International: March 15 is Long Covid Awareness Day - news coverage, social media posts, protests

[ahimsa]

Today, March 15, is Long Covid Awareness Day.

I thought there should be a thread for news articles, social media posts (hashtag #LongCovidAwarenessDay), etc.

I'll post a few links in replies to this thread.

If this is already covered in another thread then please move! I searched but did not find anything.

 

[ahimsa]

Dr. Lucky Tran on Mastodon posted some photos from protests in different cities:

Source = https://med-mastodon.com/@luckytran/112101714297636793

EDIT: The alt text for the four images says these photos are from London, Melbourne, Madrid, and Washington, DC.

 

[ahimsa]

Patients, advocates come to Washington for Long Covid Awareness Day

Millions of people in the U.S. and around the world are dealing with long-lasting effects from the COVID-19 pandemic.

https://www.kplctv.com/2024/03/15/patients-advocates-come-washington-long-covid-awareness-day/

 

[ahimsa]

From Psychology Today:
Long Covid Is a Disabling Disease—And It’s Not Rare

Millions of Americans are affected by Long Covid.

https://www.psychologytoday.com/us/...covid-is-a-disabling-disease-and-its-not-rare

 

[ahimsa]

Medpage Today:

Long COVID Patients, Advocates Rally for More Research, Funding, and Attention

— "This has gone on long enough," one protester says

https://www.medpagetoday.com/infectiousdisease/longcovid/109210

 

[ahimsa]

Should I include email and posts from advocacy groups on this thread?

Patient Led Research Collaborative sent out an email, for example.

 

[ahimsa]

Post from Ayanna Pressley, the U.S. representative for Massachusetts's 7th congressional district, on congressional website:
On Long COVID Awareness Day, Pressley Keeps Up Fight for COVID Long Haulers

https://pressley.house.gov/2024/03/...essley-keeps-up-fight-for-covid-long-haulers/

Pressley Has Led Efforts in Congress to Expand Access to Long COVID Treatment, Invest in Research, and More

WASHINGTON – Today, Congresswoman Ayanna Pressley (MA-07) issued the following statement marking Long COVID Awareness Day while continuing her fight in Congress to support the millions of people in America still living with COVID-19.

“Long COVID remains a national crisis in America that demands a bold, federal response that ensures no one is ignored, left out, or left behind in our recovery. On Long COVID Awareness Day, I’m proud to join national and grassroots advocates across the country to demand action from lawmakers to provide our COVID Long Haulers with the resources and treatment they need and deserve,” said Rep. Pressley. “Congress must immediately pass my TREAT Long COVID Act with Rep. Beyer and Rep. Blunt Rochester to expand access to Long COVID clinics and help Long Haulers access care right in their communities, as well as fully fund the U.S. Department of Health and Human Services’ Office of Long COVID Research and Practice, and make bold federal investments in Long COVID research. As we heal from the COVID-19 pandemic, I want our Long Haulers to know that we see them, their experiences are real, and we will never stop fighting for them.”​

 

[ahimsa]

From the website for the Today show (TV morning show):

How long COVID symptoms change patients' lives: ‘Debilitating, devastating, demoralizing’

Four years after the COVID-19 pandemic began, many long COVID patients have more questions than answers.

https://www.today.com/health/coronavirus/long-covid-symptoms-rcna141441

 

[ahimsa]

Video from Senator Bernie Sanders of Vermont:

 

[ahimsa]

ABC News (Australia):
Scientists say there's been a 'revolution' in understanding long COVID, but sufferers are still feeling left behind

https://www.abc.net.au/news/2024-03-16/long-covid-australia-response-awareness/103592326

Mentions ME/CFS:

Emerge Australia is the national patient organisation that supports those living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

It also now provides support and education to those suffering from long COVID.

"The impact of long COVID and of ME/CFS on the individual is identical," CEO Anne Wilson, who attended Friday's event, said.

"[Patients] lose their lives. They can't work. They can't function as a member of a family."

(Note: Other posts might also mention ME/CFS, I only did quick scans, I could have easily missed stuff)

 

[ahimsa]

From The Canary (UK):
‘LONG COVID DOESN’T EXIST’ scream the corporate media. Well, #LongCovidAwarenessDay proved them wrong.

https://www.thecanary.co/uk/analysis/2024/03/16/long-covid-awareness-day-uk/

 

[rvallee]

Overall, not much more coverage or impact than our own annual awareness day. Given the size and interest that LC has garnered compare to ME, this makes our own efforts impressive. I was hoping there would be more, but I can't say that I'm surprised.

 

[ahimsa]

I thought I'd post links to a few messages posted by Long Covid and ME/CFS groups. These are just the ones I found - please add others if/when you find them.

Open Medicine Foundation:

https://www.omf.ngo/longcovid-awareness-day/

Patient-Led Research Collaborative sent email:
(can't find link to online version but quote box below has the main text)

On March 15, 2024, Patient-Led Research Collaborative commemorates International Long COVID Awareness Day. On this day, we honor those with and affected by Long COVID globally. We collectively mourn those who lost their lives to Long COVID and COVID-19. Together, we raise awareness, foster community connectedness, and fight for our lives.
​

• 400+ million people estimated to have Long COVID worldwide.
• 1 in 15 adults in the US have Long COVID.
• $3.7 trillion estimated economic cost of Long COVID in the US in the first 5 years of the pandemic due to loss of quality of life, reduced earnings, and increased medical expenses.
• Less than 8% recover after 2 years.
• Each COVID-19 reinfection adds to the risk of developing Long COVID.

No FDA-approved treatments for Long COVID exist. ​

Patient-Led Research Collaborative (PLRC) continues to vigorously work towards improving the lives of people with Long COVID and infection-associated chronic conditions as the COVID-19 pandemic continues to spread worldwide.

PLRC conducts research and advocates for policies that enable patients -- particularly the most marginalized -- to survive and thrive. Our team is at the table with senior decision makers in government, healthcare, and industry worldwide as we unify the patient bloc to fight for better treatment and care. We believe putting patients in the driver’s seat hastens the discovery and dissemination of effective and efficient global healthcare solutions. ​

Highlights of Our Work​

​

• Our work behind the scenes with policymakers including WHO, US Congress, the White House, NIH, CDC, HHS, AHRQ, and FDA
• Our 2023 Long COVID review, co-authored with Drs. Eric Topol and Julia Moore Vogel, has received 1.3 million downloads and is #59 of all 25.3 million papers across all fields, and #2 of all Nature Reviews Microbiology papers
• Our call for a $1 billion moonshot for Long COVID research per year for the next decade, co-authored with Dr. Michael Peluso
• Our open letter to President Biden, signed by over 1000 researchers, clinicians, organizations, patients, and allies, calling for him to prioritize Long COVID in his FY25 budget request
• Our Patient-Led Research Fund granted $5+ million to 10 research projects, including the first monoclonal antibodies clinical trial for Long COVID and the first discovery of amyloid-containing deposits in skeletal muscle associated with post-exertional malaise (PEM)
• Our work with the US FDA and NIH on their CURE ID tool, together with key partners like #MEAction, Solve ME, and Dysautonomia International
• Our Patient-Led Research Scorecards to improve meaningful engagement of patients in research, together with the Council of Medical Specialty Societies
• Our work building and helping lead coalitions like the Long COVID Alliance and the Infection-Associated Chronic Conditions Patient Advocacy Coalition, which just released its first paper
• Our research which first characterized the 200+ Long COVID symptoms (2020), ranked among the top four most cited Long COVID research papers ever published

We have long ways to go and we can achieve more with your help.

Thank you for considering supporting PLRC and taking action with our partners’ below!

In solidarity,
Team PLRC​

Long Hauler Advocacy Project:

https://www.longhauler-advocacy.org/longcovidad24

[I thought I had more but I'm starting to fade... I'll try to come back here and add more links when I find them]

EDIT: Adding one link that I forgot earlier.

Statement from Solve M.E. :

https://solvecfs.org/march-15-is-international-long-covid-awareness-day/

 

[Amw66]

 

[ahimsa]

From The Sick Times:
Sen. Bernie Sanders introduces resolution to formalize Long Covid Awareness Day

https://thesicktimes.org/2024/03/15...lution-to-formalize-long-covid-awareness-day/

Today Senator Bernie Sanders and the Covid-19 Longhauler Advocacy Project (C19LAP) announced a resolution to formally designate March 15 as Long Covid Awareness Day.

International organizers with Long Covid selected March 15 as a date for raising awareness last year, while identifying March as Long Covid Awareness Month. This year, advocates around the world have observed Long Covid Awareness Day through a variety of events, protests, and other advocacy efforts.

“This resolution is a major step in letting the Long Covid community know that we are not being left behind, that we are seen, that Long Covid is real, and that there are people still fighting for us,” Karyn Bishof, founder and president of C19LAP, said in a press release about the resolution.

 

[ahimsa]

Post on Bluesky from Susan Kiddie (@susankiddie.bsky.social) with a photo of the CN Tower:

"Last night, the CN Tower in Toronto was lit in teal, grey and black for #LongCovidAwarenessDay"

https://bsky.app/profile/susankiddie.bsky.social/post/3kntbq36umc2r

 

[ahimsa]

The Sick Times has published a collection of photos from the protest in Washington, DC.
Photo essay: Long Covid advocates gather in DC for demonstration

https://thesicktimes.org/2024/03/18/photo-essay-long-covid-advocates-gather-in-dc-for-demonstration/

 

[ahimsa]

I did a search for Long Covid Awareness Day looking for items I missed last week. I found this news brief from ODEP, Office of Disability Employment Policy, part of the U.S. Department of Labor.

https://www.dol.gov/agencies/odep/publications/news-brief/20240314

A few bullet points from the link:

• Supporting Employees with Long COVID: A Guide for Employers
• Accommodation and Compliance: Long COVID
• Long COVID, Disability and Underserved Communities: Recommendations for Employers
• Long COVID and Disability Accommodations in the Workplace
• Understanding and Addressing the Workplace Challenges Related to Long COVID

There are more, but that should give you an idea of what's available.

 

[ahimsa]

Another item I found while searching so I'm adding it here. I've never heard of McKnights Senior Living so I don't know their reputation.

The headline mentions general support for seniors with Long Covid but there is a mention of Long Covid Awareness Day in the text.
New website supports seniors with long COVID

https://www.mcknightsseniorliving.com/home/technology/new-website-supports-seniors-with-long-covid/

A new website aims to assist people experiencing long COVID with support services, including helping them convey their symptoms and concerns with clinicians and family members.

The online tool is meant to help people with COVID overcome some of the stigma around communicating about the disease. The website can help older adults, whether they’re living at home or in a long-term care setting, have a meaningful dialogue with caregivers, which in turn could point the way toward better treatment options.

The website, long-covid-care.org.uk, was created primarily for people with long COVID who aren’t receiving any care at all, the researchers said.

The number of individuals affected by long-term COVID symptoms is severe enough that March 15 was designated in 2023 as “Long COVID Awareness Day.”