Dazzle Advocacy

01/17/2024

Fresh research and clinical anecdotes have given experts a much clearer picture of which patients are most likely to develop long COVID.

01/17/2024

Clinicians should test for hypermobile Ehlers-Danlos syndrome if patients have persistent symptoms after COVID-19, a small study suggests.

01/13/2024

Chronic Pain Partners is excited to speak with David Jameson Harris, a former McKinsey consultant, about his latest project, a new Ehlers-Danlos syndrome clinic, hopefully offering access to expert EDS care in several states starting in February 2024. CPP's Karina Sturm spoke with David Jameson Harr...

02/28/2023

According to NIH, 1 in 10 Americans has a rare disease/condition. It's probably more than 1 in 10 because not all get detected/diagnosed and/or reported to NIH. Our data/metrics-driven health care system fails to educate and empower health care professionals to practice the art of medicine rather than data-, algorithm-, insurance-driven health care to detect & eradicate disease rather than promote health. All too often, it fails to provide care for people who live w/ rare conditions because most can't reliably get paid by Medicare, Medicaid and/or private health insurance companies due to audits of medical records. This could be changed via a Center for Medicare and Medicaid Services (CMS) Federal regulation exempting documentation specifically for rare conditions from audits and clawbacks.

12/27/2022

The reason the medical profession isn't paying more attention is because the US health care market has financial disincentives to providing care for people who live w/ "rare" conditions for which there isn't "evidenced-based" treatments. Audits will claw back the $ for patient encounters for documentation the auditors don't recognize as fitting the templates they've been given to use.

Hypermobile Ehlers-Danlos syndrome is a connective tissue disorder. When Sarah Lazarus' daughter was diagnosed with it, she discovered that the majority of cases are going undiagnosed for decades.

12/25/2022

Action Items:
1) If you are able, 𝙥𝙡𝙖𝙣 𝙖𝙝𝙚𝙖𝙙 for ways to obtain Tamiflu and Paxlovid or other COVID treatments.
2) 𝙎𝙞𝙜𝙣 𝙩𝙝𝙞𝙨 𝙥𝙚𝙩𝙞𝙩𝙞𝙤𝙣 (link's in this blog post) to demand that the National Institutes of Health (NIH) block plans to continue clinical trials, called RECOVER, that test debunked, harmful treatments for Long COVID, including exercise and cognitive behavioral therapy....(E)xercise is likely to do more harm than good for those who have Long COVID. If you or someone you know has Long COVID, it may also help to 𝙚𝙢𝙖𝙞𝙡 (link's in this blog post) NIH and RECOVER researchers personally.

Week of December 25, 2022

03/23/2022

03/22/2022

"I gained back control and improved my quality of my life."

03/19/2022

Health and financial security • What's Buzzing Biden administration bent on privatizing traditional Medicare March 9, 2022by Diane ArcherAdd Comment Jack Dorsey Written by Diane Archer There appears to be little light any more between corporate health care and government health care or even betwee...

02/28/2022

A perfect story for this year's

Writer Meghan O'Rourke says long COVID and other chronic illnesses put a heavy burden on patients, who have to "testify to the reality of their own illness." Her new book is The Invisible Kingdom.