#MEAction Sends Recommendations to CDC to Update its ME Website

This past July, 2018, the U.S. Center for Disease Control and Prevention (CDC) launched new webpages about myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) geared to practitioners. ME advocates, clinicians and researchers had provided feedback about updates to these pages but not all of their recommendations were taken on board. As a result, some sections of the site continue to misinform medical providers and potentially put patients at risk.

As a result, we are urging the CDC to make further changes to its website that make clear the harms of graded exercise; place greater emphasis on the importance of pacing; and more accurately represent severe ME.

(The CDC had previously removed recommendations for graded exercise therapy and cognitive behavioral therapy a year prior in July of 2017.)

I wrote an analysis about the CDC’s new webpages this past July, and the community weighed in about the CDC’s new ME/CFS webpages with 66 comments.

Based on my analysis and community feedback, #MEAction will send to the CDC the following recommended changes to update its ME/CFS webpagesCommunity-based suggestions to our recommendations are in red ink.

A special thanks to the fleet of patients who have helped by engaging with the CDC for the past few years — or the past few decades. I could not have written this without their feedback and assistance, and we would not be here without them.


Read our Recommended Changes to the CDC’s ME/CFS Webpages:  

Facebook
Twitter
WhatsApp
Email

Latest News

Red rectangle with the 2025 #millionsmissing logo, then the words Share this SOS Image on your socials. the meaction logo at the bottom right corner.

Share This SOS Image On Your Socials

Please help us spread the word! Share and interact with #MEAction’s social media (we are @meactnet) and share this amazing artwork (above ⬆️ ) and a message about #MillionsMissing with your own networks. Desktop: Download by right clicking on the image or clicking on the download icon in the bottom right corner of the image. Mobile:

Read More »

Millions Missing Scotland 2025: Red alert for ME

This year, Millions Missing Scotland is raising a red alert. Will you be part of it? #MEAction Scotland volunteers will be outside the Scottish Parliament in Edinburgh on Wednesday 14th May, from 12–2pm, calling on the Scottish Government to urgently act on its promises. Around the world, millions are missing – from school, work, communities,

Read More »
redish square image with the US Capitol photo with a red overlay on top of it. The words Congress is hearing from us. Then the MEAction logo in the center bottom.

#MEAction: Congress Is Hearing from Us

#MEAction has been hard at work connecting individuals to their elected officials to talk about the ME/CFS Research Roadmap, Medicaid, and telehealth.  We’ve been partnering with #NotJustFatigue on setting up congressional meetings in order to ask our elected officials for their support in making funding of the ME/CFS Research Roadmap a reality. #MEAction State Chapter

Read More »
Scroll to Top