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

Joined July 2020

97Following

250Followers

Pinned

ME/CFS San Diego@MECFSSD · Jul 10

Nature: study finds ME/CFS alters brain chemistry & metabolism, especially after exercise triggers post-exertional malaise. Changes in energy use, cell repair, folate, & brain lipids help explain symptom worsening. Read more: nature.com/articles/s4159…

MECFSSD's tweet card. Scientific Reports - Cerebrospinal fluid metabolomics, lipidomics and serine pathway dysfunction in myalgic encephalomyelitis/chronic fatigue syndroome (ME/CFS)

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ME/CFS San Diego@MECFSSD · Jul 26

New preprint from Ian Lipkin’s team: ME/CFS patients have a heightened immune response to exercise. The study reveals shifts in complement proteins & carnitines, offering insights into how immune & metabolic dysfunction may drive post-exertional malaise. medrxiv.org/content/10.110…

MECFSSD's tweet image. New preprint from Ian Lipkin’s team: ME/CFS patients have a heightened immune response to exercise. The study reveals shifts in complement proteins &amp; carnitines, offering insights into how immune &amp; metabolic dysfunction may drive post-exertional malaise. medrxiv.org/content/10.110…

ME/CFS San Diego@MECFSSD · Jul 25

New study tests IV saline in ME/CFS with dysautonomia. Saline, often a placebo in trials, showed some symptom relief but no objective improvements. Important to know saline’s effects to interpret drug trial results. Full study: frontiersin.org/journals/neuro…

MECFSSD's tweet card. PurposeMyalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating condition with no single, uniformly effective pharmacologic therapy. Dys...

ME/CFS San Diego@MECFSSD · Jul 25

Work requirements could jeopardize coverage for U.S. ME/CFS Medicaid patients: 75% can't work, 25% are homebound. Exemptions require complex paperwork. Learn more: investopedia.com/what-medicaid-… Medicaid Program Names: mecfssandiego.com/mecfs-resource…

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ME/CFS San Diego@MECFSSD · Jul 24

Register now for the July 31 webinar at 12 PM PT / 3 PM ET hosted by Solve M.E., featuring Dr. Akiko Iwasaki discussing her study, “Probing Functional Autoantibodies in Patients with ME/CFS.” 👉 ow.ly/eVNv50VReaH

MECFSSD's tweet image. Register now for the July 31 webinar at 12 PM PT / 3 PM ET hosted by Solve M.E., featuring Dr. Akiko Iwasaki discussing her study, “Probing Functional Autoantibodies in Patients with ME/CFS.”
👉 ow.ly/eVNv50VReaH

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ME/CFS San Diego@MECFSSD · Jul 22

Whitney Dafoe’s powerful new post is a call to awareness, action, and compassion for people living—and dying—with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 📝 Read: whitneydafoe.com/mecfs/?post=to… 🎧 Audio version also available: whitneydafoe.com/mecfs/audio/25…

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ME/CFS San Diego@MECFSSD · Jul 22

🎶 On Aug 2, soul & funk band Odyssey plays Key West Bournemouth to raise funds for the Ramsay Research Fund supporting ME research. Organized by Steve Heald, who has lived with ME for 38 years. More info: bournemouthecho.co.uk/news/25306664.…

MECFSSD's tweet image. 🎶 On Aug 2, soul &amp; funk band Odyssey plays Key West Bournemouth to raise funds for the Ramsay Research Fund supporting ME research. Organized by Steve Heald, who has lived with ME for 38 years. More info: bournemouthecho.co.uk/news/25306664.…

ME/CFS San Diego@MECFSSD · Jul 22

In the Netherlands, the Central Appeals Tribunal (CRvB) ruled that the UWV benefits agency was wrong to tell several ME patients they could work much of the week or full-time. Read more: nos.nl/artikel/2575416

MECFSSD's tweet card. Het UWV heeft bij haar beoordeling voor een arbeidsongeschiktheidsverzekering te weinig rekening gehouden met de gevolgen van de ziekte ME, oordeelt de Centrale Raad van Beroep.

ME/CFS San Diego@MECFSSD · Jul 22

Webinar Tomorrow! 🚨 Join solveME on July 22 @ 3PM PT / 6PM ET for a deep dive into the ADDRESS-LC trial studying bezisterim’s impact on brain fog & fatigue in Long Covid. Hear from experts & learn how to participate! 🔗 Sign up: ow.ly/lhSa50WiKu0

ME/CFS San Diego@MECFSSD · Jul 16

Long COVID clinics closing in the UK & US means fewer specialists trained in post-viral illnesses like ME/CFS, less access to care, & greater strain on general doctors. This risks leaving many patients without the support and treatment they urgently need. reddit.com/r/mecfsSD/comm…

MECFSSD's tweet image. Long COVID clinics closing in the UK &amp; US means fewer specialists trained in post-viral illnesses like ME/CFS, less access to care, &amp; greater strain on general doctors. This risks leaving many patients without the support and treatment they urgently need.
reddit.com/r/mecfsSD/comm…

ME/CFS San Diego@MECFSSD · Jul 15

Calling all artists! Submit your work for ME Advocates Ireland’s online art exhibition for Severe ME Day (Aug 8). Show your experience or support for the ME/CFS community. Deadline July 25. Details & submissions: [email protected]

MECFSSD's tweet image. Calling all artists! Submit your work for ME Advocates Ireland’s online art exhibition for Severe ME Day (Aug 8). Show your experience or support for the ME/CFS community. Deadline July 25. Details &amp; submissions: info@meadvocatesireland.com

ME/CFS San Diego@MECFSSD · Jul 11

New survey from a Eastern Washington U Researcher: Share your housing challenges if you have chemical sensitivities (MCS/TILT). Just 26 quick questions to help identify housing needs & support safer, accessible solutions. 📝 Take it here: surveymonkey.com/r/housingmcs

MECFSSD's tweet card. Take this survey powered by surveymonkey.com. Create your own surveys for free.

ME/CFS San Diego@MECFSSD · Jul 10

New ME/CFS biomarker: SMPDL3B 🧬 A large study finds SMPDL3B, a gene involved in immune-regulating lipid metabolism, is altered in ME/CFS patients (Canada & Norway). Blood-based, it could aid diagnosis & treatment. More research needed, but promising. 📄 …nslational-medicine.biomedcentral.com/articles/10.11…

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ME/CFS San Diego@MECFSSD · Jul 9

The CureME team at the ME/CFS Biobank is hosting a webinar on July 21 at 2 pm BST. Dr. Luis Nacul will discuss a clinical trial of naltrexone for ME/CFS. A recording will be available after the event. Register here: tinyurl.com/9857pbue

MECFSSD's tweet image. The CureME team at the ME/CFS Biobank is hosting a webinar on July 21 at 2 pm BST. Dr. Luis Nacul will discuss a clinical trial of naltrexone for ME/CFS. A recording will be available after the event. Register here: tinyurl.com/9857pbue

ME/CFS San Diego@MECFSSD · Jul 9

New review preprint links T cell exhaustion to ME/CFS & Long COVID. Chronic immune dysfunction, marked by exhausted T cells, viral persistence & neuroimmune disruption, may drive symptoms like fatigue & brain fog. Read: qeios.com/read/YDRIR2

MECFSSD's tweet card. This literature review summarizes recent studies on T cell exhaustion and its role in post-acute infection syndromes (PAIS), including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and...

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ME/CFS San Diego@MECFSSD · Jul 9

Just published (preprint posted earlier) in PNAS: @OpenMedF patient-led study on ME/CFS & Long COVID treatments! 🔬 3,900+ patients 💊 150+ treatments analyzed 📊 Real-world outcomes from the TREATME survey 🧠 Data-driven insights for future research 🔗 pnas.org/doi/abs/10.107…

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ME/CFS San Diego@MECFSSD · Jul 9

Updated ME/CFS & School resources from @MECFSSD K–12: mecfssandiego.com/mecfs-and-scho… College+: mecfssandiego.com/mecfs-and-scho… More: mecfssandiego.com/mecfs-and-scho…

MECFSSD's tweet image. Updated ME/CFS &amp; School resources from @MECFSSD
K–12: mecfssandiego.com/mecfs-and-scho…
College+: mecfssandiego.com/mecfs-and-scho…
More: mecfssandiego.com/mecfs-and-scho…

ME/CFS San Diego@MECFSSD · Jul 7

Join us July 31 @ 12 PM PT / 3 PM ET for a webinar with Dr. Akiko Iwasaki on her ME/CFS study revealing functional autoantibodies that may drive symptoms like fatigue & brain fog. 🔗 Register: ow.ly/eVNv50VReaH 📖 Study: pubmed.ncbi.nlm.nih.gov/40373264/

MECFSSD's tweet image. Join us July 31 @ 12 PM PT / 3 PM ET for a webinar with Dr. Akiko Iwasaki on her ME/CFS study revealing functional autoantibodies that may drive symptoms like fatigue &amp; brain fog.
🔗 Register: ow.ly/eVNv50VReaH
📖 Study: pubmed.ncbi.nlm.nih.gov/40373264/

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ME/CFS San Diego@MECFSSD · Jul 7

New study shows distinct brain white matter differences in ME/CFS subtypes! 🔹 Post-infectious ME/CFS: higher axial diffusivity linked to worse physical health 🔸 Gradual onset ME/CFS: lower axial diffusivity linked to worse mental health nature.com/articles/s4159…

MECFSSD's tweet card. Scientific Reports - Distinct white matter alteration patterns in post-infectious and gradual onset chronic fatigue syndrome revealed by diffusion MRI

ME/CFS San Diego@MECFSSD · Jul 7

New antibody (BiTS) calms harmful immune cells without broad immunosuppression. Tested in mice with type 1 diabetes, autoimmune hepatitis & MS. May help ME/CFS patients with immune overactivity and inflammation. Read more: medicalxpress.com/news/2025-06-p…

MECFSSD's tweet card. An engineered protein turns off the kind of immune cells most likely to damage tissue as part of type-1 diabetes, hepatitis, multiple sclerosis, shows a new study in mice.