Gee it’s been a really fun few months!! 🥰✨#myalgicencephalomyelitis

Every fascist uses illness and violence to disable opponents.

They disable us with covid, poverty, police violence, climate destruction, war, transphobia.

They count on ableism to make us deny this reality and to abandon each other.

Resist. Wear an n95. Use alt text. Make protests accessible.

☀️

Right now, there are people living with ME—the same illness I have—who can’t even roll over in bed, speak, or tolerate light or sound. Their entire existence is a never-ending agonizing hell. There are children missing out on their childhoods.

But if this is as good as my health gets? I will do my very best to live a fulfilling life in the body I have. After all, we really only have one life to live. So many are robbed of the opportunity altogether.

I’ve made peace with my life and my body. It’s not the life I envisioned, and it’s not the one I ever would have chosen, but it is the life I have. And in accepting that, I’ve learned and gained a lot. I hold on to hope every day that I will continue to recover.

Through these hardships I’ve come to realize that the thrill of life at its fullest can never truly be replicated, though you can try. I’ve still had many wonderful moments since becoming sick, but it’s hard to live a truly fulfilling life when you live with something like ME.

The moment I fell ill, I lost a piece of myself, and I know I’ll never get it back. Many of my memories from before I got sick have faded, blending together into a blurry haze. Yet, I can still remember the distinct sensations of doing the things I loved the most—the rush of truly living.

I’ve been isolated from the world in almost every sense. That thought carries a weight that sits heavy on me—like a rock in my stomach and pressure on my shoulders. Most of the time, I carry it quietly, just as I do with many of my symptoms. Grief is simply another symptom.

Ew. Thanks for bringing awareness to this- reported and blocked

Karen Gordon: Update on UCLH decision to not provide home based IV feeding - The ME Association University College London Hospitals NHS Foundation Trust has communicated to […]

URGENT! Please sign this petition to help Karen Gordon receive life-saving home-based IV feeding.

Karen has very severe ME and is being denied home feeding by UCLH. The lack of understanding from those she should be able to rely on is dangerous.

meassociation.org.uk/2025/03/kare...

YouTube video by Background Company Deeply Restful Kelp Forest | Underwater sounds and beautiful visuals | fish and sharks!

I'm like a baby watching one of those sensory fruit videos with this one.

youtu.be/G7LPE2PC6Y0?...

In his statement he wrote “I will continue to closely support the ME community, as I have always done.” Which is funny because he called us all keyboard warriors, told us to basically get out of bed, and then refused to issue a real apology and made people with Severe ME fight him. 💀…

A screenshot of change.org email update. A white background with a picture of someone’s arms holding up a peace sign from bed. Text that reads “Chair of ME association has resigned!”

🎉 A win for #pwme today. Thank you to all the people who worked diligently to make this happen. I know it was no easy task.

I hear you on this so much.

I hope you will carefully consider this feedback and act in the best interests of British Columbians.

Sincerely,

[Your Name]

I believe it is in BC Ferries’ best interest to explore partnerships with Canadian or more neutral international providers who do not pose potential political or economic risks to our nation.

Should BC Ferries proceed with a contract with Starlink, I will take my business to alternative providers such as Hullo Ferries whenever possible. [cont]

Starlink. Supporting a company led by an individual who has expressed hostility toward our country does not align with the values of a publicly funded transportation service that should prioritize Canadian interests.

Given the looming tariffs on Canada by the Trump administration and Elon Musk’s increasingly problematic stance toward Canada—including discussions around annexation and questioning our great country's legitimacy—it is deeply concerning to see BC Ferries entertain a business relationship with

*Template*

Dear BC Ferries,

As a resident of Vancouver, I rely on BC Ferries as an essential mode of transportation. I was recently made aware of BC Ferries’ consideration of Starlink as an onboard internet provider, and I strongly urge you to reconsider this decision.

British Columbia residents, BC Ferries is looking to implement Star Link into their services.

Please consider taking 60 seconds to let BC Ferries know we do not need that trash here. Anyone can fill the form out, you don't have to be from the country.

feedback.bcferries.com/collection/c...

Can you explain more about why you feel I'm over thinking? I don't think that including disabled people in the conversation is necessarily overthinking if that's what you're getting at?

Importantly, we must factor in and include that many house and bed bound people rely on these platforms to have a social life. Many people have built up networks and social circles on these apps and don't have the energy to start over somewhere else.

i delete my posts a lot and wanted to give you some insight into why i do that:

1. i asked a question and got the answer i needed
2. vibes were off in the replies
3. i came back 10 minutes later and disagreed with myself
4. i reread it and thought i sounded annoying

toe beans

A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green.

I've been thinking about how to explain the challenge of living with ME/CFS and created this cartoon visualization.

Imagine the life of someone without ME is a rainbow of activities that each take a certain amount of energy.

ME limits your energy, and thereby the vibrancy of your life.

(source: collaborative post by @alexisme.bsky.social and 5 others)

Your support can help ensure she receives compassionate, ME-informed care and enable her to continue her fight for appropriate medical treatment.

To read more about her story and sign a petition to support her please visit:
bit/ly/linepetition

This coercion stems from a misunderstanding of ME, a complex biological illness—not a psychiatric disorder. We must act now to stop this harmful intervention.

Please share this post with the link or donate if you can.

bit.ly/DonateLine (case sensitive)