The Pediatric and Adolescent ME/CFS Primer team is aiming to complete the new Primer by mid-October, 2016. As was done for the adult ME/CFS Primer, the team would appreciate having original artwork for the cover of the Pediatric and Adolescent ME/CFS Primer
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
Swedish ME patient Kasper Ezelius has announced the launch of an email service called CureME that will allow subscribers to both post and receive news on ME/CFS. Subscribers can choose to receive research news only, which is the main focus of the site. Registration is free. The list replaces Co-cure, an ME/CS information
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
“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passion, they cannot alter the state of facts and evidence.” —John Adams “Coming together is a beginning. Keeping together is progress. Working together is success.” –Henry Ford In light of recent gratuitous and profane attacks
In November 2015, six lectures on ME were held in Stavanger, Norway. The event was filmed and made into a DVD which is now available for an international audience with English subtitles for the Norwegian lectures.
A small group of wheelchair users suspended themselves from a bridge in Bolivia to protest treatment of disabled people and demand higher government benefits. Received international news coverage. Read more
An international group of 36 scientists and clinicians have added their names to an open letter that was sent three months ago to The Lancet, pointing out serious problems in the PACE trial. The letter, sent on 13 November, told The Lancet’s editor, Richard Horton, that “such flaws have no place in published research” and
Large controversial UK study still refusing to release data: latest update on the PACE trial
What if we could take all of the information we have learned from all of those years of hundreds of people reading and writing about thousands of news and research articles across all of our forums and blogs and Facebook pages, and create one massive, interlinked, and structured knowledge base?
