We open Long COVID Awareness Week with a big-picture look at where research and care stand today. Dr. David Putrino from The Cohen Center for Recovery from Complex Chronic Illness at Mt. Sinai will walk us through what we’ve learned so far, where meaningful progress has been made, and where gaps still remain.
Today is about taking stock without judgment. Take a moment to notice where you are right now. You do not need to feel optimistic or discouraged. Simply noticing is enough. Understanding of Long COVID has grown, and many now have better language for what they are experiencing.
You might reflect on:
What feels clearer to me now than it did earlier on?
What have I learned about my body or my limits that helps me day to day
What information or validation helps me feel more grounded right now?
Share a Social Media Post
Use hashtags on your post to boost visibility
#LongCOVIDAwareness #LongCOVID #StopLongCOVID
Post one fact about Long COVID each day leading up to the awareness day
Share 3 things about Long COVID that people might not understand
“Invisible, but Here” Photo Challenge – Take a photo of an empty chair, an unmade bed or a quiet moment to symbolize the unseen struggle
Send a text or email to a friend or family member about Long COVID
Learn more about Long COVID from videos and webinars featuring leading researchers and experts.
Tuesday focuses on rehabilitation approaches for brain fog and fatigue, with a practical look at how physical therapy and occupational therapy can support daily function and energy management. Sessions will explore pacing cognitive strategies and realistic rehab tools that meet people where they are with options to adapt based on symptoms and capacity.
Today focuses on supporting daily life rather than pushing for improvement. Take a few quiet breaths and notice how your body and mind feel today. There is no expectation to do more than you can. Rehabilitation is about making life more manageable.
You might reflect on:
What feels doable today and what feels harder?
What small adjustments help me get through the day with less strain?
How can I support my energy rather than spend it?
Write a letter to your representative urging support for Long COVID legislation or research funding opportunities.
Submit public comment to a health agency advocating for patient-centered Long COVID care and research priorities.
Sign and share a digital petition calling for better Long COVID disability support, research funding, and improved clinical care pathways.
Share information about pending legislation with your friends and family
Long COVID can impact more than your health. It can affect employment, income, and stability. These resources highlight Massachusetts resources for financial support, disability programs, and community services to help you find practical help when you need it.
We are now understanding that Long COVID is not a single condition, but rather, a constellation of overlapping conditions that can vary person to person. Dr. David Systrom from Brigham and Women's Hospital will discuss what we understand about the complex pathophysiology of Long COVID and how multiple mechanism contribute to symptoms.
Today is about understanding symptoms in context. Take a moment to notice what your body is communicating right now. Symptoms are part of how your system responds and adapts.
As you reflect, you might ask yourself:
What patterns have I started to notice in my symptoms?
What early signals help me recognize when I need to slow down or adjust?
What responses help me feel more in control when symptoms show up?
Imagine the Future You Want – What do you hope has changed in Long COVID care, research, and awareness?
Reflect on Your Current Experience – How has Long COVID impacted your life, and what challenges or progress have you seen?
Set Personal and Collective Intentions – What role do you hope you and the Long COVID community have played in shaping change?
Offer Encouragement and Hope – What message of support would you like to read in the future?
We have built a Resource Library for trusted research, clinical resources, patient-facing explanations, and practical tools. Learn more about what may be causing your symptoms and find related research. Patient facing handouts help you manage your symptoms and explore which treatments to discuss with your healthcare providers.
We invite you to join us as we highlight Long COVID research at both the national and local level. Researchers will share what they are studying how clinical trials work and what this research means for people living with Long COVID including updates on subtypes and repurposed medications.
Today focuses on the work that is actively happening. Long COVID research is expanding, with more coordination, clearer questions, and growing attention at both national and local levels.
Take a moment to reflect on how research connects to your life.
What questions about Long COVID matter most to me right now?
What kinds of answers or treatments would make the biggest difference in daily life?
How does knowing that this work is underway help me feel more grounded or supported?
Share a Long COVID study, clinical trial, or research program to show that scientific work is ongoing.
Subscribe to a Long COVID research newsletter and share key updates with your network.
Encourage eligible people to consider participating in research or clinical trials when appropriate.
Contact your local or national representatives to advocate for continued funding for Long COVID research.
Share why research matters to you personally and what kinds of answers or treatment
Are you interested in participating in research? We’ve pulled actively recruiting Long COVID studies and clinical trials in New England from trusted registries and academic medical centers. Each link takes you to the study’s official page so you can confirm eligibility and reach out to the team directly.
This day focuses on practical self advocacy in healthcare including how to talk with your primary care provider and navigate medical visits with Long COVID. Programming will include guidance from clinicians and patient perspectives along with concrete tools and scripts to help you communicate your needs advocate for yourself and continue the conversation beyond the week.
Today centers on communicating your needs in ways that feel realistic. Advocacy does not have to be exhausting or confrontational. Even small moments of clarity can make a difference.
You might reflect on:
What helps me feel more prepared for medical visits?
What do I most want my providers to understand about my daily life?
What would make my next appointment feel slightly easier?
Share practical tips for talking with healthcare providers about Long COVID symptoms and daily impact.
Post or send a short script or checklist that helps patients prepare for medical visits.
Write a summary of your Long COVID medical symptoms to include in your medical record
Share information about disability accommodations, workplace protections, or patient rights related to chronic illness.
Offer guidance or support to someone newly navigating Long COVID care.
Advocacy can look different for everyone, especially when you are managing limited energy. These guides offer practical, low-effort ways to get involved at your own pace. Even small actions matter, and your voice has impact.
Join us from 10:00am–12:00pm at Christian Herter Park for fresh air and friendship. The park is located along the Charles River and our meeting spot will be adjacent to the parking lot.
Family, friends, and pets are welcome.
This gathering is intended as a low pressure opportunity for connection. We are mindful of concerns around in person events. While we cannot eliminate all risk, meeting outdoors helps reduce it and masks are encouraged.
If the weather does not cooperate, we will move to a virtual only gathering and post updates on our website.
Grab your coffee and drop in for a virtual get together between 10:00am–12:00pm. This is a warm, unhurried space to meet others, connect casually, and spend time with people who get it. Come for a few minutes or stay the whole time, whatever feels right.
Cameras and microphones are optional and there is no pressure to participate.
Sunday March 15 is Long COVID Awareness Day, a patient led day of recognition created by the Long COVID community. It is a time to pause, reflect, and acknowledge the profound impact COVID continues to have on millions of lives around the world.
We invite you to join a global moment of silence at 3:15pm to honor those we have lost, to hold space for people living with Long COVID, and to recognize the caregivers, families, and communities who carry this with them every day.
This moment is about remembrance, visibility, and solidarity, and about affirming the ongoing need for care, research, and accountability.