Whats is ME? me-pedia.org/wiki/Myalgic_encephalomyelitis ME QOL study - www.healthrising.org/blog/2015/08/05/chronic-fatigue-syndrome-worse-mulitple-sclerosis-cancer/ Maeve story - th-cam.com/video/10hCNt6ajSE/w-d-xo.html Vlad after sitting up for yesterday's Chat th-cam.com/users/shorts6vDRjxecjfQ?si=M3iU1JIGlIFZTKDC Vlad's ME diary on Twitter - search the hashtag VladsMEdiary on Twitter Vlad's main channel - th-cam.com/users/VladVexlervideos Vlad's Chat channel - th-cam.com/channels/n7XHZiW6EUgSuxItybLLMg.htmlvideos Vlad's philosophy channel - www.youtube.com/@VladVexlerPhilosophy/videos 00:00 intro 00:33 ME 02:18 Disability vs suffering 02:59 Stability vs volatility 03:37 Safety vs unsafety 05:02 Vlad's COV exposure 07:09 ME and hospital tips 13:35 Vlad's ME COV interaction 3 weeks on 17:52 Broad emotional worries 21:17 Concrete worries 23:15 Emotional tips
Regarding hospital tips, 100% take heed of what Vlad's saying here. I would add that these things are best reiterated to every person giving you care, be prepared for them to be surly and treat you like a Karen (you likely would too in their shoes, but nevertheless-), any new person giving you care, assume they have no knowledge of your condition, assume nothing has been communicated relating to your care that you might have told someone else. Try to be clear, calm and authoritative when you think something will cause you pain or suffering or when you feel you need something. You will likely feel you are being a nuisance to the staff but that is a function of underfunding, understaffing and under training, not at all your fault. Best wishes from a hospital porter.
I once had a bad complication because of an operation and ended up in the IC. I know now what I should have done, but it didn't occour to me at the time. Communication was hard because of a ventilator. I needed to do physiclal stuff (and I undrstand why), but I could feel that my body couldn't handle it. Endless discussions on paper and nurses who made strange decisions which only made it worse. Because my cortisol levels and adrenaline were going through the roof, I finally got medication against anxiety. I need to say it worked, not completely, but these kind of conditions can trigger anxiety with me. Next time around, I'm not going to do a thing until somebody who's daily work it is to work with ME patients is standing next my bed and is weighing in on any discussion of what should happen to me. Although I feel seen by my brothers, they clearly didn't have a clue either. I can't blame them and I don't, but you know, the IC is like a prison. The bed is more comfortable and the people are nice, but you're closed off from the whole world. I was in a relationship back then and she was there every day. I'm still grateful for that
Hi Vlad. Person with Kundalini syndrome here. Much of your advice and tips almost exactly tranposable to those of us dealing with kundalini syndrome. Especially your advice on managing hospital staff etc. by not mentioning, as much as possible, anyrhing they won't be able to relate to. And especially not to get unnecessarily sucked into psychological/psychiatric rabbit holes! With deep appreciation for your excellent advice 🙏🙏
Thank you, Vlad, for explaining ME for 12-year-olds. This helped me a lot to better understand how to communicate with people who have to live with ME (and long Covid). It is amazing, how you manage to find enough strength to communicate with us. Thank you! I wish you well. Lots of love 🤗
It astounds me when I see people with stage 4 cancer going to Disneyland because they want to “enjoy life while they can”. People with serious ME can’t think about such a thing. It shows how difficult ME is.
@@suzannstrohmaier2578 Including the asked to leave even though people are actively bullying her? Right. He lasted 14 hours off of my own block. Just when you think it's safe, hmm?
Thank you for the nice and clear talk, Vladislav. I have ME about 16 months, it was started by covid and the subsequent stress and hassle of moving (including three tons of books). I've had every possible neurology and rheumatology test and ME is all that remains. The doctors don't believe it though, as I am being treated for bipolar disorder. They think I'm depressed or a hypochondriac. But I know depression and this is something else. Before that, I was a hyperactive traveler and I wrote technical papers for a living. Now I work part-time as a night watchman and I lie the rest of my life away. Sometimes I get so sick I wish I was dead. And I know it could be worse. Thank you for what you said about hope. As an (Orthodox) Christian, I actually feel the same way about hope. I just have the added vision of God playing 6D chess in order to save as many people as possible. And the resulting belief that God allowed what is happening to me to happen for my benefit. Hang in there and continue to help people not only understand the intricacies of the political world (if you publish a book, I'll be among the first to buy it!) but also the pitfalls of ME. PS: Current political events are challenging, but please try to revisit Nietzsche sometime!
When I was calm in hospital they accused me that I was just after free holidays. And should take Nivea for the petechiae (skin bleedings from brain inflammation). State of the art Neurology. 😄
Jajaja that brain fog interfering with keeping a grasp of what you've just said a second ago is so familiar - it's so frustrating, and when it's very bad can be frightening, but it's heartening seeing someone else managing it with humour. Hugs and solidarity!
Same here! Some days my brain fog is so severe that I think I could have young onset dementia instead of ME and it scares the sh*t out of me. I forget sentences I myself pronounced less than a minute ago or my own thoughts from just a moment ago. I easily lose track of my train of thought, have trouble recalling simple memories. Also problems with complex thought and reasoning, with abstraction and trouble focusing in a single task. Thank God on other days my mind is much clearer and I kind of go to a more normal state. A question I have: do you ever feel apathy and/or anhedonia, or some kind of emotional numbness at least on some days?
Can I add a personal tip for the healthy watchers? Practice to negotiate and receive support from other people now, even if it’s difficult. It’s more difficult to learn this while you’re unable to remember your name. See that you have at least a few people in your proximity who can handle difficult and hopeless situations. Otherwise there will be no one there to apply Vlad's last tips to.
After 22 years of ME....adding Covid to it...I have become an absolute isolationist and although I take the vaccine, it has really lowered my baseline.
@@suzannstrohmaier2578 my emotions can be like a rogue pup slipping out the back gate (only WAY less "cute" :-s ). Too often it is only "with hindsight" that I realize how much more prudent it would have been to help the pup "burn off that energy" inside the back yard and not in the neighbor's flower bed!
Sorry you’ve had such a bad reaction with Covid, Vlad. I hope the weird stuff settles back to baseline for you soon. I too had a strange pressure in chest + HR shooting to 170 a couple of weeks ago. I had had a virus (not covid) but your video makes me realise it may have been the virus + ME that triggered it. I avoided hospital (called 111) because I knew I needed rest that I wouldn’t get there. The clinicians and staff I dealt with were all great (NHS Scotland), and you’ve made me realise part of that may have been that they could tell I was calm (not a panic attack), and generally positive despite my fear over what was happening, and they believed me that I know *a little* about my condition. So yes, those are definitely great tips I’ll bear in mind in future! There is so much that I don’t know about my own ME still. I wish I had a specialist I could speak to like you have, you’re lucky to have that support. It’s only since discovering you and the ME community on Twitter a couple of years ago that I began to piece together all the random weird stuff as being part of my ME. Thank you for your continuing work to educate us ALL about it. 💛
Unfortunately in the UK ME has been treated as a psychological illness too often, when there is clear evidence that it is biomechanical in nature. I have had to treat myself, and am fortunate as I have 'mild ME' and have adapted my work so I can pace myself. Of course it means I don't earn much, and can't get benefits, but at least I don't feel ill all the time. By carefully pacing and resting I can do pretty much everything I would like to do, just not as consistently or without breaks. My ME started after Mono (glandular fever). I have my own protocol for 'crashing' after exercise which involved supplements that help make ATP - D Ribose, COQ10, and magnesium. Covid and other viruses often trigger several weeks of extreme tiredness, so I try to avoid getting them by using a viral nasal blocker (Viraleze) when in crowded situations. I also get my vitamin D levels up. If I get covid I use the FLCCC protocols, and use famotidine, Ivermectin, Quentin, Zinc and nasal rinses and mouthwash. I review the scientific papers on treatment regularly. I don't trust big pharma. My experience of GP's and the NHS is that they have no clue about ME. You're better off doing your own research if you can. Fun fact - most ME sufferers are alcohol intolerant. This is a clue to the problem of energy production in the cells found in ME, as the liver takes a large amount of energy to process toxins. If you stick an ME sufferer on an exercise bike and measure VO2 max levels they might look 'normal'. Do it 24 hours later, and their ability to use oxygen has crashed along with their strength and fitness. This may take days or weeks to recover. This is completely different to almost any other illness. It's not 'just in the head', its a real biomechanical illness.
Thanks for taking the time to post this despite the state you're in! My symptoms were very similar in January 2022. Sharp chest pain and high heart rate lying down lasted for 6 months. I also have had concussions (bad enough to need to take recovery time from work) and had similar head feeling for about a year after. It's terrible to hear you experiencing that, but validating, since I was on the edge of being dismissed by specialists. Your breakdown of dimensions of chronic illness along axes of disability, suffering, volatility, and safety is excellent. I've been using this a tool of explanation to others since you posted it. I have (non religious) faith that you will get past this.
I too appreciated that classification of Vlad's of the dimensions of chronic illness. For me the volatility is the hardest for others to understand and most often brings the remark: "but you look ok to me".
Here from the chat channel. I'm glad I searched out your M.E. channel. Firstly, its added enormously to my extreeeeeemely rudimentary understanding of what it's like / symptoms etc, and learning anything new makes me feel better than contrariwise, even though I have no-one in my circle going through it. (I have a friend with LC, whose childhood guardian (her aunt) had M.E. from the late 80s, and so now I feel a curiosity into reading up a bit about auto-immune and post-viral,conditions in general.) Secondly, I am even more in awe of the volume and quality of material you produce on the chat and main channels. And thirdly, another reminder to be kind and gentle in general, and with people with health issues in particular, is good for me I think. So, I'm sending you whatever traces of love & support, and gratitude, that I can scrape up from my somewhat withered and dessicated heart :) ❤ PS also puts my personal grumbles and complaints about the world into perspective, which is also very healthy.
Thank you. Having had a similar experience, I agree with everything you said, I even came up with atypical MS too. Hope you get away without any lasting scratches from Covid.
I am a girl who pays attention. I also know the difference between right and wrong. Good and bad. I knew there was a medical issue, but I wasn't sure which. But I've always been sympathetic and understand that you are a brilliant mind in our time that comes to us with a body that is failing somehow. This should never mean you are lesser of a person. Thank you for explaining, and I do hope that people in the community that have rattled you with stupid crap like sipping tea ro many times will stop the crap and grow up. ❤
Thank you so so very much, when I listen to you I feel understood & uplifted & further educated more than other resource avenues!! Hoping for you to return to a better baseline & functionality!! I admire your coping abilities! Am in a crash myself-find hope & inspiration from you! Blessings!
Thanks for the really helpful tips, Vlad. i don't have ME, but suffer from a rare autoimmune disease that involves a lot of chronic fatigue, swallowing, and inflammation issues. I absolutely dread new symptoms or flair ups that involve going to the hospital. It's a nightmare trying to explain something that hardly any of the medical professionals have heard of. Sending love to you and the rest of the beautiful community.
Hello. It sounds like ME/CFS or Fibro what you discribe. I am in the process of being diagnosed, MS isn't either discarded yet. I also have fatigue, muscle pain and spasms, problems chewing and swallowing, chest tension, headaches and brain fog that can be sometimes quite severe. Do you know exactly what autoinmune disease you have?
@drimhighify hi, yes I have hypocomplementemic urticarial vasculitis syndrome, this causes facial swelling, hives and numerous systemic symptoms, chronic fatigue is really common in autoimmune disease. Getting a diagnosis for any illness that sometimes causes vague but often debilitating symptoms can be tricky and frustrating. This is why it can take a long time to get diagnosed. Wish you all the best.
Thank you for this heartfelt discussion. It helps to have an embodied, firsthand experiential narrator to walk us through this baffling -and sometimes waffling - terrain of disparate symptoms….I often feel like I’m some kind of hypochondriac….This self-tyranny likely exacerbates whatever symptoms I happen to be dealing with. I appreciate your empiracle/common-sense notion of what faith means to you: the ability to bridge today with tomorrow. Bit by bit we toddle on. God bless you as always. 💜🌻💜🌻💜
I would be so scared: What is happening? What does it mean? Will this resolve or get worse? So sorry this happened, Vlad. I’ve never heard someone describe their illness as rationally as you do.
Thank you very much for sharing Vlad! I think most of us are not even aware of what we don't have to deal with, and it is important to raise awareness. All the best to you and everyone who has to suffer from chronic illness. ❤
Hi Vlad, nice to see you recovered from the horrible state. I'd add that we need to be gentle with ourselves, both in the hard sense of taking care of ourselves and not pushing beyond sustainable capacity, but also in the soft sense, accepting the situation and struggle as a life challenge. This means taking it on with pride and determination, chucking all of societal expectation and Should & Shame into the garbage where lots of it should've been before already. Accept your situation, adapt by remaking your life so that you can make yourself a stable situation and then one that can start floating upwards to improvment. Affirm that your situation is a struggle for life, skip all normal expectations and embrace the fight with all the determination you can manifest. Analyze what's happening to you and learn how to predict and adapt to the changes and effects while retaining control of the process. Assert your suffering and your needs in simple and distinct terms, to yourself and to others. Negative people who refuse to accept can just bugger off to the excrement pile. My experience is that with confidnt acceptance and clear and simple communication, most of reasonably smart people are very receptive and understanding. A majority of doctors and the absolute muppets of the world are going to be a problem of course, so it's key to avoid spending time and energy on such unless it's crucial. If that's the case, then make sure to have the capability when you choose to take the fight, and push hard when it's time. Own the situation, take the reins and drive change as much as possible instead of just being changed, and dragged down. This is you, you are the fighter of a massive challenge. This is your life, embrace it and be all you can still be. Say YES to life.
Even if it is just the 5 best minutes of your day, I still want to say I'm glad to see you sitting up and looking well (even if that might change). All the best!
@@begr_wiedererkennungswert it’s tricky as the rules are not transparent and not applied consistently. If they were transparent it would be clear where the lines are. At the moment there are several issues I could talk about that would endanger all the channels. Even though I am one of the most responsible and best placed people on the platform to discuss them. It’s easier to talk about ME without C. With C there is a risk of being reported by trolls with then an out of their depth YT employee somewhere in the world needing to make a decision on it.
I'm grateful that you share this separately from your other channels. I have a sort of chronic illness that most people don't really understand, either, not as varied but still very crippling at times and very painful, so I have some ability to empathize, especially when it comes to complications with other things and uncertainty about the future and quality of life... you're a good man; I hope it gets better. I'm trying to learn from your example.
Thank you so much for this video, Vlad! You explain things that I feel very deeply but have not quite been able to put into words and that just feels incredibly validating. As someone with ME, I also got covid and did unfortunately get set back quite a lot, and I relate to the experience you describe in many ways. I'm really sorry you caught it aswell, but I really hope your setback and worsening of symptomes/new symptomes won't last! Thank you again for using the energy you got to make this video, I think anyone who watches, whether they have ME or not, can learn something!
so, it happened to you, my worst nightmare, getting Covid when you have ME. Luckily my ME kept me at home, but I'm still not too confident going outside, although I think that I should be able to live my life (meaning I'm not always going to pay attention to it). I'm sorry to hear you need to go through that tunnel wondering what the other side is going to look like. Your demeanour is better than last time and that is good to see. I guess it might take a while, but I hope you will get back to the ME Vlad you used to be. ME is enough, you don't need long-Covid as well. I don't need to tell you to take it moment by moment. We never know how we are going to feel when we wake up and what is going to happen for the rest of the day. Having that even in a worse way is ... (no words). Thank you for your thorough and relentless attention you give to the community, beautiful Vlad
Thank you for collecting the energy to share your knowledge. Your calm and kind way to explain has helped many around the world.. don't you ever forget! :)
Thank you for this video. It is helpful to hear the framing of the volatility of symptoms as this has been hard for me to communicate when have these upticks mostly seemingly during/after an infection or reinfection now. Very confusing and changeable even within hours or minutes and seems the longer I have this disease, the more I understand and so does my family. Appreciate you and your videos. Take care and sending much love from Vermont USA.
Thank you for sharing so much of yourself with us. I do hope your work for us is not too exhausting although I I know you value it as we value you. Much love ❤
I can’t directly relate, but I can indirectly. One of our little ones has hypothalamic hamartoma. Pretty rare, almost unknown outside of the handful of tertiary hospitals. Glad we live in a capital city. We can certainly relate to that letter. We needed it too in the first year of our child’s life. Anyway, much love from 🇦🇺🇦🇺🇦🇺.
I have air hunger that is not respiratory or cardiac. Feels like my brain is suffocating. I can't get drs to understand this isn't anxiety but my broken brain.
Thank you for sharing this! I would also appreciate tips and little things that help you get through a normal day. Still trying to figure it out and as soon as I think I figured some sort of sustainable path things go wrong.
I'm glad you're ok now! Writing this from an epsom salt bath. I've found it much safer to say I have health problems, than to say I have chronic fatigue and chronic pain. Also since I've got some objective health problems it's much easier to dismiss the gaslighting people. I had to consider a hospitalization this summer too, I decided it would be more harm than any solutions. Now I got myself a nebulizer and it really helps.
Thank you so much for making this video. COVID hit me so hard after surviving M.E. for 30 years. It was as if aliens attacked my body and affected every organ in some way. It’s been 18 months. I’m slowly getting better and getting closer to ‘just’ having M.E.
Fascinating. I don’t have M.E. But understand the experience of fear when doctors have no solution or diagnosis… but your experience is, how shall we put this… far more interesting and wide ranging.
Hospitals Accident and Emergency Departments cater to those with unstable ACUTE conditions. People with chronic illness don’t generally fit their moulds. People with complex multi conditions need a different system in hospitals
The psychologization you discuss early on is not limited to people who seem nervous, anxious, or female, though you are right to point out those groups are more likely to hear it. Physicians appear to develop this reflex to reach for psychology to explain difficult-to-diagnose patients as overworked medical students and hospital residents. It is simply easier to write a referral for a psych consult when the normal battery of tests return normal results but the patient persists in acting miserable and our doctor has twelve more cases to handle in the next hour than to sit with the patient going over history and tracking down specialists at other hospitals. Then we can add, here in the US, considerations of time spent with supervisors demanding financial productivity, adding another reason to avoid the kind of care people with long-term health issues require, and making that much more likely the inappropriate reach for the psych referral. It is extremely good advice to try to maintain calm in the face of changeable, strange symptoms (though that's not a good defense against being labeled a psych case, I find, at least in the US). Autoimmune diseases of all sorts, as they evolve in us, take on new forms and indulge in new excesses as our living introduces our out-of-whack defenses to new irritations, new attacks (in cases of infection or injury, however mild or intense), and new weaknesses in our bodies needing attention from our distorted immune systems. It does not surprise me anymore as my once-severe and now-reworsening ME and my rheumatoid arthritis and my kidney-destroying hereditary lymph-metabolism-autoimmune break down the barriers between them, attacking my skin or my spine (from years of broken pain management, pain that had been somewhat controlled became much less controlled - for my "benefit" - and worsened everything, changing my chemistry, inflaming my microglia, opening a nervous-system front in my busy self-defense), following any new or old insult or irritation mistakenly attempting to reestablish order in my body. Learning to manage anxiety, stress, and worry about time, projects, and possibilities lost, and not to weigh ourselves down with terrible thoughts about terrible feelings - for people with long-term disease of much severity, these are vital practices, whatever meditations, exercises, visualization, and focus-adjustment practices one finds most helpful. It only gets more important the worse the disease hits a person. I have waited for you to do this for some time, so thank you. You have done a huge service to the community. One more thing I should mention. On the "sorry" notice, there would be nothing wrong with explaining "this is what my doctors suggested for me, and here is how it helped or did not help" and why that proved to be so, if you know. So long as you tell people who think they may have ME or Covid or any other serious illness to seek out professional medical help, and you let people know you are reporting on your own case and your own lessons drawn, and not providing medical advice or pretending to be doing so, you are on solid ground ethically and with regard to the Tube. I do appreciate the reasons for your caution, but I find it helpful to compare different experiences with ME and other long-running illnesses or system breakdowns. Maybe run a small follow-up on that element, if your cold feet warm a bit?
You matter so much to me vlad. I'd give anything to be able to talk to you for a few minutes. You're consistently having similar understandings of the world to that of me and my girlfriend, a few days after we do - I've always thought long covid was a bit of a meme before I watched these videos. I'm not sure how to understand truth even as a PhD student who's very engaged in the world. It's hard to trust yourself in a world that's so atomized Lots of love, Galen
Thank you so much Galen. Do know that I have some consulting hours every month, though they are tiny and expensive. Aside from that I will probably find a way to have very brief chats with some of the audience - so watch out for that if / when my health is better! Warmest to you and your girlfriend! Thank you for being with me.
@VladVexlerME I'll look into it, though on the student salary I am on I seriously doubt that will happen. Mostly I want to throw an idea out to you about American democracy and culture that I want to get your perspective on: I see there as being something very deeply democratic and even somewhat liberal about the MAGA movement that I think even most Americans don't see, especially in 2024. I'm wondering if the diversity and internal multilevel democracy that my country has is capable of 'corrupting' movements that seek its overthrow because, at the end of the day, power is so utterly decentralized and there isn't a story you can tell about the American people based on ethnicity that really can speak to a broad enough segment to win. I have stopped putting Trump in the context of foreign authoritarians because I genuinely don't think that he is all that similar to the erdogans and orbans and modis of the world - he's, to me, far more in line with an American political tradition during times of social and political transformation that goes back to the whiskey rebellion, Andrew Jackson, the liberal republican party after the civil war, Teddy Roosevelt, and Herbert Hoover. I'm not sure if what you call 'post-truth populism' is a political ideology or a political language which has not yet found its voice, but is getting there - just as Andrew Jackson brought some Americans into politics for the first time by speaking to them, and later those people metastisized broader perspectives about the world that were based on a positive construction and truth and democratic norms.
Have you tried high dosage nattokinase for clearance of triggering peptide fragments for a couple of weeks? I tried it post COVID/az dose 1 & it cleared up a lot of stuff including breathing issues, muscle pain & gut issues. Some of those issues were chronic over several years before COVID hit.
I have fibromyalgia. It took more than a year to educate my relatives that I'm not going to be cured. The 'are you feeling better?' got to be so irritating. Thankfully I've been able to sense the beginnings of a flare-up. If the gabapentin doesn't cushion enough I know it's ok to tune out. Brains definitely have too much control.
To me it is beyond strange that a person would be unable to talk but able to give a thumbs up/down or flick fingers-unless their jaw was wired, or they had a tube in the throat or an oxygen mask or something. Also the idea anyone wouldn't be afraid with chest pains is a foreign universe to me. This whole illness is off the charts bizarre. I will say that when someone I know was in PA school he said about people with CFS and Fibromyalgia: "It's just a fancy word for depression." when someone pushed back on that he was like "Well they are bored housewives. They like to be sick and dramatic." To be clear, I don't doubt that ME is a real illness and certainly don't think it only happens to "bored housewives" (talk about sexist). It's just an example of how a person can be perceived as nuts if their illness appears to defy logic. I once knew an African American woman who had celiac with VERY unconventional symptoms. It was never GI symptoms or diarrhea but severe bone pain that appeared in unpredictable places. At that time, most of the medical profession believe all celiacs were dangerously skinny malnourished children with extreme malabsorption and diarrhea and that they were almost all of Irish ethnicity. For her getting a proper diagnosis was a living hell. When some people suggested "Hey there's an outside chance it could be the celiac." her husband looked into it, and decided the reasons his wife "couldn't be a celiac" were all bogus, but she had to pay out of pocket and travel out of state to get the test.
@Scanlonam, when I'm in an ME flare-up my speech is slowed and I become very aware of how much is involved in simply articulating words while just lifting up my thumb would feel relatively easy.
Glad to see this. Haven't checked in on other of your channels lately. Blew way past my baseline months ago and still in survival mode. Sorry you went through all that. Thank you Vlad for this. Edit: sometimes I feel like I need a NASA team to help regulate me but indeed we're on our own.
I have Hypermobile Ehlers Danlos Syndrome and ME is known as a comorbidity. I have often wondered if I have ME as many of my symptoms align , however I tend to be treated more as a mental health patient than a physical health patient. This isn’t helped by the fact that hEDS is also known to cause mental health issues. It’s infuriating being told that your issues are all in your head when you can physically show extreme hypermobility, Kyphosis, 5 fractured vertebrae, POTS and a history of heart attacks.. These things are not in my head 🤷🏻♂️🤦🏻♂️ Iv even been to the autonomics unit in Queens Square.. They could see that there were issues but had no idea what was causing them 😒 It’s no wonder that I have mental health issues when the treatment you receive is constantly so negative and the answers elude all doctors 🤷🏻♂️ I’m currently writing this after spending 36 hours awake as each time I try to sleep my heart pounds out of my chest.. Anyways if you read this Thankyou for doing so and I hope your own battles are not so harsh 👍🏻
Hi Vlad. Have ME, over decade, waintng official diagnosis. Recent covid/chest infpneomonia.Daughter wedding 1wk ago. Today spine injections-degenerative spine. Need faith 🙏 😪
Hello everyone: I'm in the process of being diagnosed with either ME/CFS or Fibro (MS is not entirely discarded yet though). I share all the symptoms you mention you suffer with the exception of tinnitus and bladder problems. I've got a question: do you (or anyone who read this) suffer from periods of feeling "gray" as in not sad but very unmotivated, apathetic, anhedonic and even emotionally numb / blunted? Those periods tend to coincide in me with the periods when my brain fog and memory problems worsen, although not always. It scares the sh*t out of me, as in the worst days I feel like an empty shell. Thank God other days I get back a little bit of pasion for life and some of my natural interest for things I like, and I am back able to connect with people.
The sad part is that medical education does not even seem to work on the problems with doctors and hospitals to which you allude in this video. I'm a physician in a relevant specialty who found herself in a pair of shoes not unlike yours. A+ video...I will spare you the personal anecdotes.....
The letter including your asks and explanations sounds like a great tip, although it is shocking that you'd better keep quiet about ME when being hospitalized. 🫂
Whats is ME? me-pedia.org/wiki/Myalgic_encephalomyelitis
ME QOL study - www.healthrising.org/blog/2015/08/05/chronic-fatigue-syndrome-worse-mulitple-sclerosis-cancer/
Maeve story - th-cam.com/video/10hCNt6ajSE/w-d-xo.html
Vlad after sitting up for yesterday's Chat th-cam.com/users/shorts6vDRjxecjfQ?si=M3iU1JIGlIFZTKDC
Vlad's ME diary on Twitter - search the hashtag VladsMEdiary on Twitter
Vlad's main channel - th-cam.com/users/VladVexlervideos
Vlad's Chat channel - th-cam.com/channels/n7XHZiW6EUgSuxItybLLMg.htmlvideos
Vlad's philosophy channel - www.youtube.com/@VladVexlerPhilosophy/videos
00:00 intro
00:33 ME
02:18 Disability vs suffering
02:59 Stability vs volatility
03:37 Safety vs unsafety
05:02 Vlad's COV exposure
07:09 ME and hospital tips
13:35 Vlad's ME COV interaction 3 weeks on
17:52 Broad emotional worries
21:17 Concrete worries
23:15 Emotional tips
MEpedia contains many errors, including in their description of ME. It is not a reliable source. The same goes for healthrising.
Regarding hospital tips, 100% take heed of what Vlad's saying here. I would add that these things are best reiterated to every person giving you care, be prepared for them to be surly and treat you like a Karen (you likely would too in their shoes, but nevertheless-), any new person giving you care, assume they have no knowledge of your condition, assume nothing has been communicated relating to your care that you might have told someone else. Try to be clear, calm and authoritative when you think something will cause you pain or suffering or when you feel you need something. You will likely feel you are being a nuisance to the staff but that is a function of underfunding, understaffing and under training, not at all your fault. Best wishes from a hospital porter.
I once had a bad complication because of an operation and ended up in the IC. I know now what I should have done, but it didn't occour to me at the time. Communication was hard because of a ventilator. I needed to do physiclal stuff (and I undrstand why), but I could feel that my body couldn't handle it. Endless discussions on paper and nurses who made strange decisions which only made it worse. Because my cortisol levels and adrenaline were going through the roof, I finally got medication against anxiety. I need to say it worked, not completely, but these kind of conditions can trigger anxiety with me.
Next time around, I'm not going to do a thing until somebody who's daily work it is to work with ME patients is standing next my bed and is weighing in on any discussion of what should happen to me. Although I feel seen by my brothers, they clearly didn't have a clue either. I can't blame them and I don't, but you know, the IC is like a prison. The bed is more comfortable and the people are nice, but you're closed off from the whole world. I was in a relationship back then and she was there every day. I'm still grateful for that
You are an awesome communicator, also an awesome person in general. Wishing you good health
Thank you so!
Thank you, as a senior nurse who works the emergency department this was educational
Hi Vlad. Person with Kundalini syndrome here. Much of your advice and tips almost exactly tranposable to those of us dealing with kundalini syndrome. Especially your advice on managing hospital staff etc. by not mentioning, as much as possible, anyrhing they won't be able to relate to. And especially not to get unnecessarily sucked into psychological/psychiatric rabbit holes! With deep appreciation for your excellent advice 🙏🙏
Thank you, Vlad, for explaining ME for 12-year-olds. This helped me a lot to better understand how to communicate with people who have to live with ME (and long Covid). It is amazing, how you manage to find enough strength to communicate with us. Thank you! I wish you well. Lots of love 🤗
He has a heart condition. That's not ME.
It astounds me when I see people with stage 4 cancer going to Disneyland because they want to “enjoy life while they can”. People with serious ME can’t think about such a thing. It shows how difficult ME is.
Thanks Vlad 🙏warmest wishes for everyone out there facing health challenges of any kind. 🌼🌼🌼🌼🌼🌼🌼
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@@suzannstrohmaier2578 Including the asked to leave even though people are actively bullying her? Right.
He lasted 14 hours off of my own block. Just when you think it's safe, hmm?
Thank you for the nice and clear talk, Vladislav. I have ME about 16 months, it was started by covid and the subsequent stress and hassle of moving (including three tons of books). I've had every possible neurology and rheumatology test and ME is all that remains. The doctors don't believe it though, as I am being treated for bipolar disorder. They think I'm depressed or a hypochondriac. But I know depression and this is something else. Before that, I was a hyperactive traveler and I wrote technical papers for a living. Now I work part-time as a night watchman and I lie the rest of my life away. Sometimes I get so sick I wish I was dead. And I know it could be worse. Thank you for what you said about hope. As an (Orthodox) Christian, I actually feel the same way about hope. I just have the added vision of God playing 6D chess in order to save as many people as possible. And the resulting belief that God allowed what is happening to me to happen for my benefit.
Hang in there and continue to help people not only understand the intricacies of the political world (if you publish a book, I'll be among the first to buy it!) but also the pitfalls of ME.
PS: Current political events are challenging, but please try to revisit Nietzsche sometime!
ME is caused by enteroviruses. You can't get it from covid, but you can get CAME (covid-19-associated monocytic encephalitis).
Your a champion, and caring person Vlad. Had no idea about ME. Somehow my pain and suffering seems trivial.
When I was calm in hospital they accused me that I was just after free holidays. And should take Nivea for the petechiae (skin bleedings from brain inflammation). State of the art Neurology. 😄
Jajaja that brain fog interfering with keeping a grasp of what you've just said a second ago is so familiar - it's so frustrating, and when it's very bad can be frightening, but it's heartening seeing someone else managing it with humour. Hugs and solidarity!
Same here! Some days my brain fog is so severe that I think I could have young onset dementia instead of ME and it scares the sh*t out of me. I forget sentences I myself pronounced less than a minute ago or my own thoughts from just a moment ago. I easily lose track of my train of thought, have trouble recalling simple memories. Also problems with complex thought and reasoning, with abstraction and trouble focusing in a single task. Thank God on other days my mind is much clearer and I kind of go to a more normal state. A question I have: do you ever feel apathy and/or anhedonia, or some kind of emotional numbness at least on some days?
Thank you so much for your patience and careful explanation. Thinking of you.
Can I add a personal tip for the healthy watchers?
Practice to negotiate and receive support from other people now, even if it’s difficult. It’s more difficult to learn this while you’re unable to remember your name.
See that you have at least a few people in your proximity who can handle difficult and hopeless situations. Otherwise there will be no one there to apply Vlad's last tips to.
After 22 years of ME....adding Covid to it...I have become an absolute isolationist and although I take the vaccine, it has really lowered my baseline.
Good tip: Don’t waste energy on freaking out repeatedly, you might need it later for breathing.
Excellent advice...I tend to freak out way too easily....good to save that energy for more important functions. 🌻🌻🌻🌻
@@suzannstrohmaier2578 I experimented with all unhealthy kinds of reaction and believe despair is the most energy effective. 😄👍🌻🌻
@@suzannstrohmaier2578 my emotions can be like a rogue pup slipping out the back gate (only WAY less "cute" :-s ). Too often it is only "with hindsight" that I realize how much more prudent it would have been to help the pup "burn off that energy" inside the back yard and not in the neighbor's flower bed!
@solarnaut yes, great analogy...I totally agree 👍
Sorry you’ve had such a bad reaction with Covid, Vlad. I hope the weird stuff settles back to baseline for you soon.
I too had a strange pressure in chest + HR shooting to 170 a couple of weeks ago. I had had a virus (not covid) but your video makes me realise it may have been the virus + ME that triggered it. I avoided hospital (called 111) because I knew I needed rest that I wouldn’t get there. The clinicians and staff I dealt with were all great (NHS Scotland), and you’ve made me realise part of that may have been that they could tell I was calm (not a panic attack), and generally positive despite my fear over what was happening, and they believed me that I know *a little* about my condition. So yes, those are definitely great tips I’ll bear in mind in future!
There is so much that I don’t know about my own ME still. I wish I had a specialist I could speak to like you have, you’re lucky to have that support. It’s only since discovering you and the ME community on Twitter a couple of years ago that I began to piece together all the random weird stuff as being part of my ME. Thank you for your continuing work to educate us ALL about it. 💛
Unfortunately in the UK ME has been treated as a psychological illness too often, when there is clear evidence that it is biomechanical in nature. I have had to treat myself, and am fortunate as I have 'mild ME' and have adapted my work so I can pace myself. Of course it means I don't earn much, and can't get benefits, but at least I don't feel ill all the time. By carefully pacing and resting I can do pretty much everything I would like to do, just not as consistently or without breaks.
My ME started after Mono (glandular fever). I have my own protocol for 'crashing' after exercise which involved supplements that help make ATP - D Ribose, COQ10, and magnesium.
Covid and other viruses often trigger several weeks of extreme tiredness, so I try to avoid getting them by using a viral nasal blocker (Viraleze) when in crowded situations. I also get my vitamin D levels up.
If I get covid I use the FLCCC protocols, and use famotidine, Ivermectin, Quentin, Zinc and nasal rinses and mouthwash. I review the scientific papers on treatment regularly. I don't trust big pharma.
My experience of GP's and the NHS is that they have no clue about ME. You're better off doing your own research if you can.
Fun fact - most ME sufferers are alcohol intolerant. This is a clue to the problem of energy production in the cells found in ME, as the liver takes a large amount of energy to process toxins. If you stick an ME sufferer on an exercise bike and measure VO2 max levels they might look 'normal'. Do it 24 hours later, and their ability to use oxygen has crashed along with their strength and fitness. This may take days or weeks to recover. This is completely different to almost any other illness. It's not 'just in the head', its a real biomechanical illness.
Thanks for taking the time to post this despite the state you're in!
My symptoms were very similar in January 2022. Sharp chest pain and high heart rate lying down lasted for 6 months. I also have had concussions (bad enough to need to take recovery time from work) and had similar head feeling for about a year after. It's terrible to hear you experiencing that, but validating, since I was on the edge of being dismissed by specialists.
Your breakdown of dimensions of chronic illness along axes of disability, suffering, volatility, and safety is excellent. I've been using this a tool of explanation to others since you posted it.
I have (non religious) faith that you will get past this.
I too appreciated that classification of Vlad's of the dimensions of chronic illness. For me the volatility is the hardest for others to understand and most often brings the remark: "but you look ok to me".
@@ChrisEkstedt volatility so hard sending gentle wishes and truly sorry it has been such a tough period 💛
@@_amalfitano non religious faith back at you 💛
@@VladVexlerME Seems you've had a lot of the same Vlad. I find your calm counsel very valuable. 🌻
@@SlpBeauty333 🌻Nice to see you too :-)
Here from the chat channel. I'm glad I searched out your M.E. channel. Firstly, its added enormously to my extreeeeeemely rudimentary understanding of what it's like / symptoms etc, and learning anything new makes me feel better than contrariwise, even though I have no-one in my circle going through it. (I have a friend with LC, whose childhood guardian (her aunt) had M.E. from the late 80s, and so now I feel a curiosity into reading up a bit about auto-immune and post-viral,conditions in general.) Secondly, I am even more in awe of the volume and quality of material you produce on the chat and main channels. And thirdly, another reminder to be kind and gentle in general, and with people with health issues in particular, is good for me I think. So, I'm sending you whatever traces of love & support, and gratitude, that I can scrape up from my somewhat withered and dessicated heart :) ❤
PS also puts my personal grumbles and complaints about the world into perspective, which is also very healthy.
Love to you dearest Vlad.❤
thank you for sharing.
I wish there could be more ME research. As you say, those with ME need to be their own doctors. It feels like we're left to rot.
Thank you.
Having had a similar experience, I agree with everything you said, I even came up with atypical MS too. Hope you get away without any lasting scratches from Covid.
@@begr_wiedererkennungswert ❤
I am a girl who pays attention. I also know the difference between right and wrong. Good and bad. I knew there was a medical issue, but I wasn't sure which. But I've always been sympathetic and understand that you are a brilliant mind in our time that comes to us with a body that is failing somehow. This should never mean you are lesser of a person. Thank you for explaining, and I do hope that people in the community that have rattled you with stupid crap like sipping tea ro many times will stop the crap and grow up. ❤
❤ Very lovely and solid, will use this clip to spread knowledge. Take care V, lots of love
Thank you so so very much, when I listen to you I feel understood & uplifted & further educated more than other resource avenues!!
Hoping for you to return to a better baseline & functionality!! I admire your coping abilities! Am in a crash myself-find hope & inspiration from you! Blessings!
Thanks for the really helpful tips, Vlad. i don't have ME, but suffer from a rare autoimmune disease that involves a lot of chronic fatigue, swallowing, and inflammation issues. I absolutely dread new symptoms or flair ups that involve going to the hospital. It's a nightmare trying to explain something that hardly any of the medical professionals have heard of. Sending love to you and the rest of the beautiful community.
Hello. It sounds like ME/CFS or Fibro what you discribe. I am in the process of being diagnosed, MS isn't either discarded yet. I also have fatigue, muscle pain and spasms, problems chewing and swallowing, chest tension, headaches and brain fog that can be sometimes quite severe. Do you know exactly what autoinmune disease you have?
@drimhighify hi, yes I have hypocomplementemic urticarial vasculitis syndrome, this causes facial swelling, hives and numerous systemic symptoms, chronic fatigue is really common in autoimmune disease.
Getting a diagnosis for any illness that sometimes causes vague but often debilitating symptoms can be tricky and frustrating. This is why it can take a long time to get diagnosed. Wish you all the best.
Thank you for this heartfelt discussion. It helps to have an embodied, firsthand experiential narrator to walk us through this baffling -and sometimes waffling - terrain of disparate symptoms….I often feel like I’m some kind of hypochondriac….This self-tyranny likely exacerbates whatever symptoms I happen to be dealing with. I appreciate your empiracle/common-sense notion of what faith means to you: the ability to bridge today with tomorrow. Bit by bit we toddle on. God bless you as always. 💜🌻💜🌻💜
I would be so scared: What is happening? What does it mean? Will this resolve or get worse? So sorry this happened, Vlad. I’ve never heard someone describe their illness as rationally as you do.
Thank you Vlad and all best wishes, from someone in year three of long covid
I am so sorry...I have a friend with Long Covid...it's horrible. 🙏
Thank you for sharing your journey with us. I hope you feel better soon. Please, look after yourself well.
Thank you Vlad. That was very enlightening.
Thank you very much for sharing Vlad! I think most of us are not even aware of what we don't have to deal with, and it is important to raise awareness. All the best to you and everyone who has to suffer from chronic illness. ❤
Hi Vlad, nice to see you recovered from the horrible state.
I'd add that we need to be gentle with ourselves, both in the hard sense of taking care of ourselves and not pushing beyond sustainable capacity,
but also in the soft sense, accepting the situation and struggle as a life challenge. This means taking it on with pride and determination, chucking all of societal expectation and Should & Shame into the garbage where lots of it should've been before already.
Accept your situation, adapt by remaking your life so that you can make yourself a stable situation and then one that can start floating upwards to improvment.
Affirm that your situation is a struggle for life, skip all normal expectations and embrace the fight with all the determination you can manifest.
Analyze what's happening to you and learn how to predict and adapt to the changes and effects while retaining control of the process.
Assert your suffering and your needs in simple and distinct terms, to yourself and to others. Negative people who refuse to accept can just bugger off to the excrement pile.
My experience is that with confidnt acceptance and clear and simple communication, most of reasonably smart people are very receptive and understanding. A majority of doctors and the absolute muppets of the world are going to be a problem of course, so it's key to avoid spending time and energy on such unless it's crucial. If that's the case, then make sure to have the capability when you choose to take the fight, and push hard when it's time.
Own the situation, take the reins and drive change as much as possible instead of just being changed, and dragged down.
This is you, you are the fighter of a massive challenge. This is your life, embrace it and be all you can still be.
Say YES to life.
Even if it is just the 5 best minutes of your day, I still want to say I'm glad to see you sitting up and looking well (even if that might change). All the best!
Wish TH-cam would allow to share the cut out part too. Most people have no access to any expert at all.
@@begr_wiedererkennungswert it’s tricky as the rules are not transparent and not applied consistently. If they were transparent it would be clear where the lines are. At the moment there are several issues I could talk about that would endanger all the channels. Even though I am one of the most responsible and best placed people on the platform to discuss them. It’s easier to talk about ME without C. With C there is a risk of being reported by trolls with then an out of their depth YT employee somewhere in the world needing to make a decision on it.
Fascinating insights, Vlad. Thanks.
@@MallenBaker thank you friend!
Thank you for sharing Vlad ❤
I'm grateful that you share this separately from your other channels. I have a sort of chronic illness that most people don't really understand, either, not as varied but still very crippling at times and very painful, so I have some ability to empathize, especially when it comes to complications with other things and uncertainty about the future and quality of life... you're a good man; I hope it gets better. I'm trying to learn from your example.
I hope you're feeling better soon
Thank you for shedding light on this as you shed light on everything you talk about!
thank you so much for your deeply thorough and comprehensive explanation of your latest ME journey. Your zen and insightful outlook is so inspiring 💙
@@rachelatwood9555 Rachel it’s very generous of you to attend to this long video. Thank you !!
Sending big love❤
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Thank you Vlad for your interesting blog.. Take Care. 🙏🌹🦋❤️
Hugs & love galore to you, Vlad!
Great work Vlad
Thank you so much for this video, Vlad!
You explain things that I feel very deeply but have not quite been able to put into words and that just feels incredibly validating.
As someone with ME, I also got covid and did unfortunately get set back quite a lot, and I relate to the experience you describe in many ways.
I'm really sorry you caught it aswell, but I really hope your setback and worsening of symptomes/new symptomes won't last!
Thank you again for using the energy you got to make this video, I think anyone who watches, whether they have ME or not, can learn something!
so, it happened to you, my worst nightmare, getting Covid when you have ME. Luckily my ME kept me at home, but I'm still not too confident going outside, although I think that I should be able to live my life (meaning I'm not always going to pay attention to it). I'm sorry to hear you need to go through that tunnel wondering what the other side is going to look like. Your demeanour is better than last time and that is good to see. I guess it might take a while, but I hope you will get back to the ME Vlad you used to be. ME is enough, you don't need long-Covid as well. I don't need to tell you to take it moment by moment. We never know how we are going to feel when we wake up and what is going to happen for the rest of the day. Having that even in a worse way is ... (no words). Thank you for your thorough and relentless attention you give to the community, beautiful Vlad
Vlad, you feel like my buddy, I listen to all that you have to say and I am emphatic with your health issues. We. Are buddies, like it or not.
Excellent information. Very clearly presented. Thank you.
Thank you for collecting the energy to share your knowledge. Your calm and kind way to explain has helped many around the world.. don't you ever forget! :)
Thank you for this video. It is helpful to hear the framing of the volatility of symptoms as this has been hard for me to communicate when have these upticks mostly seemingly during/after an infection or reinfection now.
Very confusing and changeable even within hours or minutes and seems the longer I have this disease, the more I understand and so does my family.
Appreciate you and your videos.
Take care and sending much love from Vermont USA.
Regarding faith and gentleness, you lead by example. I am humbled. Be safe. x
Grateful
So sorry you’ve had this recent experience. Sending you best wishes and prayers 🙏🏻
Thank you for sharing so much of yourself with us. I do hope your work for us is not too exhausting although I I know you value it as we value you. Much love ❤
What a great video!!! Really useful information. Thank you for making this. 💪❤
I don't have ME and I found this video really useful because you explained everything so well, even gave actionable tips to people 👍❤
Thanks, Vlad, for saying the most important words about faith in the most important way.
I can’t directly relate, but I can indirectly. One of our little ones has hypothalamic hamartoma. Pretty rare, almost unknown outside of the handful of tertiary hospitals. Glad we live in a capital city. We can certainly relate to that letter. We needed it too in the first year of our child’s life. Anyway, much love from 🇦🇺🇦🇺🇦🇺.
I have air hunger that is not respiratory or cardiac. Feels like my brain is suffocating. I can't get drs to understand this isn't anxiety but my broken brain.
Thank you for sharing this! I would also appreciate tips and little things that help you get through a normal day. Still trying to figure it out and as soon as I think I figured some sort of sustainable path things go wrong.
I'm glad you're ok now!
Writing this from an epsom salt bath.
I've found it much safer to say I have health problems, than to say I have chronic fatigue and chronic pain.
Also since I've got some objective health problems it's much easier to dismiss the gaslighting people.
I had to consider a hospitalization this summer too, I decided it would be more harm than any solutions. Now I got myself a nebulizer and it really helps.
Thank you so much for making this video. COVID hit me so hard after surviving M.E. for 30 years. It was as if aliens attacked my body and affected every organ in some way. It’s been 18 months. I’m slowly getting better and getting closer to ‘just’ having M.E.
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Vkad, when you do the pain sounds you sound like Atkinson doing bean...
Wishing you better.
Bri
Peace
Thank you is all I can say.
23:14 argh! There are no ME specialists here. (The only specialist in Scotland sadly passed away last year). I wish we could have your tips!
Fascinating. I don’t have M.E. But understand the experience of fear when doctors have no solution or diagnosis… but your experience is, how shall we put this… far more interesting and wide ranging.
Hospitals Accident and Emergency Departments cater to those with unstable ACUTE conditions. People with chronic illness don’t generally fit their moulds. People with complex multi conditions need a different system in hospitals
The psychologization you discuss early on is not limited to people who seem nervous, anxious, or female, though you are right to point out those groups are more likely to hear it. Physicians appear to develop this reflex to reach for psychology to explain difficult-to-diagnose patients as overworked medical students and hospital residents. It is simply easier to write a referral for a psych consult when the normal battery of tests return normal results but the patient persists in acting miserable and our doctor has twelve more cases to handle in the next hour than to sit with the patient going over history and tracking down specialists at other hospitals. Then we can add, here in the US, considerations of time spent with supervisors demanding financial productivity, adding another reason to avoid the kind of care people with long-term health issues require, and making that much more likely the inappropriate reach for the psych referral.
It is extremely good advice to try to maintain calm in the face of changeable, strange symptoms (though that's not a good defense against being labeled a psych case, I find, at least in the US). Autoimmune diseases of all sorts, as they evolve in us, take on new forms and indulge in new excesses as our living introduces our out-of-whack defenses to new irritations, new attacks (in cases of infection or injury, however mild or intense), and new weaknesses in our bodies needing attention from our distorted immune systems. It does not surprise me anymore as my once-severe and now-reworsening ME and my rheumatoid arthritis and my kidney-destroying hereditary lymph-metabolism-autoimmune break down the barriers between them, attacking my skin or my spine (from years of broken pain management, pain that had been somewhat controlled became much less controlled - for my "benefit" - and worsened everything, changing my chemistry, inflaming my microglia, opening a nervous-system front in my busy self-defense), following any new or old insult or irritation mistakenly attempting to reestablish order in my body. Learning to manage anxiety, stress, and worry about time, projects, and possibilities lost, and not to weigh ourselves down with terrible thoughts about terrible feelings - for people with long-term disease of much severity, these are vital practices, whatever meditations, exercises, visualization, and focus-adjustment practices one finds most helpful. It only gets more important the worse the disease hits a person.
I have waited for you to do this for some time, so thank you. You have done a huge service to the community.
One more thing I should mention. On the "sorry" notice, there would be nothing wrong with explaining "this is what my doctors suggested for me, and here is how it helped or did not help" and why that proved to be so, if you know. So long as you tell people who think they may have ME or Covid or any other serious illness to seek out professional medical help, and you let people know you are reporting on your own case and your own lessons drawn, and not providing medical advice or pretending to be doing so, you are on solid ground ethically and with regard to the Tube. I do appreciate the reasons for your caution, but I find it helpful to compare different experiences with ME and other long-running illnesses or system breakdowns. Maybe run a small follow-up on that element, if your cold feet warm a bit?
"Like a 16th Century Hospital", LOL. You give them too much credit! ;) Learned a lot from this video. THANKS! Sorry you go through this.
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You matter so much to me vlad. I'd give anything to be able to talk to you for a few minutes. You're consistently having similar understandings of the world to that of me and my girlfriend, a few days after we do - I've always thought long covid was a bit of a meme before I watched these videos. I'm not sure how to understand truth even as a PhD student who's very engaged in the world. It's hard to trust yourself in a world that's so atomized
Lots of love,
Galen
Thank you so much Galen. Do know that I have some consulting hours every month, though they are tiny and expensive. Aside from that I will probably find a way to have very brief chats with some of the audience - so watch out for that if / when my health is better! Warmest to you and your girlfriend! Thank you for being with me.
@VladVexlerME I'll look into it, though on the student salary I am on I seriously doubt that will happen. Mostly I want to throw an idea out to you about American democracy and culture that I want to get your perspective on: I see there as being something very deeply democratic and even somewhat liberal about the MAGA movement that I think even most Americans don't see, especially in 2024. I'm wondering if the diversity and internal multilevel democracy that my country has is capable of 'corrupting' movements that seek its overthrow because, at the end of the day, power is so utterly decentralized and there isn't a story you can tell about the American people based on ethnicity that really can speak to a broad enough segment to win. I have stopped putting Trump in the context of foreign authoritarians because I genuinely don't think that he is all that similar to the erdogans and orbans and modis of the world - he's, to me, far more in line with an American political tradition during times of social and political transformation that goes back to the whiskey rebellion, Andrew Jackson, the liberal republican party after the civil war, Teddy Roosevelt, and Herbert Hoover. I'm not sure if what you call 'post-truth populism' is a political ideology or a political language which has not yet found its voice, but is getting there - just as Andrew Jackson brought some Americans into politics for the first time by speaking to them, and later those people metastisized broader perspectives about the world that were based on a positive construction and truth and democratic norms.
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Have you tried high dosage nattokinase for clearance of triggering peptide fragments for a couple of weeks? I tried it post COVID/az dose 1 & it cleared up a lot of stuff including breathing issues, muscle pain & gut issues. Some of those issues were chronic over several years before COVID hit.
Vlad I am so sorry youve had this, you do look a bit gaunt, tho in a handsome way ♥︎ Best wishes for recovery.
I have fibromyalgia. It took more than a year to educate my relatives that I'm not going to be cured. The 'are you feeling better?' got to be so irritating. Thankfully I've been able to sense the beginnings of a flare-up. If the gabapentin doesn't cushion enough I know it's ok to tune out. Brains definitely have too much control.
To me it is beyond strange that a person would be unable to talk but able to give a thumbs up/down or flick fingers-unless their jaw was wired, or they had a tube in the throat or an oxygen mask or something. Also the idea anyone wouldn't be afraid with chest pains is a foreign universe to me.
This whole illness is off the charts bizarre.
I will say that when someone I know was in PA school he said about people with CFS and Fibromyalgia: "It's just a fancy word for depression." when someone pushed back on that he was like "Well they are bored housewives. They like to be sick and dramatic."
To be clear, I don't doubt that ME is a real illness and certainly don't think it only happens to "bored housewives" (talk about sexist). It's just an example of how a person can be perceived as nuts if their illness appears to defy logic.
I once knew an African American woman who had celiac with VERY unconventional symptoms. It was never GI symptoms or diarrhea but severe bone pain that appeared in unpredictable places. At that time, most of the medical profession believe all celiacs were dangerously skinny malnourished children with extreme malabsorption and diarrhea and that they were almost all of Irish ethnicity. For her getting a proper diagnosis was a living hell. When some people suggested "Hey there's an outside chance it could be the celiac." her husband looked into it, and decided the reasons his wife "couldn't be a celiac" were all bogus, but she had to pay out of pocket and travel out of state to get the test.
@Scanlonam, when I'm in an ME flare-up my speech is slowed and I become very aware of how much is involved in simply articulating words while just lifting up my thumb would feel relatively easy.
Glad to see this. Haven't checked in on other of your channels lately. Blew way past my baseline months ago and still in survival mode. Sorry you went through all that. Thank you Vlad for this. Edit: sometimes I feel like I need a NASA team to help regulate me but indeed we're on our own.
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Good to see you back. 💙🧡💙🧡
@@suzannstrohmaier2578 Thank you so much Suzann 🙂🧡
@@Julia-Richter 🥀
Plus those are GREAT emotional tips! 🌻
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We really have blinders on when it comes to infectious disease and the most vulnerable in society being in a permanent lockdown.
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Very informative
Best wishes Professor Vlad
I have Hypermobile Ehlers Danlos Syndrome and ME is known as a comorbidity. I have often wondered if I have ME as many of my symptoms align , however I tend to be treated more as a mental health patient than a physical health patient. This isn’t helped by the fact that hEDS is also known to cause mental health issues. It’s infuriating being told that your issues are all in your head when you can physically show extreme hypermobility, Kyphosis, 5 fractured vertebrae, POTS and a history of heart attacks.. These things are not in my head 🤷🏻♂️🤦🏻♂️
Iv even been to the autonomics unit in Queens Square.. They could see that there were issues but had no idea what was causing them 😒
It’s no wonder that I have mental health issues when the treatment you receive is constantly so negative and the answers elude all doctors 🤷🏻♂️
I’m currently writing this after spending 36 hours awake as each time I try to sleep my heart pounds out of my chest..
Anyways if you read this Thankyou for doing so and I hope your own battles are not so harsh 👍🏻
Hi Vlad. Have ME, over decade, waintng official diagnosis. Recent covid/chest infpneomonia.Daughter wedding 1wk ago. Today spine injections-degenerative spine. Need faith 🙏 😪
3:33 "what kind of waters are you in?"
seems a beautifully "open" question
(assuming the person likes being in some kinds of water B---) )
🙏🏼🧡🙏🏼
Hello everyone: I'm in the process of being diagnosed with either ME/CFS or Fibro (MS is not entirely discarded yet though). I share all the symptoms you mention you suffer with the exception of tinnitus and bladder problems. I've got a question: do you (or anyone who read this) suffer from periods of feeling "gray" as in not sad but very unmotivated, apathetic, anhedonic and even emotionally numb / blunted? Those periods tend to coincide in me with the periods when my brain fog and memory problems worsen, although not always. It scares the sh*t out of me, as in the worst days I feel like an empty shell. Thank God other days I get back a little bit of pasion for life and some of my natural interest for things I like, and I am back able to connect with people.
Vlad is wearing a red shirt!!!! Not his usual white!!! You should try wearing more colors. Wearing white all the time doesn't do much for you.
Chur Bruh 😁
Sorry!
Somebody who can create such a long, clear and well structured video can‘t be that ill!
The sad part is that medical education does not even seem to work on the problems with doctors and hospitals to which you allude in this video. I'm a physician in a relevant specialty who found herself in a pair of shoes not unlike yours. A+ video...I will spare you the personal anecdotes.....
such a neurotic mess, your poor insert significant other here.
The letter including your asks and explanations sounds like a great tip, although it is shocking that you'd better keep quiet about ME when being hospitalized. 🫂
❤❤❤