Black cap saying 'Cure ME/CFS' on the front, church and people in the background
To help fund my work on @crunchme.bsky.social I'm selling 'Cure ME/CFS' caps!
If you'd like to buy one, here is the link to my store:
yewjk2-s6.myshopify.com
Shipping only in the UK for now while I get the ball rolling!
Only 5 left of this first batch 👀
#MECFS #LongCovid
Would love to buy from Australia. Any chance of it just saying Cure ME?
I really wish #PEM was just worsened fatigue.
It is so, so much more than that.
#MECFS
So excited to share these messages of hope & solidarity for 2025! Huge thanks to all who contributed.
#TheRedTreeandME #myalgicencephalomyelitis #LongCovid #pwME open.substack.com/pub/theredtr...
Haha me too. I’d take the win.
long covid isn't just stopping people from working, exercising, socialising, living independently. it's also snuffing out patients' dreams of having children, and complicating pregnancy for those who are able to conceive www.abc.net.au/news/2024-12...
Yes I’ve had this one lying flat. I think it’s called the Laptop Laidback
Living w/ ME: Sadly, the longer it takes to get a diagnosis, the worse the condition can get, and before you know it, you’ve lost your job and your quality of life has taken a nosedive. The stigma surrounding ME is a massive barrier to getting the help we need. wellcomecollection.org/stories/livi...
An image with a yellow background and six smaller images with accompanying text. The top in orange text reads "it's okay to.... holiday edition." The first image is an orange and red square that reads "healthy boundaries healthy space" with the text "remind people of your boundaries," the next image is a yellow megaphone with the text "advocate for event precautions." The next image is of a woman with dark hair a brown skin and t-shirt wearing a yellow mask with the text "mask at the holiday party." The bottom left image is of a yellow cartoon family and a heart with the text "start your own traditions," the next image is of a man wearing orange sitting with his head in his hands and the text "experience grief and sadness." The last image is a text message bubble saying "thanks for the invite, I won't be able to make it" underneath it says "turn down invitations" oliviabelknaptherapy.com
Some holiday reminders for the COVID conscious community 🧡
wow this is so cool
Re physio, a thorough understanding/education of PEM is key and central. Then the services provided to make it accessible to ME patients: what's the waiting room like eg can patients lie down? do you mask? do you home visit? Do you provide gentle hands on work (often most helpful)
There are lots available online.Linking patients to the resources already available eg Bateman Horne Center, Physio4ME website, MEAction etc helps new patients learn where to look for other resources and also build their online community too.
This is pretty bad. Good day to share a Bsky starter pack with friends who might like some help getting started on here.
Here’s mine for #NEISvoid, but there are so many more good ones out there.
go.bsky.app/KnwWePQ
@edyong209.bsky.social can't wait to see your talk at the #UnitetoFight conference yesterday. Everyone saying it was the best speech of the day. Any chance you can post it for patients like me who were too ill to watch?
@putrinolab.bsky.social justice wanted to say thank you for your incredible posts/tweets. As an ME patient, it’s incredible to have a researcher share their knowledge and also their feelings so openly. I can’t tell you how supportive this feels and how much hope it brings to my heart.
When Hitler Stole Pink Rabbit www.youtube.com/watch?v=32PW.... A favourite book as a child that I reread over and over.
