For the first time, NIH has requested public input into the future direction of ME/CFS research. This is a chance for researchers, organizations, advocates, and others to provide input directly to the Trans-NIH ME/CFS Working Group on the following questions:
- Emerging needs and opportunities that should be considered as new ME/CFS research strategies are developed.
- Challenges or barriers to progress in research on ME/CFS.
- Gaps and opportunities across the research continuum from basic through clinical studies.
The deadline for response is June 24th, and responses to the RFI must be submitted via email to MECFSRFI@mail.nih.gov.
I sincerely hope that many experts will submit their input, and that the input will be specific and constructive. A general call for more funding does not get at the questions NIH has asked, although it is obviously part of the answer. I am awaiting confirmation from NIH about whether they will make responses publicly available after submission.
I’m working on my own response, and I thought my outline might help readers brainstorm about what to say. This is just my own personal opinion. You may have other priorities that you think are important. I’ve previously shared the elements of my road map for ME/CFS, but I got a lot more specific in answering this RFI. You could also look at the P2P Action Items for inspiration. Here’s my outline:
Emerging needs and opportunities:
- Investigate energy production and recovery mechanisms.
- Confirm the utility of two-day VO2max cardiopulmonary exercise testing (CPET).
- Analyze existing samples for biomarker discovery.
- Undertake a deep dive for biomarker discovery.
- Conduct an accelerated longitudinal study to elucidate the natural history of ME/CFS.
- Address the questions of burden of disease and undiagnosed ME/CFS patients.
- Invest in development and validation of outcomes measures.
- Fund systems biology and computational biology approaches to pathophysiology.
- Leverage wearable devices to objectively measure function.
Challenges and barriers to progress:
- The failure to reach consensus on case definition is a steep barrier to progress across the ME/CFS landscape.
- More resources and heightened urgency are required to address this public health crisis.
- ME/CFS patients, researchers and clinicians are not involved in NIH’s efforts in a sustained and meaningful way.
- There are very few ME/CFS researchers in training.
- Methodological flaws make it challenging to interpret the evidence base.
Gaps and opportunities across the research spectrum:
- ME/CFS research requires a coordinated, strategic plan.
- Clinical trials and pediatric research are significant gaps in the current approach to ME/CFS research.
If you have the ability to submit responses to NIH, I strongly encourage you to do so. One of the worst outcomes would be if NIH gets very few responses to this RFI. That could reinforce the view that there are just not that many people interested in ME/CFS research. So if you can send even one specific answer to NIH, I hope you will!