Fighting To Be Seen

ME/CFS - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome A very real disease with real sufferers. Here on this blog I’ll do my best to spread awareness so that the stigma around our illness can end.

[chronically-persistent]

Exciting news friends! ICANCME (the research network I’m a part of) is officially going to be hosting a conference in November! The conference focuses on Nothing About Us Without Us— the idea that research cannot be conducted about us without including patients at every stage— and will take place over three half-days with distinct themes;

November 4th - Day One is ME Foundations and Current Research

November 5th - Day Two is Reality of Comorbidities and Impact on ME Research

November 6th - Day Three is Collective Deep Thinking in ME Research Design

This conference is free to attend and virtual! It is not just for researchers, but also for patients, caregivers, loved ones, and anyone else curious about ME and research. If you’d like to attend, please register at the link below! You can also find the full conference program on our website.

And, if you can, please share this around to your circles! Thank you!

https://icancme.ca/research/2025-me-conference/

[myalgicencephalomyelitiscfstom]

The creator of a very popular ME/CFS awareness image has taken feedback on board and updated it

"Life shrinks with ME/CFS":

Update source:

update direct:

Unsupported client – Canva

hi-res PNG

higher-contrast/color PNG

[chronically-persistent]

Exciting news friends! ICANCME (the research network I’m a part of) is officially going to be hosting a conference in November! The conference focuses on Nothing About Us Without Us— the idea that research cannot be conducted about us without including patients at every stage— and will take place over three half-days with distinct themes;

November 4th - Day One is ME Foundations and Current Research

November 5th - Day Two is Reality of Comorbidities and Impact on ME Research

November 6th - Day Three is Collective Deep Thinking in ME Research Design

This conference is free to attend and virtual! It is not just for researchers, but also for patients, caregivers, loved ones, and anyone else curious about ME and research. If you’d like to attend, please register at the link below! You can also find the full conference program on our website.

And, if you can, please share this around to your circles! Thank you!

https://icancme.ca/research/2025-me-conference/

[brittmarihaxoxo-blog]

[chronically-persistent]

I’m tired of crying about this illness. Today is ME/CFS Awareness Day, and the outpouring of support on social media has been incredible. It warms my heart to see so many, patients and well people alike, banding together.

But when people share their stories, it breaks my heart. We may not live the same lives, but I know the feeling of loneliness, grief, depression. Losing the ability to do the things you love. And losing support because of all this bullshit misinformation.

I want to stop crying, wasting precious energy on this damned illness, but every time I see what our community has been through it makes me sick. Yuppie Flu? Really? Millions of people become critically ill and the response is “they’re just lazy, it’s a Yuppie Flu.”

The rest of the world may not be aware of what’s going on, but to ME patients - I see you. I hear you. You are all so goddamn strong and no matter what anyone says, you are important. And to able bodied people and other unwell folks who find this post - thank you for reading. If you know anyone who has ME, tell them you’re there. Tell them you care.

We are stronger than this illness, and we can be even stronger together.

[clitdad]

Yeah

[lovebythemoonxo]

Me this week

[chronically-persistent]

There’s a lot of burgeoning research revealing that ME is comparable to AIDS, MS, and end-stage renal disease in terms of QoL. Now, I don’t think that comes as a surprise to us living with it, but today it just… I don’t know. It hit different today. I spent my early years being told I was fine, I was just lazy, nothing bad was going to happen to me. Never that my illness was Serious, even Deadly.

It’s hard to stomach that. Rationally I know it is a serious disease, but to hear scientists suddenly turning and going “yea, pushing your body will have consequences and here’s the million reasons why”, and then having to explain this emotional dump to those around you? I dunno. I’m having a hard time getting my feelings across these days. I’ve never been great with words (when it comes to explaining myself) but especially right now. Probably the brain fog.

Sorry this isn’t a positive post today, I’ve been absent for months only to come back and drop this melancholy. But, I’m sending love to all ME patients out there reading this, and reminding you that we’re in this together. We’ve got each other. Take care of yourself, and treat your comorbidities where you can. You are all important.

[fibro-memes]

[fibro-memes]

[fibro-memes]

[myalgicencephalomyelitiscfstom]

Shivaani Chugh (@shivaanichugh) on Threads

Some truths about living with an illness that no one talks about: 1. The constant battle between accepting your body and wishing it worked

[chronically-persistent]

I hate being sick. That’s probably not surprising to most people but to some I’m sure my life looks idyllic. I don’t work 9/5, I don’t pay bills, I don’t cook for myself most of the time, I sleep 12 hours a night. Yet, they don’t see what goes on under my skin, feeling like a part of me is dying every day. When I’m too exhausted to move or even breathe, when I feel my muscles seize up and stop working. When I can barely eat and become paralyzed with pain.

Being chronically ill is being imprisoned in your own skin. Yearning for more and being chained to an intangible wall. I always try to spread positivity here but sometimes it’s hard to ignore the weight of our circumstances. This is a reminder that grief comes and goes in waves, and you should never be made to feel bad for feeling bad.

We’re going through it every day, and it isn’t always sunshine. But I’m glad you’re here.

[myalgicencephalomyelitiscfstom]

Weary and Wary

I don’t usually post to my blog twice in the one week, but today’s Irish Times article (see the link below) is worth the additional ink. Ple

"Weary and Wary"

The "lessons to share regarding how you do what’s right for you regarding your illness" of one person with moderate ME

I also liked their previous blog post, "Riddles, Relationships and Alterations", describing the early period after being diagnosed where she lost touch with some people & people didn't realise how ill she was

Riddles, Relationships and Alterations

As autumn approached that year, my GP threw a riddle at me. The flu vaccine. Her file stated I was in the vulnerable category due to ME, and

The author is a published writer

[spoonfulofhannah]

One way to know if you’re ableist:

You base someone’s worth on their productivity and what they can offer to capitalism.

[extreme-dyke-syndrome]

POV: you are physically disabled

[myalgicencephalomyelitiscfstom]

Blossom Tea with HB 🌸 Disabled Writer (@teawithhb) on Threads

I used to be someone who used ‘fighter’ language regarding chronic illness- being a ‘warrior’ ’battling my illnesses’ etc etc. The thing is,

[chronically-persistent]

A reminder that no matter what anyone (and yes, that means anyone) says, you are not worthless because you are sick. You are just as important as anybody else, no matter your limitations. People who say otherwise can't see the forest for the trees, and are not worth the time/energy.