ME/CFS San Diego are patients and/or caregivers sharing information, support for each other, and education about Myalgic Encephalitis/ Chronic Fatigue Syndrome
Joined July 2020
- Tweets 1,261
- Following 103
- Followers 334
- Likes 569
200 Photos and videos
Jun 12
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. mecfssandiego.com/mecfs-reso…
ALT A patient in bed on a video call with a healthcare professional.
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Jun 11
FDA extended deadline 7/11 for public input on drug repurposing & added a workshop (8/5): FDA needs priorities for disease areas & drug candidates feedback federalregister.gov/document… workshop: reaganudall.org/news-and-eve… Asks: ME/CFS focus & suggest FDA's CURE ID for off-label use data
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Jun 11
"What is ME/CFS Like" Book by WIMEL Writers with Bateman Horne Center: wimel2.wordpress.com/ <- What is WIMEL/Pillow Writers wimel2.wordpress.com/2026/03… <- about the book amazon.com/What-Myalgic-Ence… <-buy the book!!!
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Jun 11
Infections can trigger Chronic Illness Article: No surprise to most in the ME/CFS community but Long COVID has pushed that idea into the mainstream, prompting researchers to reconsider whether many infections can have lasting health consequences.san.com/cc/can-every-infecti…
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Jun 11
LAST CALL 6/11 12:00 PM PT ME/CFS San Diego Expert FREE VIRTUAL Event (for the patient/caregiver community) w/ Sallie Rediske, MPT: Accessing PT, OT, SLP & functional care in ME/CFS.
Event recording will be shared at youtube.com/@MECFSSD
Register: us06web.zoom.us/meeting/regi…
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Jun 9
June Newsletters (Only web-accessible ones):
@AmmesAdmin : berrima.eomail5.com/web-vers…
@MassMECFS Newsletter: massmecfs.org/resources/news…
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Jun 9
Ohio lawmakers removed a controversial Medicaid change: that would’ve blocked family members as paid caregivers, after warnings it could worsen Ohio’s caregiver shortage & push disabled and elderly residents into nursing homes. statenews.org/government-pol…
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Jun 9
Sublingual Cyclobenzaprine Study: pmc.ncbi.nlm.nih.gov/article… targeting sleep reduces fibromyalgia pain & may help a subset of ME/CFS Patients. Dr. Jarred Younger’s neuroinflammation video youtube.com/watch?v=U-GkHJe_… stabilizing sleep architecture helps calm central hyperexcitability
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Jun 9
Sallie Rediske, MPT ME/CFS San Diego Expert VIRTUAL Event: Accessing PT, OT, SLP & functional care in ME/CFS. Please Submit Questions in Advance: PM, comment, or info@mecfssandiego.com.
Register: us06web.zoom.us/meeting/regi…
Past Events: youtube.com/@MECFSSD
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Jun 9
Interview with @ngklimas : michaela.substack.com/p/the-… “Her perspective is clear: ME/CFS is not a ‘mysterious exhaustion,’ but a complex neuroimmune disease — and one that can be treated if its underlying mechanisms are understood.” us4.forward-to-friend.com/fo… INIM Newsletter sign-up
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Jun 8
We sent an open letter to @WIRED 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. mecfssandiego.com/mecfs-advo…
ALT 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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Jun 6
ME/CFS San Diego Expert VIRTUAL Event w/ Sallie Rediske, MPT: Accessing PT, OT, SLP & functional care in ME/CFS. Submit Questions in advance: PM, comment, or info@mecfssandiego.com.
Event recording will be shared at youtube.com/@MECFSSD
Register: us06web.zoom.us/meeting/regi…
ALT 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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Jun 5
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. form.jotform.com/26146659172…
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Jun 5
Yale-Mount Sinai Cell study on Long COVID: cell.com/cell/abstract/S0092… found autoantibodies in some patients; IgG induced pain, fatigue-like behavior, and neuro changes in mice, suggesting they may contribute to symptoms. healthrising.org/blog/2026/0…
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Jun 5
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. mdpi.com/1422-0067/27/10/443…
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Jun 2
@MEActNet is collecting brief thank-you notes for Dr. Haridopolos to support advocacy efforts. Please watch her Millions Missing speech: youtube.com/watch?v=DBDsRAhi… and email your note ASAP (by 6/3 if possible) to advocacy@meaction.net
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Jun 2
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!!!
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Jun 2
Bookshare bookshare.org/global: 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.
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Jun 2
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. us06web.zoom.us/webinar/regi…
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Jun 2
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. cms.gov/newsroom/fact-sheets…
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