A health update from Vlad (ME/myalgic encephalomyelitis)

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[@debb1137]

Oh, Vlad, thinking of you and hoping with all my heart that you get better. 🙏❤️

[@luminyam6145]

Same, love you Vlad.

[@PragerFenster]

Big hug from Germany, dear Vlad. So sorry you are going through these really challenging times. 😢🫂

[@andrewwoodgate3769]

Much love to you

[@kevinhoque6365]

I had ME for many years. It began with catching a bad flu, that seemed to never leave (post-viral fatigue). This fatigue went on for years - sometimes awful other times more manageable. At points I could barely walk, talk, or function. Near the very beginning, my GP ordered a blood test for me. It did not show anything out of the ordinary. However, my doctor did make one comment. He said something like, "Your T4 is somewhat low and your TSH is a bit high.". I asked him what this meant. He told me that both values were in the normal range. He would just need to perhaps monitor them. I asked him if these readings could be in any way responsible for my symptoms. He told me no. That was the end of that conversation. Several years later, I was still suffering. I was racking my brains and the Internet trying to figure out what ME was all about. ME to me seemed like a catchall, something like dermatitis. Not a precise explanation of a pathology, merely a description of unexplained symptoms. At this low point I remembered the conversation that I had with the doctor all those years ago. I realised that I did not know what low T4 and high TSH meant. Doing a little internet searching I discovered that these were symptom of hypothyroidism. I searched further to determine what the symptoms of hypothyroidism was. I found a list of symptoms. Looking down the list was an Oh My God! moment. The list of symptoms was relatively long. But I noticed so many that I suffered from with my ME. A day or two later I called up my GP and explained to him that I wanted to try out a low dose of thyroxine. I reminded him that he had mentioned my thyroid levels years ago and that I had googled the symptoms and it looked like a good match. He was not too happy to entertain me, but I was dogged and eventually he gave in. I was lucky. Many people in my situation are blanky told no and get no farther. My doctor reluctantly prescribed me 3 months supply of 50mcg of thyroxine. He warned me that if this worked I would be on this medication for the rest of my life. I told him that I would gladly take a pill for the rest of my life in order to feel normal again. So I started taking the pills. After a few days, nothing was happening. I thought that probably this was not the solution that I was hoping for and that the doctor was likely right. On the morning of day 5 of taking the pills, I awoke feeling very rested and also with a feeling that felt very alien to me. It took me many tens of seconds to work out what this alien feeling actually was. I was feeling warm and snug. In that moment, I realised that I had not felt this warm snug feeling for many years. The strangest thing is that I did not even realise, up until that moment that I had been missing this. My life was transformed from that day. For the past 7-8 years I have taken this pill every day and I do not have ME. This is my story. I do not know how many other people are in the same situation as me, in the UK and around the world. I personally know a few less lucky ones. My advice is check your blood tests for your levels of T4 and TSH. If T4 is low and TSH high, but both are in the "normal" range, this might mean that thyroxine could help you too. NHS GPs will likely go out of their way to not allow you to try thyroxine. You will need to be dogged. If they will not help you, try going private. Do not give up. What could you lose? If the pills work, you take them for the rest of your life and you may be cured. If they do not work, you stop taking them? I hope this helps someone. All the best, Vlad.

[@ak5659]

As someone who has dealt with hypothyroidism i could write a book on it. But i'll keep it brief here. Everyone has a 'normal' that is usually somewhere in the normal range. It runs in my family and we all have a normal TSH of about 1.0. If my TSH is at the upper end of 'normal' like 3.8, I'm practically in a coma! Some people also do not convert T4 to T3 in a normal way and need extra T3. Hope this helps.

[@BennyGeserit]

So Doctors can be ruled by their own confirmation bias as in "the science does not support", or the DSM says x and y and z, as reasoned by patient intuition, may be outside a Physician's innate skill set. Western Doctors are healers like any healers and commercial corporate medicine has vaunted them to cult-like status. There are many examples of this for say when Doctors want to put patients on Statin drugs or cholesterol medications. Patients may find a lifestyle work around or curb certain consumption behaviours but the medicine is the commercial proactive choice and presented as only credible option. In this above example the medicine is the defacto solution but is never reasoned to be the correct course of treatment. I wish Vlad could find a simple adjustment as he sounds like he is in a scary predicament and our vast knowledge of medicine is so far failing him. Nice to see Vlad your keen mind used to be so resilient. I wish you Vlad the best in hope for recovery.

[@MuirgenRaz]

❤❤❤

[@WeirdWizard97]

Your courage is inspiring. You are in my prayers.

[@adeschannel7435]

Thinking of you, Vlad.

[@richardoldfield6714]

Vlad, I'm wishing you much improved health.

[@MLG552]

Living with this disease is so hard. and when you speak of the neurological MS type symptoms I so get it! The older I get the worse my baseline becomes. I am terrified of Covid and am living isolated; I never go to anywhere indoors unless it is a doctor and I have even cancelled those appointments because no medical offices mandate masking. For those of us who are disabled/chronically ill the additional layer of worry related to Covid adds so much to the stress already present with the uncertainty of myalgic encephalomyelitis. I hope that you can get back to baseline.

[@runristaren]

Your voice is much appreciated Vlad, I sincerely hope you'll get better soon!

[@fredrikottosson3427]

"Mental health means being able to dance with it and seeing that its part of life" Well put 👍 im rooting for u vlad

[@garethmorgan3665]

Thinking about you Vlad. Praying for your strength.

[@rachelatwood9555]

OMG! I'm so, so sorry things have taken a turn for the worse, but am forever amazed by how phenomenally you are able to take it all in stride. ❤❤❤

[@alexandercarlandresen6448]

Thank you for the visdom you share for free. God bles you😢

[@mattsteinle2182]

Vlad: As someone who experienced many of these symptoms during early middle age and eventually recovered, I can only say that your prolonged struggle, now exacerbated by Covid, is tearing my heart out.

[@Bananajoejoe84]

It blows me away every time I see how strong you are - you are kind of my role model in these things. I wish you all the best 🙂

[@AndyInSE8]

“Mental Health means being able to dance with it and seeing that its part of life too” Beautifully said, Vlad. Sending all my love and best wishes to you, and hoping that better times come soon ❤

[@rogercrettol7166]

sorry to see the threats on your -already reduced - well-being. Lots of love from your community ... your voice is important to us.

[@SanderBessels]

Not much we can do, but send you lots of love… You’re an amazing human being. Hang in there! ❤️

[@MsTwister57]

I'm so sorry that this is happening to you. I do hope you have someone with you as you tackle this. Praying that you will begin to finally heal from this terrible illness Much love

[@begr_wiedererkennungswert]

Oh ********* ********, that's such a ****** state. Sending much much 🧡.

[@daiakunin]

Sending love and support from the USA to you Vlad.

[@nancynoe4148]

Sending love and prayers for your improved health Vlad. Our world needs your clarity and depth of thought. Hugs

[@kernowpolski]

Our prayers and hopes go out to you Vlad - you show such bravery - you makes us proud and humbled. Much love xxx

[@noelgregan247]

Thinking of you Get well soon

[@renater.540]

Praying that you will get better soon. Much strength and courage🙏❤

[@buzzukfiftythree]

I’m so sorry to know that you’ve been hit by Covid on top of ME. I haven’t had Covid but I’ve had ME for decades and find that, as I’ve got older, any concurrent virus or bacterial infection seems to affect me far worse and for much longer than before I had ME. That might just be an age thing but I don’t believe so, it’s been happening since my mid 30s. Oddly, if a get a cold, I get a period of relief of ME symptoms, but crash badly afterwards. I do hope you begin to feel better very soon because I know how depressing it can be to feel so ill and struggle to see the light at the end of the tunnel.

[@vanettevanhuyssteen5548]

Heartbreaking to hear this update, Vlad. Thinking of you daily, hoping and playing that improvement in your health will come soon. Sending ❤ ❤and 🫂 🫂 to you, from Cape Town, South Africa. 🇿🇦

[@quantumpeep8305]

As a fellow ME sufferer I wish you a speedy recovery from this downward spiral

[@DoloresJNurss]

Thank you for modeling courage in the face of adversity!

[@dag2273]

Sorry to hear about these additional symptoms, hope they will pass. Take care!

[@tinycroft1184]

Sending so much love and heartfelt prayers 🙏❤️🙏❤️🙏

[@stephanbaumeister4507]

A gentle hug and lots of love for you

[@CF_NeverForget]

I hope you will feel better soon! A big hug, Vlad! ❤

[@ikeameltdown8012]

I wish you well, Vlad.❤

[@MultiCugel]

Very sorry so much is getting worse for you Vlad. Typical making this video to help others too. Sending you best wishes for recovery.

[@_amalfitano]

Thanks for sharing your experience. I hope that with time these problems will ease for you. I had stabbing pain in my heart constantly for about 6 months and then intermittently for another year. Sad but not surprised it's affected you this way.

[@ChrisEkstedt]

Most concerned that you have someone checking on you daily and helping you. Please let that be true. Big healing (I hope) hug from NC. With love.... 🧡💛🌻 (I have noted lately that people around me getting Covid lately are having a hard time recovering ..daughter included. I do hope your recovery goes better than it is now)

[@macromicromusic]

Hey Vlad, I just wanted to add another voice of empathy for what you’re going through, and a sincere thanks for enlightening/educating about ME. For whatever it may or may not be worth, I’m sending you good vibes from Los Angeles, wishing your waters to get smoother than they were yesterday.

[@xavierisrael3320]

We love you Vlad stay strong

[@tyhg22]

So sorry to see you in this poor state Vlad. Your perception and sanity are enormously important to me and thousands more.

[@ReinhardScheibe]

Dear Vlad, I hope you will be getting better soon. KZbin and the world are better places with you in them.

[@bertcuypers7243]

I wish you well Vlad !

[@selguerra]

Oh, Vlad, I'm so sorry to hear about your worsening health condition. I see a great man never giving up, but I feel your pain. We love you, Vlad ❤❤

[@andrewday4911]

Greetings from Wales, Vlad, I'm thinking of you: I remember the worst times I had with ME in 1991, but at least then COVID hadn't happened. I'm sending you sincere empathy and hoping you start to feel at least a little better very soon!

[@Bill-Hicks-ashtray]

You're right.. Struggle and suffering is a part of life. It's remembering that so is joy, pleasure and love.. It's a bundle deal, this life.. Feel better Vlad

[@shereenwingo4390]

My dearest Vlad, you are in my daily thoughts, my friend. You have become an integral part of my life, and I am grateful to receive your philosophical wisdom as you grow as a baby public intellectual. I have walked a horrible health journey, which included toxic chemotherapy, so I can appreciate your suffering. I am so honored to be part of your beautiful community, and I wish you brighter days ahead, my dear one.

[@YourNeighborTororo]

My thoughts are with you, Vlad.

[@xmoose9]

Jesus it's scary to listen to that happening to you. But actually encouraging how you're holding up during suffering and even manage to share positivity. We need you Vlad and I hope you will get to feeling better and getting your energy back and rid of the pain

[@gwishnev]

Thank you for telling us exactly what's going on with you.

[@goldenlady9231]

Vlad, sending loving kindness and compassion your way 🌼🌻❤️🧡🌺🌼

[@DarkestAlice]

I am so sorry, Vlad, to hear your health is not improving. I wish you all the best for an improved condition. Take good care of yourself. 🤗

[@msaudreylee]

That sounds awful. So sorry you have to go through this.

[@Julia-Richter]

Thanks, Vlad. Please keep us updated.

[@pamelajaye]

It seems to me in the US they call it chronic fatigue and my goodness that's really underplaying it. I can't even find the right word now. They really need to come up with a better word in this country for this condition.

[@Navymom77]

With the greatest sincerity & hope prayers for healing of your body & regaining of strength & functionality 🙏🕯️💕

[@scotthilderman6365]

You have people around the world that are hoping things get better from here and some are crossing there fingers. Not sure if that saying is common in Britain, but some of us older people in Canada still use it. 🤞

[@ChiarelOD]

Oh Vlad 😢. It sounds terrifying. I send you lots of love from France

[@adrianward5795]

❤and positive energy vibes Vlad

[@meshelsgrover2064]

I’m so sorry to hear about these new symptoms. I really hope you improve soon. Sending my best wishes for recovery. X

[@sheilamargaretwardstoriesa494]

Wishing you all the best.

[@SL-sd3sg]

Please feel much better asap ❤️❤️❤️❤️❤️❤️

[@shiraseskai3021]

You got this

[@stirbjoernwesterhever6223]

The best wishes from Berlin für you.

[@karenbarto5057]

Sending fortifying energy and wishes that this shifts direction toward steady improvement soon 💜

[@bellbookcandle3051]

Oh Vlad... this is truly concerning to hear! Of course, my mind immediately flies to what could possibly be tried to help matters - antivirals, whatever they gave Jimmy Carter after he was last diagnosed, just any wild guess it grasps at. I realize though that you're already aware of all these & may have even tried them. I guess this is an automatic reaction when someone you care about is battling something the way you are. I've been a chronic pain patient for over 40 years now, & you have given me so much inspiration in the way you continue to relate to your own challenges.💙 Like everyone else in your "beautiful community", I will be keeping you in my prayers & close to my heart. I couldn't wish more for a person to regain their health (or at least a tolerable degree of it)! Sending you so much love, from the American Midwest (Indiana)! 🙏🫂

[@nl1733]

That sucks so much it puts a black hole to shame. I hope hope hope it gets better Vlad. Best of all to you ❤

[@jtlowen5023]

So sorry to hear that you are having such a difficult time. I found acupuncture helped my ME. I really appreciate your insights on Ukraine and Putin.

[@shirleythurston4213]

Sending you many wishes and prayers for you to feel completely better as soon as possible, Vlad ❤

[@Vyse-r3p]

As someone who's been struggling with ME like symptoms and long Covid for some time now and waking up at 3 am with chest pain and thinking my heart is going to pop like a balloon I want to say your videos and past ones are very helpful in my journey. Once Iget past the Orban like reaction to the symptoms and start to think productively rather than relying on the gut reactionary response. I can't quite remember what I need if presenting to the hospital but I carry a note in my pocket now. thank you Vlad. Please get better, you are precious to the world. I hope you are receiving the best of care and taking the best of care.

[@jonmulholland4336]

It’s easy for me to say this, but please keep strong if you can. You are valued enormously

[@Shadow-7295]

I also suffer from debilitating chronic health issues. Your videos are truly inspiring. Much respect for sharing your experience.

[@ArseniyaBlackMetal]

Sorry to hear that.😢 I hope that you feel better soon.

[@davidgroom5059]

♥

[@JB-mb1qf]

Dearest Vlad, sending you gentle love …with angry thoughts for the crazy dance you ( this beautiful soul ) have to experience…Love, Julia

[@tobiasruland4553]

Lots of love to you ❤❤❤❤❤❤

[@PeppermintPatties]

Bless you, dearest Vlad. Thank you for educating me about ME. I wish you love and health. 🙏❤️

[@petrahanstein7749]

A big hug for you ❤

[@SailorGeorge]

wishing you well, pal. stay strong ❣

[@bramsanjanssan4908]

Your courage, spirit and intelligence can never be taken away from you.

[@lovetrees1423]

Much love and a big tree hug for you, Vlad🌳❤️‍🩹🌳❤️‍🩹

[@chepulis]

Wishing you well.

[@rednaxrednax1499]

May you get better days again soon!

[@huwedwards839]

You really have my deepest sympathy (ME wrecked my life in my late 20s). Vlad, you are a wonderful person. Don't give up.

[@criscruzparra2243]

Big, big gentle hug dear Vlad.❤and lots of love

[@gabrielad6000]

I’m so sorry, Vlad… I hope you will recover very soon. 🙌🏻🙌🏻🙌🏻🙌🏻🙌🏻

[@erinmcdonald7781]

I’m so glad you’re sharing your experience with ME and COVID because people need to understand how real and serious these conditions are. Physics girl, Dianna, who has severe long COVID has also shared when she can. Hopefully the additional attention will bring more research to help both of you recover. But for now I’m praying that your health turns around from this draining episode. Your resilience and candor are inspiring. I pray for your comfort and healing. Much respect and love! 💜✊🦋

[@loismason7043]

Dear Vlad , so sorry your symptoms are worsening . Sending you ‘healing thoughts’ . Thank you for taking the trouble in the midst of your health crisis to explain so carefully , lucidly & with such great calmness what you are experiencing . This is a great help to those of us with similar health issues who benefit from a calm , measured approach to our own symptoms, without diminishing their level of seriousness. Occasionally, in certain situations I wish I could be more ‘histrionic’ about my condition , and want to say to the person listening who listens unconcernedly because I appear so calm, “ Read my lips , I really am quite ill !” . I’m sure you have measures in place should your condition deteriorate suddenly - it’s the unpredictable nature of ME (&similar conditions ) exacerbated by superimposed post/long Covid symptoms that we as patients, health care professions & as a society are learning about as we go along . Your clear, calm commentaries will stand as a significant contribution to the lived experience body of knowledge needed to support ongoing diagnosis, treatment and patient care of this composite condition.

[@brigitte2217]

Much love from Germany dear Vlad ❤ God bless you 🙏

[@corinnewebb6424]

Sending best wishes and prayers for a speedy recovery. Lots of love Vlad. ❤

[@horrisnorris6478]

Sending lots of love, Vlad

[@lubicakotmanikova755]

Greetings from Slovakia. Praying for you and for bettering this difficult situation.

[@JuliettaRabens]

I am so sorry you are facing these health issues. You are so important to your ‘beautiful community’. We care deeply and wish for your recovery. ❤️‍🩹

[@avnostlga]

Love your fortitude.

[@kbmw494]

Prayers, positive energy, positive vibes, love ❤, positive thoughts...... Big hugs.

[@loraineharnisch4027]

I cannot tell you how sorry I am to see you have to struggle so very much. You are such a beautiful person and I am keeping you close in thoughts and prayers my dear friend. Stay strong Vlad. 💖💖💖💖🙏🙏🙏💖💖💖

[@marykilgarriff3550]

Good health to you from Ireland 🇮🇪.

[@fernandajones2652]

I'm very sorry. I hope you get better soon

[@thomasinaw9814]

Dear dear Vlad, I am so sorry to know of your suffering. Sending healing prayers. 🙏

[@dennistate5953]

Praying for you constantly, Vlad.

[@rodfarva6749]

Vlad, have you in my prayers🌸I cannot fathom what you are going through, they have the leg wraps that help with blood circulation and beaded , weighted items that you can microwave to help with muscle ache and pain. I would whisk it all away for you, if possible. I can only take away the inspiration that you give, thank you for your words!!!