We Are Not Defined by Their Prejudice
Whitney Dafoe
by
2w ago
Laziness is not the opposite of being sick. How have we come to this place where if we show any lack of productivity we are terrified of being labelled "lazy" and therefore not legitimately sick? …how do we start to re-frame the prejudice against us ..read more
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ME/CFS/LC is an Ever Changing Journey
Whitney Dafoe
by
3w ago
…I realized that ME/CFS/Long Covid is not a series of steady states that suddenly switch from one to another…ME/CFS/Long Covid is an ever changing journey and we never know where it will take us. We can do the best we can and no more ..read more
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Hurting Ourselves for Awareness Days
Whitney Dafoe
by
1M ago
The fact that severe patients have to hurt themselves to advocate for the world to treat Long Covid and ME/CFS patients like human beings is a damning testament to the state of current post viral illness politics…But until researchers find a diagnostic test, we will have to keep screaming at the brick wall of indifference until our voices literally tear it down ..read more
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Honoring Long Covid Patients
Whitney Dafoe
by
1M ago
Today we honor all of the millions of people who got Covid and just never recovered….We have arrived here from different places, and while we must acknowledge those differences, we also must remember that we have one common goal: END ME/CFS and Long Covid. It is so important that all ME/CFS and Long Covid patients unite ..read more
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How Are Hospitals Killing People?
Whitney Dafoe
by
1M ago
How have we come to a place where hospitals are not only abusing people, but *killing* them? These are the most basic centers for health, healing and care in our society…We should feel safe going to a hospital knowing they are the best place in the entire world to be when we are sick or unwell ..read more
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Don't Let Another ME Patient Die In Your Care
Whitney Dafoe
by
1M ago
Dear Royal Lancaster Infirmary…Every minute you wait is just one more minute of malpractice and abuse exacerbating Millie’s stomach sensitivity and likely making it worse. You are forcing her to hurt herself in order to stay alive…Millie needs a PEJ tube right now, this moment. Not in a few hours, not tomorrow, not in 5 weeks when she is dead. Right now ..read more
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A BBC TV Show Tells Millions of Viewers that ME/CFS is a Trivial Joke
Whitney Dafoe
by
2M ago
ME/CFS is not a joke to use to pawn snake oil products…BBC News, the TV show Dragon’s Den and Giselle Boxer are directly responsible for the future deaths and suffering of millions of ME/CFS patients due to their spread of this bigoted misinformation ..read more
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The ME/CFS Valentine's Day Challenge!
Whitney Dafoe
by
2M ago
I want to challenge every single one of you to think of 3 people you love and reach out to them today, on Valentine’s day, and tell them that you love them and you are thinking of them and you care about them ..read more
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Moments of "Not Trying"
Whitney Dafoe
by
2M ago
I’m not accomplishing anything right now. I’m not doing anything to try to be healthier, I’m not running the food pump, I’m not taking any meds, I’m not planning anything with my caregivers or doctors, I’m not following my routine ..read more
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My Jtube Broke...Going To The Hospital
Whitney Dafoe
by
2M ago
Right now I am waiting for the ambulance to come pick me up and take me to the hospital to have a new Jtube put in…Our medical care system is not setup for bedridden or homebound people living with long term illness…Please say a prayer for me today that I don’t get hurt or get worse and that I can find peace again returning to my prison cell after seeing the buzzing, beautiful world ..read more
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