I’m the one in the middle with the hat and big happy smile… because getting to a nearby beach with people you love is a VERY special occasion when you are housebound with severe #MECFS!! Yes I exceeded my limits for a day, totally worth it on this occasion.

Some excellent analysis and cautions about how we go forward with this important new research. #MECFS

What an amazing project. Fellow #PwME, if a lovely art card in the mail would make you happy check this out! 💙

Exactly. Nothing without us means NOTHING without us!

“The world needs to start caring about us and standing up for us the way it stands up for other injustices. We are dying. We are losing every single one of our basic human rights including our basic ability to contribute to this world and the world is losing everything we have to contribute.”

“I love this country, I feel the soil of this country in my bones. But I am not proud to be an American today. And I weep for those (possibly myself included) who will lose their lives or see everything around them fall to ruin because of boundless greed.”

I had two recent mask experiences during appointments with doctors. One, during a mask mandate at our clinic, the doctor wasn’t wearing a mask and asked me to remove mine because he was having trouble hearing me and reassured me that he wasn’t sick… I kept my mask on.

“The dying are alive. Killing us more quickly - via MAiD or denying us treatments necessary to live - will not protect anyone else from death. In fact it will do the opposite and put everyone at greater risk of being among the dying prematurely.”

Feeling rather revolfed today

Reading this made me feel really icky inside, but it is also such an important story to share. Ableism is inside all of us (even those of us who are disabled) and we all have to make the effort on the daily to recognize how it is affecting our perceptions and actions.

I struggle to describe the fatigue of #MECFS, this thread has some excellent analogies! #MillionsMissing #MECFSawareness

#MECFS #MillionsMissing #MutualAid #MECFSawareness

#MECFS #LongCovid #MutualAid Please help this human if you can. gofund.me/3865b1e5

For the most part I keep it together. I try not to dwell on how small my world is, how much I’ve lost. But the other week it all came rushing over me. #MECFS #DisabilitySOS

You can’t “try harder” your way out of disability You can’t “healthy diet” your way out of disability Many conditions are completely debilitating & the people suffering from them end up disappeared Non disabled people can’t face the reality of chronic illness, so they choose not too #WorldMEDay

This #WorldMEDay, help raise visibility for those disabled by this devastating condition. Ableism teaches us to hide our pain. To smile and say “I’m fine”. To push through. With ME/CFS, pushing through can make you so much worse. We need to encourage rest. Provide support. Validate the suffering

Today, May 12, is ME/CFS Awareness Day. That’s the disease that keeps me from working or doing any of the things that used to give my life meaning. It’s also my birthday month! Read on for some ways you can help me celebrate. This is also a thread about living with #MECFS 1/

Disabled people aren’t getting a free ride Being chronically ill is not a vacation It’s an unrelenting 24/7 fight to get your basic needs met. You’re forced into legislated poverty & expected to grovel for what little help the system will give There’s nothing easy about it & we need more support

Fuck M.E. Please donate to the @openmedf.bsky.social Open Medicine Foundation. I also have my own crowdfunder to help me survive. Been thinking of giving up on it as it takes so much effort for very little gain. A few donations might change my mind… see pinned post on my page.

The “crip tax” refers to the many things that make life more expensive when we are disabled. Just as we become poorer than ever…

We’re treated as if our mind is too broken to think positively. We’re treated as if our coping mechanisms are too broken to reduce our anxiety and stress. We’re treated as if our choices are too broken. When the research is clear – WE HAVE BROKEN BODIES. #MEAwareness #MillionsMissing #PwME #MECFS

There’s a degree of financial privilege one has by virtue of being non disabled. The ability to work, to not have to spend hundreds of dollars on medical supplies… it all adds up. When you’re disabled the system forces you to remain below the poverty line, which just makes a person sicker.

No one should be coerced into Assisted Death in lieu of being provided adequate supports to thrive. Yet this is happening to disabled people in Canada. People who need housing. Home care. Specialized medical care. We must commit to providing the right to live if we’re offering the right to die

Nuance is important & not everything is mutually exclusive Healthy living, good diet, exercise etc are important for health. Anything you can do to help your body is a win That doesn’t mean it can cure or prevent disabilities. Stating otherwise is health supremacy setting the stage for eugenics

Important to understand the hidden aspects of our MAiD program here in Canada. I didn’t want to see that side of it, especially after numerous people I love used MAiD to alleviate their suffering when they were terminally ill. But we must hear and validate these stories! MAiD should not be eugenics.

Before I was too sick, I worked for many years in the natural foods/wellness industry. I can attest to it being an extremely ableist industry/movement, most definitely “eugenics adjacent.”

It’s my birthday month and I’m fundraising ✨ for my birthday i would love to take a shower as it’s been a couple of years. And i need helping paying for transport back to Vegas after my biopsy. I would love if you’d share and/or contribute! ❤️ being disabled there’s endless things to pay for.

For real. As someone who loved being the errand friend and having errand friends when my disabilities were less severe, I miss both the social aspect as well as being able to have more control over where and how my money was spent. Anyone want to be my errand friend again?

THIS. This is how we survive as governments gut the systems we rely on and we keep getting poorer. My ultimate dream is some kind of structured community care, where disabled folks can connect with willing helpers to better meet needs. Would help abled folks better understand disabled life too.

You should strive to wear the best mask you can that fits your face. Generally this will be a head strap respirator. There are a few folks who will pass a fit test in an ear loop, but they’re the outliers rather than the rule. Any mask is better than no mask, but to up your game, get headstraps!

“You’re already sick so why don’t you take some risks?” “What’s the worst that could happen?” “Are you better YET?” Those of us living with chronic illness have to constantly defend & justify our need to protect our baseline. It’s the most important thing in the world to us:

Calling what happens to #pwme after exertion, malaise, is like telling someone with a broken leg they have a slothful bone. #mecfs #severeME

Ask your disabled friends and neighbours what you can do to support them, and keep the offer open!! Please see my pinned post if you want to help me…

It’s really important that people be aware of how Canada treats its disabled citizens! We are often forced to do applications like this even when there is no benefit to us. In fact going through something similar to this in BC made me sicker. Our disability support systems make people more disabled!

My talk is now available to watch! Please watch, share, comment- all the things <3 #mecfs #millionsmissing #chronicillness #momsky #disabledsky youtu.be/JzKfi8LOMQU?...

Such an important thing to talk about! The next time you see an “inspiring” story about disability, pay attention to how it is framed to represent the disabled people as being more worthy precisely because they are able to be LESS disabled. Human worth should not be connected to health status.

An incredibly tragic story and a classic example of how police training does not equip them to deal with many types of disability.

Pay attention to how you and those around you discuss health and disability. Sure, healthy living is important. But it doesn’t prevent all illness nor does it somehow make someone a “good person.” Getting sick with an incurable disease is not a personal failing.

Disabled kids are being suspended from schools in the US at a higher rate than their peers We give out attendance awards & penalize chronically ill kids This is ableism. It’s preparing kids to be nothing more than cogs for capitalism, and it does real harm We are more than our ability to produce

This National Public Health Week, I encourage fellow journalists to refer to the Covid-19 pandemic in the present tense. Sure, the government emergency in the US is over, but that means people can be forced to come into work while sick with Covid, which increases the risk of developing Long Covid.

Why do we insist on looking at disease in terms of survival rate only? There’s almost never any mention of disability, despite the fact that many diseases can (and do) leave people with lifelong chronic illness. Covid has disabled far more people than it’s killed, and measles may do the same.

Alt text on your photos is really important! Here’s a thread about why it’s important and ways to make it easier.

Heard a sandhill crane today for the first time this year. Anyone else? #HaidaGwaii

People keep saying Covid is here to stay and we’ve “learned to live with it”. No we haven’t. We’ve capitulated to it. We’ve accepted repeat infections as inevitable. Learning to live with it would involve clean air, masks in healthcare, better tests & treatments and free respirators

I’m totally baffled why air filtration in public spaces hasn’t just become common practice. I mean, it’s just better for everyone for lots of reasons, and is probably the easiest and cheapest way to mitigate spread of airborne pathogens like Covid.

I often say this to healthy muggles: I have something like .3% of the energy that you have. Close your eyes and picture all of the things you do in your life. Now imagine removing 99.7% of those things... New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

There are no “benefits” to being disabled, just fighting every day just to get not even the bare minimum needed for survival. Forget about any medical treatments that might make you less disabled, our systems are designed to make sure you understand just how little value you have.

No book tariffs please!

This is one of the hardest things to explain to a healthy person… I talk about overdoing it and they cheerfully say “oh well, you’ll just sleep all afternoon.” How to explain that actually I am LESS likely to sleep the more tired I am?! #MECFS #ChronicIllnesswoes