iiinova — where your digital self keeps evolving

Reposted by Hugo

Dom Evans @domevans.electricmarshmallow.com · 26/11/2024

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.

718349

Reposted by Hugo

Kelly @broadwaybabyto.bsky.social · 25/11/2024

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.

41628125

Reposted by Hugo

FunkisHen @funkishen.bsky.social · 25/11/2024

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. 🙄

1153

Hugo @mxworldwide.bsky.social · 25/11/2024

Haven't been able to listen to music in a few years but when I could, this album for me was Double Nickels on the Dime by Minutemen

020

Hugo @mxworldwide.bsky.social · 24/11/2024

Please never forget to consider those who are most severe when thinking or speaking about the ME community

110

Hugo @mxworldwide.bsky.social · 24/11/2024

Reminder that some/many with more severe ME have not been able to make the move over to here

130

Hugo @mxworldwide.bsky.social · 24/11/2024

I think for some who are very severe making the switch is not that easy unfortunately. I've only just barely had the capacity to do it

120

Reposted by Hugo

Tiberius @ecomarxi.bsky.social · 22/11/2024

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

12383129

Hugo @mxworldwide.bsky.social · 23/11/2024

(posting again as a quote post to make it more obvious what I'm referring to)

010

Hugo @mxworldwide.bsky.social · 23/11/2024

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

medium.com

ME/CFS Scandal Explainer

https://youtu.be/e0FNw0z3PVw

140

Hugo @mxworldwide.bsky.social · 23/11/2024

And yes there's still a long way to go sadly. Solidarity 🫂

110

Hugo @mxworldwide.bsky.social · 23/11/2024

Oh sorry, do you mean the acronyms I used? Graded Exercise Therapy and Cognitive Behavioural Therapy

210

Hugo @mxworldwide.bsky.social · 23/11/2024

Some doctors who are a bit better exist but they're the exception rather than the norm

110

Hugo @mxworldwide.bsky.social · 23/11/2024

Sorry to hear, and sadly no, it's not much better here in Australia. It's still pretty psychologised and GET and CBT are the official treatments

200

Reposted by Hugo

Madelleine Müller @madelleine.bsky.social · 23/11/2024

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...

bedperspective.com

“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?

3459

Reposted by Hugo

lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 23/11/2024

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

1115125

Reposted by Hugo

Jon @liberatedbygaga.bsky.social · 23/11/2024

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.

313932

Hugo @mxworldwide.bsky.social · 23/11/2024

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

t.co

https://medium.com/@abrokenbattery/me-cfs-scandal-explainer-eb4c1bfb7464

132

Hugo @mxworldwide.bsky.social · 23/11/2024

This could be helpful for keeping up with people with severe and very severe #MECFS

030

Reposted by Hugo

Vanessa Smith @normalness.bsky.social · 22/11/2024

Exactly this. So many countries are just trying to kill people before helping them. It’s gross.

Any assisted dying bill should also include an assisted living component ensuring access to a thriving wage, regardless of ability to work, and high quality social care and palliative care.

1111

Hugo @mxworldwide.bsky.social · 21/11/2024

Hi! I would appreciate that thank you :)

010

Reposted by Hugo

Morgen🖤 @morgenlefay.bsky.social · 21/11/2024

#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.

141

Hugo @mxworldwide.bsky.social · 21/11/2024

Still much appreciated ☺️

020

Hugo @mxworldwide.bsky.social · 21/11/2024

Do we have to use hashtags or should just the word ME/CFS make things show up in here?

000

Hugo @mxworldwide.bsky.social · 21/11/2024

Was a struggle fitting everything into one post within the character limit lol

010

Hugo @mxworldwide.bsky.social · 21/11/2024

(anyone who wants to connect also would be great if you could comment, struggle a bit also with sifting through new follows)

110

Hugo @mxworldwide.bsky.social · 21/11/2024

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 :)

93113

Reposted by Hugo

allyann @allyann.bsky.social · 21/11/2024

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...

abc.net.au

'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.

27626

Reposted by Hugo

Katy B @katybrc.bsky.social · 21/11/2024

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

0123

Reposted by Hugo

Carta Monir @cartamonir.com · 20/11/2024

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.

2447732008

Hugo @mxworldwide.bsky.social · 21/11/2024

Yeah it does. To be clear the private script is $$$ but in my case I'm willing to pay if I do get covid again

000

Hugo @mxworldwide.bsky.social · 21/11/2024

My gp was happy to write me a private script for them to have in case I get covid again

110

Hugo @mxworldwide.bsky.social · 20/11/2024

Do you mean covid antivirals?

100

Reposted by Hugo

Owen Exie Hurcum 💜🤍💙🍉 @owenexiehurcum.com · 20/11/2024

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.

A graphic that shows 5 candles in blue, pink, and white. The colours of the trans flag. The text reads "Transgender Day of Remembrance November 20"

414886

Reposted by Hugo

Pete #COVIDisAirborne @peteuk7.bsky.social · 19/11/2024

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.

3629

Hugo @mxworldwide.bsky.social · 20/11/2024

*refraining from weighing in on the latest bullshit from the ME Association as I don't have the capacity to today*

040

Reposted by Hugo

Long Covid Advocacy @longcovidadvoc.com · 19/11/2024

Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME

It is shocking to see allies provoke distress in the community. We feel that the letter from The ME Association's Chairman of 20 yrs, Neil Riley, in the ME Essentials magazine was deeply inappropriate, potentially harmful & out of touch.

The 'othering' & stigmatisation of ME patients as 'difficult' can only be concluded to be abusive & reflective of how people with ME are often demeaned by the medical profession.

Strong action is needed from The ME Association to restore trust & repair reputational damage; an apology for "undue upset" is not an apology.

It is our sincere wish that a way forward is found to resolve the situation. In line with There For ME, we shall remove all links & association with The ME Association.

511830

Hugo @mxworldwide.bsky.social · 20/11/2024

You've made a bunch of posts though. I'm talking about accounts who appear totally inactive apart from following other accounts

010

Reposted by Hugo

Carole Bruce @cabruce.bsky.social · 19/11/2024

When it comes to relating the severity of #ME or #LongCovid there seems to be no amount of evidence, presentation of facts or changing the narrative that will convince some people of the urgent need for well funded research and care. It’s always turned around and the messenger becomes the problem.

0437

Hugo @mxworldwide.bsky.social · 19/11/2024

Frustrated with myself for still sometimes getting tricked by energy from the pre-PEM adrenaline boost 🙃

040

Hugo @mxworldwide.bsky.social · 19/11/2024

All the bot/spam follows on twitter seem to be fairly obvious

000