Fibromyalgia gets about double the funding of chronic fatigue syndrome, but of all the female-dominated chronic illnesses found in the NIH’s bottom forty in funding, only endometriosis gets lower funding per person (about $1/year). In fact, per person affected ME/CFS receives five times the funding as FM does. Relative to the economic losses and sheer amount of suffering caused by these diseases fibromyalgia may be the worst-funded disease at the NIH.
Why is fibromyalgia underperforming so dramatically at the NIH?
That’s puzzling. FM appears to have a lot going for it. It’s got three FDA-approved drugs, it’s “supported” by an Institute, it’s got a good name and, thanks to all the drug commercials, it’s got great name recognition. (The CDC has found that few people know about chronic fatigue syndrome.) Plus FM researchers have a central locus – the brain, FM is far more common than ME/CFS, and it tends to be less disabling.
So why with all these pluses is FM underperforming so badly at the NIH? That’s the question of this blog. An overview of fibromyalgias history at the NIH may provide some clues.
History
Fibromyalgia has a much longer history than ME/CFS in medicine, but it actually started behind at the NIH. According to Wikipedia, the first fibromyalgia study was published in 1981 and the first treatment trial occurred in 1986. In 1990 the American College of Rheumatology wrote the first diagnostic guidelines for the disorder. By 1993, however, the NIH was funding only four FM studies – compared to 19 for ME/CFS. (That’s actually considerably more than the NIH is funding today!)
According to the Fibromyalgia Network FM advocates got to work. The Network sponsored a scientist to submit testimony to the House and Senate regarding the urgent need for more funding. Over the next four years, representatives of the Network made numerous trips to lobby congressional members. Each year language was passed to urge the NIH to spend more money. In 1997 the Network began to directly target NIH officials in its lobbying efforts.
Advocacy efforts appear to have helped at one point.
By the end of the 1990s chronic fatigue syndrome had become the beneficiary of its own lobbying efforts and was in some ways appeared to be doing fairly well. It had its own special emphasis panel, a federal advisory committee, two federally funded research programs at the NIH and CDC, and three federally funded research centers.
The NIH appears to have responded to Fibromyalgia Network’s advocacy efforts. In 1996 it produced a Workshop on fibromyalgia. By 1998 NIAMS was funding eight FM studies; five on pathophysiology and three on behavioral aspects.
- INHIBITED FUNCTIONAL BRAIN ACTIVITY IN FIBROMYLAGIA
- FIBROMYALGIA–CENTRAL FACTORS IN ITS ETIOPATHOGENESIS
- REGULATION OF ADRENAL FUNCTION IN FIBROMYALGIA
- COGNITIVE AND NEUROCHEMICAL FUNCTION IN FIBROMYALGIA
- HPA AXIS DYSREGULATION IN FIBROMYALGIA
- SUBGROUPS OF FMS–SYMPTOMS, BELIEFS & TAILORED TREATMENT
- BEHAVIORAL TREATMENT OF FIBROMYALGIA
- SOCIAL SUPPORT/HEALTH CARE USE IN FIBROMYALGIA
In 1999, following a response that the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Director Katz called “overwhelming,” the NIH produced a $2.6 million RFA funding over a dozen new studies. Katz stated, “These new grants should help us make significant inroads into a disease that causes so much pain, suffering, and lost productivity in so many people.”
NIAMS lead the way. By 2000 the NIH was spending about $10 million on 36 FM studies and NIAMS was responsible for 20 of them. Fibromyalgia was being examined on a wide variety of topics most of which concerned pathophysiology.
The 2000 Katz Interview
By 2000 the FM was believed to affect 3.7 million Americans and was believed caused by central nervous system issues, musculoskeletal problems and/or an infection. In that year NIAMS director, Dr. Stephen Katz did an interview with a fibromyalgia group.
The interviewer noted – correctly – that the “The lion’s share of the fibromyalgia (FM) research supported by the federal government is funded by…. the NIH National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)”
Director Stephen Katz – NIAMS
The interviewer asked why we know so little about prevalence – why there are no FDA-approved drugs, and what can NIAMS do about that?
Katz simply cited a finding from a 1998 report and urged more “basic research” – a phrase that should strike fear into the hearts of any advocate. (When Institutes aren’t willing to fund your disease they’ll tell you all about the basic research they’re doing that will someday illuminate it.)
“We must continue to support basic research to uncover the fundamental mechanisms of disease as well as develop good animal models of disease”.
Katz then allied himself with FM patients and advocates by declaring he fully agrees with them on their needs. FM is a serious disorder, he acknowledged and we must do more. There is so much “we”, all of us, must do, he says.
“We must have clinical studies to improve our diagnostic and therapeutic approaches; we must support clinical trials to determine therapeutic efficacy; we must have epidemiologic studies to understand the way a disease affects the entire population; and ultimately, we must devise preventive strategies whenever possible.”
Note, however, that Katz never makes promises and never talks dollars and cents. If there’s a plan to move FM forward he doesn’t mention it – he simply asserts his commitment to helping out. .
The interviewer asks Katz what NIAMS can do to educate providers and others about the disease.
In a long answer, Katz cites a number of small programs (brochures, website) but is unable to say anything meaningful NIAMS will do to address the problem. A similar answer is given to a question about the need for more researchers and treatments. By then, Katz’s long boilerplate answers suggest that he was employing a bureaucratic technique of exhaustion by overwhelm. The interviewer, apparently glad to have any contact at all with the head of NIAMS, simply let it go by.
That was unfortunate. Little did the FM community know it had just hit its high point at the NIH. Everything was downhill from there.
2005
By 2005 NIAMS ‘commitment to FM has been cut in half. Instead of 20 studies, it was funding ten: six on pathophysiology and four on behavioral aspects. One interesting fact, though, for people with chronic fatigue syndrome (ME/CFS) who can’t get the NIH to fund any clinical trials. In the past fifteen years, NIAMS has funded at least three FM drug trials.
Ten Years Later
By 2014 NIAMS had cut its FM funding in half again. Now just $4 1/2 million is going to FM-specific projects. Plus the commitment to understanding FM has declined. Now it’s funding just five studies on FM, three on behavioral aspects, and another that involves cognition. The two biggest studies in 2014 are for a $683,000 Tai Chi study and a $612,000 placebo effect study. Note that none attempt to get at the biological roots of the disorder.
By 2015 NIAM’s FM portfolio is entirely behavioral. Even as more and more studies show central nervous system problems in FM, attempts to understand the pathophysiology of the disease at NIAMS have completely ceased.
Everything headed downhill after about 2000 for FM at the NIH. A review of the 2014 spending suggests it’s actually worse that.
Despite studies that have more than doubled FM’s prevalence (@$10 million) and show the disorder causes high economic losses (@20 billion dollars/year), NIAM’s commitment to FM has clearly declined considerably. It also appears to have decided that FM is either a behavioral disorder or is a disorder that can be treated sufficiently with behavioral techniques.
And Katz? Fifteen years later Katz is still there. He’s been director of NIAMS for 20 years. Fauci, the man who kicked ME/CFS out of NAIDS over fifteen years ago, is still there after 29 years.
Among NIH Institute Directors, Walter J. Koroshetz, M.D., the director of NINDS, is the odd man out. An public supporter of chronic fatigue syndrome, Koroshetz has kept the research going but has failed to provide the funds appropriate for the disease’s scope and prevalence.
Katz on Fibromyalgia Again
Fifteen years after NIAMS Director Katz did his 2000 interview with the FM group, he, the Deputy Director, and four other NIAM officials met with NFCPA officials to discuss what NIAMS was doing about FM. (Having a group like the NFCPA means you can at leat get your foot in the door from time to time.).
Fifteen years later we know that FM is almost three times as prevalent as was believed in 2000 and accounts for much high economic losses than suspected. What did Katz have to say about NIAMS and its dwindling FM research effort? The NFCPA reps reported that “Dr. Katz assured Jan and Rae that the NIH is funding fibromyalgia-specific scientific studies including one on cognitive behavior therapy and another on TENS therapy”.
How they were reassured by that is beyond me.
Advocacy Gap?
Why has NIAMS been allowed to do this? Why has there been no federal funding opportunity for FM in the last 15 years? Why has funding declined and why has the focus shifted so significantly to behavioral studies? Is anybody holding the NIAM’s feet to the fire?
I’m not up on FM advocacy, and I apologize if I’m missing something. In some important ways, FM advocacy in the United States is far ahead of ME/CFS advocacy. The National Fibromyalgia & Chronic Pain Association (NFCPA) reports it’s trained 175 advocates in their 1-3 day Leaders Against Pain intensive training programs since 2005. Nothing like that exists in the ME/CFS community.
I had a hard time, though, finding evidence of action on the federal front, The ME/CFS community may not have a full-time advocacy group but it regularly engages in short-term advocacy actions and Jen Brea and Beth Mazur’s #MEAction advocacy portal for the community suggests a new seriousness may be present in the ME/CFS community.
Some diseases have professional advocacy groups and others don’t. Whether a disease has one or not appears to be partly due to chance and the commitment of usually small numbers of people.
Migraine, for all its decades-long work to legitimize itself, for instance, did not have an advocacy group in place until 2012. When pressed by patients why the NIH wasn’t doing more on migraine one NIH official, with some exasperation asked why don’t you do something about it? According to the “Not Tonight” book, the creation of an advocacy migraine organization was primarily due to the work of one powerful person in the community.
Bright Spots
There are some bright spots. Pain research, for instance, prompted by a devastating 2011 IOM report on the gaps in pain research and management, has gotten a new emphasis at the NIH.
A Pain Consortium at the NIH was formed to support interagency pain research and the NIH began tracking pain research funding for the first time in 2011. In 2000 the NIH was reportedly spending about $75 million on pain research, this year they report they’re spending about $500 million dollars on it plus they’re spending about $400 million dollars on “chronic pain conditions”.
Eleven medical schools were designated Centers of Excellence in Pain Education (CoEPEs) in 2012. These schools are intended to act as “hubs for the development, evaluation, and distribution of pain management curriculum resources … to enhance and improve how health care professionals are taught about pain and its treatment.” Doctors associated with these Centers may be up on better ways to treat pain.
In 2015 the Interagency Research Pain Coordinating Committee produced a National Pain Strategy.
Effective Advocacy – The Missing Key?
As funding for pain research increased, funding for FM research, ironically, has declined. Advocacy appeared to pave the way for increased NIH activity in the late 1990s. The same was true earlier for ME/CFS.
The lesson may be that nothing can be taken for granted. The natural tendency may be funding for them to decline over time not increase. Both FM and ME/CFS have suffered significant declines in funding over time.
There’s probably a substantial “advocacy gap” in all these disease….what else is new?
ME/CFS and FM advocates may need to hold the NIH’s feet to the fire in a way that hasn’t happened before. For ME/CFS a national group – committed entirely to advocacy – that follows trends closely, produces grades, and advocates relentless for this community is probably a necessity. The same is probably true for FM
The NIH has repeatedly shown that it’s a world apart. While overall funding for the NIH doubled, funding for ME/CFS declined precipitously. Disease prevalence, economic losses, and unmet needs apparently mean little or nothing to the NIH. Even positive research findings appear to have little effect when ME/CFS and FM are concerned.
History suggests that consistent pressure from advocates and patients is required.
Thank you for this. I think there are a lot of components to moving the needle forward that all help: scientific breakthroughs, awareness, information, patient support, online advocacy, etc. – these are all very important.
But the longer I have been at this work, the more convinced I am that we cannot move forward unless we are playing a very good game on the Hill, in the media, and on the streets. We might get to $10 million without that, but certainly not to $100 million or $250 million – the investment I believe we need to have in order for me to see a meaningful impact in my lifetime.
I hope this starts an important conversation.
And the answer is not oodles of money or celebrity spokespeople or even healthy allies – I believe all that will come once we’ve gotten started. But we have to be the ones to lay the groundwork.
I agree completely. We may get increases – I would be astonished if we didn’t get SOME increase after the two reports – but we won’t get what this disease deserves nor will we be able to maintain it without consistent advocacy.
The only group in the past that did advocacy consistently was the CFIDS Association (Solve ME/CFS Initiative). In some ways they went it alone though. A organization that looks for volunteer support to produce reports and assist in advocacy could perhaps go further, much more cheaply…
We really need an organization that the NIH will respond to – a rigorous, “professional” organization that gives patients and volunteers the sense that they can trust it and rally behind it. An organization that when it goes to Washington it gets to meet with the Directors of Institutes and press its case; i.e. an organization with clout.
As I noted some disorders have them and some don’t. Whether they’re present or not seems to depend on someone willing to take the reins.. I was astonished the migraine didn’t have an advocacy group until 2012. (It’s funding still far too low – has nevertheless risen 30% in five years.)
I believe the ME/CFS community has to push hard for immediate gains but it also has to take a long term approach. It’s going to take time but given the lack of support we have at the NIH – I think a group like that is a necessity. The natural tendency for us at the NIH is for things to go south…
Both ME/CFS and FM have had their spurts of success – which over time faded. We have had some notable successes. ME/CFS is one of the only diseases to have its own federal advisory committee.. Without CFSAC I don’t know that either the IOM or P2P reports get done.
We have our own special emphasis panel for reviewing grants something else that’s really rare. We have “enemies” but we also have allies out there – allies we don’t even know about – who will, I believe pop out of the woodwork, to support us once they feel some trust.
We’ve got to be smart as well. In retrospect the efforts to derail the IOM and P2P report’s are not looking like great ideas – as a research community and as a patient community we’re clearly new at this – we need to learn and learn and be innovative.
It’s disgraceful that the NIH ignores disease burden and prevalence when it hands out the research money and relies on desperately sick and isolated people to advocate for it and to compete with other sick people.
What an appalling system.
But it’s the system we’ve got, and I agree that the US needs a national ME/CFS advocacy group that people can get behind.
Agreed – thankfully there is discussion about that now and the NIH is starting to take a look at that. It appears that it may be becoming a factor finally. How big of a factor I don’t know but in that discussion diseases like ME/CFS and FM and other common illnesses loom large.
Very informative Cort. I too am surprised at the migraine stat. I can’t help but think of something Oprah said at the end of her talk show. “Everyone wanted validation…They want to know: ‘Do you see me? Do you hear me? Does what I say mean anything to you?”
Lack of funding and initiatives to improve the welfare of millions isn’t doing that.
I appreciate the work you do to gather and bring us excellent information.
Thanks:)
Cort, thank you for this stark reality check. Unfortunately, most research on FM is by those with some secondary gain. Dr. Frederick Wolfe has not done the FM community any favors by inaccurately deeming his, et. al., criteria as the ACR criteria when it has not been approved by the ACR (who was to publish a erradum in their peer review journal Arthritis Care and Research). I personally held the moth to the flame on this one with the American College of Rheumatology because Dr. Wolfe continues to suggest that FM is a somatoform disorder in his interviews regarding his studies (and look at who funds them). This has done the FM community great harm.
We need physicians and scientists to embrace Dr. Robert Bennett’s criteria in which he and his colleagues found that FM is accompanied by some type of other painful disorder.
The more comorbid disorders one person has, the more difficult it is to manage the pain amplification of FM successfully. I happen to be one of those people. I also have ME/CFS, Hashimoto’s, chronic migraine, MPS, IC, and IBS. It is these things that make it difficult and more severe than some with FM might experience. And let me say, aging and other co-existing pain problems doesn’t help.
I have always believed (after hundreds upon hundreds of literature reviews for the big book) that this lack of orchestration in the brain, particularly the HPA axis plays a huge role. It’s rather like, if mama isn’t happy (the HPA axis) ain’t nobody going to be happy. Research continues to point in the direction of brain messaging and orchestration dysfunction, so why aren’t scientist focusing in this direction? LACK OF FUNDING! I do believe that if we can find the right treatments, if FM is diagnosed early, we might be able to keep neuroplasticity at bay, but we need the information.
Fibromyalgia is no laughing matter. Unless one has experienced the unrelenting 24/7 pain, fatigue, and cognitive dysfunction, nights of sleep that bring no rest to the brain, they cannot possibly understand. For me, it is my constant and ME/CFS comes in flares. I cannot say which is worse, they are both horrible. So is chronic migraine (the most debilitating for me), and feeling like one always has a UTI, cannot have relations with their partner without excruciating pain, and inability to control one’s bowels, even in a public place, should be sufficient evidence that WE NEED TO KNOW! I hear that FM plays a role in all these things, so why shouldn’t someone either prove it or disprove it? It’s not just fibro.
The NFMCPA is doing great work on Capitol Hill. Jan Chambers and I have known each other for a while now. I met her in person at Pain Action Alliance to Implement a National Strategy meeting a few years ago. She and her organization are also on the steering committee for PAINS. She attends the ACR meetings, P2P on chronic pain, meetings on Capitol Hill for PAINS and much, much more. We need to support the NFMCPA. It takes money, THAT is the bottom line. A good friend of mine, Melissa Swanson is one of the NFMCPA Leaders against pain. I am so happy to say that I have been mentoring her. I always told her one day I would be coming to her for information. She recently flew to Boston to do an interview with NFL Super Bowl player, Dominique Easley who is a champion for raising awareness and funding for research to help his sister Destinee who was diagnosed at age 11 with FM, and all the others of us who suffer this debilitating disorder. Hopefully, this will be a sign of times to come for the NIH to get off their behind and put some money where their mouth used to be.
Thanks Celeste,
When it rains sometimes it pours – those are a lot of conditions to deal with! I think you must be right about getting at it early before the problems permutate across the body. Thanks for mentioning the Pain Action Alliance – the movement on the pain front is encouraging. Those IOM reports can really work! 🙂
It’s confusing and disappointing to see fibromyalgia – which has been called the quintessential pain syndrome – losing its way in NIAMS with renewed emphasis on pain at the NIH. FM research should be leading the way in our understanding of chronic pain not the other way around. It shows what a complicated place the NIH is: one part can be moving forward while the other is regressing.
For the NFMCPA – they did note they were concerned about the funding situation and they did exhort the director to spend more and I think the situation over at NIAMS has gotten very bad indeed. I hope NFMCPA are pressing them as hard as they can and communicating that situation to their members. I acknowledge that advocating for a disorder is not easy particularly for small organizations. We all need to support our organizations more.
Absolutely Cort. Marly Silverman and I did an article together expressing our concern over the World Health Organization and the ICD codes, which not only affect insurance reimbursement for diagnosis, but also serve to collect data. Our biggest concern has been and bears out with time, that both ME/CFS and FM will be reclassified at the NIH. I suppose we can be grateful they still fall under NIAMS instead of the NIMH (mental health), but that seems to be inconsequential if we don’t get them to pay attention.
Yes, I deal with a lot and have most of my life, but not as much as some others. It is because of the personal experiences we have that we can advocate. We have walked in the shoes of the many who try to cope daily. I am very lucky that I have a medical background and I am able to employ healthy coping strategies. It doesn’t change my conditions, but it sure helps me mentally and spiritually. I really feel pretty well rounded and balanced despite the obstacles. When we think about it, everyone has some adversity in their life, but not everyone has a community to work things through like we do.
TY for staying on top of this. You are right, in the National Pain Strategy, which PAINS played a role, fibromyalgia is revealed as one of the most prevalent pain conditions. My only concerns were some of the rhetoric, such as referring to Dr. Wolfe’s coined term “fibromyalgianess.” You can bet they got a thorough reply from me when asking for comments. If that isn’t a stigmatizing term to use, I sure don’t know what is.
I think that the problem lies in the patient themselves. FM is a tricky disease. The problem is that the definition varies so widely from one person to the next. Personally, I define Fibro as an all over achy feeling that consists of fatigue, widespread pain, with 18 tender points. When someone else comes along they add in bladder issues, pain in their foot, stomach issues, headaches. Then the definition gets turned into something else entirely. If the focus becomes on people talking about just Fibro pain and not everything else, I feel that there would be better funding because FM, itself, would be more definitive to look at.
I agree that that’s a problem and it’s a problem for ME/CFS as well AND I think the fact that it is still an issue 25 or 30 years later reflects the fact that the NIH is not committed to resolving it or working on FM.
The NIH is working on many complex diseases that have many terribly complicated problems. It’s well within their capability to create a good definition for FM and then probably create subgroups of FM patients within that broader grouping.
So I bring it back to a lack of commitment on the NIH’s part.
I think Cort got right to to the point when he said advocacy for certain diseases is surprising and often is the result of a small group of committed individuals knowing what to do.
I have Crohn’s disease (in a miraculous remission.) When I was dx in ’65 I had rare hemorrhagic onset and after having my blood supply replaced twice had emergency surgery. I lost my terminal ileum and my pathology slides were positive and the report showed considerable morbidity. I was told it was a psychiatric disorder that involved a dependent mother! There was so much mythology about ulcerative colitis and Crohn’s disease that the psych element pushed people into the closet as much as the bowel function element.
A few years later a small group of very wealthy families and THEIR DOCTORS formed what is now the Crohn’s & Colitis Foundation of America. I met some of the charter members when I worked for the Boston Chapter. They were parents watching their children die; ironically they became wealthy later (and knew how to fund raise.)
When I tell young doctors that Crohn’s was considered a psych disease in ’65 they don’t believe me.I was told by one of the founders that they spent four years JUST dispelling the mythology. People were dying during this time but this group felt the mythology had to go. There was very minimal research.
I was also told that what was the end to that four years was an international conference formed by the first doctors involved. They were all academics with strong hospital affiliations who were savvy at getting grants. One was my second gastroenterologist, who in ’67 told me it was not a psych disease. My new internist still thought it was but this time I was told I couldn’t handle loss. My brother had just died so this was convenient.
Patients were not in the seminal advocacy group. They were simply too sick. Since it strikes children,many were too young.
It took a long time for this group to be recognized. But when Marvin Bush, the youngest of the Bush clan, got fulminating ulcerative colitis and nearly died, Barbara Bush called the Foundation. And sent a camera ready photo done by the White House photographer and O.K.d copy for media.
I didn’t mean to tell a story of how one disease gets funding, etc. but to show how an aggressive effort by a small group worked. The ads you see on TV are paid for by the biologic pharmaceuticals used for Crohn’s.
My FMS is minimal; I have CFS and a lot of the things that go with it.
I was dx with FMS long before CFS. It accompanies Crohn’s. It was so long ago it was called fibrositis. So FM was around over thirty five years ago, but FMS was not recognized.
Thanks Barbara – it’s very illuminating to hear how these things get started. The best use of someone’s money right now might very well be to put into aggressive advocacy and lobbying to get the NIH to open their coffers. The NIH with it’s $30 billion dollar budget is a gold mine – if you can get in.
That effort worked – Crohn’s disease gets $67 million a year from the NIH…
That took almost fifty years to happen.In 1965 there was no money spent on research. Why bother when everyone just needs a shrink!
A resident was telling me I must have an overly dependent mother who caused me to get sick not realizing she was standing behind him. This was the woman who refused to put her own mother in a nursing home to die in 1942 when my grandmother was dx with ulcerative colitis. I was afraid she’d attack him with a scissors but instead she told him everything she knew about Crohn’s disease. Much more than he did.
Initially the organization put it’s funds into seed money for research. Grants were carefully chosen and given to promising researchers with hopes they’d stay in the field. They were mentored by the doctors who volunteered their time. Then when initial research looked promising, researchers applied to NIH.
The doctors’ initial involvement had much to do with the success; it truly was doctors working with patients. And because of the caliber of physician, new doctors volunteered. The head of gastroenterology at Mass General, one of the early medical volunteers, insisted his fellows volunteer. It started with about five doctors and twenty five volunteers. Most of the volunteers were very wealthy. I suspect their doctors recruited them. People were desperate, which made it easier.
Still, Crohn’s and ulcerative colitis can be harrowing diseases. Infusion treatment is very difficult and has frightening side effects. One of my doctor’s bil’s died because of liver failure from the med he was on (methotrexate.).
The push now is for a cure. Genes have been found but no one knows the trigger. Like CFS, it puts one at risk for many other illness’s.
There is probably a connection to CFS for some. When I got interstitial cystitis (before I got CFS) a researcher begged me to be in his study. The highest incidence of interstitial cystitis was seen with Crohn’s. I have Sjogren’s secondary to Crohn’s.Sjogren’s is another illness seen with CFS. So maybe some of that Crohn’s research will help CFS.
I am really surprised by so little funding for emphysema. Everyone who smokes does not get lung cancer, but does get emphysema.
AIDS was the ultimate advocacy group. The breast cancer women learned from them.
One area of research funding I’m curious about is private donations. The U.S. is one of the richest countries in the world, where the richest 1% own more than 40% of the nation’s wealth.
If there are 300.000 people with ME/CFS in the U.S., there must be at least 3.000 of the “one-percent” who have ME/CFS. These should be able to fund $200 000 000 of ME/CFS research per year with their spare change. The one-percent probably also have one-percent siblings and parents who might also be interested in funding the research if they learn how much their family member is suffering and how little funding the illness gets.
I wonder if people might feel paralyzed because ME/CFS seems like such a complex illness. Hopefully the hugely successful Rituximab studies in Norway will cause that paralysis to drop away.
I really appreciate your articles on funding, as they seem to go to the heart of the matter.
I did met a venture capitalist whose daughter – a very high achiever – like yourself – who has a horrible case of ME/CFS.
Other than that guy who I don’t know – you’re the only person in top 1 percent I know (:))
But honestly, what a great insight that is and it provides hope. If you include their family members and close friends statistics suggests there must be many people with ME/CFS with connections to them…That is fascinating
I met the 1% when I worked for the Crohn’s & Colitis Foundation. One was an initial founder who’s husband became enormously wealthy. And he tapped on his old buddies like Marvin Adelson.
Wealthy people have to be convinced that their money is going to be used properly. I took certain people to lunch to explain a grant that was promising but needed money. Then they met with a board member who would explain how the organization worked. Most knew a doctor involved. Trust me, that respectability was worth millions. We don’t have that vehicle. Non profit status is crucial for a tax deduction.
Also, there’s a lot of competition for that money from the 1%. When I worked for the Foundation it was AIDS. Now I suspect it’s Alzheimer’s. You have no idea how many $5,000 a seat and up formal balls there are.
Cort, I spoke to a seriously ill woman with Crohn’s for months and had no idea she was a 1% heiress who kept a large horse farm in Kentucky. She didn’t look like money. She was in Boston because she followed her doctor here. It was the wife of the owner of Filene’s Basement who cornered her at the beauty salon they both went to. But it was a lost cause because she was against animals being used in research and we did.
The 1% are out there. But we need a small aggressive number to start something they trust. And they have to be good at fundraising so they can get money from their 1% friends, who already gave a lot to Alzheimer’s. Fundraising is an art that has to be seen to be understood.
There are plenty of NIH funded projects that accomplish little, could be terminated, and the money used for FM and CFS research. For example, there have been studies for 20-30 years on the effects of cocaine and heroin on monkeys. Aside from the horrible effects on the monkey subjects, what important new information can possibly be learned after 20 years of research? As another example, there have been studies for over 30 years on the effects on monkeys of their being removed from their mothers and other monkeys right after birth? Again, this is cruel research that can’t possibly still be producing worthwhile information.
Great article and wonderful to see so many informed comments here. I have learnt a lot from your post and appreciate you sharing it at Fibro Friday.