People with ME Want to Live.

My Twitter: where you can find my Twitter diary on living with Myalgic Encephalomyelitis is up to 160 episodes - / vladvexler
Vlad Vexler main channel - / vladvexler
Vlad Vexler Chat - / @vladvexlerchat
MEpedia entry on ME - me-pedia.org/wiki/Myalgic_enc...

[@Anarcath]

I've had ME/CFS for a quarter century. I've had countless crashes that rendered me bed ridden for days and weeks. I've never known another human being with the same disease, that is to say, anyone with whom I'd be able to sit down and talk face to face. As such, this is a very alone (not lonely) place to be. I still think that there are still things I'm gonna do, even though I have no idea how. Hope springs eternal, and so does my empathy for everyone with this disease. I wish you well.

[@euroe12]

We are not depressed. We are fighting.

[@heretoday788]

That is the single-most empathetic statement anyone has ever made about my experience. Incredible to hear you say it and think, "Yes, that is it, that is the only understanding I would like from others." Thank you.

[@karagumruk7330]

You guys know there is a cure and people recover %100 right?

[@brianfreeman8290]

You are the most engaging, articulate and interesting contributor on KZbin. I'm so sorry that you have to live with this.

[@regular-joe]

Love, support, and gratitude for you and the community.

[@IvetaWells]

Dear Vlad, I wish I could do something to end your and others suffering. I am still here, sending lots of love, light a healing. ❤

[@juliarichter6987]

❤ to you and all the others that need more life so desperatly, but can't get it for some reason or another.

[@PragerFenster]

Heartbreakingly true. Thanks and blessings. ❤

[@stellarcollapse]

How do you deal with family members that are not supportive and do not understand your daily trials?

[@wirrwarr8834]

You have no idea how much I understand you! And elsewhere in the world they bang their heads. If they all had what I have had to endure for 44 years, there would be no wars in the world. Everyone would try as best they can to live the day. Most people are just too well off to know what being unhealthy really means.

[@ChrisEkstedt]

I'm so sorry you've had to endure this for 44 years. I cannot imagine what you've been through and are going through still. I am lucky to have only had this condition n varying degrees since age 56 (am 75 now...was slow, gradual but steady onset) so have had many years of a normal life. The last 20 have been frustrating so I can relate to that aspect. I wish there was a breakthrough for those of you suffering from this disease for so long.

[@wirrwarr8834]

@@ChrisEkstedtHi, and first of all thank you for your kind words. My fatigue syndrome is just a comorbid illness alongside other illnesses that can all be comorbid. I had my first symptoms when I was 6 years old. All problems disappeared during puberty and only returned as an adult. From then on it took me 27 years to fully diagnose all parts of the diseases. Because many of the symptoms overlapped, I was misdiagnosed and treated incorrectly countless times. And what always comes when nothing comes of it is the statement, go see a psychologist. In the end everything was found in the International Classification of Diseases and made sense. The nearest specialist who can deal with this is three hours away by car. I have been severely limited for 25 years. The last eight years have been the worst, with painfully slow improvement in the last two years. Even as a small child I said that I wanted to be something very special... I should have been more careful with my wishes. ;-) All the best to you and thank you for your contribution.

[@sparklingblackrose3]

Thank you Vlad for speaking to my soul. Especially the relentlessness of the pain of being left wanting to live and that beyond beyond our grasp. I shared it on my social media and I hope that people who care about me will take a couple of minutes to watch and seek to understand how we are all experiencing ongoing pain while we survive as is. Sending much love. I'm into my 17th year of M.E. I wish it got easier, but some things seem to become more acutely painful as you realise they are now beyond your grasp even if you recovered tomorrow 💜

[@ryanbradley5192]

Thanks Vlad. You're an inspiration. I've recently been dealing with ME. To see what you're able to do in the small amount of energy you have is amazing. I'm trying to emulate that.

[@glenn5328]

Hi Vlad You are a truly amazing person. So glad KZbin brought us together.

[@Grant_S_M]

I'm so thankful you share so much of incredible you with others. ❤

[@pipingbob720]

Keep up the fantastic work Vlad you speak like no other for everybody who has to deal with this. I'm in my seventh year. Lots of love and support

[@lindajoyner3370]

Thank you for sharing these words. Words, I have been unable to find nor put together like you have so eloquently. To hear these specifics words somehow feels like validation of my own perspective that I have felt for thirty plus years. At last, coinage that has lived inside my soul finding a way out through your thoughtful speech. Once again, “Thank you”. Sending love to you.

[@secularsekai8910]

You are strong and do good work. Thank you for sharing your thoughts here.

[@GardeningMa]

Thank you for sharing all this. It is not always easy to understand other people's experiences. Thank you for helping me understand people like my husband, and other people living with huge disabilities, better 😘 Keep up the good work of making a positive impact on the world. You are doing great even though you obviously would want to live so much more... 🥰💪🏻🕊️🙏🏻🇬🇧

[@allisonmarlow184]

I can't believe how well timed this was for me ... Down to the exact second!! Something's got to be going on behind the works in this life for something so impossibly "uncanny" to have just happened. Thank you Vlad. I'm truly freaked out right now. A reluctant believer.

[@MikeOxlong-]

Ditto. 😢

[@SlpBeauty333]

"The more I study physics, the more I believe the metaphysics". Here's hoping that you get a few more hours of what you want to do in your life today. Lots of love from NYC ❤

[@theredjediknight]

I have been experiencing severe fatigue for over 20 years, finally, two weeks ago, I was diagnosed with Autism and ADHD, I was unaware that fatigue was part of my condition. I used to push myself so hard, I tried so hard to improve my education & employment, but it always came crashing down.

[@bartklein4362]

You help me deal with my own pain by posting this. Thank you Vlad. Thank you community for your kind words. I feel a lot of love and respect here.

[@ChrisEkstedt]

I know. I want more life too after 20 years of CFS. I wish you healing and life Vlad and any others here who have developed this disease and have to live with frustrating limitation. Your offerings on KZbin are a great comfort and provide sanity and centering. I deeply appreciate your efforts.

[@kraekennedy]

I don't know how I missed this when it first came out. Thank you Vlad! Even though I have had and suffered greatly with M.S. for 14 years, I was only formally diagnosed 3 years ago. I have spent that same 3 years just giving up and only seeing the worst of what my future may have to offer. Since I found your channels and you have openly shared about your condition, I have been so inspired by your will to make you good, decent and even your less than ideal days count. Thank you for continously opening my mind in more ways than you may have considered.

[@DanS8204]

Kimberly, hang in there and make the most of each and every day. You have so many good things to share with this world, and there will be better days ahead.

[@tillrassbach]

Thank you, Vlad.

[@bigd4561]

Jesus... so true... so bloody true it hurts. I do not suffer like you do, but I have suffered... and God knows I relate to that "wanting"... I have gotten by with the kindness of others. I hope those who struggle have those "others" to make up for life's less pleasant challenges. Warmest regards, 🤝

[@wc8246]

I had known you were ill but not with what, my mum had ME when I was a kid and it absolutely destroyed her, sorry to hear you're suffering from it and I hope it gets better for you as it did with her.

[@ianlewis2813]

Time is the most valuable thing we have .

[@kimmcdonald1096]

Thank you 🙏

[@SarahCoxWrites]

Never has a truer observation been made. I am three and a half years in, and there is nothing more that I want than to live a normal life, able to do things that I can no longer even contemplate. Thank you for sharing your experience, that resonates so deeply with many I am sure xx

[@gabriellerose3839]

People with chronic illness, both visible and invisible, live in a world where they are tourists to the well and the chronic illness exacerbation worlds. They belong in neither. It’s quite lonely.

[@rumination2399]

You’re a champion man. I give you a hard time as a political intellectual but you’re an impressive and inspiring human being.

[@tessivymills4511]

🌸

[@scotty101ire]

Even in the darkest of times and places through out all of our combined existence nobody ever really wanted to die it was either forced on you or you have no other options left many many great people died to young

[@buzzukfiftythree]

Thanks Vlad for your valuable videos about what is still, in spite of research, an illness which is a mystery. I was diagnosed with it in 1989. Over the next few years I gradually recovered but still experience what might be regarded as mild to moderate ME/CFS. The symptoms can be alarming at times and I still have to watch that I don't overdo it. I'd love to climb mountains but can't, so I do it the easy way (by cable-car) and walk once I get up there. It's just one example of finding alternative ways to do do activities. It's depressing that I can't do half of what I did before, but I'm thankful that I have a loving partner who understands, and that I can still be reasonably active within my body's limits.

[@katerinatadenev96]

I am so grateful for everything you do! Thank you!

[@MarianaSantos1974]

Yes, we do want life in our lives very bad. I do not live with a chronic illness, but I live with a chronic limitation. I watch your activities here and warms my heart that you have found your way to express yourself academically, emotionally and socially and this expression is elevating and nurturing to others, like me. You are one of the lucky few ones with ME that had the opportunity and condition to pursue brilliance in so many areas. And after you felt like you were ready, your share your bright light shine hard onto us all. You show that you totally deserved the opportunities you had, you have built and keep building a beautiful legacy and all this together makes me very happy, content and lucky to have found your channels. Namaste 🙏

[@RileyH-fh8vf]

For what it's worth I wanted to share with you the story of Dr. Terry Wahls, who is well known and still living (U.S.). In her early 60's she was diagnosed with advanced MS. She was confined to a zero-gravity recliner chair and anticipated a feeding tube. The best doctors could not help her. Long story short, she went back to her medical books and focused on cellular mitochondria. She completely changed her diet. Six months later she participated in an 8-mile bicycle race. She has written a number of books, in addition to YT interviews and YT teaching videos on the role of diet and Functional Medicine. She started the Wahls Institute to help others in various stages of MS. Her MS is not gone, but in remission. Thank you for allowing me to comment and to share this, as my thoughts are that the information will be helpful to you.

[@chicomacdonald7843]

I wonder if the wag who said " When psychology and philosophy get over the mountain, they will find that religion was there all the time" may be right.

[@ozlemdenli7763]

thank you

[@gordsimpson8916]

Thank you Vlad

[@begr_wiedererkennungswert]

🧡

[@ianmcgee9850]

Beautiful. A beautiful mind. 😘

[@evelyntingle1927]

Hello Vlad Have you been tested for Lime's Disease? Hard to get a diagnosis, years after infection, from vector-born tick bacteria Borrelia burgdoferi. I went 8 years with 'ME' and I so relate to your wonderful empathic reach out in this little blog. Only in hindsight, when my niece recently got the red ring associated with Lyme's ( it seems to spelled both ways) did I realise that prior to my slow slide into ME territory back in 1985, before Lime's disease had been understood and named, I had this red bulll's eye ring. I also lived in Devon at the time, which later was realised, along with the Scottish Highlands, as being a hot spot for tick bites. I was fortunate to gradually recover and become well again by 1993. I wish this recovery for you and for all ME sufferers out there. No idea if this provides anything useful to you. I so appreciate your wonderful philosophy blogs. I love your compassionate ethos. Best Wishes Evelyn

[@DeniseSyrett]

I want to see how everything turns out. What might happen later that I might miss. It is the story of life that I want to hear that keeps me going. I’ve had ME for thirty years, though it wasn’t called that back then.

[@Cairol58]

Now, after watching your precious videos about the ongoing war and its background KZbin brought this video up for me, most likely your most important one! Sorry for being unaware about this terrible illness you have until now. I wish you well and thank you Vlad. From Europe with❤

[@snowboundvera6821]

Thank you Vlad.

[@mikerouch416]

Thanks Vlad

[@johngreally9599]

ME me: You have ME, and you've got me. I'll be patient Mr Patient, and anything else you ask. I know by many means what debility is, and what strength, dignity, empathy, and compassion are. We're learning. Thanks to you.

[@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

[@DoloresJNurss]

I very much appreciate this.

[@Jesse-ey5xd]

🖖

[@briseboy]

I've found that i want for others to persist, even if it is some dissociation or offshoot of my own presumptions or determination that i will, for a while. I also seem to want to help others, and attempt to correct in the limited, tiny areas in which i have sure perception. This is a daily thing, rather than the monumental aspiration to be remembered that's so often a stated goal by many. How is it that such hubris arises? It is possible that we have overly insulated ourselves from life's complete ephemerality Religion, literacy, perhaps the very same impulse to experience, when extended socially, leads us to project memory onto others. The hormonal jolt received from perceived effective action, induces persistence. We brand, scarify, and momentarily change our brains through action. BDNF and IGF-1 are increased when learning anything, acting. This occurs whether or not we have been taught, or are able to feel, morality. There are other hormones and neuroactive molecules whose production is increased by action. We signal to ourselves success, prosociality. We are inherently hedonic, certainly all living organisms have been and will always be.

[@bungalowjuice7225]

Vlad, I have a question regarding permanent diseases. I have test results from an organ that points towards potential autoimmune disorder. (that sentence sounds funny! XD) So, my question is how to understand the difference between it and other things? I have autism on top of it all which makes it very difficult for me to read signals... of all kinds. I also never feel thirst or hunger due to autism for example - only the results of lack of consumption of food and liquid like headaches, nausea etc. That doesn't make it easy to read oneself.

[@mumsow]

❤💙💚💜

[@Not_that_Brian_Jones]

♥

[@TheBauwssss]

I see now that ME just an abbreviation is! I thought at first somehow (yeah, sorry I can be extraordinary dumb from time to time) people around you were losing the will to live or something, but that just did not make any sense to me because I watch your videos and from those I gleaned that you must be anything *but* a nuisance to those around you because you seem like a really kind, nice, warmhearted and wholesome person to me, Vlad! Perhaps it may be an idea to put the meaning of the abbreviation in the title, or on the thumbnail or something. But now that I've looked up the actual meaning (Myalgic encephalomyelitis :O) I kinda understand why you went with ME in the first place :D :D :D I hope you have an awesome and very productive day, Vlad! Much

[@zetristan4525]

Vlad, chronic pain is an utterly terrible thing to deal with. But isn't "wanting more than one can get" a terrible trap to plunge into? Imagine if everybody in the world were a kind, empathic genius, with food and shelter, but only 2-4 hours of productive energy each day. Wouldn't you be absolutely thrilled to be yourself in such a world? I feel that society tricks us with comparison-mindset, if we don't develop felt emotional intelligence enough, when we could be mostly at peace and profoundly grateful. I know the community is so grateful for you, just as you are (even while irrevocably dismayed that you won't be the next president of Russia) 🌱

[@ilanweinberg2561]

Thank you for this post.

[@begr_wiedererkennungswert]

Would you say this to a child who lies in darkness in pain 24/7 too?

[@ilanweinberg2561]

@@begr_wiedererkennungswert Presumably he wouldn't. However, Vlad is not a child. My understanding of Zetristan's comment is that it's beneficial to not compare oneself to others and to accept what we can't change and to practice gratitude for the good things in our lives.

[@begr_wiedererkennungswert]

@@ilanweinberg2561 Maybe he answers. Where's the age line? Children who get ME often die in their teens or twenties, and one of the reasons why zero medical treatments have been developed in the last 50 years, is that it seemed a better idea to tell patients to find a more positive psychological response instead.

[@hanna.m2]

I disagree. Wanting to be able to move freely, to use our brain, to be social is natural, and there is nothing wrong with wanting it. And it doesn’t mean one cannot find gratitude and happiness. And if one can’t be grateful and happy, then that is also fine, because life is not fear.

[@SlpBeauty333]

Dearest Vlad, Your timing is often incredibly uncanny. On my "to do" list for today was send this link to Vlad because his ME channel is slipping down in my KZbin view. When Rachel Maddow covered this piece, you were posting the "office rocket" stand up philosopher and it was not appropriate to post it there. So for everyone in this community that deals with ME/CFS, this was an amazing piece by Rachel Maddow. I'll add the link to a separate post because YT just screws up sometimes. I was going to ask you to do a reaction video to this but it's really not necessary. It's very much worth watching.

[@SlpBeauty333]

Here is the link to the Rachel Maddow show from 3 weeks ago about Judy Heumann. kzbin.info/www/bejne/jXzMdX2ngtelmbM

[@Edo9River]

I promise you AI is going to guarantee that 10% ànd probably more . I know for a fact that it is being researched just as fast as the money becomes available

[@TheFracturedfuture]

I sure don't. At least not with M.E.

[@Mohnfisch]

What Diets have you tried, and have they had any significant effect?

[@kevinlynch1780]

surely this is a mitochondrial disease? somebody must be working on how to cure viral infections that damage mitochondrial function? It could be lots of things sure, but this seems the most likely - I'm just an engineer so what do I know?

[@darrenislar1053]

I just picked this up: kzbin.info/www/bejne/qZzYd4uMrrqsiNk

[@paulstuart551]

The severity of ME aka CFS varies from person to person. It used to be thought psychosomatic as it was usually linked to depression, but is now thought to be viral or post viral in cause. Symptoms are erratic, a person may have good & bad days, Only one person has been thought to have died from it in 2005 (but we don't have her medical records), this is odd as it only came to the attention of doctors in 1990 aka CFS. The basic symptoms are vague & erratic; generalised pain. fatigue & an inability to concentrate: I think many people would identify with having these. It is not a disability, people tend to improve with time. I had a friend who was diagnosed, most thought it attention seeking as she was often very capable, she had gay friends dying of AIds & as soon as she became part of an official group she was unstoppable. You seem to have full control of your mind & body with no sign of pain, you are even well groomed. ME is not a disability, it is a syndrome - a group of symptoms that in time a recovery occurs. Stop whinging & focus on what you can do at any given time. I think this is offensive to people with the endless list of severe progressive illnesses & disabilities who live with increased constant acute pain without any hope of recovery or respite. For such people there comes a point where death becomes a blessing.

[@ehughes8829]

♥️

[@ThePetergate]

❤

[@kirsimatikainen6527]

❤

[@gevisu]

❤️

[@romanovinwonderland]

❤