This Disease Turned 5 Million People Into Statues, And Then Vanished
Use code JOESCOTT50 to get 50% OFF your first Factor box plus 20% off your next box at bit.ly/4ajfhEs
A mysterious disease swept the world in the early 1920s that put people into catatonic states; stiff and immovable like human statues. It was called encephalitis lethargica and it affected over 5 million people worldwide, and then was almost forgotten.
Want to support the channel? Here's how:
Patreon: / answerswithjoe
Channel Memberships: / @joescott
T-Shirts & Merch: www.answerswithjoe.com/store
Check out my 2nd channel, Joe Scott TMI:
/ @joescott-tmi
And my podcast channel, Conversations With Joe:
/ @conversationswithjoe
You can listen to my podcast, Conversations With Joe on Spotify, Apple Podcasts, Google Podcasts, or wherever you get your podcasts.
Spotify 👉 spoti.fi/37iPGzF
Apple Podcasts 👉 apple.co/3j94kfq
Google Podcasts 👉 bit.ly/3qZCo1V
Interested in getting a Tesla or going solar? Use my referral link and get discounts and perks:
ts.la/joe74700
Follow me at all my places!
Instagram: / answerswithjoe
TikTok: / answerswithjoe
Facebook: / answerswithjoe
Twitter: / answerswithjoe
LINKS LINKS LINKS
abcnews.go.com/Health/percent....
wfneurology.org/activities/ne...
academic.oup.com/jnen/article...
achh.army.mil/history/book-ww...
academic.oup.com/jnen/article...
www.ninds.nih.gov/health-info...
www.neurologylive.com/view/en...
www.encephalitis.info/types-o...
academic.oup.com/jnen/article...
academic.oup.com/jnen/article...
www.npr.org/transcripts/43628...
protomag.com/medical-history/...
achh.army.mil/history/book-ww...
academic.oup.com/brain/articl...
protomag.com/medical-history/...
bmcinfectdis.biomedcentral.co...
academic.oup.com/brain/articl...
www.thelancet.com/journals/ec...
www.psychologytoday.com/us/bl...
wfneurology.org/activities/ne...
TIMESTAMPS
0:00 - Intro
2:40 - What Is Encephalitis Lethargica?
6:36 - Parkinsonism
8:07 - Dr. Oliver Sacks
11:59: What Causes E.L?
18:07 - Sponsor - Factor
It is always disturbing when science cannot establish any answers to a disease that is still around.
That is probably the only bright spot in the Long Covid problem today: *lots* of interest in finding out exactly what is happening and what to do about it. The condition is increasingly known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It has appeared as chronic Lyme disease, as chronic Epstein-Barr, fibromyalgia, and now as Long Covid. CDC notes, "An estimated 836,000 to 2.5 million Americans suffer from ME/CFS. About 90 percent of people with ME/CFS have not been diagnosed." AFAIK there is no effective treatment yet, only techniques to keep it as low key as possible. An interesting anomaly among Long Covid sufferers: serious athletes (particularly half marathoners and marathoners) seem over-represented. Don't give up; the National Institutes of Health is sponsoring a lot of ongoing research in major medical centers and universities. It can't stay a mystery forever.
Makes you question disease pathways
like 100s of diseases and conditions from the vax lol
Science is a methodology, and it has very limited options when there isn't enough data. The only way to gather more data is with lots of funding, and to really get to the bottom of things, ethics would need to be violated (dissections and high risk interventions on people who aren't dead). So unfortunately it's not a mystery that there are still medical mysteries and for the most part, that's for the best.
like everything that came from the vax! what a mystery!
I developed Chronic Fatigue Syndrome in the early 90s after a significant illness. The doctors told me that was what I had was called but also told 'no one really thinks that's real illness' and I would just have to 'take it easy and see what happened'. I have experienced many bouts of Catatonia since I was 14. Took me a few decades of worsening health and being near to death to better understand the underlying causes for my ongoing illness. It is so strange to hear of so many experiencing something similar after covid. It is very hard to see that the medical system still struggling to help people.
So what were the causes of your illness? I also have chronic fatigue syndrome and doctors in my country weren't able to help me. I gave up and I'm just trying to live with it but it's very difficult.
I hear you. I’m 24 years and counting in chronic fatigue and got hit with Covid in 21 which nearly killed me. Long Covid is still hanging on. And the medical doesn’t believe in it or doesn’t know anything about it. The only treatment offered was antidepressants. And it is diagnosed with a blood test:Epstein-Barr virus. Strange to say the least that no other treatment is known.
@@erikkollar66 Mine was from Epstein-Barr virus following a bad case of mono. Blood tests from Mayo confirmed this.
Fibromyalgia with or with CFS is recognised by the American Arthritis Association. I had been dismissed by so many drs in the 1990s. One told me he had sick patients to attend and that I should be ashamed of myself.
@@cocohodge2962 I'm sorry you were treated that way. He had no right to make those assumptions but they do unfortunately. I understand. I've had ME for over 40 years. :(
I am 29, just diagnosed with Parkinson’s*. I started carbidopa-levodopa in December. I am so thankful for the neurologists that have helped me, I was in a wheelchair for 3y and have just started walking with crutches again. I was bed bound and now I’m back to playing music and “being a person”. There’s no words for how absolutely life changing the right medication has been. While my symptoms are permanent they’re at least not progressing as severely and I am so so thankful. *datScan may distinguish EOPD vs. PS vs. VE(L) just in case, I do it next week. Humourously my neuro told me to watch Awakenings because the case was so similar. Everything Sacks said was true of me… and now I’m doing everything I did in high school it’s wild.
I hope it’s not insensitive to talk or comment about but I got real shakey hands (26) my uncle and aunt both died with it, my dads getting older and he shakes non stop at times and has seemed to mentally degrade more so than with what his age should allot for. He hasn’t been diagnosed but it’s just kind of assumed within the family it’s the same as his siblings. I had no idea that it could set in so early? If you don’t mind my asking what symptoms did you experience at the start that eventually convinced you to go get it diagnosed. Sorry it’s out of self interest but genuine curiosity with a hint of low key panic. Best wishes to you on the journey!❤ - to preface I’m writing this during the intro playing so maybe that gets answered in the vid lol
My grandmother has Parkinson’s, and my mother is an activist for all sorts of medical stuff and she is currently trying to help researchers find a cure and/or to treat it better. AND I have ONE question. Did any of you work or be near harmful chemicals? or did you be near pesticides? As my mother has a lead that could lead to a cure quite quickly if it is chemicals.
May God Bless all of you and bring you comfort. ✨🌷
Wishing you well mate.
When he said Lenard I immediately thought of that movie. It's my favorite Robin Williams movie😊
I'm flabbergasted by your information. I'm a retired RN after 30 years in ICU, ER, and psychiatric care. You speak like you have a larger understanding of medicine. Do you have a medical degree? If you don't, you have a wonderful talent for research. Thank you for this information. You have a great speaking voice and easy to listen to.
Have you read any of the books by Anthony William? He explained why and how viruses affect the central nervous system years ago. I used his books to heal a chronic cough, severe asthma, and 24/7 allergy symptoms (that made life intolerable) that I got post Covid.
I know it's shocking, but people without formal education can be VERY fluent in lots of subjects.
> turns 5 million people into statues > refuses to elaborate > leaves
The CIA never explains itself.
He elaborated. Did you miss that part?
en.wikipedia.org/wiki/Encephalitis_lethargica#:~:text=The%20disease%20attacks%20the%20brain,lethargica%20spread%20around%20the%20world.
@@DaleDix i hate to b that guy, because I’ll always enjoy a good CIA dig, but they wete formed in 1947:/long after this first appeared
@@hollister2320that's exactly what they WANT you to believe.
My great great grandfather died of this in 1921. It was thought that he contracted a virus from mosquitos that caused sleeping sickness.
My great grandfather too, but I think he got it from a STD 😉
@@janick01ifyIt’s Lyme and you don’t get that from mosquitoes.
Mosquitoes don’t transmit sleeping sickness , that’s tsetse flies and unless he had been to Africa it’s unlikely he had that. The fact is no one really knows what caused Encephalitis lethargica.
I don't like mosquitos, they are satanic.
@@tatata1543 probably something to do with the influenza pandemic due to the timing of both epidemics. Either having influenza first made people more susceptible to encephalitis lethargica or is a rare symptom of influenza. But as you said no one really knows.
I was a nurse's aid in the 1980's and one of the patients was similar to that, caught in a rigid posture, but he was conscious. He was quite a character with a colorful history from before getting sick and he would joke about never having expected to become a human pretzel.
He could still talk? And interact with you guys?
@@weareallbornmad410 yes. He was conscious. There were several patients in my experience who were physically rigid in one posture but who were conscious. We nurse's aids were not shown the precise diagnosis but were told only the treatment plans that we were part of, mainly physical assistance etc. Sometimes the RN's would explain something as cancer but meaning brain tumor. One woman was described as being this way because of "depression" and she was a survivor of Treblinka. (She was not Jewish. She was Polish Catholic.) We were told she was "unresponsive" but I was one of those people who didn't always get the memo lol. She had very limited interaction and we had to feed her which was not easy because she was bent over. I actually got her to feed herself with me just hold her hand around the spoon by doing what I always did: I always found a way to make eye contact and talk a little bit. I left that line of work because of the horrors of how people are treated. I was reprimanded for doing that because it was not in the instructions. This happened after a doctor reprimanded the facility for their lack of interaction. He had been called for a man who was also semi-comatose and some idiot thought he was dying. This man was very tall and required two aids to turn. We were shorthanded that night and so, while the doctor stood there I apologized for having to do it "my way" and I went down to the foot of the bed, stopped down to where I could make eye contact, tapped on his toes and called to him until he opened his eyes and saw me. Then I made turning gesture with my hands and loudly said "turn over". He grunted and reached for the bedrail and I was able to turn him. The doctor was furious. His nurses' reports had consistently told him the man never interacted. He asked me about this and I told him the truth: we nurse's aids always interacted this way but we weren't supposed to. I was reprimanded after that for "not following orders" and I went to work at another nursing home, one that was more "upscale". The nurse's aids there followed orders and during my first week orientation I witnessed such abuse that I wanted no part of it. I was reprimanded again and left immediately, never to seek that kind of work again.
@@weareallbornmad410 well there is also another disease where you do actually become a staute, so what happens if I remember correctly if the patient gets bruised (say a papercut or a scrape) it gets replaced with bone or whatever the bone is made up of, so unlike the disease in the video, these people could actually "do" things albeit like they were a porcelain doll, because if they just had just one minor little cut here or there, would add up, so at some point in their life, they would have to chose how and in what position they would want to stay in for the rest of their life.
AWAKENINGS is one of my favorite books ever. Tons of footnotes, which explain alot! Some pages are 1/2 footnotes. Dr. Sacks' compassion and care for his patients pours through every page. Book is 1000% better than movie which was sweet and cute. But encephalitis lethargica is utterly fascinating, including precognition of death in a couple of patients! Fascinating.❤
I agree - indeed, ALL of Dr Sack's books are fascinating. He was a highly intelligent, erudite, well-read and compassionate man with an insatiable thirst for knowledge and experience. He was a genuine polymath, with extensive in-depth knowledge in many different scientific fields, as well in science history, psychology and philosophy, art and music. He was one of the most inspiring people I never had the pleasure to meet. Once it was certain that he would not survive his cancer, he faced his impending death courageously and wrote about it candidly. I was deeply saddened when I learnt of his death.
Yes, the movie is great! The book is fantastic.
Yep, I thought of Robin Williams and DeNiro as he first started describing the situation Gr8 Movie/story. Love❤
I love all his books too. Awakenings is a wonderful movie. Both book and movie heartbreaking.
@@Carolyn-qd8mj Yes - heartbreaking.
My mom had long covid. She now, can’t walk without a walker, she has a shake to her hands and head and loss of balance. The neurologist said the virus attacked the little hairs in your ear that helps you balance. I feel bad that her last years of life were made worse. Everyone gets old, but she went from an active elderly person, to hospitalized, the in a rehab center and now home and I take care of her.
I'm so sorry to hear that. Love her while you have her- I lost my grandma recently and she went from independent, living on her own, still driving etc to bed ridden and then gone in about a week.
@@Blinkerd00d thank you and I’m so sorry about your grandmother. My mom went from working at the free clinic (retired RN), going to craft classes, singing in the choir and driving her red mustang around town to me taking care of her. Everyone knew her and her car. She was fun. She says it’s so hard to loose your freedom. I do as much as I can but I have 3 kids from 8 to 13 years old. They deserve a childhood with their mom too. It’s hard to balance it all and somedays, I feel I’m failing all of them. I remind myself I’m one person but it’s tough.
Meanwhile, donald trump and right wingers were running about the place as if it was no big deal/all fake and made up
Yeah, took some similar, but thankfully milder damage to the balance section of my cochlea. Worse damage to my mitral valve, which is degrading from moderate regurgitation to severe, with some increasing symptoms. Still keeping as active as possible, it just takes a bit longer to walk that 2 1/2 miles to and from the supermarket at times. Cared for my father in his final years, damage from diabetes causing vascular dementia, turning him from a gregarious, active elder into a withdrawn and eventually helpless shell of his former self. The worst and long dreaded thing, getting asked where Mom was - she had died over a decade previous, the month after their 50th anniversary. I knew it was coming, didn't make it any easier. For him, it was like losing her all over again, with far less self-control. It's not tough, it's double tough, but it's also appreciated, as the elder can no longer do many things for themselves.
I'm really sorry to hear that, my wife has the same symptoms in addition to being bedbound most of the time and she's just 35 years old, there's a possibility she will live decades like this. I'm taking care of her but that really just means money and cleaning, we are unable to have a romantic life really (going on dates, casual hanging out just to enjoy time, travel) . Life's a B.
Oliver Sacks was such a brilliant neurologist and writer. Probably most people watching this channel already know of him, but if you don’t, I’d recommend starting with the book “The Man who Mistook his Wife for a Hat”. It’s a fascinating and moving piece of work.
And Robin Williams in "Awakenings".
Excellent book, very much worth reading.
Dr. Sacks is an inspiration for so many future neurologists (and I’m sure writers as well!). Nowhere else is the inspiring humanness of a “patient” and their life experiences described as wonderfully as that book. As a med student, his writing always serves as a personal reminder whenever taking medical history and seeing to anyone with an ailment.
One of my favorite books ever. Highly recommend.
He also theorized that people experiencing spiritual rapture were having petit mal seizures due to the same brain area firing neurons.
My Mom got her nursing degree in 1963, she did her medicine and psychiatry practice with a catatonic patient. She took him put of this catatonic state I don't know how she did it. Mom you're special for me forever and I love you Rest in Power ❤❤❤
Your rest in power message for your Mom truly touched my heart. It is exemplary for describing my Mom as well. Thank you! ❤
Much respect for your mom
She probably touched him with her loving light filled hands. I was a nurse. Patients asked me to touch them. Healing hands can do wonders. Light to your mother and her loving.
@@sweettaterpie7009the original commenter had enough errors to the point where I only *think💜* I know what they’re trying to say but I’ll piggy back and high five YOU! Nurses rock. You all are the best. Time after time- watching generations of folks in my family and with my own experiences. Why is a nurse hug or hand squeeze 1048484993 times better than one from almost everyone else??? I don’t feel like trying articulating this at 3:30 AM but it’s the truth 😊❤😊
Your response is nonsensical..............
I experienced "long COVID" for nearly 6 months. Mental fog, physical fatigue and difficulty doing daily tasks. It was like I slowed down to 20% my normal speed, tasks would take about 5 times longer than usual. Oddly, though, I was perfectly OK with this, like it didn't matter. I was aware of it, but it didn't bother me, worry me or upset me. It went away gradually, until one day I just realized, "hey, I feel normal again!" But there is one lingering side effect - I am easily at peace with things that previously would've caused distress. I am able to accept things more easily just as they are and simply move on with my life in a positive way in spite of negative circumstance. It's not apathy or indifference - it's not like things don't matter, just that I'm at peace with whatever comes. It almost feels like I've moved on to a new spiritual level. It's difficult to explain, but I see it as a plus and I hope that it continues.
I had a similar experience.
Man ive had long covid as a 16 year old for the past 6 months and have had all those exact same problems its nice to know im not the only one
I nearly died from covid. 89 out of 93 symptoms, yep, including neuromuscular problems, falls, sleeping, etc. Hard to come back from. I feel about 80%, not 100, but I'll take that 80% gladly. I saw a lot of my peeps die from it. Gives a person a whole new perspective. I also don't worry anymore, especially with prayer and Jesus by my side 24/7. I still have long covid. Pesky little booger, ain't it?😢 but 😄😄😄😄👍🙏✝️❤️
Johnson and Johnson or Moderna?
@@SmogginMogor Pfizer ?
That the patients improved with l-dopa, but eventually regressed, reminds me of "Flowers for Algernon".
I remember reading that in middle school, very sad story.
Yes
That story _still_ makes me incredibly sad, decades after I first read it.
Beat me to it. First read that book in HS
Incredible book!
Another reason to be thankful for the vigorously healthy body I have had for 71 years.
Did you just say the n word?
@@peeledbananas9840what?
celebrate! I recovered from CFS and have to take it easy at 54 yo and I am thankful to never have had pain, like fibromyalgia or arthritis or back pain. Celebrating with you!
@@peeledbananas9840, yeah, what?
I don't normally comment on stuff like this, and I don't know if anyone will see it, but my Grandma's mother passed away when my Grandma was 3 years old in 1921. All she was told her entire life was that her mother had the sleeping disease and died from it. No one explained what it was or what it did, and because of her age she didn't even remember her mother much. In fact, her dad's mother raised her and her sister, which her sister was 10 years older, but she wouldn't tell Grandma anything other than it was the sleeping disease. I imagine the adults back then did not talk about stuff like that with their children. I don't know if it's the same thing, but it is around the same timeline. Now, my Great Grandma was from Germany and her family came over before WW1, but she had family that did live in New York. And the one thing that my Grandma did remember was that when her mom passed away, her mom's sister and mother came to visit, and her Grandmother only spoke German, and Grandma couldn't understand her. This was the only time that my Grandma met her mom's sister and mother. Also, there is a picture of her mother with her older sister, who at that time was between 2 to 3 years old, and she looks fine and even slightly smiling. So, no one in the family knows when the sleeping disease started, or at least my Grandma and her sister were never told. But as far as we know, no one else in the family has ever had it. So, I don't know if it's the same thing or not. But it would explain why her dad and his mother called it the sleeping disease and why her mother passed away in 1921.
As you were describing their symptoms, I went, "that's got to be something to do with dysfunctional dopamine production/use in the body." Reminded me so clearly of how I felt when my fibromyalgia had me bedridden--barely able to stay awake, struggling to move, struggling to feel, struggling to think, bleak and losing myself. Now I'm healing; and many signs point to my fibro being rooted in dopamine issues. Most compelling might be in how the Adderall I was prescribed for ADHD has had completely unexpected, powerful effects on the fibro pain and fatigue! There are so many mysteries surrounding the human body and nervous system to this day. Here's hoping we can unravel those mysteries further and bring life to people suffering.
I have fibro and it's carved my life down to the absolute bare minimum - at 40 I'm currently unable to look after myself so I'm having to stay at my mum's as I recover from a cold I had in January - and I've been struggling through the start of an adhd diagnosis. It'll be around a 3 year wait with the NHS but it sounds like it might well be worth it. Can you point me to any research on this? I'll try some googling but the brain fog is thick at the moment. I'm glad you're healing!
@@christyharrington-brown4519 As a fibromyalgia sufferer myself, I wish you luck!
Raising a hand here to second the need for where you got your information. My husband suffers from severe fibro, and its cut his life to almost nil. If there's something we could show to his doc that might help and give us a different direction than the current ineffective treament, GODS, please? Response? Anything??
@@zenfrodo from PubMed "Fibromylagia, chronic fatigue, and adult attention deficit hyperactivity disorder in the adult: a case study" Abstract Adult attention deficit hyperactivity disorder (ADHD) may share common features with fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS). In an outpatient psychiatric clinic, a number of adult patients who presented primarily with symptoms of ADHD, predominately inattentive type, also reported unexplained fatigue, widespread musculoskeletal pain or a pre-existing diagnosis of CFS or FMS. As expected, ADHD pharmacotherapy usually attenuated the core ADHD symptoms of inattention, distractibility, hyperactivity, and impulsivity. Less expected was the observation that some patients also reported amelioration of pain and fatigue symptoms. The utility of ADHD medications in FMS and CFS states may be their innate arousal and enhanced filtering properties. This model supposes that FMS and CFS are central processing problems rather than peripheral disorders of muscles and joints.
@@christyharrington-brown4519 "Fibromylagia, chronic fatigue, and adult attention deficit hyperactivity disorder in the adult: a case study" and "Fibromyalgia patients show an abnormal dopamine response to pain" from PubMed seem like good places to start
My Mom had Sleeping Sickness as a child. She was living in Roslyn Washington. Her Dad worked at the coal mine and it was a company town. If you worked at the mine you could live in the town. She came down with Sleeping Sickness and also a super high fever that cooked her brain. My understanding is she was sick with 2 or 3 things at the same time. Kind of hard to say since they really didn't have a good way to test for things back then. My best guess is someone came to work at the mine from the East Coast and carried the sickness with him. She was in a coma for several weeks and when she did wake up, she had to start school over. She was a couple of grades ahead when she became ill. It was a hard road to recovery, but she ended up living a full life. Since she was one of the few that had it on the West Coast and recovered, she would be called in to donate blood to help other victims many years later. I'm so glad she didn't end up the way these people did. She recovered and they never did. Maybe because she was a child.
I too, 1950's 60's cusp... Polio, Scarlet Fever and possible Sleeping Sickness, heard it mentioned. Hush Hush it was... Couldn't move except turn my head. Then remember nothing, 9 weeks later became conscious as if nothing occurred. Tried to get out of bed and splat like a pancake on the floor. 10 weeks out of school and tried to hold me back... Today over 70 and like a Timex, keep on ticking, likely windup model... mustn't forget to wind it.😎 The pain, what I call Polio Pain... I recalled when stricken with the magic elixir 19... just as crippling.🤔
@@supremepizza3710 my mom wasn't able to walk when she came out of her coma. This was back around 1920. Her legs were starting to pull up and the doctor wanted to cut the tendons so her legs could be straightened. Her mother wouldn't let him and instead was able to get Some olive oil, and started rubbing her legs with it every day. It was in the bible so she figured it might work, and it did! I think it was physical therapy not the oil. Back then they didn't do physical therapy. Anyway she was able to walk again, and have 5 kids. Another thing the doctor said she couldn't do. I'm glad you made you made it and are still around. She died from lung cancer when she was in her late 70's.
"Since she was one of the few that _had it_ on the West Coast and _recovered_ , she would be called in to _donate blood to help other victims_ many years later." Seems we forgot this during the most recent 'demic.
@@SZG65There we’re specific blood drives for people who’d had Covid.
@@zorakjOh? But the mainstream media played off natural immunity as if it were taboo. All part of the plan, as China and other countries lied about the number of cases to justify deployment of the real bio weapon of mRNA, then they didn't take the mRNA themselves. Go figure.
All I can think about after you said Strep is how today strep is being studied for causing so many neurological and psychiatric conditions including seizures, PANS/PANDAS, catatonia, POTS, scarlet fever obviously, rage and/or extreme behavioral and emotional changes, Tourette’s like ticking, and the list goes on.
I highly doubt strep would cause all that. Next they'll say it's caused by something else, they did it before. Doctors really don't know crap.
I doubt strep would cause all that, next they'll say it's something else, they said it before.
I had a lot of strep growing up. I had scarlet fever from it while in grade school. Then at the end of junior high school, I had several strep infections and then mononucleosis at the same time. I ended up with encephalitis and meningitis as a result. I’ve never fully recovered. I now have several neurological conditions due to the neurological damage (dysautonomia), including POTS. While the mononucleosis is blamed for the encephalitis, as it is a rare complication, some of the specialists have considered the amount of strep that I had as significant in what happened.
Tourette’s like symptoms? …can it straight up cause Tourette’s syndrome?
I’ve had a few really bad cases of strep over the years and I’m so grateful that I recovered fully
My paternal grandmother had Addison's disease in the 1950's. It was so bad, they had to sell the farm and move to the city for her treatments. She lacked the energy to get out of bed. It got to the point that she wasn't eating. I don't know what treatment they gave her, but she was super-woman to me! She cooked, cleaned, and worked 40 hrs a week. Every weekend had the grandkids, baked bread, went to church and Sunday and dinners! I have been diagnosed with chronic fatigue. I WISH I had her treatment plan!!!
Great video. I've developed POTS as a post-covid condition, and while I'm mostly functional thanks to medication, the feeling of going from fairly healthy to unable to climb a hill was horrible. Thank you for the awareness on long- and post-viral conditions. I hope a good thing from COVID is more awareness & research about these things.
That's also a very common side effect of the injections we were given during Covid. Hopefully it improves for you! 🙏🏿
I developed it as a preteen before COVID even existed. It freakin sucks. I feel as if I lost our on what we're supposed to be my carefree teen years due to it. 😭
I'm still looking for answers, but I have similar symptoms.
What is POTS?
@@Wolfie54545 Postural orthostatic tachycardia syndrome. Essentially, all the stuff your nervous system automatically balances is out of whack. breathing, blood pressure, heart rate, digestion, etc. It's a type of dysautonomia, with the autonomic nervous system being the one that automatically adjust those things
Speaking ot long covid and CFS, a wave to Physics Girl: get well soon, Dianna!
I miss Dianna. She was the first person I thought about. I miss her energy. Get well soon, Physics Girl.
She and Long COVID popped into my mind, as well. 😞
@jesusisunstoppable4438 Reality disagrees. The fart cloud in your skull isn't up to the task of distinguishing between fact and conspiracy theories, please take a seat and stay there.
@@jesusisunstoppable4438awesome, I'll let my father in law know that he can stop pretending to have lost his sense of smell.
@@jesusisunstoppable4438Actually, there’s no such thing as Jesus.
In the fall of 1959 I spent more and more of my day asleep, until one day I started sleeping 24 hours a day. I then spent the next 10 days in an EL coma with a fever. On the 10th day I woke up, totally fine and coherent. My MD had a spinal tap performed and said he suspected mosquito borne virus.
what was life like back then? sometimes i wish i experienced more no-internet times
@@alexiiconner I was from '63. Libraries and the dewy decimal system were the thing if you needed information on anything. Phone numbers were still like Xenith 4245 instead of like they are now. And every house phone on the street went up or down sequentially, so everybody knew everybody's number. Also, party lines were still a thing. If you were in school and had to call your parents, you'd better have a good reason or else the secretary wouldn't let you. If you were expecting an important call and had to leave, better make sure people know where you're going so they could try getting hold of you there. Drive-in movies were fun. In movie theaters, they had songs that everyone would sing following the bouncing ball. Summers were like baloney sandwiches and riding your bike with friends all day until the streetlights came on. Polio and small pocks were still things to worry about. Duck and cover drills in case the Russians attacked us. Having a church key in the drawer was mandatory because not all canned beverages were pull tabbed and twist top bottles didn't exist yet. Hope this helped some.
@@ericf7063thank you for sharing, a pleasure to read
I was born in 1959
@@alexiiconnerwe had to know what we were doing to screw it up this bad.
My uncle got this as a child. He was "frozen" periodically. He was somewhat disabled when awake, he could walk and run with an odd gait. He was certified by doctors but my grandparents kept him at home. He could be prone to tantrums mainly from frustrations with his limitations. Physically he was very strong as a young man and could easily just swat someone away to the other side of the room. He survived until his late forties, passing away around 1958. As a side note, my father, the younger of the two contracted rheumatic fever as a child.
As someone who was diagnosed with Autoimmune Autonomic Ganglionopathy in 2016, I have never accidentally come across a video that brings up the connection between catching viruses and developing dysautonomia (like Long Covid). Thank you for bringing more light onto the subject, it's sorely needed.
I related so much to this. I've been more or less bedridden for 12yrs. I just turned 40 & havnt had a life since 27. Not only do I suffer from debilitating physical fatigue, but also mental fatigue. My exhaustion prevents me from being able to even type comments like this (sometimes I'm able to push thru, but it takes so much out of me, I usually can't finish & have extreme difficulty putting words 2 thoughts.) In my opinion, this is the worst illness a person could experience. Others cannot relate in the slightest & assume it's just laziness, even Drs! When my body/mind has allowed, I've researched my symptoms over the yrs. I used to think it had to be Chronic Fatigue Syndrome. I haven't ruled that out, but a yr or so ago I learned of a condition called Chronic inflammatory response syndrome. Based off of so many similarities (published in research studies) I'm convinced these illnesses could very well be one in the same. There are actual biomarker tests to diagnose CIRS, but the vast majority of the medical community has no knowledge of the condition & (from my experience) refuse to look into it (despite there being published studies spanning back to the early 90s). There's also a treatment protocol by Dr Shoemaker(the person who actually figured out what was going on down to the proteomic level. (I.e. the production of certain proteins). I'm very much aware of everything going on around me, yet my body doesn't allow me to function. It's so depressing, it's beyond explanation. I WANT nothing more than to be able to get up and live normally, but I'm unable to even do my own grocery shopping or play with my child. Heck, I barely can make it to the bathroom! I can't get disability since no Drs care to help. There are a FEW Drs in the USA knowledgeable of CIRS & certified 2 manage it, but they're practically all integrative medicine Drs (who spend time with patients, making it financially unfeasible for them to accept health insurance, since it's based on quantity over quality!) And as said, I have NO income, & can't even buy essentials, much less pay a Dr. I spent so many yrs continuing to hold onto hope. But ive gradually gotten worse & worse. Currently I'm unable to even stand without feeling like I'm gonna black out & my body is forced to lay down all the time! I've missed recent Dr appts n dnt kno how I'm gna manage actually making it to a Dr. This is absolute hell! Thx 4 bringing awareness that this type of suffering is still being experienced.
I'm so sorry! I don't have CIRS but I can relate to almost everything you've shared. The only reason I'm alive today is because I got Disability, but getting approved took 19 years. (to be fair, it took 15 years to diagnose ME and 3 to get Disability, in which I went bankrupt paying out-of-pocket doctors to prove my case since regular MDs have no training.) I can't tell you how to go through the Disability process, but I hope you can find a support system in which to get you through it. It was a nightmare for me, and I now have PTSD from the doctors and the process, but it's the only reason I've survived. Good luck.
@@billb.950 what? what is wrong with you?
I know what your talking about.I have mitochondrial disease,fibromyalgia. Extreme exhaustion. Very rare leave my home. 10 times a year. Pain in bones and nerve spasms. Just want energy to get back to living. Wish you very best in your future.
So very sorry to read what's going on for you. I had some sort of major fatigue, too, could not go to work, to Drs or grocery shopping, but recovered after a few years. It was hell and back. Life isn't fair. Praying for a little miracle for those of you who want it. Much love. ❤
I got a virus 16 yrs ago from a lady that came into work coughing and spluttering. I caught it and never recovered. This story is an example of stay home when sick... she had quarantined in her office but everyone got it. I got so sick and after 2 months had to leave my job. They thought I had Ross River fever, Dengue, and many other viruses but all were negative. I was diagnosed with chronic fatigue and fibromyalgia.... then they threw on serum negative arthritis and gave me 30 pills a day. I felt slightly better but always sore and sick. I managed to get a good job in a hospital and started studying to be a scientist. Then I crashed, had debilitating migraines, vocal chord dysfunction, peripheral neuropathy, POTS, and fatigue. I had so many blood tests, and finally, after a lumbar puncture was diagnosed with Monocolonial Gamopathy of Undertermined Significance, MGUS. Turns out a rare side effect is all of those symptoms, an M Spike protein multiplying in my bone marrow, coating my nerves in my body, and reducing their ability to work. I had plasma exchange for 4 years, which changed my life, but now it's developed into multiple myeloma, and I'm heading for stem cell treatment. Chronic fatigue and fibro are not medical conditions, they are symptoms of an illness and sometimes those illness are rare and difficult to find. I can list 10 nerve conditions they tested for, MS, CIPD, and CIRS are just to start. An easy start for most people will be to ask for serum electrophoresis blood test to see if you have an M spike protein problem. I have started a carnivore diet to reduce inflammation while I wait for the stem cell option to become a reasonable option, and after 2 weeks, I'm happy to report a 50% improvement and 4kg loss of fluid/weight. Well worth other people in the same situation to look into it.
Long covid and Chronic fatigue syndrome do seem to have a lot of crossovers. As someone that has had debilitating chronic fatigue syndrome for 30 years I can tell you what I have learned. 1. Chronic Fatigue Syndrome (CFS) is really more of a "catch all" term for anyone experiencing debilitating fatigue. Long covid falls under that description. Think of it like how we classify "colds". Each cold virus is different. They just have the same symptoms. CFS seems to be similar. 2. CFS has long been a condition that surfaces after the body goes through a traumatic, physical event. Usually a bad reaction to some sort of infection. Covid would certainly qualify. But this can also happen from other traumatic events such as a car accident. My specific case surfaced after surviving a cardiac arrest as a young teenager. 3. We don't know how these traumatic events cause these lingering effects, or why only a small percentage of the population suffers long term while most do not. Research is ongoing. But, until long covid, many looked at CFS as a psychosomatic condition and didn't treat it seriously. It's interesting you mentioned how there was a treatment that helped those with EL begin to "come back to life" only to have the condition eventually overwhelm the treatment and bring them back to that same state. I participate in many trial studies to treat CFS. A recent one had a similar affect on me. My health and energy improved. I felt mostly better. But eventually, the CFS overwhelmed the treatment and I was back to 80% bed ridden. So, yes. EL is not long covid or CFS, but there are a remarkable amount of things that rhyme with all three conditions. I believe your conclusion that there will always be a very small percentage of a population that will suffer, permanent, debilitating symptoms from traumatic infections and/or other bodily stresses. We should be compassionate to those people.
Yes to all of this. Thank you!
Yes, there are similarities of symtoms following from concussions (Post Concussion Syndrome), minimal brain trauma, whiplash injuries, brain surgeries, post sepsis, autoimmune diseases, fibromyalgia, chronic stress, post infections like post-covid and ME/CFS. And probably more. Unfortunately, there is a lack of scientific research in chronic fatigue and accompanying symtoms, but post-covid may provide more resources into this. There are many who suffer from chronic fatigue, brain fog, and such symtoms, around the world.
The way I see it, Long Covid is basically a subtype of CFS. Maybe not all forms are (organ failure secondary to Covid would fall under the Long Covid umbrella, but maybe not the CFS one, for example) but many would. Many folks with Long Covid would fulfil the diagnostic criteria for ME/CFS. And as most forms of ME/CFS are post-infectious, Covid is - unfortunately - one of the many infections that can cause CFS symptoms. The fact that research into Long Covid caused a change of heart for some doctors and researchers who didn't take CFS seriously before, is kind of a double-edged sword, in my mind. On the one hand, it's great that so many people like you are finally getting some more recognition. On the other hand, it's kind of f'd up that it took a pandemic and another group of patients getting those debilitating symptoms for that to happen. The one thing I'm hoping for now, is that this renewed interest in Long Covid and other illnesses like it will finally provide some answers and hopefully also more treatment possibilities for many people out there who are suffering. And I too would not be surprised if one day we would find out that that are some underlying pathways that CFS has in common with EL.
Many viral infections trigger autoimmune illnesses. When thei nfection is already gone, but the body then starts attacking its own tissues and destroying them through chronic inflammation: joints, bones, neurons, arteries, you name it...
Treatments that are being developed seem pretty good at healing some of the symptoms but not the cause sadly. Hopefully the research being done on Long Covid can also help others suffering from ME/CFS.
I've got long covid, my PCP, my pain care Doctor and my Naturopath say my brain fog, lack of energy, balance issues are all related to fibromyalgia, which I've had for about 12 years. These symptoms became very apparent after I recovered from covid, but nobody listens to me. Argh! It's so frustrating. Also, new subscriber 👋🏼
Have you had your intracranial pressure tested?
it's because the health system uses fibromyalgia as a waste basket diagnosis. if you have enough of the symptoms and they don't know what's wrong, they'll often just give you that label and send you on your way. I am in no way saying you don't have fibro, but this is why lots of the health care system doesn't take it seriously
@@michellebaker6302 I've never heard of that. I'll see what my doctor says. I'm in Canada and our healthcare system is a mess. Just because it's universal health care doesn't make it good, especially in the Niagara Region 🇨🇦
@@FaithOriginalisme I probably do have fibromyalgia, I've had symptoms for years but nothing like what's been happening to me since I've had COVID. I can barely get out of bed, the dishes are piling up because I don't have the energy to do them and now I've got severe balance issues and I have frequent falls. My Doctor just brushes it off. I can't get a new Doctor either because no doctors are taking patients who take an opioid (even if medically warranted) or a benzodiazepine. Unfortunately I take both. I'll be pushing my Doctor for answers. Hope he'll listen.
@@JaniceWithTheTarlovCyst my best friend saved herself by studying and reading studies. She started with no knowledge while stuck in bed. It took her many tries while she was so sick. But little by little, she learned. Perhaps, you could try a bit of that and go to your doctor with studies in hand. I know I couldn't do what she did, but I have learned to research and my doctor is much more likely to listen
As someone struggling with symptoms similar to POTS, Dysautomnia, Dysphasia, PEM, issues with flashing lights, tremors, and even somewhat EL (to a degree of course) ever since I got COVID last year, I appreciate the added insight and all the information from the video. Thanks for speaking about Long Covid.
I don't have any advice except that I've dealt with the same issues my entire life so I can empathize with you. Stay strong and keep seeking answers.
Ive been disabled by pots, dysautonomia etc etc for almost my entire life. 20 years ago doctors were so clueless.
My mother had a form of Parkinsonism. She didn’t have the hand tremors, but she had periods where she simply couldn’t move. Fortunately, dopamine helped. But one thing I recall is that at some point we were told that an early sign of incipient Parkinsonism that is frequently overlooked is the loss of the sense of smell.
First thought was ... "Hahaha yea april fools mf!" Then, the "well shit..." kicked in
Real life dr stone shit
For me April Fools was yesterday… 🇦🇺🇦🇺🇦🇺
Another thing that's not an April Fools joke is the fact that certain substances in pIastic are mimicking hormones, and are making us fat, almost sterile, and giving us cancer. I think it's the next esbest0s. PIastic is over-used anyway, so it would be great if its use was greatly cut back, and the harmful stuff in it eliminated. Shrink-wrapped potatoes and cucumbers??
Me too ..now@@lochlanmuir2291
666 upvotes!
You talk about long covid but people forget that M.E and Fibromyalgia have been around for a long time and the symptoms are made to sound far far more trivial than they are. Those of us in those communities are hoping that long covid helps research into M.E, CFS, Fibromyalgia for once. We have been here suffering and are still here suffering.
My daughter (once the pinnacle of health) has been suffering from long covid since 2020. She has 90% recovered, but still has chronic fatigue. There is absolutely some kind of connection! When she eats a super strict anti-inflammatory diet her chronic fatique almost disappears. But as soon as she eats the wrong foods and disrupts her precarious gut health, she gets a bout of chronic fatigue immediately. The link is definitely there. Gut health and long covid suffering are strongly connected.
I have fibromyalgia which is a chronic fatigue and pain syndrome, long-covid friends, I see you, your difficulties both physically and mentally are totally valid. Everyone should advocate for the disabled. It is only a matter of time before you or someone you love is disabled, help us and your future self now.
I have some fibro & a lot of chronic fatigue, which has gotten worse since Covid. I don't have anyone to help me. My Medicaid won't pay to have someone help me with some domestic chores around my apt, because, it's not medical. How is it not medical?! My physical disabilities are why I need help cleaning in my apt!
I have fibro as well. I am un so much pain
Try MS.
That's what these vid's are for. Connect the dots.
I have fibromyalgia as well and some other things and it's hard it really is it's like we have to choose what's the most important thing for each day and get those things done and anything else is gravy but just pace yourself and rest when you need to and I eat cloves in the morning which help inflammation cuz I have arthritis from Lymes Disease but I also do smoothies in the morning and eat a lot of fresh ginger and vegetables from the farmers market and it really makes a difference because we are what we eat
Your connection with chronic fatigue is interesting. I’ve had it since I was 16 and the majority of people assume I’m lazy and need more exercise, even doctors. But now that people have suffered that from long Covid, I am being helped more and judged less.
I've had it since 14. I've not really noticed any difference since the pandemic. Not that I care any more.
I’m sorry, just keep swimming, swimming, swimming! My life motto.
Have you had a sleep study? Narcolepsy can cause excessive daytime sleepiness without causing cataplexy aka the stereotypical suddenly falling asleep that is typically associated with narcolepsy. It's caused by a disorder in REM sleep. People with narcolepsy have REM sleep shortly after falling asleep and for long periods of sleeping. REM sleep is when you have dreams where your brain is active. With nearly constant REM sleep the brain never gets to rest so it constantly wants you to sleep so it can get the rest it needs but no matter how long you sleep it never gets to rest.
Me too. 26 years of exhaustion. Well intended but poorly educated people who give bad advice thinking they can relate to the level of exhaustion and neurological limitations that we endure. Because it's invisible, people just can't imagine what they can't see. It took 15 years to get a CFS/ME diagnosis because literally not one person believed me when I told them how sick I was.
Chronic fatigue is what I thought of too. Especially the name EL (encephalitis lethargy) I had SARS late 90s, 27yrs old,healthy and nearly died. Full blown double pneumonia that req immediate attention. Pneumonia physical therapy and inhalers etc. Basically exactly how we settled on treating Covid. Antibiotics, inhaler,steroids etc. I never fully recovered from it. I went autoimmune. Extreme fatigue etc. Over 20yrs later Cvid is recognized as causing chronic fatigue. Lets hope this will lead to funding for understanding the condition
Love your stuff! I'm a neurophysiologist where part of my dissertation research is on NMDAR function, so it was exciting to hear you talk about them. They're wildly interesting receptors because while they are very prominent in diseases, they're also crucial for the "fire together, wire together" type of plasticity!
I had long Covid symptoms of joint aches and mental fog, so much so, that I stopped exercising and had severe sciatica causing me to lie down in the car when a drive was over 30 minutes. However, about a year ago, when I turned 60, I started pushing myself into walking 7k steps a day, even while my left hip and leg screamed in pain. But, the more I worked, the better I felt. Then 6 months ago, I started doing cardio videos Grow with Jo on KZhead every day. The consistent exercise took away the sciatica and Covid symptoms. I also lost 10 kilos and the aches and brain fog went away. I started doing cardio weight training recently, to drop more weight. I have 10 more kilos to get slim. I feel great now and often feel "the runner's high" when I workout. I hardly skip a day of exercise and often walk and do a video on the same day. I also increased my protein and fiber intake. You are what you eat and you must keep moving.😊
You had "short covid"; for people with the real deal exercising and pushing can result in permanent disability. Please don't give advice that can be very dangerous and when you don't know what you're talking about.
Diana, aka Physics Girl, is a long covd sufferer. I keep hoping to hear of some miraculous cure that restores her, and all other sufferers, to health and life. I miss her putting out new stuff, she was really fun to watch.
Me too!
Diana's story is so sad. Her husband and care giver needs support too
@@tonydagostino6158 yeah it's amazing that he sticks with her and helps her so much
Miss her too, still follow, hoping she's getting better.
My thoughts went to Diana too.
Blood test back in 62 or 63 showed I carried antibodies to Equine Encephalitis, and still did six years later. I was part of 2000 samples taken in my school district in Central Washington. Of those 2000 samples, eleven showed antibodies. My brother, two kids from a family that bought raw milk from our farm, and a kid who would have eaten at the church potlucks (Mom usually made strawberry shortcake with real whipped cream). Anyway, I now have Fibromyalgia, as do three of my siblings. We did have plenty of mosquitos...
That is absolutely fascinating. I’m sorry about your fibromyalgia though! 😢
I had no idea, or else had completely forgotten, that encephalitis lethargica even existed. This video was sad, but also mind-blowing.
As someone with narcolepsy, it is quite interesting seeing that COVID and other flu based diseases seem to be able to trigger EL, CFS, and even narcolepsy in some cases. I actually developed narcolepsy after getting a flu shot when I was in the army. It was the only time I had ever recieved a flu shot and the only reason I got it was because I was required to as part of the unit I was with. I regularly wonder if that had any effect on my narcolepsy.
Do you just drink tons of coffee and sleep alot to help get through your day? i think i have narcolepsy but had problems since fourth grade and at this point i fail to see the benefits of getting diagnosed😅😅
@@electricbolt3110 not really. Narcolepsy is different from CFS. If you suspect you may have either, I really recommend you talk to a doctor about it. Narcolepsy especially can be dangerous as you can fall asleep while driving, operating power tools, or cooking. I have fallen asleep in the middle of a conversation with someone, and I was the one talking at the time. As funny as that may sound, it really isn't. Like I said, it is always best to ask a doctor if you suspect you may have an issue.
When I was a kid in the ‘50s, my grandmother was always always afraid we would get encephalitis from mosquito bites. So maybe back in the ‘20s, people thought mosquitoes caused it?
@Nulli_Di Hmmm…. My great-great-great grandfather died of “ague” in December 1842 that he contracted while helping to drain the swamps of Nauvoo, IL. Maybe her fear was from historical family trauma. Oooo…. Such a rabbit hole!
Eastern Equine Encephalitis is a real disease that can infect humans. It's also called "Sleeping Sickness" and is caused by _Togavirus_ that is spread by mosquitos in the Americas. There are other variants as well.
Malaria would t cause it but there are so many diseases that mosquitos carry that there is a disease that can lead to encephalitis from mosquito bites. In this situation though, it's generally in Asia than elsewhere.
Where I live, ticks spread meningo-encephalitis, and that´s real and SUPERBAD. Luckily, there is a vaccine. Because, boy, are there many ticks in some years. They also carry Borreliosis, though. Huge pITA, but at least curable.
I'm still recovering from long swine flu 14-15 years later with a majority of the symptoms of long covid. Up until a few years ago we had no name to give this condition, all we knew is it was triggered during the swine flu infection. Several others I knew who contracted swine flu are still having nerve issues to this day, one was left in a wheelchair and one perfectly healthy person with no medical issues died. It was said on the news that only people with pre-existing conditions passed but I can confirm this is not true in at least one case (legally and medically confirmed). I myself received partial blindness in my right eye along with painful migraines, nausea, dizziness and other symptoms. I was bed ridden for 2 years and house ridden for a further 4. I pray that people take infections seriously in the future. It's sad to see friends currently suffering daily while risking loosing their jobs, homes and livelihoods over something that could have been prevented. Swine flu just didn't make enough impact at the time for people to remember
Hey! Same here! I am in the middle of a disability case due to the auto immune shit it started up in me. Not nice that you have it of course, but sort of "nice" to run into someone with a similar situation ^_^
I’m so sorry to hear of your suffering. The H1N1 pandemic was awful, I was working in hospital and our ICU was full all winter, so many young people were sick and died, I had never seen anything like it in my life. And yet, like you said, it’s barely acknowledged. I hope you are healing. ❤
I had something in 2013. I lost 60lb in a couple of months (10lb in 1 week) My personality changed, I had been very involved in a hobby for 20 years but suddenly had zero interest. Severe insomnia, mood swings and hemeplegic migraine. I was told it was in my head and was sent to therapy. It wasn't until 2 years later a neurologist off handedly said I had probably had a virus that affected my hypothalmus, but too late to do anything by then.
@@laa4438 The hypothalamus is a fickle little twat. If you have issues with temperature regulation, you MIGHT benefit from cold shower (Wim Hof has a lot of decent info, albeit a bit peculiar style). I got far less fevers after a month or so with those.
It was relatively recently discovered that the primary cause of death from the 1918 Spanish Influenza pandemic was damage from a cytokine storm - precisely what caused deaths from COVID. The virus invaded white blood cells, disabled by infecting those cells, so their response was blunted and basically when the immune system noticed the infection was unaddressed, went into scorched earth mode. The "stronger" the immune system, the worse the damage was. Preexisting conditions also made things worse. Had the Swine flu, it royally sucked and it took me six months to properly recover. Until then, I couldn't figure out how the flu could kill someone! During the April wave of COVID, before they had much figured out, I suddenly had trouble breathing. No other symptoms, but declining SPO2 (old military medic and still have my old pocket pulse oximeter and some other equipment that I personally bought), when it hit 85 and I was tripoding, my wife came outside (was out for the cool air, hoping it'd help me breathe) "Are you going to go to the doctor yet?!", my reply on seeing that 85 was, "fuck it, call 911". She didn't say a word, but went in and dialed 911. ED doctor said, "Well, I have good news, you don't have COVID". I replied that I was sure that it wasn't, all other symptoms being absent, so what was wrong? "Oh, a type of heart failure, due to a thyroid storm". "Oh! Thank God it's only heart failure - wait, did I just say those words?!" Doctor gave a badly needed belly laugh and said he understood. Was immediately admitted, as a thyroid storm can easily become fatal quickly, wheeled to my floor and to my horror, I saw beds staged in hallways and elevator lobbies, as well as rooms with containment precautions for COVID patients abounding. The rooms being occupied and containment didn't bother me, beds in elevator lobbies and hallways is a frigging hail Mary play. Thankfully, that never had to be implemented, the shutdowns helped blunt the worst. Admitted on a Saturday, was walking the halls in boredom by Wednesday and was discharged Thursday close to COB. Needless to say, I was even more attentive in masking when out and about getting necessities! My wife had so many checkboxes for preexisting conditions, that virus would've killed her. Ended up with COVID in August the following year, didn't know that I had it, as I had the shots and booster. It still damaged my mitral valve, I'd hate to think about what else would've gone sideways without the vaccine! Especially given my autoimmune disease already having my immune system on a hair trigger. Not taking stupid chances, as I only play stupid at meetings. Dad may have raised a dummy, but he didn't raise no damned fool!
I have fibromyalgia post contracting scarlet fever with secondary cellulitis infection at age 8. At age 54 in 2020 I developed transverse myelitis 9 weeks post an influenza vaccination. Subsequently became a quadriplegic within 12 hours of onset of first symptoms. The neurology team were monitoring me for the sleeping sickness condition at the time as part of confirming diagnosis. A lot of the niggling illnesses and neuro symptoms that presented in the lead up to me being hospitalised and post diagnosis had them all scratching their heads. This was a very interesting doco.
Thank you so much for posting!! I have been diagnosed with Parkinsonism and suffer from this EL. I'm going to mention this to my neurologist!! Thank you again!!
I have a bizarre condition that is like day one of having this condition. I have narrowed it down to either brain damage from a car wreck, or extreme adhd paralysis. Either way, I have been unable to get helpful care and it has basically taken my life away. Dopamine medications are the only thing that touch it, but the writing is on the wall. Its less effective as time goes on, and i do not currently have an rx. I spend days without leaving the bed, independent of mood or "willpower". If you are a Dr with any experience here, please contact me. I've recently given up after a 15yr investigation.
I’ll issue a strong disclaimer that I am not qualified to dispense medical advice, but you might consider “caloric restriction” aka fasting. Extended fasts have been shown to have positive effects on neurological function. You might try intermittent fasting first and work your way up. Just be careful, take it slow, and trust what your body tells you.
Just posting to bump the thread. Best wishes.
Have you considered looking into the carnivore diet? It can help with neurological issues
I hope someone sees this who can help you. Bump
I'm not going to recommend a specific diet because that's dumb, but if you haven't ruled out foods/substances yet it may work out. Gonna be difficult when you have trouble moving though
Shoutout to the study that suggested long covid was due to the epigenetic changes. They noticed a number of genes that were turned on during the bodies battle with covid that subsequently didn't return to their dormant state after the body got rid of the virus. Bodies being stuck in fighting mode against an enemy that it's already beaten essentially.
Do you have a link to the study?
Long COVID = vaccine injury
Yeah, I'm gonna need to read this.
Couldn’t be the vaccine that was designed to change your dna could it?
So... Immunity
My grandfather was born in 1901 and i love thinking of all the change his life went through! CRAZY! WW1 at 19, Spanish flu at 19 or so, global great depression at 28, WW2 at 38, Polio in the 40's, let alone all the technology advances! Cars, phones, radio, TV, indoor plumbing, in home heat and so much more!
The first ever video analysis on Encephalitis lethargica (quite lacking) I've viewed. Good work.
Robin williams movie, awakenings. Great movie.
Hard watch to this day. Beautifully tragic.
@@milesteg8183 Agreed, I have a mental illness with some similarities. Making that film hit home hard. I still have my mental faculties and mourn for those who don't.
Coincidentally I Totally watched this on Saturday it’s on Hulu 😂
@@joshschleininger8888 And Disney +
And don't forget Bob de Niro as the patient!
I recently saw the Netflix version of Neil Gaiman's Sandman comic that features a "sleeping sickness" in the early 1900's that lasted for decades. I had no idea it was based on a real condition! I guess that is what happens when you trap the Lord of Dreams.
Referencing "The Sandman" gets your comment a thumbs up, my friend! Have A Nice Day!
Was "The Sandman" originally created by the Great Jack (King) Kirby? Even the Great Curt Swan admired him a lot. Kirby was so amazing. Curt told me that himself when I met him. (Wow)!
@@davidmacphee3549that version of the Sandman was created by writer Neil Gaiman and artist Sam Kieth.
Was it any good? I kinda forgot about that show until now, Netflix blue balled us with it in their new release "worth the wait" section for like a year and then barely mentioned when it finally came out
@@arthas640 it was pretty good and faithful to the source material. Production of S2 got delayed because of the strikes last year.
A friend of my daughter is still suffering from long covid after 2 years. It took the form of muteness - the friend can only speak in a whisper, WHEN she can speak at all. At first doctors said it was psychosomatic, but recently she discovered that when she eats REALLY spicy food, she can speak for 24 hours! Naturally none of her doctors are the least bit interested in looking into it, but at least she's found a workaround. For now.
I am struck by the compassion in your delivery. I immediately subscribed.
Remember a friend of the family who visited our home 5 nights a week in the 1960s. He was born in the 1890s. The family fed him, he talked a little and then fell asleep for a couple of hours in a chair then went home. The family said he had "sleepy sickness". Guessing the man never worked. Family are dead so there's no one around to explain what happened. What i do remember is the man dressed as though it was the 1930s. Come to think the man did have a tremor. Nobody back in the 1960s seemed to think a there was anything particularly odd about any of this. People spoke of "sleepy sickness" as though the man was lame in one leg. It was just something that was there.
I really appreciated this video Joe. I am a long covid sufferer with quite a few neurological effects that the doctors still haven't been able to figure out. Over 2 years ago I had my covid infection which was fairly mild for me, but 6 months later I began to have some strange neurological effects starting in the left side of my body. Over the course of time it spread from my left leg up to my left arm then into my face, then right arm right leg and then the rest of my body. Muscle twitches were the first symptom, then cramps and spasms, burning pains, tingling and dystonia. Eventually I developed dead spots where I have no nerve sensation at all, mild hand atrophy, and joint issues that have led to dislocations. My body aches all of the time, I struggle with fatigue, and have issues with my autonomic nervous system and balance problems. I walk slower than I used to with an observable limp, and my physical strength is down in some places by 50% from where it used to be. But I don't let it stop me. I still live a full life as much as I can. I may be in a lot of pain, but I'm stubborn. And I still go and hike and explore and adventure as much as my body will allow. 2 years on and many medical tests later, the doctors still don't know what's wrong with me. But the theory of a covid caused autoimmune condition has been floated, but with no positive ANA, it's hard to get approval for further tests. Like many of these people, I'm now in limbo. Nobody really knows what to call it. For now, it's just been generally diagnosed as fibromyalgia and small fiber neuropathy, with likely more that will become clear as time goes on. Sorry for the long comment, but this video really hit close to home. Covid upended my life, and led to quite a few scary moments waiting for test results for very serious and fatal diseases to come back. But no real answers yet.
Did you get vaccinated?
Please research Chronic Regional Pain Syndrome. A loved one had it. Extremely debilitating. If the symptoms match, INSIST that you see a specialist. It could save your life (as in living it the way you want to.) Physio helped my loved one. It is 'somewhat' neurological as it can be worsened with a poor mental state. I really hope you find the answers you are looking for.
The neuro is from the vaccines. My mom's had the exact same but never had Covid just vaccinated. Dr Campbell on yt explains the neuro and has guests who tell their experiences
Holy hell this is fascinating. I had no clue about this and things like this is exactly why I love this channel. You do such a great job at explaining complicated topics in a simple way for everyone yet being extremely informative so it wouldn't be boring to those that have some knowledge about it. Just a perfect blend and you're a great narrator
As someone who has Narcolepsy, which I got after having pneumonia a second time in my 30s, I've always thought the long covid symptoms were similar. So like narcolepsy can be triggered by: bad chest infection -> auto immune issue -> bunch of receptors, their chemicals and the factories get screwed up....
I was very close to my great grandmother who was born in 1899 , and we used to have great conversations about her life and experiences,and I remember one conversation about the Spanish Flu epidemic and also the “sleeping sickness” that followed the flu epidemic. The one thing that stuck with me is how the threat of the sleeping sickness terrified people because you were basically conscious and stuck in a body that didn’t work anymore ( kind of like ALS ) . The thing that really frightened people was unlike the Spanish Flu , which people understood,the sleeping sickness was seemingly random and no one knew what caused it or how it could be contracted . A common belief where she lived at the time was it was spread by mosquitoes because apparently there was a tropical disease with similar symptoms- I have no idea how valid this thought was and neither did my grandmother.
Wish I’d had sense enough to talk to my grandma about history. She was born in 1900 and would have been full of interesting things to know!
Joe, I've had ME/CFS since 2012, after a viral lung infection. I think post viral illness has been dismissed for a long, long time. My hope is that with so many suffering after COVID infection, that medical science will make some progress on treating post viral illnesses. Thanks for another great video!
Strep is something we see so frequently that people aren't worried about it, but is NOT something you want to mess with. There's so many stories out there of people not getting treatment for a strep infection and they get necrosis or they might end up like me - with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). Just woke up one day as a kid and started to exhibit OCD symptoms and severe tics. There was a physical reason for these neurological issues. I'm lucky that my parents looked into it and got the strep infection treated, but the symptoms still linger post-PANDAS. I wonder how EL connects to strep and PANDAS even more, as it was described to me that the disease attacks the receptors in the same way that was described here. Nonetheless, Great video! (edited for spelling)
I developed fibromyalgia after getting really, really sick visiting a friend, and after four years of dodging it, caught Covid very early this year. The most surreal thing about having both was *feeling* the blood/brain barrier being crossed by the Covid. Like, physically feeling it. Absolutely bizarre. Very hard to describe other than it feeling like my skull was shrinking or that there some sort of vacuum-sealer being applied to my head. It's a shame that so few of my doctors actually believe that's what I was feeling but it was so different from a normal fibro flare.
My grandmother's brother suffered from the recoverable-with-Parkinsonism version of this (she always just called it "sleeping sickness and Parkinson's") and then later passed away from Lou Gehrig's disease. Long before I was born, of course. Poor guy definitely got a raw deal.
My gf has long covid and from the research ive read there are many overlaps with ME/CFS. Its a shame bc many governments are cutting funding for long covid research and watching my gf (who studied physics before getting sick) struggle with taking a shower or get dressed is really tough. I hope we do find a cure or at least some way to reduce the fatigue and dizzyness so we can all resume our normal lives...
The USA is still funding Long Covid research. A year ago the NIH reported pouring $1 billion into Long Covid research projects, down from $1.15 billion in 2021. Two months ago NIH putting another $515 million into research. You might be interested in the MedCram videos about sunlight and near-IR for treatment of COVID and possible treatment of Long Covid. It appears the light affects mitochondrial function directly... we can hope. As for the actual day by day suffering, I have no words for the bleak outlook at this time. I can only wish her luck because there is not much else right now.
Did she get vaccinated?
Dr Pierre Kory says most long covid is actually long covid vax
@Glipsnarp I don't see why that information is relevant, long covid affects both people who were and weren't vaccinated. I think it's easy to blame something on whether was vaccinated or not, bc if I say she is then she got it bc of the vaccine and if she isn't then she got it bc of the vaccine...
@@Nico-ch9ul well the people who suffer from long covid are the ones who took the vaccine. Every single person who I met who suffers some sort of long term symptoms, have been vaccinated. The folks who didn't take it all got over covid in a few days and never got sick again. No symptoms after. I understand you have been tricked into believing there was a solution, but its okay to admit you were wrong.
This came across my recommendations while watching Sandman on Netflix for the 50th time. I've been meaning to learn more about this. Much appreciated!
Very interesting. I was diagnosed with Fibromyalgia and Myalgic Encephalomyalitis whose symptoms started in 1990. It took 5 years for a diagnosis. I became bedridden from this. In 2022 I got Covid and later was diagnosed with Long Covid. A year later I was diagnosed with Varicella Zoster Viral Meningitis. It's amazing I'm still alive. I'm confident someday someone will be able to draw a line between these illnesses and see how having one made me predisposed to having the other.
I don’t have long covid but i am bed ridden from Hyperadrenergic postural orthostatic tachycardia syndrome. One day my body said…nope i cannot tolerate gravity. My nervous system broke from ovarian cancer or the surgery to cure it. There is no treatment, no cure, and no one seems to care about curing it because only .2% of the us population is disabled by it…its not profitable. Well…until long covid. A lot of those patients are getting diagnosed with my condition. My only hope is that long covid brings breakthroughs into finding out how to fix my body. It just seems like they give up on nervous system disorders because they are too hard to figure out. But it really does come down to, if we research this, how much money can we make. So i lay in bed, can get up for 10-60 min, and run back to bed to feel better again. Im going on 8 years of living this way, watching the world pass me by, losing friends and family because i cant get to them (since i lost my car, i can still drive). My world is online now, its the only thing that keeps me going.
I really hope you recover ❤ ( have you tried Taurine or PEA supplements ?)
@@dogsaregods6748 from a disabled person's perspective, this is so goddamned infuriating. Just don't ask. Assume they've tried everything. This is the modern version of "but have you done Pilates?"
I'm so, so sorry. I don't have POTS but I know fellow ME folks on zoom who do. It seems like one of the most limiting illnesses/symptoms. Once when I complained to my brother who is in biotech that ME gets almost no funding, he said, "There's no money in it." that response was heartbreaking. We are all praying that Long Covid, since it's getting lots of funding dollars, will achieve some useful research that could be applied to the constellation of similar illnesses that are being ignored.
@@dogsaregods6748having a disability doesn't mean people can't parrot ability bullshit
I hope you can be helped by something soon, it's the one upside of such a shocking pandemic, a lot of folks who were previously unrecognized may get some help and funding. I do hope you can get a breakthrough
One thing I find interesting is that narcolepsy also has this type of correlation to epidemics and pandemics. There was an uptick in cases after the Swine Flu of 2009. Not a scientist by any means, just did some of my own researching when I was getting tested for and diagnosed with narcolepsy a few years back, so take this with a grain of salt. But yeah from what I read, some researchers suggest it could be an autoimmune disorder that attacks certain areas of the brain controlling sleep cycles. It's scary how little we really know about the lasting effects of some viruses.
Narcolepsy can correlate to epidemics? fascinating. Agree on the lack of science on autoimmune and brain disorders - also gut, since the immune system is 90% located in the gut. I recently learned serotonin largely resides in the gut too, not the brain. The brain-gut relationship is only just beginning to be studied. Oh well, I'll be dead before science find answers to Chronic Fatigue Syndrome. Wishing I could donate my brain tissue to help with evidence!
I’m a nurse, and I once read an article about CFS and how a doctor believed it was caused by/after effects of a viral infection (he said mono, I think) but I hope more research is done in that regard.
Two members of my family have ME/CFS. They have been ill for over 25 years with periods when their symptoms lessened but they have never been free from it. The two people who lived together both became affected within a few months of each other. The symptoms are extraordinarily similar to Long COVID so the study of Long COVID should help sufferers from ME whose etiology remains mysterious.
I was diagnosed with CFS/Chronic Fatigue Syndrome several years before the pandemic. In January 2020 I had COVID (flew home through 3 international airports through Chattanooga from 3 weeks of holidays with my SF in 2019/still had pneumonia in February 2020. In March of 2020 I was diagnosed with "Covid Toes," and my toes STAYED PURPLE for over a year (still have purple photos of them from after March 2021). I've since ALSO been diagnosed with Long Covid due to marked increase in fatigue levels since my infection (and second infection over Christmas 2022). I currently sleep 15-18 hours a day which SUCKS. I was also placed on a walker in 2022.
Covid toes😂 This country has lost its mind since Covid . The media really broke y’all brains
@@JoeRogansForehead I had them, it was frick'n bizzare. Little red dots, then small sores, then big sores, eventually swelling, burning throbbing pain in my hands and feet, a day later, the pain subsided my hands and feet began to heal, then all my callouses schluffed off, like I mean every callous I've had on my feet since I was a teenager. Weeks later, my nails started splitting, I was gluing them back together with superglue and scraps of paper. It was WEIRD. Then it all went away, my nails eventually grew out until the problem areas were gone, and my callouses slowly came back. Except for being gross and cringe, and a couple uncomfortable nights, for me it wasn't even that terrible. Horrible to see OP had it much worse.
CFS or other post-viral autoimmune disease and THEN getting LC - right there with you. Horrendous
Did you get any shots? These problems may be side effects.
And you still dont understand its the fake vacccine that harms you?
I had an old family member that was born in 1889 and moved from Nacogdoches, Tx -> Rule, Tx in 1914. IN A COVERED WAGON... She lived until early 1998 and lived through both World Wars, cars, the invention of the airplane, rockets, satellites, a man on the freakn MOON. What changes would have to take place for us to live through that kind of change???
You'll know soon. Similar big changes are knocking on the door right now. Like AI, robots, radical life extension, mainstream gene editing, curing all diseases (including cancer), large scale space colonization, lab grown food, and more. The greatest impact will be AI and robots. That's going to be the biggest change in human history, and it's already in progress. In 5 years most or all white-collar jobs will be automated, and 5-10 years later blue-collar jobs too. Unemployment will start to increase soon, and accelerate until hitting 100% sometime in the next decade. If we manage the transition well, we'll enter a post-scarcity and post-labor world. It's like every human on the planet becoming a billionaire. Money will lose meaning. We'll have to radically re-imagine society. I think the US will have the hardest time, because American culture revolves around money, work, and self-reliance. Well, that's the optimistic version. There are many ways this can go horribly wrong, including human extinction. But one thing I can guarantee, the next few decades will not be boring.
My grandparents were born between 1898 and 1903 - died late 1980's - early 1990's. Great grandparents (who I remember !) were born 1870 and 1880 - died 1960's. How much their lives changed is unbelievable today.
Wow, 1889. Jeez. My great grandmother lived from 1917 to 2012. She was in middle school when the Great Depression hit. And get this, she traveled of course, but lived that entire 95 years within the same tight radius of an area. Was the #1 most senior member of her synagogue at her death.
Yeah, I remember my great-grandmother on my father's side. She was born in a covered wagon as it crossed the US, and was fed from an eye dropper because of issues with her mother's milk coming in. MADNESS.
I know of someone else who was born in 1889. He died in the mid 40's though.
I was diagnosed Long COVID just after I suffered longer after my first COVID infection in December 2020. It has ruined my life. At least I was lucky to be able to retire early in 2023. I agree there is a neurological disease part of it. Fatigue, brain fog, Insomnia. I think depression because of the change in lifestyle. I used to be in shape and go to the gym. Now I have no stamina. I keep hoping for the day when I will feel normal again. But I probably won't. Thank you for the video. Well done.
34 years ago I contracted bacterial meningitis with encephalopathy. I had the awful headache plus equally severe pain in my hands and feet. The headache subsided but the pain in my hands and feet remained. No one has been to explain that. I figure it’s permanent nerve damage. I was fortunate in that it did not cause any damage to my intellect, loss of limbs due to secondary sepsis, loss of hearing, death, etc. It turned my Fibromyalgia into Fibromyalgia on steroids and triggered a cascade of autoimmune and neurological disorders which left me severely disabled. Any subsequent illness, like the flu, often put me in the hospital/ICU and worsened my conditions permanently. I’ve been living in quarantine for many years now. I’ve read all of Dr Sachs books…those poor people who had influenza/something else.
I didn't think I lost taste or taste smells with COVID, nothing tasted lastingly burnt or soapy, but lately I've been more aware of ambient enviromental smells. Like sometimes my noseblindness wears off? Hits me at the oddest times I think I smell an odor and wonder where it's from. It's also been a big spring tree allergy symptom year for me.
The problem being that loss of a sense of smell is a known disorder going back over 100yrs, which unsurprisingly leads to a loss of taste. Smelling odd smells like burning, cats urine etc can be caused by many neurological states including tumors, pituitary gland issues and strokes. Its not just a post viral issue, yet it can be caused by the common cold.
Shout out to Physics Girl, Diana, still suffering Long Covid.
Hardtail Party (here on youtube) has a milder version of the same, which has made it impossible for him to effectively demo mountain bikes. My wife is somewhere between those two but she's not a youtuber. I hope for everyone's sake a solution is found immediately if not sooner.
This is what I thought of too when he mentioned the flu and these fatigue symptoms. There is definitely some link between the flu, sleeping sickness, and the immune system that causes these complications.
Somebody tell her to wear nicotine patch for 6-7 and, it'll go away
I LOVE HER!
Everyone I know who got long covid took the jab
Awakenings was SUCH a good movie! RIP Robin Williams
One illness - Anti NMDA receptor encephalitis - I encountered a number of times in my career spanning 23 years as an ICU RN. It's an autoimmune illness wherein the body's immune system attacks the NMDA receptors in the brain causing a variety of symptoms. Altered mental status was definitely one of them. One patient's (adolescent male) symptom was striking in that his spine became extremely and rigidly hyper-extended to the extent that only his head and heals touched the bed when laying on his back. After some months he recovered fully and came back to visit us. It was not unusual for these patients to have a teratoma (though not always), a type of internal tumor that may contain tissues resembling organs or body parts, including neural tissue. In some cases, teratomas can trigger an immune response, leading to the production of antibodies against NMDA receptors. These antibodies can then cross-react with NMDA receptors in the brain, causing anti-NMDA receptor encephalitis. Check your pronunciation of amyostatic - the "my" is pronounced precisely as it looks - my.
My brother has long covid. He can still work full time, but he's frequently exhausted. My mom and I are chronically ill unrelated to covid. I have POTS. Should have been diagnosed in 2016, though I have mild symptoms years earlier. My mom got sick in her early 20's and has never had a diagnosis, too much medical gaslighting, but its likely also a form of dysautonomia.
"There may be a link between Chronic Fatigue Syndrome and Long COVID". ... This is an active area of research for medical researchers. As a CFS patient, I was recruited to participate in some neurological research. The subject group had three pools: CFS patients, Long COVID patients, and healthy control subjects. FMRI and blood sampling was being used to study similarities and differences in neurological responses. As I understand it, the study I was participating in was just one of many avenues of research. When I told my niece about the study she said: "so you had long COVID before long COVID was cool." Pretty funny.
Federal agent.
I developed symptoms of cfs/me soon after having surgery on my right wrist in November '22 (carpal tunnel release) with extreme fatigue, dizziness, confusion (brain fog), increased generalized pain and sore throat along with worsening of my orthostatic intolerance (I've had a diagnosis of dysautonomia since 2012) after excertion of any kind (post exertional malaise). All of these symptoms that I developed worsened after having my second surgery on my left wrist (April '23) (carpal tunnel release and ulnar nerve decompression). I got lucky as I have a neurologist who has a good understanding of cfs/me and I was diagnosed with it in July '23. I then got a new sleep medicine provider who happens to be a ENT surgeon. I've found that I would get about a 3% reduction of the symptoms after getting lidocaine spray to numb my throat so that he could scope my upper airway, so he ended up scripting me for injectable lidocaine (2% with no epinephrine) as it's sterile for me to nebulize it to help with reducing the symptoms. Lidocaine tastes fing nasty as frick, but the tiny reduction of the symptoms makes it worthwhile. My neurologist and ENT provider thinks that by reducing the sore throat that I get after exerting myself helps with the reduction of overall post exertional malaise episodes length time wise. So far, this seems to be true (reducing the triggered pain from post exertional malaise episodes which is causing further exertion on my body helps to reduce the time frame that I'm in a post exertional malaise episode). I don't understand it and neither do my providers, but we are not willing to question what seems to be helping.
I got CFS/ME from mono in January 2020. Truly ahead of my time. I'm lucky that it's pretty mild and improves when I take stimulant medication (ADHD meds) but when I forget to take my medication I'm basically only slightly better than bedridden all day.
well, as long as they take the vaccin status into account, I'm all for it. also for the people that have this, look into dr Sarno's work, I believe a lot of it is psychosomatic and can be healed (not all of course), but if you have emotional issues/stress etc then that is likely.
@@woy8The problem is that “psychosomatic illness” shuts down the conversation and is very patronising. I developed fibromyalgia in 2003 after falling down in the shower. My ribs were so inflamed that it hurt to breathe. I was denied help because, “It’s all in your head.” Meanwhile my shrink became so infuriated at her colleagues, she asked me to refer anyone saying “psychosomatic” to her. Systems within women’s bodies are particularly poorly understood. Endocrine, immune, lymphatic and reproductive systems of women are not copies men’s. Most chronic illnesses have physical, not mental, origins. Just because the physical origin is unknown does NOT mean that it is mental. Everyone should do what she thinks is best. This Dr. Sarno has probably helped many people. Good for him. But theorising that most chronic pains are most likely psychological is just BAD medicine.
I was diagnosed with post viral syndrome after Covid 3 years ago and it has caused me tachycardia which really caused me trouble in my daily life and caused anxiety. I am almost back to normal now but still have episodes.
My mother went into hospital around 1951 with polio. She recovered but walked with a limp from then on. I lived with my grandma who told me mother had "sleeping sickness" and as a four year old I had no option but believe her. I was told the truth much later and then wondered why I'd been lied to....
I remember watching the awakening movie in 8th grade.....it greatly disturbed me. Being locked in your own body is such a nightmare for anyone to go through.
I saw it on TV at some point, don't even know when or why.... Didn't know anything about it or what it was even called. It has stuck with me since I saw it. I had a feeling this video was about that when I read the title.
same here, starred the great Robin Williams in a completely serious role, good movie if anyone hasn't seen it!
There was also something that happened in Incline Village, NV in the mid 80s that left many people with Chronic Fatigue Syndrome. They didn't investigate it thoroughly enough at that time and basically said it was a psychosomatic condition. Many patients were dismissed. Here we are today with ME/CFS and long COVID.
The history of ME/CFS and how it’s been mistreated and abused would make a great video! With potential to help millions of sick today by raising awareness.
@@Bunnyliver52 I'm sure you must be familiar with the 2017 documentary, "Unrest." It made the long list for Oscar's best documentary that year but didn't make it to the short list. If it did, perhaps more people would have seen it. It's not exactly a history, but it gives a lot of examples, mostly extreme ME. One of the most compelling features, in my opinion were: 1. Comparing the stigma of ME to how people with MS were believed to be insane prior to the invention of brain scans, and, 2. The conditions in (Denmark? my memory is foggy) where a girl was forcibly removed from her home and taken to a mental institution where she only got sicker, because in that country (at the time) it was believed CFS/ME was "in their heads." Like you, I'd like to know more about the history but I suspect, CFS/ME has been so badly stigmatized that it's been virtually unrecognized until maybe the 1980s? (Remember the Yuppie Flu?) Unfortunately it would just be a history of so-called "lazy people."
I was diagnosed as Diabetic in 2018. I did not get covid until may 2022. It's the only time I got it and it was like a very severe flu. The symptoms lasted nearly 5 days whereas any time I'd had the flu in prior years it lasted around 2-3 days. However, since getting covid I've had major issues with being tired a lot. Sometimes it's not even being tired, it's my eyes...they feel heavy or like there's something wrong with them. Just really weird stuff.
I used to work in a psych hospital and in those two years i saw two patients come in and were medically diagnosed with dystonia… one had a rigidity in her right arm where it would lock in place (at a random angle) and no amount of physical manipulation or muscle relaxers could move it (we tried). It would last for a few hours and ease up, only to come back at some point. The other patient was similar to this, but if i recall, she would lock up at the waist. I wonder if dystonia is related to this in a small way?
Thanks for mentioning Long Covid 🙏 Post-viral illness has long been ignored as ME/CFS patients are well aware. People are still getting disabled by this virus, one of my friends got it this winter and hasn't been able to get out of bed let alone even use a phone to text me and stay in contact. It's scary
Ive had it for 3 years - its has utterly destroyed my life. It is exhaustion on a MOLECULAR level that I can not describe. Its like your iPhone when the battery is warn out - it changes fully, then 2 hours later it just dies. One second its working then black screen. I dont expect people to understand cos there is no way I could have understood it if I didn't have it.
Just wondering did y'all get vaxed@@piccalillipit9211
@@piccalillipit9211that is a perfect description of how I feel. ME/CFS from a mono infection in January 2020 here.
@@freyathewolf4909Im sorry -= I KNOW what you are going through. I was 5'8" 200lb of muscle at the gym 6 days a week, ran 3 miles a day with my dog halfway through writing a book on new training routines - I no longer walk with a stick - which is GREAT, but I did for 2 years. I have to save my energy up to go to the centre for shopping, Im borderline able to look after myself. I walked 1 mile today - had to sleep for 3 hours. My Covid infection was week 3 of Jan 2020. Im convinced I got it at the gym - its next to the port of Burgas - literally the first port of call in Europe for ships from China and lots of the guys on the ship use the gym.
@@piccalillipit9211 You Have my deepest sympathy. My friend at uni, got Epstein Barr and developed CFS. This was in the early 80's. I also had a friend with post polio syndrome. These post viral conditions have been around for decades but they are not dramatic fund raiser diseases so they don't get the research. Your comparing it to the iPhone thing is spot on, just like my friend. The disease is bad for anyone but she was a dancer. It destroyed her life top.
I had encephalitis when I was younger and remember feeling really weak and almost unable to move. While I did eventually get treatment, it seemed to almost miraculously go away.
This is so interesting to me! A couple of years ago I developed symptoms that I couldn’t understand: both of my shoulders and upper arms just contracted, all the muscles and wouldn’t relax. There was also nerve pain. I thought it might be shingles. Eventually the right side started to loosen, but on my left the contraction lasted over two weeks. At the same time i became very confused and disoriented - got lost driving to work, a route i’ve taken for over 5 years, for example. I just forgot where i was and where i was going. My doctor was on vacation and Kaiser gave me an apt. with a terrible guy that basically told me i was fine just menopausal (i was 46, and nowhere near it) By the time my doc came back, the symptoms had resolved, so i never did get to the bottom of it. He thought maybe it had been encephalitis. I wondered if it was related to having had COVID, and now I wonder that even more! I knew a couple other people who also had terrible pain in their necks and shoulders at right around that time, but they were both told it was a physical issue. One guy’s doc said it was how he was holding his head during ZOOM calls, i mean…maybe? But why all at the same time, and no one since? It’s just been this lingering mystery to me.
My precious psychologist got long Covid... she had to quit her job due to how bad the symptoms were... I'd been seeing her for 11 years at that point, she's even the reason I finally got diagnosed with Mast Cell Activation Syndrome... She saved my life.
Thank you for this. I had a childhood friend who supposedly had sleeping sickness back in the 1960s. I was very young but to the best of my knowledge I never saw him again…. I now wonder a bit about the diagnosis but in any case this is fascinating. My daughter has a post infection autoimmune situation and so far no one has any solid diagnosis but she and her team have managed it enough so that she has a full life we once thought impossible. Hopefully more to come.
Unless I missed it, you didn't answer one question: although these poor souls were living statues, were they aware of their surroundings during their statuesque period?
Was left wondering this as well.
I think he mentioned that most of them were aware, but just didn't have a desire to communicate. They just ceased to care about anything except sleeping.
I did kinda leave that hanging didn't I? My assumption is that many of them were not aware of their surroundings, based on the fact that many responded poorly to "waking up" and realizing 40 years had passed. If they were conscious and aware the whole time, it probably wouldn't have been such a shock. Also in the movie, "Awakenings" De Niro's character, as he starts to slip back into his state, says that everything stops, and that there's just nothing, and then he wakes back up. He says it's like dying. But I didn't want to quote the film because they did take some liberties in it (like the fact that Dr. Sacks is renamed Dr Sayer). So yeah, my assumption is that they were just not there consciously. Really not sure which is worse.
OK but was it an experience from the CIA or even the aliens? Or maybe some aliens working for the CIA??
@@joescottThank you for this addition 🖖
I was bitten by a mosquito and got Ross River virus. For 2 weeks, I slept and couldn't do anything. I had lots of other things happen with the virus. I was dia gnosed with chronicfatiguee syndrome and Fybromyalgia about 8 years after it. This explained so much to me. My Dr told me to keep as physically active as possible as it would help me. Took the advice and ran with1o to speak. I am always in pain and my sleep is rubbish, I sleep very poorly but force my to keep going, sometimes it's hard to do but I have to for me
I have M.E (CFS as a 'new name' was created as a way to trivialise our illness). We have peers currently in hospital being denied care because of the stigma around it suggesting its psychosomatic despite many studies showing biomedical problems. We have lost many of our peers, are 6x more likely to take our own lives as well. *Still* people minimise our illness or deny it even exists. I've so far lost 17 years and 5 months of my life to M.E, severely affected and been unable to have a life I wanted. No partner, no kids, and constant pain. Its a level of grief I cannot express that not only do we have no treatments but *as well* we have to deal with stigma that often causes abuse or neglect. Cruel doesn't even cut it. I hope for everyone elses kids sake that science and medicine get their heads out of the clouds and actually help our peers of tomorrow so none of them experience the pain of living the lives I and my peers do right now.😊
Okay you got me, I subscribed just for one line and one line only. "Constantin Von Economo which unbelievably isn't the name of a Marvel villain with the power to destroy the economy". I got a good chuckle out of that. thank you.
Glad I'm not the only person I crack up. :)
That mortal sin is called " Usary".
I suffer from Autistic Catatonia when overstimulated. I can attest personally that being trapped within my body, sometimes aware of my surroundings, sometimes not, is like something out of a horror movie. It is a hell, a nightmare. And the longest it's ever lasted for me is only 13 hours. I cannot fathom 40 years... As an added joy, I do also suffer from Long Covid. I get hemi-dystonia.
Thank you for the best wishes. I'm overwhelmed by the kind regards from so many people suffering the way I do and I wish you all the very best of what you can get from life and God Bless you all. With Love and Regards. Cheers!
I had a relative who was born in rural America in 1900. Through her long life she went from horse and buggy with outhouses, no electricity, and hand pumped wells to space travel ! I asked if she was amazed at it all. Her reply was that things had always been changing and that was what she had always expected.
My grandma( born in 1912)and her younger sister had the "Spanish Flu" as young children. Their mother who was pregnant also caught it ( it caused a premature birth/still birth) . Their mother was also pregnant when the next flu outbreak happened and neither she nor the baby survived. My grandma and her sister both developed Parkinson's later. I've always suspected that the flu was linked to their Parkinson's as no one else in the family has been diagnosed with it before or since.
I had mononucleosis when I was 17 which led to life long fibromyalgia and chronic fatigue. I am 63 now and have lost jobs, friends and life experiences and opportunities due to it
God Bless you and know that Jesus is always ready to listen to you.❤🙏❤️
Sadly fibro is not important enough to be taken seriously by most including medical people ( I have it too). Long covid is the new, sexy health problem and what little interest in fibro will no doubt vanish. Science may be based in logic but people are not. 😮😔
Try adding iodine to your diet. Many videos on this.
@@evesloan7895 You have no idea how many people in the chronic disease community have tried iodine. My environmental doctor put me on daily iodide for 10-11 years. It didn't cure my ME AND it caused me to develop Hashimotos along with some other unexplained issues that only resolved when I decided to go off of it. (Still have the Hashimoto's though :( I know it does help some people if iodine deficiency is the problem but ME/CFS is whole 'nother ballgame unfortunately.
I'm currently suffering from Long Covid for about 5 months now. I'm hopeful I'll get back to my old self. I can "barely" get up in the mornings (used to be a morning person), have no zest for life, can not sleep at night very well, and feel like my internal battery is on 40% all day long, and am currently sitting on my couch with my fat cat watching KZhead. I push myself to ge tup and do things just in spite of it all, but it is daunting. I don't think I'll have ti forever but it isn't fun. And you're right in the video, often times we just don't have the answers as to why and have to do the best with what we have. There is more intense suffering but I'd like to get back to the business of "ordinary human suffering" not this kind. But, I'll keep swinging, I'm bound to get one out of the park eventually.
Anyone else with virus induced CFS/Fibromyalgia feel triggered when hearing the swift acceptance of long COVID after being told for years of decades that you can't still be having symptoms from that virus that bed bound you for months, and having everyone around you imply it's laziness or depression. The description of being so tired you can't stay awake or move sounds familiar, and I'm glad I've found ways to stay out of that condition for now, but it's always at the back of my mind that it could come back at any moment, particularly when my mental faculties start fading.