ME/CFS San Diego

ME/CFS San Diego are patients and/or caregivers sharing information, support for each other, and education about Myalgic Encephalitis/ Chronic Fatigue Syndrome

[ME/CFS San Diego @MECFSSD]

Free @MassMECFS Zoom: “Managing Your Energy Envelope” (pacing). Sun June 28, 2026, 4pm ET. Share lived experience + learn from others on avoiding crashes/PEM. Free, not recorded. All welcome. https://t.co/bJwkh8T99z

[ME/CFS San Diego @MECFSSD]

Yale-Mount Sinai Cell study on Long COVID: https://t.co/CHMRsJtaEo found autoantibodies in some patients; IgG induced pain, fatigue-like behavior, and neuro changes in mice, suggesting they may contribute to symptoms. https://t.co/i3hgolh5O8

[ME/CFS San Diego @MECFSSD]

New open-access review by the Klimas & Nathanson labs summarizes how multi-omics and machine learning can study ME/CFS biological heterogeneity and explore potential molecular subtypes beyond symptom-based classification. https://t.co/qPMCOAJ4EW

[ME/CFS San Diego @MECFSSD]

@BatemanHorne Blog: “It’s not POTS" does not mean "it’s not Dysautonomia.” Most ME/CFS Dysautonomia presents as orthostatic intolerance (OI); more common than POTS or OH combined. "Patients need clinical pathways that recognize the full spectrum" https://t.co/8Dholyc3wL

[ME/CFS San Diego @MECFSSD]

@PolyBio (Balvi-funded) expands Long COVID low-dose rapamycin trial with open-label extension studying interferon signaling & T-cell exhaustion https://t.co/54f2rae5aT

[ME/CFS San Diego @MECFSSD]

Dr. Stephanie E. Haridopolos, M.D., serves as Acting Chief of Staff and Senior Advisor at HHS - this is an unprecedented recognition of ME/CFS and we need to follow up!!!

[ME/CFS San Diego @MECFSSD]

@MEActNet is collecting brief thank-you notes for Dr. Haridopolos to support advocacy efforts. Please watch her Millions Missing speech: https://t.co/MXUIlvYfvb and email your note ASAP (by 6/3 if possible) to [email protected]

[ME/CFS San Diego @MECFSSD]

@polybioRF (Balvi-funded) expands Long COVID low-dose rapamycin trial with open-label extension studying interferon signaling & T-cell exhaustion https://t.co/9dQuYFYc56

[ME/CFS San Diego @MECFSSD]

Bookshare https://t.co/XDdM4DfEpX: offers a huge collection of public domain books free to anyone. It also has an accessible copyright library for people with qualifying disabilities; ME/CFS may qualify depending on functional impairment. Many books have accessible formats.

[ME/CFS San Diego @MECFSSD]

RTHM & Patient-Led Research Collaborative (PLRC) Webinar June 12, 12:30 pm ET: Long COVID Treatment Guide by RTHM + PLRC. Clinicians and patient advocates discuss 24 meds plus other treatment options and how to use the guide in care discussions. https://t.co/GpdnvE0GTQ

[ME/CFS San Diego @MECFSSD]

CMS Interim Final Rule 6/1: requiring some Medicaid enrollees to meet monthly work or activity requirements to keep coverage. It is open for public comment. Comments can request protections for ME/CFS, disability exemptions, and consistent state rules. https://t.co/W96MJjE2VU

[ME/CFS San Diego @MECFSSD]

OMB has proposed changes to federal grant rules (OMB-2026-0034). This may affect ME/CFS research funding and stability. You can comment: oppose early ending of research grants, support stable long-term funding, and protect specialized disease research. https://t.co/p2PBOd9EVG

[ME/CFS San Diego @MECFSSD]

@OpenMedF Video - Ron Davis and Danielle Meadows: the importance of research https://t.co/2f7BYeyRw4

[ME/CFS San Diego @MECFSSD]

Cell May 2026: Two independent labs (Iwasaki Lab & Chen et al.) published parallel long COVID studies. Injecting patient IgG into mice replicated fatigue, pain, and small fiber nerve damage, directly linking autoantibodies to these symptoms. https://t.co/AKftOUWySm

[ME/CFS San Diego @MECFSSD]

@BatemanHorne Recaps:
5/13 Coffee with Clinician:
https://t.co/GKK4JmbYCD
https://t.co/4ifaotJCsM
https://t.co/mUgzfd1Mn1
Support Group:
5/5 https://t.co/7GZQVsF4Me
5/19 https://t.co/Cvfle4NnB2

[ME/CFS San Diego @MECFSSD]

@BatemanHorne Online Support Groups for people with ME/CFS & Long COVID 1:00PM MDT:
6/2: Coping with Anxiety Amidst Chronic Disease https://t.co/XaSS9fsn76
6/16: Facing Invalidation & Discrimination https://t.co/oVbNuVk4G4

[ME/CFS San Diego @MECFSSD]

@polybioRF Spring 2026 symposium: now available in a recording! Presentations by researcher: https://t.co/yyK8AMJ6LH Full recording: https://t.co/m0WMCoCApp

[ME/CFS San Diego @MECFSSD]

@BatemanHorne "Coffee" with a Clinician: PEM Part 4. Learn pacing, energy conservation, symptom tracking, and PEM management strategies for ME/CFS & Long COVID. 6/10, 10am MDT. Free. https://t.co/tZTEtJk029

[ME/CFS San Diego @MECFSSD]

FYI: California’s AB 144 requires California-regulated health plans, including Medi-Cal managed care, to continue covering COVID-19 vaccines (CVS didn't know - it is covered!) https://t.co/B9ThIVQOc2

[ME/CFS San Diego @MECFSSD]

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: https://t.co/4W1WYHt7wP (website & PDF)