my local community, there are no supports or services available for anyone dealing with a post-viral condition, yet it is widely known that this condition is so debilitating that these people do need extra help and supports with the tasks of daily living much like other disabilities.
ive had extreme fatigue since april 2020, when my a-hole housemate threw a party during lockdown and gave me covid. it sucks. i had to drop out of uni for a year and a half. it's also given me dysautonomia & IBS.
if you're fortunate enough to not have long covid, be kind to those of us who weren't so lucky
it took me ages to realise what was wrong with me too, since the initial infection was completely asymptomatic
@steve reyburn ...are you okay?
@@MotoCat91 Dude’s suffering from long covid
You are legally and morally entitled to beat the everliving, er, stuffing out of your housemate. Some people are just vile. I'm sorry for what you've been through and hope your situation improves soon!
@@TwoMarshmallows1 Morally, not legally.
@@Catlily5 Hang on, I gotta change some laws, brb. In the meantime, no one snitch, okay?
Thank you, from a person with a disability due to a chronic illness. 💖 Thank you so, SO much for your sensitive and thorough discussion here. I have Ehlers-Danlos Syndrome, a genetic condition (not post-viral) that can cause a lot of these same symptoms you describe in long-haulers, ranging from fatigue to even MCAS. I feel like this video is thorough in shining light on the issues people face being taking seriously with these symptoms, the hope that current research gives for future research and treatment, and importantly, it centers the experience of those in the chronic illness and disability communities.
All I wanted to add to the discussion is this: that a lot of disabled people (like me) are worried about the world reopening right now because of the risk of becoming a long-hauler. My symptoms are already disabling - I worry about the extremely high rate of long-haulers suggested in some studies you mentioned, and how a post-viral condition on top of my genetic one might make my functionality even worse. Protecting people from post-viral infection is important, too, and I feel like a lot of discussions around re-opening aren't addressing that, and only address the risk of death due to the acute illness.
(In b4 all the deniers come in and troll this comment, of course :P)
EDS! MCAS! SAME DRESS!
Very different genetic condition over here, but a lot of the same symptoms. You're attitude is so much more positive than mine. I really enjoy that.
Because to be honest, when he said that part about people unable to work or continue with hobbies they love due to fatigue my immediate reaction was just, "please, get in line. Do you know how long it's been since I could work without medication just for the exhaustion? Nevermind HOBBIES." Which, you know, isn't an attitude I would ever take with an actual person, so I know it's a horrible reaction to have.
I also have EDS! TWINSIES!! (I don't have anything intelligent to add here, and am trying to find some joy in spite of the fear around Long COVID)
I can totally relate! My condition is some kind of neurological genetic disorder, but the doctors couldn't even give it a name. It got worst about 25 years ago, over half of my life thus far, and I know EXACTLY what you mean about barely having the energy to live, let alone have hobbies. I've had SO many doctors who tried to tell me it's all psychological, only to have psychologists and psychiatrists who said it isn't and sent me back to the doctors, who sent me back to the psychologists and psychiatrists, and we repeated the cycle of "Doctor-Psychologist Ping Pong" multiple times. Even if you get a doctor to take you seriously, once your body acts in ways they don't understand, they abandon you, saying "I'm not an expert on your condition". No duh! Who is?!
I've been wearing a mask since three years before COVID because a normal cold someone else would recover from in a couple of days is enough to make me deathly ill for 4-6 weeks. I don't want to know what COVID would do. At least, for once, being home bound is, I suppose, a blessing because I'm less likely to be exposed. Still, my fear is that catching COVID would simply be too much for my severely-weakened body. I'm already dealing with the effects of diabetes that can't be treated (my GI system barely works in the first place, due to the neurological issues, and the several oral diabetes meds we tried left me bedridden and unable to eat, and they can't give me insulin because my nerve endings react in permanent way that involve orders of magnitude more pain than any shot has ever caused, extreme sensitivity to touch that effects even what clothes I can wear, and loss of muscle control). This means I also can't have needed vaccines like the COVID and flu shots. It feels like I'm living on a wing and prayer most days, despite my best efforts to keep this body of mine functioning. It's a battle I know I'll lose someday, but every day I buy myself is one more page I can write, and, for me, that's worth the pain and the weakness and the daily struggle.
I have EDS as well, with MCAS and POTS. A part of me is very excited to see what kind of research this might bring up for us. Even if the reason for the illness isn't the same, it sounds like the treatment for some of the symptoms could be very similar
This video is great. I didn't know about how these symptoms followed other infections, but I know that since I got sick in 2020, I've not been functioning the same. My COVID case wasn't bad, but so many of these symptoms just haven't gone away. They ebb and flow, some days worse than others, but never gone. It's nice to have somewhere to start.
How are y
I got covid over a year ago, and I still need to take a nap almost every day, I struggle with concentrating and I forget things all the time. This is coming from someone that used to study 8 hours a day but the last two semesters of bachelor's was a real struggle. And I'm having some debate in my head about getting my PhD, because of all this.
But I appreciate knowing more and understanding it as a biologist.
How r u now plzz reply
@@yaqobsuleiman2097 most of the long COVID stuff has gone now. But it took a long time definitely
When I was 23 I was working hard towards a big promotion and worked my way through a really bad cold. Within weeks I developed constant allergies, severe fatigue, brain fog, rashes and muscle pain. Sent to a specialist who sent me on a battery of tests and the only thing they found beside the allergies was that I had had Glandular Fever. It's been 32 years now and I still deal with a range of debilitating symptoms which every doctor swore to me I'd get over in a few months. It robs your life, and your friendships and your dreams but it's never been considered a disability, just malingering. I know Long Covid is related and I hope that the medical profession now takes these symptoms seriously.
I'm so sorry for what you've been through. It's heartbreaking how quickly friends (and even family) will abandon someone who's sick and needs their help. I hope you have good people in your life these days!
ME/CFS doesn't make you tired it gives you profound debilitating fatigue. Referring to it causing 'tiredness' gives people a very inaccurate view of the condition, and perpetuates the idea that people with ME/CFS are 'just lazy' because 'we all get tired.
Much better description..
Right. We're literally walking into an identical psychological trap we fell into when Depression was permitted to be used as a catch-all for 'sadness"
@@SilverAura .. and YES, one does get severe clinical depression when after years of suffering ME/CFS/FIBROMIALGIA all you get is at the most is stupid blank looks and silence or hurtful questions or suggestions… “Ohhh yes, ageing aches, no one is immune !”
Agreed - fatigue so severe you often can’t get up to go to the toilet without help and spend 18 - 24 hours a day in bed - that’s not ‘tiredness’ that ‘everyone gets’ thats utterly and almost continually wiped-out. Not what normal people experience at all (except parents of a new born maybe). For normal folks try having a couple of weeks where you sleep no more than 3 or 4 hours in every 24 and then you know what it’s like - and how you function with cfs/me - except it pretty much NEVER gets better than that and sometimes gets even worse.
The worst thing is that nobody believes you feel like S_ and asume it's a psychological thing.
Thank you so much for talking about this ❤️
Being a sufferer of CFS and Fibro, I have always suspected that all these syndromes were linked in some way. Lets hope they find some answers soon, because life is just an existence, which is no life at all.
I have been waiting for something like this. Thank you!
Same
You've been waiting for this , why not go see a doctor ?!
@@kuntamdc lol
@@kuntamdc seriously? I'm guessing you didn't watch this video. I've seen six doctors. How many have you seen to get a functional sense of humor?
Thank you for making this video. I suffer from fibromyalgia almost my whole life. I learned to live with it. As I was told to do because of the stigma. Now in my 30th people still think I'm lazy or say that they have a bad day too sometimes. And it gets worse, because now I also got long covid or acting up fibromyalgie depending on how you look at is. So I'm very grateful for people how try to make sense of these illness and make me not feel crazy
I'm so glad to see discussion of ME/CFS in a more public forum!!
Thank you for talking about post-infection syndromes. As someone who has CFS/ME, Fibro and POTS I wish people understood exactly how debilitating these chronic illnesses are and that you should do everything you can to protect yourself against infection and serious disease. Just because you’re not in the age groups that have the highest death rates does not mean that you will escape serious complications after catching Covid-19.
Thank you for the clear video and the words of understanding and support for the sufferers of post infection illnesses. Very lovely. As a long term lymie, it is good to hear that the public image is shifting a little, even though I am so sad that it is caused by so many new people suffering along with us now. Hang in there new folks! And come hang out with all the online patient groups of the illnesses that Hank mentioned. We have a wealth of experience, and we might have some tips that can make your life a bit more liveable again.
It’s nice to see a video about this. It doesn’t get talked about much. Had COVID twice and I’ll still dealing with the issues and trying to get to the bottom of the issues. Still trying to get answers with the immune system issues.
Thank you for this comprehensive and detailed video! Very informative
Okay wow I wasn’t expecting this video to make me tear up for being seen , as an afab person who suffers from fibro along side long term Covid effects , the idea that this might lead to some incredibly necessary changes in the way these disabilities are seen is very emotional for me it’s like finally seeing a little light at the end of this nightmare tunnel
I was diagnosed with fibro over 40 years ago and had breakthrough covid last August. The aftereffects of the Covid felt like a real bad flair. If it wasn't for the anosmia and palpitations I wouldn't even suspect that I had long covid. Fortunately I started getting better about a month ago. I am following the new theories and hoping they lead to getting rid of the fibro too.
March 4th the US Health Agency announced the investment of $1 billion in Long Covid research. Check your HMO for a Long Covid Clinic to get the newest treatments and care.
@@katiehettinger7857 idk if I would qualify for research for long Covid considering I suffer from something incredibly similar as well since before Covid but I hope the people who are only suffering from LC see this and try to get help and some a say about it.
Right? Although I didn't tear up as I kept going "HECK YEAH BUD!!! HANK GOING HARD FOR US!!!"
I honestly can't believe I'm watching this with my own eyes.
Had ME/CFS for over 20 years.
Not surprised that people may be affected by post viral symptoms.
Thank you for a sympathetic understanding of the illness.
I’ve been suffering from Fibromyalgia for decades, my earliest memories of the pain is 9yr my whole life has been a struggle to keep up mental and physically with friends and family. It would be nice to one day be able to be on an even playing field, pain free and clear minded.
Holy crap this is an amazing video. I'm a Long Hauler and am not that bad thank goodness, but I've been angry about how little care I have gotten and how it has negatively impacted my life. This video was super thorough and made some really smart connections. Thank you SO much for doing this.
As someone who had EBV at 14, which then caused multiple sclerosis at 20, I have many of these symptoms. Hopefully, long COVID will motivate doctors to do more research on conditions that affect the Central Nervous System.
The US health agency is investing $1billion in investigating Long Covid. There are already studies here in the US and Europe underway to reveal the mechanisms and treatments.
@@katiehettinger7857 Israel doctors refuse to accept these, and they refuse to give us compensation for thier mishandling
Don't hold your breath. They'd lose all their profits if they studied the actual causes of diseases. _They don't want to help you. They want to make money off you._
Be sure to do everything you can not to also get covid. Covid can re-active EBV.
Thank you for making this.
I had long covid and it felt like I was in this constant stage of insomnia and anxiety.
As a Long Covid / ME-CFS patient who obsessively keeps up with the studies, the research here is excellent! Bravo, and thank you.
This video makes me SO PROUD to be a long time SciShow supporter!! As someone with a rare and misunderstood disease (full body CRPS/RSD), I’ve faced a lot of similar discrimination. When this video started playing, my mind kept inserting “just like ME” every 5 seconds, lol. So when you guys took the time to point out the similarities, I was ecstatic!
As someone who has struggled with CFS/ME and fibromyalgia for years, I also noticed the similarities in my experience and the experience of people with long COVID. I'm glad I'm not the only one noticing these things, and I'm so hopeful for the future of possible treatments for these post-infection syndromes. Thank you for this video!!
The overlap between these symptoms and Ehlers-Danlos Syndromes is also interesting. MCAS is comorbid with this condition as well
I was wondering about this too as it's a possible diagnosis of mine. It's amazing how it all seems to be the same constellation of symptoms/comorbidities.
Yes! I have eds, and the number of people who have POTS-like symptoms seems very high.
Yes it is interesting! I have MCAS, EDS, and POTS. (Also "high functioning" autism & ADD.)
Haha ya, I have hEDS, POTS and MCAS (plus other illnesses). Gotta love that, oh so wonderful trifecta
Would love if there can be an update on this video. This is really important information, and I'm so grateful this video exists.
MCAS, ME/CFS, and just general brain fog are things I've struggled with for a few years and more than just that, I often struggled with getting people, doctors included, to understand what I was going through. The existence of Long Covid has been a blessing in disguise for me and others like me.
Thank you so much for this. In our area the requirement for masks has been almost completely wiped out but I still wear it in stores, keep my distance from people and wash my hands frequently. I do not think we are completely out of the woods yet and this video reminds me that it is a very complicated disease and it is better to error on the side of caution.
Me too, people may wish this was over but the virus is calling the shots and as long as it is producing new variants it is best to be cautious.😀👍
Yes I do too...I wear a mask n wash my hands.
Post-polio syndrome is another illness that has often been lumped under CFS, except that it is progressive and can lead to paralysis, like the polio infection itself. PPS shows up years or even decades after a polio infection, and is currently affecting many older people who got polio in the 1950s.
Wow, I had no idea! Thanks for sharing. 💖
People who didn't live through polio often don't realize that, for most people, polio was a bit of malaise and diarrhea. Long Polio was the now-famous paralysis. It puts a dark perspective on our current situation.
my Mum has it
This is GREATLY appreciated. As someone who had COVID about 3 months ago, I was super concerned as to why I had intense fatigue and ongoing neurological issues. Im happy to finally have a name for what is happening to me
Same here what neurological symptoms you have how you treated
How are u
@@SocialTrendsIndia how are u
Thanks for the upload. My whole family came down with the disease and we all recovered uneventfully. My father, who is the healthiest one of all of us, never had a fever or barely a sniffle. 3 weeks post recovery, the virus mutated and went into his brain and he was dead within 48 hours. It was the most horrible thing I've ever had to witness in my life as he was my best friend. My heart is still breaking as I miss him so much 😭😭
🙏🕊️💗🙏
@@ocelotcat ❤️ thank you
Almost two years in to the pandemic, I finally got a mild case (fully recovered in
@Sadia Sharmeen same here, we have been lied to. Demand compensation and clarity in real reporting
@@snikrepak Lied to about what? Didn't the whole world shut down to stop people getting this disease? Did we not all start wearing masks to stop us getting it? Where was it implied this disease is mild?
I caught COVID for the first time only recently and spent the entire time fretting about this, especially after I developed a repeating cough after the fact. It's been about a month since then and I seem to have fully recovered but god did it infect me with a new strain of ANXIETY if nothing else.
Same!! It Worsen my anxiety
Its important to have a positive outlook as it improves recovery
Try taking NSAIDs -cytokine production will be through the roof during and after infection
Is the anxiety worse with sugar. Mine was. And now its mostly in remission.
Anxiety is a natural response to a dangerous situation which the outcome is uncertain. It a survival skills, it makes you pay attention to your body, activities and surroundings. Glad you are healing and no longer need it.
I only found out about CFS today, and literally a few minutes later, RUclips recommends me this video. I'm really hoping my symptoms are just temporary and I really feel for people who have to go through this on a daily basis.
In my case, I had a cold a few weeks ago, and about two weeks after that I started to develop cramps in my hands and feet, and now I have aches all over my body. Not sure if this is related to the cold I had, and I'm hoping this is a passing thing and everything just resolves by itself as randomly as it had started.
thank you SO much for this video. i have fibro, my partner likely has CFS/ME, and of course birds of a feather etc so a lot of my friends are spoonies too. some of the disability advocates i'm friends with have been saying that long covid looks to them like CFS/ME, but i didn't know there was suggestion that CFS/ME, fibro, and MCAS were potentially all post-viral syndromes. it's really good to know that current research backs up what disability advocates have been suggesting. thank you for talking about disability stigma for these deeply misunderstood and under-researched disorders. i hope you're right, and continuing research will be the silver lining in this that will help more than just "long haulers". hopefully the stigma associated with these nebulous and extremely frustrating conditions will soon be a thing of the past.
Great video! I had COVID exactly a year ago and I had several post covid symptoms such as lost of taste and smell, fatigue and I went to therapy due to random pain in my left knee. And I feel like everything is just more heavy to do since those days. This blows my mind since my covid infection was not a big deal, i didn't even have that difficulty to breathe while I was recovering yet I'm still having all of these long covid symptoms. What a weird thing COVID is man. I am happy we are starting to pay attention to this topic.
Just recently found out I had this, and was surprised to see a video about it considering I honestly had never heard the term until then. Had Covid (and not bad at all except for a cough lingering for about 3 months) back around Thanksgiving so it's relatively new for me. And yes, I already had the vaccine and boosters. While I had already just lost my job a month prior due to COVID running it out of business, I can't even function a in a similar workplace anymore. It's making my life a living hell. I don't think I have any lasting physical damage (at least no doctor has ever found anything), but on top of the chronic fatigue I already had, my memory and mind fog has made it impossible to hold a job let alone be a functional human being. I have to set alarms for anything important and label it because even if I set an alarm, I am likely to wake up not knowing WHY I set the alarm.
As someone who had been working the last 13 years straight doing the the same type of work (mostly food service and hospitality) I now function like someone who started a week ago. I would start forgetting what someone just said to me a few seconds ago, forgetting what I was doing while I was doing them, and forgetting the names of the people I would work with every day, go into panic attacks over every little thing all of a sudden because I KNOW that I should know all of this, but I just can't. I've even been having trouble understanding what people say. I can hear what they say, but it's like my brain can't put together the syllables into understandable words many times. Pretty much, I am a useless worker. If the place hadn't gone out of business, I would have probably left out of embarrassment anyway.
I honestly don't even know what to make of it or what to do. I've been sitting here unemployed for going on 4 months and it's no surprise that all of this has caused chronic depression and great anxiety. Even though I'm new to the term, it's extremely important to me to have seen a video like this because it validates what I've already been told but refused to really put much stock into and makes me realize that this really is an issue, even if I tell myself I'm just being lazy. That said, I don't think it can be understated how much this can affect a person, no matter how young, healthy, and able they may have been before getting it.
(honestly just had to get it off my chest. Mostly just rambling)
You are not alone. You have to be your own patient advocate, or doctors will dismiss you. They don’t like patients with health issues they can’t easily diagnose. Good luck and take care of yourself.
I have those Same Issues but For Years now! It is Definitely Frustrating as Hell 😢 I have RA & Thyroid Cancer survivor 🦋 Yet I Feel like I'm Slowing Deteriorating & I'm scared! I'm alone with 2 furbabies & I've pushed Everyone away 🤦🏽♀️😔
It is becoming more common knowledge since COVID. Major news outlets are now covering this because so many people are affected. The sad part is, post-viral syndromes have been known about for decades but only until recently in 2015 were formally validated as real medical conditions. We could have a cure by now if the medical and research community had taken it seriously at an earlier time, rather than just dismissing people as mentally ill, imagining symptoms, malingering or having 'women's hysteria'. Long COVID is literally the exact same profile of symptoms as ME/CFS, were just calling it something different.
Wow. You’re comments are a mirror image of my current situation 2 months after Covid with mild symptoms. Thanks for taking the time to share. Obviously we are not alone in this fight
This was amazing TY
Brilliant video- thank you