Hugo
@mxworldwide.bsky.social
They/them | 28 | ME/CFS since 2016, very/severe since 2022 after covid | Severe hyperacusis
Mostly post about ME but will share things relating to disability justice, leftist & queer issues and Palestine 🇵🇸
In "Australia" on Wurundjeri Country
Mostly post about ME but will share things relating to disability justice, leftist & queer issues and Palestine 🇵🇸
In "Australia" on Wurundjeri Country
Pinned
Hugo
@mxworldwide.bsky.social
· Oct 17
Hello! Have made an account here.
I'm Hugo (they/them). I'm nearly fully bedbound with severe/very severe ME, primarily here to connect with others in the #MECFS & disabled community.
Slowly finding people I recognise from twitter but also keen to meet new people ☺️
I'm Hugo (they/them). I'm nearly fully bedbound with severe/very severe ME, primarily here to connect with others in the #MECFS & disabled community.
Slowly finding people I recognise from twitter but also keen to meet new people ☺️
Reposted by Hugo
Assisted dying a.k.a. assisted suicide or euthanasia, is not fair or ethical or dignifying as long as disabled people are more likely to receive access to that than actual medical care or things that allow us to live.
November 26, 2024 at 5:54 AM
Assisted dying a.k.a. assisted suicide or euthanasia, is not fair or ethical or dignifying as long as disabled people are more likely to receive access to that than actual medical care or things that allow us to live.
Reposted by Hugo
Our chronic illness community has lost another member - Prof Gemma Carey has passed away.
Gemma was a fierce advocate for long covid and chronic illness - and an incredibly talented writer.
She was a valuable member of our community and I’m sending tons of love to her family and all who knew her.
Gemma was a fierce advocate for long covid and chronic illness - and an incredibly talented writer.
She was a valuable member of our community and I’m sending tons of love to her family and all who knew her.
November 25, 2024 at 3:30 AM
Our chronic illness community has lost another member - Prof Gemma Carey has passed away.
Gemma was a fierce advocate for long covid and chronic illness - and an incredibly talented writer.
She was a valuable member of our community and I’m sending tons of love to her family and all who knew her.
Gemma was a fierce advocate for long covid and chronic illness - and an incredibly talented writer.
She was a valuable member of our community and I’m sending tons of love to her family and all who knew her.
Reposted by Hugo
Dear anyone who ever answers a professional email with "you can call me!"
If I wanted to call you, I would have. I'm well aware of how a phone works, but I chose to contact you in writing for reasons. Is it really too much to ask that you answer in kind?
But sure, I'll disclose my disability. 🙄
If I wanted to call you, I would have. I'm well aware of how a phone works, but I chose to contact you in writing for reasons. Is it really too much to ask that you answer in kind?
But sure, I'll disclose my disability. 🙄
November 25, 2024 at 8:53 AM
Dear anyone who ever answers a professional email with "you can call me!"
If I wanted to call you, I would have. I'm well aware of how a phone works, but I chose to contact you in writing for reasons. Is it really too much to ask that you answer in kind?
But sure, I'll disclose my disability. 🙄
If I wanted to call you, I would have. I'm well aware of how a phone works, but I chose to contact you in writing for reasons. Is it really too much to ask that you answer in kind?
But sure, I'll disclose my disability. 🙄
Reminder that some/many with more severe ME have not been able to make the move over to here
November 24, 2024 at 7:14 AM
Reminder that some/many with more severe ME have not been able to make the move over to here
Reposted by Hugo
Peace depends on holding those responsible for these crimes accountable — both inside and outside of Israel.
There can be no justice without accountability, and there can be no peace without justice — that’s just silencing the oppressed.
We must not stop until Palestine is free
There can be no justice without accountability, and there can be no peace without justice — that’s just silencing the oppressed.
We must not stop until Palestine is free
November 22, 2024 at 11:23 AM
Peace depends on holding those responsible for these crimes accountable — both inside and outside of Israel.
There can be no justice without accountability, and there can be no peace without justice — that’s just silencing the oppressed.
We must not stop until Palestine is free
There can be no justice without accountability, and there can be no peace without justice — that’s just silencing the oppressed.
We must not stop until Palestine is free
Here's link to the transcript of this video, for others like me who can't do videos (I can't do long articles either tbh but I'll try and read at least some of it) #MECFS
November 23, 2024 at 11:57 AM
Here's link to the transcript of this video, for others like me who can't do videos (I can't do long articles either tbh but I'll try and read at least some of it) #MECFS
Reposted by Hugo
The saying “don’t let illness define you” has a sub-text that disability is bad. But the fact is that able-bodied people have a lot to learn from us. We can be more empathetic, more compassionate, and more nuanced in our thinking… #chronicillness #mecfs #pwme www.bedperspective.com/p/dont-let-i...
“Don’t let illness define you,” they say. But this could be problematic.
We are often told to not let illness define us. But is this always possible?
www.bedperspective.com
November 23, 2024 at 9:44 AM
The saying “don’t let illness define you” has a sub-text that disability is bad. But the fact is that able-bodied people have a lot to learn from us. We can be more empathetic, more compassionate, and more nuanced in our thinking… #chronicillness #mecfs #pwme www.bedperspective.com/p/dont-let-i...
Reposted by Hugo
Living on your own with severe M.E. is really scary a lot of the time. Just lying there, staring at the wall wondering if you’ll gather just enough ability to make the simple cup of tea you’re desperate for, or eat. The sheer lack of capacity is unrelentingly shocking to me.
#pwME #MECFS
#pwME #MECFS
November 23, 2024 at 10:50 AM
Reposted by Hugo
"The article caused ME advocacy groups & campaigns including @longcovidadvoc.bsky.social
& #ThereforME to suspend their support of the #MEAssociation. @alexisme.bsky.social
a Dr with #ME also penned a retraction letter that more than 1000 people have signed"
thesicktimes.org/2024/11/22/a...
& #ThereforME to suspend their support of the #MEAssociation. @alexisme.bsky.social
a Dr with #ME also penned a retraction letter that more than 1000 people have signed"
thesicktimes.org/2024/11/22/a...
Advocacy groups suspend ties with U.K. charity The ME Association over chairman’s op-ed - The Sick Times
Earlier this month, the chairman of the United Kingdom charity the ME Association, Neil Riley, published a controversial op-ed in the charity’s magazine arguing that many people with Myalgic Encephalo...
thesicktimes.org
November 23, 2024 at 9:31 AM
"The article caused ME advocacy groups & campaigns including @longcovidadvoc.bsky.social
& #ThereforME to suspend their support of the #MEAssociation. @alexisme.bsky.social
a Dr with #ME also penned a retraction letter that more than 1000 people have signed"
thesicktimes.org/2024/11/22/a...
& #ThereforME to suspend their support of the #MEAssociation. @alexisme.bsky.social
a Dr with #ME also penned a retraction letter that more than 1000 people have signed"
thesicktimes.org/2024/11/22/a...
Reposted by Hugo
Just so we’re clear: sex work is an issue of disability justice. There are both sex workers who are disabled and disabled people who pay sex workers as the primary or only way they receive sexual gratification/intimacy
Everyone deserves fulfilling sexual expression.
Everyone deserves fulfilling sexual expression.
November 23, 2024 at 5:08 AM
Just so we’re clear: sex work is an issue of disability justice. There are both sex workers who are disabled and disabled people who pay sex workers as the primary or only way they receive sexual gratification/intimacy
Everyone deserves fulfilling sexual expression.
Everyone deserves fulfilling sexual expression.
Here's link to the transcript of the video by @abrokenbattery.bsky.social that's going around. For others who also can't do videos (I can't do long articles either tbh but I'll try and read at least some of it) #MECFS
https://medium.com/@abrokenbattery/me-cfs-scandal-explainer-eb4c1bfb7464
t.co
November 23, 2024 at 5:28 AM
Here's link to the transcript of the video by @abrokenbattery.bsky.social that's going around. For others who also can't do videos (I can't do long articles either tbh but I'll try and read at least some of it) #MECFS
This could be helpful for keeping up with people with severe and very severe #MECFS
this is one of my favorite custom feeds, Quiet Posters
it shows you posts from people you follow who don't post that much! so it surfaces friends' posts that might otherwise get drowned out in the Following feed (which is reverse chronological) 🤗
it shows you posts from people you follow who don't post that much! so it surfaces friends' posts that might otherwise get drowned out in the Following feed (which is reverse chronological) 🤗
November 23, 2024 at 4:14 AM
This could be helpful for keeping up with people with severe and very severe #MECFS
Reposted by Hugo
From the river to the sea ✊️🇵🇸
November 23, 2024 at 3:45 AM
From the river to the sea ✊️🇵🇸
Reposted by Hugo
Exactly this. So many countries are just trying to kill people before helping them. It’s gross.
November 22, 2024 at 6:33 AM
Exactly this. So many countries are just trying to kill people before helping them. It’s gross.
Reposted by Hugo
#mecfs folks, do you elevate your feet when resting horizontally? If yes how much is helpful? I'm hoping to reduce the time of this flare up.
November 21, 2024 at 1:45 PM
#mecfs folks, do you elevate your feet when resting horizontally? If yes how much is helpful? I'm hoping to reduce the time of this flare up.
Struggling w/ capacity finding ppl via starter packs etc so, looking to connect w/:
Ppl in the ME/CFS & disabled community, especially w/ severe/v severe ME, located in "Australia" or w/ a focus on disability justice. Queer is a bonus & no Zionists pls.
Appreciate anyone who cares to boost this :)
Ppl in the ME/CFS & disabled community, especially w/ severe/v severe ME, located in "Australia" or w/ a focus on disability justice. Queer is a bonus & no Zionists pls.
Appreciate anyone who cares to boost this :)
November 21, 2024 at 12:36 PM
Struggling w/ capacity finding ppl via starter packs etc so, looking to connect w/:
Ppl in the ME/CFS & disabled community, especially w/ severe/v severe ME, located in "Australia" or w/ a focus on disability justice. Queer is a bonus & no Zionists pls.
Appreciate anyone who cares to boost this :)
Ppl in the ME/CFS & disabled community, especially w/ severe/v severe ME, located in "Australia" or w/ a focus on disability justice. Queer is a bonus & no Zionists pls.
Appreciate anyone who cares to boost this :)
Reposted by Hugo
Tasmanian NDIS participant Adam Quarrell demanding apology over handling of his case
"Hobart man Adam Quarrell was asked "can't you just hold it in" when discussing his need for catheters with an NDIS planner."
♿️ #disability #NDIS
www.abc.net.au/news/2024-11...
"Hobart man Adam Quarrell was asked "can't you just hold it in" when discussing his need for catheters with an NDIS planner."
♿️ #disability #NDIS
www.abc.net.au/news/2024-11...
'I'm not inserting catheters for fun, mate': NDIS participant's fight for funding leaves him furious
Adam Quarrell says being an NDIS participant is like "being in an abusive relationship". He's fighting to have funding restored in his care plan for catheters, without which he says he will die.
www.abc.net.au
November 21, 2024 at 5:32 AM
Tasmanian NDIS participant Adam Quarrell demanding apology over handling of his case
"Hobart man Adam Quarrell was asked "can't you just hold it in" when discussing his need for catheters with an NDIS planner."
♿️ #disability #NDIS
www.abc.net.au/news/2024-11...
"Hobart man Adam Quarrell was asked "can't you just hold it in" when discussing his need for catheters with an NDIS planner."
♿️ #disability #NDIS
www.abc.net.au/news/2024-11...
Reposted by Hugo
One of the largest & most active #ME F/book groups has just deleted all recent posts relating to ME Association Chairman Neil Riley, his recent article & wider issues with the MEA
The MEA have until now restricted comments on all X & F/b posts
#pwME need safe online spaces where we can discuss this
The MEA have until now restricted comments on all X & F/b posts
#pwME need safe online spaces where we can discuss this
November 21, 2024 at 10:41 AM
Reposted by Hugo
Trans day of remembrance. Don't just focus on those trans people who have been murdered by strangers in public. Also remember the trans people who were denied healthcare, allowed to die in prison, encouraged to kill themselves by their loved ones, buried under the wrong name by their families.
November 20, 2024 at 3:34 PM
Trans day of remembrance. Don't just focus on those trans people who have been murdered by strangers in public. Also remember the trans people who were denied healthcare, allowed to die in prison, encouraged to kill themselves by their loved ones, buried under the wrong name by their families.
Reposted by Hugo
Today is #TransDayofRemembrance. A day to mourn all our trans siblings lost to transphobia. It is also a day of action and education so that one day the list of those we have lost does not grow year on year.
Below is a short list of some basic educational resources on trans activism.
Below is a short list of some basic educational resources on trans activism.
November 20, 2024 at 7:42 AM
Today is #TransDayofRemembrance. A day to mourn all our trans siblings lost to transphobia. It is also a day of action and education so that one day the list of those we have lost does not grow year on year.
Below is a short list of some basic educational resources on trans activism.
Below is a short list of some basic educational resources on trans activism.
Reposted by Hugo
We really need starter packs that include smaller accounts.
It's great that people who are already well recogised are in starter packs but there are so many great people with smaller accounts and it can be hard to make your voice heard.
I might work on a CC smaller accounts one when I get time.
It's great that people who are already well recogised are in starter packs but there are so many great people with smaller accounts and it can be hard to make your voice heard.
I might work on a CC smaller accounts one when I get time.
November 19, 2024 at 5:36 PM
We really need starter packs that include smaller accounts.
It's great that people who are already well recogised are in starter packs but there are so many great people with smaller accounts and it can be hard to make your voice heard.
I might work on a CC smaller accounts one when I get time.
It's great that people who are already well recogised are in starter packs but there are so many great people with smaller accounts and it can be hard to make your voice heard.
I might work on a CC smaller accounts one when I get time.
*refraining from weighing in on the latest bullshit from the ME Association as I don't have the capacity to today*
November 20, 2024 at 3:23 AM
*refraining from weighing in on the latest bullshit from the ME Association as I don't have the capacity to today*
Reposted by Hugo
Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME
November 19, 2024 at 4:26 PM
Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME