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Donate to Help Save Richard from Permanent Brain Damage, organized by Birgitta Abrahamsson My son Richard has a rare, progressive neurological condition and u… Birgitta Abrahamsson needs your support for Help Save Richard from Permanent Brain Damage

Critical. Time sensitive. Life or death.

This needs people dedicated to sharing it frequently and consistently.

ME community and allies, please show up for this. If you can share on other platforms that helps too.

gofund.me/d59d7aabc

Donate to Help Save Richard from Permanent Brain Damage, organized by Birgitta Abrahamsson Help Save Richard from Permanent Brain Damage My son Richard ha… Birgitta Abrahamsson needs your support for Help Save Richard from Permanent Brain Damage

I know I’m not really here much (I check messages/notifications though), but I wanted to share the gofundme of someone in the ME community.

This is urgent life or death. I don’t have much energy to promote this, but I hope you all will take up the cause:

gofund.me/8da0ebb46

Donate to Help Save Richard from Permanent Brain Damage, organized by Birgitta Abrahamsson My son Richard has a rare, progressive neurological condition and u… Birgitta Abrahamsson needs your support for Help Save Richard from Permanent Brain Damage

Critical. Time sensitive. Life or death.

This needs people dedicated to sharing it frequently and consistently.

ME community and allies, please show up for this. If you can share on other platforms that helps too.

gofund.me/d59d7aabc

Donate to Help Save Richard from Permanent Brain Damage, organized by Birgitta Abrahamsson Help Save Richard from Permanent Brain Damage My son Richard ha… Birgitta Abrahamsson needs your support for Help Save Richard from Permanent Brain Damage

I know I’m not really here much (I check messages/notifications though), but I wanted to share the gofundme of someone in the ME community.

This is urgent life or death. I don’t have much energy to promote this, but I hope you all will take up the cause:

gofund.me/8da0ebb46

Called. I'd appreciate your help in preventing the government from blasting my favorite place in the world to hell.

Sorry to hear this. 🫂💜

We NEED non-disabled people to care about this. The government clearly doesn’t care what disabled people need or want. We need the rest of you to raise hell and get them to back off. This is literally life and death.

Alberta Disability Assistance Program engagement Share your feedback to help shape the Alberta Disability Assistance Program (ADAP).

The GoA has disincentivized the transition back to AISH in December 2027 by requiring that they provide a new disability assistance medical report. Those with "exceptional cases" will not have to do this. Here is the link to the public survey open until Sept 12 www.alberta.ca/alberta-disa...

We can’t keep jumping through all their hoops. This is killing us. Please fill out the survey. Please call your MLA. Get everyone you know to. Please. We can’t keep doing this.

We can’t keep jumping through all their hoops. This is killing us. Please fill out the survey. Please call your MLA. Get everyone you know to. Please. We can’t keep doing this.

I suspect there are much cooler ones available out there now than 20 years ago, so there’s that!

DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
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Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s

Graphic 1 of 4. DecodeME: The Results graphic. The slide says: ‘The signals discovered are involved in the immune and nervous systems, indicating immunological and neurological causes to this poorly understood disease’.

Graphic 2 of 4. DecodeME: The Results graphic. The slide says: ‘At least two of the signals relate to the body’s response to infection’. Beneath this is an image of green germs.

Graphic 3 of 4. DecodeME: The Results graphic. The slide says: ‘Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS’. Beneath this is an image of a person curled up in bed feeling ill.

Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘All of these signals align with how people with ME/CFS describe their illness’.

(2/2)

Graphic 1 of 4. DecodeME: The Results graphic. At the top in bold lettering, it says ‘Main Findings’. Beneath this it says ‘Your genes contribute to your chances of developing ME/CFS. Other key findings are on the following slides.

Graphic 2 of 4. DecodeME: The Results graphic. The slide says ‘People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population’. Beneath this is an image of a DNA helix and a magnifying glass.

Graphic 3 of 4. DecodeME: The Results graphic. The slide says ‘These lie in many places across the genome, and do not impact just one gene’. Beneath this is an image of a DNA helix and graphs.

Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS’. Beneath this is a blue magnifying glass with a DNA helix.

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more.

These findings reflect the lived experience of thousands of #pwME.

Thanks to all our participants & supporters who made this possible!

Read a summary of our results: shorturl.at/pgsjk

💔 I don’t have words for what Andrea meant.

I know it's hard to hold onto that hope. *hug* I know life shifting in the ways we want it to isn't a guarantee. But it's a possibility. So I hope it works out eventually. 💜

I just hope that at some point you'll be able to get back to something that clearly means so much to you. 💜

Kudos for sticking to it despite all the others who don’t though. 💜

*thanks

I don’t have an aranet, but I do have a monitor that seems to be pretty reliable. :) Tanks for thinking of me!

I’m trying to figure out what I’m going to have to give up in order to be able to do this (I have severe ME, I can’t just do more without something else having to give) and I can’t stop crying.

Seriously what do I give up? Cooking? Bathing? Laundry? The last of my few connections to humanity?

Everyone is talking about trans issues today. No one is talking about the cruelty and harm enacted on disabled people. If you’re trans AND disabled, today is a hell of a day.

So we have to hoop jump (which for people like me, it WILL irreparably harm our health) just so the Alberta government can take away the paltry amount the federal government deigned to allocate for those who qualify. And no one is talking about it except disabled people.

Since no one’s posting about it here, AISH recipients all got letters today saying we have no choice but to apply for the disability tax credit as a requirement to apply for the Canada disability benefit when applications open up. And they WILL be clawing back the entirety of the CDB.

Quit looking for reasons why you don't have to care.
Equally, quit looking for things there's "nothing we can do about".
Focus on your privileges + positions and what they can provide for others in your life who don't have them.
Make caring sexy, make it desirable and don't stop doing what you *can*

If people think that disabled lives other than their own are an acceptable sacrifice for the theoretical role a social media platform plays in democracy, and that what apps you use is more important than keeping your fellow citizens alive, democracy is long gone.

Great if you were able to, but I am fully against a ban. There may be life after Twitter for you, but that’s not going to be universal. Some people are in far more precarious situations. And we shouldn’t be throwing them under the bus. Boycott if you want. A ban would be cruelty.

I’m all for boycotting X, but banning it would cut off a huge portion of disabled people from their community and mutual aid that’s keeping them alive. Not everyone can migrate here for a variety of reasons (or we can’t post openly because we can’t lock our accounts and gov keeps tabs on socials).