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Wisdom 4 ME |
ME/CFS News & Advocacy |
On Saturday, December 4th, David from the ME/CFS Phone Support Group will be co-hosting a Disability talk with Social Security Disability attorney Moselle Leland and Long-Term Private Disability and ERISA Attorney Andrew Kantor
This call will focus primarily on Social Security Disability for individuals with ME/CFS, as well as those with Long Haul Covid.
Saturday, December 4th, 6:30 PM – 8 PM Eastern
3:30 PM – 5 PM PacificU.S. Dial-In: (609) 746-1155; Access Code: 915110#
In September 2021 the NIH hosted a virtual workshop entitled Beyond the Symptom: Biology of Fatigue to bring together individuals who do research on fatigue, health care providers who see patients with fatigue, and individuals who have fatigue and patient advocates. This workshop was a joint workshop of the NIH Blueprint Neuroscience Research Program and the Sleep Research Society.
‘See ME’ is a cover of the song Chasing Cars by Snow Patrol. The lyrics have been adjusted to reflect the lives of people suffering from ME/CFS. Many have become bed or housebound and live an isolated life between four walls. This song is to commemorate the millions missing who have disappeared from public life because of ME/CFS.
Created by Belgian artist Robin De Man and his son Seppe.
Christina Baltais created some artistic collages for May 12th ME/CFS awareness day. Lives Capsized – “ME/CFS can strike any age, gender (most commonly affects women), and ethnicity (people of colour more likely to be affected). It can take down even the strongest and most robust in our communities. It’s a disease that does not discriminate; overturning the lives of millions and their families worldwide.”
Source: Using Art to Bring Visibility to Myalgic Encephalomyelitis | The Mighty
May is ME/CFS awareness month, be sure to check out the #MillionsMissing hashtag to learn about virtual events in the coming weeks.
Source: #MillionsMissing – Twitter
Solve ME announced: “In our new digital format, we’ve created a video to replace our printed congressional educational materials. Share this video with your Representatives to inform them of important ME/CFS needs.”
Share this video with your local state representatives this week and help make a difference!
The ME/CFS support group currently meets virtually every third Sunday of the month at 1PM.
This month’s topic: “Having ME/CFS can be an alienating and isolating experience even under the best conditions, and during these times of social distancing perhaps some of you may find value in checking out the Zoom meeting on Sunday.”
Those interested in attending can email: Monica Z cfsbayarea@gmail.com
Due to COVID-19 the Millions Missing 2020 Event will be completely virtual. The update read, “Our community has always had a strong, powerful, and supportive virtual presence. This event will be no different.”
The Third Annual Community Symposium on the Molecular Basis of ME/CFS, sponsored by OMF, took place on September 7, 2019 at Stanford University. It brought together hundreds of researchers, clinicians, patients, caregivers, families, and advocates, and thousands more by livestream.
Dr. Mike Snyder demonstrates how big data and wearable technology can lead to better health.