How I got Myalgic Encephalomyelitis (ME CFS)

Myalgic Encephalomyelitis (ME) is one of the most disabling conditions on earth. It affects 1/250 humans. Most ME patients are women (75%).
This is a video about the moment I knew I got sick with Myalgic encephalomyelitis/chronic fatigue syndrome. I look forward to sharing so much more about living with MECFS.
The term CFS / Chronic Fatigue Syndrome is unhelpful, and I generally refer to this condition as ME.
I am sadly aware that many patients with Long Covid are joining the ME community.
MEpedia entry on ME - me-pedia.org/wiki/Myalgic_enc...
MEpedia entry on cognitive dysfunction in ME - me-pedia.org/wiki/Cognitive_d...
This video was the first episode of VladsMEdiary shared on Twitter in April 2020.
Say hello on Twitter, where my Twitter diary on living with Myalgic Encephalomyelitis is up to 150 episodes - / vladvexler
Say hello on Insta - / vladvexler

[@VladVexlerME]

Healthful wishes to everybody at this time!

[@louisfiorucci4904]

@VladvexlerME I just want you to know, I have narcolepsy, I know what you’re going through.

[@allisonmarlow184]

I can't believe I just heard you verbalize what happened to me too! I was a high powered lawyer and all of a sudden, I... went... stupid. The legal document on my computer screen ...made no sense ...I could not read it nor recognize letters. I immediately called my husband to basically rescue me... because I became terrified... knowing that I couldn't even think my way out of a paper bag! Thank God the cordless landline phone had redial so I could reach him at work. I couldn't even put words together to speak. That was in 1998. It took me over 15 years to read again. I can't believe someone else knows what I've gone through, and what I still go through. I'm so sorry it happened to you too. (I often wonder if a serious injury I sustained 2 years earlier was the root.) Almost 25 years of crippling pain for me. It destroyed my career. I'm content for the most part in my own little altered world now. Thank you for sharing. I haven't discussed this with family or friends. Just you, for the first time. I feel less alone. Thank you so much.🙂

[@VladVexlerME]

I am so so sorry. Sending gentle wishes to your body. These stories are so similar. It should be a vast public scandal how society and medical systems handled this. That scandal will come.

[@PandemoniumMeltDown]

😘

[@AndreasDelleske]

Wow. I am looking into this for the first time and I am speechless. Society should really pour in much more resources for science and help, also because we seem to have no clue, neither about the causes nor about your level of suffering. Why is there so little empathy? So far, I "only" know a remote friend that had a aneurism or something at 30, half paralysed for 10 years, now getting better. It hits me that he clearly recognizes me, even has a happy expression when we meet, listens and seems to understand but all he can say is one german word for yes or shake his head / body for no. He is able to work in bike repair now. This haunts me in a way.. I felt overwhelmed when I tried to imagine or feel his perspective. I have had depression more than once that also people don't get but this is different. Fortunately I found a way to just watch what is. In a way I guess I lost all unnecessary concepts, beliefs and identifications. This and running got me through so far.

[@SlpBeauty333]

Alison, I'm so sorry that you have to go through this. I have a different chronic illness and a cousin who is possibly Patient Zero for CFS. It wrecked that side of my family because someone couldn't accept that my cousin was really sick and not showing up for family events because she was sick, not because she was avoiding or insulting people. I've been on the internet for a damn long time for someone in Gen X and one thing that's sort of universal is that people often feel more comfortable sharing their deep, dark secrets online. The anonymity is actually helpful sometimes. There's an old saying: "In person, you learn a person from the outside in. Online, you learn people inside out". Which is so true if you think about it. Online you aren't judging the person's appearance or their style or their car or any of the outward signs about them. You learn what they share about themselves which is usually something about their feelings and emotions. What they choose to share is also telling because they're sharing what is really important to them. On my knitting group on Ravelry, we actually have a thread called, "The Thing You Just Can't Say Out Loud" . It was started because one woman was having a hard time with her kids and she couldn't say she hated her kids but that's how she felt in that moment. It's a thread where you can't give advice, you can't message the person and you can't reply. All you can do is hit the buttons that are there and we have way more than just thumbs up or down! We have "educational, interesting, agree, disagree, and love". So you'll go through the thread and just hit the "love button" all the way down the page just to be sure people know you care about them. I believe that thread is like 13-14 years old now and it's one of the best things on the whole internet! Take care of yourself and know that people care about you. Lots of love from NYC ❤️

[@SlpBeauty333]

@Soviet Technocracy Not that I know of, they had moved away and became distant before she got sick. I'm amazed that the relatives near Centralia PA aren't sicker. Most of them lived long lives, except for a few.

[@TiredTimelord]

This. I lost my job as an accountant. I stopped being able to comprehend the formulas and numbers and process. Wishing you the best. If we are to get better only way is one day at a time.

[@VladVexlerME]

Wishing you health. I think for a collective recovery - not just individuals getting better - we need money money money and smart research. I believe this will come more and more but slowly.

[@SilverSurferCoins]

I lost my job as well as a software engineer. I could no longer understand how to design the complex algorithms required to do my job. It's totally changed my life.

[@asgerms]

@@SilverSurferCoins Software engineer here too, understand the complexity of it. I lost the ability to understand my own designs due to stressful circumstances. Happily doing my work, then simply out of my cognitive reach. Regained the ability after months of complete letting-go and relaxation. Still recovering, not pushing it. Scary stuff, but mine was definitely stress. Hope you get past your issues. All the best.

[@flagmichael]

@@VladVexlerME For research, take a look at PolyBio Research Foundation kzbin.info/door/0OFVvET5SnVzfKWHAwebRA I agree, though... we need a _lot_ more research.

[@cspace1234nz]

Whenever I go and see my accountant I end up losing all concentration and getting a headache, does that count ?

[@TheCriticalSigma]

Not only do you have an amazing mind, but you are also a beautiful, compassionate human being, Vlad. Keep shining!

[@rudyardkipling5175]

I have had ME since 1989. Part of the long time in between in Oxford. Losing one's mind, even a bit of it, is infinitely painful.

[@VladVexlerME]

Hi. Sending easeful healthful wishes. So sorry it has been that many years for you.

[@avnostlga]

Not ME, but MS. I had my moment in surgery. I was a surgical technician at a veterinary hospital. Mid-surgery my mind went black. I stood frozen unable to comprehend where I was and what I was supposed to be doing. I didn't even recognize the instruments in the tray in front of me. Instruments I had organized and set up for the operation a half hour before. The second tech stepped in and the surgeon threw me out. It was another two years before my diagnosis, but I will always remember that day. Stay strong my brother.

[@homeland1128]

Friendly reminder that it is NOT your fault you already are amazing for helping all the animals in your care

[@avnostlga]

@@homeland1128 Absolutely. I and the rest of my team were dedicated to no end. I am at peace with what life has brought me; and thankful every day for what I can still do.

[@homeland1128]

@@avnostlga cheers mate, happy for you

[@allisonandrews4719]

Every time someone with a misunderstood or stigmatized neurological condition talks publicly about his/her/their condition it helps everyone. I was misdiagnosed with CFS on the basis of fatigue severity in 2018; fortunately I was a clinician so I knew I was not getting good advice. Still, it’s taken in total a decade to get a real (other neuro) diagnosis, manage symptoms, find new work, etc. Used to be an academic, too. But I can think now!! Most of the time I can read without effort. And I get to wear a really badass pair of orange-tinted glasses practically 24/7. Thanks for being one more person proving to the world I wasn’t making up my symptoms.

[@royalukas8144]

I experienced a complete loss of who I am, where I lived and what I was doing all while picking up some dry cleaning. I walked out onto the curb of the sidewalk and sat down. I recovered in a couple of hours thankfully, but I’ll never forget that feeling of being completely lost. Truly a frightening experience.

[@Thomas-mk9cu]

I had the same experience when I had a case of serious Meningitis. I tried to speak but instead of words I was talking gibberish.Thankfully I recovered.

[@VladVexlerME]

So good you recovered

[@thefarmerswifeknits6190]

So sorry this happened to you. I am 18 months into Long Covid and this really resonates with me because the effects are similar and the fatigue is soul crushing.

[@rocketman2010]

How r u now plzz reply

[@girlfriday1299]

I hope you are much better now. Wishing you good health and wellbeing. God bless!

[@77thTrombone]

Take deep breaths. Really deep. You don't need too hold it long. Do this a couple times a day. It's not a long & involved thing, like running, swimming, yoga. Nor is it _m_ sets of _n_ reps like weightlifting. It's just a couple deep breaths every day to keep the lungs "stretched out." There is no pain or other indication before, during our after, but I have found it to be transformational with near immediate benefits.

[@SlpBeauty333]

I hope you are doing much better now. In case you aren't, I just found out from my rheumatologist that they're trying Xeljanz for long COVID. It's a JAK inhibitor and I'm taking it for autoimmune arthritis but this off label use is in the works.

[@77thTrombone]

@@SlpBeauty333 the following is worth every red (or blue) cent you paid for it: avoid sugar, corn, dairy. Won't be a cure, but may reduce symptoms. Try few days off these things, then on, etc a few times. If you notice a difference, then it's worth thinking about. Won't replace drugs & doctors, but may reduce annoying symptoms. Backstory: My wife is deep into alternative therapies (she's also deep in regular therapies, but I digress.) Following occurred: Her: Me: (went out for frozen yogurt occasionally. After ignoring for a long time, finally recognized and confirmed the _very_ strong correlation with achy joints on the following day. Didn't mention to wife, so as to avoid encouraging the harping. Similar observations with milk, sadly) Her: Everyone's mileage varies. best! p.s. avocado toast _will_ cure everything! 😜

[@SeamusDunmaggotin]

My daughters grandfather suffered with this, he's an extremely intelligent, and talented man, he had the best library ever, I couldn't read most of it, he was a sculptor and had lots of toys, and let me play with them, I ended up studying sculpture , he changed my life, while suffering, in silence. You remind me of my mentor, oh,OH!

[@omygod9062]

A similar occurrence to mine at Oxford almost twenty years before you. I was an undergraduate and had been feeling increasingly tired for months and one day in a library I felt as if my head had exploded and I felt something fundamental had happened.After that I couldn’t read, put a sentence together or find my way home. Unfortunately no one would help or listen and I experienced a level of verbal and even physical abuse. After this was years of recovery and help seeking. Soon I realised I was on my own and no one would listen . This illness ruins lives.

[@CS-pi5oc]

Oh, the suffering we have. Sudden dizziness, exhaustion like u rowed a canoe all day, lack of sleep, fogginess, body pain, heaviness, and on…while raising four kids.

[@VladVexlerME]

Sending you love.

[@rusticitas]

That was so well conveyed … lyrical even. A horrific moment beautifully expressed.

[@peterharma8937]

I am sorry that you are affected by this illness, Vlad. I hope that you can get the best possible, available treatments. You are a fantastic person with a brilliant mind and I am grateful that I have had the pleasure to take part of your analysis and thoughts on different topics.

[@jennyhorner]

You have a good way of describing experience. I find cognitive impairment is what I’m most embarrassed to be open about. A friend will give me a novel as a present and it feels too awkward to say that I don’t read for pleasure anymore. On bad days I struggle to read an email- the lines of text aren’t straight and I muddle letters and numbers. Before my 2012 relapse I didn’t have dyslexia so I didn’t grow up learning skills to cope with it. Also people speak to me as if I have a consistent level of intelligence, but sometimes I just can’t follow what they’re saying.

[@hanna.m2]

« people speak to me as if I have a consistent level of intelligence”, oh so well put, thank you.

[@qaywsx583]

I recently talked to you on Twitter about my so called "Neurocovid" and I have to say, the part after 0:58 resonated so much with me, like nothing else in life. It's as if your soul, or whatever makes us human, is slowly being ripped out of your body while you are still watching. For me it was as if all my senses and processing speed was dialed down to 5% within a couple hours and I KNEW this wasn't going to end well for me. I think people who have experienced this feeling are truly special, not because they are "better", but rather because they have lost something of immeasurable value and have lived to tell the tale. I am not very good with words, but watching your videos inspires me to make videos myself about the journey I am going through. I can barely tolerate any stimuli but people with M.E (or extreme LC in my case) are some kind of riftwalkers between life and death. That is also why you are so special. You have seen the depths people with M.E go through, but unlike the vast majority of us, you are able to speak and articulate these emotions. Thanks for your time, and best wishes

[@VladVexlerME]

Thank you so much for all these beautiful words. It’s big big big stuff. Do share your journey with the world if possible.

[@gracerobertson8772]

You seem pretty articulate. Why not make a few KZbin videos?

[@allisonmarlow184]

@@gracerobertson8772 Because we're still somewhat embarrassed about how we are now. We're changed. Different. And things are verrrry exhausting.

[@77thTrombone]

You are an incredibly clear and unusual perceiver, even after this "event." For my part, I had to look up limpid.

[@SlpBeauty333]

And people think Taylor Swift's folklore and evermore are difficult! Seriously how can kids these days not know words like "crestfallen". It is what it sounds like. They need to get off of my lawn with their damn avocado toast! 😘 Love from NYC ❤️

[@77thTrombone]

@@SlpBeauty333 I damn near woke up the remaining kid as my laughter to your comment borst out loud and echoed down the dark hallway. 🤜🤛

[@SlpBeauty333]

@@77thTrombone Well laughter is the best medicine, right? Watching reaction videos to Taylor Swift's "All Too Well" short film does give me hope for the avocado toast set. At least there's a bunch of men out there who recognize and call out "allegedly Jake Gyllenhaal" character's bad behavior.

[@Brian6587]

This makes me cry seeing this Vlad! I’ve been going through some mental difficulties and it’s got me scared. Thank you for telling your story and it’s phenomenal how much you’ve accomplished. I pray God brings you healing. I pray for that daily.

[@russelld01]

Had this happen at university in a Maths III tutorial after being asked to answer a simple question. Blank, mind blank and complete confusion. Muddled though the rest of the year, failed out of uni. I found conventional medicine unprofessional with the casual and dismissive approach on ME/CFS. Took decades to figure out a path to reasonable life. It came and went in cycles. Some years were better, others bad, and a few very bad. Things improved when I committed to learning a lot about what works and what doesn't. 2022 was "annus horribilis" year from a storm of internal and external factors. Applied what I learnt and by 2023 was in slow recovery, 2024 is much better. Every testimony adds to the weight of evidence. Thanks for sharing your story.

[@rubysilver3299]

Covid did the same to me. I lost myself. Three years later, I still have speech and memory difficulties and the fatigue has ruined my life. I’m not the person I was, and I’m not the person I should be able to be. I went from being a voracious reader to being too mentally debilitated to watch a video. I’ve recently started reading again. A little. It’s not much, but it’s something. I’m hoping that Long Covid research will help everyone with post viral syndromes.

[@Mario-to6tl]

Dear Vlad , its shocking to see what you had to experience, and I'm happy to see and hear you on Dez.22 on QA canal in 2010 i got problems wet eating and drinking, and 3 months later the Doctor seed to my you don't can work anymore because of Pancreas cancer I lost 25 Kg and now I am happy it's not getting worst, so I Live every day as cud be the last, many years I got depressed because of feeling useless but you canal give me hope and i thank you for this , greetings from Austria Mario

[@scorpiopam6303]

Thank you for sharing this. I too remember the moments when I realised something was very wrong with me. I remember feeling very frightened. It was the third Thursday in November 2006. I struggled for 4 years to stay at work but my absences became longer until one day I could no longer get out of bed. I was there for a year unable to do anything for myself. I,m still struggling. I wish you all the very best.

[@beverlykeys4330]

Hello Vlad,! I'm so glad I found your videos in general, and elated to find another person living (successfully!) with a chronic disease. I am also, (with about 1800 others in the U.S.for 32 years now). It's called L-Tryptophan related eosinophilia myalgia syndrome. (LT-EMS). Looking forward to reading up on your story!

[@simonreeves2017]

Bless you Vlad, and very joyous greetings from Botley in Oxford! Adore the work you do on KZbin, and so wonderful to know we share beautiful Oxford in our worlds.

[@kristalkristal2506]

I've had experiences like that, but what you went through sounds much more intense than my experience. It's a strange and frustrating feeling to lose the capacity to understand something that should be easy to grasp. It feels like realizing that you have a phantom limb without having any memory of an amputation.

[@steveolotu52]

That actually sounds like a interesting experience*. Mine was boring, I just got Covid: "Hey, how about I briefly take your capacity to breath and, in return, as a souvenir, here's a dose of CFS, to enjoy for years to come." *Not trivializing it, just gallows humor.

[@SlpBeauty333]

Vlad, please take care of yourself. I know you must be coming up to the exact date that you got so sick. Anniversaries like that are often very, very painful. I'm sending lots of virtual hugs and love to you. I give REALLY good hugs! In fact, let me send a round of hugs on the house to everyone here. 🤗 Because of you, I decided to try to make little videos of me walking around NYC. A member of "The Beautiful Community" thought it was such fun to think that they know someone in NYC...so why not share it? I have an autoimmune arthritis that can make pounding pavement difficult and painful but I can do it. I haven't posted one yet but you, and everyone in this ME/CFS are with me when I'm walking. NYC is just a very walkable city and there's cool stuff to see. I know many people here can't even walk and any video with so much NYC might be stressful? But I just want everyone here to know that if I can help you, I will do my absolute best! Lots of love to all from NYC ❤

[@galinalikhovetsky2896]

O, I am so sorry to hear that. I wish 🤞 you become better!

[@birkett83]

This sounds so painful. I'm experiencing something similar but less severe. I've been off work for about a year because thinking is just so goddamn exhausting. I couldn't get much done, I couldn't meet deadlines. I've always described it as brain fog. I have energy; I could walk 10km if I need to no problem, I'm just mentally exhausted all the time. Some days I lie in bed or sleep but mostly I feel like I'm awake enough to be bored but not mentally alert enough to do anything creative or interesting.

[@cristinaguine5235]

You say: " I found myself unable to speak or think or walk or read". That must have been a tremendous shock!!! But the thing is: you were still aware even though you could not think or comprehend the words. You were still there... beyond thoughts... beyond the mind... I do not want to sound superficial, careless or cold regarding the utter suffering you (and other ME patients) experienced - I do not wish that suffering experience to anyone, not even to a most uncompashionate, autocrat person ... However, isn't there also an opportunity to comprehend something about our nature, beyond the mind and what we beleive to be? Just a thought... 🤔 Love you, absolutely love your work and wish you all the best! ❤

[@KOIFishcat]

I hope that Vlad one day will read your comment, and will share his thoughts regarding your observation.

[@cristinaguine5235]

@@KOIFishcat Thank you.

[@hanna.m2]

Our neurologist says that children with ME have in common something difficult to grasp, a kind of heroic special matureness. I imagine a bit like kids that have gone through war. Sadly many of them can not attend school and do not get an education.

[@cenccenc946]

As a Philosopher, specializing in Philosophy of Mind and Language, that would be my worse nightmare. Thank you for sharing this.

[@dorriepruvenok8598]

Although i don't have m.e. I do have bipolar disorder and I remember that first big falling away from reality and being able to engage with the larger world particularly professionally as was current for me at the time. In a few weeks that passed quickly yet I endured forever that paralyzing falling away from my career and life goals was .. hard. The realisation of that turning point was even harder. ... I sympathise with your having experienced this change publicly as well. It is harder when in front of the most respected people in one's life ours began crumbling like a Roman fortress city wall in an earthquake. ❤❤❤❤❤ sending healing energies your way today, vlad.

[@SlpBeauty333]

By chance have your medical people done the genetic testing for you? It's not a Ancestry or 23 and me test, it's specific to psychiatric medications. It's really hard to find the right medication for psych conditions and it might be helpful. Lots of love from NYC ❤️

[@dorriepruvenok8598]

@@SlpBeauty333 no genetic testing required as my dad's family and my dad both also had bipolar disorder requiring psychiatric care at times. I was the only one to do the hard work of putting in twelve years to finding the right baseline meds that work for me and my best therapy: art/music and kitty cuddles!

[@SlpBeauty333]

@@dorriepruvenok8598 Ah glad to hear that you found what works! It's just so frustrating to have to go through all the medication trials. The testing can cut down on that for some people. I have anxiety disorder and insomnia and the testing just confirmed that yes, I'm on the right medications. It's a weird combination but it's right for me. Yes, kitty cuddles are the best medicine too! 🤗❤️

[@dixztube]

Omg. You are an amazing person. And look at you now - a true inspiration

[@user-hz6vd1lh6c]

28 years with this people do not realise how ill you can feel every day several things going on in your body foggy heads the worse makes you feel very ill and frightened

[@mindofown]

How terrible that must have been for you. So glad that you seem well now? At the very least what comes thru in your videos is that Your mind seems so very sharp

[@juliegale3863]

My dear friend has this and there seems to be nothing I can offer to help. Words or hugs don't help. All she can do is go to bed and hopefully sleep. 😢

[@girlfriday1299]

Blessing and good health to you, Vlad. I hope you continue to get better every day.

[@Coolguyallthetime2k]

Went through this when I was 19 and had no idea what was happening. People started to tease me and call me “slow” but thankfully it went away after about a year maybe because I was young. Recently, after Covid the CFS reactivated mildly and I had malaise for weeks but no mental effects, so I do believe you get better at fighting the underlying virus (EBV or HHV-6) over time. Hope you are well now!

[@rleriche5044]

I remember a similar experience. When you know something has changed and you feel it is not temporary. As the days go by your memory of normality fades. It's a mixed blessing as the new state feels less and less wrong until you forget the old healthy self and normality returns; a new unhealthy state. However, as psychology has measured, recognition outlasts recall. If the old me returns, I know it will feel like home.

[@finophile]

thanks for your back story, I hope your recovery is protressing

[@gumbycat5226]

Thank you for sharing this. It is mightily impressive what you've accomplished when facing such a challenge.

[@thomaswhitelake]

I love your work Vlad and appreciate you sharing this and so much of your humanity. Thank you!

[@Hope-un5wv]

When trying to rehabilitate from any Brain disfunction its good to try to stimulate neurons by using a multisensory approach. Touch eg sandpaper or smooth surfaces, scents, essential oils or flowers etc, colours, sounds , tastes. You can add these to all environments to help stimulate the mind or use an absence of these to calm it.

[@zalishaabdool6671]

Well Said?...Great Application!!... What About The Shoes? Advertised In The Shop?▪▪▪▪▪▪▪▪▪▪▪ Was The Last Things..Seen!!

[@karenfitzpatrick6256]

What a terrifying experience!

[@allisonmarlow184]

You nailed it! Exactly. It was terrifying.

[@manuelahildenbrand306]

Hi Vlad! Hopefully they find something to help You and the all community that suffers from M.E., in a near future. Let's pray for a Miracle 🙏 Thank You for despite ill you continue your talks to all of us that try to learn try to understand and love to listen about the "situation" that we're all in. Be Safe & Stay Safe Manuela de Hildenbrand

[@lesbendo6363]

Thank you for sharing. Good Health to you! 🙏💕🇨🇦

[@JuliettaRabens]

Wishing you wellness. I would like to learn more about Myalgic Encephalomyelitis. My younger brother is a strong advocate for rare disease research, having Ehlers-Danlos Syndrome. I have some strange neurological symptoms myself although different from this - more seizure like, although I do experience moments that feel like something significant is about to happen neurologically and it is terrifying - might be panic attack, but I have no verification. I hope more answers will be found for Myalgic Encephalomyelitis.

[@VladVexlerME]

Julietta thank you so much. We are still in need of getting our medical systems to wake up to how chronic illness works. EDS included. Thank you for sharing a bit about these episodes you have. Happy to hear more. I do wish you can explore further what the causes might be.

[@abstuli1490]

Then he probably knows of Mast cell activation syndrome (MCAS) that can have all the symptoms and triggers known from ME/CFS including PEM as well as hEDS. Scientific articles NCBI • The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome • Immunological dysfunction and mast cell activation syndrome in long COVID • The Emerging Role of Mast Cells in Irritable Bowel Syndrome • Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom • Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases • Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD) • Mast Cells, Stress, Fear and Autism Spectrum Disorder

[@benjamindemontgomery6317]

that made my ayes all teary. second time today. watched a girl trying to order a pumpkin spice coffee in a drive through. things most of us don't even consider a big thing.

[@cspace1234nz]

I’m really enjoying your videos and I’m pleased your condition does not define you. If anything perhaps it has given you something that you might not otherwise have had.

[@robbiepeterh]

Bless you man

[@collintrytsman3353]

all the best Vlad, don't stop your utube commentary on Putin and the war I love to hear your views,..........I am but one among many, keep smiling:)

[@celiaowen2444]

I am so sorry this is your experience but experiences are roads to a better you or me. 🥰

[@satiatedghost9216]

I also worked in finance and went through very similar. Would love to hear your full story

[@johnlaudenslager706]

I'm old and when I get my stroke or heart attack or cancer I hope I handle it near as well as you are handling your uninvited visitor.

[@Antontoo]

Name of the video suggested you could explain HOW you got it, not just the symptoms you felt.

[@facellina]

I fell ill with ME in 2003 too. But after all those years I recovered and I am feeling well but I am working from home now. I get post exertional malaise if I have to get up earlier than 10 am or I get trembling in nervous emotional situations but otherwise I am healthy. Get well soon!

[@davidbarry6900]

Out of curiosity, did this onset of ME follow a previous viral infection? Influenza etc?

[@VladVexlerME]

2 simultaneously

[@davidbarry6900]

@@VladVexlerME There's at least one hypothesis that most diseases are ultimately of viral origin; the similarity of ME in particular to "long covid" and Lyme disease makes ME seem likely to be basically a "post-viral syndrome". Let's hope that all the research going into "long covid" (I really hope there is some) uncovers useful information about HOW it happens - and avenues for treatment - that may also apply to ME.

[@flagmichael]

@@davidbarry6900 One exception is "Long Lyme" - a result of a bacterial infection (borreliosis). It is strange that it is fairly common with viruses but still occurs with bacteria in this case.

[@SlpBeauty333]

@@davidbarry6900 They're testing the arthritis drug Xeljanz for long COVID now. I happen to take it and my rheumatologist just mentioned it in our recent appointment. If you feel like trying, I'm sure there are clinical trials going on. Also "reactive arthritis" aka "seronegative arthritis" is another chronic illness that happens after an infection. You feel arthritis symptoms but your inflammation markers just aren't there. Similar to what I have, anklyosing spondylitis, which also doesn't show up in a standard test, there is a gene that goes with it, they just have to look for it. Hope that helps and love from NYC ❤️

[@tanyacharbury4728]

I've just watched a video explaining the typical symptoms of ME. They each sound utterly miserable even in isolation. Together they sound deeply horrible. You have my deepest sympathy, and my deepest gratitude for what you do in spite of everything you overcome in order to ... well, save civilization, basically. :-)

[@dhulbert855]

I am curious about that last picture. I have a sense of what is going on there from the fund raising sign, and the picture, and have a sad guess about the shoes with descriptor tags... On, second thought, I think I know, or have gathered, enough.

[@donwoodward2615]

Good your well now. My father went to Oxford in the 50s, he did medicine.

[@TalaAtTanagra]

I was the lead quantitative researcher for a global business consultancy, but now I often have to use my fingers to add and subtract (MEcfs since 2017, from "Long Flu").

[@gabriellerose3839]

I experienced similar and as a researcher/academic it was difficult to cope. I’ve found over the years that the extreme ME/ Fibromyalgia/Polymyalgia waxes and wanes over the years.

[@ash0787]

sudden daytime onset without a preceding infection ? mine was overnight and also disguised or overlapped with a strong viral infection that went on for a few days

[@saleeh32]

Life without believing in God and the afterlife is so hard and painful. I have seen that in your eyes when you contemplate life slipping away from you. I praise God because, in living the moment with you, I said in my heart, 'Praise be to Allah for being Muslim

[@Sheeeeshack]

Mine was leaky gut. All originated from my gut. I’m making HUGE progress with probiotics. Also going in for fecal transplant. Go find YOUR OWN source of ME.

[@MultiZirkon]

WOW !

[@genuina8422]

Research EMF in The body and syntons( intoxicação eletromagnetica)The cause.

[@michaelkimber6203]

What a terrifying experience Vlad. A friend developed ME after (during?) a long, arduous and depressing transition into a new job. This was 25 years ago when little was known about the condition other than "Yuppy Flu". He recovered in the end. Stay strong. ❤

[@actium9938]

How long was he ill?

[@neilclay5835]

❤

[@feedback3472]

But how did you get it?

[@doubtsalmon]

Yep

[@msdm83]

I have it 23 years since I was 16.

[@Aconitum_napellus]

The sky in Oxford is still grey.

[@gabriellerose3839]

Softer look

[@cultugarvealgarve7380]

The number 1 thing doctors are missing for M.E/CFS recovery! on youtube think of emdr, fishoil, magnesium, melatonine, vetgetables and fruits on a daily base, take care

[@mariannelabanane2589]

If you have a diagnosis of myalgic encephalomyelitis, always look for the underlying disease. Lyme disease is very often the cause. The symptoms are similar. I had this diagnosis (CFS/EM) 15 years ago and eventually found out that I actually had Lyme disease and other tick-borne infections transmited by one tick I hadn't seen. This is one of the main causes (not the only one, but the most important to look into). However, be aware that Lyme disease tests are not very reliable. Lyme disease specialists first check for symptoms (some symptoms are particularly typical) and do a blood test as well, but only at the best labs for testing for this disease (Igenex in the US).

[@stevesynth]

I know exactly how you feel bro 😓

[@mihakavcic7237]

How long do you have it? I got it in May 2019 in following months I drop to 20% on ME/CFS scale. Today February 2022 I am on 89%. Maybe I can help...

[@user-wk8hc5fq6q]

How you calculate %

[@mihakavcic7237]

@@user-wk8hc5fq6q Google CFS/ME scale... You should find yourself in one of those categories from 0-10... Today on 22.3.2022 I am on 91%. On Saturday I work 7 hours demolitioing an old house, I still can't believe it...

[@user-wk8hc5fq6q]

@@mihakavcic7237, thats very nice to hear. Wish you 100% recovery. 🙂

[@mihakavcic7237]

@@user-wk8hc5fq6q Hvala!

[@VladVexlerME]

Wonderful you are better. I have had ME 18 years.

[@Amethyst_fairy81]

I love your videos. I am suffering from me/cfs symptoms from covid-19

[@VladVexlerME]

Wishing you health - so sorry you are sick

[@Amethyst_fairy81]

@@VladVexlerME Thank you 💖 Wishing you health too. Slow and steady wins the race.

[@user-ye1bg4iu6m]

Are there hospitals for M.E. PATIENTS?

[@cathryncampbell8555]

Is ME remotely comparable to Fibromyalgia?

[@gracerobertson8772]

You clearly recovered a bit since that point though.

[@arasharfa]

do you base his general health on a rehearsed recorded presentation?

[@gracerobertson8772]

@@arasharfa idk. i have me/cfs and I am a youtuber. I find it pretty hard to make videos personaly

[@elkudos6262]

So, in some ways, Vlad Vexler is like Professor Quirrell from HPMOR.

[@liam.4454]

Did you not push your body too far by going to Oxford? I got Cfs when I was 17 by going to college, working part time and not knowing when to stop with drinking and listening to others problems

[@AK-ec1uw]

A bit disappointing, I was waiting for the line '& we fell madly in love" after looking into her 'limpid hazel eyes'. I bet you would have preferred a result like that also. My brother has the same illness & he is constantly arguing with people including government officials over its legitimacy & degree to which he is incapacitated. I never realised it was a predominantly female illness. His battles with the ignorant nay sayers make more sense now.

[@MandySBar]

Do or did you consume caffeine?

[@2Goiz_1ShanDA]

I don't care what they say... i still like ya!😉

[@zen4men]

Maybe we think we are a body, when, in act, we are a 'human being' - a being within a human body - the mind within the vehicle. Human experiences regularly include a number that involve leaving the body, being trapped in the body, the mind splitting, or variations thereof. Whatever the 'being' is, it is not a body, yet almost all of our existence is related to the needs of the body, and the endlessly changing demands of remote systems that feed on the control and exploitation of the Birth-to-Death-I-dentity we think we are. Clearly, people require a sharp shock to jolt them out of the mental lethargy that society is designed to produce, with unquestioning obedience to most of the brainwashed concepts drummed into captive populations. Given this set of circumstances, and given that mind creates thought, that creates events, then one has to ask one simple question of those subject to these supposedly random and sudden events:- 'What happened, say, 18 months to 2 years before, that brought you to a halt, but you were unable to deal with, and so set aside?' I have asked this question of a number of people, and many times the answer was 'How did you know?'

[@Gjonesy9]

The prevalence of ME/CFS in the US was 0.24% in 1988, 0.42% in 1994, and 0.89% in 2003. One study estimated that the total number of people with MECFS in the US could rise to between five and nine million people. This would be 2.7% of the population or an increase of 203% from the 0.89% prevalence in 2003.

[@salama1172]

Check into the Medical Medium. He has explanations and treatments for this. Doctors don’t know. Good luck.

[@dukejivetalker7541]

philosophers often experience physical ailments, as we all do, but like nietzche there is something to the suffering of the body that seems to spur a philosopher to greatness. Not trying to brightside your situation but i find you heroic in your predicament vlad and have confidence you can bear it, I massively appreciate your existence pained as though it may be. slava.

[@Alex_Plante]

Could it be that you had a stroke?

[@flagmichael]

In another question he answered that the ME occurred during an illness with two viruses simultaneously. Stroke symptoms are usually focal: the specific functions are easily identified. ME/CFS is broad with a range of symptoms.

[@rickvankempen24]

shortest origin story

[@Beatles68]

And the point of you sharing that information was what?

[@zalishaabdool6671]

Tell Me Please A Little More? About? RUSSIANS PLEASE?...I Don't Get It... Said One Will See A Russian War?...And Wouldn't Believe It's A WAR!!...Correct Me Please If I Am Wrong? THIS IS AMUSEMENT FOR ME!!...■I Must Tell You Sir!!■

[@jakklump]

I am lucky that the disease that I live with, Diabetes Mellitus type 1, is much easier to manage than ME CFS. I am also lucky because it has made me much more empathetic to others and their difficulties.

[@cfx3]

Don't obsess so much about your disease... maybe try and focus on recovery instead...

[@dirkkatz172]

culprit: microwaves. it can last 2 years before musclepain goes away