Category: CDC

WHAT TO LOOK OUT FOR AT THE CDC’S SEP. 2020 ME/CFS MEETING

Mark your calendars! The CDC will hold its next ME/CFS Stakeholder Engagement and Communication (SEC) conference call on Wednesday, Sept. 23 at 3 pm Eastern Time. Find information on how to call into the meeting here. The CDC program staff only hold SEC meetings a couple of times a year so now is your chance to participate!  These

Read More »

MAYO CLINIC REMOVES GET AND CBT FROM CFS WEBPAGE

The Mayo Clinic recently removed harmful recommendations of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) for myalgic encephalomyelitis (ME) from their website, a win for people with ME and their families. The site still contains problematic language and misleading information, but this recent change could help many individuals seeking care for their ME. For

Read More »

#MEAction Sends Letter to CDC Calling for Transparency and Progress

The U.S. Center for Disease Control and Prevention (CDC) has initiated various projects focused on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), but there has been very little transparency or engagement with the patient community about the CDC’s overall plans, the approaches being used, or the status of the projects underway. Further, many of the

Read More »

We need Effective, Strategic, and Respectful Engagement from CDC

On June 3rd the CDC held its latest MECFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call with the ME community. The need for change in the CDC’s stakeholder engagement meetings has been a long time coming. However, this Monday, the majority of the call was a presentation comprised of simple lifestyle advice for ME, including

Read More »

Advocacy Round-up – A Season of Protest and Petition

The #MEAction community has dug in deep this fall to undertake the incredibly important work – and heavy lifting – of ensuring that our health agencies create guidelines that will improve the lives of people with ME. We are holding our government officials accountable for their decisions that affect our daily lives. We continue to

Read More »

Sept & Oct — Research Roundup

The end of September was a whirlwind! Between the CDC’s website work, the CDC’s awarding of a sole contract, the planning sessions for the NIH meeting, and the Stanford symposium, there wasn’t much time to devote to breaking down the science.  If you’d like to see a quick run-down of what’s been going on lately

Read More »

It has been an Intense Week!

It Has Been A HUGE Week in the U.S.! This last week has been a bit of a whirlwind – we’ve never been busier! It’s been a week of advancing the cause of health equality for people with myalgic encephalomyelitis through the launch of the Unrest continuing medical education program and the expansion of our US advocacy team. It’s also

Read More »