PLRC joined other research organizations to provide statements for today's Senate Appropriations hearing, "Biomedical Research: Keeping America’s Edge in Innovation."
Our statement is under the US Congress section here: https://patientresearchcovid19.com/advocacy/
Video: https://appropriations.senate.gov/hearings/biomedical-research-keeping-americas-edge-in-innovation
Long COVID is an often debilitating illness of severe symptoms that can develop during or following COVID-19. In this Review, Davis, McCorkell, Vogel and Topol explore our knowledge of long COVID and highlight key findings, including potential mechanisms, the overlap with other conditions and potential treatments. They also discuss challenges and recommendations for long COVID research and care.
New today:
“A protein that disrupts cells’ energy centers may be a culprit in #chronicfatiguesyndrome “
“New study offers clues as to how exhaustion could arise in people with ME/CFS—and potentially related conditions such as #LongCovid “
Study includes data from the NIH inpatient #mecfs study
Kudos to @betsyladyzhets for excellent article. Captures the disappointment of many of us in the recently announced trials. #LongCovid #mecfs
Medscape article:
"3 Years Into Long COVID: Where Do We Go From Here?"
By Lisa McCorkell from Patient-Led Research Collaborative
Screenshot of two tweets from Lisa McCorkell listing what needs to be done.
Six year ago, I returned to NIH, where I started my career as a science writer, to be a patient in an amibitous study to understand post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The study included 30+ researchers & substudies & was a fishing expedition to understand what goes wrong to make us so sick (like bedbound-for-years sick).
NEWS: The study's findings have FINALLY been submitted for publication.
1/24
So, when this study is published, the patient community needs to remind Dr. Nath, NINDS Director Walter Koroshetz, and new NIH Director Monica Bertagnolli (nominated) that their work on ME/CFS - a not uncommon illness - has just started.
You can get more details here:
https://me-pedia.org/wiki/NIH_Post-Infectious_ME/CFS_Study
/end
The NIH has poured $1 billion into long Covid research — with little to show for it
STAT's Rachel Cohrs and Betsy Ladyzhets from MuckRock spent months investigating the $1 billion allocated toward long Covid research at the NIH. Not only does the agency have little to show for it, but projects that are known have fell short of expectations. Experts are worried that one clinical trial could, in fact, harm patients with long Covid.
Patient-Led Research
Eric Topol
Tom Kindlon
ahimsa
Brian Vastag
STAT