Severe ME Awareness Week
Remembering those we have lost, and sharing glimmers of hope for the future...
Living with Severe ME
About 25% of Myalgic Encephalomyelitis (ME) patients will be severely disabled.
They might be:
housebound and bedbound 24/7
Unable to sit up in bed much or at all
Unable to tolerate light or sounds, and have to stay in dark rooms with eye masks and ear protection
In need of 24 hour care
Unable to eat or drink, and need to be tube-fed
Louise's story: “I am bedridden in a dark room for weeks on end. It's not something one can easily describe, but I do appreciate when people try to understand.
Remember that ME is not tiredness - nothing can portray the complete annihilation of energy we experience and the effect that has on daily life. Last week I was physically struggling to swallow food. Many struggle with basic tasks like brushing teeth. I can't engage in my usual hobbies.
But, there is always hope, and simple understanding and accommodations
can make all the difference in the world.” Next to the story is a photo of Louise, a white person with shaved hair, smiling gently to the camera.
Speaking of hope, Decode ME’s Initial DNA study results have been published. Intial findings show:
Your genes contribute to your chances of developing ME/CFS.
People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population.
Today is #SevereMEDay, where we remember those we have died from severe ME and to advocate for better understanding, research, and support for those living with this debilitating condition.
Our thoughts are with them, and their loved ones left behind.
![This is a poster, on a teal blue background with pink stars.
A headline in pink says "Trans day of visibility."
Text in white says "more info on our Instagram: @pcsrandcwales"
In one of the pink stars, it says "T D O V demo, Tuesday 31 March, 12-1pm, Outside Tŷ William Morgan (UK Gov Building), Speakers welcome."
In another pink star is a picture of a banner that says "P C S fighting for [unreadable] services" in English and Welsh.
At the bottom, on a dark blue background, is the P C S logo and the text "Public and Commercial Services Union."](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:dawivhsr4ydsrhfuyu5k4nov/bafkreieyanqmssh6y3iaxcshhoby76umfte2s6pztig5yssiz4oiufbchu)
![Time for a new chapter! ✍️
After five years with FTWW, I’ve decided to move on at the end of April to focus on my health and my writing.
Since graduating from my MA in Creative Writing, balancing writing and my job with my health has become increasingly difficult. I’ve reached a point where I need to see if I can make the dream of being a 'proper' writer a reality.
I am so proud of everything we’ve achieved at FTWW and leaving isn’t an easy choice. A huge thank you to my colleagues and the community—I’m looking forward to continuing my support as a volunteer and ME Champion.
What’s next? Alongside my writing projects (including finally finishing my novel), I’ll be taking on a limited amount of freelance [writing / editing / PR / marketing] work. If you’d like to collaborate, please get in touch!](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:55kmd2aoquz6y3wu4sqy2wmn/bafkreiff4evsj4xzhgdv7qizkjqlshi2qgvric56hmfvkenz5brje3m6pu)
