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.
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 Encephalomyelitis, ADHD, Alzheimer’s Disease
Amyotrophic Lateral Sclerosis (ALS), Arnold-Chiari Malformation, Autism, Autonomic Dysfunction, Chronic Orthostatic Intolerance, Chronic Pain, Complex Regional Pain Syndrome, Cytomegalovirus , Infection, Dysautonomia, Encephalitis, Encephalopathy, Epilepsy, Herpes Zoster, Immune-Mediated Encephalomyelitis, Migraine, Multiple Sclerosis, Narcolepsy, Peripheral Neuropathy, Postinfectious Encephalomyelitis, Post-Polio Syndrome
Postural Hypotension, Postural Orthostatic Tachycardia Syndrome, Sjögren’s Syndrome, Stiff-Person Syndrome
With dysautonomia/POTS, encephalomyelitis/encephalopathy, migraine and MS in NINDS I would trend slightly there but it’s a close call.
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
I’d like to say NINDS, but there seems to be an awful lot of competition there. I wonder how this would affect funding.
At the same time, we should also ask questions about why the Office Of Research For Women’s Health has such a small budget…
It always has had a small budget. It’s more a coordinating and promoting women’s health and research office than an Institute.
I’d like to know first who if anyone wants us? If any institute gets us against their will, we will be short-changed no matter what their specialty.
Another question is what specialty the majority of our experts practice? My experience is limited no doubt but I don’t know of any ME/CFS/SEID experts who’ve stuck their necks out for us other than infectious disease docs. I’m thinking we should consider going with the institute that has the most expert specialists to influence them.
If I had to pick now, I wouldn’t pick neurology. OI, POTS and autonomic dysfunction are handled by cardiology now. There is no care to speak of from neurologists for our cognitive dysfunction. So I’m thinking it is best to go where the interest is and where we are wanted. And where our experts would have the most influence.
Last question: Do we have any say or influence on the choice anyway? If I had to vote now, I’d go with NIAIDS.
I don’t know if OI, POTS and autonomic dysfunction are also handled by the heart institute but they come under NINDS purview as well. My guess is the most ME/CFS/SEID doctors are primary care followed by infectious disease docs. As to experts I imagine there are more infectious disease and immunologists but probably not a lot of them either!
I don’t think we have any influence at all. I’m sure there’s support out there we don’t know about but it’s probably an uphill battle to get into any Institute.
Neurologists haven’t seemed thrilled to take ME patients, but there are a lot of diseases listed as funded by NINDS that aren’t necessarily seen in neurology. So I could go with that.
Other possibilities are NIGMS (they take other cross-disciplinary diseases) and NIAIDS (usual placement of autoimmune and rheumatic diseases).
sorry I mean NIAMS is the usual placement of autoimmune diseases and musculoskeletal disorders and is another possible fit.
Yes, NIAMS has fibromyalgia, I believe.
Has CFSAC called for us to move to a specific institute, and if so, what? Wondering if it makes sense to get behind the same proposal.
I’ve seen somewhere (maybe here! just can’t remember) a suggestion that we ask for a new institute to be formed for multisystem disorders that can’t find a home (including GWI, FM, and I think Lyme, and some others that I can’t remember).
But our position has always been so weak that I don’t see it as likely that the NIH would create a new institute for us.
Or would they?
What about demanding that HHS solves this problem – present the arguments and get them to sort it out in such a way that we’re not in ORWH but in an appropriate institute with a budget appropriate to national disease burden and cost to the economy?
What do you think, Cort?
To my knowledge CFSAC has not asked. I agree – a new Institute focused on the so-called functional disorders – ME/CFS, FM, IBS, IC, GWI, Lyme, Chronic Pain and others makes sense – but it’s a huge task and all those disorders get little support.
I like the last idea 🙂
Thanks, Cort – I’m surprised that CFSAC hasn’t made a proposal about this (but I haven’t followed them closely).
I always felt me is à mutation of hiv.
Doesn’t the choice of institute have implications on the specialty of doctor we would have to go to to get treatment? As Willow mentioned, neurologists haven’t been willing to see CFS patients. My sister and I have seen half a dozen+ neurologists, over the years, but not for CFS. They seem to be more interested in eliminating people from their patient list than they are in helping. I think NIAMS – the autoimmune route, might be best. Esther has expressed some legitimate concerns. It would probably be best if we could go where we’re welcome, if there is such a place.
Kim & Kelly D
My hope is we have allies that we don’t know about…That certainly turned out to be true with the IOM and P2P reports. We need one Ron Davis with an very ill relative or somebody with a friend who lost it all due to ME/CFS in the right place to make something like this happen. Or we need some people who say “my god we can’t let a million people every year in the US suffer like this without doing something.
No one wants us. I believe we need to go where MS is because it seems they are also a Neuro-Immune disease and I think a new home has to be put together for Neuro-immune diseases. We are more than an immune disease and more than a neuro disease. At this time there is too much competition in both groups. There needs to be a new umbrella of diseases that they know exists.
I meant more than an infectious/immune disease and more than a neurologic disease. We are both as it starts with some sort of infection and it effects the neuro immune system. It really is a new field in my opinion and can most likely include MS and Lyme other neuro (central nervous system) illnesses caused by infection. There may also be a genetic component.
It is in the OWH in the Office of the Secretary of HHS, not the one you mentioned, Cort, but ORWH (Office of Research on Women’s Health) would also be a good place to be. We need research funding at NIH, and that most likely will come from ORWH (NIH) and the Trans-NIH Working Group, unless some other agency suddenly wants to adopt us.
I vote for NINDS.
As a Brit, I don’t really understand the US system of funding. However, looking at the above list of diseases, I’d go for NINDS. My reasons are as follows:
1) It’s important that the full neurological picture of ME/CFS is fully understood and researched in order to aid diagnosis and distinguish it adequately from diseases with similar symptoms. That’s only going to happen if it is taken seriously as a neurological disease. It’s precisely because hospital neurologists have been dismissive of ME/CFS that we need them to understand it better. And guess what research (if any) hospital neurologists will be reading up on? Neurological research…
2) Yes, ME/CFS has a strong immunological component, but that’s something that is being increasingly understood in other diseases too, such as MS and Alzheimer’s. There are all sorts of interesting overlaps in terms of immune function, nervous system damage, biochemistry and genetics. The role of vitamin D and B vitamins in all of this looks to me like an important area of research. The importance of these vitamins has shown up and continues to show up in the origin and development of diseases as diverse as MS, Alzheimer’s, Pernicious Anaemia, Coeliac disease, Thyroid disorders… All of which have both a neurological component and an immune component. That’s research that we need access to and we’re going to get it if we are grouped with some of those diseases.
3) Looking at the diseases listed under NIAID, they all seem to be diseases in which the infectious agent is known except the ‘autoimmune diseases’. Even in the case of the autoimmune diseases, the immune process is going to be well understood. They know precisely what the immune system is attacking and they can find the relevant antibodies in the blood. Neither scenario is true for ME/CFS. And, until it is, I suspect that NIAID is going to be unwilling to take ME/CFS on, because they will have no basis from which to start their research. I could be wrong. I’m no expert on these matters. But that’s how it looks to me from the information you have provided here.
At the end of the day, the way forward for medical research is multidisciplinary anyway. As with all institutions, it’s going to take time for the NIH to catch up with that in terms of its structure. Structures are always going to be the hardest things to change. However, *all* diseases are increasingly being understood as multisystem disorders, so I would expect more and more researchers to start talking to one another as time goes on. And that will only be to our advantage. So, in that sense, it doesn’t really matter where we are put!
I think it’s horrible that the ORWH has no funding for this disorder that strikes so many women!!