NIH Working Group Releases Report on ME

Yesterday, the U.S. National Institutes of Health (NIH) published a report of the NANDS Council Working Group for ME/CFS research. #MEAction’s NIH Committee (comprised of staff and volunteers) will take time to thoroughly review this report’s recommendations and issue a full response to the NIH.

Read the NANDS report.

In the meantime, we want to share a few preliminary thoughts:

First, there are positive aspects to this report. It covers a broad range of issues that have been called out in previous reports, including:

  • the 2011 State of Knowledge Report,
  • the 2015 Pathways to Prevention Report, and
  • 2003-2018 CFSAC recommendations.

It recommends the creation of:

  •  a strategic plan to address the range of issues
  • a stakeholder group that includes advocacy organizations.

However, on a first pass, the strategies proposed to address the problems in this field are weak. The recommendations appear to lack the level of urgency, specific timeline, and institutional commitment commensurate with the burden of disease and the breadth of problems that have arisen from 30 years of misdirection and neglect. Specifically:

  • The report lacks a plan to deliver outcomes that matter to patients as quickly as possible, such as biomarkers and treatment trials.
  • It also appears to lack recommendations to provide ME/CFS-specific funding opportunities with set-aside funding, which are critically needed to rapidly overcome the scarcity of interest within the research community.
  • It lacks recommendations to address the research case definition in the short term, a problem which has confounded research for decades.
  • Lastly, it lacks meaningful recommendations to address the dearth of clinicians. While NIH’s focus is research not clinical care, this problem will throttle NIH’s efforts to expand research if it does not partner with other federal agencies to address this issue.

Each year, thousands more Americans will receive their diagnosis without any better access to treatment or care than those who became ill in the 1980s. While we see movement in this report, we see no clear evidence that this situation will change anytime soon. This is not enough. We must do better for people with ME.

You can download the full report from the NANDS working group here.

Facebook
Twitter
WhatsApp
Email

1 thought on “NIH Working Group Releases Report on ME”

  1. Thanks for the information. I hope I can get home in time to attend and call in. Yes, this is CRITICAL!

Comments are closed.

Latest News

A laptop sitting on a desk. In the background, you can see a cup and saucer, some post-it notes and a folder. On the screen is the Scottish Government's website, with a large title that says 'Scottish Good Practice Statement on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS).' A red banner is at the bottom of the photo with white writing which says, '#MEAction Scotland responds to the updated Scottish Good Practice Statement on ME.’ The ME Action Scotland logo is in the top left corner.

#MEAction Scotland responds to the updated Scottish Good Practice Statement

The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023.  The decision to update the Scottish Good Practice Statement, originally published in 2010, was a result of the Scottish stakeholder review of the 2021 NICE guideline on ME/CFS, and its recommendations for implementing the guideline in Scotland. The

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