MECFS Advocates of Rochester

05/29/2026

May is ME/CFS Awareness Month

As the month comes to a close, we'd like to thank the national non-profits committed to advancing education and understanding of this devastating disease. As patients, we often cannot make it out of bed to an awareness event. But these organizations knock themselves out for us to help drive meaningful change!

These are just SOME of the highlights from the month. Please visit these organizations individually for more information.

The Bateman Horne Center compiled and shared stories of ME/CFS patients: https://www.instagram.com/stories/highlights/18097943501275557/

Solve MECFS Initiative's CEO Emily Taylor talked about how her lived-experience as a caregiver shapes the organizations advocacy and research: https://ow.ly/rtFg50YZQKp

Ron Davis, PhD, Chair – Scientific Advisory Board at Open Medicine Foundation, and Director – ME/CFS Collaborative Research Center at Stanford University, shared his perspective on research: https://www.youtube.com/watch?v=FPhECAf7gz0

The Network spent the week of May 12th in Washington D.C. holding meetings on Capitol Hill. This included a live event at the Department of Health and Human Services with Dr. Stephanie Haridopolis, newly named Interim Surgeon General, speaking with advocates: https://www.facebook.com/reel/1467455647927627

04/11/2026

Caregivers experience loss too. If you are a caregiver for someone with ME/CFS or related conditions, join Caregiver Wisdom Sunday, April 12th at 3pm EST.

With many years of lived experience, Kim Moy brings together community, coaching, and content to support fellow caregivers of loved ones with debilitating chronic illnesses like ME/CFS, Long COVID, POTS, fibromyalgia, chronic Lyme, and other conditions.

There’s a kind of grief many caregivers carry… but rarely have space to talk about.

It’s the grief of witnessing your loved one’s suffering.
The loss of the person they once were.
The relationship you once had.
The life you thought you’d be living.

This is called ambiguous loss—and it can feel confusing, heavy, and isolating.

❤️ You don’t have to carry it alone.

This Sunday, I’m hosting a special free workshop:
🌿 Walking the Ambiguous Loss Path as a Caregiver
🗓 Sunday, April 12
⏰ 12–1 p.m. PST / 3-4 p.m. EST

We’ll explore:
• What ambiguous loss is (and why it’s so hard to name)
• The many layers of grief caregivers experience
• Multifaceted steps toward healing
• A space to connect with others who truly understand

This will be a heartfelt conversation—please come as you are. (And you may want tissues. 💙)

👉 Register here: https://bit.ly/4cwatPa

If this resonates, I’d love to have you with us.



The Network Bateman Horne Center Solve MECFS Initiative Open Medicine Foundation Massachusetts ME / CFS & FM Association The Sick Times Long Covid Families Long Covid Kids COVID-19 Longhauler Advocacy Project Patient-Led Research Collaborative World ME Alliance EDS Canada Foundation Emerge Australia Inc RTHM

03/26/2026

You can make a difference, right now!

ME/CFS is not consistently recognized, diagnosed, or safely managed across healthcare settings. People receive contraindicated recommendations. Diagnoses are delayed by years. That is a patient safety concern, and it happens because ME/CFS is not part of standard medical training.

We're asking State Medical Boards to meet with our community and recommend ME/CFS questions for national licensing exams, so that ME/CFS competency becomes expected knowledge for every clinician.

Take 2 minutes to support this request and sign at the link!

Community sign-on letter to State Medical Boards: tinyurl.com/StateMedicalBoardForm

11/08/2025

This time last year, local advocates with ME/CFS resulting from Long COVID worked with the Bateman Horne Center to host a Grand Rounds at UR Medicine. This session focused on the management of mild to severe functional impairment of infection-associated chronic conditions. The URMC grand rounds were a big success; over 300 medical providers attended in-person and online, and a faculty dinner allowed for longer conversations.

If you missed the Grand Rounds, or need to revisit the presentation, you may view it here: https://shorturl.at/OuN54

05/12/2025

Today, May 12th is International ME/CFS Awareness Day. It is not a cause for celebration but a day to send out an SOS across the globe for better awareness, funding and care of the from , post COVID ME/CFS and related post infectious disease conditions. Please listen to Jaime Seltzer, scientific director at The Network, to learn about the important work to be done. Read more and participate in today's day of action at https://www.meactions.org/millionsmissing25 and donate if you can at https://www.meactions.org/millionsmissing-2025-sos-fundraiser .

11/11/2024

Local advocates with ME/CFS resulting from Long COVID worked with the Bateman Horne Center to host an upcoming Grand Rounds at UR Medicine. This session scheduled for Tuesday and Wednesday, November 12th and 13th, focuses on the management of mild to severe functional impairment of infection-associated chronic conditions.

'When will we actually get help?' That is the question for millions of long COVID patients with debilitating symptoms that persist or emerge after an acute COVID infection.

10/04/2024

We are grateful for the leadership in ME/CFS medical education provided by the Bateman Horne Center. Check out their recent video "Life with a Low Battery: Living with ME/CFS" aimed at a non-medical approach to understanding of ME/CFS here: https://youtu.be/00f6Yx9ab3I?si=k5VVjLbG4lTUn68F

This reminds us of an interactive game created by UK-based ME Foggy Dog "Foggy Bones" where you can try your hand at managing ME/CFS symptoms here: https://www.mefoggydog.org/about-me/energy-management/

"My journey into ME/CFS education began with my sister's experience with the illness. Looking back, I wish we had understood the importance of not pushing beyond limits and of 'closing down apps' whenever possible."

BHC Deputy Director and Education Director, Tahlia Ruschioni shares the story behind our recently released video "Life with a Low Battery: Living with ME/CFS"

👉 https://qr-codes.io/Jn3Yfb

Open Medicine Foundation

08/22/2024

A study led by Albany Medical Center finds biomarkers shared among Long COVID patients. Jamie Seltzer, scientific director at The Network, points out that similar biomarkers have been found in ME/CFS patients.

Scientists at Albany Medical Center have found biomarkers in the blood that could be unique to long COVID patients.

03/24/2024

This past November, the first Upstate NY Long COVID Recovery Center opened in the Buffalo-area at UBuffalo Long COVID Registry / UBMD Long COVID Recovery Center and the most common symptoms presenting are -like. “We know that there's basically five types of long COVID," said Abeles. "The most common ones we're seeing are the neurologic with the brain fog, the dizziness, the fatigue.”

The center serves everyone.

11/26/2022

Do you live in the Finger Lakes region? Before the end of November, complete the Common Ground Health's survey to help study health disparities between geography, race, ethnicity, primary language, and gender across the region.

A survey to study health equity across the Finger Lakes region, especially in underserved communities, is open until the end of November.