Shannon Hammond
@shannonhammond.bsky.social
Severely disabled but still surviving with #MECFS. Animal loving queer. Poor.
Helping and advocating for marginalized folk whenever and however I can.
#PwME
#MyalgicE
Profile: Cute black and brown dog with turquoise leash sitting on leafy forest floor.
Helping and advocating for marginalized folk whenever and however I can.
#PwME
#MyalgicE
Profile: Cute black and brown dog with turquoise leash sitting on leafy forest floor.
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.
August 18, 2025 at 6:40 PM
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
#MECFS
I was asked about my opinion on this recent study into #MECFS and I wanted to share here as well. First and foremost, sincere congratulations to the research team for some stellar work. I will never stop cheering for groups that are working to uncover the biological 1/
1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome.
The Manhattan plot below shows the genes and chromosomes involved.
Let’s unpack the results 🧵
The Manhattan plot below shows the genes and chromosomes involved.
Let’s unpack the results 🧵
August 7, 2025 at 8:54 PM
Some excellent analysis and cautions about how we go forward with this important new research.
#MECFS
#MECFS
What an amazing project. Fellow #PwME, if a lovely art card in the mail would make you happy check this out! 💙
This project is still ongoing: card exchange for #MECFS. You can sign up to receive a card, make a card, or both. It can be a one-time thing, or you might continue sending items, depending on each person’s abilities. It’s no pressure, all skills & severities welcome.
chronic.market/art-card-pro...
chronic.market/art-card-pro...
Art Card Project for ME/CFS – Chronic Market
chronic.market
July 23, 2025 at 5:02 PM
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!
I think all too often people don’t understand the importance of including disabled people into planning decisions that seemingly don’t impact them.
When we say nothing about us without us, that truly means everything. An example for you:
When we say nothing about us without us, that truly means everything. An example for you:
July 22, 2025 at 11:32 PM
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 see people protesting the rights of many marginalized groups and important issues. I see people up in arms over injustices faced by people all around the world…BUT WE ARE DYING.…And I don’t see anyone even blinking an eye…
Read the piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
#mecfs
Read the piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
#mecfs
Too Many Of Us Are Dying
I see people protesting the rights of many marginalized groups and important issues. I see people up in arms over injustices faced by people all around the world…BUT WE ARE DYING. Not to mention suf...
www.whitneydafoe.com
July 22, 2025 at 11:26 PM
“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.”
This 4th of July, if I could fly an American flag, it would be flown upside down…Today should be a disgrace to all Americans…Today President Trump signs into law a bill that will take away healthcare from 17 million Americans…
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
4th of July Disgrace
This 4th of July, if I could fly an American flag, it would be flown upside down…Today should be a disgrace to all Americans…Today President Trump signs into law a bill that will take away healthcare ...
www.whitneydafoe.com
July 4, 2025 at 4:17 PM
“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.
When doctors are vehemently anti mask, they put their patients in an impossible situation.
Those of us wearing respirators are doing it because we understand the damage Covid can do. We can’t take the risk.
Many of us are also already disabled & need a lot of medical care 🧵
Those of us wearing respirators are doing it because we understand the damage Covid can do. We can’t take the risk.
Many of us are also already disabled & need a lot of medical care 🧵
June 29, 2025 at 11:29 PM
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.”
NEW post by me. The BC Govt has cut funding to an essential treatment for a disabled child with a very rare disease. Her name is Charleigh Pollock and time is running out. There is link to petition in post. Please sign, share.
open.substack.com/pub/mssineno...
open.substack.com/pub/mssineno...
BC Government MUST Reinstate Funding For A Disabled Child's Medication.
And perhaps it is time to discuss a declaration on the rights of the dying.
open.substack.com
June 26, 2025 at 9:31 PM
“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
a friend of mine shared this ai-generated "emotion wheel" and unfortunately i have been laughing my ass off at it for like 15 minutes now. today i am feeling Fnliinneon
June 6, 2025 at 3:11 AM
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.
A former “friend” told me he cared for me & wanted me to have everything I needed… but that it was time I realize I’m a net negative in society.
He referenced my “free surgeries”, countless ER trips & how the system was artificially extending my life.
🧵
He referenced my “free surgeries”, countless ER trips & how the system was artificially extending my life.
🧵
June 3, 2025 at 3:32 AM
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
#MillionsMissing
#MECFSawareness
[May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome awareness month]
Fatigue isn't just 'tired'... 🧵
Fatigue is perpetually thinking that you'll feel a bit better if you rest that little bit longer...but hours and days later, the lead blanket is just as heavy.
#ME/CFS #LongCovid
1/
Fatigue isn't just 'tired'... 🧵
Fatigue is perpetually thinking that you'll feel a bit better if you rest that little bit longer...but hours and days later, the lead blanket is just as heavy.
#ME/CFS #LongCovid
1/
May 19, 2025 at 4:18 PM
I struggle to describe the fatigue of #MECFS, this thread has some excellent analogies!
#MillionsMissing
#MECFSawareness
#MillionsMissing
#MECFSawareness
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/
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/
May 19, 2025 at 3:59 PM
Reposted by Shannon Hammond
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
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
May 13, 2025 at 1:57 AM
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
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
Reposted by Shannon Hammond
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
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
May 12, 2025 at 8:48 PM
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
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
Reposted by Shannon Hammond
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
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
Why Are Chronically Ill People Forced to Hide Their Pain?
And what would happen if we stopped hiding and showed the world the depths of our suffering?
www.disabledginger.com
May 12, 2025 at 8:38 PM
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
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/
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/
May 12, 2025 at 6:23 PM
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/
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/
Reposted by Shannon Hammond
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
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
May 12, 2025 at 3:27 AM
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
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.
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.
TLDR: This is an SOS. If you don’t have capacity to read this whole thread, please skip ahead to ***WAYS YOU CAN HELP*** Please pick at least one! 🙏🏻💙
#MEAwareness
#MillionsMissing
#DisabilitySOS
#WorldMEDay
#GreatestMEdicalScandal #MyalgicEncephalomyelitis
#MECFS
#LongCovid
#MEAwareness
#MillionsMissing
#DisabilitySOS
#WorldMEDay
#GreatestMEdicalScandal #MyalgicEncephalomyelitis
#MECFS
#LongCovid
May 11, 2025 at 8:52 PM
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.
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…
There's something called the crip tax because it's more expensive to be disabled. Tariffs rising the costs of meds and other supplies will make the crip tax even worse.
May 9, 2025 at 7:48 PM
The “crip tax” refers to the many things that make life more expensive when we are disabled. Just as we become poorer than ever…
Reposted by Shannon Hammond
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
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
May 7, 2025 at 11:17 PM
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
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
Reposted by Shannon Hammond
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.
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.
May 6, 2025 at 3:28 AM
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.
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.
Reposted by Shannon Hammond
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
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
May 6, 2025 at 3:36 AM
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
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
Reposted by Shannon Hammond
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
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
May 5, 2025 at 3:33 AM
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
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.
As New York considers legalizing Assisted Dying, I ask people to read my thread about MAiD in Canada.
Consider who will be deemed “terminal” under fascism. Will the safeguards be enough? What happens when doctors start proactively suggesting it to people who want to live (as they did to me)?
Consider who will be deemed “terminal” under fascism. Will the safeguards be enough? What happens when doctors start proactively suggesting it to people who want to live (as they did to me)?
I’m a disabled person living in Canada. My conditions are incurable - but there ARE treatments. I would be considered a “high cost health user” because I’m medically complex.
The first time a doctor brought up assisted dying - it was in response to my requesting an expedited GI consult /1 🧵
The first time a doctor brought up assisted dying - it was in response to my requesting an expedited GI consult /1 🧵
May 4, 2025 at 11:58 PM
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.