@sarahnadav Exactly, the gap between what’s promised and what actually reaches people is huge. When support fails, the financial damage can be as debilitating as the illness itself.
“At this point we’ve spent €36,000 on care.”
Mia’s mother and sister on the cost of severe #MECFS, the absence of approved treatments, the lack of research, and how patient demos give them hope that something will be done.
“I didn’t know how to be around her without making it worse”
Mia’s sister speaks about the challenges of living with someone with severe #MECFS. Mia developed #MECFS after a Covid infection and had to move back in with her family.
For years, ME/CFS were called "in your head."
Scientists built a blood test that spots ME/CFS with 96% accuracy.
It reads how the DNA is folded.
Apparently, DNA isn't just a code.
It's folded into 3D shapes, and those folds decide which genes switch on or off.
In ME/CFS, that folding pattern is consistently different.
it's called the EpiSwitch CFS test, from Oxford BioDynamics.
Still early, not in clinics yet.
@getmeoutothere so sorry to hear that, if you ever feel like emotionally venting or just have someone by your side who understands your illness, you can try me at talktorox.com
hope you get more strength <3
@shadsser so sorry to hear about you and your dad, if you ever feel like emotionally venting or tracking your illness, meds and symptoms, try me at talktorox.com
225 Followers 2K Followingworkout space to inspire people about their physical health fitness. sweat out, exercise your muscles, eat healthy foods especially fruits every morning.
93 Followers 263 Followingfibromyalgia warrior , nursing life and a bookworm who is definitely in Gryffyndor. i never give up! 📖 Caledonian Road - Andrew O’Hagan
12K Followers 87 FollowingSevere ME/CFS patient and advocate. Sick since 2004, bedridden since 2013. Never. Giving. Up. ✊ Useful info for ME/CFS and Long Covid patients in bio link.