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Institutional Woes

There’s no easy way out. If chronic fatigue syndrome is ever going to get the funding it probably needs to find a new home. Moving is never easy…

Right now, ME/CFS is the sole property of the small Office Of Research For Women’s Health (ORWH) in the Office of the Director. The ORWH receives no funding for ME/CFS, and the structure set up to provide funding from the Institutes –  the Trans-NIH Working Group (Working Group) –  has failed utterly.

Chronic fatigue syndrome NIH

ME/CFS probably needs to have a new home to have a chance at real funding

We’re darn lucky to have the ORWH.  Fifteen years ago, Vivian Pinn, the Director of the ORWH, saw us wandering in the NIH without with a home and gave us shelter. Claiming that ME/CFS was a multidisciplinary disorder that no longer fit its mandate, the NIAID had booted us into the wilderness. Nobody had picked us up.

Unless the NIH decides to finally give us a budget at the ORWH, though, we can’t grow there.  Even if they did give us a budget  it’s not certain we’d want to be there if we had an alternative: the ORWH is never going to be able to devote the kind of money to ME/CFS that this disease needs.

The best place for us – for any disease – is in one of the powerful Institutes at the NIH. Being in an Institute that doesn’t want us, though, may not be much of a help. For one, we probably couldn’t get in one. For two, we might just get ignored there as well.

Now with the IOM and P2P reports providing us some clout we’re at a time of trial; we’ll either find a way out of this mess, or continue on as we are.

Is the Welcome Mat Out Anywhere?

The question, then, becomes if any Institutes want us?

There are two obvious possibilities: our old home – the National Institute of Allergy and Infectious Diseases (NIAID), and the National Institute of Neurological Disorders and Stroke (NINDS). Dennis Mangan believes NINDS is our best shot.

I looked a current funding record to see if either Institute was funding more than the other. Neither appeared to be. Neither was funding us well (no one is), but both were funding some really good projects.

NIAID

ROI’s (the BIG grants)

  • Daily Immune Monitoring – Jarred Younger (Univ of Alabama at Birmingham)
  • Immune cell and gene expression – Campagne (Cornell)
  • Immunologic biomarkers, subsets – Fletcher (R56 – NSU)
  • Microbiome (gut) and Inflammation – Hanson (Cornell)
  • Infectious mononucleosis and ME/CFS – Katz (Lurie Children’s Hospital)

R21 (the smaller grants)

  •  IGG receptor gene – Hudig (Univ of Reno)
  • Non-Hodgkins lymphoma and ME/CFS (Albany State University – New York)

NINDS

ROI’s (the BIG grants)

  • Mast cells and the brain- Theorharides
  • Exertional exhaustion – Baraniuk (Georgetown)
  • Effects of stress management on  neuroimmune factors – Antoni (Univ. of Miami)
  • Gender differences in gene expression and immune functioning – Fletcher  (NSU)

R21’s (the smaller grants

  • Gene expression in cerebral spinal fluid – Baraniuk (Georgetown)
  • Neurologic abnormalities  – Natelson –  (Beth Isreal Med Center)
  • Gene expression after exercise – Patrick – (Univ of British Columbia_

Let’s see what disorders the two Institutes have taken under their wings. Maybe there’s a clue there.

Disorders

NIAID

HIV/AIDS, autoimmune diseases, pathogens (many), food-borne illnesses, Lyme disease, pelvic inflammatory disease, shingles, sinusitis, tuberculosis, scarlet fever, strep throat, smallpox, transplantation, vaccines.

NINDS

Acute Disseminated EncephalomyelitisADHDAlzheimer’s Disease
Amyotrophic Lateral Sclerosis (ALS)Arnold-Chiari MalformationAutismAutonomic DysfunctionChronic Orthostatic IntoleranceChronic PainComplex Regional Pain SyndromeCytomegalovirus , InfectionDysautonomiaEncephalitisEncephalopathyEpilepsyHerpes ZosterImmune-Mediated EncephalomyelitisMigraineMultiple SclerosisNarcolepsyPeripheral NeuropathyPostinfectious EncephalomyelitisPost-Polio Syndrome
Postural HypotensionPostural Orthostatic Tachycardia SyndromeSjögren’s SyndromeStiff-Person Syndrome

With dysautonomia/POTS, encephalomyelitis/encephalopathy, migraine and MS in NINDS I would trend slightly there but it’s a close call.

NIH home for ME/CFS

If you were to pick an Institute who would you pick?

There’s also some history to think of. Lipkin’s statement that Fauci would love to fund us is the first time I can remember anybody saying something positive about Fauci and ME/CFS. NIAIDS booted us out fifteen years ago because we didn’t fit their mandate.  Is the immune research done since enough to cause them to change their minds?

Fifteen years later there is still no focal point – no one system the research strongly points to – and therefore no clear fit as to an Institute.  The immune system is important but it’s not clear the answer lies there or any place else. Any Institute that takes us on will need to have research funded outside of its area of expertise.

This may not be so terrible as it sounds. Fifteen years later researchers recognize that many if not most disorders effect multiple systems.

If you could choose which Institute to move to which one would you pick?

Find A Home at the NIH

 

 

 

 

 

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