Severe ME Awareness Day: My Thoughts.

Severe and very severe ME affects about 25% of people with myalgic encephalo­myelitis (ME).
me-pedia.org/wiki/Severe_and_...
Myalgic Encephalomyelitis (ME) is one of the most disabling conditions on earth. It affects 1/250 humans. Most ME patients are women (75%).
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

[@user-ge6hv8hh1l]

Thank you from a severe me Patient from germany 🥰

[@VladVexlerME]

Wishing you a bearable day.

[@michaelcarrithers6811]

Thanks for this, Vlad. I first met your work through your main philosophical/historical reflections on Putin's world, and have been following you there for a few months. This is great and important work and I deeply appreciate it. I delved deeper tonight, though, and found this further side of you, which resonates even more deeply. In a month I'll be 77 years old, and with my wife I share the care of our son, who has been bedbound with ME for ten years. We went through his very severe ME -- the darkened room and everything that goes with it. In time he recovered himself enough to create a new life and his own powerful agency, working with newly discovered e-colleagues and friends across the world. But he still cannot stand for more than a moment, or leave his room. So I hope you can see how much I resonate with this facet of your life. Thank you very much.

[@sararevesz8926]

Vlad, thank you for sharing this information about ME. My awareness of this condition/disease was zero. Now, I have read through the linked materials and experiences. Those who suffer with ME are no longer hidden from me. I see you and your carers. I pray for treatment advances and CRISPR breakthroughs.

[@Anarcath]

“There are so many ways of being despicable it quite makes one’s head spin. But the way to be really despicable is to be contemptuous of other people’s pain.” ― James Baldwin, Giovanni's Room

[@trex3003]

Some years ago I followed a woman with ME on YT. She would post about her day to day life, when she was up to it, with her service dog, which was a greyhound that she trained herself before her health got worse. She was so articulate and wonderful -- it was just heartbreaking to witness her daily struggles. At some point her health spiraled downward, and she stopped posting. I think about her often with concern about her current health status. I learned about the condition through her postings, and I became aware of how figures such as Ricky Gervais publicly derided and humiliated ME sufferers as shirkers -- and worse-- as part of his "comedy " act. To this day I can't even look at that man. I am waiting for his public apology and financial support and advocacy for ME research as penance. My best wishes to you, Vlad. I appreciate you.

[@emom358]

I don't have ME, but I am a chronic pain sufferer, and I see you. Keep taking care of yourself, we need a moral compass in these interesting times. I SEE YOU

[@VladVexlerME]

I see you too.

[@beeholtzclaw7935]

Thank you Thank you, from a caretaker of my severe son, stay strong we need more like you!

[@VladVexlerME]

I understand all you have to hold 24/7. Peace.

[@edwardjones1773]

‘Vlad the Philosopher’ Super hero and common man. The evaluation and way you impart your thoughts are brilliant in so many ways. You remind me of the BBC series in the seventies ’The Assent of Man’ presented by Jacob Bronowski where his presentation was thoughtful and instructive. Philosophical debate can be perceived as high brow but you impart balanced, entertaining insight and it feels like you are chatting with me personally; given your ME or even because of it I’m sure your channel helps you as much as it does us.

[@soggymoggytravels]

I got directed to this channel from your other channel, and it’s very telling to see the difference in subscriber numbers between the channels. Even with the emergence of long Covid, sadly the plight of those with ME doesn’t seem to be compelling enough for the fit and healthy. Few believe in the severity of ME, and few understand how it’s not only a debilitating illness physically, but that it can also be a very lonely one and psychologically destructive. Hugs and care to all those fellow sufferers out there who live invisibly with this every single day.

[@PandemoniumMeltDown]

I am fit and healthy, I think. I am appalled by ME. I just learned about it a few day ago, here, and it takes me an hour and more to read all the comments and meditate on all these experiences. Also, Vlad makes it all so easy to understand. I injected the emergency, to learn and act adequately, in my partner's head, who is becoming a psychologist, now finishing master. That's one psychologist who will have a pretty good idea about what to do and, hopefully, will spread it around, and I hope the wildfire will be as grand as Vlad wants it to be, you never know. There are good chain reactions after all. I know, I dream a lot, problem is, I act up on them, which is preferable, I think. I wish you all the best!

[@concorkery8496]

I cant begin to imagine the suffering you.guys endure. I really hope that you get the support and care that you need asap

[@VladVexlerME]

Thank you so much!! I

[@juliarichter6987]

Oh Vlad. I wished I could help to create awareness for ME, it is such a shame that there are so few ressources going into this field. I hope you somehow manage to keep in check the thoughts about what you could do (for the world), if you weren't restricted by this illness. Be assured that your channels are very important for a lot of people. For lunch I rewatched your video about Peterson/expertise/Mersheimer. This video means a lot to me. There are so many important thoughts expressed in this video. I hope you will elaborate on every one of them in a lengthy video. Love, Julia

[@VladVexlerME]

Julia I am moved by your message. It is perfect. Thank you so so much.

[@IndelibleNihilist]

How is it I have been watching you for so long and just found your diary… *sigh algorithms* My goodness.. I had *no idea* ME was this kind of hell..

[@juliarichter6987]

How are you? Hope you are not to exhausted. It's autumn. Please rest as much as needed.❤

[@badgerdad777]

You have responded beautifully to the pain you have endured. I am sorry you have had and continue to have to endure it.

[@HeyMJ.]

Thank you for driving ME awareness in the KZbin space. It’s a far-reaching platform with longevity; distributing content globally and continuously for years to come.

[@ChiarelOD]

Thank you Vlad

[@Grace.allovertheplace]

❤️

[@PeppermintPatties]

Thank you, Vlad. This is so interesting to learn about, as I don't have ME, though I am disabled. I can't imagine being in pain all the time. Must be horrendous. Thank you for educating me. I wish you and all with ME well. X

[@MrGable237]

I take PPQ and CoQ10 and it helps my exercise intolerance.

[@willowithywindle]

We do indeed need action now, I am not holding my breath though. People don't want to see us or understand us, we are in the too hard/disgust basket.

[@humanitarianH]

Thank you and I hope you had a tolerable day!

[@makafre]

Hey Vlad, just discovered your channels! Excellent work you do, I like the style and language you use! I too have a chronic disease (MS) and I completely stopped the autoimmune aggression being on the Coimbra Protocol. You may want to check it out, the basis is huge doses of vitamin D, the most potent natural immunomodulator there is. Cheers!

[@tamarapalmeirat4486]

✨

[@tamarapalmeirat4486]

✨Thank you so much Vlad ✨

[@bitegoatie]

At least your disease has a name and has been to some extent defined. Many of us have fallen through the grating that is modern medicine without even the dignity of our conditions being named. Without definition, there is no research targeting a disease. Without that, one faint hope resides in breakthroughs on parallel diseases that may provide clues. The other hope resides in personal optimism regarding possibly coming to an end that doesn't end in death. In my case, that would mean the intense 24/7 pain would end and that the self-destruction of my organs by my body would somehow end and that my other diseases ("comorbidities" are a bitch, and for people in ongoing pain they are, alas, not rare) might continue in a manageable state. This might seem far-fetched, but keeping hope alive is vital to people in pain. I do not have your disease, but I know what you mean about exercise making matters worse. Exercise clearly helps some aspects of my general health, but I pay dearly for it. I have a small window in which I can operate (when I feel well enough to start, which is rare these days). Straying beyond that limit brings lasting consequences. My illness began in its current form more than 31 years ago, with certain things having always been with me. There is so much loss in all that time. We cannot, however, swell on the losses. We much find the beauty in the life we have, whatever positive way we want to interpret that prescription. Doing this while still appreciating the humanity of people we trust to help us and indeed pay to help us who nonetheless refuse to help in any more than purely formal ways can be a challenge. Illness does teach one patience, however. Which is something we can look upon with gratitude. Thank you for putting in the time and energy to do this. I had thought of doing something similar some years back, but I have been too sick to manage. I am glad to be able to watch and, now and then, to comment.

[@viderethevaccinatorfromhol7536]

I suffer from Huntingtons disease. In my case they know exactly what causes the problem but they can't fix it. There are still many side effects they don't understand. I am in pain 24/7. Central neurological pain. Mis communication in the brain. Sometimes I feel completely lost seeing all different kind of doctors. Dec 6 a new round is starting. Placing a neuromodulator in my brain. I hope it will relieve the pain a bit. Awareness is not existing for people with HD. Patients don't want to speak about the "devils disease " it destroys whole families ". Strangers think that I am drunk all the time. That's not true. Only half of the time 😂

[@PandemoniumMeltDown]

😅 I hope the device will make you feel better!

[@minketheodora]

ME has not the last words, it has not even words, only much suffering and misery,. ........So; how to deal with much suffering and misery? ...................well, learn how to fly,............and to walk in imagenation, and see what may happen,...................I dont take your illness lightly, but i have gone through much suffering and dis-ability myself, and i am still in progression,.....you know? It is a proces,.......until you have dealed with the facts that the sufferor is not who you are,.,...you are much greater then that,.

[@darlingstuff1560]

WHAT carers? I have NONE. Living in a home piled high like a hoarder as was moved and my 115 : 3 1/2ft x 2ft x 2 1/2ft packed boxes dumped in my new home up to the ceiling in three main rooms and shower area of bathroom.... for me to sort out when I cannot even open one......no cleaners.....down to using paper cups and plates as cannot wash up.....to eating crisps....as cannot cook. Not bathed for 3 years as cannot tolerate shower water hitting my skin....and housing association who forced me to move so they could sell my previous one as landlord ...wont install a bath for me to soak in as I had before to soak for my whole body pain.....SO WHAT CARERS AND ATTENTION? I know for a fact I am set to be one of those women who dies alone and is found years later....mummified