Long COVID: What Do You Need to Know?
What happens if you contract COVID-19 but never fully recover? This is the reality for Long COVID patients, who face a condition that lacks a standard diagnostic test, treatment, and scientific consensus. Long COVID patients also face stigma when friends, family and medical providers underestimate the severity of the condition. On top of that, these patients often face challenges accessing disability benefits. In this episode, explore what we know about Long COVID - and other elements that remain a mystery. The Vitals team sat down with Ed Yong, Pulitzer Prize winning journalist and author that has covered all aspects of the COVID-19 pandemic including reporting on the existence of Long COVID. We also learned first hand, from Margot Cage and Charlie McCone, what the reality of living with Long COVID looks and feels like today.
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Find our experts and hosts:
:: Sheena William, RN ::
Twitter: @Keepingitkinky1
Instagram: @keepingitkinky
:: Alok Patel, MD ::
Website: alokpatelmd.com/
Twitter: @AlokPatelMD
Instagram: @alokpatelmd
:: Ed Yong ::
Ed is a journalist who covers COVID-19 and Long COVID. Yong won a Pulitzer Prize for his coverage of the COVID-19 pandemic. He is also a New York Times best selling author and currently reports for The Atlantic.
edyong.me/
:: Charlie McCone ::
Charlie is a Long COVID patient and advocate.
www.theminiadhdcoach.com/
Twitter: @loscharlos
:: Dr. Margot Gage ::
Dr. Gage is a social epidemiologist, assistant professor at Lamar University, and a Long COVID patient.
www.margotwitvliet.com/
Want to Read More?
Recent research, common symptoms of Long COVID
www.ama-assn.org/delivering-c...
CDC and NIH on Long COVID:
www.cdc.gov/nchs/covid19/puls...
www.cdc.gov/coronavirus/2019-...
www.nih.gov/news-events/news-...
covid19.nih.gov/covid-19-topi...
www.niaid.nih.gov/clinical-tr...
Ed Yong’s reporting on Long COVID
www.theatlantic.com/health/ar...
Does vaccination protect against Long COVID?
www.nature.com/articles/s4146...
www.bmj.com/content/380/bmj.p491
www.health.harvard.edu/diseas...
More on Long COVID and stigma
journals.plos.org/plosone/art...
Brookings Institute report on Long COVID and unemployment
www.brookings.edu/articles/ne...
More on navigating disability benefits with Long COVID
kffhealthnews.org/news/articl...
Long COVID support groups
www.nbcnews.com/news/nbcblk/b...
This episode of Vitals is licensed exclusively to KZhead.
00:00 Intro
01:39 What is Long COVID
02:46 Ed Yong, reality of Long COVID today
04:14 Margot Gage talks about her Long COVID diagnosis
04:59 Charlie McCone talks about his Long COVID challenges
05:51 What it's like living with Long COVID
07:53 Similar to other medical gaslighting examples
09:04 Who is most vulnerable
11:40 Recovery is possible
Thank you to PBS for taking this issue seriously. Including people who have long Covid and people like Ed Yong, who has researched it in depth, is crucial. Too many interviews are done with 'celebrity experts' who minimize the risks of Covid, the incidence rate of long Covid and the horrible experiences of those with long Covid. This was very well done and appreciated.
I second this motion
They don't tell you that if your not vaccinated, you have a high likelihood of getting Long Covid. Get vaccinated, or learn to use horse paste or HCQ. There's no excuse for getting long Covid.
Vaccine injury*
I've never had Covid 19 and yet i'm suffering similar symptoms as being described by victims of 'Long Covid'. My Post Vaccine symptoms are dismissed as being imaginary.
Dianna, the very much loved host of the Physics Girl KZhead channel, has been suffering terribly from this for months. She has always been very energetic and now can barely move.
Vax., now COVID - see sense for God's sake!
That's when I first learned about long Covid. There tends to be a pattern with tragic stories of great people but that could just be me.
She sent me here. We love her!
🙏🏻🙏🏻🙏🏻😷😷😷
What can we do to heal
I got covid Christmas Eve 2021 and I was sick in bed for over 5 months. Took me almost 9 months after to even have the energy to wash dishes or take out the trash. I couldn't do either. I would wash maybe 2 dishes get tired and go sleep for another 10 hours. Going the the market for food was not only mentally exhausting just knowing I had to go, actually going knocked me out for days. Just thinking about doing anything is puts me in a panic stress because I know even today it's going to be hard. Having to take breaks just to get dressed. I have no income and my savings is just about gone. I have tired to fill out the Disability but I can't seem do it. I hear all the issues of others not getting it makes me just me not even try. it's too exhausting to even start to even get turned away. Having this brain fog makes it all just too much. Living alone is just better right now. i can't even take care of everything for myself no way i can deal with someone else again. I cant stand this way of living. I hope one day I just wake up and it's all gone. I miss my life. Covid didn't take my life but it sure did take my way of life. I breath but don't really live. UGHhhh
So sorry to hear you are going through this! Don't give up.. many people even with long-term symptoms have eventually regained health.
Same here. Sounds like my story.
You can heal, don't give up.
Hey how are things going? I am still the same. Hope your a little better. It's so hard living like this.
I’m at 2.5 years of it. When do you recover ? I’m losing hope
This is a great piece. Really brings it all together in terms of the gaslighting, psychologising, the infection-associated chronic illness landscape, and the degree of disregarded expertise in the patient community. Pieces like this are important on the road to moving past all these obstacles.
I hope the research into long covid gets people to realize a lot of chronic fatigue-type conditions are probably post-viral syndromes from other diseases.
Only silver lining would be treatments for all the millions already suffering autoimmune disorders. 🤞
Yes, and research labs better stop making new virusses and release them.
I hope that you all will encourage local researchers to check into low-dose naltrexone because it is looking like a possible treatment for fibromyalgia and ME/CFS!!
I've seen over the last couple of years researchers are starting to look into potential viral causes for all sorts of diseases, such as Alzheimer's and MS.
AMEN
Something like 6% of the US population being unable to effectively contribute to society or the economy is terrifying to think about
Everyone that ever dismissed anyone with these illnesses prior to the pandemic have played a role in the suffering of millions today with Long Covid . Doctors, and the public. And today they're still not mentioning ME. It's abhorrent.
This needs much more attention, people need to see the significance of this.
How about reminding people to get updated. There's no reason for anyone to take the chance. Get vaccinated/updated. And please take your love ones along.
I feel really bad for people who are not getting the disability they need. Back in 2010 I was so disabled with pain, braingfog, and stress that my social worker was able to get me immediate disability. I never went to a court or had a lawyer. But the paper work and tests really overwhelmed me. I was actually sent to a physchologist first because they thought I was having a nervous breakdown. My rental house had burned down leaving me homeless with a 17 year old and a broken foot along with disc issues. I had no money and could not work I was 59 years old. People who recover from long covid will not stay on disability if they can work. Unless you have a roommate you cannot make it on the small amount you will get. I wish the government would understand this and let younger people get disability when they clearly need it.
It’s a pandemic in its self My life has gone down the toilet. I had to sell my caravan, cancel my travel plans and buy a small unit to live in. Worsened asthma, Micro clots, Pots & MCAS. I was gaslighted by many Doctors and emergency. I now have a Doctor
Did you take the jab?
lucky you, best my brothers doctors do is say im sorry youre still feeling like this 😂
If you gotten the vaccine, you would of never gotten Long Covid. get your vaccination and be sure to stay updated.
Are you serious????? I did get the Vaccine and had shingles 3 times after Then COVID Now long Covid The SPIKE PROTEIN caused the damage. Pull your head out of your but
@@dmitrijsmironovs7513My current Dr just smiles and nods his head. My job says I have "attendance issues" and I'm playing them. I'm planning to take early retirement.
As someone with some of those other chronic & autoimmune illnesses, I have to agree that the issues we’re seeing with long covid are definitely not new! Including the medical gaslighting (it took at least 12 docs over 3+ years to get a fibro diagnosis, and closer to 10 years for some other conditions). There’s also a lot of overlapping symptoms (PEM being a major example) and eerie similarities in onset. I have fibromyalgia, and i also know people with ME/CFS, that predates the pandemic by many years. For many of us, our illness seems to have been “triggered” by fairly common/mild illnesses like run-of-the-mill cold viruses or bacterial infections. A few months before my fibromyalgia symptoms started or became really noticeable/debilitating, I had a really nasty sinus/ear/throat infection and bronchitis. Some doctors speculate that these kinds of chronic illnesses can happen when the body fights off an infection but then the immune system (or other systems) doesn’t get the memo to go back to normal, non-infection levels of activity. One of my doctor’s once described fibro pain to me as the pain receptors malfunctioning (like a volume dial, where my baseline got messed up so now most people’s 1 feels like a 5 to me). All of this could explain why symptoms and severity vary so much between patients, and why it is so hard to find simple diagnostic tests or universal treatment plans. If one person’s COVID infection caused a bit of lung or heart damage, and another’s caused brain or neurological damage, their biggest symptoms (and their test results) are going to look very different. My biggest frustration is that the pandemic gave us an opportunity to do better for ALL infectious diseases. This could have been a chance to change the culture - make it the norm to wear a mask during flu season, stay home or mask when you have a cold, improve air filtration in schools and offices, wash hands and cover your nose/mouth when sneezing and coughing - and yet so many people have gotten WORSE since the pandemic. It wasn’t socially acceptable to cough on strangers before 2020, but now some people seem to think it is their RIGHT and essential to their personal freedom! To me, “living with COVID” should mean learning from it by being better about protecting each other from any infectious illnesses, offering more flexibility and accommodations to everyone, updating our air quality standards, and providing compassionate and accessible medical care for all. NOT pretending that it’s gone and refusing to do anything that reminds you of the pandemic (whether it was totally new to you like masks or increased emphasis on normal stuff like hand washing).
Long covid is worse than your autoimmune disorder. Please don't compare us. Be thankful you have what you do rather than long covid.
I have RA & fibromyalgia, too. And like you, am friends with many others with chronic illness and what you wrote is 100% my experience.
Good program, and good for you to share your thoughts. I have had ‘’long COVID’’ for 12 years, that is my statement to the result of autoimmune issues after a bacterial infection preceded by a deep stress. I can not find any difference between long COVID and ME/CFS. It is a steep learning curve with no real help from the medical establishment. Best info I got from support groups, and management training. I am still dealing with it, am still hoping to find a means to trick my mitochondria back in to functioning properly, but it could also never happen. There is a lot not said, about this, there is a lot of guessing, but no real data. Sadly the long COVID might finally trigger deeper investigations and research, for the people who know what long COVID is long before it became a thing. Ps the person who wrote the first reply to your sharing, must have had not heard of this type of autoimmune disorders and is very distressed by having it after having either the ‘’COVID 19’’ infection and or the mRNA, mandated controversial preventive. Ps. Most of my management is through a health gut biome. But that is not a cure as yet.
L.C is adverse vaccine reactions
I don't quite fit onto the spectrum of ME/CFS, but doctors couldn't tell me straight I likely don't have it. For me it (by best guess) was a 'common' virus, but a new 2009 strain of H1N1 swine flu (yep, the latest *newly emerging pandemic* until C19 - not 'just' a resurfacing epidemic like Ebola) which I contracted late in 2013 to a high fever of ~106°F/41°C. It's a late consolation to realize I likely wasn't crazy. I had no incentive to appear partially disabled at just 15 years when I should've just found my way out of adolescence into adulthood. I can vaguely imagine how cruel even more severe symptoms would've been at a time almost no regular physician would talk about it with a straight face (basically "That wasn't part of my studies / PhD."). Likely wouldn't be here to type this rn if I additionally wasn't as cunning and articulate w/o family support or had the 'privilege' of US health insurance while not being rich.
Thank you PBS for giving those of us with Long Covid a platform and a voice.
You. Have. No. Idea. How much I needed this video. I’m in tears. I got sick September 2022 and had long covid since. I had severe vertigo for about four months and developed a vestibular disorder. The fatigue? I now know that it isn’t in my head. I didn’t have anything online to go off of last year.
And - really sorry to hear you are going through this. It is a tough road, but most people do eventually get better. Hope you have some space to rest and recuperate. Good luck!
Everytime i get flu i can breathe and my neighbor lost proper sent of smell after covid
My post-covid recovery took longer than I thought. A neighbor is getting better after months of being severely ill.
Long Covid sounds earily the same as what we (Desert Storm Veterans) went through with Gulf War Syndrome/Illness! Including the parts about getting disability for it.
...I also want to mention KZheadr Physics Girl, who has Long Covid really bad. I really hope she gets better.
Thank you for your service. Yes theres issues with va.
Yep both involve brain inflammation.
also sounds like chronic lyme disease. @@kylen4701
You were forced to get vaccinated for Dessert storm, I wonder if this is the link
I woke up one day in Jan 2021 and I couldn't even get out of bed without being out of breathe. Had to take breaks while showering to catch my breathe. Lasted 3 months, and was mostly recovered by then. Sometimes it comes back and I'm sick for a few weeks to a few months
Excellent video. Definitely shared with friends. I have been suffering since a mild case back in June 2020. Denied long term disability and social security disability. Appealing both but not going to hold my breath.
I am among a very large group of people with long-covid who are denied access to long-covid clinics because we were sick atthe begining of the pandemic when the PCR Lest were very limited. We were also told not to come to doctor or hospital unless we "couldn't breath". I had never been so sick and for so long. Then as I was starting to feel better, I started walking every day just to try and improve recovery. That's when I got worse again. that was the beginning of long-covid. My cognitive impairment (MCI) that is made worse by even mild physical and cognitive activity means I cait work, and can barely care for myself. the long-covid clinics are too overwhelmed to even consider helping patients like me no matter how sick we are. I have finally started the application process for disability. Apparently, I, and all the othas like me, are expendable. Yeah, there areclinics in many places. But, then doesn't mean that there is access to care ! Considering the number of long-haulers and how long and how disabled we are, there is just not enough care and resources toward solving this massive problem. Nice that you mention LC. But, you are not even coming close to capturing the ongoing lack of resources. You encourage is to seek help that doesn't exist for us. We also need more research funding going toward real help.
Long before SARS-CoV2, there were viral outbreaks which left a noticeable percentage of people disabled for a long time or permanently. Outside of the U.S. these conditions tended to be called ME/CFS. In the U.S. doctors belittled, marginalized and ridiculed such patients when asking, "Don't you want to get well?" Like thinking oneself well was the answer and failure to do so demonstrated a failure of the suffering patient. If such people didn't learn to shut up, go away and take up a new hobby like steadily consuming alcohol, cold hearted doctors discarded these patients into the human garbage dump of psychiatry. Out of sight, out of mind, and no one ever needs to listen to a mental patient! A couple years ago when the COVID death rates were stunning the world, I commented that perhaps over 30%* of those who recover will be damaged for a long term or permanently. To me, this was the worst outcome. I was ravaged by another mystery virus years ago before SARS-CoV2 was a thing. I have friends who were similarly damages during outbreaks. *(A researcher had theorized something like 33% of those who survived COVID would be permanently damaged.) Now, the global spotlight of shame is upon doctors and researchers who cruelly ignored suffering people for decades! The origination of SARS-CoV2 is hotly debated. Especially if any level of human error is ever proved as causative for this disaster, SCIENCE OWES THOSE WHO SUFFER!!!!! Doctors and researchers will not weasel away this time! Keep the heat on! We cannot think ourselves well! To demand such is excessively cruel! Work to find the causes and then develop cures! Until that happens, respect those who suffer! I find no fault if a doctor cannot help me so long as s/he acknowledges that I am sick. Science does not have all the answers & that's reality. In the meantime, let us all work together to find solutions!!!
Yeah a doctor told me last year that the pandemic is over so it’s impossible for me to have it😂 yeah right😂
I currently deal with Long-term COVID backlash, and I want to say Thank You to this videos creation. It honestly does feel like a lot of gaslighting by doctors. Heck, even before I had this I was dealing with similar issues of "you're too young to have this issue", thus it got pushed to the side and left as a last ditch attempt to figure things out. I'm 38yrs old now, but have permission to move into a 55+ seniors apartment building because I NEED grab bars and other things in the house now due to all the long-term issues. The fatigue is ridiculous, the aches and pains in the muscle tissue feels like it's almost INSIDE your bones (I wouldn't be surprised if it was), and I can't stand up to even do dishes anymore. It's likely I'll have to start paying for a cleaning lady to get my house chores done once a week/once a month, because I just can't do them. The worst part is that I'm in Vancouver, Canada and the cost of living is through the roof. I can't afford a cleaning lady. So where does that leave me? Edited: And yes, I'm female and on disability benefits. Lives alone.
Just want to say I live in the same area and I deeply understand the struggle. Been living with ME/CFS and fibromyalgia symptoms which have left me housebound for almost a decade now. It is so unjust to have to worry about how to financially survive on top of these debilitating symptoms... especially in a world that wants to "move on" from covid due to capitalist systems, even though the virus is continually infecting people and doing so much harm. We all deserve so much more care, support, and safety. Wishing you more gentleness in your life. You are not alone.
Thank you so much for covering this important topic.
Yep same gaslighting experience with doctors. I validate myself now and am grateful to have a validating supportive community. Very frustrating experience. 4 months in I’m slowly getting better
I hope there can soon be a clear method to test this. Cuz having to depend on doctors to take mental fatigue serious without telling you you're basically lazy is a pain already.
A pain and dangerous
people that didn't take the v doesn't struggle with long covid😂
@@JJs2121 Exactly! I find it difficult to grasp how so many seemingly-intelligent folks fail to see the blatantly obvious AF correlation between the jabs and long covid.
@@JJs2121 I’ve heard from countless individuals that regret getting the jabs, who stopped getting more. And I've talked to hundreds that have had zero, and not even one regrets their decision. In fact, the vast majority agree that not participating in this is one of the best decisions that we’ve ever made in our lives. All that I need to know, right there!
Thanks for the report. There is also a real need for pediatric studies of long Covid. My teenage nephew was diagnosed with mono, flu and even Covid (2nd time) incorrectly. It was long Covid. He missed half the school year. He's still not receiving proper treatment. He's just trying to power through. It's heartbreaking.
Oh no that poor kid! I'm disabled by long covid & my biggest regret is not resting more at first because I'm the community many of us feel like our huge crashes at the beginning lowered our quality of life for the worse permanently. If he's losing speech or ability to walk please insist he rests from me, a now housebound (once healthy & active) fellow long hauler.
@@Andrea-ek6ju Thanks for the advice-I will pass it on to his mom. And sorry that things are tough for you! Stay strong and take care of yourself.
@@Andrea-ek6ju How many jabs have you had so far?
I appreciate this video. I’ve been suffering and I mean suffering for 15 months. It’s so painful to feel like no one is listening to you. All while you suffer endlessly.
Let me guess, you had the CV shots a year and a half ago.
A few family members of mine have long covid symptoms for over a year now as well as lower immune systems getting sick all the time. Unfortunately, I have to say, they have all been jabbed several times.
@@Mary-xc2guall the jabbed I know get sick over and over again. Post office workers, drs surgery short staffed. And now we have another variant 🤣 the same people will jab themselves again 6 times I’m sure
@@niblet112 I wonder sometimes what it's going to take for some to join the dots.
@@Mary-xc2gu they never will. How do you tell someone they have been poisoned and actually queued up to get it??? What would you do in that situation?? I’m just hoping one of the side effects is blissful ignorance.. actually I think it is. That would explain alot
Thanks for making this video.
This is so important, thank you so much! I have had Long Covid/PASC since March 2020, and it has severely affected my health. I am still sick, and even something as simple as walking up and down the stairs makes me exhausted to this day. This video was so validating. Also, huge shout-out to Ed Yong, your coverage of long covid is amazing, thank you so much! It's so hard to wake up every day and have no idea what's causing my debilitating symptoms and have no idea when, or even if, I will feel better. More awareness and research into this condition is so important, I really appreciate this! Thanks, PBS Vitals! ❤🩺🩹
Same, since March 2020.
Same since 2020 april. The first variant seems to be notorious for cousing people suffering ever since .
Did yall take the v or nose test?
@@sffsf81 Neither! Nor testing or vaccine was even a thing when I and thousands of others had developed Long Covid from infection early 2020.
@@KokayMate Thank you for your response. How long did your symptoms last?
I have been suffering from long COVID since 2020. Doctors are trying their best to understand what is going on, but they cannot really support me. All my blood tests and X-rays have been fine. I have many symptoms, such as fatigue, muscle pain, joint pain, dizziness, chest pain, and palpitations. I have reached a point where doctors are telling me that I have too many symptoms, and they cannot do anything about it. I always feel exhausted after doing mental or physical exercises. even though i barely exercise It has been challenging and has led to stress, anxiety, and depression. I don't blame the doctors because it is something new and cannot be treated. It all depends on mental health first, and then just keeping relaxed all the time. The thing is, just relaxing and not thinking about making a change can be a nightmare because years are passing by, and we are stuck in the same place. Even if someone recovers after 10 years, it will be challenging to get back to life, work, or carry on with studies.
Did you take the V or the Nose test?
Long covid is jab injury unless proven otherwise and many jabbed people I know are experiencing these type of symptoms. I'm sorry it's been difficult for you. Look into eliminating the spike protein from your body
@@sffsf81whats in the nose test
Just brushing my teeth when getting ready to go to work can drain me to the point of having to go back to bed!
Thank you so much for reporting on this! Life with long covid is very difficult. The easiest way to describe it is that my body is betraying me, so many problems/symptoms. I feel like I'm a burden and simply existing. I do my best to fake feeling ok and pushing myself to make others comfortable, but I'm exhausted and so tired of feeling like this. Covid: 06.15.22 - 06.25.22 Long covid: 06.26.22 - current (11.16.23)
I feel useless daily 😢
Covid vaccinations bought mine on . Was fine before😢
Sorry to hear that. I have family experiencing the same after their jabs. Don't take any more. Start taking supplements.
Better than being dead with Covid.
Exactly , me too. Thankyou for posting this
I am one of those people who fall in the category-female Hispanic senior with other medical conditions. I have also been denied disability because the doctors who have assessed me have gaslighted me, not believing I still struggle with shortness of breath, fatigue, muscle pain, brain fog and yes, now stress and anxiety. My husband can attest to all these symptoms because he sees them. Every. Single. Day. Other people-my own adult children, relatives, friends, etc pass judgment and not believe what I still go through. How long will it take for our voices to be heard?
If you received jabs, it may not happen.
Open your eyes friend - you are vaccine injured
Same here.
Wishing you a good health
@@johneastwood4852 Likewise. Hang in there 👍🏼
I haven't been vaccinated at all. I have symptoms of long covid. Starting to get taste and smell back, it comes and goes. I don't feel physical or mental fatigue anymore and i work 2 jobs. I would feel hot and then cold like with the flu, thats gone away. I get brain fog from time to time. I didnt have an appetite for days, then moved on to broth now back on solid food. Was out of work for 2 weeks now back at both jobs. I still have that cough. I had joint pain thats gone now. Slowly recovering. I will keep tracking the symptoms.
Amazing video! Thank you for all the great work
thank you so much for covering this. so many people are unaware of the existence of long covid or the risk of covid itself.
PhysicsGirl, on youtube, has long covid. And its such a sad thing to see.
Yes, wishing her all the best.
I was bad like her at one point for my first year . Im still bed and house bound but I have improved. Not much in an 18 month time period I still struggle daily and its frustrating. Im 30 years old and everyone tells me I look healthy and fit
Needles-s.
@@simonruszczak5563 🤤
@@kylechavez7961I'm so sorry for what you're going through but I'm encouraged to know that someone at such a low point can recover to some degree. I've watched all of Diana's videos but all we see is her lying down in the dark. It's a heartbreaking situation for the patients and everyone close to you. 😢
I have symptoms of dropping off suddenly, pains in legs and hands, loss of energy etc.
This makes me want to cry. I’ve had covid more times than I can remember. I have every symptom of long covid. I had one doctor tell me I have long covid. Fatigue, brain fog, constantly getting sick and it takes forever to get over. Every time I get sick my chest gets congested and I need breathing treatments. Never had to do that before. Asthma much worse. I had covid a few weeks ago and during it I started having gallbladder attacks. Currently recovering from gallbladder surgery and having a hard time. Constantly hearing “it didn’t take me this long to feel better”. But the thing is I’m recovering from covid and surgery. It’s horrible. I keep waiting to wake up and feel better. It takes me weeks, sometimes months to get over covid. Add surgery recovery and I’m spent. l firmly believe getting sick triggered my sudden onset of gallbladder attacks.
I appreciate the sincerity of this video. Stay safe out there. Im praying for anyone affected by Covid 19
It's in your head, it's in your gut, it's in your mitochondria. Yes. You are going to have to rebuild everything. This is especially difficult for some people especially seniors. Targeted supplementation will be required on mulifronts. Also, there are supplements that diminish reinfection. Unfortunately there does not seem to be a comprehensive information source for the many areas that need to be addressed.
Thank you
My recovery has moved mountains from where I was. But overall I am disabled from long haulers. I can’t stand or walk properly. Muscle, joint, and nerve pain. I’ve been tested for everything. I’m young and every dr tells me I shouldn’t be having these symptoms. I am now a survivor since June of 2020. I went from barely being able to talk, to now having a semi normal life with the exception of not being able to walk properly and chronic pain. I would take this over the extreme symptoms I experienced in the beginning. Anyone suffering, you are not alone!!!! We hear you!!!! ❤ stay strong
I can't believe I only learned about long Covid just now.
Wow.... I'm shocked that this was allowed to stand. Thank you for telling the unvarnished truth. 👍💯
Thank you !!! I’ve had long covid for almost 4 years. I relate to these patients . I’m completely debilitated by this virus and work hard everyday just to move forward . Good info -
There are no Long Covid clinics near me. Our state decided to shut them down and told us PCPs were best to help us. Meanwhile, our PCPs didn't want to nor had the capacity to research emerging data, so they just tell us to go home and let them know if we die. I would say they care if we end up in the ER, but my doctor just shrugged. Thanks for bringing attention. The more we get, the better chance my next doctor appointment will do more than shrug.
My doctor literally shrugged as well. He told me that there was no point in him even diagnosing me because there was no treatment for long Covid.
@@rubysilver3299 I bet you know this, but in case others don't, there are a few reasons a diagnosis is helpful. First, having a name for what is happening to your body can be reassuring. Second, there are treatments in development. In order to take part in a trial or access what little treatments are now or will eventually be available, patients need a diagnosis. So depriving a patient of an accurate diagnosis can perpetuate harm.
Thank you so much for this piece. As someone who has suffered from ME/CFS (which is thought to perhaps be a form of long Epstein-Barr), I am still taking precautions against Covid, because I know how debilitating these "long" phenomena can be. At this point, I am feeling stigmatized for continuing to mask (written off as someone with anxiety problems, when in fact I am being quite reasonable in my desire to avoid long Covid, under my particular circumstances). It was nice to see the interviewer wearing a mask, in that it helps normalize continuing to wear one as being the right choice for some people.
This all of this. Thank you. Finding work now and having an immune system that is not working well post covid is making a job nearly impossible to keep. There is no aid for us, either. Totally sick of the medical providers-either they have an attitude of, "yeh, but did you die" or "we hate masks" and are not willing to keep me safe at the dr. I am healthier than most, and this is incredibly frustrating. I am not some shrinking violet, I really have to be careful.
Long Covid is like a subscription service for the hospital. Every month you have to go see them, so that they can tell you your fine, but bill you thousands in diagnostic fees dispite having health insurance.
Long Covid has taken everything from me. I've had it for 1 year and 9 months now. I am exhausted.
The Flccc protocol helped me
This is what people with ME /CFS have been dealing with for years it's the worst most debilitating condition and we have been ignored told we r crazy all in our heads
There is so much medical gas-lighting out there anyways. All the way from BMI discrimination to it is all in your head. People are really suffering and dying out here. On the flip side there is a medical provider shortage and they are worn out from the pandemic. They probably are treating what they can treat and ignoring the rest. I don't know what is right. It is really tragic.
Please get well soon Diana Physics Girl. She’s the reason I know about long covid this needs to be talked about more everyone wants to stop talking and thinking about Covid while so many suffer still
Finally!! ME/Chronic Fatigue/Post Viral Fatigue is recognised after time immemorial and countless victims being gaslit and told "it's all in their mind". Suddenly it is being taken seriously, albeit having been rebranded "Long Covid".
There definitely seems to be a commonality among conditions caused by the lingering effects of certain viruses - some broader issue.
@@pbsvitals No, "long covid" isn't ongoing covid Sx. It's as many as 200+ documented additional Sx that are more disabling and persistent. Repeating that it's an ongoing covid-like experience is causing apathy, since people brag how "mild" their covid was. Although "long covid" is a misnomer, the name is important since it's a patient-identified crisis, and a patient-led movement to demand and expect serious and urgent research, treatments, prevention. The able-bodied public owes it their attention and continued respect if they're going to "live with covid", mortgaging their own health and charging it to the disabled.
I also have those symptoms and the Doctor acted like it’s all in my head. I workout anyway even with the way I feel afterwards. I can’t let it steel my life. It does take my energy from me after working also. But I have to work. So I just do it! I also get vertigo everyday and this has been about 1 year and a 1/2 since I was sick. My left ear is constantly plugged and feel’s pressure. I never had these issues before. I have always been very active but I keep trying even if it takes longer because of it. We who deal with this need a miracle. Please let us know what we can do to get rid of it.
I was in NYC for the new year and spent it with my son who lives there. He got Covid and gave it to me. We both were so sick. He recovered nicely ( 22 years old) I have however did not fare so well. 10months of long covid. Headaches on the daily, fatigued, Covid brain, depression and anxiety, muscle pains. That's just some of the symptoms. I'm 57 now and I can't even get a job. Not that I think I can do a job, their Definitely nor going to understand that I need to rest, or my head hurts too much, that I'm going to be sick every month for 2 to 3 weeks at a time.
I contracted Omicron in Jan 2022, at the height of the pandemic. It took me months of conducting my own research to save my life because western trained doctors don’t know and won’t admit it. It comes down to 1) healing leaky gut 2) eliminating systemic inflammation 3) supporting the electrical system through natural electrolytes (beans, peas, fruits) not supplements/Gatorade/etc. For every person, that process is different, but for those struggling like me, it’s more than what any doctor can tell you. Now, as long as I’m very careful about the fuel (food) I put into my body, manage my stress levels, and rest, I have no issues. But if any of those are out of balance, I’m bed bound again.
Thanks for your information
I would like to see someone do a video for those of us who have long covid, to get some kind of help. Their is just too many that say they can help but they want a fee, or once you get into they need way too much info. Most of us with Brain fog, it's so hard to grasp all of it. I try to look but it becomes overwhelming and it too much info that I can't look for long. It's hard to explain what this Brain fog does, because it's unlike anything I can explain. It just makes everything so hard.
My doctor could win an award for gaslighting.
At last it’s being acknowledged and recognised. I’m over 2 years post covid and still can’t even walk across the road unaided
Me too, basic things are now out of the question for me, the fatigue and breathless feeling is horrible then we get treated like we're crazy, wishing you a full quick recovery
@@pamforrester844 you too Pam. I’d like to say things get easier. But I can’t. One day at a time and remember. Less is More and plenty of rest
The role of histamine is interesting and something many are now encountering and that can get very limiting and very serious.
I Wanna Go Back To March 2020 Stay At Home Order Begins!
It's an absolute nightmare. I'm still only a shadow of my former self. I hover around 70/80% of my 2019 energy and fitness. I really don't want advice thanks. I've been through 2 long covid clinics and so much more nothing really helps .
Sorry you are dealing with this. You are not alone!
@@pbsvitals 💖
@@pbsvitals No, "long covid" isn't ongoing covid Sx. It's as many as 200+ documented additional Sx that are more disabling and persistent. Repeating that it's an ongoing covid-like experience is causing apathy, since people brag how "mild" their covid was. Although "long covid" is a misnomer, the name is important since it's a patient-identified crisis, and a patient-led movement to demand and expect serious and urgent research, treatments, prevention. The able-bodied public owes it their attention and continued respect if they're going to "live with covid", mortgaging their own health and charging it to the disabled.
36 y.o. veteran, dying in a nursing home. Severe Dysautonomia, SFN, tissue atrophy, fascia stiffening, etc.
I live in Toronto, Ont. My spouse contracted Covid-19 in Jan. 2020. I dealt with this, as she could not do anything. About a month later, I became infected. And i was down for about a week. Since I have had pneumonia several times in the past, found this sickness strange. I recovered and still had to take care of my partner. This lasted for three months. Once she was on her feet and strong enough and especially been thinking clearly, I went back to work. Years later, we both have had multiple heath issues including fatigue, thick phlegm, and general discomfort. She died a couple years later and I still feel the pain.
My doctor thinks I have it. I’ve experienced five months now of chronic, debilitating fatigue, brain fog, congestion symptoms, and all medical tests are normal aside from the congestion). I crash after busy days or after exercising and some days I feel normal. I’ve been fully vaccinated and kept up with the boosters. It’s very frustrating but I’m glad to hear that the research is continuing.
Ive had ME/CFS since July 2001. Then i had a very bad COVID infection,putting me in ICU for 10 days,and it exacerbated my CFS,now long covid. I really think theyre both a form of post- viral syndrome. I was aC.R.N.A,lived what i did but had to eventually go on disability until SS kicked in.
it started 2 months after-hair falling out-month later-I actually fainted-then had to go to cardiologist -had eco , have adormalities in my heart in test -have to go see cardio. not only that my hands have trigger fingers- brain fog- top of my r-hand felt like I had inflammation & on top of my head burning-both of them getting better-but I am far from over. had covid in Nov-Dec in hospital for 15 days covid/pnemonia . I was 72 now 73.
I am out of the tired stage. Now i am in the anxiety stage. Cannot sleep. Body feels like electricity is going through is. It is awful.
I am just recovering from another crash and have been dealing with post infection sequali for over a year now. Its taken months of work and thousands of dollars from me. Doctors still have no idea what it is or how it affects people. Those that will hear you out want to treat symptoms and not the actual condition. Its so frustrating and debilitating to have your own body revolt against you while those around you can't even fathom how it feels.
My doctor says I had mild covid last December. For 2 or 3 weeks, I had no energy and coughed many times during the day and night. It was the sickest I have ever been in my long life. I had my 5th covid vaccine yesterday and not having a good day. My arm is very sore, I had trouble sleeping last night but slept 2 deep hours this afternoon. I feel like I ran a marathon. Exhausted does not describe it. I am retired so I do not have to leave the house and can rest all I need to. I am hoping this passes before too long.
Big question, very crucial. Did you at any point get the vaccine? There are very few people who did not, so are you one of those rarities who never, ever got a COVID shot. Doesn't seem likely.....In which case how can you know the symptoms you describe were not brought about by the COVID vaccine.
To the contrary, several studies show that COVID vaccination reduced risk of people reporting Long COVID, although it's not clear why. We added links to description.
Because the long covid research is only asking about infection date, not injection date
There are lots of people who have long Covid from getting sick in 2020, long before the vaccines were even developed.
And who funds those studies?@@pbsvitals
A huge chunk of long covid sufferers are from the first wave …. A year before a vaccine was even available
I wouldnt mind this long covid discussion, but there are still no independent studies to see if such symptoms can be caused by the treatment. I only know people who are vaccinated who have these symptoms. Until then I will stay sceptical I'm afraid. There is no open discussion allowed with this which makes the matter only worse. We must explore ALL possibilities!!
I have to agree with you, although I also believe that long covid exists in the unjabbed too. There are some comments on here stating that. Mostly it's the jabbed. Long covid is mainly a jab injury.
Oh wow right wow 😢😢😢
I'm still having breathing difficulties and chest congestion with lots of mucus. Sometimes I feel tired and just want to sleep
The 33 year old guy talking about his frustration with getting disability, I can relate to. I’ve been suffering chronic pain for years and still have to work. No one believes me. Disability won’t pay. Yes, they do expect us to just go homeless, which is one reason we have so many homeless people out there in tents.
Long covid and ME/CFS need attention and treatments
🙋♀️Can long Covid be dormant, and then re-surface if I go out with somebody and they cough can I actually get it thank you‼️
I lost everything fighting Covid yet again. Now that I’m no longer sick I’m sick in the heart. I am so low I’m looking for support groups having to do with surviving chronic illnesses , also background of domestic violence victim suffering violence abuse neglect. I’m traumatized. I feel isolated with my issues.
it took me six weeks to walk to 1 flight of stairs, I still struggle beyond that, the brain fog is very real. I am doing the bare minium just to get through the working day because I'm so fatigued
My sister had a horrible cold back in January which we now think was covid. She has lost a ton of weight and looks anorexic. The doctors have been doing tons of expensive tests. I am pretty sure she has long covid. I never got it so because we are roommates I am able to help her. The brain fog is horrible and I have to remind myself sometimes that she is sick because I have to do so many things for her that are so simple. She too gets episodes of being out of breathe. She is taking supplements, herbs, and eating better which has helped tremendously. Now she is able to go on walks with me which she could not do before. Stay strong. When you get down try listening to music you love. We did not get vaccinated. Nobody in our family did.
Very sorry to hear about your sister. I do hope she keeps improving and yes supplements are important.
thats interesting, i thought that long covid was directly related to getting the jabs, whether it was the original 2, or the boosters. my brother only got initial 2, i got 2 and 1 booster and he is having multiple issues. i feel you on having to remind myself that he is sick and not well, and that hes not being lazy and asking me to do things but sometimes its hard... especially 8 months on@@bluewaters3100
Welcome to what those of us with ME/CFS have been putting up with for decades.
I got Covid in December and have weird symptoms now. I’m a lifeguard and teach swimming. Is my career over now? I can hardly walk through the grocery store without thinking in going to pass out. 😢
Look into pots/dysautonomia
Thanks for this. I had COVID twice and now suffer from long COVID. I was a vibrant educator seeking my pHD. I just resigned from my teaching job it was just too much. Everyone turned on me like ..treating me like I'm faking. Trying to figure out what to do now
Autoimmune disease sunlight helps a lot. Also pots fluid therapy and exercise
sorry to hear such trot, PBS do your homework!
What's the difference between long COVID and vaccine related injuries?
I have what I call "long vaccine" since I was permanently (it seems - three years later...) injured by the vaccine - hearing loss and tinnitus (like Dr. Greg Poland of the Mayo Clinic and many others). Finally, there is a study being conducted by researchers at Yale called LISTEN. It includes people with BOTH long covid and long vaccine. Google it for more information.
The symptoms are very similar to ME/CFS which is often triggered by a viral disease. We have been treated by the medical community and social community skeptically for decades despite the fact that the CDC defined the symptoms for diagnosis. We still have no treatment. We look well , but often have periods of being completely debilitated and bed bound. So it is hard for people to believe that we are disabled. It may be beneficial to diagnosis this as ME/CFS as Covid has a lot of baggage with it.
There are treatments and interventions . Look for them. Many , very simple ones.
I get out breath keep forgetting things lost my sence of smell and fill lazy dizzy I have a sleep app machine but no I seen this I’m worrid I have it
It should have never happened; the public should not have had to deal with thhs horror; those responsible must be brought to trial for this extreme crime against humanity.
Ty so much. And I had Covid twice. The first time I had colds that were worse and the second time wasn’t that bad either. Just had a little bit of a cough. Then went away and then a month later I noticed I was getting out of breath and that’s not me. I’m very energetic and I was wheezing so the doctor said to go to the hospital and they told me I have post Covid bronchial asthma. And I have a heartburn and Gerd from it as well. And I’m just really scared that it’s not gonna go away. From what I read and what doctors tell me that it usually does go away but there’s no guarantee. I am 51 and I already have lupus since I was 16 and thank God. I’ve been blessed, and then I start looking into stuff and I’m like oh maybe I have that Hashimoto’s thing because I have hypothyroid too and I never weighed more than 110 pounds only when I was pregnant I went up to 126 that was, it was both kids. And then within a year I gained 40 pounds. I was actually trying to Gaten wait times in my life. I also have a lipoma a fatty tumor right above my belly button so I’m going to a surgeon to get that removed. I just don’t want to have this we using it and being out of breath. And I’m very scared because they say with heartburn which I never had only when I was pregnant and I get it every day now and it’s horrible. And I’m scared to get esophagus cancer etc. And I don’t know if this is related, but I was getting really itchy rash on my arms. In the morning they were raised blisters with liquid in them. So I went to the dermatologist and he said that I have histamine intolerance. So he said to take A Zyrtec or whatever allergy medicine because their antihistamine. I guess he was right because I did it for like two weeks and run away. I mean it’ll probably come back. I don’t know what that Hass to do with it but I just feel like everything is kind of connected and tying into something and it scares me . And what he did was he scratched my back and then he checked it and it was raised and that’s how he knew. But when I left his office, I was scratching everywhere and my skin where I scratched didn’t raise but I kept checking it. But I’m sure you know what he’s doing. I just don’t know why all of this is happening to me and I don’t. Nobody has an answer but I’m very scared. I didn’t want to get the Covid shot. I put it off for as long as I could and then as soon as I get it I get Covid I mean it was probably equations I don’t even know. But thank you for your information.
I'm one of the people who suffers from long haul COVID... my Dr ignoring my complaints is difficult for me to Walk and before this happens to me in 2021 I was very active going to the gym four times a week now is astragal just to stan up some days worse than others and in between other problems where we can find some help?😢😢😢 Foggy head blurry vision ,ear infections 😮 ???
Really sorry to hear you're going through this. Hang in there.
Did cryoglobuline occur after SARS COV2 infection ?
I have had Long COVID for over 3 years. Doctor is dismissing it. I am so frustrated, and continue to cycle through symptoms.
Thank you for bringing this up, now pls. do not omit people like me again. People who got these very symptoms immediately after the vaccination. It is hard enough without being ignored by media, doctors and loved ones as well. I've had almost 3 years of hitting the wall of complete silence and distrust everywhere.
Event 201
This is what you get with a "For profit" health care system. Profits come before healing people.
Same thing with long haul Lyme disease.
Why not ask bill bates and faizer