ME/CFS San Diego

@Support I posted 6 times today - only 4 show up in my profile (and I can only see those 4 on my personal account too) - a few days ago I posted 5 only 2 showed up in my profile. I can search for them and see them.

@Support Technical issue: @MECFSSD public profile Posts tab is not displaying all original top-level posts. The posts are public& accessible by direct URL/search, but are missing from the profile timeline even when logged into the account itself. This has been ongoing.

A large randomized placebo-controlled trial tested Temelimab, a drug targeting a retrovirus-related protein, in LC patients with evidence of HERV-W ENV. It found no benefit for fatigue, cognitive outcomes, function, or biomarkers. sciencedirect.com/science/articl…

The CICERO trial doesn't show cognitive therapy improves LC brain fog in IACC patients. 73.1% had moderate+ depression symptoms, which can include cognitive symptoms, while only 5.1% met PEM criteria. Main improvement self-reported, not objective testing. jamanetwork.com/journals/jaman…

Articles suggesting all LC brain fog is caused by dopamine dysfunction or can be treated with bupropion or Auvelity overstate the original study: Only LC patients with prominent neuropsychiatric symptoms were eligible, and medications were not tested. thelancet.com/journals/ebiom…

@MEActNet 2026 Severe ME Artists Project is now open for submissions. People with severe ME can submit writing, photography, drawing, or other artwork, including work created before becoming ill. The project will be featured for Severe ME Day on Aug. 8. lnkd.in/gaU2xQGN

@WIRED Long COVID article Open Letters from ME/CFS San Diego: mecfssandiego.com/mecfs-advocacy… ) 6/4, 6/8, 6/19 - this is why we supported and signed onto the ethics complaint!

@remissionbiome Renegade Research July Newsletter: ckarchive.com/b/qdu8h7h49kwl…

If you took part in the 2023-24 Vyvgart (efgartigimod) LC trial, Mt. Sinai is asking participants to provide a blood sample. A free at-home lab kit is available by emailing coreresearch@mountsinai.org. The samples will be tested against a newly identified autoimmune biomarker.

@MEAssociation Update: Blue Badge information pack: meassociation.org.uk/bbai Template application letter: meassociation.org.uk/tlbb

Scott Hugo, 25+ patient advocates & @MEActNet 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: mecfssandiego.com/mecfs-advocacy…

@DecodeMEstudy Symptom Clustering Study: 19,019 participants showed two overlapping groups differing mainly in symptom burden, not distinct ME/CFS subtypes. Limitations: questionnaire data, self-selection bias, limited diversity. medrxiv.org/content/10.648…

@RedefiningMECFS scientists and @PlzSolveCFS webinar: on Tuesday, July 14, 6pm ET. Hear Phase II rapamycin trial updates, our upcoming publication, and new PEM findings. Submit questions when you register: ow.ly/TTSZ50Zg3Cy

Harvard Petri-Flom Center Article: For ME/CFS patients, there is a stark gap between the legal right to request a masked provider & lived reality. This article explores the systemic friction that makes accessing safe care a consistent struggle: petrieflom.law.harvard.edu/2023/07/20/a-p…

Matthias Wielscher, Medical University of Vienna, received €450,000 @weandmecfs Award: will use the @DecodeMEstudy dataset to investigate biologically meaningful subgroups and genetic mechanisms of ME/CFS. meduniwien.ac.at/web/en/about-u…

@BatemanHorne June Recaps: Support Groups: 6/2 batemanhornecenter.org/wp-content/upl… 6/16 batemanhornecenter.org/wp-content/upl… "Coffee" with a Clinician 6/10: PEM Part 4: Recording youtube.com/watch?v=YgUST9… Slides batemanhornecenter.org/wp-content/upl… Q&A Follow-Up batemanhornecenter.org/wp-content/upl…

Proposed OMB changes could burden scientific and medical research, & advocacy is needed now: Please submit comments by July 13 to protect biomedical research. Bipartisan congressional pushback against the changes shows our voices are making a difference. federalregister.gov/documents/2026…

Two important perspectives on the state of ME/CFS research funding: NIH funding challenges and uncertainty are affecting capacity just as Europe is building momentum with major new investments. ME/CFS Science: facebook.com/permalink.php?… Health Rising: healthrising.org/blog/2026/06/0…

NYTimes Gift Article nytimes.com/2026/07/06/us/… U.S. Federal research funding uncertainty is affecting the next generation of scientists. ME/CFS needs new researchers to help build on promising leads.

@EmergeAus Count ME Advocacy Success: For the first time since 2003, ME/CFS will be recognized as a separate condition in Australia’s Burden of Disease Study. natlawreview.com/press-releases…