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#patientadvocacy — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #patientadvocacy, aggregated by home.social.

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  1. Let’s hope this proposed ‘unifying theory’ of chronic fatigue leads to new avenues for diagnosis and treatment. 🙏

    TL;DR:
    Researchers at the University of East Anglia and Oxford BioDynamics, found that long Covid, ME/CFS, PTSD, rheumatoid arthritis, and multiple sclerosis may affect overlapping biological networks involved in immune function, metabolism, cellular energy, and stress responses. The study used existing genetic data and 3D genome analysis rather than collecting new patient samples.

    This shared “unifying theory” could lead to common diagnostic blood tests and therapies that target the underlying fatigue pathways across all these conditions.
    The findings could eventually support better blood tests and treatments, but the proposed biological connections—including the potential role of genes such as LAG3, still need to be validated through further research.

    This is just the very beginning, but it is the beginning.

    sciencedaily.com/releases/2026

    #ChronicFatigue #MECFS #LongCovid #PTSD #AutoimmuneDiseases #MedicalResearch #HealthInnovation #ScienceBreakthrough #MedicalBreakthrough #UnifyingTheory #BiologicalResearch #ImmuneDysfunction #Metabolism #PatientAdvocacy #MedicalScience #HealthInnovation #CellularEnergy #EnergyProduction #ResearchMatters #ME/CFS #AutoimmuneResearch #Mitochondria #ImmuneHealth #PrecisionMedicine #NewTherapies #ScienceBreakthrough

  2. Waterford family fights for treatment, awareness for daughter with rare genetic disorder

    WATERFORD, Mich. – Experts say only about 150 people in the world are living with an ultra-rare genetic…
    #NewsBeep #News #Healthcare #CA #CACNA1EAwarenessDay #Canada #Health #insurancecoveragefight #Michiganmedicalcare #patientadvocacy #raregeneticmutation #waterford
    newsbeep.com/ca/887890/

  3. My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
    koehlerbooks.com/book/living-c

    Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  4. My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
    koehlerbooks.com/book/living-c

    Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  5. My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
    koehlerbooks.com/book/living-c

    Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  6. My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
    koehlerbooks.com/book/living-c

    Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  7. My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
    koehlerbooks.com/book/living-c

    Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  8. My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
    koehlerbooks.com/book/living-c

    Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  9. My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
    koehlerbooks.com/book/living-c

    Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  10. My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
    koehlerbooks.com/book/living-c

    Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  11. My Book, 'Living Chronic: Conversations That Changed Me, Lessons That Saved Me', is Officially Available | By Brandy Schantz | Courtesy of the PWD Media Co-op
    koehlerbooks.com/book/living-c

    Born from a severe reaction to a Crohn’s medication and 19 months searching for answers: interruption, self-advocacy, and rebuilding.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  12. 25 years on the floor. One honest conversation about elder care. A nurse tells us what neglect actually looks like, why ageism costs lives, and the 1 question every family should ask before choosing care.
    #ElderCare #PatientAdvocacy #SVEA #ElderAbuseAwareness #Nurses #Healthcare #Aging #Caregivers

    silentvoiceselderadvocacy.org/

  13. Glioblastoma: My Mom-In-Law’s Journey With A Brain Tumor

    My mother-in-law Karla told me she had a brain tumor before she told my wife Michelle. Karla and…
    #NewsBeep #News #Healthcare #AU #Australia #braincancer #BrainTumor #Cancer #glioblastoma #Health #patientadvocacy
    newsbeep.com/au/836309/

  14. Glioblastoma: My Mom-In-Law’s Journey With A Brain Tumor

    My mother-in-law Karla told me she had a brain tumor before she told my wife Michelle. Karla and…
    #NewsBeep #News #Healthcare #braincancer #BrainTumor #CA #Canada #cancer #glioblastoma #Health #HealthCare #patientadvocacy
    newsbeep.com/ca/838820/

  15. You can’t be helped if you refuse to show anyone where it hurts. I used to smile and lie to my doctor about my hallucinations just to avoid medication. Take the mask off. Transparency is the only path to stability! 🎭 #PatientAdvocacy #BipolarRecovery #EndTheStigma

    SPEAKINGBIPOLAR.COM/CLUB

  16. Under Trump, more federal support has gone to anti-abortion Christian centers — many of which tell patients they can safely 'rule out' dangerous ectopic pregnancies. #reproductivehealth #ectopicpregnancy #patientadvocacy

    npr.org/2026/06/24/nx-s1-58607

    Posted into FLIPBOARD EXCHANGE FEED 🗞️ @flipboard-exchange-feed-Econopass

  17. Living Chronic: Conversations That Changed Me, Lessons That Saved Me, Is Now Available For Pre-Order | By Brandy Schantz | Courtesy of the PWD Media Co-op
    barnesandnoble.com/w/living-ch

    Born from her own journey with Crohn's, lupus, and dysautonomia: a book about resilience, self-advocacy, disability, and hope.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  18. Living Chronic: Conversations That Changed Me, Lessons That Saved Me, Is Now Available For Pre-Order | By Brandy Schantz | Courtesy of the PWD Media Co-op
    barnesandnoble.com/w/living-ch

    Born from her own journey with Crohn's, lupus, and dysautonomia: a book about resilience, self-advocacy, disability, and hope.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  19. Living Chronic: Conversations That Changed Me, Lessons That Saved Me, Is Now Available For Pre-Order | By Brandy Schantz | Courtesy of the PWD Media Co-op
    barnesandnoble.com/w/living-ch

    Born from her own journey with Crohn's, lupus, and dysautonomia: a book about resilience, self-advocacy, disability, and hope.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  20. Living Chronic: Conversations That Changed Me, Lessons That Saved Me, Is Now Available For Pre-Order | By Brandy Schantz | Courtesy of the PWD Media Co-op
    barnesandnoble.com/w/living-ch

    Born from her own journey with Crohn's, lupus, and dysautonomia: a book about resilience, self-advocacy, disability, and hope.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  21. Living Chronic: Conversations That Changed Me, Lessons That Saved Me, Is Now Available For Pre-Order | By Brandy Schantz | Courtesy of the PWD Media Co-op
    barnesandnoble.com/w/living-ch

    Born from her own journey with Crohn's, lupus, and dysautonomia: a book about resilience, self-advocacy, disability, and hope.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  22. Living Chronic: Conversations That Changed Me, Lessons That Saved Me, Is Now Available For Pre-Order | By Brandy Schantz | Courtesy of the PWD Media Co-op
    barnesandnoble.com/w/living-ch

    Born from her own journey with Crohn's, lupus, and dysautonomia: a book about resilience, self-advocacy, disability, and hope.

    #LivingChronic #BookLaunch #ChronicIllness #DisabilityInclusion #PatientAdvocacy #CrohnsDisease #Dysautonomia #Leadership #Resilience #Healthcare #DisabilityEmployment

  23. The Anxiety of Not Knowing
    Delayed care without insurance meant sitting in fear and uncertainty. The waiting felt heavier than the diagnosis. Access to coverage made action possible. #HealthcareAccess #HealthInsurance #PatientAdvocacy #WomensHealth #HealthAwareness

  24. Small Signs Matter
    A pea-sized lump at 28 led to an important mammogram. It wasn’t pleasant—but it was necessary. Age doesn’t make you immune. Stay vigilant. #BreastHealth #EarlyDetection #WomensHealth #PatientAdvocacy #PreventiveHealth

  25. 💙 Are you a caregiver feeling overwhelmed and unsupported?

    You're not alone — and AI-powered healthcare advisory is here to help.

    RAVCARE was built with caregivers in mind, providing intelligent, real-time guidance so you can:

    AI doesn't replace the human touch in caregiving. It empowers it. 💪

    ravcare.com/how-ai-is-revoluti

    #CaregiverSupport #RAVCARE #AIinHealthcare #ChronicCareManagement #HealthcareAI #FamilyCaregiving #DigitalHealth #PatientAdvocacy #HealthTech #CaregiverBurnout

  26. #ShieldAlert: #AndSteiner, GenderDiverse #HumanRightsActivist, targeted for #PatientAdvocacy at #LemuelShattuck.

    Urgent Update: #Whistleblower And Steiner Still in Danger Despite Recent Concessions

    September 22, 2025: "#MindFreedomInternational (#MFI) is pleased to report that, in response to our previous Shield Alert update, Lemuel Shattuck Hospital has allowed And Steiner to see a covering provider of their choice and assured that And’s requests are being taken seriously. However, MFI remains concerned about And’s safety and well-being despite these concessions.

    "As a reminder, And is a #Massachusetts (MA) Department of Mental Health (DMH) patient at Lemuel Shattuck Hospital and whistleblower alleging criminal misconduct and abuse within the Massachusetts #DMH system, and has faced a pattern of retaliation including illegal #ForcedTransfer, assault, and harassment and denial of #DueProcess. A staff member has also warned that DMH plans to continue this targeting and harassment."

    See link below to learn what you can do.

    "Main talking points:

    - And Steiner is a whistleblower who has reported alleged criminal misconduct and abuse within the Massachusetts Department of Mental Health system.
    - And is currently under the care of those they are whistleblowing about.
    - A staff member has warned an MFI volunteer of DMH’s intentions to target and harass And.
    - And has faced retaliation, including illegal forced transfer, assault, verbal and sexual harassment, and denial of due process, including recent targeted discrimination and abuse by staff.
    - Ivy McCall, a friend of And’s with a masters degree in social work, who has attended many of And’s Team Meetings, has come forward saying she believes DMH is targeting and abusing And and that And is not safe.
    - All Massachusetts State entities have refused to intervene despite an easily provable #patternOfAbuse and targeting by DMH towards And for at least 3 years.
    - Many staff members have filed complaints regarding And’s care.
    - #MindFreedom and many advocates and you remain concerned that this pattern will continue without intervention."

    mindfreedom.org/front-page/and

    #LemuelShattuck #Queer #BIPOC #Transgender #LGBTQ #PatientAbuse #LetterWriting #Psychiatry #Fascism #Massachusetts #MassDMH
    #HumanRightsAbuses

  27. I just contacted my legislators about the Medical Foods and Formulas Access Act.

    I use prescribed oral medical nutrition specifically to prevent needing a feeding tube. Right now the system will often cover the tube and hospital care but not the treatment that helps avoid it in the first place.

    For many disabled and chronically ill patients this is the difference between staying stable and medical decline, especially for people on Medicaid or fixed incomes.

    If you are in the US and this applies to you, the Rare Disease Action Network has a quick form you can use to contact your representatives.

    rarediseases.quorum.us/campaig

    #MedicalFoods #RareDisease #DisabilityAdvocacy #HealthcareAccess #ChronicIllness #Medicaid #PatientAdvocacy

  28. 🚨 Starting soon! 🚨
    🔥 Our Fireside Chat with patient advocate Peter Kapitein gets underway at 10:30! Hear about Peter's life's mission to connect patients, researchers & clinicians to further research and care. #PatientsInResearch #IHITransformingHealth #PatientAdvocacy #NothingForUsWithoutUs

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