#MyalgicE Patient Advocacy 4 better treatment & cure. UR life/dreams are gone before ur eyes! Federal Advocacy Research Education & Funding #Dysautonomia
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ALT Two free caregiving webinars on November 1 and 15 at 3 PM ET for National Family Caregivers Month. Dark brown background with cream accents. Text: November 1st 3 pm Et "Things We Caregivers Wish We Had Known" roundtable discussion facilitated by Denise Lopez-Majano “Being on the Same Team: Strengthening Relationships Through Chronic Illness” with Kim Moy of Caregiver Wisdom. November 15 3 pm Et
ALT Announcement that the implementation of the OMB Rule is delayed until December 11, urging action to block the rule entirely.
![Tom Kindlon's ME CFS & related page: News, Research and more is feeling sad
.
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](https://pbs.twimg.com/media/HQUlDqiXcAA7051.png?name=orig)
ALT Tom Kindlon's ME CFS & related page: News, Research and more is feeling sad . 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
ALT Open Medicine Foundation discusses progress in precision medicine for ME/CFS and Long COVID treatments.