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.

This video was the first episode of VladsMEdiary shared on Twitter in April 2020.

[VladVexlerME]

Healthful wishes to everybody at this time!

[allisonmarlow]

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.🙂

[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.

[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.

[rudyardkipling]

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.

[TheCriticalSigma]

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

[royalukas]

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.

[steveolotu]

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.

[Thomas-mkcu]

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.

[allisonandrews]

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.

[omygod]

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.

[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!

[thefarmerswifeknits]

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.

[CS-pioc]

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.

[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.

[peterharma]

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.

[thTrombone]

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

[rubysilver]

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.

[rusticitas]

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

[Brian]

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.