In response to at request from Congress, the U.S. National Institutes of Health (NIH) is developing a 5-year strategic plan which will, among other things, set research priorities based on burden of illness.
While this plan is not meant to be disease-specific, it assumes all diseases are covered in the strategic plan of NIH's myriad Institutes, Centers, and Offices (ICOs). The National Institute of Allergies and Infectious Diseases (NIAID) and the National Institute of Neurological Disorders and Stroke (NINDS) are examples of ICOs.
Of note, M.E. is not part of any ICO strategic plan. M.E., unlike other diseases, does not have a home in a major Institute like NINDS or NIAID. Instead, it is housed in the Office of Research on Women's Health (ORWH). ORWH's last strategic plan, which covers all years up to 2020, does not even mention "chronic fatigue syndrome" let alone M.E.
Funding for M.E. is an astonishingly low $5 million, way below other diseases and especially absurd considering the CDC estimates its illness burden (overall cost to the economy) at $17-24 billion.
Public input is requested. Both of the above points are worth bringing up. The deadline for comments is August 16th. This is a great opportunity to make constructive arguments for including M.E. in the overall NIH plan.
Using the comments section, especially the last part entitled "Future opportunities or emerging research needs" can only highlight the need for M.E. research.
Let's let NIH know we are fed up with being forgotten! Click on the link for more information and the public comment form.
ETA: I just found out NIH is hosting a webinar open to the public on the NIH Strategic Plan at 4 pm EDT on Thursday, August 13. Click here to register: https://www.eiseverywhere.com/ehome/index.php?eventid=135523&