Just want to say thank you for raising awareness. Im currently 2 months post op from ces and nobody can ever prepare you for what this syndrome entails. Without a doubt the hardest thing I've ever faced in my life. Thanks for pushing the knowledge and positive messages

Every day i wake up and think will today be the day i void myself so i can go to A&E!

very proud, amazing achievement with so few resources, what an impact you've made

If only this understanding could be done alongside pain clinics

This is the best one....I don't actually have CES...I have incomplete CES!!! AHAHAHAHAHAHAHAHAHAHA

Nailed it

How do i get help ?.

My 2nd neurologist...1st one lost my scans and it took me two years to get that sorted...says migraines!!! 2nd neurologist says migraines!!! So when i get upset says you need CBT and once we've dealt with your depression we can move on...bye...Off to pain management for CBT...CBT i can only describe as something like a benefits assessment...totally pointless and degrading af!!! Back to my 3rd neurologist...cant possibly be your spine and would be crazy to do surgery...have some new pain SSRI meds even tho the lost 10 did nothing...discharged!!! HELL!!!

I can walk(even tho i have problems walking like the feeling of walking on marshmallows)...i can bend over and touch my toes no problem...Means nothing absolutely nothing...

Specialists...Please dont ever offer us CBT EVER!!! It's not what we want!!!! What we want is the respect we deserve!!!

I need CBT therapy cos i wanna drag my specialists over the table for being a self entitled prat!!!