International research advocacy group IACFS/ME has taken the extraordinary step of opening a poll to gauge the experiences of researchers when applying for government-sponsored funding of ME and CFS projects.
Researchers and patient advocacy groups recently criticized the lack of government spending on ME and CFS.
In a newsletter, IACFS/ME Co-Vice President Lily Chu notes that researchers faced unique challenges to obtaining government funding in the face of “poor funding overall for the field, grant reviewers’ lack of familiarity with the condition, and lack of funding programs/ initiatives specifically targeting ME/CFS”.
She asked researchers to send in their ideas on how to stimulate or support research into ME and CFS:
Scathing criticism from patient advocacy groups
ME patients have been scathing in their criticism of NIH funding allocations.
In an article on ME Advocacy.org, Tracey Smith wrote: “The deception emanating from the National Institute of Health (NIH) is that ME/CFS funding is a priority for them. They really want to fund our research but there are too few applications coming in to them and they are of poor quality.
“The fact is the ME community has been lucky to have recently attracted world renowned scientists to the field. These scientists have had their applications for NIH funding for their studies returned unapproved,” she said.
“NIH has approved countless applications for studies from these same scientists, as long as it was not ME/CFS related.”
The message — that high quality submissions were lacking — was repeated in the NIH response to the latest Chronic Fatigue Syndrome Advisory Committee (CFSAC) recommendations for research funding commensurate with the burden of the disease.
“Often, the funding level is driven by the number of high quality applications that are received. NIH encourages the ME/CFS research community to submit grant applications utilizing new and innovative approaches to study the disease,” noted the NIH.
Renowned scientists highlight disparities in letter to the NIH
In September 2015, a group of researchers, including world renowned scientist Dr Ronald Davis, sent the NIH an open letter highlighting the difficulties they faced in securing funding from the US health agency.
One passage from the letter notes: “Many of us have had a very difficult time securing adequate funding. Others have been unable to determine even how to apply for funding, as no institute within the NIH has responsibility for researching ME/CFS. The NIH has responded to requests for increased funding by stating that few researchers are interested in studying the illness.”
In the video below Dr Davis calls NIH out for their rejection of his research application for his Big Data Study using a cohort of the most severe ME patients.
About the IACFS/ME
The International Association for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis (IACFS/ME) is a multidisciplinary organization of scientists, clinicians, and educators dedicated to the study, care and treatment of patients with CFS, ME and fibromyalgia.
The organization regularly conducts international scientific conferences to promote and evaluate new research and to encourage future research ventures and cooperative activities to advance scientific and clinical knowledge of these illnesses.