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
How should patients be integrated into the NIH process? The US National Institutes of Health has made several promising, public steps forward in recent months, announcing a new commitment to research ME/CFS, hinting at possible new drug trials, and promising to use strict criteria including the Canadian Consensus Criteria to select patients for their intramural studies. Yet
Solve ME/CFS had a conversation with Vicky Whittemore of the US National Institutes of Health today regarding some pressing issues, in particular the participation of Brian Walitt in the study and the NIH’s plans for patient involvement. Dr. Whittemore was receptive to Solve ME/CFS’s opposition to Dr. Walitt’s participation in the study, but said that she has
What is the role of outrage in activism? “Anger is justified but, anger can be used against you. Anger can be misplaced or anger can be the flame that fuels the kind of passion that brings about great change.”
Over the weekend we wrote to NIH to share our article about Brian Walitt, along with comments from the community. We have received an initial response, but expect there will be more responses forthcoming that directly address patients’ concerns. The NIH also said they are finalizing a communications plan on the study so that communications
On Feb. 8, I wrote to NIH Director Francis Collins to express concern over the NIH’s mostly negative responses to the CFS Advisory Committee’s latest recommendations; the slow pace of formal patient involvement in the NIH’s new ME/CFS research program; and the originally-released use of the outdated Reeves criteria for selecting patients for the upcoming NIH inpatient
Open letter to Francis Collins, director of NIH, concerning myalgic encephalomyelitis Dear Francis Collins: The following happened since I got sick, without the NIH funding myalgic encephalomyelitis (m.e.) as a global crisis: Humans landed on the moon AIDS discovered, science, HIV discovered, excellent treatments; 2015 US funding $30.7 billion.1 multiple sclerosis sufferers released from mental
The US National Institutes of Health (NIH) has announced a $246,000 grant to study the use of an oral solution of isotonic saline to reduce orthostatic intolerance (OI) in ME/CFS patients. The grant has been awarded to New York Medical College’s Professor Marvin Medow, who has long had an interest in OI in ME/CFS, particularly
Brian Walitt is the lead clinical investigator for the NIH’s new intramural ME/CFS study. His appointment has raised serious concerns due to his strong views of diseases like chronic fatigue syndrome and fibromyalgia as psychosomatic. In 2015, Walitt co-authored a paper in which it was stated that CFS and fibromyalgia are somatoform illnesses, characterized by a “…discordance between the severity
Jennie Spotila Reports on NIH ME/CFS Spending in 2015 Jennie Spotila has written another detailed analysis on NIH spending on ME/CFS research. On a positive note, spending on ME/CFS grants increased to $6,470,000 in 2015, which was a 20% increase over fiscal year 2014 and, “for the first time since at least 2009, there were no
