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ME research org opens poll on NIH funding problems

IACFS/ME says researchers faced unique challenges to obtaining government funding

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:

Over the years, IACFS/ME Board members have heard anecdotally from researchers, clinicians, and others that obtaining government-sponsored funding for research related to ME/CFS can be quite challenging, in some cases more challenging than that for other fields or medical conditions. Reasons that have been brought up include poor funding overall for the field, grant reviewers’ lack of familiarity with the condition, and lack of funding programs/ initiatives specifically targeting ME/CFS.

Proposed and planned actions might not be successful if they do not address existing barriers. Thus, we are polling the ME/CFS community this and next month regarding their views and experiences with regard to applying for government-sponsored funding. We also want to hear any ideas you may have for governments to stimulate or support research.

The poll is short (12 items total), anonymous, and open to anyone. We encourage non-IACFS/ME members as well as the international community to participate. Even if you are not involved in conducting research, we want to hear from you although some survey items might not apply to you. We hope to share poll results both in a future edition of this Newsletter as well as with US federal agencies and officials. Your participation in the poll can inform and influence future science policy so click on the link below to go to the poll and feel free to share the link with as many people as you wish. Thanks for participating!

Click to participate: IACFS/ME Government Research Funding Survey

Scathing criticism from patient advocacy groups

ME patients have been scathing in their criticism of NIH funding allocations.

In an article on ME, 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.

FEATURE PHOTO: Money! by Thomas Galvez


Written by Russell Logan


Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

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