Vicki HP

@VicHP55

Current interests are advocating for ME/CFS Research and Treatment, Photography, and Politics.

Martinez, CA
Vrijeme pridruživanja: ožujak 2015.

Tweetovi

Blokirali ste korisnika/cu @VicHP55

Jeste li sigurni da želite vidjeti te tweetove? Time nećete deblokirati korisnika/cu @VicHP55

  1. proslijedio/la je Tweet
    prije 23 sata

    The real number of sufferers is unknown due to erroneous beliefs. This is real, serious, debilitating yet adequate funding has yet to be given. Why? Why?

    Poništi
  2. proslijedio/la je Tweet
    5. velj

    Today I have been in an ME crash. It makes one feel very out of it. I have found myself repeatedly pausing to ask myself 'am I still alive?' It's a ridiculous question because clearly I am still alive, but there are moments when the brain properly spaces out and is unsure 😅.

    Poništi
  3. proslijedio/la je Tweet

    447 days since I last went outside. Ill for almost 19 years. 39 years old. Completely bedridden. Can no longer stand or walk. No medical help. CBT did nothing. Graded exercise made me worse. This is the reality of

    Poništi
  4. proslijedio/la je Tweet
    prije 24 sata

    I don't think people understand what counts as exertion. My home help was shocked that sitting chatting to her while she prepared a meal for me wiped me out for days.

    Poništi
  5. proslijedio/la je Tweet

    ME patients experience a worsening of symptoms following ANY activity. This is called Post-exertional malaise (PEM), or ‘payback’. This means that if I choose to spend a few minutes talking to a friend, I’m likely to ‘pay’ for it for hrs, or even days afterwards

    Poništi
  6. proslijedio/la je Tweet
    prije 18 sati

    With ME, either you fit it into your minuscule energy budget, or you don't get to do it. How would you like to stop every activity that matters to you, Francis Collins? 13M is Read:

    Poništi
  7. proslijedio/la je Tweet
    4. velj

    Regarding psychological involvement with , one common element that I've observed in every ME patient I've interacted with: Grief. This is from the loss of their job, income, social life, hobbies, sports, medical insurance, family, friends, and some case the ability to walk,

    Prikaži ovu nit
    Poništi
  8. proslijedio/la je Tweet

    M.E. is not a rare disease. It effects anywhere from 15 - 30 million people worldwide, yet it receives a fraction of the research funding allocated to male pattern baldness. The neglect of ME patients is one of the biggest medical rights abuses of our time

    Prikaži ovu nit
    Poništi
  9. proslijedio/la je Tweet
    5. velj

    The misconception that people with M.E are malingerers is baffling to me. I have never known a bunch of tougher people in my life. You have no idea the mental strength & grit it takes to live every day like this. We deserve so much better than stigma & ignorance.

    Poništi
  10. proslijedio/la je Tweet
    prije 24 sata

    Having ME is having a psychiatrist tell my partner that I must be exaggerating my illness and for her mental health she should either force me to do more or leave me (Dw, she explained all faults with the PACE trial in great detail. Psych backtracked 😆)

    Poništi
  11. proslijedio/la je Tweet
    Poništi
  12. proslijedio/la je Tweet
    prije 23 sata

    Im 23 and I'm living my life stuck in bed and on a couch instead of living my life. I should be saving up to start a family, working. But that all on hold for god knows how long, maybe forever.

    Poništi
  13. proslijedio/la je Tweet
    5. velj

    To those who say are faking. You’re right, we are. Every day that we fight, we’re faking that we’re not breaking. Every time we smile & laugh we’re faking that we’re not in agony. Every time we distract ourselves we’re faking that we aren’t terrified.

    Poništi
  14. proslijedio/la je Tweet
    prije 23 sata

    I don't know what it's like to be healthy. Sick with ME since 5-6 & 24 now. Give me a chance, please. I'm very ambitious, creative, compassionate & would love to contribute to society. My whole world is a dark room.

    Poništi
  15. proslijedio/la je Tweet
    prije 24 sata

    Four weeks after we returned from our honeymoon, my wife fell severely ill with ME/CFS. We only had one month together as a married couple. She has been bed-ridden ever since.

    Poništi
  16. proslijedio/la je Tweet
    prije 24 sata

    When I had cancer, I received skilled medical attention which cured me. When my heart became faulty, I received skilled medical attention which is helping enormously. When I got M.E. I got no help at all, we are just left to rot in our beds for decades on end.

    Poništi
  17. proslijedio/la je Tweet
    prije 24 sata

    to all around the world suffering from my heart goes out to you 💙 to those like myself, a carer watching daily your loved ones missing out on life I send a hug. This illness is so cruel 💔

    Poništi
  18. proslijedio/la je Tweet
    prije 23 sata

    1. You get ill and lose everything. 2. Everyone is gone. 3. Doctors don't know what is wrong with you. 4. You find out what is wrong and want to fight for research, better understanding of illness etc. 5. You are too sick to fight. Who will fight for ME?

    Poništi
  19. proslijedio/la je Tweet
    5. velj

    This situation of barely funding an illness that is devastating so many lives is no longer acceptable. Our needs must be addressed, our weakened voices will be heard.

    Poništi
  20. proslijedio/la je Tweet
    prije 23 sata

    is a debilitating and life changing illness. There are millions of us suffering around the world yet we still get labelled as lazy or ‘just tired’. This must change, this WILL change

    Poništi

Čini se da učitavanje traje već neko vrijeme.

Twitter je možda preopterećen ili ima kratkotrajnih poteškoća u radu. Pokušajte ponovno ili potražite dodatne informacije u odjeljku Status Twittera.

    Možda bi vam se svidjelo i ovo:

    ·