Long Covid Alliance: Long Covid and ME Advocacy Groups Join Forces!

[Pyrrhus]

Long Covid and ME Advocacy Groups Join Forces!

About Covid-19 Longhauler Advocacy Project:

The Covid-19 Longhauler Advocacy Project was created by a Longhauler, for Longhaulers, and their support systems. Our focus is on support, education and advocacy. Longhaulers are still struggling with being heard, believed and helped. We will continue to be pushed to the side as long as we continue to see the mass influx of new Covid-19 cases daily. The general public, and even the medical world, are not well informed about the loss of quality of life we suffer, how debilitating it is, and how it is affecting our everyday lives. Things like taking a shower or walking hthe dog, the inability to or difficulty working, financial and relationship strains, not being able to be present for our kids like we want to be..... While Covid-19 did not kill us, it still took away our lives and this needs to be highlighted and addressed.

Studies conducted by Covid-19 Longhauler Advocacy Project
● The largest confirmed case only, longhauler survey-1,700 responses: Symptoms https://drive.google.com/file/d/1ExwUjaNCBaXmBjaR7Ent_maeKV6YYRRO/view
● Confirmed and Unconfirmed Longhauler Survey-700 responses: those unable to get tested, contact tracing, exposure, incubation time, symptoms, diagnosis, etc. https://drive.google.com/file/d/1kb_0NDEr7FmWokQ4cmq0MEHD1usoMT-L/view
● Experiences and Needs of Longhaulers Survey- 1,200 responses: Health, Healthcare, Employment, Social life, Relationships, Finances, the future, Government, etc. https://docs.google.com/document/d/1uKX3dCdUgeVjlwaOAJiIGa8HKK08c1lSU9vBQeVY0yc/edit

About Solve ME:

Founded in 1987 and incorporated in North Carolina in 1990 as The Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, the Solve ME/CFS Initiative (Solve M.E.) relocated to Los Angeles, CA and officially changed our name in 2014. Solve M.E. is a non-profit disease organization that works to accelerate the discovery of safe and effective treatments, strives for an aggressive expansion of funding for research that will lead to a cure and seeks to engage the entire ME/CFS community in research, advocacy, and patient support. Solve M.E. is the foundational ME/CFS organization, steadily broadening strategic, collaborative relationships with patients, researchers, government officials and other ME organizations across the globe.

Watch the event here!
https://www.facebook.com/watch/live/?v=227685635404918&ref=watch_permalink


For more discussions on Long Covid, see:
https://forums.phoenixrising.me/threads/long-covid-summary-of-discussions.81357/

 

[Pyrrhus]

The first 5 minutes are mostly just introductions.

Here is an excerpt from the discussion:

Hunter Howard CEO of Global Pandemic Coalition:
24 days after infection, I still tested positive, which confused the doctors...
It's been 9 months and still I feel exhaustion ... headaches, brain fog, GI issues...
We needed to do something. If not us, who?
By aggregating the data, we can understand this better...
It's going to take a lot of data, a lot of research, and organizations like [Solve ME] to help us understand this...

Oved Amitay CEO of Solve ME:
We're focusing on creating a large dataset which we call the "You + ME" registry...
For now, we've opened another portal for this registry to begin to collect the experience of the longhaulers...
( https://youandmecovid.com/ )
What are the ways that we could work together to be able to collect the kind of information that we will need in order to translate it to treatment?

Hunter Howard CEO of Global Pandemic Coalition:
The good news is that there are passionate people who are so interested in helping out. There are so many people who have survived... they're frustrated... they're misunderstood...
But then how do we connect them with groups like this? We need a global army who are passionate about solving this.

Emily Taylor Director of Advocacy of Solve ME:
Karyn Bishof is a firefighter and a paramedic who is unable to work due to the lingering effects of Covid-19. What could you share about your experience with the pandemic, both as a front-line first responder and then also as a patient who then got Covid-19?

Karyn Bishof of Covid-19 Longhauler Advocacy Project:
I got Covid-19 very early on, in March. At the time, we had only heard about the cases in Seattle, so we weren't aware that people here in south Florida had it...
I was only able to get tested at a "First Responders Only" testing site...
I had a mild-to-moderate case...
Being a first-responder, I felt like I needed to manage it at home...
I'm now 9 months post-diagnosis... I've been diagnosed with... a ton of things that I didn't have before...
Now I am unable to work. I feel like I'm sidelined...
There are not as many longhaulers out there who are able to speak in medical terms to their doctors...
I feel like I am in a unique position, both as a patient, and as somebody with a medical background...

Emily Taylor Director of Advocacy of Solve ME:
Thank you so much both for being a first responder and for sharing your thoughts about why you turned to advocacy. These resonated so strongly with me...
What led you to create the Covid-19 Longhauler Advocacy Project?

Karyn Bishof of Covid-19 Longhauler Advocacy Project:
Around June, I had still never heard of longhaulers. I went to Google and I typed in "COVID issues for months". I found an article that talked about longhaulers and online groups. I joined two of those groups and I was blown away by the amount of people who were just like me...
That led us to create some of the surveys, we've done three...
The first one, we had 1700 respondents... I thought that was really groundbreaking to have a patient-led survey...
This has turned into a much bigger movement for patient advocacy...
The group is really focused on advocating for patients in multiple ways...
We're fighting for the recognition in Congress for funding and research to go into Covid...
One in three longhaulers are developing dysautonomia...
Almost every longhauler will tell you that they suffer from chronic fatigue...
We have to use this opportunity to not only fight for longhaulers, but to also fight for these other communities, because we're now part of these other communities...
We all need to come together and fight for the common goal...
Anybody is welcome in the group, even if you're none-of-the-above, but if you're willing to help us advocate, please join us, because we need all the help that we can get...
We all need to come together and fight for the common goal of research and funding...
( https://www.facebook.com/groups/Covid19LonghaulerAdvocacyProject/ )

 

[Pyrrhus]

More about the Covid-19 Longhauler Advocacy Project:

The Covid-19 Longhauler Advocacy Project was created by a Longhauler, for Longhaulers, and their support systems. Our focus is on support, education and advocacy. Longhaulers are still struggling with being heard, believed and helped. We will continue to be pushed to the side as long as we continue to see the mass influx of new Covid-19 cases daily. The general public, and even the medical world, are not well informed about the loss of quality of life we suffer, how debilitating it is, and how it is affecting our everyday lives. Things like taking a shower or walking the dog, the inability to or difficulty working, financial and relationship strains, not being able to be present for our kids like we want to be..... While Covid-19 did not kill us, it still took away our lives and this needs to be highlighted and addressed.

During the months of June and July, this group and its members did an enormous media push to get our stories and the term Longhauler out there. Prior to that, no one knew about a sequela from Covid-19. It was us speaking up that bought light to this. We continue to do media stories weekly on a variety of topics that arise. We are working on medical coding and billing, the need for comprehensive post covid care centers with congress, the senate and hospital systems in each state, collaboration with other chronic illness communities, a physician and patient care guide, webinars with other groups such as Pulmonary Wellness Foundation, Solve ME/CFS, Dysautonomia International (In the works) and Kantor Neurology.

As Karyn Bishof said in the webinar:
"Anybody is welcome in the group, even if you're none-of-the-above, but if you're willing to help us advocate, please join us, because we need all the help that we can get..."
https://www.facebook.com/groups/Covid19LonghaulerAdvocacyProject/

 

[Pyrrhus]

Studies conducted by Covid-19 Longhauler Advocacy Project

● The largest confirmed case only, longhauler survey-1,700 responses: Symptoms https://drive.google.com/file/d/1ExwUjaNCBaXmBjaR7Ent_maeKV6YYRRO/view

● Confirmed and Unconfirmed Longhauler Survey-700 responses: those unable to get tested, contact tracing, exposure, incubation time, symptoms, diagnosis, etc. https://drive.google.com/file/d/1kb_0NDEr7FmWokQ4cmq0MEHD1usoMT-L/view

● Experiences and Needs of Longhaulers Survey- 1,200 responses: Health, Healthcare, Employment, Social life, Relationships, Finances, the future, Government, etc. https://docs.google.com/document/d/1uKX3dCdUgeVjlwaOAJiIGa8HKK08c1lSU9vBQeVY0yc/edit

A new document has just been released from the Covid-19 Longhauler Advocacy Project!

Post-Covid Syndrome Patient Care Guide for Physicians and Self-Advocacy
https://docs.google.com/document/d/...A_10znCecCTlWIoqyj84CbmbAWyjv-iBcz-W_4Nu69pc0

 

[Pyrrhus]

Karyn Bishof, the founder of the Covid-19 Longhauler Advocacy project, was interviewed on the TV show "Dr. Phil":

Single Mom And COVID Long Hauler Says She Has ‘A Lot Of Mom Guilt’

Karyn, a single mom to an 11-year-old son, says she contracted COVID-19 in March 2020, and eight months later, she’s still not feeling well. She says getting sick took away a job she worked hard for – working as a firefighter and EMT -- and she’s frustrated.

“Not having income for seven months now has been really hard, and on unemployment, I was getting $124 a week,” Karyn says. “I have a lot of mom guilt because my son is taking on a lot of responsibility. I can’t even do basic tasks like finish the laundry, sweeping, mopping.”

https://www.drphil.com/videos/single-mom-and-covid-long-hauler-says-she-has-a-lot-of-mom-guilt/


As usual, Dr. Phil did most of the talking.

 

[Pyrrhus]

...Well, I already knew that the term "Long Covid" probably included multiple conditions, but I did not appreciate the very different types of symptoms and recovery trajectories in the Long Covid community until I joined Karyn Bishof's Covid-19 Longhauler Advocacy Project and read people's stories for myself!

 

[gbells]

If chronic covid-19 is part of ME then the funding problem will be over. This is encouraging.

 

[Pyrrhus]

These initial alliances resulted in the worldwide Long Covid Alliance:

Wow.

LONG COVID ADVOCATES JOIN TOGETHER TO FORM ALLIANCE TO MAKE POLICY RECOMMENDATIONS, SECURE RESEARCH FUNDING, AND TRANSFORM UNDERSTANDING OF POST-VIRAL ILLNESSES
https://solvecfs.org/wp-content/upl...ance-Launch-Press-Release-2-25-2021_FINAL.pdf

Excerpt:

LOS ANGELES, Calif. (February 25, 2021) – Today, leaders of 50 organizations and patient groups announced the formation of the Long COVID Alliance. The Alliance includes a network of patient-advocates, scientists, public health and disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policymakers and accelerate research that will address the challenges faced by ‘COVID long haulers’ and related post-viral illnesses.

Their goal is to transform the current understanding of Long COVID and related post-infectious illnesses such as: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD) and mast cell activation syndrome (MCAS), autoimmune diseases and other related illnesses.

The alliance includes Solve ME, MEAction, the Covid-19 Longhauler Advocacy Project, and Body Politic, among many others. We've never seen such an alliance between ME/cfs groups and Long Covid groups before.

Here's the new website for the alliance:
https://longcovidalliance.org/

Related discussion:

UK: The ME Association has joined the Long Covid Alliance
https://forums.phoenixrising.me/thr...ion-has-joined-the-long-covid-alliance.83187/

 

[Pyrrhus]

Solve ME: ANNOUNCING THE SOLVE LONG COVID INITIATIVE
https://solvecfs.org/announcing-the-solve-long-covid-initiative/
DECEMBER 27, 2021

Excerpt:

As I’ve previously shared, the ME/CFS community has much wisdom and experience to offer those suffering from Long Covid, particularly the large number who have or will be diagnosed with ME/CFS. Our work in the post-infection disease space has allowed us to create and support research and advocacy programs that will improve outcomes for the millions suffering from poorly understood, chronic diseases.

That’s why we’re launching our Solve Long Covid Initiative to utilize over 30 years of our research and advocacy experience advancing the understanding of post-infection diseases. This initiative will allow us to continue to expand capacity and investment in programs such as the You + ME Registry, our federal advocacy, the Ramsay Research Grant Program, and more — strengthening our response to this emerging crisis while ensuring that progress made will benefit everyone with a “long haul” disease.
[...]
As part of our efforts with the Solve Long Covid Initiative, we’re also partnering with the Global Interdependence Center on a year-long webinar and conference series exploring the pandemic’s long-term healthcare, policy, and economic impact. We’ll bring together world-class immunologists, medical experts, policymakers, and economists to explore critical insights into defining, diagnosing, optimizing treatments, and healthcare policies for Long Covid and post-infection diseases based on analyses of their impact on the U.S. and global labor markets.

We hope you’ll join us for the first webinar on January 6, 2022, which will include a presentation and Q & A session with myself, Emily Taylor (Solve M.E. Vice President of Advocacy and Community Relations), ME/CFS and Long Covid researcher Amy Proal, Ph.D., and others.