April 2017 Research 1st – Dr. Nahle Letter


Dear Friends,

The proposed reductions to the NIH budget for medical research by 6 billion dollars in 2018 with possible additional cuts of 1.2 billion in 2017 are not only troubling but outright dangerous. Such cuts, once implemented, would have dire consequences for biomedical sciences in the United States and could markedly hamper the discovery process on all fronts. Ostensibly, they will also harm us in the ME/CFS disease space disproportionately and could even jeopardize the meager yet steady traction we have gained thus far at the NIH and within the medical establishment community. Here, we highlight a few points that are important to us and obvious to anyone with practical knowledge in experimental sciences and translational research:

  1. Dramatic cuts to the budget of a federal agency like the NIH, of which 80% of its funds goes to support innovations at academic and research centers across the Unites States, will impede collaboration in an already hostile funding environment. In 2000, 30% of proposals submitted to the NIH were funded. In 2016, it was around 17%. Some, including us, argue that ME/CFS funding is well into a stage of unhealthy competition in the research ecosystem, when compared with other diseases. These cuts will worsen our disease’s predicament, and even create animosity among investigators. What we need is more not less.
  2. graphCuts to the NIH will impact the development of new drug applications at the FDA. In a disease space like ours, which suffers first and foremost from the absence of any FDA approved drug, this connection is particularly relevant.  An analysis of the FDA drug approval process published in in the New England Journal of Medicine found that therapeutics with roots at PSRIs (Public Sector Research Institutions), which includes all universities, research hospitals, nonprofit research institutes, and federal laboratories in the United States, are essential for the generation of life-altering drugs. In fact, more than twice as many of the new-drug applications from PSRIs receive priority reviews over those starting in the private sector (usually pharmaceutical companies) and “virtually all the important, innovative vaccines that have been introduced during the past 25 years have been created by PSRIs.” As such, the FDA approval of promising drugs as well as diagnostic instruments, devices and tools for ME/CFS could be inevitably slowed down because of these funding cuts, which will dramatically affect PSRIs. 100% of current ME/CFS research is conducted at PSRI’s.
  3. chartCuts will have a demoralizing impact that should not be underestimated. Facing the prospects of financial contraction, many stakeholders from nonprofits to federal institutes – regardless of their fields or affiliations – may now recoil to their respective corners and seek to protect their “turf.” This will introduce a considerable strain on philanthropic donations as well as the attraction and retention of new talent. Besides, these cuts will create internal logistical nightmares within the agencies themselves. Let’s not forget that even the small ME/CFS effort at the NIH is the outcome of the Trans-NIH working group, where multiple institutes were forged to collaborate and to contribute funding. Here, we caution against using any NIH-wide cuts as an excuse to roll back the commitment to ME/CFS, in any way.

In our fall issue of The Chronicle, we highlighted the severe knowledge gaps in ME/CFS and showed how they are proportionate to the lack of investment and spending in biomedical research. We include the link here, for this is relevant in the current context.

Reforms are always needed and welcomed to improve quality, eliminate frills and guard against wasteful spending. That said, in a world that is still not free of ME/CFS and where countless debilitating diseases also exist, elongating the path towards finding a cure by compromising innovation is not a strategy that we can ever support.


Zaher Nahle PhD, MPA

Chief Scientific Officer & Vice President for Research