Last year was, by all accounts, a doozy. The nation endured a spate of tornadoes, fires, floods and, of course, the pandemic. The fact that we made it to 2022 seems like a minor miracle.
Despite the many challenges of 2021, AMMES continued to grow. We welcomed two new board members: Mark Zinn and Tamara Staples. Mark is well known in the research community for his groundbreaking work on brain connectivity in ME/CFS patients. Currently, Mark is a director and investigator at the NeuroCognitive Research Institute in Chicago, IL, where he conducts studies which model brain connectivity in patients using 3-D neuroimaging EEG techniques.
Tamara Staples is our new Coordinator for Support and Outreach. As a long-term ME/CFS patient, she ran one of the largest Fibro-ME/CFS support groups in the country. Before the group closed, it was providing its approximately 900 members with monthly newsletter, webinar, an in-person group focused on education, as well as a very active Facebook group. For several years, Tamara has been in a remission that has allowed hiking, camping and backpacking to become a passion. (Stay tuned for her remission story!)
AMMES also added two new resource pages to the website. Our informational page about COVID-19 and ME/CFS includes physicians’ recommendations regarding the COVID vaccine for people with ME/CFS, patient surveys on how the vaccine has affected them, research articles on long-Covid and ME/CFS, related news items, and tips from doctors on how to treat patients with ME/CFS who contract COVID-19. You can find the page here: https://ammes.org/covid-19/
Last year, we launched a page devoted to interviews with ME/CFS doctors and researchers. Interviews are a great way to keep track of what researchers in the field are doing, and to get the details on how specialists are currently treating the disease. We will be expanding this section over 2022, adding more interviews as we go along. https://ammes.org/interviews-with-doctors-and-researchers/
The AMMES financial crisis fund has been going strong. In 2021 we distributed $41,143.86 in badly needed assistance to severely ill ME/CFS patients. We helped with rent (which was the most frequent request for financial aid), food, medical costs (including consults, ambulance fees, wheelchairs, and prescriptions), household expenses, utilities, and other basic needs. Read about the fund here: https://ammes.org/ammes-financial-crisis-fund/
In 2021, AMMES was proud to become the fiscal sponsor of the Chronic Illnesses Cohousing Initiative (CICI), a project developed by Jane Shiyah, whose daughter is a severely ill ME/CFS patient. The goal of the project is to provide green housing for severely ill patients within a supportive community. You can watch a video describing the project here: https://www.youtube.com/watch?v=4NjM3Po0F0s
Our goals for 2022 are simple. First, we need more board members! We are looking for a Webmaster to manage our WordPress website. We also would love to have a board member to take charge of fundraising. Anyone with enthusiasm, and a connection to ME/CFS whether through a friend or family member, is welcome.
We would like to expand AMMES even more in 2022. The AMMES newsletter is absolutely free! So spread the word! Our databases rely on reviews, so please post your reviews of treatments you’ve tried, and ME/CFS doctors you’ve seen. AMMES Connect is a great way to find and post free services. The more the merrier!
Above all, AMMES wishes all of you the very best for 2022!
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