Too tired / brain drained to write a good bio.
Account by
@ellybb aka @[email protected]
Website is cfsnova.com - a classic. Really. Still has some relevance on some pages, especially the Q&A, Our Way.
Members of our email lists
groups.io/g/CFSupport
groups.io/g/EGGdish
are familiar w
tilt tests, cytokine test panels, Marshall protocol, supplements, advocacy, disability LTD/SSDI, more & the value of social support fr those w compassion and similar experience.
Micro-dosing GLP-1 / GIP receptor agonist medicines for ME/CFS & Long Covid, a Clinician's Roundtable hosted by Renegade Research (RR) with Drs. Ruhoy, Kaufman, and Dempsey.
The doctors will discuss effectiveness, dosing, and low adverse events compared to other options. Audience invited to post questions.
Recording will be available on RR YouTube channel.
Friday, 10/25/25, 2 pm ET US, Free
https://us06web.zoom.us/webinar/register/1317582274807/WN_yLHOdU7vTuq_11xTRA2D9w
Next 3 webinars on ME/CFS & Long Covid hosted by Renegade Research:
Remission Biome Preliminary Results
Fri 1/17/25 - 1p ET US (10a PT US | 6 pm GMT) - https://tinyurl.com/2hryu4vu
Robert Naviaux, MD
“Cell danger response (CDR) inhibition of salugenesis—molecular and mechanical mechanisms and possible treatments in ME/CFS”
Fri 1/24/25 - 1p ET US
https://tinyurl.com/4c34kety
Johns Hopkins ME/CFS Clinic Update Part 1 (Clinical)
Drs. Azola and Rowe.
Sat 2/1/25 - 1p ET US
https://tinyurl.com/3yxhj2kx
Join us for an update on what we've been up to with analyzing the data for the Remission Biome project. We have found overrepresentation of several genetic variants in our participants, many of which have supportive and accessible treatment possibilities. We captured a dramatic change in a microbiome just before a transient remission event.
Ucoming Clinician's Roundtable, from
@renegaderes
On Fri. Dec 13, '24, 1p Eastern US
Alba Azola, MD @azolaalba
of
@hopkinskids
CFS & Related Disorder Program
(where Peter Rowe, MD, is)
will share her
Clinical approach to ME/CFS & long covid.
Free. For doctors, patients, researchers, caregivers, allies. Recording will be available later at RemissionBiome channel on Youtube.
Attendees get to participate in Q&A (practitioner questions prioritized).
https://us06web.zoom.us/webinar/register/5717329004428/WN_UsaKTi3nTk-Gr1HtEuf9Iw
Alba Azola, MD is an Assistant Professor of Physical Medicine and Rehabilitation. In 2023, Dr. Azola joined the Chronic Fatigue Clinic at the Children's Center, founded in 1996 by Dr. Peter Rowe, with the goal of expanding care to the pre and post pandemic adult ME/CFS population. Dr. Azola has been a panelist for Renegade Research events. We look forward to hearing her clinical approach to people with ME/CFS and similar complex conditions. Links for Dr. Azola Chronic Fatigue Syndrome (CFS) and Related Disorder Program at Johns Hopkins https://www.hopkinsmedicine.org/johns-hopkins-childrens-center/what-we-treat/specialties/adolescent-medicine/chronic-fatigue-syndrome Articles quoting Dr. Azola For patients with long COVID, chronic fatigue syndrome may offer a guiding star | NPR (November 2021) https://www.npr.org/2021/11/29/1058063444/for-patients-with-long-covid-chronic-fatigue-syndrome-may-offer-a-guiding-star In It For The Long Haul | Baltimore Magazine (November 2021) https://www.baltimoremagazine.com/section/covid19/battling-long-covid-ongoing-symptoms-changing-western-medicine-chronic-health-treatment/ EXPLAINER: What you should know about "long haul" COVID-19 | WUSA9 (June 2021) https://www.wusa9.com/article/news/health/coronavirus/long-haul-covid-19-what-you-should-know/65-12295cde-25e0-40bc-9279-290a5b85aebc COVID Long-haulers: What We Know About the Debilitating Symptoms that Last for Months | 7NewsDC (June 2021) https://wjla.com/news/coronavirus/covid-long-hauler-debilitating-symptoms-continue-months-after-diagnosis
Starting in less than 1 hour... MCAS Diagnosis
(Will it help you get a better quality of life with ME/CFS and other chronic illnesses? It has for me )
Saturday, June 22nd - 1 pm Eastern
Part 2, MCAS 102-A - Diagnosis
https://us06web.zoom.us/webinar/register/8317147488140/WN_AXHw_JsBTniqYFMcBMEy9w
In the second of this three part series, Dr. Afrin’s “MCAS 102-A” Dr. Afrin will focus on the details and complexities of diagnosing MCAS. Dr. Afrin is a noted Hematologist specialist and a pioneer in the area of mast cell disease research. To learn more about Dr. Afrin, please visit https://drtaniadempsey.com/lawrence-afrin/ The Renegade Research Clinician's Roundtable offers a dedicated forum for practicing clinicians engaged in the treatment of post-infectious chronic illness and those who want to better serve this patient population. This collaborative platform is designed to facilitate the presentation of diverse clinical approaches, foster discussions on individual cases, and encourage the exchange of best practices. Clinicians participating in this roundtable will have the opportunity to share their experiences, insights, and strategies in managing complex post-infectious conditions. The goal is to cultivate a collective knowledge base that can positively impact patient outcomes. By bringing together a community of experts, the roundtable aims to enhance the understanding of effective clinical practices, ultimately contributing to improved care for individuals navigating the challenges of post-infectious chronic illness.
Meet 2 scientists + 2 pt reps for T-cell & TREATMENT study:
Identification of CD8 T-cell dysfunction associated w symptoms in ME/CFS & Long COVID + tx with a nebulized antioxidant/anti-pathogen agent in a retrospective case series.
1pEDT, zoom 5-23-24 -
viral immunologists from the U of Mass & Roshan Kumar, PhD, Executive Director, External Innovation, HiFiBiO Therapeutics
Register
https://us06web.zoom.us/webinar/register/9017147503629/WN_uaDoEmb9ThWMNrwGbvu7gg
Please join a Research Roundtable with researchers Liisa K. Selin, MD PhD; Anna Gil, PhD, viral immunologists from the University of Massachusetts Chan Medical School Roshan Kumar, PhD, Executive Director, External Innovation, HiFiBiO Therapeutics; Rivka Solomon & Megan Fitzgerald, patient reps at PLRC. HiFIBIO is a clinical stage global biotech company focused on enhancing the probability of success for immunotherapies through its Drug Intelligence Science (DIS®) translational platform. They are working together on a research project awarded by the Patient-Led Research Fund, a project of Patient-Led Research Collaborative (PLRC) and funded by Balvi. HiFiBiO is utilizing its single cell profiling capabilities to analyze samples from Long COVID and ME/CFS patients. Together with the Selin Lab, their goal is to acquire deep insights into underlying immune mechanisms of these illnesses and understand the diversity in the patient population that could lead to potential diagnostic biomarkers and therapeutic innovations. More about their collaborative grant found at: Additionally, at the Roundtable the Selin Lab will discuss their new paper, identification of CD8 T-cell dysfunction associated with symptoms in ME/CFS and Long COVID and treatment with a nebulized antioxidant/anti-pathogen agent in a retrospective case series. To find more, please visit: https://rb.gy/mrqhgk https://rb.gy/w91qef You can find the paper at: https://rb.gy/zl5iey
The Renegade Research Clinician's Roundtable offers a dedicated forum for practicing clinicians engaged in the treatment of post-infectious chronic illness and those who want to better serve this patient population. This collaborative platform is designed to facilitate the presentation of diverse clinical approaches, foster discussions on individual cases, and encourage the exchange of best practices. Speakers in this roundtable will share their experiences, insights, and strategies in managing complex cranial, cervical, thoracic, and lumbar spine issues in hypermobile patients and the overlap with infection associated chronic conditions. The goal is to cultivate a collective knowledge base that can positively impact patient outcomes. By bringing together a community of experts, this roundtable aims to explore the prevalence and management of structural issues in ME, LC, IACI, as well as innovative diagnostics for Craniocervical Instability, Chiari, Eagle syndrome, thoracic outlet syndrome, and Tethered Cord. Dr. Vicenç Gilete – Neurosurgeon/Spine Surgeon, CCI/AAI, Chiari, Tethered Cord, Scoliosis. Dr. Gilete has over 25 years of experience within the neurosurgical field. He performs a variety of surgical cranio-cervical, thoracic, and lumbar spine procedures. Amy Hyde Smith – Director in charge of surgical cases. Amy supports patient-centered care with patient screening and education. Learn more at https://drgilete.com and The Spine Institute at https://drgilete.com/promohealth-group Send your questions ahead by filling out this form at https://forms.gle/EEt3CDergeZQNKkE9
@RemissionBiome is hosting ME/CFS &MESpine expert Peter Rowe, MD, who will be presenting to the
community on Feb 9 & 16!
What’s new in ME/CFS, OI/POTS, CCI, MCAS, and more
Sign up now! https://us06web.zoom.us/meeting/register/tZAodu6tqD4oHNeHFyC9BSF4o1mkxiCR76V_
Welcome! You are invited to join a webinar: Peter Rowe Renegade Research/RemissionBiome talks. After registering, you will receive a confirmation email about joining the webinar.