MECFS Advocates of Rochester

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MECFS Advocates of Rochester

Community, awareness, advocacy and support for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

ME/CFS Advocates of Rochester is a group of patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and their supporters engaging in education, research and outreach regarding ME/CFS through meetings, presentations, media contact, interviews, research participation, publications and support. Beginning in 1988, the JCC was home to the inaugural organization CFIDS Rochester (i.e.

Chronic Fatigue Immune Dysfunction Syndrome) where meetings attracted as many as 300 attendees. Today, ME/CFS advocates have become largely active on social media and can be found on Facebook, Twitter and Instagram.

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.

06/23/2022

Finally, the diagnosis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome will be appropriately coded and tracked in the US healthcare system. The CDC’s National Center for Health Statistics announced it will implement healthcare coding changes in the 2023 release of the ICD-10-CM on October 1, 2022. These changes were jointly proposed by these seven leading ME/CFS research and advocacy organizations: The Network, Open Medicine Foundation, Solve MECFS Initiative, International Association for CFS/ME, Massachusetts ME / CFS & FM Association, Pandora Org, Minnesota ME / CFS Alliance

ME/CFS orgs proposed changes adopted in US ICD-10-CM

05/12/2022

In honor of May 12th International ME/CFS Awareness Day we want to congratulate patient advocates from across New York State for working so diligently on recent legislation!

Led by The Network New York Chapter, advocates wrote and called their representatives in order to move important legislation announced earlier this year from committee to passage. Earlier this week, the New York State Senate and Assembly passed a bill to add ME/CFS to the public health law providing for an education and outreach program. Read the details here: https://www.nysenate.gov/legislation/bills/2021/s6928/amendment/b

05/03/2022

The hypothesis that ME/CFS is an acquired mitochondrial disorder has been around since the 1980's outbreaks in Lake Tahoe, Nevada and Upstate New York. It's so compelling that Astellas, a multinational pharmaceutical company in Japan with a branch in the U.S., has now announced that they will give $8 million into an Open Medicine Foundation-led clinical trial of a "mitochondrial stoker" in ME/CFS.

ICYMI: $8 Million Clinical Trial of a Mitochondrial Booster Underway in ! Read the new article from Health Rising by Cort Johnson: https://bit.ly/3vF6yZV

Dr. David Systrom, Co-Director of the OMF-supported Ronald G. Tompkins Harvard Collaborative, has been examining a subset of ME/CFS patients who exhibited more difficulty extracting oxygen from their blood at peak exercise.

As Cort Johnson explains, "At the very point that their muscles were screaming out for more oxygen, their mitochondria weren't taking it up.

That suggested a mitochondrial problem might be present. In general, mitochondrial disorders are thought to be genetic, but Systrom stated that he'd learned long ago that some mitochondria problems are "acquired"; i.e. that they are simply chronic diseases that show up over time.

Suspecting this was happening in some of his patients, Systrom sent 11 ME/CFS patients to get a needle muscle biopsy for tests of mitochondrial functioning, electron transport chain activity, and mitochondrial enzyme activity. Ten of the eleven patients tested positive for a mitochondrial disorder.

Astellas, a multinational pharmaceutical company in Japan with a branch in the U.S., had been keeping an eye on his work. Astellas has now announced that they will give $8 million into a clinical trial of a "mitochondrial stoker" in ME/CFS."
CONTINUE READING: https://bit.ly/3vF6yZV

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Rochester, NY

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https://about.me/MECFS.Rochester

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Our Story

In 1988, a woman named Carol with ME/CFS (then called Chronic Fatigue Immune Dysfunction Syndrome and “Yuppie Flu”) was mistakenly trying to exercise her way back to health at the JCC in Rochester, NY. This would come to be a familiar story for many sufferers with ME/CFS who would send themselves into a spiral of declining health with what is understood today as Post-Exertional Malaise (PEM) – the hallmark of ME/CFS.

While there, Carol engaged Dr. Karen Bell, who was then head of the Monroe County Health Department, to speak at an information meeting at the facility. Karen Bell was then wife of Dr. David Bell, the doctor who brought a cluster in nearby Lyndonville, NY to the attention of the CDC and rose to prominence as a ME/CFS specialist.

Carol expected 10-20 people to be in attendance, but nearly 300 showed up! On the spot that night, she announced there would be monthly informational meetings which the JCC sponsored. CFIDS Rochester was born. Carol did a lot of reading and writing in order to present the current research and to inform and educate doctors. She gave out her home phone number and was deluged with calls seven days a week. People from out of town started to call and the CDC even gave out her phone number! It was an extraordinary effort physically and financially; inconceivable to todays’ users of the internet. At that point, Carol was totally worn out and decided to write an authoritative, science-based review of the research so she could avoid repeating herself.

By the early 1990’s, a woman named Janet, whose daughter had ME/CFS, started a support group. At that group, ME/CFS patient Suzanne would meet newcomer Sandra in 1994. Sandi, having contacts in broadcasting and politics, would lay the foundation - together with Sue and Carol - for a local Rochester-based WXXI PBS documentary on ME/CFS that would subsequently be viewed across the Northeast. Empowered and interested in the research, Sue would take over the reins of a newly formed group CFIDS of Rochester Advocates. The patients were totally action-oriented and continued to meet with legislators, hold informational meetings and engage in research. We are proud to have advocated locally for ME/CFS patients and been supported by the late Congresswoman Louise Slaughter.