Interview with Walter Koroshetz (NIH/NINDS Director) & Zaher Nahle (Solve ME/CFS Initiative)

[Jo Best]

Not sure that diseases belong to institutes. Grants are applied to the institutes the most closely matches the subject of the grant, and many diseases are funded by many different institutes.

Koroshetz stated that his institute (NINDS) covers about 400 diseases. ME/CFS used to be in the infectious disease institute. I'm not sure the year when it was moved out of an institute and placed into the Office of Women's Health.

I think oversight of the research was shifted from the Office of Research on Women's Health to NINDS in October 2015 following the IOM and P2P reports.

In this interview, Dr. Nahle references Dr. Francis Collins' statement that ME/CFS is one the "most challenging" of illnesses.

Dr. Collins quote:
https://www.nih.gov/news-events/new...ic-encephalomyelitis/chronic-fatigue-syndrome

NIH also is moving oversight of ME/CFS research from the Office of Research on Women’s Health to the National Institute of Neurological Disorders and Stroke (NINDS). http://www.sciencemag.org/news/2015/10/nih-refocuses-research-chronic-fatigue-syndrome

 

[Nielk]

I think oversight of the research was shifted from the Office of Research on Women's Health to NINDS in October 2015 following the IOM and P2P reports.

It is true that Dr. Collins had promised to move ME/CFS from OWH to NINDS but, in actuality, this hasn't happened.

CFSAC still states:

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS).

Office of Women’s Health (OWH) still lists ME/CFS as one of their diseases

https://www.womenshealth.gov/a-z-topics/


The list of NINDS diseases does not list ME/CFS

https://www.ninds.nih.gov/Disorders/all-disorders

 

[Nielk]

In their blog, Drs. Koroshetz and Collins state:

The NIH is committed to stimulating additional research to reveal the causes of this debilitating disease. ME/CFS is such a complex condition, affecting so many body systems, that we do not know where the answers will come from. Informed by results from a 2014 ME/CFS workshop [9], NIH initiated a call to action to all of its relevant Institutes and Centers in October 2015. The resultant NIH research effort, led by Trans-NIH ME/CFS Working Group, leverages an impressive scope of expertise across the NIH to attack this research gap.

I remember Koroshetz replying to someone's question as to when ME/CFS will be moved to NINDS. He replied that it is too complex and involving too many body systems to place in one institute, therefore the trans/NIH group will oversee the disease with NINDS at its head. Advocates were disappointed because this basically means that we are orphans without one specific institute taking responsibility. Additionally, there are other diseases that involve many body systems and still get a place in an institute.

 

[Jo Best]

I
Office of Women’s Health (OWH) still lists ME/CFS as one of their diseases

https://www.womenshealth.gov/a-z-topics/

The list of NINDS diseases does not list ME/CFS

https://www.ninds.nih.gov/Disorders/all-disorders

I remember Koroshetz replying to someone's question as to when ME/CFS will be moved to NINDS. He replied that it is too complex and involving too many body systems to place in one institute, therefore the trans/NIH group will oversee the disease with NINDS at its head. Advocates were disappointed because this basically means that we are orphans without one specific institute taking responsibility. Additionally, there are other diseases that involve many body systems and still get a place in an institute.

Thanks for clarifying and for the links.