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
Dr. Zaher Nahle from the Solve ME/CFS Initiative recently interviewed Dr. Avi Nath, who is leading the intramural study on ME/CFS at the NIH. The intramural study on ME/CFS at the NIH has raised some concerns in the ME/CFS community: the appointment of Dr. Walitt, who has made statements implying that he views ME/CFS as
Last week, #MEAction had its first planning call for the May 25th #MillionsMissing protest. The protest, with the theme #MillionsMissing, brings attention to the millions of people with ME/CFS missing from their work, their families, and their lives, and the millions of dollars missing from research funding. To show this invisible illness, we are asking
On 20 April, the UK’s General Medical Council (GMC) imposed limits on the medical license of Dr Nigel Speight, well known for his work in protecting children with ME/CFS against inappropriate psychological intervention and removal from their families. The limits come after a complaint from Esther Crawley, medical advisor to the Association of Young People with ME.
a may 12 project. The challenge is to get as many buildings as possible in your country to light up with one of the 3 colours used on May 12th – blue, purple or green. We want public buildings/places like City Halls, Niagara Falls and we want individual homes lit up too!
#MEAction is seeking poems to honor those around the world struggling with M.E. This call to poets is designed to complement other awareness projects taking place during May. Our goal is to proudly display the creative resources of our community and to celebrate the courage it takes to speak out about the injustices and suffering we face on a daily basis.
Anne LiConti is a member of the ME/CFS community who needs our help to obtain a life-saving surgery. Anne’s uterine fibroids have grown so large and numerous that her uterus is now the size of a 14-week pregnancy. This March, I was stricken with extreme complications: uterine hemorrhage from the fibroids. I started having orthostatic
At the NIH tele-briefing on Tuesday, March 8th, Dr Walter Koroshetz, Director of NINDS set out the NIH’s strategy for tackling ME/CFS. He said it won’t be an easy task ‘else it would have been solved long ago’, and it wasn’t clear where the solution will come from. The NIH’s focus will be on attracting
On Tuesday, March 8th, NIH held a one hour tele-briefing to answer the community’s questions about their plans for the intramural study and the ME/CFS program. What follows is a full transcript of the conference call. You can view the transcript and listen to the audio of the call on the NIH website. On the call were
Editor’s note: This is a clarification on the NIH’s earlier, accidental release of the intramural study protocol, which listed the Reeves definition as the sole definition of the new study. Robert and Courtney’s summary of their conversation has been confirmed by multiple sources within the patient community, including #MEAction. Robert and I had a well-timed