Top Tweets for #NOTHINGABOUTUSWITHOUTUS

The Long COVID research and conference ecosystem systematically erases the sickest patients. Those who are housebound, bedbound, too ill to travel and financially devastated by chronic illness are unable to participate. Excluded from Research (Survivor Bias) 👉Inaccessible Protocols: Most clinical studies require traveling to academic centers, standing, or enduring exertional testing that severely ill patients cannot do without severe crashes. 👉Missing Bio-Samples: Because home-based sample collection and remote diagnostic visits are rarely funded, the most severe biological markers remain completely unmapped. Locked Out of Live Conferences (Zero Accessibility) 👉Physical & Environmental Barriers: Medical summits rarely offer meaningful hybrid access, energy-pacing accommodations, or transparent clean air standards, forcing vulnerable patients to choose between advocating for their health and risking reinfection. 👉Self-Serving Echo Chambers: Hosting in-person-only events creates a space where researchers discuss patient care without the actual patients present. Financial Gatekeeping & Paywalled Recordings 👉Monetizing Information: Forcing disabled patients to buy video recordings after the event adds insult to injury. Expecting a population that has lost their health, income, and quality of life to pay hundreds of dollars just to watch recorded lectures about their own condition is predatory and exploitative. 👉Denying Open Access: If conferences genuinely aimed to serve the patient community, recorded sessions would be freely accessible to those who were too sick to attend live. Science cannot solve LC while locking its most severely impacted population out of the room, out of studies, behind paywalls, and out of the data. 🧑‍⚕️Nursing Note: I have been repeatedly denied and ignored. I have real science based questions that never get answers. Who is representing me and hundreds of millions of other forgotten men women and children? Who is speaking for us? Nobody that I can see. #LongCovid #SevereLongCovid #AccessibilityInScience #PatientInclusion #MedicalEthics #OpenAccess #CleanAir #PaywallExclusion

THE BEST NEWS! 💕 The HSE has approved the reimbursement of Skyclarys for Irish patients living with Friedreich’s ataxia. The decision by the HSE's Senior Management Team followed a revised, substantially improved financial offer for the drug from pharmaceutical company Biogen. While Skyclarys is not a cure, advocates and clinical evidence indicate it can slow down disease progression by up to 55 per cent. Huge congratulations to the entire Friedreich’s ataxia community and all the tireless advocates whose dedicated campaigning helped make this life-changing result possible #Skyclarys #friedreichsataxia #HOPE https://t.co/z6OMDwVi4W