iiinova — where your digital self keeps evolving

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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.

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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.

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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. 🙄

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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

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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

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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

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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?

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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

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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.

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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

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

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

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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.

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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.

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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 :)

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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.

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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

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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.

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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"

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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.

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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*

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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.

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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.

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

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

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

Getting quite a few follows from accounts with no bio or posts and most with no mutuals. Bots or just (so far) inactive users? They seem to be following other ME accounts so would appear not totally random?

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Karen Hargrave @karenlhargrave.bsky.social · 18/11/2024

We are sad to announce that #ThereForME has suspended our collaboration with the ME Association. We feel that concerns from the community must be heard. The door remains open to continue our collaboration once action is taken and concerns addressed. More here 👇

We are very sad to announce that the #ThereForME campaign has suspended our
collaboration with the ME Association.

Like others in the ME community, we have deep concerns about a recent editorial published
by the ME Association and authored by the ME Association’s Chairman (‘Animals need to
move’). We wrote to the ME Association today expressing concerns about the editorial and
asking for an update on the actions that the ME Association would be taking to address
them. We did not feel that the response we received was adequate and so we have taken
the decision to suspend our collaboration with immediate effect.

We are very proud of how we have managed to bring the ME and Long Covid communities
together under a shared advocacy message since launching the campaign four months ago.
We believe our community is strongest when we can work together and so this is not a
decision that we have taken lightly. However, we are also very grateful for the trust we have
built with the ME community. We therefore feel that we cannot in good conscience continue
our collaboration with the ME Association until the very valid concerns from the community
have been sufficiently addressed.

We have made clear to the ME Association the actions we believe are necessary from their
side in order to resume our collaboration. The door remains open to continue working
together once we feel sufficient action has been taken. We very much hope that this will be
the case.

In the meantime, we will be focusing our time and energy on what we feel our campaign
does best: speaking up for people with ME and Long Covid, who will always be at the heart
of our campaign.

Karen, Emma and Oonagh

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Alexis Gilbert @alexisme.bsky.social · 17/11/2024

After an article by the chairman of the ME Association I’ve drafted a letter. You can add your name to the bottom or DM me l'll add it. I've written it from patients but if you're a carer, ally or health professional, just note after your name eg (Carer for pwME etc) docs.google.com/document/d/1...

docs.google.com

Letter to MEA Nov 2024

If you notice any errors, please correct them but track changes so I can see them. Dear ME Association We are writing to you as patients with ME. We were shocked and offended to read the editorial...

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María Richardson @diatoma.bsky.social · 18/11/2024

I've been seeing supposed allies turn around & say that people with ME must exercise. Besides the dysautonomia person, there's a recent awful letter from the chairman of MEAssociation titled "Animals need to move". Explaining PENE & #SevereME clearly seems especially important these days.

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Hugo @mxworldwide.bsky.social · 17/11/2024

Does the feeds all being chronological mean I'm less likely to be seen, being in a significantly different timezone to many/most who are following me?

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Hugo @mxworldwide.bsky.social · 17/11/2024

I suggested (and she accepted) a few little changes that felt a bit nitpicky but that I think were important in the specialist (and my GP) having a more accurate understanding of my ME. Including using simply "fatigue" as the label/reason for things.

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PZ @itsmepz.bsky.social · 17/11/2024

This is actually critical to understanding why there is a Long Covid crisis. We are only dealing with this scale of debilitating illness due to the neglect of ME. In a world where ME was taken seriously, public health campaigns would communicate that it is a potential severe outcome of infection.

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ez @elinz.bsky.social · 16/11/2024

This is worth reiterating! "Failure to appropriately diagnose ME/CFS amongst those with long COVID is detrimental to those suffering from it, as well as those with non-COVID ME/CFS and the general public." #pwME #MECFS #LongCovid #LCME www.healthrising.org/blog/2023/05...

healthrising.org

The Problematic Language of Long COVID and ME and Why it Matters - Health Rising

Earlier Alice penned a thought-provoking blog “No, long COVID is not helping ME/CFS”. Now she and Dr. Naomi Harvey propose that a shift in the language we use to describe both long COVID and ME/CFS wo...

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ME Foggy Dog @mefoggydog.bsky.social · 16/11/2024

Reminder- Dysautonomia experts/neurologists ARE NOT automatically experts in PEM. Note- #pwME are not necessarily living in fear of PEM. We have a healthy respect for the real likelihood of deterioration. Many/most aren't scared of exertion. PEM is not the same as the exercise intolerance 1/

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Eliza Charley | Actress on Pause @elizacharley.bsky.social · 16/11/2024

This 💯 I’m seeing way too many healthcare offerings say “it’s not graded exercise therapy. It’s a professional program tailored to the patients limits to establish a baseline then working with the patient on mutually negotiated goals to slowly increase their function” 👀 aka.. definition of GET

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Wensk. @interwen.bsky.social · 16/11/2024

FELLOW LEFTISTS, fascism attacks disabled/vulnerable people first. Abandoning them in a pandemic because political interests told you to, was a mistake! Correct course!

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Binita Kane @binitakane.bsky.social · 16/11/2024

Let’s say this loud and clear: Exercise is not the goal, recovery is the goal so one can exercise. Listen to this man - he’s a world leading expert on PEM/PENE #ME #Longcovid

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Rex has gone rogue/fishing @tsaimelemoni.bsky.social · 17/11/2024

What's the deal with videos/photos of the Palestinian genocide getting removed? I know we've got a way to mark images as sensitive, wouldn't it make sense to add an additional category to the options instead of - no matter how unintentional - suppressing info RE an active genocide?

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Naomi Harvey PhD @naomidharvey.bsky.social · 16/11/2024

The request to ‘close the account’ is a request to be able to make it private 🔒 as and when needed. This is both a safety and accessibility issue. @support.bsky.team

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Naomi Harvey PhD @naomidharvey.bsky.social · 16/11/2024

A request for help making this platform safer from someone who isn’t well enough to move over entirely unless these change. Can people here start asking for these things please?

Can people who are already there and are able to do so make some suggestions to make it more safe and accessible?
- drafts
- notification when someone adds you to a list (or at least being able to see on which lists/starterpacks you are)
- the option to close your account

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Hugo @mxworldwide.bsky.social · 16/11/2024

I'm a bit worried about people and important voices we may be leaving behind by fully converting to this site. Not everyone has the capacity to make the switch over

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meg’s malaise @megclems.bsky.social · 15/11/2024

If they had taken ME/CFS seriously from the beginning instead of stigmatizing it — how many of us would have our lives back? It’s really really disturbing. #LongCovid #MECFS #PostViralIllness

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Simone @phoenixme.bsky.social · 15/11/2024

Aussies with #mecfs! The next Parliamentary Friends of ME/CFS meeting will be held in Canberra on Monday (11am-1pm AEDT). The focus of the meeting will be: clinical guidelines and education, access to the NDIS, research funding, and chronic illness items under Medicare. Register to watch via Zoom

us02web.zoom.us

Welcome! You are invited to join a webinar: Parliamentary Friends of ME/CFS Group Meeting. After registering, you will receive a confirmation email about joining the webinar.

Australian Parliament House Canberra

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FionaMECFS @fioname.bsky.social · 15/11/2024

We must equip Australian doctors to treat #mecfs & #LongCovid according to biomedical science & break the harmful 'exercise cures all ills' paradigm @hayleygleeson.bsky.social @squigglyrick.bsky.social @croakeynews.bsky.social @natashamay.bsky.social @thenewdaily.bsky.social

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