Register for Virtual Advocacy Day today! The 5th Annual ME/CFS Advocacy Day April 20, 2021 The 5th Annual ME/CFS Advocacy Week will take place from Sunday, April 18, 2021 to Saturday, April 24, 2021. This year, “ME/CFS & Long COVID Advocacy Day” welcomes all of our friends and partners from the complex, chronic illness community […]
NIH launches database to track neurological symptoms associated with COVID-19
A new database will collect information from clinicians about COVID-19-related neurological symptoms, complications, and outcomes as well as COVID-19 effects on pre-existing neurological conditions. The COVID-19 Neuro Databank/Biobank (NeuroCOVID), which was created and will be maintained by NYU Langone Health, New York City, will be a resource of clinical information as well as biospecimens from […]
NIH Study
The Solve ME/CFS Initiative held a phone call with Vicky Whittemore, Ph.D., of the National Institutes of Health yesterday regarding our concerns over staffing of the NIH’s new intramural study on ME/CFS. Read More…
Pathways to Prevention
Last week’s long-awaited briefing on the National Institute of Health’s Pathways to Prevention (P2P) report on ME/CFS failed miserably at continuing the momentum created earlier this year by the Feb. 10 Institute of Medicine publication on the disease. Read More…
The P2P Report – CFSAC Drafts Substantive, Expert Response
On 1/13/2015, the CFSAC met and finalized its response and feedback to the P2P draft report. SMCI participated in the process, with Carol Head, president and CEO, serving on the CFSAC working group. SMCI will endorse the CFSAC response in it’s feedback to the P2P panel concerning the report. LEARN MORE…
P2P Draft Report Set to be Published, 30 days for Feedback
On December 9 & 10, the Pathway to Prevention Workshop for “Advancing the Research on ME/CFS” was held. The draft report is scheduled to be posted on December 18, 2014 with a 30 day comment period. The Solve ME/CFS Initiative will work with members of its Research Advisory Council and other advisers to issue a response to the report. Access the workshop recordings a READ MORE
P2P Draft Evidence Review
The Pathway to Prevention draft evidence review has been released. Can a process that seems inappropriate for ME/CFS help inform a path forward? SMCI has utilized the collective brainpower of our Research Advisory Council, led by our scientific director, Suzanne D Vernon, PhD, to perform a careful review and response to the Evidence-Based Practice Centers’ draft evidence-based review for ME/CFS. READ MORE…
P2P Workshop – Registration Now Open
Registration is now open for the Pathways to Prevention workshop for Advancing the Research on ME/CFS. Interested individuals may register to attend live or participate via webcast. It is our hope that many stakeholders will participate in this process in order to ensure the patients have a strong presence and a voice. Read more…
Solve ME/CFS Initiative (SMCI) Position on P2P
An NIH Pathway to Prevention workshop focusing on ME/CFS is in development. Many in the ME/CFS community have concerns. The Solve ME/CFS Initiative has them as well, specifically about the evidenced-based literature review. SMCI has taken steps to urge the NIH to correct it. Read more about what is underway…
Pathways to Prevention for ME/CFS
There is a lot of activity on a federal level related to ME/CFS –including the Pathway to Prevention (P2P) initiative through the National Institutes of Health. In this post we break down the P2P program and where ME/CFS is in the approval process so far.