On May 12th each year, we focus a day on learning about, raising awareness of, and campaigning around Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS). ME/CFS dramatically limits the activities of millions of people across the world. In its most severe form, this disease can consume the lives of those affected. For the first time in history, an alliance of organizations from across the globe is jointly launching World ME Day on May 12th 2022.
Solve M.E. is a proud founding member of the World ME Alliance, made up of senior leads/representatives from national ME/CFS organizations working together to achieve change for people with ME/CFS at a national and international level. Together, we’re battling the stigma associated with ME/CFS and calling for more research funding into this disease.
The theme for this year’s World ME Day is #LearnFromME. It aims to highlight how people with ME/CFS and experts have a huge wealth of knowledge that could help to improve the management of this disease across the world. But even with the best management approaches that are available, there is no effective treatment or cure for ME/CFS.
Long Haul Voices Episode One is Here!
In honor of World ME Day, Solve M.E. will also be releasing the first episode of Long Haul Voices, a mini-series created in partnership with Unfixed Media Productions that amplifies the experiences of individuals with ME/CFS and Long Covid. By highlighting these community stories, we’re honoring the core theme of this year’s #WorldMEDay: “What can the world #LearnFromME?”
In this episode, we explore how chronic diseases affect people’s lives and identities. Watch the first episode here.
Maryland Governor Issues ME/CFS Proclamation for May 2022
Maryland Governor Larry Hogan recently proclaimed May 2022 as Myalgic Encephalomyelitis Awareness Month and on May 10 lit the Maryland Government House blue to mark the occasion.
The Governor also joined his community in commemorating May 12 as the 30th anniversary of ME/CFS Awareness Day.
“Maryland joins in this effort to help educate and spread awareness of the disease, the need for research and appropriate medical care and to support individuals and their families living with myalgic encephalomyelitis,” the proclamation states.
Special thanks to the Maryland state chapter of #MEAction, and to Solve M.E. Board Member and Secretary of the Maryland Department of Aging Rona Kramer for her ongoing leadership and advocacy.
Migraine and ME/CFS
In honor of International ME/CFS Awareness Day, our friends at the Association of Migraine Disorders released a blog on the connection between migraine and ME/CFS. This blog summarizes commonalities between the diseases, research and resources.
In a study interviewing 67 ME/CFS patients, it was found 84% had migraine, 81% had tension headaches compared to 5% and 45% of controls. Read the blog post here.
In March, we partnered with the Association for Migraine Disorders to host patients, researchers, and doctors for a discussion of ME/CFS, migraine disorders, and their impact on women’s health.
Watch the recording here.
Strengthen ME/CFS Research Efforts By Joining Our You + ME Registry
ME/CFS is one of the few remaining, highly prevalent, debilitating diseases about which very little is known. One of the best ways to help increase understanding of this debilitating disease, and in turn, make it more visible, is to contribute your health data to the You + ME Registry.
You + ME is an online disease registry designed to help researchers and clinicians better understand ME/CFS, uncover patterns in the disease, identify treatments, and improve quality of life.
Patient data and the stories behind it matter. People living with ME/CFS every day know this disease best and have invaluable information to share based on their lived experience. You + ME is a way to connect patients to researchers; giving patients a platform to share what they know about their disease and inform and influence research; helping us unlock causes and treatments for this disease.
Even if you don’t have ME/CFS, you can still join You + ME as a control participant. To be able to understand what has gone wrong with someone who has developed an illness, we need to be able to compare their biology to someone without the illness being studied. Control participants provide those points of comparison and are critical to the success of You + ME.
Whether you’re a person with ME/CFS or an ally in the cause, we hope you’ll consider joining You + ME today.
Use Our Online Action Kit to Stay Involved During Advocacy Month!
Even though Advocacy Month registration is closed, you can still get involved with our online actions by using our action kit! Ask your elected officials to support ME/CFS and Long Covid policy solutions by clicking here.
There are many ways you can be involved with Solve M.E. and the critical work we do every day. Your gift to Solve M.E. allows us to innovate, research, and create initiatives that empower millions of people to fight this disease as one powerful whole.
You can double your impact by joining Solve M.E.’s $500k double your money challenge!
A generous donor has committed to donating one dollar for every dollar raised, challenging us to reach $500,000. All gifts made to Solve M.E. from now until June 30th will be matched up to $250,000!
Your gift today will help us make lasting change for those with ME/CFS.
