ME/CFS San Diego @mecfssd.bsky.social · 17/09/2026Medicaid 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... 000
ME/CFS San Diego @mecfssd.bsky.social · 05/08/2026ME/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... 002
ME/CFS San Diego @mecfssd.bsky.social · 14/07/2026Scott 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... 076
ME/CFS San Diego @mecfssd.bsky.social · 04/07/2026Queen’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 003
ME/CFS San Diego @mecfssd.bsky.social · 03/07/2026ME/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... 285
ME/CFS San Diego @mecfssd.bsky.social · 19/06/2026Sallie 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 020
ME/CFS San Diego @mecfssd.bsky.social · 12/06/2026The 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... 091
ME/CFS San Diego @mecfssd.bsky.social · 08/06/2026We 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... 2258
ME/CFS San Diego @mecfssd.bsky.social · 06/06/2026ME/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... 000
ME/CFS San Diego @mecfssd.bsky.social · 27/05/2026ME/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) 034
ME/CFS San Diego @mecfssd.bsky.social · 12/05/2026A Special Thank You to everyone who is sharing ME/CFS awareness and information on May 12 International ME/CFS and FM Awareness Day 000
ME/CFS San Diego @mecfssd.bsky.social · 10/05/2026May 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 030
ME/CFS San Diego @mecfssd.bsky.social · 07/05/2026Insurance 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... 010
ME/CFS San Diego @mecfssd.bsky.social · 23/04/2026CMS 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 000
ME/CFS San Diego @mecfssd.bsky.social · 21/04/2026Wei 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... 020
ME/CFS San Diego @mecfssd.bsky.social · 21/04/2026ME/CFS Awareness Month & May 12: list of legislative resolutions, statutory recognition, executive proclamations. Advocacy Templates: www.mecfssandiego.com/mecfs-advoca... 000
ME/CFS San Diego @mecfssd.bsky.social · 15/04/2026People 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... 030
ME/CFS San Diego @mecfssd.bsky.social · 12/04/2026The 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... 140
ME/CFS San Diego @mecfssd.bsky.social · 09/04/2026Stress, 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... 040
ME/CFS San Diego @mecfssd.bsky.social · 08/04/2026For 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... 185
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... 021
ME/CFS San Diego @mecfssd.bsky.social · 31/03/2026The 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... 020
ME/CFS San Diego @mecfssd.bsky.social · 28/03/2026MEActionUK 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... 010
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 💙 032
ME/CFS San Diego @mecfssd.bsky.social · 06/03/2026UC 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... 030
ME/CFS San Diego @mecfssd.bsky.social · 04/03/2026Many 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. 010
ME/CFS San Diego @mecfssd.bsky.social · 23/02/2026Decades 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. 1101
ME/CFS San Diego @mecfssd.bsky.social · 20/02/2026Coming 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. 173
ME/CFS San Diego @mecfssd.bsky.social · 12/02/2026Our 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 030
ME/CFS San Diego @mecfssd.bsky.social · 12/02/2026After 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... 010
ME/CFS San Diego @mecfssd.bsky.social · 12/02/2026TSH 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. 010
ME/CFS San Diego @mecfssd.bsky.social · 08/01/2026Help 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 020
ME/CFS San Diego @mecfssd.bsky.social · 01/01/2026NIH 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. 082
ME/CFS San Diego @mecfssd.bsky.social · 26/12/2025Submissions 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... 083
ME/CFS San Diego @mecfssd.bsky.social · 12/12/2025As 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... 000
ME/CFS San Diego @mecfssd.bsky.social · 09/12/2025Expecting 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. 150
ME/CFS San Diego @mecfssd.bsky.social · 05/12/2025Congratulations 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. 092
ME/CFS San Diego @mecfssd.bsky.social · 05/12/2025UC 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 031
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... 011
ME/CFS San Diego @mecfssd.bsky.social · 04/12/2025Bateman 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... 010
ME/CFS San Diego @mecfssd.bsky.social · 04/12/2025New 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 030
ME/CFS San Diego @mecfssd.bsky.social · 03/12/2025ME/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. 010
ME/CFS San Diego @mecfssd.bsky.social · 02/12/2025A 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... 021
ME/CFS San Diego @mecfssd.bsky.social · 22/11/2025A 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... 094
ME/CFS San Diego @mecfssd.bsky.social · 21/11/2025Join 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... 042
ME/CFS San Diego @mecfssd.bsky.social · 14/11/2025Federal 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 060
ME/CFS San Diego @mecfssd.bsky.social · 09/11/2025Important 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... 021
ME/CFS San Diego @mecfssd.bsky.social · 09/11/2025ME/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. 000
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... 010