The cause of chronic fatigue syndrome’s decades long funding problems have prompted much speculation and finger-pointing. If only the CDC had taken the Incline Village outbreak seriously, or if Stephen Strauss had never showed up at the NIH, or if Bill Reeves hadn’t take over the CDC or if Fauci, for god sakes, hadn’t lead the NIAID for the last couple decades – then things would be different. If only we’d had a good definition, an FDA approved drug, or top researchers then things would have changed. Then we would be doing well.
I submit that these are all symptoms of the problem – not the problem. I assert that even if we had a better name, better leaders at the federal level, FDA approved drugs, better researchers, etc. we would still be facing a low funding ceiling – perhaps not as low – but still too low. I suggest that absent fixing a crucial problem, ME/CFS and FM have, from the beginning been essentially doomed to poor funding.
First let’s look at some of the proposed causes for chronic fatigue syndrome’s funding problem.
The Lousy Name
Chronic fatigue syndrome is a horrible name to give to such a debilitating disorder. In fact it’s easily the worst name of the 244 diseases and conditions that are tracked by NIH. No other disease name is even close. A look at the other disorders that get poor funding indicates, however, that a good name is not a guarantee of good funding. fibromyalgia, interstitial cystitis and migraine, after all, all have “good names” yet all get lousy funding.
Per person fibromyalgia actually receives significantly worse funding than ME/CFS. If you throw the ME/CFS funding from the CDC into the pot (FM receives no funding from the CDC), ME/CFS gets about nine times as much more funding per person from the federal government than fibromyalgia does – and it’s got a lousy name.
The name has hurt will help but getting a better name for chronic fatigue syndrome is no guarantee of better funding.
The Poor Definition
A rather vague definition (Fukuda) that allows some people who do not have ME/CFS into research studies has undoubtedly impaired research efforts – and ultimately funding. A better definition should allow studies to produce better results and that will help, but it’s not the main reason for ME/CFS and FM’s funding problems.
The fact is that success does not necessarily breed success in ME/CFS. Natural killer cell dysfunction, metabolic dysfunction during exercise and autonomic nervous system problems have all been consistently found in ME/CFS yet have received paltry funding relative to hot topics in other disorders. Neurological research studies suggesting poor motor activation in the brain, altered pathway activity, and others have never or only shoddily been followed up on. The startling Rituximab results made no difference in the U.S.
Similarly, the many, many abnormal brain findings in fibromyalgia have not lead to an increased funding for it.
The definition and its effects on the research are a problem but they’re not the problem. In fact, I assert that if we’d fixed our crucial problem we would have had a good definition years ago. The fact that we’ve had to live with a poor definition for many years is simply a symptom of the bigger problem.
The Lack of Top Researchers and The Few Grant Proposals
The NIH has asserted for years that if they would only get good grant proposals from good researchers they would fund them. Let’s be clear – the NIH is not being flooded with good ME/CFS research grant proposals – and that’s a problem. But even renowned researchers such as Ian Lipkin and Ron Davis have gotten their grant proposals rejected (twice). It turns out that big name researchers writing good proposals face many of the same issues others have faced. Better researchers will probably be more successful, but they are no guarantee of significantly better funding.
The NIH has known for decades that low rates of grant proposals are a major problem. It knows that even a small Request for Applications (RFA) grant for ME/CFS would receive many grant proposals (a similar RFA ten years ago did.) yet it does nothing. Why it does nothing when an obvious and not particularly expensive solution is in sight is the real issue. The fact that it hasn’t is simply indicative of the crucial problem we have not surmounted.
No FDA Approved Drugs
Advocates often assert that getting a drug approved for ME/CFS will help legitimize the disease and result in increased funding. Having an approved drug may very well result in increased funding and would certainly help legitimize the disease, but will almost certainly not of itself lead to the kind of funding breakthrough ME/CFS patients wish for. Why do we know that? Because fibromyalgia has three FDA approved drugs and migraine has seven and both still get poor funding.
Getting an FDA approved drug would be great and could lead to increased funding but it will not lead to the breakthrough in funding that we wish for.
The Broken Funding Mechanism
It’s true that the infrastructure problems alone almost completely prevent ME/CFS from getting sufficient funding. Funding for ME/CFS can come in three ways
- the Institutes in the Trans NIH Working Group can band together to fund a disease none of them has responsibility for.
- the small Office for Research on Women’s Health (ORWH) can provide funding out of its meager budget.
- the Office of the Director can step in and providing funding.
Over the past fifteen years only one of those potential sources of funding – the smallest one – the ORWH, has provided any funding for ME/CFS.
The proposed solution to the infrastructure problem is to have an Institute take ME/CFS under its wing. But fibromyalgia, migraine and interstitial cystitis are all under an Institute’s wing – and all still get poor funding.
Getting into an Institute is probably a necessity for ME/CFS, but it is no guarantee of dramatically increased funding.
The underpowered name, the vague definition, the broken funding mechanism, the lack of FDA approved drugs, the inconsistent study results, the unfortunate leaders, the lack of major researchers…they’ve all contributed to the funding problems in ME/CFS, but I assert they are all symptoms of the problem, not the cause. I assert that, absent fixing our crucial problem, that even solid advocates at top positions in the federal government would have had trouble getting us far.
Why do I think that? For one, because migraine has a good name, it’s centered in the right Institute, it has several drugs approved for it, it’s well-defined, pathophysiological disorder that has good researchers associated with it and it still gets lousy funding.
Something deeper is going on – the fixing of which is critical – and which would clear the way for abundant funding. Not fixing this issue, on the other hand, will guarantee that, whatever increases in funding occur, ME/CFS will probably keep on in its petty funding pace. It will always, like migraine, have a low funding ceiling relative to other major disorders.
- Part II – The NIH’s Blindspot” the Real Reason Chronic Fatigue Syndrome and Fibromyalgia Stinks – Conclusion
Register for our free ME/CFS, fibromyalgia, and long COVID blogs here.