NIH Working Group Releases Report on ME

Share on facebook
Share on twitter
Share on email

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.

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

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

Leave a Comment

Your email address will not be published.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

Latest News

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

Read More »

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Read More »

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).  Today, ME/CFS does not exist in the US ICD-10-CM. Instead,  most US doctors assign the code for chronic fatigue

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