This study is the worst kind of science, and noticing flaws does not mean we are sociopaths or psychopaths. Neither does it mean we’re close-minded members of a group that’s only interested in our own views.
The time for decency in the face of the overwhelming failure of PACE for many has justifiably passed you by, but potential futility aside, I make this appeal regardless. Every day there is a new ME/CFS patient. Today you can spare that patient from harm. You can spare them from being accused of malingering by their own friends and family. You can spare them from wrongful imprisonment in a psychiatric ward. Today you can set ME/CFS research on an expedited path that leads to real treatments and ultimately a cure. End this tragedy now.
The Chicago protest #MillionsMissing will feature talks by Dr. Leonard Jason, Dr. Marcie Zinn, well-known epidemiologists; Carol Head, of Solve ME/CFS; Barbara Morrison; ME/CFS patients; and families and friends. It will take place at the James Thompson Center, 100 W. Randolph St, Chicago between 11:30am-12:30pm. Please click below to attend, learn more and donate to
The NYC #MillionsMissing Protest has a full agenda and they are excited to announce several major speakers in attendance including local NYC ME/CFS physician (and Chair of the Chronic Fatigue Syndrome Advisory Committee), Dr. Susan Levine. In addition, local physician-scientist Dr. Mady Hornig from the Columbia University Center for Infection and Immunity (and the ME/CFS Microbe Discovery Project) will also be in attendance. NYC will also have several patients and caregivers tell their personal stories. If you plan to attend and would like to share your story at the protest, please contact them. Finally, as opposed to the shoe display used at other locations, NYC will be doing a unique display using balloons and posters.
After months of hard work from #MEAction, #MEAction Network UK, and many others including advocates, government officials, lawyers, and PACE experts, a group of concerned global citizens have crafted a petition to the UK government to stop graded exercise therapy trials in ME/CFS. If this petition reaches 10,000 signatures from UK citizens, its content will
A total of 55 members of Congress have signed on to a letter asking NIH Director Francis Collins: 1) to consider in a timely manner the input received through the NIH Request for Information, and 2) to update Congress on the NIH’s plans for ME/CFS research through 2018. The letter was co-sponsored by Rep. Zoe
Ever since the #MillionsMissing protests in May, volunteers have been working on a new site design for #MillionsMissing, and we are pleased to announce that it has just launched. The new site is the work of professional designers and programmers who have generously donated their time to make this happen, as well as numerous volunteers
This #MEAction in the UK press release on the PACE trial decision was written by a committed team of patient volunteers, and has resulted in much of the press coverage about this important tribunal decision. You can read the full press release by clicking in the upper right-hand corner of the document below. Incompatible browser?
The Lancet has rejected a letter criticising the PACE trial that it invited from a large group of scientists. This decision was made after its editor discussed the matter with the study’s authors. Professor Vincent Racaniello, who led the letter, described the behaviour of Dr. Richard Horton, editor of The Lancet, as “unprofessional”. Racaniello, with
Press Release Toronto – August 28, 2016 – “This is ludicrous!” writes Dr. Ian Hyams about the Canadian Institute of Health Research (CIHR) decision to deny funding for a networking grant for the neurological disease Myalgic Encephalomyelitis (ME). Dr. Hyams, Medical Director of the Chronic Pain and Fatigue Clinic, expressed further concern stating that “the
