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ME/CFS San Diego

@mecfssd.bsky.social
1.6K followers 52 following 973 posts

ME/CFS San Diego, a 501c3 public charity, is working locally to raise awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), to help educate healthcare workers and researchers, to increase access and support for ME/CFS patients.

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ME/CFS San Diego @mecfssd.bsky.social · 17/09/2026
Medicaid Work Requirements Exclusions Resource : Starting 1/1/27, some ME/CFS patients 19–64 may need to apply for exclusion, while others meet other exclusion reasons. (not an expert) www.mecfssandiego.com/mecfs-resour...
Not Subject to Medicaid Work Requirements (May not be Permanent)
* Are you enrolled in or entitled to Medicare?
* Are you pregnant or entitled to postpartum medical assistance?
* Are you in a qualifying substance use disorder treatment program?
* Have you been released from incarceration within the last 3 months?
* Are you a veteran with a total disability rating?
* Are you AI/AN and federally excluded?
* Are you a PR, USVI, Guam, CNMI, or AS resident?
* Was your Medicaid eligibility determined through a:
   - disability-based,
   - SSI-based,
   - former-foster-youth-based,
   -blindness-based,
   -medically-needy-based, or
   -parent/caretaker-relative-based pathway?
NOTE: This is how you qualified for Medicaid, not whether you qualify now.

Potentially Subject
* NOT IN THE ABOVE CATEGORIES
* AND Are you between 19-64 years old?
* AND Is your Medicaid eligibility through:
   - ACA Medicaid expansion,
   - a 1115 waiver programs from GA, HI, MA, NY, OR, TN, UT, and WI
     (Need to check specific program - not all subject)
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ME/CFS San Diego @mecfssd.bsky.social · 05/08/2026
ME/CFS San Diego SSDI Application for ME/CFS/LC: a brief guide for patients. Covers the application stages, why many claims reach hearings, documenting functional limitations, PEM and fluctuating capacity, CPET considerations, and resources. www.mecfssandiego.com/mecfs-resour...
Image of a tablet showing a generic application form with the text "Applying for SSDI with ME/CFS"
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ME/CFS San Diego @mecfssd.bsky.social · 14/07/2026
Scott Hugo, 25+ patient advocates & @meactnet.bsky.social filed an ethics complaint over WIRED's Long COVID article. Learn why the Long COVID & ME/CFS communities are concerned, read the complaint & sign the petition: www.mecfssandiego.com/mecfs-advoca...
Advocacy alert about WIRED's Long COVID article, urging support for Scott Hugo and #MEAction's ethics complaint with calls to read the complaint and sign a petition.
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ME/CFS San Diego @mecfssd.bsky.social · 04/07/2026
Queen’s University Belfast study: recruiting ME/CFS patients 11-18 yo, exploring school experiences in Northern Ireland, aims to improve school understanding & support. forms.office.com/e/jihxb0Sz8B
Recruitment poster from Queen’s University Belfast for a study on school experiences of young people aged 11 to 18 with ME/CFS and their parents. A trainee educational psychologist is inviting participation in interviews to improve school support. Contact nmclaughlin22@qub.ac.uk
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ME/CFS San Diego @mecfssd.bsky.social · 03/07/2026
ME/CFS can be understood as a bank account where every activity is a withdrawal. When the balance is low, recovery is harder and overspending can trigger delayed crashes (PEM) or an “account freeze.” Pacing helps avoid overdrafts and penalties. www.mecfssandiego.com/mecfs-resour...
Illustration depicting ME/CFS energy balance as a scale, with energy bank overdrawn due to exertion costs, delayed deductions (PEM), and compounding interest.
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ME/CFS San Diego @mecfssd.bsky.social · 19/06/2026
Sallie Rediske, MPT, discusses PT, OT, SLP, functional impairment, finding safe providers, insurance, advocacy, & access for people with ME/CFS. www.youtube.com/watch?v=cjvi... Previous talks: Dr. Ruby Tam, Jaime Seltzer, Galen Warden, & Dr. Benjamin Natelson www.youtube.com/@MECFSSD
Virtual Myalgic Encephalomyelitis & Chronic Fatigue (ME/CFS) Group
ME/CFS Expert Event
Sallie Rediske ME/CFS Patient & Advocate, MPT
youtube video recording and transcript now available at https://www.youtube.com/watch?v=cjvi806FQYo or QR code
Q&A + Accessing PT, OT, SLP & functional care in ME/CFS https://www.youtube.com/@MECFSSD/videos for other ME/CFS Expert Events
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ME/CFS San Diego @mecfssd.bsky.social · 12/06/2026
The ME/CFS community really needs psychologists and psychiatrists who understand the biomedical reality of ME/CFS, not those pushing psychological models or treatments that are disproven and potentially harmful in ME/CFS. www.mecfssandiego.com/mecfs-resour...
A patient in bed on a video call with a healthcare professional.
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ME/CFS San Diego @mecfssd.bsky.social · 08/06/2026
We sent an open letter to @wired.com in response to “The Painful Truth About Long Covid.” We are concerned it misrepresents ME/CFS and Long COVID by overemphasizing a few recovery stories and underrepresenting decades of biomedical research and patient impact. www.mecfssandiego.com/mecfs-advoca...
Image of a red Megaphone with the text "ADVOCACY ALERT" and 
An Open Letter
to WIRED magazine
ME/CFS San Diego" written on a protest sign with a ME/CFS San Diego blue ribbon in the upper right
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ME/CFS San Diego @mecfssd.bsky.social · 06/06/2026
ME/CFS San Diego Expert VIRTUAL Event w/ Sallie Rediske, MPT: Accessing PT, OT, SLP & functional care in ME/CFS. Submit Questions: PM, comment, or info@mecfssandiego.com Event recording will be shared at www.youtube.com/@MECFSSD Register: us06web.zoom.us/meeting/regi...
Virtual Myalgic Encephalomyelitis & Chronic Fatigue (ME/CFS) Group ME/CFS Expert Event Sallie Rediske ME/CFS Patient & Advocate, MPT Jun 11, 2026 12:00 PM Pacific Time PLEASE NOTE: This is a Virtual Zoom Event A Recording and Transcript will be available at https://www.youtube.com/@mecfssdME/CFS Q & A + Accessing PT, OT, SLP & functional care in ME/CFS https://www.youtube.com/@MECFSSD/videos for other ME/CFS Expert Events
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ME/CFS San Diego @mecfssd.bsky.social · 27/05/2026
ME/CFS San Diego Heat Guide 2026: Updated resource for managing ME/CFS heat intolerance. This page features an evidence-based medication risk guide, practical cooling strategies, & tips for temperature instability: www.mecfssandiego.com/mecfs-resour... (website & PDF)
ME/CFS San Diego Resource: Medications/Supplements That May Worsen Heat Intolerance in ME/CFS and Related Conditions with a sunny yellow background and an image of a thermometer and the ME/CFS San Diego Logo
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ME/CFS San Diego @mecfssd.bsky.social · 12/05/2026
A Special Thank You to everyone who is sharing ME/CFS awareness and information on May 12 International ME/CFS and FM Awareness Day
Tina Yesenofski of Wool + Wander - display of ME/CFS Awareness Ribbons
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ME/CFS San Diego @mecfssd.bsky.social · 10/05/2026
May is ME/CFS Awareness Month and May 12 is International ME/CFS Awareness Day. ME/CFS San Diego invites you to show support with a blue crocheted ribbon and spread awareness. Learn more www.mecfssandiego.com/May2026Crochet
One of our uber volunteers displaying a May Crochet ME/CFS Awareness ribbon that she crocheted and packaged!
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ME/CFS San Diego @mecfssd.bsky.social · 10/05/2026
Much Love <3
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ME/CFS San Diego @mecfssd.bsky.social · 07/05/2026
Insurance in-person requirements can limit telehealth access. Disability laws (ADA, ACA §1557, §504) still apply. If in-office care is difficult or potentially harmful, telehealth access may be appropriate. www.mecfssandiego.com/mecfs-resour...
Text "Patients have disability and access rights that still apply" 
Line drawing of a patient in bed separated from a Doctor Telehealth Call on a Tablet by a brick wall labeled "Insurance Barriers to Telehealth Access"
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ME/CFS San Diego @mecfssd.bsky.social · 23/04/2026
CMS zoom listening session Section 1915(c)(11) (allows states to expand Medicaid HCBS to home supports). Input sought on eligibility, services, & implementation. CMS will listen to lived experience & ideas but not respond; 5/26/26 10:30 AM PST
An image of a red megaphone with the text "ADVOCACY ALERT
Centers for Medicare &amp; Medicaid Services (CMS)
Zoom Listening Session
Section 1915(c)(11) Medicaid HCBS
Home supports without institutional-level eligibility May 19, 2026 10:30 AM PT (Virtual)
Sharing Lived-Experience helps because ME/CFS is not consistently included in eligibility frameworks, yet many patients need in-home support."
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ME/CFS San Diego @mecfssd.bsky.social · 21/04/2026
Wei et al. meta-analysis on ME/CFS exercise pools biased RCTs (subjective outcomes, no blinding, weak reporting, inconsistent harm data, incl. PACE). Reported claims come from low-quality evidence & don't provide reliable evidence that exercise is effective or safe in ME/CFS. doi.org/10.3389/fneu...
Four minimal icons with text captions 1- an empty battery with "profound fatigue", 2- an arm raised with elbow bent in an L shape with "worsening after activity", 3- a bed with "disrupted sleep", and 4- a profile of a head with scribbles instead of a brain with "brain fog"
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ME/CFS San Diego @mecfssd.bsky.social · 21/04/2026
ME/CFS Awareness Month & May 12: list of legislative resolutions, statutory recognition, executive proclamations. Advocacy Templates: www.mecfssandiego.com/mecfs-advoca...
Background - barely visible outlines of people standing, in wheelchairs, in bed.  With the text in Orange "Shine a Light on Millions Missing" with a Blue ME/CFS awareness ribbon in the bottom left hand corner.
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ME/CFS San Diego @mecfssd.bsky.social · 15/04/2026
People with ME/CFS are often targeted by programs promising recovery. Not all are safe. Use this checklist to spot red flags: www.mecfssandiego.com/mecfs-resour...
ME/CFS Recovery Program 
Legitimacy Checklist 
(with a clipart image of a pencil and a partially filled checklist)
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ME/CFS San Diego @mecfssd.bsky.social · 12/04/2026
The U.S. healthcare system isn’t built for multi-system diseases like ME/CFS. Patients fall through specialist silos, even though clinical guidance exists: www.mecfssandiego.com/mecfs-resour...
Titled ME/CFS: Lost in the Gaps between Specialties
Drawing of rows of silos - the front row of silos are labeled: Neurology 1935, Internal Medicine 1936, Cardiology 1941 , Gastroenterology 1941, Immunology/Allergy 1971, Endocrinology 1972, Infectious Disease 1972, Rheumatology 1972 Dates reflect first U.S. board certification (ABMS era).
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ME/CFS San Diego @mecfssd.bsky.social · 09/04/2026
Stress, trauma, & mental health challenges can cause PEM or trigger clinical ME/CFS but are probably not a primary cause. Care can support & improve a subset of patients, but cannot treat ME/CFS. www.mecfssandiego.com/mecfs-resour...
Clipart of a brain in profile
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ME/CFS San Diego @mecfssd.bsky.social · 08/04/2026
For anyone confused by ME vs CFS vs ME/CFS, here’s a solid explanation of what the names mean and why ME/CFS San Diego and most experts and countries use ME/CFS. www.mecfssandiego.com/mecfs-resour...
Different names for ME/CFS in a Heart-shaped Word Cloud.
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ME/CFS San Diego @mecfssd.bsky.social · 03/04/2026
💙April Call to Action💙 Help @mecfssd.bsky.social prepare for ME/CFS Awareness Month by making blue ribbons or helping package, distribute, or connect us with organizations and media to spread awareness Learn more www.mecfssandiego.com/mecfs-advoca...
Informational graphic announcing an April Call to Action for ME/CFS awareness, featuring yarn, a crochet hook, and a blue awareness ribbon, alongside ways to volunteer and a QR code to https://www.mecfssandiego.com/mecfs-advocacy/May2026MillionsMissing.
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ME/CFS San Diego @mecfssd.bsky.social · 31/03/2026
The mini-review on hydrogen water for ME/CFS is misleading. The only double-blind trial failed (placebo did better). Pilot studies were small, non-blinded, and unreliable. 27% dropped out due to side effects. www.frontiersin.org/journals/med...
Molecular model of water showing hydrogen and oxygen atoms and hydrogen bonds
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ME/CFS San Diego @mecfssd.bsky.social · 28/03/2026
MEActionUK post: The UK Department of Health and Social Care (DHSC) has paused plans to commission specialist care for very severe ME/CFS until at least April 2027 due to changes in integrated care boards and NHS England responsibilities. www.facebook.com/MEActNetUK/p...
NHS placard on building
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ME/CFS San Diego @mecfssd.bsky.social · 18/03/2026
💙 Help ME/CFS San Diego raise awareness for ME/CFS this May! We’re preparing for May awareness month and May/12 & need individuals to help distribute ribbons + makers to create them. Groups and Organizations: Please partner with us to expand our reach. DM or email info@mecfssandiego.com 💙
ME/CFS Crocheted Blue Awareness Ribbon
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ME/CFS San Diego @mecfssd.bsky.social · 06/03/2026
UC San Diego students have been recognized, by ME/CFS San Diego, for their innovative essays advancing awareness and care for ME/CFS. First Place: Ariana Lyman Second Place: Nicholas Lam Third Place: Vivian Tran Read the winning essays and learn more: www.mecfssandiego.com/MECFSSD-UCSD...
Announcement poster featuring headshots of the 2025-2026 ME/CFS San Diego UCSD Student Essay Contest winners: Ariana Lyman (First Place), Nicholas Lam (Second Place), and Vivian Tran (Third Place), alongside an informational about ME/CFS and a 1st place pen awarded along with the cash prizes.
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ME/CFS San Diego @mecfssd.bsky.social · 04/03/2026
Many people think of AI and social media as lazy distractions or shortcuts. For many disabled people, they’re powerful accessibility tools, helping us communicate, organize, and connect in ways that wouldn’t be possible otherwise.
Infographic illustrating various items like a wheelchair, hearing aid, social media logos, smartphone, glasses, packaged vegetables, headphones, subtitled TV, AI chip, and various app icons, all captioned as accessibility aids.
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ME/CFS San Diego @mecfssd.bsky.social · 23/02/2026
Decades of research and millions spent have not found ANY “psychosomatic” version of ME/CFS. BPS constructs like FND, SSD, and MUS do not produce core ME/CFS features such as post-exertional malaise or metabolic dysfunction. They are misdiagnoses, not ME/CFS.
“ME/CFS is a Biomedical Disease.” “THE BIOLOGY,” lists key physiological features of ME/CFS: metabolic dysfunction with impaired ATP/energy production; vascular dysfunction with reduced brain blood flow; immune dysfunction with chronic cytokine dysregulation; decreased oxygen uptake (VO2 max) after exertion; and neurological dysfunction with neuroinflammation.“MISDIAGNOSES,” lists conditions often misapplied to ME/CFS: Bodily Distress Disorder (BDD); Biopsychosocial constructs (BPS); Functional Neurological Disorder (FND); Somatic Symptom Disorder (SSD); Medically Unexplained Physical Symptoms (MUPS/MUS); and Persistent Physical Symptoms (PPS). “Millions spent globally. Decades of study. No research has ever identified a Biopsychosocial (BPS) version of ME/CFS. ”The graphic uses bullet points for clarity and emphasizes the distinction between ME/CFS’s measurable biological dysfunctions and psychosomatic/functional misdiagnoses.
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ME/CFS San Diego @mecfssd.bsky.social · 20/02/2026
Coming Soon: 2025–2026 UCSD ME/CFS Essay Contest Winners! Help us amplify these student voices advancing care for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). We’re actively seeking media coverage. Please DM us or email info@mecfssandiego.com with any contacts.
A megaphone announcing "Coming Soon 2025–2026 UCSD ME/CFS Essay Contest Winners"  Help Us Amplify These Student Voices.  We are seeking Media Coverage.  Please message or email (info@mecfsSanDiego.com) with any contacts.
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ME/CFS San Diego @mecfssd.bsky.social · 12/02/2026
Our Reddit ME/CFS communities have been taken offline again by Reddit automated enforcement (no rules, broken no feedback). This is the 5th disruption in the past year. Repeated instability makes it very difficult to build safe, continuous support spaces. 💙ME/CFS San Diego
The word "Banned" in red with a red border
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ME/CFS San Diego @mecfssd.bsky.social · 12/02/2026
After reading about evidence-based versus eminence-based medicine on @tomkindlon.bsky.social , I found this article by Dr. Ruth D. Williams. It explains why combining research, clinical expertise, and patient experience is essential. It resonates for ME/CFS. www.aao.org/eyenet/artic...
Illustration of three pillars labeled “Best Research Evidence,” “Clinical Expertise,” and “Patient & Lived Experience” supporting the concept of Evidence-Based Medicine, with the subtitle “Integrating Science, Skill, Patient Needs for Optimal Care.” This emphasizes that optimal medical care requires balancing scientific research, clinical skill, and patients’ lived experiences.
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ME/CFS San Diego @mecfssd.bsky.social · 12/02/2026
TSH only shows the brain’s signal to the thyroid. For ME/CFS, a full panel, Free T4, Free T3, Reverse T3, thyroid antibodies, ferritin, is better to see production, conversion, autoimmunity, and cellular function.
An infographic titled 'The TSH Blind Spot' featuring two clipboards and an ME/CFS San Diego awareness ribbon. The left clipboard lists what TSH measures: brain signals, the brain-thyroid loop, and blood levels. The right clipboard lists what it misses: Hashimoto antibodies, T4 to Reverse T3 conversion, cellular uptake, and low iron. The bottom caption reads: 'A normal TSH only tells part of the story.'
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ME/CFS San Diego @mecfssd.bsky.social · 08/01/2026
Help advance research on chronic health conditions! The @batemanhornecenter.bsky.social is inviting you to complete a short interest survey to hear about potential research opportunities. Take the survey: bit.ly/49y4bfs Questions? research@batemanhornecenter.org or 801-532-8311
BATEMAN HORNE CENTER RESEARCH OPPORTUNITIES
OUR STUDIES
Our research department is conducting studies to better understand chronic health conditions.
Complete survey to express interest and be contacted about current or future studies.

QUESTIONS? CONTACT OUR RESEARCH TEAM
801-532-8311
research@batemanhornecenter.org
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ME/CFS San Diego @mecfssd.bsky.social · 01/01/2026
NIH NINDS Director Walter Koroshetz is stepping down after his reappointment was denied. As Chair of the Trans-NIH Working Group and NIH Co-lead for the ME/CFS Research Roadmap, he was a vital partner. His exit creates a leadership vacuum that threatens to stall progress.
A photo of NIH NINDS Director 2015-2025 Walter Koroshetz
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ME/CFS San Diego @mecfssd.bsky.social · 26/12/2025
Submissions NEEDED: UCSD students (all levels), now’s a great chance to share your vision for a future that better supports people with ME/CFS in the 2nd Annual ME/CFS San Diego Essay Contest. Submit by Dec 31 → www.mecfssandiego.com/MECFSSD-UCSD...
An announcement flyer for the "ME/CFS San Diego’s 2025-2026 UCSD Essay Contest." The headline reads, "Design a Future Where People with ME/CFS Can Truly Thrive." The flyer features a blue ribbon, a hand drawing a lightbulb idea, and details about cash prizes of up to $500. It states the contest is open to all current UCSD students with a submission deadline of December 31, 2025.
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ME/CFS San Diego @mecfssd.bsky.social · 12/12/2025
As U.S. healthcare is debated, a simplified, cost‑controlling national framework could cut $450B+ annually, expand access/care continuity, support earlier diagnosis & evidence-based care for ME/CFS patients. Contact your congress members to champion reforms: www.congress.gov/members/find...
How a Simplified Healthcare Framework Helps
ME/CFS Patients

Expanded Medical Access
Reduced Reliance on Emergency Care
Evidence-Based Clinical Guidelines
Earlier Diagnosis
Continuity of Care
Multidisciplinary Symptom Management
Reduced Financial Stress
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ME/CFS San Diego @mecfssd.bsky.social · 09/12/2025
Expecting someone with ME/CFS to minimize illness, saying 'I’m healing' instead of 'I’m sick', erases reality, victim blames, and makes it harder for others to understand and support us. But the catch-22 is, it’s hard to speak up when we’re chronically ill and energy-deficient.
An image of a chronically ill patient holding a drink with a blanket around their shoulders in a dark room with a piece of paper on a table with medications, a pill bottle, a glass of water.  The piece of paper has "ME/CFS is hard." written on it.
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ME/CFS San Diego @mecfssd.bsky.social · 05/12/2025
Congratulations to Kieran Gharti, winner of the @actionforme.bsky.social 2025 Medical Student Essay Competition! Kieran, a third-year MBChB Medicine student at @UoMMedicine, highlighted the urgent need for more research into ME/CFS in his winning essay.
A photo of Kieran Gharti, a third-year MBChB Medicine student at the University of Manchester, standing in a casual setting with a bookshelf in the background. Kieran is wearing a grey medical scrub and smiling at the camera. The image includes graphics and text that read "The winner of our Medical Student Essay Competition is… Kieran Gharti!" and information about his current studies. The bottom of the image features the slogan “Improving lives and accelerating understanding” with the Action for M.E. logo.
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ME/CFS San Diego @mecfssd.bsky.social · 05/12/2025
UC San Diego students (undergraduate through post-doc): The ME/CFS Essay Contest deadline is 12/31/2025. Submit your ideas on how to create a future where people with ME/CFS can truly thrive. Prizes up to $500! Learn more and submit: bit.ly/mecfsSDessay
A flyer for “ME/CFS San Diego’s 2025–2026 UCSD Essay Contest.” The headline reads: “Design a Future Where People with ME/CFS Can Truly Thrive.” The deadline for submissions is December 31, 2025. A description explains that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a complex, disabling, and under-recognized disease. A hand holds a pencil next to a word bubble that says: “Let’s reimagine life with ME/CFS… my ideas, their future. A more accessible life for ME/CFS patients.” The flyer includes a QR code linking to more information, notes that cash prizes are up to $500 and winning essays may be published, and shows the ME/CFS San Diego logo. Text at the bottom states the contest is open to all current UCSD students.
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ME/CFS San Diego @mecfssd.bsky.social · 04/12/2025
@batemanhornecenter.bsky.social virtual support: Tues, Dec 9, Managing Holidays with Chronic Illness, moderator Meredith Mehner, LCSW batemanhornecenter.zoom.us/meeting/regi... & Tues, Dec 16, Freedom from Thinking Traps, moderator Timothy Weymann, LCSW batemanhornecenter.zoom.us/meeting/regi...
Bateman Horne Center Support Group Events (Bateman Horne Graphics)
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ME/CFS San Diego @mecfssd.bsky.social · 04/12/2025
Bateman Horne Center December “Coffee” with a Clinician: Pacing for Holidays and Special Events. Wednesday, December 10 at 10:00 am MST (9 am PT / 11 am CT / 12 pm ET). Amy Mooney, MS OTR/L, Melinda Maxwell, PT, moderated by Clayton Powers, DPT. Register: batemanhornecenter.zoom.us/meeting/regi...
Bateman Horne "Coffee with a Clinician" free virtual event series
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ME/CFS San Diego @mecfssd.bsky.social · 04/12/2025
New DecodeME/PrecisionLife preprint finds 22k genetic signatures + 259 core genes in ME, implicating neuro, immune, stress-response & Ca²⁺ pathways, overlap to long COVID. Strong evidence for a polygenic, heterogeneous disease. Early but important. medrxiv.org/content/10.64898/2025.12.01.25341362v2
Figure 3. Analytical pipeline for Discovery and Refinement of disease signatures and Testing of signature count score for ME. 
The Discovery and Refinement datasets are illustrated in Figure 1. These processes are described further in the 
Supplementary Methods section.
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ME/CFS San Diego @mecfssd.bsky.social · 03/12/2025
ME/CFS makes every symptom a puzzle. A rough MCAS flare + weird insulin resistance (T1D) turned out to be from Smart Balance quietly adding pea protein isolate. If you’re suddenly reacting to trusted foods, check for ingredient changes. Hope this helps someone.
MCAS Heads up!  Unfortunately changed ingredients lists are not always well-advertised (includes an old and new ingredient list for Smart Balance Original Spread)
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ME/CFS San Diego @mecfssd.bsky.social · 02/12/2025
A psychology student at the University of Hull is recruiting English-speaking ME/CFS patients for a study on the psychological impact and lived experience of ME/CFS. Not a BPS causation study. Anonymous 20-min survey: run.pavlovia.org/pavlovia/sur...
A recruitment poster from the University of Hull titled “Participants needed.” The poster states that the study involves completing an online survey that takes less than 20 minutes and includes questions about CFS symptoms, self-perception, and current mood. Eligible participants are adults (18+) who are diagnosed with, or awaiting diagnosis of, Chronic Fatigue Syndrome and can read and write English. To take part, individuals are instructed to click the link provided in the accompanying post to access the information sheet and survey. The poster notes that all information is anonymous. Contact details listed are the researcher’s email, e.mark-2022@hull.ac.uk
, and the dissertation supervisor’s email, Rachel.Anderson@hull.ac.uk
. The University of Hull logo appears at the bottom.
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ME/CFS San Diego @mecfssd.bsky.social · 22/11/2025
A new brain imaging study shows that chronic energy metabolism and neuroinflammatory abnormalities are detectable in GWI patients only with short echo time MRS. Future ME/CFS research may need short echo time MRS to reveal brain energy abnormalities. www.nature.com/articles/s41...
Acquisition of spectra from a Gulf War veteran with LC Model to estimate concentrations of N-acetylaspartate (NAA), total creatine (tCr) and choline (Cho). (A) Spectroscopy voxel positioning in the right basal ganglia. (B) A 3T 1H-MR spectrum (TE = 30 ms) of the left basal ganglia of a representative subject processed using LC Model. Metabolites detected with acceptable reliability are shown in bold font in the table on the right.
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ME/CFS San Diego @mecfssd.bsky.social · 21/11/2025
Join the LC-REVITALIZE Long COVID Study! Adults 18–65 with persistent Long COVID can participate in San Diego (longcovid@fhcsd.org | 619-324-8677) or 7 other global sites. 6 months, 8 visits, FDA-approved drugs tested. Reimbursement provided. clinicaltrials.gov/study/NCT069...
Long COVID Clinical Research Treatment Study at Family Health Centers of San Diego. Researchers are recruiting adults diagnosed with or experiencing signs of Long COVID to participate in the LC-Revitalize study. The study tests FDA-approved drugs upadacitinib and pirfenidone to determine their safety and effectiveness. Participation lasts six months and includes eight visits with physical assessments, blood draws, questionnaires, and evaluation of cardiovascular and pulmonary health. Participants will be reimbursed for completed visits. Eligible participants must be 18 to 65 years old, able to provide consent in English or Spanish, and have had COVID-19 within the past four years, confirmed by PCR, antigen test, or probable infection with epidemiologic link. Participants must have persistent or new Long COVID symptoms for at least three months, lasting two months or more with no other explanation. Participants must experience at least one symptom cluster: fatigue, breathing difficulties, circulation problems, memory, thinking, or communication issues, or muscle and joint pain. Interested individuals should contact the FHCSD study team via email at longcovid@fhcsd.org
 or phone/text at 619-324-8677. IRB number IRB-25-0209, approval date October 7, 2025.
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ME/CFS San Diego @mecfssd.bsky.social · 14/11/2025
Federal funding bill update: Medicare telehealth extended until 1/31/2026 NIH & health agencies funded at last year's levels Community Health Centers & workforce programs funded Missing: No permanent telehealth reform No new ME/CFS research funding ACA tax credits not included
Federal Funding Bill
UPDATE
Some ME/CFS Impacts
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ME/CFS San Diego @mecfssd.bsky.social · 09/11/2025
Important SNAP Update for ME/CFS – Nov 2025: USDA ordered states to undo full SNAP payments. Partial benefits are valid; full payments may be disputed. The ME/CFS community urgently needs stable SNAP, affordable ACA coverage, and reliable telehealth. Contact legislators: www.usa.gov/elected-offi...
SNAP Program Cover Image
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ME/CFS San Diego @mecfssd.bsky.social · 09/11/2025
ME/CFS virus study: www.medrxiv.org/content/10.1... . Varicella-Zoster Virus (VZV) found in 6 of 17 patients, none in controls. Limitations: only plasma and DNA tested, small sample size, may miss latent/reactivating viruses.
Figure 2. Virus sequences detected in each clinical sample. This figure 
presents a heatmap of those molecular probes which are significantly 
enriched. The rows correspond to individual probes. The right labels 
present the virus name. The columns correspond to the individual clinical 
samples. The top color bar indicates the group (blue, negative controls 
[water reacted with the probe ensemble; no DNA present]; pink, ME/CFS 
patients; green, healthy controls.) The bottom labels give the identification 
of each clinical sample. Cell colors indicate the presence or absence of the 
molecular probe in the sample (red, presence; white, absence).
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ME/CFS San Diego @mecfssd.bsky.social · 06/11/2025
@BatemanHorne's November Support Groups offer safe, understanding spaces for people with ME/CFS, IACCs, & loved ones. Nov 11: Denial, Resistance & Gaslighting: batemanhornecenter.zoom.us/meeting/regi... Nov 18: Acquainted with Grief: batemanhornecenter.zoom.us/meeting/regi...
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