Advocates and scientists respond to NIH’s Request for Information

Leading scientists, organisations and patients around the world have responded to the US National Institutes of Health’s (NIH’s) Request for Information to guide its research strategy on ME/CFS. It is the first time that the NIH has asked for public input on the disease.
The request, made in May, drew public responses from Dr. Ronald W. Davis of Stanford University, Dr. W. Ian Lipkin of Columbia University, advocates Jennie Spotila and Mary Schweitzer, and the European ME Alliance. Other groups, including the Solve ME/CFS Initiative and the Massachusetts CFIDS/ME & FM Association, announced that they were also making submissions.
Dr. Davis wrote on behalf of the Chronic Fatigue Syndrome Research Center at Stanford University, of which he is the director. He told the NIH, “The methods we need to understand this complex disease may very well not exist yet” and recommended the development of technology for “highly sensitive, quantitative molecular profiling and/or measuring novel cellular properties, as well as novel computational analyses that integrate multiple datatypes to define disease mechanisms”.
He said, “All data should be made publicly available as early as possible, even before publication”.
Dr. Lipkin described the collaborative work he had done with Drs. Lucinda Bateman, Mady Hornig, Nancy Klimas, Anthony Komaroff, Susan Levine, Eugene Major, Jose Montoya, Daniel Peterson and Beth Unger, and listed what he saw as the highest-priority gaps in knowledge.
Dr. Lipkin wrote, “Given the reticence of the medical community to accept ME/CFS as a biological illness, it is no surprise that medical schools do not include ME/CFS in their curricula”. The group’s recommendations included the setting up of a two-year, Master’s-level, multi-speciality training program for physicians to enable them to treat ME/CFS patients, and of a clinical trials unit for ME/CFS.
#MEAction is also submitting a report based on responses from over 1,800 patients, clinicians, caregivers and other stakeholders, and will report on their findings soon.

Facebook
Twitter
WhatsApp
Email

2 thoughts on “Advocates and scientists respond to NIH’s Request for Information”

  1. Formerly the Fatigue Consultation Clinic (FCC) and the Organization for Fatigue & Fibromyalgia Education & Research (OFFER), the Bateman Horne Center of Excellence (BHC), was formed in 2015 as a 501(c)3 nonprofit organization and is led by Lucinda bateman, MD and Suzanne D Vernon, PhD. They also prepared a response, which you can read here: https://batemanhornecenter.org/nih-rfi/

Comments are closed.

Latest News

reddish rectangle image with different color stripes of red coming out at a diagonal from the center. In the center is the TeachMETreatME logo. The words celebrating an impactful campaign in white font underneath the logo.

#TeachMETreatME: Celebrating An Impactful Campaign

We are THRILLED to share the rolling successes of our #TeachMETreatME campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months! (And don’t miss the global #MillionsMissing events later in the article!) Over the past several

Read More »

#MillionsMissing Week is Here: #TeachMETreatME in Action!

We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME).  Throughout the spring, summer and fall, #MEAction teams are hosting 13 medical education events to encourage medical providers to

Read More »

#MEAction’s Jaime Seltzer Selected for TIME100 Health 2024

We are thrilled to share with you that Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year! This is a huge honor based on years of work fighting for equity for people with ME.  We intimately know the

Read More »
Scroll to Top