@MPrulesok1 @CortJohnson @OpenMedF The history and use of the ME/CFS names is complicated:
mecfssandiego.com/mecfs-resource…
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ME/CFS San Diego
1.2K posts
ME/CFS San Diego
@MECFSSD
ME/CFS San Diego are patients and/or caregivers sharing information, support for each other, and education about Myalgic Encephalitis/ Chronic Fatigue Syndrome
San Diego, CA Katılım Temmuz 2020
102 Takip Edilen331 Takipçiler
@MECFSSD @CortJohnson @OpenMedF There's nothing much wrong with the immune system in pwME. CFS perhaps, but not ME.
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@CortJohnson @OpenMedF OMF-Funded Moreau Lab ME/CFS research links low membrane SMPDL3B & depleted sphingolipids/ceramides to immune dysfunction, PEM, kidney-related blood volume problems, & the renin-aldosterone paradox. OMF plans related med trials. healthrising.org/blog/2026/04/2…
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@MPrulesok1 @CortJohnson @OpenMedF Immune findings reported in pwME include reduced NK-cell cytotoxicity, cytokine differences, T-cell dysregulation/exhaustion, altered responses to exertion, autoantibodies in subsets, and neuroinflammatory findings.
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@dysclinic feedback: a trial meant to prove inflammation causes depression actually found a 31% remission rate in the IV saline placebo group. She argues saline isn't a true placebo: it boosts blood volume and brain perfusion to fix symptoms physically. x.com/dysclinic/stat…
S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic@dysclinic
Not surprising to some of us. :) Of interest is that 31% of patients in the IV saline group (so-called "placebo") met the remission criteria. This "placebo" also improved sadness and sleep! Why would placebo do that? It may not be "the mind does that" kind of effect. As I stated previously, saline is not a true placebo. IV saline improves cerebral perfusion, and, therefore, it's not surprising that it can have a positive effect on depressed mood and sleep disturbance when your cerebral perfusion is improved. onlinelibrary.wiley.com/doi/10.1002/mu…
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BMJ Rapid Response: Experts reject dangerous psychosomatic claims in BMJ, framing severe ME/CFS as a biological multi-system illness. PEM is a measurable reality, not a belief. Patients need biomedical science. bmj.com/content/389/bm…
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Prof Doug Kell’s June 17 Biochemical Society Free webinar: on fibrinaloid microclots in Long Covid and ME/CFS, highlighting groundbreaking research into chronic vascular and clotting mechanisms: register.gotowebinar.com/register/22648…
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@OpenMedF BioQuest testing: underway on 1000+ samples. Nightingale runs NMR metabolomics & Olink proteomics. OMF Montreal checks cytokines, haptoglobin phenotypes, SMPDL3B, & markers, while OMF Uppsala adds mass spec proteomics & metabolomics.
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Report advertisements for dangerous or scam treatments in the U.S.: reportfraud.ftc.gov/form/ Report dangerous or scam treatments that harmed you medically or financially:
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New Watton & @BhupeshPrusty Article: link.springer.com/article/10.118… New ME/CFS model maps state-dependent cell failure: abortive viral triggers, discordant fibronectin immune-complex defects, & mitochondrial locking unmask severe multi-system collapse under physical or metabolic stress.
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@PlzSolveCFS @DecodeMEstudy & @actionforme free webinar 6/10 11AM PT: Catalyst Award study implications in the search for ME/CFS & LC biomarkers & subtypes ow.ly/mOKJ50YZ86t
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French Sleep study (matched healthy participants, validated scales, & objective sleep monitoring): 38 ME/CFS patients show they spend more time in bed and have lower sleep efficiency with high night-to-night variability, despite regular bedtimes. link.springer.com/article/10.100…
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@PolyBio Free Symposium 5/22 11am–5pm ET: Key research into neuroimmune mechanisms in infection-associated chronic illness:from a novel retinal biomarker for cognitive dysfunction to whole-body T cell activation imaging using PET.
us02web.zoom.us/webinar/regist…
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National Institute on Minority Health and Health Disparities (NIMHD) webinar 6/22, 1–2 PM ET: Updates on health disparities research and scientific priorities, followed by Q&A. forms.office.com/pages/response…
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@PlzSolveCFS , @DecodeMEstudy , & @actionforme free webinar 6/10 11AM PT: Catalyst Award study implications in the search for ME/CFS & LC biomarkers & subtypes ow.ly/mOKJ50YZ86t
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UK @MEAssociation News: New SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms) code now recognizes "very severe" ME/CFS in the UK, filling a key gap in clinical records. meassociation.org.uk/9fcp
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DC ME/CFS Advocacy opportunity (in-person): National Institute of Nursing Research (NINR) listening session on May 27, 9:30–11 AM ET in DC to shape the future of nursing science. docs.google.com/forms/d/e/1FAI…
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Centers for Medicare & Medicaid Services Info: Medicare is sending new ID cards to 1.3M beneficiaries whose info was compromised. Benefits stay the same, but watch for fraud. Don’t share numbers with callers. More info: prnewswire.com/news-releases/…
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CIDRAP Early Antiviral May Reduce LC risk: cidrap.umn.edu/covid-19/early… Early COVID antiviral treatment in mostly mild Omicron cases was linked to ~14% lower LC risk and faster return to normal health/function though cause & effect haven't be confirmed
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edition.pagesuite.com/popovers/dynam… explores how women are using AI tools alongside medical care to research symptoms, diagnoses and treatment options when traditional care falls short. (I participated in it)
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thesicktimes.org/2026/05/14/bre… German researchers Carmen Scheibenbogen & Klaus Wirth propose an ME/CFS theory linking impaired blood flow, ion imbalance & mitochondrial damage. Their experimental drug aims to interrupt the cycle driving PEM; clinical trials & funding are still needed.
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