Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) San Diego

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On 9/19/2022, one of ME/CFS San Diego's Board Members, Chrisanna participated in MEAction's Millions Missing September Action in Washington D.C.

What did I do today??

Wonderful people, everyone checking on everyone and resting encouraged.

No one got arrested when they took additional action even blocking a street - the police blocked roads on a perimeter around and directed traffic around… and were super nice about it.

My daughter and I stood across the street from the human road block (see their other posts) (organizers knew we were ready to step in to help others w anything) - one law officer who appeared to be the team lead of Secret Service on bikes (he’d asked a portion of us a block back if we wanted them to block the street for us…?!!) that trailed the group and often checked in on people - he asked my daughter who was near to him if the protestors not leaving hr crosswalk wanted to be arrested and she gave the answer we knew to be true ”Yes!”

He said he was again calling DC Metro police again, giving them a headcount and wheelchair count. Alas, DC police maintained the road blocks we realized were in place (extremely few cars came down a section of 17th…) and definitely helped keep people safe but ultimately arresting and transporting sick people, some in wheelchairs, wasn’t likely a good look plus more trouble than usual. They were extremely polite, said it was one of the better protests to have worked, and at the end wished a good day.

It was a hot day - 87 feels like 89, humidity only 48 but that pesky dew point was 62. I’ve been asleep for hours since, just ate some dinner and took extra supplements that hopefully boost my recovery so I can go on to other things I have to do her this week.

Picked up a new hashtag and slogan #StillSickStillFighting 15 years for me.

#MEAction #MEAwareness

Thank you to all ME/CFS Advocacy groups, Patients, Friends, Family, and Supporters who helped advocate for the ICD-10-CM code change. It may seem like a small thing to many but this will enable tracking of ME/CFS and other Post-Viral Fatigue Syndromes which is used in epidemiology, health management and clinical practice, and billing. Models from health records (for example, mortality and morbidity statistics) will now be able to get ME/CFS data. ME/CFS often is not covered by insurance but now our code can be used by medical Medicaid, Medicare, and insurance and disability insurance companies in their determination of benefits which might help transparency for patients. These codes should be used by 10/1/2022.

We appreciate all of our supporters who helped spread awareness and or supported ME/CFS San Diego Thursday, September 8th 2022, during a special 24-hour online fundraiser called San Diego Gives. We here at ME/CFS San Diego loved connecting with you.

The power of community cannot be underestimated. Thank you for your continued generosity and support!

ME/CFS PPE Distribution counter

"Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion). It causes dysregulation of the immune, nervous, and energy metabolism systems. It is often triggered in susceptible people after viral infections." (https://www.meaction.net/about/what-is-me/) Currently, there are no cures or medical therapies to treat ME/CFS and only about 5% of people ever recover.

Alarmingly, medical professionals predict a tripling in the number of people disabled by ME/CFS as a result of COVID-19. ( ) We already have an estimated 2.5 million Americans and 17 million people worldwide struggling with this complex, painful neuroimmune disorder.

For our 2021 #MillionsMissing visibility action, ME/CFS San Diego, with the help of BBD Embroidery, is raising awareness of ME/CFS and, at the same time, providing PPE (masks and caps) for with priority to healthcare workers. Thank you for helping us to provide ME/CFS awareness-themed masks and scrub caps!