This Disease Turned 5 Million People Into Statues, And Then Vanished

[@hootinouts]

It is always disturbing when science cannot establish any answers to a disease that is still around.

[@flagmichael]

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.

[@yoeyyoey8937]

Makes you question disease pathways

[@Kitties-of-Doom]

like 100s of diseases and conditions from the vax lol

[@experimentalcyborg]

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.

[@Kitties-of-Doom]

like everything that came from the vax! what a mystery!

[@arbuz_kawon]

> turns 5 million people into statues > refuses to elaborate > leaves

[@DaleDix]

The CIA never explains itself.

[@juliao1255]

He elaborated. Did you miss that part?

[@aidenrogers1468]

en.wikipedia.org/wiki/Encephalitis_lethargica#:~:text=The%20disease%20attacks%20the%20brain,lethargica%20spread%20around%20the%20world.

[@hollister2320]

⁠@@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

[@micwclar]

​@@hollister2320that's exactly what they WANT you to believe.

[@thecrookedtrail679]

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.

[@erikkollar66]

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.

[@clarioncall8449]

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.

[@clarioncall8449]

@@erikkollar66 Mine was from Epstein-Barr virus following a bad case of mono. Blood tests from Mayo confirmed this.

[@cocohodge2962]

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.

[@jmar8507]

@@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. :(

[@mimic1176]

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.

[@m.bird.]

Sounds like vagus nerve. Hope it improves.

[@dis8791]

I feel for her. People, including doctors, keep saying my muteness is psychosomatic despite developing it after strep and fibromyalgia.

[@pirojfmifhghek566]

Some family doctors in the US are pretty crappy at their jobs and they don't tend to give much credence to what their patients say. Often it's because they've dealt with too many hypochondriacs and morgellon's and munchausen's types in their line of work and it erodes their bedside manner as well as their professionalism. If they're not specialized in the thing, they tend to assume that their patients' claims about it are pure hyperbole. It's depressingly common for people who suffer any sort of medical issue relating to their uterus. Family doctors tend to do the absolute bare minimum when they study it in school. The stats on people with endometriosis who go ignored for years while the disease progresses is appalling. They typically get the old "take some pain medication and see" advice and then assume it was nothing when the patient doesn't go back to them immediately. But the patient rarely comes back to them because they feel completely disregarded and disrespected. It's the kind of thing that the patient has to keep pushing and pushing to get escalated until they finally see a specialist. My girlfriend's endo specialist was disgusted by the treatment she'd received from her PCP, but she wasn't exactly surprised by it either. If it's that bad for a known disease with known treatments, just think about how difficult it is to get something related to covid escalated. There's too little data on the long term effects.

[@chiefschillaxn1781]

the fatigue is from protein spikes sticking to the vein walls making it harder to pump blood, bromelain has a biological pathway to destroy the spikes you can get it as a over the counter supplement its extracted from pineapples. some of the malaise is from microclotting in the brain spicy food causes vasodilation temporarily helping relive the symptoms. nattokinase is another supplement that breaks up clots and thins the blood getting it off the spike for the bromelain to get in there and neutralize it.

[@pirojfmifhghek566]

@@chiefschillaxn1781 You got a link to a DOI of a study that backs that up? I'm curious enough to read up on it.

[@DangerAmbrose]

My great great grandfather died of this in 1921. It was thought that he contracted a virus from mosquitos that caused sleeping sickness.

[@gunslinger9171]

My great grandfather too, but I think he got it from a STD 😉

[@tatata1543]

@@janick01ifyIt’s Lyme and you don’t get that from mosquitoes.

[@tatata1543]

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.

[@Alfred-Neuman]

I don't like mosquitos, they are satanic.

[@Nilboggen]

@@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.

[@PharmDRx]

First thought was ... "Hahaha yea april fools mf!" Then, the "well shit..." kicked in

[@zay7958]

Real life dr stone shit

[@lochlanmuir2291]

For me April Fools was yesterday… 🇦🇺🇦🇺🇦🇺

[@FLPhotoCatcher]

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??

[@rigocolas]

Me too ..now​@@lochlanmuir2291

[@follantic]

666 upvotes!

[@nocomment2468]

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.

[@spvillano]

And Robin Williams in "Awakenings".

[@Spudcore]

Excellent book, very much worth reading.

[@ksharma103]

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.

[@lunacouer]

One of my favorite books ever. Highly recommend.

[@lundworks9901]

He also theorized that people experiencing spiritual rapture were having petit mal seizures due to the same brain area firing neurons.

[@CeleWolf]

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.

[@blastypowpow]

I was just referred to a rheumatologist for suspected fibromyalgia. I have allodynia on my right thigh and butt, my back right shoulder, and my left big toe. I don’t have diabetes, so it’s likely fibromyalgia. My mother has Hashimotos, may have passed it to me(I’m getting bloodwork at the end of the week to check my thyroid), and fibromyalgia seems to correlate with Hashimotos. I’m pretty scared because allodynia is progressive. You can’t stop it, you can only slow it down and treat the cause. I’ve been complaining about having allodynia for 8 years now and take pregabalin to manage the pain so I can wear pants. No doctor ever thought to investigate further. I had to push for it. Sigh.

[@clobeeb]

DAMN RIGHT!!!!! We’ve been here this whole time!!! No once bothered to help find treatment / a cause until covid

[@dis8791]

Yeah. "still bedridden, hoping for a miraculous cure... My god, I hope not" my dude we're right here already.

[@rociofernandezvillalba619]

P

[@rebeccaconlon9743]

Yeah, FM has no known cause or any clear evidence around it. Just apparent symptoms

[@linwoodnymph6113]

That the patients improved with l-dopa, but eventually regressed, reminds me of "Flowers for Algernon".

[@Preinstallable]

I remember reading that in middle school, very sad story.

[@alysononoahu8702]

Yes

[@HayTatsuko]

That story _still_ makes me incredibly sad, decades after I first read it.

[@PaulSolomon]

Beat me to it. First read that book in HS

[@1realtruthrightnow742]

Incredible book!

[@EverySecondCounts_LogOff]

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.

[@Charles-j6v]

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

[@Z5rdiko]

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.

[@fightingtosurvive6527]

May God Bless all of you and bring you comfort. ✨🌷

[@bklyn_line]

Wishing you well mate.

[@DeadGirl-oz3vl]

When he said Lenard I immediately thought of that movie. It's my favorite Robin Williams movie😊

[@trishayamada807]

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.

[@Blinkerd00d]

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.

[@trishayamada807]

@@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.

[@spvillano]

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.

[@shoveI]

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.

[@DawnDavidson]

@@shoveIso sorry to hear this. My heart goes out to you both.

[@jenssimsandotherthings1571]

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.

[@ss-nu3qf]

​@@SlingBlade933 reading comprehension bruh

[@SlingBlade933]

@@ss-nu3qf my bad, i skipped a few words lol, im always reading and i kind of skim through sometimes too fast 😅

[@pennythpmas5787]

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.❤

[@robst247]

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.

[@MJFish]

Yes, the movie is great! The book is fantastic.

[@BrianFedirko]

Yep, I thought of Robin Williams and DeNiro as he first started describing the situation Gr8 Movie/story. Love❤

[@Carolyn-qd8mj]

I love all his books too. Awakenings is a wonderful movie. Both book and movie heartbreaking.

[@robst247]

@@Carolyn-qd8mj Yes - heartbreaking.

[@bazoo513]

Speaking ot long covid and CFS, a wave to Physics Girl: get well soon, Dianna!

[@OdariArt]

I miss Dianna. She was the first person I thought about. I miss her energy. Get well soon, Physics Girl.

[@CybershamanX]

She and Long COVID popped into my mind, as well. 😞

[@DenkyManner]

@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.​

[@ricos1497]

@@jesusisunstoppable4438awesome, I'll let my father in law know that he can stop pretending to have lost his sense of smell.

[@vcuheel1464]

@@jesusisunstoppable4438Actually, there’s no such thing as Jesus.

[@rickclapp6560]

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.

[@rickclapp6560]

@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.

[@SZG65]

"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.

[@zorakj]

@@SZG65There we’re specific blood drives for people who’d had Covid.

[@SZG65]

@@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.

[@Steve-ev6vx]

​@@SZG65they were doing it during covid. People who recovered where donating plasma and blood and stuff to help the sick.

[@katymitchell8200]

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.

[@smithandpepper4308]

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.

[@chrismay2298]

I know it's shocking, but people without formal education can be VERY fluent in lots of subjects.

[@matthewzeller5026]

If you've never seen him before you should look through his other videos. He has amazing and in depth explanations on a huge variety of topics like science, history, social studies, medicine, etc.

[@norriskp]

I thought the same thing; I'm a PharmD & was impressed with the depth of his knowledge and also the way the terms just flow from him effortlessly. Not typical of non-medically educated folks.

[@biazacha]

Teaching on itself is a skill; lots of people have the knowledge and no good way to share it, others have it on them so all they need is a solid research to build a script.

[@argenisguareno864]

0:01 that’s by my house what the hell💀

[@cynthiaholland13]

The hospital?

[@-JBYT-]

get doxed

[@slice-o-life]

Are you ok!?? How’s the coma going?

[@vogelvrouw]

That's gotta be a wild way to start a video for you

[@Regu269]

You still live in New York? Shame

[@familyfulkerson3257]

Robin williams movie, awakenings. Great movie.

[@milesteg8183]

Hard watch to this day. Beautifully tragic.

[@familyfulkerson3257]

@@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.

[@joshschleininger8888]

Coincidentally I Totally watched this on Saturday it’s on Hulu 😂

[@davidmacphee3549]

@@joshschleininger8888 And Disney +

[@paulmichaelfreedman8334]

And don't forget Bob de Niro as the patient!

[@apricake]

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.

[@Non-religiou]

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.

[@Non-religiou]

I doubt strep would cause all that, next they'll say it's something else, they said it before.

[@oneminuteofmyday]

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.

[@Sadkoi]

Tourette’s like symptoms? …can it straight up cause Tourette’s syndrome?

[@majorzipf8947]

I’ve had a few really bad cases of strep over the years and I’m so grateful that I recovered fully

[@lisastevens682]

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!!!

[@debanydoombringer1385]

The treatment is the same as today. Prednisone. I have it. There's two steroids you can take. Prednisone lasts for 8 hours. The other one lasts for a few hours, and it's staggered doses throughout the day to mimic the natural rhythm. If she was on a high dose, which is likely because they weren't able to track the natural production of cortisol like they can today, the side effects are being almost manic. Lots of energy, sleeplessness, increased appetite. It destroys your bones at those doses though. Edit: A healthy cortisol level is between 15 and 20 after you wake up. It slowly decreases throughout the day to zero when you sleep. 5mg of prednisone converts in the body to a level of 20 cortisol. A high dose is 15 MG or more. That's given to Lupus patients to treat flares. At those doses it suppresses the immune system. I also have Lupus.

[@leeselset5751]

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.

[@jacopomorganti404]

Me too!

[@tonydagostino6158]

Diana's story is so sad. Her husband and care giver needs support too

[@mrnice4434]

@@tonydagostino6158 yeah it's amazing that he sticks with her and helps her so much

[@_QA_]

Miss her too, still follow, hoping she's getting better.

[@rodchallis8031]

My thoughts went to Diana too.

[@heatherrhodge2588]

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.

[@empathopinion6251]

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.

[@ununhexium]

@@billb.950 what? what is wrong with you?

[@jani7166]

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.

[@Wesenskern]

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. ❤

[@cathymadsen2930]

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.

[@ProgressiveRoxx]

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.

[@matthewdove5528]

Referencing "The Sandman" gets your comment a thumbs up, my friend! Have A Nice Day!

[@davidmacphee3549]

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)!

[@GhostRydr1172]

​@@davidmacphee3549that version of the Sandman was created by writer Neil Gaiman and artist Sam Kieth.

[@arthas640]

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

[@GhostRydr1172]

@@arthas640 it was pretty good and faithful to the source material. Production of S2 got delayed because of the strikes last year.

[@couchesandpotatos]

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.

[@annekabrimhall1059]

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.

[@JaneAustenAteMyCat]

I've had it since 14. I've not really noticed any difference since the pandemic. Not that I care any more.

[@annekabrimhall1059]

I’m sorry, just keep swimming, swimming, swimming! My life motto.

[@ulbuilder]

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.

[@empathopinion6251]

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.

[@axollot]

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

[@dougms9790]

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.

[@alexiiconner]

what was life like back then? sometimes i wish i experienced more no-internet times

[@ericf7063]

@@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.

[@graysonmorrow7886]

@@ericf7063thank you for sharing, a pleasure to read

[@queenofdahouse1591]

I was born in 1959

[@frankmccann29]

​@@alexiiconnerwe had to know what we were doing to screw it up this bad.

[@orange-micro-fiber9740]

Shout out to Physics Girl, Diana, still suffering Long Covid.

[@shoveI]

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.

[@TheVerendus]

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.

[@ephemera2]

Somebody tell her to wear nicotine patch for 6-7 and, it'll go away

[@jennifermcmillan9518]

I LOVE HER!

[@JerseyMiller]

Everyone I know who got long covid took the jab

[@anotheryoutubechannel4809]

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!

[@kitlee172]

Sounds like you could be describing the 80’s through now. 😮

[@anotheryoutubechannel4809]

@truegemuesehe was not in it. Just that he lived thru it.

[@anotheryoutubechannel4809]

@truegemuese gotcha, yea. Point just being all the black swan events happening one after the other. Living during the early days of the cold war was very stressful as well I think in ways that we can't really imagine. But we have our own problems!

[@pjsisseck915]

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...

[@etsprout]

That is absolutely fascinating. I’m sorry about your fibromyalgia though! 😢

[@anna9072]

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.

[@titaniusanglesmith9690]

umm how did she acquire dopamine lmao

[@Farasha210]

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?

[@Farasha210]

@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!

[@jakeaurod]

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.

[@rivitraven]

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.

[@paavobergmann4920]

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.

[@Moonstone-Redux]

Yes, there are encephalitis viruses that are transmitted by mosquitoes. Over in South East Asia there is the Japanese Encephalitis virus which fortunately there now is a vaccine for. Apparently it also helps reduce the severity of high fevers as well.

[@InertiaCreeps]

Dianna Coburn / @PhysicsGirl really comes to mind with this video. She had COVID, seemed to recover just fine and then randomly hasn’t been able to get out of bed for about six months now. It’s absolutely heartbreaking to see. I really really really hope she somehow gets better, but watching this video I have even less hope that science will find a way to help her any time soon.

[@dilsiam]

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 ❤❤❤

[@sittingonariver]

Your rest in power message for your Mom truly touched my heart. It is exemplary for describing my Mom as well. Thank you! ❤

[@peacekeeper479]

Much respect for your mom

[@sweettaterpie7009]

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.

[@mrstiffanyalexandrashain4489]

⁠@@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 😊❤😊

[@bobmarshall3700]

Your response is nonsensical..............

[@jaredbaker1183]

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.

[@Db8it]

Yes to all of this. Thank you!

[@sciencerox9102]

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.

[@sisterthesister4870]

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.

[@TF2CrunchyFrog]

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...

[@brobbeh]

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.

[@familyfulkerson3257]

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.

[@ryantwombly720]

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.

[@SuperMrHiggins]

Just posting to bump the thread. Best wishes.

[@touka32able]

Have you considered looking into the carnivore diet? It can help with neurological issues

[@chrish3175]

I hope someone sees this who can help you. Bump

[@BallstinkBaron]

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

[@jonahmoore2941]

I am struck by the compassion in your delivery. I immediately subscribed.

[@KY_CPA]

Awakenings was SUCH a good movie! RIP Robin Williams

[@sleavsloth]

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.

[@Dark_Harmony]

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!

[@mysmirandam.6618]

I have fibro as well. I am un so much pain

[@coronalight77]

Try MS.

[@sofri4451]

That's what these vid's are for. Connect the dots.

[@charlottecoolik9872]

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

[@NorthernKitty]

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.

[@jstokes]

I had a similar experience.

[@WhosThatPaddy]

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

[@deborahaumiller7391]

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 😄😄😄😄👍🙏✝️❤️

[@SmogginMog]

Johnson and Johnson or Moderna?

[@george1982ok]

@@SmogginMogor Pfizer ?

[@TheSleepSteward]

It's so infuriating still seeing people downplay COVID or straight up deny it. It's like... Go ahead and say that to the face of an ICU nurse when just everywhere, all over the world, healthcare systems were being barraged way more than normal with just COVID patients. And then everyone with long covid, go ahead and say it to their face. I cannot imagine anyone but a monster say such a thing to someone's face. That or it's just ignorance that is so off the charts that it borderlines malice.

[@lacyclairewhitten4991]

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.

[@empathopinion6251]

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!

[@deenapalazzo486]

I have narcolepsy as well and was wondering the same thing. If I'm not mistaken, it was the vaccines for the swine flu that were actually causing narcolepsy. Narcolepsy has to do with the lack of histamines, which has to do with wakefulness. It all has to do with the same things, I just wonder if anyone has ever looked in to the correlations.

[@robw2379]

"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.

[@Reiman33]

Federal agent.

[@lesliehyde]

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.

[@freya-the-wolf]

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.

[@woy8]

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.

[@usainengland]

@@woy8​​⁠​​⁠The 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.

[@Paleo_Nico]

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...

[@flagmichael]

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.

[@Glipsnarp]

Did she get vaccinated?

[@jjets8775]

Dr Pierre Kory says most long covid is actually long covid vax

[@Paleo_Nico]

@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...

[@Glipsnarp]

@@Paleo_Nico 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.

[@wanyekest6969]

fallout ah disease

[@SandyDiVa]

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.

[@dogsaregods6748]

I really hope you recover ❤ ( have you tried Taurine or PEA supplements ?)

[@TheLittlestViking]

@@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?"

[@empathopinion6251]

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.

[@aazhie]

​@@dogsaregods6748having a disability doesn't mean people can't parrot ability bullshit

[@aazhie]

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

[@Enn-]

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!

[@PunmasterSTP]

I had no idea, or else had completely forgotten, that encephalitis lethargica even existed. This video was sad, but also mind-blowing.

[@milesteg8183]

“Alright. Had a great Easter. Family. Good food. Awesome. Let’s get this week going. Oh, cool. Joe has a new video. Let’s go!!!” (Watches video) “Life is meaningless and death lurks within every shadow. My continued existence remains an unsolvable mystery. God is dead.”

[@joey.99]

God doesn't exist. Jesus christ didn't resurrect. It's all a delusion. I just celebrate Easter for food and family

[@frankdrake902]

Those are the vibes we are here for though

[@_Fernando.]

Now go watch some kurzgesagt for a dash of existential dread

[@dis8791]

It's 'just' a disease. They happen, they always have, presumably they always will.

[@Golden_Ace]

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.

[@joescott]

Glad I'm not the only person I crack up. :)

[@chuckjones8459]

That mortal sin is called " Usary".

[@becklyn3]

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.

[@kevmasengale6903]

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.

[@Grimaldus1701]

same here, starred the great Robin Williams in a completely serious role, good movie if anyone hasn't seen it!

[@nazfrde]

Technically it is correct to call dopamine a hormone, but it's probably more useful for the purposes of this video to refer to it as a neurotransmitter.

[@guylewis477]

I ran into you a while back. A nice person

[@davidmacphee3549]

He feels like a good friend. I always enjoyed his 'company'

[@BlazeFox89]

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

[@goingslowlynowhere]

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 ^_^

[@GoBlueGirl78]

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. ❤

[@laa4438]

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.

[@goingslowlynowhere]

@@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.

[@spvillano]

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!

[@revelle8605]

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.

[@ChristyH-B]

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!

[@qynoi42]

​@@ChristyH-B As a fibromyalgia sufferer myself, I wish you luck!

[@zenfrodo]

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??

[@patrickherke8947]

​@@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.

[@patrickherke8947]

​@@ChristyH-B "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

[@floydthejust]

Every technology is developed on a weapons first basis.

[@nightfall1249]

No it's not

[@maximusmidnight2591]

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.

[@youtubecensors5419]

That's also a very common side effect of the injections we were given during Covid. Hopefully it improves for you! 🙏🏿

[@yotsubafanfan]

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. 😭

[@wagerword]

I'm still looking for answers, but I have similar symptoms.

[@Wolfie54545]

What is POTS?

[@FaithOriginalisme]

@@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

[@TheLittlestViking]

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.

[@JoeRogansForehead]

Covid toes😂 This country has lost its mind since Covid . The media really broke y’all brains

[@mgjk]

@@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.

[@ivytarablair]

CFS or other post-viral autoimmune disease and THEN getting LC - right there with you. Horrendous

[@bite-sizedshorts9635]

Did you get any shots? These problems may be side effects.

[@armageddon1403]

And you still dont understand its the fake vacccine that harms you?

[@YasuTaniina]

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.

[@AshleySpeaks4U]

I got sick in high school with human parvo-dubbed harmless-and was never the same. My junior high crush got Mono and was never the same. He was diagnosed with CFS and I was diagnosed with FMS. Turns out, both viruses are top offenders for ruining lives.

[@cynvision]

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.

[@louisechantellejohns]

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.

[@grahamstewart615]

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 of it 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.

[@Fayanora]

I think the weirdest long covid symptom is that some people who lose their sense of smell and/or taste then get it back, but it comes back Wrong. That is, some wires got crossed and now things don't taste the same. One person I know of was talking about how most of the foods they used to love now taste like garbage or rotting meat, so they had to totally overhaul their diet to try to find foods they could tolerate eating. And I think they ended up with a diet that is super bland, like "white bread with no seasonings" bland. IIRC, I think they had to avoid alliums, most seasonings, and most proteins and oils, to the point where even butter tasted rancid to them.

[@silvervial]

In December of 2017, I came down with the worst flu I have ever had. I was sicker than I have ever been. I slept most of the time. When I finally started to feel better, I had totally lost my senses of taste and smell. They were totally gone for nearly six months. And when they came back, they came back wrong. It has taken until this year for my taste and smell to function even close to they way they used to. My husband insists I had COVID, but it was three years BEFORE the pandemic....but everything I experienced during and after that 2017 illness sounds so much like it that I wonder...

[@davidroosa4561]

@@silvervial that happened to me in 2007

[@CosmologicalCanvas]

Kinda makes sense though. We constantly replenish the chemoreceptors for taste and smell, so after Covid wipes them out, we eventually may rebuild them. Them coming back 'wrong' might be different populations of the receptors than before or the brain just going WTF.

[@dis8791]

I'm now wondering... My mother had COVID at one point, and for a while now she regulary insists that the house smells like cat urine, while I don't notice it at all. I thought that was just a me problem(we do have cats and one of them has problems using the litterbox), but maybe it's actually her sense of smell that's messed up?

[@easternflower6476]

My grandfathers uncle, who was beloved by everyone in our family, got this disease when he was only 25. He passed away after being in a statue like state for 4 years. My grandpa and the rest of the family would spend all day at the hospital with him. They took it in shifts, so he was never without a family member for more than a few hours. My grandpa told us how they’d play music for him, and sometimes when they would fly kites, they’d wrap the string around his hand so he could feel like he was doing something :( Rest in peace, uncle George, you were so loved and are remembered ❤️

[@nancycowell-miller4321]

I've got a close friend dealing with the neurological aspects of long covid (not the same thing, I know). Hey - how about doing a deeper dive on that? Or does that dump you into de-monetization purgatory? I know nothing's really been "solved" yet (although we've come a long way from refrigerator trucks parked outside hospitals). Seems like some of us might find that interesting. Just a thought!

[@larrymccandless8723]

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???

[@andrasbiro3007]

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.

[@jayceewedmak9524]

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.

[@User31129]

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.

[@TheLittlestViking]

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.

[@sokjeong-ho7033]

I know of someone else who was born in 1889. He died in the mid 40's though.

[@raindancer6111]

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.

[@biazacha]

My mom also had rheumatic fever as a child and at the time antibiotics were very new, treated like a miracle drug and used for anything… her memories of that period are grim.

[@moondogaudiojones1146]

Very interesting. I have a couple of friends who have long Covid. They talk about the exhaustion and brain fog. It seems to come in waves. Not catatonic but definite lethargy. I hope more gets figured out about long Covid.

[@1GoodWoman]

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.

[@BrandonFox720]

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.

[@johnnybravo9096]

Did you get vaccinated?

[@rosetealatte9282]

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.

[@chasethecat3839]

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

[@MadameCirce]

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.

[@mangolassi_.]

11:30 In the Wikipedia article on the book Awakenings, there's a Sacks quote from 1982 that says that "there has been a significant number of patients who, following the vicissitudes of their first years on L-DOPA, came to do - and still do - extremely well. Such patients have undergone an enduring awakening, and enjoy possibilities of life which had been impossible, unthinkable, before the coming of L-DOPA."

[@Filboid2000]

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?

[@cartti]

Was left wondering this as well.

[@tinkerstrade3553]

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.

[@joescott]

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.

[@Alfred-Neuman]

OK but was it an experience from the CIA or even the aliens? Or maybe some aliens working for the CIA??

[@christophergaus3996]

​@@joescottThank you for this addition 🖖

[@joachimgoethe7864]

Who paid Leonard's hospital bill? 40 years?

[@agresticumbra]

A number of hospitals operated a bit differently in the past.

[@joachimgoethe7864]

@@agresticumbra Leonard we be on the streets in about a week if he were alive today.

[@cynhanrahan4012]

Pre-Reagan, there were long term health care facilities available to all. He did away with them.

[@NickJ22]

It's america he went bankrupt

[@RafaelRodrigues-rx9ry]

Damn communists! 😂​@@cynhanrahan4012

[@vasimir3183]

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

[@piccalillipit9211]

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.

[@Jesingtoan]

Just wondering did y'all get vaxed​@@piccalillipit9211

[@freya-the-wolf]

​@@piccalillipit9211that is a perfect description of how I feel. ME/CFS from a mono infection in January 2020 here.

[@piccalillipit9211]

@@freya-the-wolfIm 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.

[@angelachouinard4581]

@@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.

[@erik_not4prophet_morano172]

No long covid here, but I got Lyme disease over 10 years ago, got down to 105 lbs from 170 and had to do 3 picc line treatments over like 6 or 9 months. Since then I have never been the same. Some docs say chronic lyme isn't a thing... Well something still isn't right by me even if I am no longer lyme positive. Im still more tired, weaker, and have these wonderful joint aches....Something never got right after lyme went dormant.

[@olive_99]

I have a bought of chronic fatigue syndrome after my Lyme infection. Although you may not actively have the bacteria in your body anymore I absolutely believe it can have semi permanent and permanent effects on some people

[@marccheban194]

This is a superbly constructed video. Clear, pithy, and full of essential information. Congratulations on this great effort!

[@ImVeryOriginal]

It was obviously caused by the summoning and imprisonment of Morpheus, Prince of Dreams, by the warlock Roderick Burgess in 1916, which fractured the Dreamworld and affected all dreamers across Creation. But seriously, it's a terrifying disease and Long Covid is pretty freaky on its own. Over two years after infection, I still have significant verbal memory issues and my language abilities have dropped down a level in both my native and secondary languages. It sucks but I got off easy compared to some others. I remember having similar, although short-lived, symptoms after taking the vaccine, which would probably fit with the autoimmune neurological damage theory.

[@johannageisel5390]

There is the post-vaccination syndrome which has a lot in common with Long Covid. And I recently saw a documentary about a Long Covid sufferer who first got the vaccine that already led to some symptoms and then got the infection which made the condition fully break out. So, if the vaccine already triggers this, it's likely this is immune-system related. It really sucks that the people who are vulnerable to this condition would probably get it no matter what. They vaccine does not protect them and even harm them, but not taking the vaccine would leave them even more open to getting the infection. The only way to protect themselves would be to completely isolate and always mask up, but that is hardly practicable. And you also don't know if you are susceptible to this condition before you get it (at least in a weak version). A really perfideous disease!

[@larrywoolford8978]

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.

[@ritadyer9295]

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!

[@tuttt99]

Robert DeNiro and Robin Williams did an amazing job of portraying this in "Awakenings".

[@michaelkeller5555]

Long covid is actually shockingly similar to chronic fatigue syndrome. And as someone with cfs...... it's absolutely miserable.

[@catherinebryant1952]

I have long covid. Was a RN, unable to work now. As I experience long covid I was wondering about a connection to the people in Awakenings. I have joking said to my friends that I feel like a Zombie, maybe this is those zombie movies coming true in real life. One of my Dr. said I have Myalgic encephalomyelitis, from COVID. Devistating to me as I was active and now I am housebound and my mental capacity is bad.

[@artpsych71]

The EVB (Epstein-Barr Virus) a. k. a. Mononucleosis remains dormant and is thought to perhaps be one of the causes of chronic fatigue syndrome. Some researchers also purport EVB as a possible cause of fibromyalgia.

[@wiseoldfool]

I have fibromyalgia. EVB and Ross River virus were ruled out. I think it was caused by statins.

[@Cocoanutty0]

My dad had a bunch of scary health problems about two years ago. Chest pain, included. His D-Dimer was elevated, which is a sign of a clot, but there wasn’t one. Months later, the D-Dimer was still extremely high, but no visible clots. Took one doctor to finally mention micro-clots for them to realize he had long COVID. He still had horrible burning and itching in his legs and chest pain, and other things I know he isn’t telling me about. I’m terrified of long covid, especially as an immunocompromised person. I’ve already dealt with CFS symptoms most of my life, and now wonder if I could have long swine flu. It’s the not knowing that scared me most-what is going on inside our bodies?

[@lilywhite6933]

Awakenings was one of my favorite things I learned about from my high school psych class.

[@flaming_bentley]

Excellent movie. I watched it in nursing school

[@466rudy6]

In med school we watched Patch Adams. No. We studied very hard.

[@waynet68]

I recall watching a NOVA documentary in the 1980s that had a group of people get the same sort of disease after taking synthetic heroin.

[@cynthiana8328]

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.

[@PrplRobin]

8:45 Oh my gosh, Dr. Oliver looks like Robert Williams t.t RIP. For those who don't know, Robert Williams starred in a movie about Dr. Oliver curing these patients temporarily.

[@piccalillipit9211]

*THERE ARE 65 MILLION PEOPLE IN THE WORLD* with Long Covid who are NOT Physics Girl - just wanted to point that out. As sickening as it is for her - she is far from the only one

[@sunshine3914]

?

[@piccalillipit9211]

@@sunshine3914- When I arrived all the comments were about Physics Girl who has Long covid - which is terrible - but she is not the only one.

[@shoveI]

While I am NOT glad that she or anyone else has it, I am appreciative that she has shared the situation on her platform to make it visible to more people.

[@Astronomater]

And your point is?

[@bh-zj4yt]

Yeah. Everyone knows that But please enjoy your look at me time

[@nightstrike710]

Hey, I watched this video on Nebula last week. It was in the background so I didn't see the photo of the journal. And I have to say, that translation at 3:37 is helpful for us Germans in the audience as well 😂 I rewatched that part at least five times and even knowing what you wanted to say, I still couldn't understand what you actually said 😂 At 4:23, you are much closer to the correct pronunciation, though! Sorry, just had to let know you. Apart from that it's a great video! 😊

[@Tulpen23]

I thought the same thing 😂

[@Nylak-Otter]

My mother died of long covid. Her previous excellent cardiovascular health tanked quickly after recovery, and she also had fatique and absentmindedness. She died of a series of heart attacks; she survived the first two which put her in a chest device which she had to wear 24/7, but then died of a final heart attack at home when she briefly removed it to shower. She was 60.

[@Chamindo7]

God rest her soul. 60 is young! Sounds like she was not able to get the safe and very effective Pfizer, Moderna or Astra-zeneca vaccines.

[@shaq74]

And that’s how you get 2+ million “Covid” deaths.

[@Nylak-Otter]

​@@Chamindo7 Actually, she was fully vaccinated with the Pfizer line. I'm a transplant recipient so I have a compromised immune system, and she didn't want to risk getting it and passing it on to me. Ironically, I never got the virus, despite being in and out of the hospital throughout the pandemic. 😅 She was just always super social, so she figured with a mask and vaccinations she was safe to maintain her daily interactions outside the home, and turned out to be wrong. 🤷‍♀️

[@nansi113]

@@Chamindo7I’m pretty sure the research has shown long covid is more common in vaccinated individuals

[@empathopinion6251]

Very sorry to hear to hear of her struggle.

[@petermarinatos9475]

everyone I know who has had long covid has has many covid vaccines. I'm not saying that is universal, but I'm curious to know if that has been other people's experience as well.

[@Just-MACCHEESE]

My friend recently realized she had long Covid after she was having complications months after she initially got infected. she was hospitalized after she got a cold shortly after she realized. She never got a single Covid vaccine, so I’m assuming you’re just around a lot of people who got vaccinated. Maybe your friends are older or immune compromised or something. If they’re really stressed, their immune system might be totally shot too.

[@coolbreeze5683]

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.

[@Bunnyliver52]

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.

[@empathopinion6251]

@@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."

[@juliao1255]

In the UK and Australia CFS and Fibromyalgia are called "Post Viral Fatigue Syndrome". I am disabled for 22 + yrs now with both (without having to appeal with SS - almost impossible, but that's how bad it is!) I have been encouraged by newer information coming out about Fibro/CFS. It seems like it was just being ignored by medical science for a long time. I wish they would rename the "brain fog" that gets talked about. It's not foggy so much as it's like I can't "connect-the-dots". It is hard to describe, but it's like the neurons aren't connecting. My theory is random nerve firing that interferes with actual thought nerves firing. Anyway, fascinating episode.

[@katekendall6574]

Fibromyalgia and cfs are 2 different conditions cfs is Myalgic encephalomyelitis. Although both go hand in hand for alot of people only m.e/cfs is considered a post viral illness where Fibromyalgia is thought to be triggered by a high stress life event.

[@katekendall6574]

Also although one cause is a post viral fatigue people can get post viral fatigue and recover and not necessarily go on to develop m.e/cfs

[@thomashenden71]

Awakenings is the movie about this. With Robin Williams amd Robert de Niro.

[@katekendall6574]

Awakenings is not about m.e/cfs it's about EL the subject of joes vid here.

[@empathopinion6251]

Brain fog is a whole constellation of neurological symptoms and I agree "fog" barely begins to describe it. I'm not able to read much scientific literature - too foggy. So my comments are simplistic but here goes: There's an MRI study that shows the ME brain is being affected by chemicals that are found in an inflammatory response. Also, there is thought that the blood-brain barrier is compromised so toxins are flooding it. As you say, maybe random nerve firing? Wish they'd study it! Whatever it is, I'm aware that anyone I explain my symptoms to will respond with something like, "Oh yeah, I forget things too." I used to be patient, but after decades I now go into instant rage - as if their response triggers PTSD. (It's an ME symptom due to the nervous system unbalance.) It's frustrating when people can't imagine something beyond their own experience. I can barely speak a full sentence because the word-finding is excruciating. It requires so much focus that I can't talk unless my eyes are closed so I can focus all my energy on putting words together. I can't think if there is noise of any kind. That's just word-finding. Now add the Executive Functioning problems (inability to assess time or to plan), the forgetfulness, the inability to focus, the overwhelm.... I could type a paragraph. "Connecting the dots" is a good description too but not all encompassing. Wish there was a clearer phrase! I heard an ME scientist's wife say something like, "The brain is feeding on itself" which really struck me. It's not getting the energy it needs so it uses the brain tissue as energy. (Please, remember I've got terrible fog so I"m doing my best here to remember how she said it without the correct scientific wording.) And still the people I meet tell me they're forgetful just like me. It's soul-crushing to struggle so badly and have people undermine the struggle with such clear lack of any awareness. We need better descriptions!

[@notimpressed100]

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

[@deborahaumiller7391]

God Bless you and know that Jesus is always ready to listen to you.❤🙏❤️

[@tinalaursen8993]

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. 😮😔

[@evesloan7895]

Try adding iodine to your diet. Many videos on this.

[@jmar8507]

@@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.

[@dis8791]

​@@evesloan7895goddamn. They've had this condition for 56 years and you still dare to give unasked advice. The balls on you are almost impressive

[@TheRubinator13]

11:23 I FELT that at my core! 😆🤣 I'm only 28, but I feel like I've been asleep through so many of the world's changes...It's hard to recognize anything anymore sometimes 😵‍💫😂

[@luv2dancesalsa465]

Look out, Matthew McConaughey.

[@judithgockel1001]

Cast your mind back to the late ‘80’s, and note there are still millions with CFS/ME/FMS/POTS who sunk below the awareness of ‘the world’, who went in days or hours, from normalcy to slugs who are still undiagnosed, untreated, or who do not break the surface of society’s consciousness. 35 years and counting, here.

[@rebeccadoty-evans4499]

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.

[@em23]

My only regret... is that I have boneitis!

[@bj_]

I was literally just thinking "that guy looks a lot like Robin Williams, would be cool if he played him in a movie"

[@nineteenfortyeight6762]

You gotta see the movie, he's Wonderful in it