Want to know more about the research centers and data center being planned for ME/CFS by the National Institute of Health (NIH)? Directors at the NIH discussed the research centers and answered questions from people with ME along with researchers in a phone call on Feb. 2. The NIH will provide $30 million over the
Bird-dog: (verb) search out or pursue with dogged determination. Contact with elected officials at town hall meetings cannot be overvalued. Handfuls of bird-doggers attend meetings around the country and change the course of history everyday. Never heard of bird-dogging? Bird-dogging is a strategy used by activists who seek out elected officials, pin them down with
A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good afternoon. I have had untreated ME/CFS for 38 years. Our testimony today is on the topic of the Center for Diseases Control’s (CDC) CFS group. The 2015 National Academy of Medicine report characterizes post-exertional malaise, or
Momentum continues from the #MillionsMissing campaign that was born last May. Activists took to the streets worldwide in 11 cities in May – and in 25 cities in September – to protest their government’s neglect of people with ME. While the posters are now stored away, activism has continued behind the scenes in follow-up
We have some quick updates on the planned NIH talk by Dr. Edward Shorter, a well-known ME denier and history professor. –NIH has refused to budge despite the near-universal community outcry, numerous letters to both NIH and congressional leaders, and Dr. Davis telling NIH he will demand a Congressional investigation if this goes forward. —
Hi, everyone! This is more of an opinion piece, though it does have to do with #MillionsMissing. As you might imagine, we will really need healthy people to come out and support us: to help with setup and cleanup; to hand out water and food; and to raise their voices alongside our own. I wrote
In Dr. Albright’s study of the families of ME/CFS patients in Utah, risk of ME was found to be 2.7 times greater in first-degree relatives of ME patients, 2.3 times greater in second-degree relatives, and 1.93 times greater in third-degree relatives. This familial clustering is the basis for new research in Norway, where scientists are
ANNOUNCING MEETING ABOUT THE DEMANDS These demands were originally intended for a protest in Washington D.C. alone, but over time, #MillionsMissing has grown into a national, multi-city protest. With that in mind, we will have an open community meeting on Wed. May 11th, 2 pm EDT to discuss the demands and hear any questions or
A pdf of this article is now available here. On 21 April Dr Avindra Nath gave a Solve ME/CFS Initiative webinar hosted by Dr Zaher Nahle. The phrase that stood out in Dr Avindra Nath’s description of the NIH ME/CFS study was ‘world-class’. He emphasized the innovative technology the NIH has at its disposal, and
The #MillionsMissing protest is full-steam-ahead: we’re mobilizing in Washington D.C., Seattle, San Fransisco, and Dallas; we’re revving up our engines in other cities all across the United States, our friends in other countries have pitched in, and the enthusiasm has reached an all-time high. However, if you’re sitting at your computer holding five spoons for
