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.
The recording of the GLP-1/GIP micro dosing for ME/CFS, Long Covid, MCAS and more is available now. The YouTube subtitles / transcript and time codes in description are not fully updated / complete. It takes the team awhile. As with most organizations, it needs more volunteers.
Great thread of posts from this Clinician's Roundtable on low dose GLP-1 / GIP meds for ME/CFS, MCAS, and more, by @brianvastag. Grateful to him for his spoons and interest.
In a few minutes I'll be making some live posts during this event: "**Clinician's Roundtable: Microdosing GLP-1/GIP Receptor Agonists in MECFS and Long Covid"** Patients with these difficult chronic conditions & their physicians are always experimenting with FDA-approved medicines & supplements & every other modality you can think of...this roundtable is the first I've heard of the Ozempic-class drugs being used. #MEcfs #LongCovid #medicine
In a few minutes I'll be making some live posts during this event:
"**Clinician's Roundtable: Microdosing GLP-1/GIP Receptor Agonists in MECFS and Long Covid"**
Patients with these difficult chronic conditions & their physicians are always experimenting with FDA-approved medicines & supplements & every other modality you can think of...this roundtable is the first I've heard of the Ozempic-class drugs being used.
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
Applied Clinical Discussion – Improving POTS and other MECFS issues by Treating Pelvic Venous Congestion. Steven J. Smith, MD, will be joined by guest panelist and co-author Peter Rowe, MD for interactive Q&A. Clinician questions will be prioritized. Dr. Smith will discuss hypotheses about how venous disorders may underlie some cases of POTS, fibromyalgia, ME/CFS, migraine, brain fog, IBS, vulvodynia, ADHD, & more. Dr Smith is an expert in Pelvic Congestion Syndromes and intervention with Ablation and Stenting. Dr. Smith, a retired interventional radiologist now focuses on research. He makes the case for poor blood flow being a core clinical issue. His studies show patient improvement across 5 centers, at 3-, 6-, and 12-month follow-ups, and across numerous symptoms. Studies published iin Phlebology: The Journal of Venous Disease: Nonpelvic comorbid symptoms of 45 patients with pain of pelvic venous origin, before and after treatment 8/24 pubmed.ncbi.nlm.nih.gov/39126670/ "Improvement in chronic pelvic pain, orthostatic intolerance and interstitial cystitis symptoms after treatment of pelvic vein insufficiency" 4/24 pubmed.ncbi.nlm.nih.gov/38050791/ "An online survey of pelvic congestion support group members regarding comorbid symptoms and syndromes" 7/22 pubmed.ncbi.nlm.nih.gov/35831253/ "Imaging findings of pelvic venous insufficiency in patients with postural orthostatic tachycardia syndrome" 8/20 pubmed.ncbi.nlm.nih.gov/32757696/ Other: Standing Up to POTS Podcast: Audio, with written transcript 11/24 https://www.standinguptopots.org/potscast/e234dr-steve-smith-on-how-fixing-pelvic-venous-disorders-improves-pots-and-other-syndromes
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
The next ME/CFS & LC Clinician's Roundtable hosted by Renegade Research and @RemissionBiome
is
Fri. Dec 6, '24, 1pm Eastern US.
Presenter is physician
Brayden Yellman, MD, of the Bateman Horne Center @batemanhorne.
Open to practitioners, researchers, patients, public. Free. Will be recorded and available at YouTube Channel for Remission Biome.
After presentation there is time for Q&A. Clinician questions prioritized.
Register here:
https://us06web.zoom.us/webinar/register/3217328995367/WN_FiUBcZDkR_-jIpBvqQ2_lQ
Dr. Yellman, from the Bateman Horne Center, will discuss his approach to diagnosing and treating patients with ME/CFS, Long COVID, and other Infection Associated Chronic Illnesses (IACI). https://batemanhornecenter.org/about/staff/brayden-yellman-md/
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.
Brian Vastag
Elly Brosius