Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital

How this woman with severe ME/CFS is being treated is inhumane. Please help if you can.

www.gofundme.com/f/severemerg...

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.

Screenshot of a twitter post from @ErykBagshaw. It reads: I'm very sad to report that @gemcarey has died. The family has asked me to release this statement. "Gemma passed away on 17th November 2024 after a long battle with illness. Her family ask for privacy during this difficult time." It then shows a partial screen shot of Gemma’s Twitter profile which reads Prof Gemma Carey, PhD MMedSci @gemcarey Follows you This account is no longer active Views are my own @ Ngunnawal country & Sydney @gemmacareypolicy.com

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.

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. 🙄

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

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

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

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

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

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

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

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

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

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

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

“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?

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...

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

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...

"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...

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.

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

🇵🇸

From the river to the sea ✊️🇵🇸

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.

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

Hi! I would appreciate that thank you :)

📌

#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.

Still much appreciated ☺️

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