OUR DEMANDS
#Millionsmissing
Millions of people are still sick and still fighting.
People are out of work. People have lost their jobs.
People have lost their health and their lives.
This is a national emergency.
Dear President Biden,
We need you to declare Long COVID and ME/CFS a national emergency.
Millions of people who got COVID-19 are not getting better. People are still sick and still fighting. As many as 12 million people with Long COVID are going on to develop the complex, chronic and devastating disease of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). ME/CFS is a key piece of the puzzle and must be a major part of our Long COVID emergency response.
Nearly half of the Long COVID community is meeting the criteria for ME/CFS. The majority of people with ME/CFS are now people with Long COVID. This should come as no surprise because viruses triggering long term illness have been occurring throughout history. Many viruses have long-term and chronic effects, such as SARS, West Nile Virus, Epstein Barr Virus, Polio, and many more.
Long COVID was a preventable tragedy. We wouldn’t be in this crisis if our government had listened to people with ME/CFS. For decades people with ME/CFS have been calling for our government to respond to the onslaught of infection-associated chronic diseases in the United States. If the government had listened to our communities, our society would have been far more prepared for Long COVID. If the CDC had listened to our call for medical education, our medical providers would be far better equipped to diagnose and treat the diseases affecting people with Long COVID. If the NIH had invested in infection-associated chronic disease research, we would be much further along in our understanding of this disease state and our ability to provide treatment options.
There is much to do in terms of supporting, caring, and treating people with ME/CFS and other diseases associated with Long COVID. There are treatment options that people need access to immediately. We must educate medical providers on how to diagnose and treat ME/CFS. We need robust resources to rapidly advance research and treatment for ME/CFS.
The Biden administration has begun to respond to Long COVID but it is not nearly urgent enough and not nearly fast enough. It also fails to significantly respond to ME/CFS and the millions of people who were still sick before the COVID-19 pandemic.
Please intervene. Declare this the national emergency that it is.
See our demands, below.
Sincerely,
All of us at #MEAction
we are demanding:
#Millionsmissing
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Biden Administration must declare Long COVID & ME/CFS a national emergency
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A nationwide public health education campaign on ME/CFS, including how to diagnose, prevent and manage it. Educating the nation about post exertional malaise (PEM) and the importance of STOP REST PACE should be a central PSA within this campaign.
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Immediate education of healthcare providers on how to diagnose, and treat ME/CFS, and the associated infection-associated chronic diseases of dysautonomia, and mast cell activation syndrome (MCAS). The majority of clinicians have not been adequately taught or equipped to diagnose or treat these post-viral conditions, and some continue to prescribe outdated and harmful treatments like graded exercise which is harmful to people with post-exertional malaise.
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Economic support of people with ME/CFS and Long COVID including but not limited to: case management and care coordination; economic support; ending the rejection cycle for social security benefits; providing emergency, ongoing housing resources and financial assistance; early intervention services and comprehensive healthcare for people with ME/CFS and Long COVID.
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Robust resources to rapidly advance research and treatment for ME/CFS. Research funding is extremely low given the number of people affected and the debilitating nature of the disease. There are currently no FDA approved treatments for ME/CFS.
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ME/CFS knowledge and expertise at the forefront of our government’s response. People with ME/CFS, clinicians and researchers in the field have decades of experience living, treating and researching this disease. We should be leading the efforts to study, treat, and educate on Long COVID in order to most quickly and effectively bring treatment relief to millions.