Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) San Diego
e-NEWSLETTER ANNOUNCEMENT: ME/CFS San Diego is trying to start a quarterly e-newsletter focused on reaching patients, caregivers, healthcare workers, researchers, legislators, and the general public with information about ME/CFS, resources, and how they can make a difference. Click here to sign up for ME/CFS San Diego's e-newsletter once it starts.
We appreciate all of our great supporters, volunteers, and advocates. We would like to Thank those who provided donations on San Diego Gives Day of Giving 2023.
San Diego Gives 2023
ME/CFS San Diego is proud to be participating in San Diego Gives 2023 Day of Giving.
WHAT: San Diego Gives – Day of Giving https://www.sandiegogives.org/giving-events/sd23
WHEN: September 7, 2023 (important to give on this day to be eligible for incentives)
WHO to SUPPORT: ME/CFS San Diego
WHY: Despite the sheer number of people affected, education, awareness and research is woefully underpublicized and underfunded. Please consider a donation!
A link to ME/CFS San Diego San Diego Gives giving page is here - https://www.sandiegogives.org/organization/Me-Slash-Cfs-San-Diego
Want to know more about ME/CFS?
ME/CFS (Myalgic Encephalomyelitis Chronic Fatigue Syndrome) is a chronic, debilitating disease affecting between 800,000 and 2.5 million Americans, yet few have even heard of it, let alone understand what it means. Individuals experience a complex range of conditions including neurological, immunological, autonomic and energy metabolism dysfunction. Symptoms include significant impairment in function, post exertional malaise (PEM), sleep impairment, cognitive issues, pain, orthostatic intolerance, flu-like symptoms, sensory intolerance, gastrointestinal and genitourinary issues. The cause(s) of ME/CFS are unknown but many individuals remain ill after an initial acute infection.
https://www.cdc.gov/me-cfs/about/index.html
Want to know more about ME/CFS San Diego?
While the number one goal of any non-profit organization is to raise awareness and support a cause, the number one problem is often how to fund it. Being a relatively new group, ME/CFS San Diego needs funding to survive. Working with a modest amount of funds and dedicated, hardworking volunteers, ME/CFS San Diego provided almost 6,000 PPE items, 200 swag bags (ongoing) and hundreds of hand sanitizers to local hospitals, medical professionals, health fairs, medical researchers and communities in need. The PPE was imprinted with our logo and each item contained information on ME/CFS awareness.
Given the right funding, we can expand the operation! San Diego Gives, a fundraising program for local San Diego-based nonprofits, takes place Thursday, September 7, with a countywide Day of Giving. ME/CFS San Diego is one of many San Diego based non-profits that will participate. Last year, via San Diego Gives, we raised $1,240 and are incredibly grateful to our donors. Our goal for 2023 is to raise $2,000.
A link to ME/CFS San Diego San Diego Gives giving page is here - https://www.sandiegogives.org/organization/Me-Slash-Cfs-San-Diego
Guidestar Ranking
We finally qualified for a Gold Guidestar ranking!
PLEASE share our news!!! ME/CFS San Diego was invited, along with amazing experts, to share our lived experiences. Sharing can help connect long COVID and ME/CFS patients who are looking for answers, and help raise awareness of My Body Odyssey and ME/CFS San Diego!
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My Body Odyssey, a podcast about the rewards and challenges of exercise amidst chronic health issues, just released its newest episode about Long COVID- highlighting its similarities to many other post-viral illnesses like ME and CFS, as well as the paradoxical, often negative, impact that physical exercise has on those diagnosed with the condition.
Want to learn more about Long COVID? Click the link to hear Kaelyn Lynch’s story, as well as expert opinion from Dr. David Putrino, Director of Mt. Sinai Rehabilitation Innovation.
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.
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!
"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.
Prior to COVID-19, an estimated 17.5 million people worldwide were projected to have ME/CFS. "At least 65 million individuals around the world have long COVID, based on a conservative estimated incidence of 10% of infected people and more than 651 million documented COVID-19 cases worldwide1; the number is likely much higher due to many undocumented cases. The incidence is estimated at 10–30% of non-hospitalized cases, 50–70% of hospitalized cases2,3 and 10–12% of vaccinated cases4,5 ". ( ) An estimated half of the long COVID patients meet the criteria for ME/CFS. (https://www.nature.com/articles/s41579-022-00846-2)
For our 2023 #MillionsMissing visibility action, ME/CFS San Diego, has been providing informational swag bags (with priority to local healthcare educators, healthcare workers, researchers, and people who can help with services or spreading information). Thank you for helping us to provide ME/CFS awareness-themed awareness items!