Surviving MyalgicE & AAG to tell the story, patient & advocate w/ a JD. Into MEdical, Social & Climate Justice & Arts. Human neutrino/ PwME = MEdical apolide/Gnarled pacer
MEssland Worldwide https://www.tandfonline.com/doi/pdf/10.2217/fmb-2022-0031
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Yesterday, the American College of Obstetricians & Gynecologists released a maternal immunization schedule.
They write that it's the first time they've ever released an "immunization schedule that differs from federal vaccine recommendations."
and policymakers, in practice PPIE is often superficial or omitted altogether. We share approaches as a patient-focused research group that embeds the lived experience in each aspect of the research process and has demonstrated the impact and benefits of being truly patient centred.
priority is expertise amplification, not workforce replacement.
“So now for the first time, ACOG has made the decision to formally release its own immunization schedule to provide and communicate clear evidence-based guidance and to address the growing vaccine misinformation that is circulating,” apnews.com/article/vacc...
The US ME aka #ME/CFS Funding Gap in 7 charts @crunchme.bsky.social
crunchme.org/reports/the-...
The US ME Funding Gap in 7 Charts
#ME/CFS
@crunchme.bsky.social Data InforMEd Advocacy for IACIs
Patient and public involvement and engagement in #LongCOVID research: embedding inclusion in research
This article highlights the importance of placing patient and public involvement and engagement (PPIE) at the centre of clinical and academic research. Despite widespread agreement among funders
Yet, AI will not fix dysfunctional systems by default; poorly designed implementation can shift burdens, erode confidence, and widen gaps in health-care quality, access, and clinician wellbeing. Practice must remain clinician-led, patient-centred, and grounded in shared decision making. The policy
More great & solid biomedical research from 🇦🇺
Disrupted Glymphatic Function and Its Relationship with Sleep and Cognitive Impairment in #ME/CFS Assessed via DTI-ALPS
Kiran Thapaliya
Sonya Marshall-Gradisnik
Maira Inderyas
Leighton Barnden
