Post-Covid ME/CFS | Covid-19 Survivor Diaries Episode 12

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  • เผยแพร่เมื่อ 18 พ.ย. 2022
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    / survivor_diaries
    Hi! We're Morgana and Jaco. When Covid-19 started spreading where we lived in 2020, we began documenting and sharing stories of Covid-19 survivors to spread awareness about the disease. But, we decided that wasn’t enough. We wanted to show how Covid-19 has impacted people across America. So, we packed up our New York apartment and moved into a 19’ trailer. 414 days, over 40,000 miles, 4 flights, and over 70 campsites later, we have now interviewed over 190 survivors in 50 states. In our documentary film series, you’ll get to know some of them and their stories. And you’ll hear from experts who answer our questions about this virus as we drive through the heart of the outbreak across America.
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ความคิดเห็น • 83

  • @svenlundergard1
    @svenlundergard1 8 หลายเดือนก่อน +29

    It's downright SHAMEFUL that doctors are STILL telling people it's all in their/our heads. Yea...having to stay in bed or in a wheelchair was really on our Treasure Maps. I have so much empathy for these young women. Well done Documentary. Thank you for helping us get the word out on this mystery condition.

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  8 หลายเดือนก่อน +2

      True…it’s downright shocking and so many are fighting the battle alone. I really hope that research brings more light on these chronic conditions. Thank you for your kind words and for watching!!

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  7 หลายเดือนก่อน

      Thanks for watching! Curious what other content would you be interested in seeing on this channel? More info about Long Covid or survivor stories on other topics?

  • @Rainbowsandswirls47
    @Rainbowsandswirls47 หลายเดือนก่อน +5

    35 years with M.E. after the Hep B vaccine, I was a health care worker. Every day is a battle, the NHS has been an even greater battle, people's wilful ignorance still infuriates me, I have no confidence in doctors now 😢

    • @aalliaandreadis5109
      @aalliaandreadis5109 17 วันที่ผ่านมา

      I too was injured from that same poison back in 2000... Got autoimmune urticaria, guttate psoriasis, scabies and eventually hyperthyroidism. Was lucky because the condition was mild and I came across Chinese traditional medicine which cured me a few years later within a few months. I didn't expect it and I never worked with a practitioner, I just took a standard formula for all five systems on my own. Detoxing the liver was key. Once that poison was out, the body rebalanced. There is always hope. The good thing was that I never took another poison shot again. Shame that most of us learn the hard way and it's a real tragedy that defenceless babies' brains are destroyed daily by white coats who bully their parents into consenting.

    • @Rainbowsandswirls47
      @Rainbowsandswirls47 16 วันที่ผ่านมา

      @@aalliaandreadis5109 That's interesting about the liver detox and amazing you got some recovery 😊🦋

  • @evalehmann5837
    @evalehmann5837 ปีที่แล้ว +35

    Thank you for this... dont lose hope. Here in Holland the goverment has put 28 million into research for ME CFS. And germany 10 million into clinical trials for medication on me cfs.

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  ปีที่แล้ว +1

      Wow that’s great news! Thanks for sharing. Please keep us posted!

    • @elianotate4960
      @elianotate4960 11 หลายเดือนก่อน +1

      Thanks needed this today

    • @loveliveshine
      @loveliveshine 8 หลายเดือนก่อน +1

      Wow wonderful to hear great news!! Thank you for sharing

    • @einbisschenwasvonjenem
      @einbisschenwasvonjenem 3 หลายเดือนก่อน +2

      I am dealing with it until today by approving my mental skills, use flower essences and homeopathy, develop a huge portion of black humour, and improve my own subliminal videos, since months I also experiment with morphic fields and sometimes I view videos of other that have been healed. I like the channel of 'life with Kyle'. I hold on the possibility that I have to go through all this for getting the opportunity to have new experiences. I don't know if I once will be healed. I AM 56 now and having this condition for 1 and a half year. It's not easy, I am often bedbound, but hey I am still there 😂🎉❤

    • @davidkruse4030
      @davidkruse4030 3 หลายเดือนก่อน

      That’s a drop in the bucket. They spend billions on cancer research

  • @MrHappyBats
    @MrHappyBats ปีที่แล้ว +24

    It's been 3 years for me, I just want my life back. I want to be there for my children.

  • @abbyarmstrong-green7200
    @abbyarmstrong-green7200 6 หลายเดือนก่อน +13

    Yeah, it's definitely a grieving process.😞

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  6 หลายเดือนก่อน +1

      Sorry sounds like you can relate too well! Thank you for watching.

  • @oaybar007
    @oaybar007 3 หลายเดือนก่อน +12

    So many of us have been suffering for years with me/cfs and even getting a diagnosis is a fight. Even if diagnosed, you're still on your own. We support one an other and keep fighting for progress. Thank you for your work and curiosity. Onward!

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  3 หลายเดือนก่อน +2

      Thank you for watching! Do you think we should share versions without music for folks with me/cfs?

    • @renaissance5300
      @renaissance5300 หลายเดือนก่อน

      I have had lyme disease for 12 years got treated but am still sick ws using bicillin then there was a shortage also have longhauler covid horrific

  • @emilieboisclair1326
    @emilieboisclair1326 5 หลายเดือนก่อน +14

    I also have long Clovis /ME and bedridden for 2 years, i just can’t walk anymore and I’m struggle to go to toilet by myself, I’m 29, that’s a terrible disease

    • @mudslinger888
      @mudslinger888 4 หลายเดือนก่อน +1

      Ive done relentless testing for 15 years with ME, and decades having a longevity hobby ie I took it seriously and lived a very healthy life until I was struck, and I was very athletic, yoga, meditation etc. what helped me most: deleting simple carbs. Being in ketosis, at least half time or 3 mo on, 3 mo off, amazing; big midday torso sun enough to maintain a 10 even in winter. Astounding, but primary for me to keep muscle is a grass fed ruminant based diet, with some fruit n veg but I never miss even a few oz of red meat. If I miss a day I feel muscle wasting. Nothing gives me as much true energy and strength for an adrenaline soaked body as these. I covered my face at times but now I’m sun powered; I can keep going about as slow as a healthy active 90 year old. My dad is 87 and has more strength than I now do. But Ive found how to melt the brain fog off. Also no seed oils.

    • @tomsale5142
      @tomsale5142 2 หลายเดือนก่อน

      ​@@mudslinger888Sarah myhill regime

    • @Ladybird22373
      @Ladybird22373 13 วันที่ผ่านมา +1

      O bless you , I had it for a year & half , I started to tell my self a different story to the one I had being telling, a story of this being my life .
      Your body can not heal in stress mode . Only then did I start to slowly recover

    • @tomsale5142
      @tomsale5142 13 วันที่ผ่านมา

      @@Ladybird22373 do you have hypomobility

    • @Ladybird22373
      @Ladybird22373 13 วันที่ผ่านมา

      @@tomsale5142 no not now

  • @HappyCatastrophy
    @HappyCatastrophy 3 หลายเดือนก่อน +5

    I am going in to my 4th year of this. My life is absolutely nothing like what it was. Thank you for this. It is helping me understand what is happening to me.

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  3 หลายเดือนก่อน

      So thankful it’s helpful for you! Quick question: Would you like versions of these without music?

  • @toneyfree7179
    @toneyfree7179 5 หลายเดือนก่อน +7

    By far hardest thing that I faced in my life, long covid was terrifying , it was minutes at a time ,
    I pray and hope everyone who's suffering finds the way to get better

  • @johnqualls5990
    @johnqualls5990 4 หลายเดือนก่อน +5

    I shook just like the young woman and still have a fever. It’s been almost two years now. Finally found two doctors that take me seriously here in Germany. I still have a long road ahead, and it’s very hard to pace myself. Thanks for these videos! For those struggling I wish you all well.

    • @marcelloceccarelli4195
      @marcelloceccarelli4195 3 หลายเดือนก่อน +1

      Dopo 20 giorni dalla seconda dose di vaccino mio fratello lo abbiamo trovato steso per terra morto io ho pensato subito al vaccino tutti venduti

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  3 หลายเดือนก่อน

      Thanks for watching! How have people responded to Long Covid in Germany?

    • @mariaseidi4023
      @mariaseidi4023 หลายเดือนก่อน

      Please try probiotics ,fermented food , kimchi, NATO,Kefir,in Ásia fermented food is very used ...

  • @Bigheartrolling
    @Bigheartrolling 19 วันที่ผ่านมา

    Hi. I just found you. I am the founder of the Solo Streaming Sisters. I’ve struggled with chronic fatigue for 11 years with my diagnosis of RA/Lupus & Fibro. In Feb 2020 I was traveling, I began getting more fatigued and sick. I think I had Covid without knowing it, no testing at that point. I couldn’t take care of myself. I thought I was going to die.
    Since then my CFS has gotten worse and some days I only sleep 10 hours but always low energy. My Airstream has kept me going and has been my safe haven. I know I’m better than some, but what I show others is only 5 minutes in a day. It is horrible . But It’s only recently I was desperate and began to seriously be my own advocate. It’s horrible though. I haven’t worked, lucky enough to have lived off my inheritance and now I’m holding onto what I little I have. My Rheumy told me it’s a symptom of my fibromyalgia… nothing he can help with. Oh and that I was hormonal middle age. It’s horrible to feel no one believes me. And feel left to live out your life in bed. I respect all who is in this documentary and hope we all can find relief.

  • @mudslinger888
    @mudslinger888 4 หลายเดือนก่อน +6

    I stumble on these as I have ME for 15 years. I bet there’s a lot of good videos about this, but many of us with ME will never know. - because we have PENE and adding extraneous, unnecessary noises to talk is too hard for my brain to filter without triggering an episode. Yet this horrible fad remains. Science told us decades ago, how harmful it is having to multitask the brain even for a normal person. I made it two minutes before my stomach and gut went south, then vagal, nerve, pain grips… i’ve thought many times of doing an ME video with just pure clear talk and no annoying soundtracks added. We cannot filter! Some aren’t as bad or haven’t yet made the connection brain exertion does; it’s huge. Please do more videos but without adding anything! Tysm

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  4 หลายเดือนก่อน +1

      Thank you for sharing! That’s really great advice. We’ll definitely keep that in mind.

    • @tomsale5142
      @tomsale5142 2 หลายเดือนก่อน

      Unfiltered sound is also a symptom of ADHD autism genes for CFS fybromyalgia with heds fow which I have all the clue SPD as a child

  • @LindaD02
    @LindaD02 13 วันที่ผ่านมา

    I just stumbled upon this episode and am now scrolling through channel.
    I am 3.5 years in. PASC (Long Covid) MECFS POTS. Hashimotos. Psoriasis. Asthma. It’s amazing these shows are out here but the gaslighting is still going on. It’s upsetting.

  • @vanessaejc
    @vanessaejc หลายเดือนก่อน +2

    In the Philippines where there is no healthcare system to start with, everything is out of pocket when you work. So all those feelings of extreme exhaustion post covid have to be ignored. People and healthcare providers just dont know because the other diseases need as much attention. 😢😢😢 So I just have to deal with a poor quality of life at my supposedly peak of my life.

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  หลายเดือนก่อน +1

      Thank you for sharing! Fascinating to hear how other countries are responding to Long Covid. So I take it there is little to no support for long Covid patients in the Philippines?

    • @vanessaejc
      @vanessaejc หลายเดือนก่อน

      It would be helpful to ffup CoVid pxs 3 yrs post infection

  • @Ladybird22373
    @Ladybird22373 13 วันที่ผ่านมา +1

    I got Covid in 2020 , it lasted a year & half , it was the worse period of my life

  • @Philfalki
    @Philfalki ปีที่แล้ว +6

    Great work wow! Dealing with CFS too

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  ปีที่แล้ว

      Thank you Philipp! There's a new episode that's a follow-up to this one coming out on Wednesday. You'll be able to watch it here: th-cam.com/video/Iy5WHLOBELY/w-d-xo.html

  • @allahuakbar3810
    @allahuakbar3810 ปีที่แล้ว +8

    Hi how are you now?I can't walk in street. I can only 300step a day. AFTER COVID CHRONIC FATIGUE 2 years into long covid

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  ปีที่แล้ว +1

      So sorry to hear you are going through that! You're not the only one. If you haven't already seen it, you can also watch the follow-up episode to this one here where one of the women featured in episode 12 makes a major life decision that significantly improves her symptoms: th-cam.com/video/Iy5WHLOBELY/w-d-xo.html

    • @Kilodank1
      @Kilodank1 2 หลายเดือนก่อน +1

      How are you doing now ? I'm so sorry you're going through this . I can only take 200-300 steps at a time before I have to rest for hrs before I can get moving again if I push I crash hard . I'm at 1000 steps a day

  • @jadiaaleksandraviciute-mt8cw
    @jadiaaleksandraviciute-mt8cw 8 หลายเดือนก่อน +8

    There is one big question, have they had vaccine? And did they get sick before or after?...

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  8 หลายเดือนก่อน +7

      They got Covid before the vaccine was available.

    • @naomiwebber536
      @naomiwebber536 6 หลายเดือนก่อน

      ​@SurvivorDiariesOfficial Before the Covid injections which do not stop the spread and after childhood immune system destroying immunisations 🙄

    • @davidkruse4030
      @davidkruse4030 3 หลายเดือนก่อน

      You need to stop consuming misinformation.

    • @Kilodank1
      @Kilodank1 2 หลายเดือนก่อน +3

      I never got the vaccine and I'm pretty much disabled now . 31 and I look more fit then most of the population. 26 months of bed and housebound plus other symptoms you wouldn't believe

    • @tomsale5142
      @tomsale5142 2 หลายเดือนก่อน +1

      ​@@Kilodank127 years for me after a fall check out if your hypermobile heds autism ADHD undiagnosed until last year genes for it rccx gene theory my father had CFS and my auntie s my late mum has severe ms

  • @MP-uo6qd
    @MP-uo6qd ปีที่แล้ว +4

    Try Ampligen but it's expensive

  • @tomsale5142
    @tomsale5142 2 หลายเดือนก่อน +1

    The 5 percent recovery us incorrect who follows up the people who recover i no for a fact my father wasnt asked and he recovered with couple part remission s

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  หลายเดือนก่อน

      Thanks for watching! Glad your father recovered 😀

    • @tomsale5142
      @tomsale5142 หลายเดือนก่อน

      @@SurvivorDiariesOfficial I have it though but I haven't it's pain my worst now.thoygh found out I had heds asperger's ADHD genes for it mine came after a fall my father's nafter a virus

  • @RingJando
    @RingJando หลายเดือนก่อน

    @25:20 if there is a God . . . ♥

  • @stellarhope6954
    @stellarhope6954 7 หลายเดือนก่อน +3

    whats from covid, whats from the cvid vaccine?

    • @SurvivorDiariesOfficial
      @SurvivorDiariesOfficial  7 หลายเดือนก่อน +4

      Watch the film and pay attention to the dates when they caught Covid…you’ll be able to figure it from there.

    • @RingJando
      @RingJando หลายเดือนก่อน

      Don't be an idiot . . . oops it's too late & people like you are always late for the party - wake up stella!

    • @pedrosmith4529
      @pedrosmith4529 26 วันที่ผ่านมา

      Everry single time the stvpid comment.

  • @StephanieDefinitely
    @StephanieDefinitely 16 วันที่ผ่านมา +1

    I was actually diagnosed with fibromyalgia and ME/CFS as a 12 year old, back in 1992. I was learning about pacing and taking my pulse and going to physical therapy instead of being a carefree kid. I’d been having migraines and chronic pain since age 9. Don’t recommend!
    Then in 2020 at age 41 I was hospitalized with Covid pneumonia. Even after I was discharged and finally went back to work 2 months later, I was having the worst ME/CFS symptoms of my life plus what I now think is POTS (though I still haven’t gotten a doctor to put that down as a diagnosis… in fact they haven’t even put ME/CFS in my chart even though I told them I was diagnosed as a child!) Then less than two years after that, I was diagnosed with ovarian cancer which absolutely made it worse.
    Anyway. Thanks so much for sharing these survivor stories - it makes me feel less alone. 🥲