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.
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
"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"
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
04/10/2022
In a recent article in the Montreal Gazette, Jesse Feith writes "It’s estimated anywhere between 10 to as high as 50 per cent of all people who contract COVID-19 could develop long COVID. Of those, research suggests up to half could meet the diagnostic criteria for ME/CFS." Also featured is Alain Moreau, PhD, Director of the Open Medicine Foundation established ME/CFS Collaborative Research Center at University of Montreal who says, "We want to find solutions to stop the progression of the disease, because we have this window of opportunity to work at the beginning of an infection, or post-infection, and turn the trajectories around.”
As experts probe the connection to an often-overlooked chronic illness called ME/CFS, patients new and old urge people to recognize how life-altering it can be.
02/18/2022
In a recent article in The New York Times regarding exercise intolerance in Long Covid patients, Melinda Wenner Moyer writes “Some doctors also point to parallels between patients with long Covid and those with chronic fatigue syndrome, who have severe fatigue, memory and cognitive problems, and often muscle or joint pain. For decades, physicians advised chronic fatigue patients that exercise would improve their symptoms, but for many patients, exercise actually made their symptoms worse and now is no longer recommended.”
And experts have some theories as to why.
01/26/2022
ATTENTION Health Care Professionals! Medscape has added a new continuing medical education (CME) course on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS): "A Fresh Look at Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Diagnosis and Management of a Multisystem Illness."
Medscape has added a new continuing medical education (CME) course on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): "A Fresh Look at Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Diagnosis and Management of a Multisystem Illness."
*Please note, access requires a Medscape account. Create a free account at medscape.org.
This course is intended to educate primary care physicians, nurses, and other healthcare providers (HCPs) on the symptoms, diagnosis, and management of ME/CFS.
As the leading source of continuing medical education, clinical news, and health information, Medscape medical education is an excellent opportunity to raise largescale awareness of ME/CFS within the medical community.
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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.
In 2018, 30 years after the first group formed, newly diagnosed patient Erica began work with a national movement #MEAction. Along with the University of Rochester, she planned a screening of the documentary “Unrest” and a panel discussion with researchers from NIH backed programs at Cornell University.
While the earlier groups have disbanded, the individuals mentioned are still involved in research and/or advocacy. Sadly, Janet has passed away. Today, ME/CFS advocates have become largely active on social media and can be found on Facebook, Twitter and Instagram.
