NIH Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyeli

Who Me?

Well-Known Member
From Neuroinflammation, Pain & Fatigue Laboratory at the UAB

As a followup to the NIH ME/CFS initiative I mentioned last week, a new announcement was released just a few days ago. The NIH is requesting information from researchers, clinicians, patient advocates and others that will be used to shape the NIH's priorities for the next few years. These "requests for information" allow NIH to make the best plan possible moving forward . . .

https://grants.nih.gov/grants/guide/notice-files/NOT-NS-16-024.html

https://grants.nih.gov/grants/guide/notice-files/NOT-NS-16-024.html
 

Merry

Well-Known Member
Jennie Spotila wrote about this request for information at her blog published May 30th: http://www.occupycfs.com/ .

Jennie says it's important to respond, and I might be willing to write something, but I hardly feel qualified to advise NIH on research strategies.
 
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Who Me?

Well-Known Member
Maybe I missed it but in the fine print I didn't see them wanting input from patients.
 

Merry

Well-Known Member
Maybe I missed it but in the fine print I didn't see them wanting input from patients.
Oh. This is what Jenny wrote:

I can’t emphasize enough how important it is for us to respond to this RFI. To my knowledge, it is the first time our opinions have been solicited as part of a planning process. There is no reason that I can see for us not to offer our best input in response to the request.
 

Who Me?

Well-Known Member
I am going by what I read on the site. It did not say patients. That doesn't mean they can't I guess.
 

Who Me?

Well-Known Member
@Merry
Through the RFI, the Trans-NIH ME/CFS Working Group invites input from researchers, health care providers, patient advocates and health advocacy organizations, scientific or professional organizations,
 

Merry

Well-Known Member
Jennie Spotila posted today on her blog about the importance of responding to the NIH request for information. The deadline is the 24th of June. She presents an outline of her response and also suggests looking at the P2P Action Items for inspiration. She provides a link that will give you the action items.

Here's her outline:

Emerging needs and opportunities:
  1. Investigate energy production and recovery mechanisms.
  2. Confirm the utility of two-day VO2max cardiopulmonary exercise testing (CPET).
  3. Analyze existing samples for biomarker discovery.
  4. Undertake a deep dive for biomarker discovery.
  5. Conduct an accelerated longitudinal study to elucidate the natural history of ME/CFS.
  6. Address the questions of burden of disease and undiagnosed ME/CFS patients.
  7. Invest in development and validation of outcomes measures.
  8. Fund systems biology and computational biology approaches to pathophysiology.
  9. Leverage wearable devices to objectively measure function.
Challenges and barriers to progress:
  1. The failure to reach consensus on case definition is a steep barrier to progress across the ME/CFS landscape.
  2. More resources and heightened urgency are required to address this public health crisis.
  3. ME/CFS patients, researchers and clinicians are not involved in NIH’s efforts in a sustained and meaningful way.
  4. There are very few ME/CFS researchers in training.
  5. Methodological flaws make it challenging to interpret the evidence base.
Gaps and opportunities across the research spectrum:
  1. ME/CFS research requires a coordinated, strategic plan.
  2. Clinical trials and pediatric research are significant gaps in the current approach to ME/CFS research.
 

Merry

Well-Known Member
Sue Jackson, who writes the blog Learning to Live With ME/CFS, has posted her response to the NIH request for input. She addresses specific treatments that she thinks should be more widely available to patients. Both Sue and a son have ME/CFS; a second son, ill with a milder form at one time, has recovered.

She urges patients to write to the NIH even if they are only able to write a short message.

Here are instructions from the NIH:

Responses to this RFI must be submitted via email at MECFSRFI@mail.nih.gov

Responses will be accepted through June 24, 2016.

Responses are voluntary and may be submitted anonymously. Respondents are advised that the Government in under no obligation to acknowledge receipt of the information received or provide feedback to respondents with respect to any information submitted. Please do not include any personally identifiable or other information that you do not wish to make public. No proprietary, classified, confidential, or sensitive information should be included in your response.
More information is at https://grants.nih.gov/grants/guide/notice-files/NOT-NS-16-024.html
 
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