USA: News from #MEAction

[mango]

 

[ahimsa]

#MEAction has launched a new educational feature called Facets of ME. One specific aspect of ME will be discussed each month on the first Friday of the month.

https://www.meaction.net/2022/02/02/facets-of-me/

We are excited to launch an all-new educational feature – Facets of ME!

We will be diving into the multiple facets of ME/CFS including symptoms, comorbidities, practical tips, and more. Our goal is to take the first Friday of each month and delve into one particular facet of ME in a way that is easy to understand. It will be shared on our site and through social media. We hope to lead a great community conversation that will help all of those with ME, including those who are new to ME after COVID19, to better understand the condition.

We can share our hard-won knowledge with one another as well as the wider world to help educate about this illness. People with ME (or people who suspect they might have ME), caregivers, allies, healthcare practitioners, fellow spoonies, and the general public are all welcome to join in by responding to posts and sharing across all social media channels!

 

[ahimsa]

#MEAction's tweet for the first "Facet of ME" - PEM

https://twitter.com/MEActNet/status/1489652115786006532

 

[Sly Saint]

Facets of ME: Cognitive Dysfunction

Welcome to our second Facets of ME! This is an educational feature in which we choose one aspect of ME to dive into and explore more in-depth once a month. Our goal is to keep it understandable while still providing a great overview and links to even more detailed information.

The facet of ME that we are exploring this month is cognitive dysfunction, also known as cognitive impairment. Some might refer to it as brain fog. We see so much talk of this in our community. We also see a lot of misunderstanding of the severity and breadth of cognitive dysfunction, especially for those who have not experienced it.

https://www.meaction.net/2022/03/10/facets-of-me-cognitive-dysfunction/

 

[ahimsa]

Announcement from @MEActNet on twitter -

#MEAction and @itsbodypolitic will be hosting an Unrest Panel Discussion this Sunday, March 27th at 10am PT/ 1pm ET/ 6pm BST. We will discuss the relationship between #LongCovid & #MyalgicE from a clinical, patient, & societal perspective. #pwME

Tickets:
https://www.eventbrite.com/e/body-p...reening-panel-discussion-tickets-294296517807

Panelists: Jennifer Curtin, Ashanti Daniel, Sonak Pastakia, Tara Anne, Alyssa Landy

Moderated by Terri Wilder
​

Full tweet is included in quote below:

EDIT: I thought I should add that this is not a free event. When you go to the eventbrite.com website for tickets you see this note about ticket price/fees:

• Pay-What-You-Can Ticket (Recommendation $10)
  
  Fees will be calculated before you place your order.

 

[ahimsa]

The plan for #MillionsMissing 2022 has been announced, see #MEAction website:

https://millionsmissing.meaction.net/millionsmissing-2022/

There are two separate events planned:

On May 12th, 2022, we will come together using a global, virtual #MillionsMissing event, as well as other events on and offline to share our stories, art, and the urgency of the moment in order to build collective solidarity and a narrative for broad scale change.

Join us!

In September we will tie our common threads together by taking to the streets and campaigning from our beds to demand the systemic change needed for health equity for the #MillionsMissing.

Sign up here to get updates about our IN-PERSON DEMONSTRATION!

Twitter announcement:

 

[Trish]

#MEAction Meets With The Department Of Labor
https://www.meaction.net/2022/05/04/meaction-meets-with-dol/?mc_cid=ab6df2c750&mc_eid=83ddbd3a71

#MEAction continues our advocacy for the #MillionsMissing in a recent meeting with the Office of Disability Employment Policy (ODEP) at the U.S. Department of Labor (DOL) where we presented on community issues affecting people with ME and Long COVID and offered policy recommendations that DOL can take to address them. President Biden’s Memorandum tasks DOL to cooperate in the government-wide response to Long COVID and associated conditions that is being led by the the Department of Health and Human Services.

More at link.

 

[Sly Saint]

from email
Introducing Our New Scientific & Medical Advisory Board

Announcing members of #MEAction's Scientific and Medical Advisory Board:

Dr. Jennifer Curtin
Dr. Curtin is an Internal Medicine physician who completed her medical training at UC Irvine and has been treating patients with myalgic encephalomyelitis (ME/CFS) and commonly co-occuring conditions ever since. She has been treating Long COVID patients since March 2020. Dr. Curtin is a member of the ME/CFS Clinician Coalition and co-authored the 2021 official clinical guidance for ME/CFS.

Dr. Curtin has a personal understanding of the difficulties ME/CFS and Long COVID patients experience as she is in remission from ME/CFS, and has joint hypermobility syndrome and POTS.

Dr. Curtin co-founded healthcare startup RTHM (pronounced "rhythm") to make quality clinical care and development of better testing for Long COVID and ME more integrated and scalable urgently.

Ashanti Daniel, RN
Ashanti Daniel, BSN, RN has been an advocate with #MEAction and has shared her story in our events and in the national press, and to congress. Ashanti is a Black woman, a disabled RN, and single mother living with ME in southern California. She speaks powerfully not just to what it is to live with a chronic illness like ME, but what it is like to try to get appropriate care as a Black woman navigating the structural racism of our health care system. As a former healthcare professional and patient advocate she has been educating women of color about ME/CFS and Long COVID, and working to secure recognition and better research and care for patients.

Dr. David Kaufman
After earning a BFA from New York University School of the Arts in Filmmaking, an MA from Teachers College, Columbia University in Education, and his MD from New York Medical College, Dr. Kaufman completed his Internal Medicine Residency training at St. Vincent’s Hospital and Medical Center in New York City, and was Board Certified in Internal Medicine in 1980.

He began his Internal Medicine practice in Greenwich Village in NYC just as the epidemic that came to be known as HIV/AIDS exploded. With St. Vincent’s at the epicenter of this outbreak, he became deeply involved in the care of HIV positive patients and in the research aimed at discovering ways to treat both the opportunistic infections they were dying from and the virus that was causing the destruction of their immune systems.

As HIV/AIDS became a treatable chronic infection, his practice expanded to include more primary care/general internal medicine patients ranging from 18-105 years old. He also became involved in the diagnosis and treatment of a variety of chronic, often difficult to diagnose and manage conditions, such as Lyme disease, Fibromyalgia, Chronic Viral diseases, vitamin and nutrient deficiencies.

During the course of his 32 years in practice in NYC, he has been privileged to provide primary care to multiple family generations and to a widely diverse population of patients. He was responsible for and coordinated the full range of their care, both in the office, in the hospital, and with other consulting physicians.

In addition to his private medical practice, he was the Medical Director for one of the largest HIV Centers in New York State, the Director for HIV Clinical Research at St. Vincent’s, and, for several years, Senior Vice President for Network Development at the 7 hospitals that made up the St. Vincent’s hospital system. As an Attending physician at St. Vincent’s and a teacher of medical students and residents both at the hospital and at the medical school, he received many accolades including being honored by the entire Medical Staff. Over his many years of practice he was consistently cited in the New York Magazine listing of Best Doctors in New York, and has been recognized by the Castle Connolly listing of Top Doctors: New York Metro Area from 1998-2012.

In 2012, he moved to California and joined the Open Medicine Institute, where he was the Medical Director of the Open Medicine Clinic, managing the staff and providing the majority of clinical services to patients. In 2017, he opened a new clinic, the Center for Complex Diseases, with a focus on patients suffering from ME/CFS, Dysautonomia, Autoimmune Diseases, Mast Cell Activation Syndrome, and Chronic Infectious Diseases including Tick borne diseases, Small Intestine Bacterial Overgrowth Syndromes, and viral reactivation illnesses. He is a member of the ME/CFS Collaborative Research Center at the Stanford University Genome Technology Center and Massachusetts General Hospital/Harvard, a founding member of MasterMinds, a listserv focused on complex disease with over 300 members, an active participant in several national clinician networks that focus on ME/CFS, Mast Cell Activation Syndrome, and Autoimmune Disease, and continues to pursue clinical research related to ME/CFS and chronic complex illness.

Dr. Anne Maitland
Anne Maitland received a Bachelor of Science, in biology, from Yale University and then earned her doctorates in Medicine and Philosophy from the University of Pennsylvania. Dr. Maitland completed an Internal Medicine residency at Brigham and Women's Hospital in Boston, and then Allergy & Clinical Immunology Fellowship training at Brigham and Women's Hospital and Icahn School of Medicine at Mt Sinai in New York. She is an Assistant Professor at Mt Sinai, in the Department of Medicine- Allergy/Immunology division and delivers in-office care, in Tarrytown, and telehealth consultations, with Clinical Paradigms. Dr. Maitland is a member of Immunology faculty of the National Medical Association and serves as chair of the Mast Cell Disorders workgroups for American Academy and the Ehlers-Danlos Syndromes International Consortium. As July 1, 2021, Dr. Maitland joined Dr. Paolo Bolognese at Mt Sinai-South Nassau Community Hospital, to form a multi-discipline EDS center. Recent publications and presentations have identified immunological defects in EDS patients. Her first op-ed article, entitled ‘Medical errors happen, medical gaslighting should not’, focuses on the high incidence of medical errors, that can be prevented, if more efforts were in place to encourage patient education and empowerment - supporting the patient- centered medical home.

Her clinical focus is to upgrade efforts to meet the needs of under-served communities, plagued by immune mediated disorders, such as mast cell activation disorders, such as anaphylaxis, asthma, and food sensitivities as well as primary immunodeficiencies.

Her first op-ed article focuses on the high incidence of medical errors, that can be prevented, if more efforts were in place to encourage patient education and empowerment - supporting the patient- centered medical home. Dr. Anne Maitland has been named one of New York Times Super Doctors, since 2012, Castle Connolly Top Doctors, Westchester Magazine Top Doctors and one of America's Top 21 Women's Doctors by Lifescript.com.

Recent publications describe clinical phenotypes of pediatric and adult patients, coping with an emerging triad of clinical syndromes, an original C.I.N.: Connective tissue Syndromes, including Ehlers Danlos, Immune dysfunction, including mast cell disorders and Neuropathies.

Dr. Sonak Pastakia
Sonak Pastakia, PharmD, MPH, PhD, BCPS, FCCP serves as a Professor of Pharmacy Practice within the Purdue University Center for Health Equity and Innovation. After completing his PharmD at Temple University, he went on to complete his PGY1 and PGY2 (HIV/Infectious Diseases) residency at the University of North Carolina Hospitals, followed by a Master’s in Public Health (MPH) at Harvard University, and a Doctor of Philosophy (PhD) at the University of Warwick.

Upon completion of his MPH, he joined the Purdue University College of Pharmacy to work with the Nobel-Prize nominated Academic Model Providing Access to Healthcare (AMPATH). Within this position, he typically spends 10-11 months per year on site in Kenya. Since joining AMPATH in 2007, he has focused on implementing a wide variety of programs including helping to establish a rural diabetes and chronic disease management program which now serves over 40,000 patients and has screened over 100,000 people, a community-based care delivery program which integrates economic development with care delivery in remote, rural areas, a pharmacy distribution system which provides antiretroviral medications to over 200,000 patients living with HIV at > 500 satellite clinics throughout western Kenya, an anticoagulation monitoring and treatment program for over 4,500 patients, and a supply chain system for essential medications at over 76 sites across a catchment population of over 8 million people. He also works with the largest trade union of women in the world, the Self-Employed Women’s Association (SEWA), which has over 1.9 million low-income members across Southeast Asia. Through his work with SEWA, he is currently collaborating with SEWA’s vast community-based workforce to develop and implement a novel model of healthcare delivery for their many members.

Dr. Pastakia has also worked to advance policy in these domains through his previous completion of the prestigious Jefferson Science Fellowship with the United States Agency for International Development (USAID) Africa Bureau for Sustainable Development in Washington D.C. Since returning to the US at the beginning of the COVID-19 pandemic in late 2019, Dr. Pastakia has worked on adapting and replicating many of these comprehensive responses for underserved populations in Central Indiana. This includes helping to establish improved nutrition programs for primary school students, integrating COVID-19 vaccinations into food pantry services, holding COVID-19 education sessions for underserved communities, and implementing assessments of Social Determinants of Health needs with subsequent allocation of services for low-income patients. Dr. Pastakia has published over 100 peer reviewed articles, three book chapters, raised over $150 million in cash grants and product donations to support population health improvement efforts in Kenya, provided consultative services for several multinational pharmaceutical corporations, serves on the medical advisory board for Direct Relief, and serves as principal investigator or co-investigator on several grants for the National Institutes of Health, United Kingdom Medical Research Council, and USAID.

Dr. Mike VanElzakker
Dr. VanElzakker received a master's degree in behavioral neuroscience at the University of Colorado, working in Dr. Robert Spencer's neuroendocrinology laboratory, and a PhD in experimental clinical psychology at Tufts University, working in Dr. Lisa Shin's psychopathology neuroimaging laboratory. His postdoctoral fellowship is at Massachusetts General Hospital/ Harvard Medical School, at the Martinos Center for Biomedical Imaging, in the Division of Neurotherapeutics.

Dr. VanElzakker is interested in uncovering the mechanisms of post-traumatic stress disorder (PTSD), and of myalgic encephalomyelitis - also known as chronic fatigue syndrome (ME/CFS).

His PTSD research uses functional and structural brain imaging, behavioral attention tasks, blood, and genetic data to investigate what makes some individuals vulnerable to PTSD following trauma. He is interested in using non-invasive electroceutical medical devices to enhance safety learning, which may eventually serve as an adjunct to enhance exposure-based therapy for PTSD.

His ME/CFS research uses functional and structural brain imaging to look for abnormal patterns in brain metabolism and inflammation in this patient population. This research focuses on dysfunction at the intersection of the nervous and immune systems and posits that ME/CFS may be what happens when the nervous system detects an exaggerated and ongoing innate immune response. He is interested in using non-invasive electroceutical medical devices to enhance the anti-inflammatory vagus nerve reflex.

Dr. Braden Yellman
Brayden P Yellman, MD is a board-certified physician in internal medicine and rheumatology at BHC. He completed a BS in biology at Washington University in St. Louis, Missouri, and a Doctor of Medicine at University of Texas in Houston. He completed a residency at Exempla Saint Joseph in Denver, CO, and a fellowship in rheumatology at the University of Pennsylvania in Philadelphia. Dr. Yellman joined BHC in January 2019.

Prior to BHC, Dr. Yellman practiced at Intermountain Healthcare diagnosing and managing complex health issues and illnesses in an outpatient clinic and consulting with network providers. He developed and implemented a patient referral triage system to expeditiously identify particularly ill patients and provide them with rapid access with a focus on the underserved population suffering prolonged waiting periods. Dr. Yellman helped create curriculum to educate primary care providers in recognizing, diagnosing, and managing rheumatological diseases.

Since coming to BHC in early 2019, Dr. Yellman has meticulously evaluated complicated new patients, many of whom are in the early stages of ME/CFS or FM, and each requiring 4-6 hours of intense initial evaluation with subsequent follow-up. He has also adopted or consulted with many long-standing BHC patients. Dr. Yellman is an active collaborator on educational projects and develops and presents curriculum to educate medical providers in recognizing, diagnosing, and managing ME/CFS, FM, and comorbid conditions. He provided the intellectual content for a series of six short videos designed to rapidly teach how to recognize ME/CFS as well as how to diagnose and manage both orthostatic intolerance syndromes and post-exertional malaise.

Dr. Yellman is conversant in Spanish and has been a tireless educator, volunteer, and leader in causes for his community and profession. Dr. Yellman has also been recognized for his volunteer work with marrow donor programs. He also has received high ratings by patients for his bedside manner, communication, compassion, and humanism.


Thank you to the wonderful experts lending their insights to #MEAction so that we can further our understanding of the scientific and medical landscape. We cannot wait to begin.

 

[Wyva]

A little bit too much EDS/hypermobility/MCAS/Dr Bolognese for my taste. For the record:

 

[ahimsa]

Over the past week or so #MEAction has released several short video clips (2 - 5 minutes long) from their longer Millions Missing presentation. These are available on their YouTube channel - https://www.youtube.com/c/MEActionNet/videos. All videos have subtitles and sign language translation.

I've listed a few that I thought were worth sharing here:

1. Lisa McCorkell of Patient-Led Research Collaborative


2. Jaime Seltzer, #MEAction's Director of Scientific and Medical Outreach


3. Netia McCray, Founder & Executive Director at Mbadika, member of COVID-19 Longhaulers Advocacy Project


4. Rebecca Cokley, US Disability Rights Program Officer for the Ford Foundation

 

[Andy]

Promotion of a Perrin Technique course on social media, Perrin Technique

 

[ahimsa]

#MEAction's monthly "Facets of ME" post for June:

Facets of ME: Temperature Dysregulation

https://www.meaction.net/2022/06/23/facetsofme-temp-dysregulation/

Welcome to June’s #FacetsOfME!

Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation - heat and cold intolerance.

It is surprising how difficult this symptom can be to manage until you experience it. Jackie summarized it well: “I think people think “temperature dysregulation” is just “not liking the hot or cold” like everyone else, but it’s actually major problems cooling down in Summer and heating up in Winter. If I get too hot or cold it takes me hours to get back to a normal temperature, something healthy people can do in minutes. My functionality is extremely reduced.”

Another community member (M) shared that this was one of the worst symptoms for them. And Melissa shares, “So much thought and energy goes into managing temperature dysregulation. It is one of the most demanding, and yet least talked about symptoms of Long Covid."

 

[Trish]

New podcast series from MEAction:
Chronically Complex #MEAction podcast

If you’re new to myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), we’re here to tell you that you are not alone. There are millions of others like you. At #MEAction, our mission is to advocate for people with ME to raise awareness, educate, and fight for better access, better treatments, and ultimately a cure. Whether you’re new to this disease or you’ve been living with it for decades, there’s something here for you.

Hosts Steven Moloney and Jaime Seltzer.
EPISODE 1: MEGHAN O’ROURKE AND THE INVISIBLE KINGDOM

https://www.meaction.net/chronically-complex-meaction-podcast/?mc_cid=aa9f5760f6&mc_eid=83ddbd3a71

 

[Andy]

New #MEAction Volunteer Survey

"#MEAction is excited to announce our new Volunteer Survey! We invite everyone to complete the survey. The survey link will be available on #MEAction’s website until Friday, July 29th. We encourage everyone to thoughtfully consider each question, fill out their responses, and submit the survey by the due date. The survey consists of 12 questions and is a combination of multiple choice and fill in the blank options. If you are not able to fill out the survey at one time, you can submit your survey and come back later to finish all the questions. Learn more about this process at the bottom of this article.* The responses from the survey will inform and improve #MEAction’s volunteer program. All data captured will be confidential.

Fill Out the Survey Now!

This volunteer survey is the result of #MEAction being awarded a Ford Foundation Grant in 2021 to diversify and build capacity within our volunteer program. Since then, we have worked to have ambitious goals around creating high-quality volunteer training modules and a fully operational, accessible, and interactive volunteer recruitment, training, and deployment system. We are excited about the grant and the opportunity it provides to grow our social movement. As Long COVID and other diseases stimulate more awareness about ME/CFS, there is an increased need for volunteers from all backgrounds to join #MEAction."

https://www.meaction.net/2022/07/15/new-meaction-volunteer-survey/

 

[ahimsa]

I forgot to post about this when I first heard about it, but better late than never!

MEAction has a new podcast called Chronically Complex.

If you’re new to myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), we’re here to tell you that you are not alone. There are millions of others like you. At #MEAction, our mission is to advocate for people with ME to raise awareness, educate, and fight for better access, better treatments, and ultimately a cure. Whether you’re new to this disease or you’ve been living with it for decades, there’s something here for you.

We're your hosts, Steven Molony and Jaime Seltzer. Steven is an actor, writer, and filmmaker who makes all of #MEAction's videos and provides lots of voiceover as well. He is an ally to people with ME, Long COVID, and other chronic illnesses. Jaime is #MEAction's director of scientific and medical outreach, and she does research at Stanford University on ME and other complex chronic diseases. She is a person living with ME, and ME runs in her family with both her mother and sister affected.

We’ll be interviewing some of the most influential voices in ME/CFS and Long COVID, discussing books and articles on complex chronic disease, having candid chats about life with ME, #MillionsMissing and what it means to #StopRestPace, disability activism and advocacy, art and music from disabled artists you love, and so much more.

If you’re looking for an outlet on the road of chronic illness, you’ve come to the right place. This podcast is available on Apple Podcasts, Spotify, Audible, or wherever you prefer to listen to podcasts. If you like what you hear, please leave us a rating and a review as this will help to extend our reach. Thank you, as always, for your support!

There have been two episodes so far.

Episode 1 featured Meghan O’Rourke, author of the book The Invisible Kingdom. There's a transcript of that episode available now.

Episode 2 features Fiona Lowenstein, founder of Body Politic and author of The Long COVID Survival Guide. No transcript yet.

Episode 3 (no subject announced yet) is scheduled for release on September 1.

EDIT: Used the description from the Apple Podcasts page because it worked better than the one on the MEAction page.

 

[ahimsa]

#MEAction will hold a Virtual Town Hall on August 27 from 12:00 – 1:00 pm PDT (3:00 - 4:00 pm EDT).

This purpose of this meeting is discuss the #MillionsMissing September 2022 Protest in Washington, DC - now scheduled for Monday, September 19 at noon (new date).

Meet virtually to hear details, brainstorm, and give input on our protest in Washington, DC! We will discuss both the in-person and online components of our protest.

This town hall will only focus on the US based #MillionsMissing Protest.

The BlueJeans Events app will be used for the call. For more details go to this link:

https://www.meaction.net/event/mill...2022-protest-washington-dc-virtual-town-hall/

 

[ahimsa]

MEAction sent an email with new information for the #MillionsMissing September 2022 Protest. I've copied the full text into the quote section below.

We will be changing our Washington, D.C. protest date to Monday, September 19th at 12pm ET. We were informed by the parks department that there will be a 5,000 person protest in D.C. on September 20th and we have been given the opportunity to move our protest date to September 19th.

While changing our date is not ideal, we do believe that it is the best thing to do. Our number 1 goal is to get press and government attention and we cannot do that nearly as well amidst a sea of people protesting on a different issue.

If you have not registered yet and plan to attend, please do so now! Please also ask your family, friends, and healthy allies to join you! Those who have registered should have just received an email outlining options for those who have already booked non-refundable travel. We do not want to inconvenience you. We want to support you.

Y’all, we’ve learned to be very adaptable and this protest is no exception. Thank you for your understanding in advance and know we would not change this date if we did not strongly believe doing so gives our community a much better chance to have a big impact.

We are very committed to making #MillionsMissing 2022 a success and to getting the attention we deserve so we can get the outcomes we deserve.

Our travel scholarships will open on Monday, August 22nd! So keep a lookout! And our t-shirts are on sale now. Order by August 23rd to be included in the first batch, and get your t-shirts by September 13th.

In solidarity,
Laurie and all of us at #MEAction

PS: Be sure to register for these upcoming events!

Here's a link to the #MEAction website with more information:

https://millionsmissing.meaction.net/protest2022/

 

[ahimsa]

#MEAction has posted the latest article in their "Facets of ME" series - Travel Tips

Welcome to August’s Facets of ME! If you are unfamiliar, #FacetsOfME is a new #MEAction feature this year where we take time to explore one facet or aspect of myalgic encephalomyelitis (ME/CFS). Sometimes it is a symptom and sometimes it is a unique aspect many of us face living with ME. So far we have explored post-exertional malaise (PEM), cognitive dysfunction, temperature dysregulation, and loneliness. Next we are going to dive into traveling with ME.

When you add living with a complex chronic disease like ME to the challenges of travel, it can result in anywhere from a taxing to extremely difficult experience—if it is even possible at all. We know that many cannot travel and we mourn that loss with you and hope you might be able to again one day. Others only travel for medical appointments and it takes a lot of prep and recovery time. Some of us can visit family and friends occasionally or go on vacation. Some of you might be headed to a protest soon. We want to help make those experiences easier for you. We have gathered tips from our amazing community, scoured the internet for the most helpful advice and links, and hopefully packaged it in an easy-to-cognitively-digest way.

Full article here - https://www.meaction.net/2022/08/26/facets-of-me-travel-tips/

 

[ahimsa]

Merged thread

Why I'm Getting Arrested on Monday at the White House, and How You Can Help (Millions Missing protest in Washington, DC)

https://thecrankyqueer.substack.com/p/why-im-getting-arrested-on-monday

Join the first national civil disobedience protest for Long COVID and ME/CFS, or take action at home to support!

On Monday, I will be arrested at the White House for the first time since the 2010 protest during the International AIDS Conference.

I will do so as a disabled and chronically-ill person living with Long Covid and ME/CFS (myalgic encephalomyelitis, which affects about 50% of people with Long COVID — I’ve probably had it for decades but was diagnosed in 2017).

We are protesting at the White House to demand that the pandemic of Long COVID and other infection-associated complex chronic disease be addressed with the urgency this public health emergency requires.

The protest, organized by #MEAction, will be taking place on Monday 9/19 from 12-1/1:30pm on Penn Ave in front of the White House.

Most of the organizers and participants in this protest are ourselves Still Sick, Still Fighting, and depending on the solidarity of healthy or manageably chronically ill allies.

 

[Braganca]

This is exciting. I’m grateful to any ME activist who will endure arrest for our cause. Excited to see MillionsMissing progress to civil disobedience. I know that activists like Terri Wilder has wanted to go this way from the beginning in 2016, and that Jen Brea took a lot of inspiration from Act Up, and guidance from its leaders. Here’s hoping for a successful protest and good turnout and press coverage for Monday!