LONG COVID and ME/CFS Activists Plan Civil Disobedience Protest at White House on Sept. 19

The LONG COVID and ME/CFS community are planning a protest in front of the White House this Monday, Sept. 19th at 12 p.m. ET to demand that the Biden administration declare Long COVID and ME/CFS a national emergency.

#MEAction is organizing a protest of people sick and disabled from Long COVID and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) who are willing to put their bodies on the line, this Monday, Sept. 19th at 12pm ET on the White House sidewalk, 1600 Pennsylvania Ave., NW. Protesters are planning acts of civil disobedience in the tradition of AIDS activists and disability rights advocates who have gone before us to demand recognition, rights and urgent action. Thousands more will join on social media under the hashtags #MillionsMissing and #StillSickStillFighting. 

Other organizations attending include: Patient Led Research Collaborative, Network for Long COVID Justice, Solve ME, Tight Lipped and React19. Organizations supporting the protest virtually include: Covid-19 Longhauler Advocacy Project, Black COVID-19 Survivors Support Group and Body Politic

‘People living with Long COVID and ME/CFS have reached a tipping point,” said #MEAction Executive Director, Laurie Jones. “The ME/CFS community has been calling for the government to address the crisis of post-viral disease for decades. Our government turned its back on us, and now we’re seeing the devastating fallout with millions more developing ME/CFS following a COVID-19 infection.”  

Studies show that nearly half of the Long COVID community is meeting the criteria for ME/CFS. The majority of people now living with ME/CFS have developed it after contracting COVID-19, swelling our community by millions of people. We know that this crisis has no end in sight. Recovery from ME/CFS is rare, and the disease is highly debilitating

The Biden administration has begun to respond to Long COVID but not at the scale or speed to meet the incredible need. It has also failed to significantly respond to ME/CFS and the millions of people who were still sick before the COVID-19 pandemic. Long COVID and ME/CFS constitutes a national emergency. We need a full government response that is well-funded and executed with urgency.

We are Demanding: 

  • Biden Administration declares Long COVID & ME/CFS a national emergency.

  • 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. 
  • 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.
  • 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.
     
  • 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. 
  • 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. 

About #MEAction: 

#MEAction is building a global movement to fight for recognition, education, and research for ME/CFS. We have helped organize hundreds of demonstrations for ME/CFS across the world as part of our #MillionsMissing campaign

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2 thoughts on “LONG COVID and ME/CFS Activists Plan Civil Disobedience Protest at White House on Sept. 19”

  1. There are so many things that can be done for these patients. They are a high potential part of the society that are being kept away from their roles by an intentional lack of knowledge in the health systems.
    Everybody get sick, it is part of life, then we give them treatment and then they continue chasing their dreams. Why when it comes ME/CFS and now long covid (they are the same btw) , why do the patients suddenly get blamed for it? Loose their jobs without even getting a chance to see if they can recover or not.
    ….

  2. I am desperate for help and was just denied disability after waiting for a year. I am almost broke after living off of my savings for almost two years now. I need help now and people in my long COVID do too. I’ve even looked into assisted suicide b/c the pain is insane. I am too tired to advocate for myself to the level I need. I am still worthy of respect and dignity that is sorely lacking in regards of health care and social safety nets that have big gaping holes in it. Please roll back Reagan eras policy that have made disability a poverty sentenced in our country unless you have family that has money. If you come from a broken home and have no one you are screwed in this country if you get sick.

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