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CTN Lite Patient & Caregiver Survey: Shaping the Priorities of OMF's Clinical Trials Network
Open Medicine Foundation (OMF) has launched CTN Lite — a new decentralized clinical trials program designed to bring meaningful treatment research directly to patients, faster and more accessibly than traditional trials.
This survey asks people living with symptoms of ME/CFS (regardless of trigger) — and caregivers and loved ones who support them — to help shape CTN Lite directly: which symptoms and biological systems to prioritize, which treatment categories matter most, and how to measure what truly improves function and quality of life.
We value every response and will carefully consider...
![Tom Kindlon's ME CFS & related page: News, Research and more is feeling sad
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I've just changed my social media profiles: I have now spent 32 years severely affected with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. In my case, I have been largely housebound with dozens of debilitating symptoms since the age of 22 (i.e. nearly 60% of my life). [I first became ill at age 16, 37.5 years ago, but was initially less severely affected but was undiagnosed].
I'm one of millions around the world.
We need more public and private money to make research progress soon, the quicker the better: my life and the lives of others are passing by.
For anyone interested, here's a list of ME/CFS research funds: https://europeanmecoalition.com/resources-for-researchers/ . A longer list of research initiatives is here, though some of those are not looking for funds from the public.
https://me-pedia.org/wiki/Category:Research_initiatives
Here's my story as told in the Irish Independent in 2015: 'No one chooses to have ME - everything changed when I became ill' https://www.independent.ie/lifestyle/health-wellbeing/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/a/150853043.html
#MEcfs #PwME #MyalgicEncephalomyelitis #millionsmissing #severeME
Woman lying in a hospital-type bed
#MEACTION
M.E. is a career-ending, life-destroying disability.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreidjjy3tazg4wequxjoa4iivmsxi5zaz5hchxyagbvty7sowrhxtpu)
