Long Haul Voices
Thank you for watching our series, Long Haul Voices: Living with Long Covid and ME/CFS!
We are proud to have created Long Haul Voices in partnership with Unfixed Media Productions to amplify the experiences of individuals with Long Covid and ME/CFS, the experts devoted to improving their care, and the challenges surrounding these largely invisible, poorly-understood diseases that affect a rapidly growing population.
As you learned through the series, the most prevalent Long Covid symptoms — crippling fatigue, post-exertional malaise and cognitive dysfunction — mirror those of ME/CFS and both are post-viral illnesses. We believe that learning more about Long Covid can deepen our understanding of ME/CFS, and that what we know about ME/CFS can shed light on Long Covid — and ultimately point to treatments and cures for both, as well as other long haul diseases that share their characteristics.
Below, you’ll find links to additional information, resources for patients, caregivers, and medical providers, as well as ways to get involved with our efforts to create a world free of ME/CFS, Long Covid, and other post-infection diseases.
What is ME/CFS?
What is Long Covid?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and, like Long Covid, is often triggered by an infection.
At this time, the cause of ME/CFS is not fully understood. There is no diagnostic test, cure, nor FDA-approved treatments or drugs for ME/CFS, and patients often suffer for life.
While “ME/CFS” is the preferred name by many, this disease has also formerly been known as systemic exertion intolerance disorder (SEID), chronic fatigue immunity deficiency syndrome (CFIDS), or post-viral fatigue syndrome (PVFS).
Long Covid describes a collection of lingering symptoms devastating the lives of many COVID-19 survivors.
The most frequent prolonged symptoms are persistent fatigue, brain fog, and depleted energy after even a minimal effort — having a profound impact on everyday functioning. Our models reflect that Long Covid affects an estimated 10-30% of people infected with SARS-CoV-2, including those who were asymptomatic. Researchers anticipate that many patients will have this disease for their lifetime.
Experts say the condition is a major public health concern, given the substantial impact it has on society, ranging from increased health care costs to economic and productivity losses.
We’re making breakthroughs that can improve the lives of millions who suffer from ME/CFS, Long Covid, and other post-infection “long haul” diseases. Here are some ways you can join our fight.
Join the You + ME Registry
The You + ME Registry and Biobank is a collection of patient-reported data and biological samples from people living with ME/CFS, people with Long Covid and control volunteers. A large, rich dataset gathered over time from thousands of people will drive discovery towards potential treatments and cures.
Take Action! Join Our Current Advocacy Efforts
Our online action tools make it easy to learn about the most current advocacy action items, connect with your elected officials, and share your story with your members of Congress.
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Stay up-to-date on the most recent information and expertise related to ME/CFS, Long Covid, and other post-infection “long haul” diseases, as well as programs and developments at Solve M.E.
Solve M.E. relies on the generous support of patients, family members, and friends to sustain our important work. When you support us, you stand united with thousands of like-minded people who understand the devastation of these diseases.
Connect with Our Online Community
Connect with other people with ME/CFS, Long Covid and other post-infection diseases; caregivers; healthcare providers; researchers and more with our Solve M.E. online communities.