Advocates and scientists respond to NIH’s Request for Information

Share on facebook
Share on twitter
Share on email

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.

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
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/

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Is NIH blowing another opportunity to advance ME/CFS research?

Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The National Institutes of Health (NIH) has many questions to answer about its lack of tangible progress or strategic acceleration of medical research for people with ME. Read Our Questions for NIH ME/CFS research opportunity being missed

Read More »

Stanford study enrolling now

Who: Ron Davis’s lab at Stanford University is conducting a functional microbiome study in collaboration with Harvard University and Vassar College. They are looking for severely Ill, primarily bed-bound patients within the United States to participate. What: Participants will be asked to provide a one-time fecal swab which can be collected at home and sent

Read More »

“The treatment of ME has been Dickensian” – NICE’s roundtable on the ME/CFS guideline

After NICE’s roundtable, Janet Sylvester tells us: “I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic the guidelines will be published.”

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top