Tiny message for you if you have ME or Long Covid

Myalgic Encephalomyelitis (ME) is one of the most disabling conditions on earth. It affects 1/250 humans. Most ME patients are women (75%).
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...
My Twitter: where you can find my Twitter diary on living with Myalgic Encephalomyelitis is up to 150 episodes - / vladvexler

[@elsagrace3893]

This message would have been so very validating for me in 1991 when I came down with “fibromyalgia” which to me is the same thing as ME/CFIDS. There was no doctor, no person who could see me or what I was going through. A very kind physical therapist is who told me what she thought I had. She gave me some material to read. Despite her reports to the Doctor he told me there was nothing wrong and that I should go back to work. I could not and did not.

[@TheBushRanger.]

Read TMS Dr John Sarno

[@crossercuss1]

thankyou so much... the disbelief is unreal... so so hard

[@VladVexlerME]

It is unreal

[@ruthherring5684]

Thankyou so much! So sensitively put, and so necessary. Seeing you and the invisibility of your illness too.

[@VladVexlerME]

Seeing you.

[@69birdboy]

You are so fucking eloquent and humble...and giving...thank you so much

[@localizer50]

I’ve had Long Covid for two years now. It’s quit unbearable. Thank you from Texas.

[@Bcf2128]

Thank you for this.....I was infected with COVID in December 2020 with secondary multi-segmental Pulmonary Embolisms shortly there after. My life was/is destroyed ,I had just been elected the Treasure of my professional society. Thank you for just speaking about it.

[@kathyforeman5603]

Thank you so very much for your kind words and true acknowledgement!! I have had Chronic Fatigue/ M.E.since 1988, along with Fibromyalgia. At that time they did not really have a name for either of these syndromes nor did they have any idea how to diagnose or treat them. Over the years I learned to cope and deal with these invisible illnesses along with other syndromes that I have gotten along the way. In February 2022 I became ill with Covid and in May I added Long Covid to my list of syndromes!! I am 52 years old but feel like I am in my 80's a lot of the time! My suggestion for anyone with any of these things is listen to your body, rest and pace out activities and be very kind to yourself!! Realize that you matter regardless of others perception and do not try to prove yourself to anyone!! You are unique, wonderful and worthy, and you are Not your illness! Love yourself enough to realize that resting IS self care!! Thank you again. You are amazing for taking the time to care enough to post this!! ❤

[@MerryMaggie]

I migrated over here from your main channel and see there are only a few videos. Please make more! Its good to hear from someone who understands. I have had ME/CFS for many years, but disabled since 2011.

[@thefarmerswifeknits6190]

Thank you so much for this. It can be a very lonely place to be when everyone in your world is tired of hearing about your pain and exhaustion. I try to impress on people there is no word for how crushing it is. Thank you for letting us know we are not alone. I am 18 months long Covid.

[@Amethyst_fairy81]

Thank you 💖 This has been awful. I've lost so much. I know will get some back but my body has betrayed me. I really appreciate it.

[@christopherhearn4600]

Thank you, I left a message in the wrong place 2 days ago, no one even family acknowledges that I go through pain everyday every second and it makes it hard to find a little strength to live, this makes me quite emotional, this means more than you can realise, 😪 I don't even know how to get formally diagnosed I'm treated like I'm crazy, and without a label there seems to be no acceptance without judgment, you have changed the world and given me hope, I've found that my symptoms cause chronic depression etc, the doctors then tell me I don't know my own body and that the depression is the cause of the illness, they won't listen and if I try to tell them they get defensive as I'm not supposed to disagree with them, the pain, weakness, some symptoms are almost impossible to describe, it feels akin to living the last throws of life for year upon year, you mentioned that other people doing certain things eg multitasking can steal you of energy strength, I can see an elderly person walking in the cold and I become what feels similar to having to walk in the cold with fever, I have wondered if me and simaler conditions can increase the amount of mirror neurons which gives much greater empathy, I find that I'm greatly affected by people, animals and environment to a great physical extent, You are a great great person, I feel I have a concept of what you live with and to find the strength to help others is fantastic, if I can ever find strength I would like to help others because I have found some healing when helping others, utterly brilliant in every way 🙏👍👍👍👍

[@lyasbelmadi85]

Hi hope ur feeling better, I just wanted to tel u that am in exact position and I know totally what ur going through .

[@christopherhearn4600]

@@lyasbelmadi85 hia there 👍 only just came across your message I've checked all settings on phone, KZbin etc but not getting notifications, my heart goes straight out to you, I've suffered so long and had to struggle with how others perceive me and the influence this has on your own psychological battle it's a lonely eternal battle, it makes me wonder how many struggle, try to survive this and how many lose the strength to carry on, I can't thank you enough for speaking to me, after years of having to battle with specialist who deem me crazy or at least make feel like this I gave in and tried to adapt to a life unlived, it has affected every relationship with my family, work and ultimately left a small life of survival, I wish I could take this away for us both, I can't actually imagine how it would feel to feel as I was before, I was only 21 very fit and active very positive despite a difficult life, at this point no one gave me answers or even took genuine interest, now that I'm 46 they say you're getting older, I've never been able to express this to provoke someone to attempt to help, I've had to try and prove and suggest things, reading post graduate endocrinology, neurological research, always wanting to find anything while I still have life, but eventually it was beaten out of me and I hadn't the strength, I still have a little hope, and hearing from you is the first time another person in 25 years has spoken with true understanding, I am unable to show my gratitude, so so grateful 🙏

[@ruthherring8207]

Don't ever believe anyone if they tell you that you don't know your own body. You live with your illness 100% of the time, and in that sense you're a "specialist " regarding your self. You can learn what makes your symptoms worse, what helps etc. There are many professionals who simply have not been given the correct information about M.E. (ie what M.E. Specialists know and what science has discovered about it) so don't understand the patients sitting in front of them. Trust your instincts and take what your body is saying seriously. I hope you get a diagnosis soon. All the best, xx

[@davidpetersen6694]

I got a pop up that you were not feeling well and that you were trying to get your strength back. Hope you are feeling better soon. I myself struggle with chronic autoimmune liver disease. This requires 2 extensive blood tests and two scans a year along with daily medications. These tactics keep the radar up and running to scan the horizon for a downturn in my health. Fortunately for now, my disease is in complete remission. But of course it is never gone. This forces me (in a good way) to break through the daily bout with depression and to cherish each new day. One side effect of my medication regime is “flu-like” tiredness. I work hard to get ahead of it. Vlad, you are really one of my favorite people on KZbin. Thank you for posting your kind, compassionate feelings. Though I am in a different leaking boat ( the nasty chronic disease boats)trying to bail water to stay afloat, we are both in the same ocean. Blessings to you. From your friend in Houston, Texas…David 😎⭐️🥇🥳🎤⌛️🕰🥰🎙

[@PRAR1966]

Didn't dare watch this until it was a 'good' day - on those days it's normally escape the house and immerse in the wild and wonderful world. Cheers Vlad

[@conniepr]

@Vlad Vexler I've been trying to find the video where you mentioned this movie on Netflix "UNREST" I found it and watched it. Thank you for pointing it out. Really enlightened me to ME.

[@meeexxxxX4]

Thank you for everything you put out Vlad. I follow you on twitter and find your ME Diaries to put feelings and experiences into words that I could never could articulate myself, in such a beautiful way. They make me feel so seen. Thank you, seeing and appreciate you and sending peace.

[@takoykakest]

Two years I am struggling with depression and anxiety. There was a period when I simply couldn't not work, but even stand up from my bed and eat something. Of course most of people around me can't understand how it is. They said: you just to man up and do it! and another shit advices. So thank you for your supportive words.

[@PandemoniumMeltDown]

Prejudice seem to be an automatic reaction when people just can't or wilfully chose to not focus on learning, understanding and be empathic and supportive. Some just switch to denial and compleasancy as the easy route and go back to being selfish. I chose to learn and act with respect. I wish you all the best.

[@takoykakest]

@@PandemoniumMeltDown Thank you. I chose the same way.

[@hilarymurray7800]

Thankyou, God bless!

[@S_Eglington]

I would imagine you have a full time job now just reading comments on your videos. Thank you for the content.

[@VladVexlerME]

Ha ha i can still mostly keep up, but I consult, do philosophy, and now do KZbin - all these three things have to fit into about 4 hours per day.

[@VladVexlerME]

I think I lied! It’s 3!

[@axl1002]

@@VladVexlerME You need to marry, it's the only way to become true philosopher :D

[@PandemoniumMeltDown]

@@axl1002 Is that what's happening to me? 😅

[@nieketholen9419]

You are such a loving kind and intelligent man. I learn a lot from you. Especially to continue to have faith in humanity

[@philmartin7474]

Thank you for your compassion, we all can fight through this together🕊👍✨🌹

[@little_yarn_squidlet]

💙 Thank you

[@VladVexlerME]

Pleasure

[@shapirodeadking5012]

love u bro. God bless you and your family and everyone on the planet

[@deborahdobson7676]

Thankyou 😢

[@VladVexlerME]

Pleasure

[@rosiemitchell1078]

Thank you Vlad, acknowledging you too.

[@tillrassbach]

Thank you. Needed it - again - today.

[@CodCats]

my mom got covid months and months ago but it's still like day 1, extreme exhaustion all day and horrible malaise. she's up and looks okay 60% of the time but is in bed probably 16 hours a day, and some days are worse than others but sometimes a bit better where the malaise edge is off from 100% to 85-90%... but the exhaustion is disabling she can't work can barely walk, on best days can make a sandwich!! crazy!! they told her there's no treatment and the doctor calls every 2 weeks and just says ill check on you in another 2 weeks. she had 3 phizer vaccines 54 years

[@england8331]

Big heart big words...Thank you :)

[@salama1172]

Look into Medical Medium information for explanations and treatments that no one else has. It’s eye opening. Good luck and God bless.

[@DavidJBradshaw]

Thank you 😢

[@Vidis88]

Thank you man! Bless ya!

[@ameliaboucher598]

Thank Vlad

[@lindyupton2996]

Thank You. Question: How did you handle the loss of cognition emotionally? I know I'm lucky since I can still function-just. Losing my ability to think and remember consistently has been the worst part of this whole long covid experience. the pain, fatigue, dyspnea, etc I can deal with. Loss of my cognition has me terrified.

[@LeTrashPanda]

tDCS helps.

[@avachristie8010]

Thank you ❤

[@catherinecherniak8197]

❤

[@TheGuerillapatriot]

Raaaaaaaaah! Raaaaaaaaah! Arrrgghhh! Thank you.

[@wzupppp]

Hey Vlad, I recently experimented with water fasting. After 4 days my symptoms diminished by about 90% I believe this has helped me.

[@TheBushRanger.]

Did you have joint pain man?

[@wzupppp]

@@TheBushRanger. yes

[@TheBushRanger.]

@@wzupppp interesting, on day 1 of a fast, my joint have been clicking and popping since covid. I really hope the fast can clear that pain and the noise up. Im only young and joint issues are covid related no doubt.

[@wzupppp]

@@TheBushRanger. my joints did hurt really bad. I still have long covid but my joints have improved a lot. I should do another fast but its really hard after day 2

[@funkymonkey8777]

❤❤❤

[@catherinecherniak8197]

hello Vlad. first of all, thank you for sharing your soul (albeit mostly via your mind) with the world. brave, that. i have watched your videos with a sort of deja vu. we have much in common. i have had me (fm/cfs, etc etc) since 1985. long covid since 2021. my ba is in russian lang and lit. though i am not religious, i did a partial ma in theological aesthetics at notre dame, where theology and philosophy are deeply rooted together. partial bcs of catastrophe. i have written some rather rogue ethics/metaphysics. i did a partial mfa in creative writing, again partial bcs of catastrophe. still, i live and still, i write. i wonder, by way of dialogue, would you be interested in reading a short story explicating overwhelming dynamic suffering?

[@SlpBeauty333]

I'm on a new medication for my rare arthritis and my specialist mentioned that they are testing it as a treatment for long COVID. It's called Xeljanz and it's a different drug class called JAK inhibitor. Clinical trials might work out for some people. I'm so sorry to hear that so many are suffering too. My chronic pain is also invisible but easily shown by a blood marker. There is no cure, only treatment for symptoms. It's hard. It's been hard for 12 years. My Dad just figured out how sick I am because it's a medication that I'll need for the rest of my life? Jesus, Dad? How did you not see it before? I was on a different medication and ended up literally collapsing with no warning. He saw that, he took me to surgeries. I've had breast cancer twice and that was a walk in the park compared to being chronically ill for so long. Also if you've never heard of Spoon Theory, Google it. For some reason YT destroys my comments with links sometimes. It's an essay on explaining what it's like living with chronic illness. Love from NYC ❤️

[@PandemoniumMeltDown]

Thank you for this! I wish for your Prince Charming to come and kiss your pain away! 😘

[@SlpBeauty333]

@@PandemoniumMeltDown Thank you so much, you're so sweet! I spent some quality time with my true love yesterday. Staring up at the stars and enjoying my hot pretzel with mustard. It was so lovely.

[@conniepr]

There was another documentary I believe I had started watching a while back but never finished it. I barely started it and something took me away from it and now I can't remember the name of it. It started with an S....Sambia or something like that, about a Dr in Syria if my memory is right. What was the name of it? If you remember.

[@PandemoniumMeltDown]

😘

[@true_riley007]

Why are you saying all people that ME Is the same as Longcovid

[@sloth6247]

❤️