For the past nine years, Anna, a wonderful ME/CFS advocate, has been hosting a unique event. Entitled “Tea Party for ME,” this special virtual day brings an international network of people affected by ME/CFS together. As part of OMF’s May Momentum campaign, we are excited to share this opportunity for the community to connect and fundraise in support of urgently needed ME/CFS research.
Anna explains, “I’m hosting my “Blue Sunday: Tea Party For ME” for people with ME/CFS, their family and friends. I strongly believe that we need and deserve a dedicated day of fundraising, but also a day where we can come together to mark and celebrate our resilience and strength in the face of this cruel and life-altering disease.”
This year’s 2021 event will take place on May 16. You can donate, learn more, or join in, by visiting Anna’s OMF fundraising event page. The proceeds raised will support OMF’s fourth annual May Momentum campaign!
OMF is honored to share an interview with Anna in anticipation of this unique virtual event.
How long have you had ME/CFS?
Ten years. The onset of my ME/CFS was very sudden. One week I was a history graduate preparing for interviews, and the next I was in a makeshift bedroom in my parent’s dining room as I was too unwell to use the stairs, or get to the bathroom without help. In my decade with ME/CFS I have been so lucky to see progress, which to me has been momentous, but to an outsider might not look like progress at all.
What first inspired you to create Tea Party For ME?
I wanted to feel a part of something after years of isolation and being on the outskirts of so much of life. For my birthday in November 2012, I was too unwell for visitors so I had a virtual party where friends posted photos of them toasting me with tea and cake.
That virtual birthday party became the inspiration for the first Tea Party For ME the following May. As people with ME, there is so much that is now out of our reach. I wanted the fundraiser to include those who are so often left out. “Blue Sunday” is now something that so many people look forward to each year. I have also found tea and cake to be a very good way to engage those outside of the ME community!
What helps you remain hopeful and optimistic despite battling ME/CFS?
Knowing there are individuals and organizations like OMF who are fighting for us, who believe us, and are working tirelessly on our behalf.
Have you been able to connect with the community and a lot of new friends through Tea Party For ME?
Yes! Although it’s hard to think that others are experiencing ME/CFS, it has been the ultimate silver lining to find people online who can relate and understand. I mostly socialize online now due to my health.
Each year more and more people hear about the Tea Party For ME and so there are new faces and new friendships made by me and others who join in. Those who are able, sometimes meet up in person on “Blue Sunday” (the day of the tea party) for the first time after years of online friendship and support.
How did you first hear about OMF?
Through social media. OMF Ambassador Jennie Jacques joined last year’s Tea Party For ME event, and I’ve had the honor of being asked to judge the Bake For ME/CFS Challenge.
What do you most hope to accomplish with this year’s Tea Party For ME event?
I hope this event can break up some of the isolation for people with ME/CFS. I also hope it can show people with ME/CFS that there are organizations like OMF working tirelessly to help and support us. I find ME Awareness week can feel a little heavy at times seeing so much suffering and hearing that so many people are affected.
“I hope this event can be a lighthearted way to bring the community together to raise a cup and saucer to their inner strength and their tenacity in the face of ME/CFS.”
OMF sends our heartfelt gratitude to Anna. Not only is she raising funds to accelerate urgently needed research, but she is inspiring advocacy, strengthening the community, and spreading hope.
Averting a second pandemic:
Open Medicine Foundation leads groundbreaking international study of
Long COVID’s conversion to ME/CFS
AGOURA HILLS, CALIF. — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome — to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.
Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”
OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.
The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.
In a significant percentage of patients, infections preceded their development of ME/CFS. For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.
The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS. Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.
About Open Medicine Foundation
Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of five prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.
Heather Ah San
Development and Communications Manager