United States Archives

#MEAction Sends Recommendations to CDC to Update its ME Website

October 11, 2018 No Comments

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

POTS and Beyond Conference 2018

October 9, 2018 3 Comments

The POTS and Beyond conference held in Salt Lake City this past weekend brought together experts in the field to educate physicians and patients on what is known about autonomic dysfunction. The neurology department of the University of Utah School of Medicine partnered with Dysautonomia International and Granger Medical to create this two-day event. The

Take the NYU Research Survey about your ME Experience

October 4, 2018 11 Comments

I’m a researcher at NYU interested in the experiences of people with ME/CFS in the U.S.

Join the Stanford Community Symposium via Livestream

September 21, 2018 No Comments

The Stanford Genome Technology Center will host the Second Annual Community Symposium on the Molecular Basis of ME/CFS, sponsored by the Open Medicine Foundation, at Stanford University on Saturday, Sept. 29. The following researchers will be presenting: Ronald W. Davis, PhD, Maureen Hanson, PhD, Jonas Bergquist, MD, PhD, Wenzhong Xiao, PhD, Alain Moreau, PhD, Ronald G.

NOW Adopts Resolution for ME

September 20, 2018 5 Comments

The National Organization for Women (NOW) adopted a resolution for diseases and conditions affecting large numbers of women, including myalgic encephalomyelitis (ME), at its conference this past July. The resolution is now live on NOW’s website, read the full resolution below. The resolution recognizes the need to increase research funding, raise awareness and combat stigma for

Alphabet Soup – Your Guide to Current U.S. Actions

September 17, 2018 1 Comment

When it rains, it pours! There has been so much activity in our US health institutions that it’s easy to lose track. Here’s a handy update to help us all keep it straight. HHS (Health and Human Services) The HHS recently and without warning shut down CFSAC, the Chronic Fatigue Syndrome Advisory Committee. While flawed,

NIH Creates Council to Advance ME Research

September 15, 2018 8 Comments

The National Institutes of Health (NIH) has formed a new council focused on how best to advance research into myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The committee, called the NANDS Council Working Group for ME/CFS Research, will be comprised of scientists, clinicians, representatives from advocacy organizations, and individuals with ME, including a representative from

How To Protest HHS with #MEAction

September 7, 2018 26 Comments

We will protest the U.S. Department of Health and Human Service virtually, on social media, on Friday, Sept. 14th. We have canceled the in-person protest in Washington, D.C. due to the fact that a hurricane is headed for that area on Thursday. We will reschedule the Washington, D.C. protest for a later date. Our virtual protest on Friday,

HHS Secretary Kills CFSAC!

September 7, 2018 12 Comments

If you were on the CFSAC committee, you awoke to the following email in your inbox yesterday morning: Good morning, I’d like to personally extend my gratitude to you for serving as a member of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).Your input as a subject matter expert in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has

Stop CDC from Hiring Shoddy Contractor for ME Treatment Guidelines!

August 26, 2018 No Comments

PETITION UPDATE (Tuesday, September 11, 2018) The CDC has posted an updated, competitive bid solicitation for the development of federal treatment guidelines for ME. The community outcry, and over 8,000 petition signatures, protesting the previous rigged, sole-source contract got the CDC’s attention. Yet the solicitation is still only open through Thursday, September 13 meaning interested applicants

Category: United States