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ME/CFS Rears Its Head Again

A commitment to social justice runs in Carol Head’s blood. She founded a non-profit which has given away millions to support entrepreneurs who work on global poverty, and was a founding board member of another non-profit that tells the stories of marginalized women’s lives.

Her work with Solve ME was in some ways just an extension – albeit a remarkably personal one, given her experience with ME/CFS – of the work she’d been doing her entire career. When she took the job leading Solve ME in 2013, she told the Board of Directors of her past with the disease.

Carol must have known that she was taking a risk. She was stepping into an all-consuming job in a field she had a special passion for. Being the CEO of Solve ME wasn’t going to be just any job; it was going to be a job that she’d be inclined to work extra hard in – harder perhaps than she should have.

Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I

Whether or not Carol pushed too hard or it was simply time for that other shoe to finally drop, it did. After being quiescent for years, ME/CFS reared its head again about two years ago. Over the last 18 months, she’s done nothing but work and sleep, work and sleep, and now even that isn’t working. It was time to let the job go.

Carol Head Announces She’ll Be Stepping Down as CEO of Solve ME

 

Stress, she thinks, was probably a factor.  Leading an organization in a volatile field is never easy – she knows – she’s led dot.com organizations – and leading Solve ME, with the many challenges facing this field, was like that. She stepped down a couple of weeks ago – she’s now a member of the Board – and the hunt is on for the third CEO of Solve ME.

The National Institutes of Health (NIH)

My first question for Carol in our interview in her last days as CEO was about the NIH and that big, big bundle of money up in Maryland that we just never seem to be able to get our hands on.

I wanted to get as inside a story as possible about dealing with this supremely frustrating federal agency. Every year the NIH gives out tens of billions of dollars in research grants and each year only the smallest percentage goes to ME/CFS researchers – a percentage not in any way commensurate with this disease’s numbers (@ 1,000,000 people) or economic impact (@ $20 billion/yr economic losses).

It’s true that ME/CFS researchers rarely actually apply for grants, but the NIH has an easy way to remedy that – provide prepackaged grant funding opportunities (RFA’s). Aside from the recent NIH funded ME/CFS research centers and the Intramural study which are a drop in the bucket of what’s needed – the NIH has done very little.

I particularly wanted to ask Carol, because as the leader of Solve ME, the NIH will take her phone calls. Plus, she was a member of the federal advisory committee on CFS (CFSAC) for several years and served on the current NINDS NIH ME/CFS working group.

She told me she recognized early on that if we were going to get the dollars needed to solve this disease, the NIH needed to vastly increase its support for ME/CFS. She quipped, “Just as when the gangster Willie Sutton was asked why he robbed banks, he said ’because that’s where the money is’ – so the big basket of money at the NIH required she learn “how they operate, how they think, and what their perceptions are”.

The bitterness the ME/CFS community exhibited towards the NIH was no surprise to her – she’d felt it herself. She’d found herself waking up in the middle of the night wanting to scream with anger at the NIH. She was, at times, shocked at the cold, clinical responses the federal ex-officios would give to the often-heartrending stories presented to them at the CFSAC meetings.

Cognitive Dissonance

But during her informal talks with those ex-officios, a different picture of them emerged. To her surprise, she generally found them to be smart, caring individuals who had thought deeply about the issues facing the NIH and ME/CFS. The cognitive dissonance between the NIH’s response to ME and the patient community she experienced was shocking.

Over time it became clear to her that the ME/CFS community and the NIH have been completely talking past each other. She concluded that the ME/CFS community and the NIH officials come from two such different contexts that they often can’t even hear each other.

She remembered, early in her tenure on CFSAC, throwing away her prepared comments and simply stating that ME is an unusual disease which clearly does not fit into the NIH’s way of operating. She described ME as a square peg in a round hole. Mirroring the thoughts of all of us, she said that surely the caring individuals at NIH would find a way – and do what they have to do to support this disease. To not do so, to her mind, was unfathomable. That didn’t happen.

NIH expectations ME/CFS

The gulf between what we expect of the NH and what we get is enormous.

She realized that the NIH uses a slow, methodical process that relies on a highly structured, time-tested manner of distributing funds to disease research. That approach has benefited millions but to people with ME/CFS, that slow methodical pace seems like dishonest stonewalling. To the NIH, it seems like prudent, caring stewardship of taxpayer dollars. Both the below statements, Carol said, are true in her experience:

  •  The NIH is unconscionably, immorally slow in supporting ME.
  • The NIH is working unusually quickly to support work in ME.

To us the pace is maddeningly slow: to them – adding three research centers, an intramural study and a two-day ME conference – it was moving very quickly in such a small field.

(While the NIH is spending very little on ME/CFS relative to its needs, an examination of past NIH funding found only one disease in the past five years – a small one – which proportionately received as big a bump in funding as ME/CFS did. It does appear to be quite rare for a disease’s funding to double in a short time.)

Carol said “I know I’ll be vilified for saying this, but this is the truth that I’ve seen.” Carol concluded that the NIH simply was NOT going to voluntarily change in the ways we needed it to to. Another approach was needed.

Interlude from Cort – Reflections on a Free Market NIH

Carol’s statement made sense to me. For over a decade, I’ve been hammering the NIH for their unconscionable neglect. I’d concluded that the NIH was an evil, morally bankrupt institution. Given their neglect of so many ill people over the decades – including myself, at the end of my fourth decade with ME/CFS – I didn’t see how else to view them.

After more thought, though, I concluded that the NIH is morally bankrupt – but not because it’s evil – but because morality gets no say at the NIH.  Unmet needs mean NOTHING to the NIH. Suffering doesn’t compute either, and don’t even think about bringing fairness into the equation: you might as well be speaking Latin for all the agency cares about fairness.

The NIH is also not, surprisingly enough, dedicated to answering the health needs of the nation. The NIH has NO regulatory system designed to ferret out and fix research funding inequities or to assess health needs. Nothing in the grant review process gives diseases with more needs a leg up. There’s no year-end review of funding priorities which identifies neglected disease areas which should get a funding boost.

The NIH’s main focus is simply to support medical research – or more accurately – medical researchers. In doing so, it’s embraced a laissez-faire, free-market Adam Smith-like notion that the invisible hand of the medical research field will take care of all. The NIH is simply there to institute rigor into the funding process.

Neglected diseases NIH me/cfs

Don’t even think about it! The NIH has NO processes designed to give neglected diseases a leg up.

Several problems with this exist. For one, medical researchers don’t exactly have the health needs of the nation in mind. Their most immediate priorities include having a successful career, being intellectually stimulated, gaining their peers’ and their mentors’ approval, etc.

Plus, just like the monopolies of the past or the big businesses of the present – any disease that gets “in” automatically has an edge. It has more allies, more laboratories, better equipment, can offer researchers more cutting-edge opportunities, etc. than diseases on the fringes. Its grant applications will be reviewed by a panel more amenable to pushing them through. Since the NIH largely works by peer review, it is susceptible to being captured by buddy-buddy networks.

Diseases like ME/CFS, fibromyalgia and migraine – diseases which affect millions and millions of people, cause enormous amounts of suffering and cause huge economic losses, but haven’t built that kind of infrastructure – get shut out.

If this analysis is correct, this kind of lassez-faire approach to medical research means that even people like Francis Collins, the head of the NIH, don’t, by themselves, have the kind impact we might think they would have. Since the NIH is more of a facilitator than a leader, Collins’s power may lie in his power to persuade.

Collins has helped, but what apparently can’t do is persuade his fellow researchers to really fund this disease. The Trans-NIH Working Group – the group that holds the purse strings for ME/CFS – responded to Collins’s promise that the NIH was turning over a new leaf on ME/CFS – by not turning over any leaves at all. It simply bumped it up to more or less the same pitiful levels it had been in the past.

For all of Collins’s and Koroshetz’s public statements, for all the publicity the IOM report received – the Working Group provided no more money for ME/CFS than it had ten years earlier when Vivian Pinn of the little Office of Research on Women’s Health (in which ME/CFS was then embedded) pushed for more funding.

The Lie in the NIH’s “Accelerating Research on ME/CFS” Slogan

In other words – the Institutes haven’t come around at all, and Collins and Koroshetz are facing an environment that is still hostile to ME/CFS. Don’t think it’s just ME/CFS, though. The NIH is built to keep diseases like ME/CFS – diseases without a strong constituency – from moving up. In fact, the NIH makes it difficult for any disease to move up quickly. The vast majority of diseases experience a slow but steady accretion of funding over time.

Big boosts in funding do happen, but they take an extraordinary effort which involves some sort of coalition coalescing around a major theme such as the Brain Initiative. That Initiative – which is managed by no less than 10 Institutes – has brought an extra billion dollars into brain research over the past 5 years. (Many of the diseases receiving substantial recent funding increases (aging, Alzheimer’s, brain disorders, neurodegenerative, neurosciences) have to do with the brain. Note that some brain diseases (Alzheimer’s) got huge boosts while others (MS, Parkinson’s) didn’t get any increases.)

The NIH has put checks in place to ensure that the agency acts conservatively. If a member of the Trans-NIH Working Group wants funding for an ME/CFS Research Center, the fate of that request lies in the hands of another panel – which obviously has much less understanding or interest in ME/CFS. Plus, the request is probably being made by a member who – because we’re way down on the food chain – doesn’t have much pull to begin with.

Similarly, the fate of NINDS’s task force recommendations for ME/CFS will be decided by another review panel – none of whose members have a stake in this disease. We’ll see how that goes this fall.

Because the NIH doesn’t operate via fiat (e.g. Francis Collins does not wave a magic wand) – and hasn’t in almost 130 years created any mechanisms to address funding inequities – in order to succeed, we need to establish allies up and down the chain of command; from the individual researchers submitting grants; to the grant review committees; to the institutional leaders making the final decisions.

This is not to say that diseases can’t and haven’t come in from the cold. They have, and ME/CFS is in the process of doing that. Note that from 2000 to 2010 the NIH did two big things for ME/CFS: they funded a conference and an RFA. From 2010 to 2019 the NIH has thus far done 5 big things: they funded an ME conference, an RFA (3 research centers), a large Intramural study, the IOM report and the Pathways to Prevention report. This fall, NINDS is going to have the opportunity to do another big thing when the NINDS ME/CFS report is delivered to the NINDS Council for consideration.

The good news is that we do have more allies such as Vicky Whittemore, Walter Koroshetz and Francis Collins. The bad news is that getting fully integrated into the NIH is clearly a long-term project.

Carol Head, though, felt we had reasons to be optimistic about the future.

Carol Head on a Hopeful Future

At the same time Carol Head refused to cast the NIH as an evil monster, she recognized that something more than simply yelling at the NIH from the bleachers had to be done.

The NIH had to be gotten at in other ways. They included: 1) funding more seed grants with the Solve ME Ramsay programs; 2) pushing for non-researcher projects (e.g. the national ME conference); and 3) going to the one institution which could make the NIH change its ways: Congress.

If NIH is structured to ignore medical research inequities, Congress is tasked with ensuring that the government meets the needs of the people. Since Congress holds the purse strings and the NIH was clearly not fulfilling our needs – and was not going to anytime soon – Congress was the place to go. Congress is the only place that could force the NIH to quickly change its ways.

That required, though, not just reviving Solve ME’s moribund advocacy program but boosting it to levels never seen before. When Carol became President in 2013, Solve ME was purely a research organization. Recognizing that ME/CFS research was never going to progress at the NIH on any kind of satisfactory timeline, she pivoted.

She brought Emily Taylor, and her five-year plan to force change at the NIH, before Solve ME’s Board of Directors. While the board was at first shocked to see such an ambitious long-term plan, Carol, Emily and the Board ultimately became aligned: Solve ME would put a significant portion of its meager resources into advocacy again, but this time it would go for the gusto: a long-term project to create legislation to force the NIH (and also the Department of Defense) to devote more dollars to ME/CFS. In doing so, it became the first U.S. organization I’m aware of to hire a full-time professional advocate for ME/CFS. (Now in year three of the five-year plan, Carol said they were on track.)

A Professional Advocate for ME/CFS (Finally!) – the SMCI’s Emily Taylor

Carol stood up at the recent NIH conference and said that while she fully expected the NIH to come around, that it was going to take time. We’re not going to get $100 million this year or the next, but the NIH was going to turn. Could we get it by 2025? She said yes. I asked her why, after the decades of pounding our heads against the wall, she believes the NIH could come around so quickly.

She said that, for one, we’re a lot stronger than we’ve ever been. In the last couple of years, at least three highly capable U.S. organizations (Solve ME, the Open Medicine Foundation, ME Action) run by smart, determined people have cropped up. Plus, one state organization (Mass ME/CFS Association) has shown how powerful state organizations can be.

More has been done in the past four years than in the past forty; i.e.; the trajectory is good! If the flywheel of progress isn’t spinning as quickly as we would like, it is spinning now and it’s spinning faster than it has ever before. Momentum and centrifugal force – once you get them moving are powerful things.

Carol Head’s Lifelong Focus on Social Justice Culminated in Her Work on ME/CFS

Plus, to put it very simply, our cause is just. So long as we are smart and savvy and keep at it, we will prevail. Part of that includes consciously broadening our reach and creating new allies. For its part, Solve ME now has formal relationships with the National Organization for Women, the Invisible Diseases group, Women’s Health Equity Movement, The National Health Council and five others. Some of those organizations actually initially balked at becoming affiliated with an illness group with such a negative reputation (!). (Is our rep that bad? Apparently so!)

The ME/CFS community’s reputation – mostly not deserved but bad news does travel fastest and furthest of being an angry, difficult-to-deal-with community, has gotten in the way. So have doctors who don’t think the disease is real, and the public who still thinks of ME/CFS as “just” fatigue. The slow progress in understanding the disorder, the many ignorant doctors (the last to get the word apparently), it all comes into play.

That rep, in turn, affects family members, friends, supporters – the kind of people helping to lead the fight in other diseases. The lack of support from the healthy has been a long-term problem for ME/CFS, and Carol has seen it first-hand.

Carol said she has watched virtually every new Solve ME board member go through a humbling experience. The Solve ME board, she said, is composed of highly capable, successful, professional individuals who tend to have friends with resources; people who could contribute really significant amounts to this disease – but it just doesn’t happen. The Board members go to their friends with high expectations – they pour their hearts out – and they expect a response which just doesn’t come – not yet.

Carol said that almost all Solve ME’s funding still comes from someone who’s directly associated with someone who has the disease: spouses and parents – usually someone who’s actually living with someone with ME/CFS. Get beyond that intimate connection, and it’s rare for someone to step forward. People who will contribute to $100 million campaigns to raise awareness for breast cancer (as if everyone’s not abundantly aware of breast cancer!) still will not give to ME/CFS.

That same scenario extends, she said, to Solve ME’s Board of Directors. Everyone on the Solve ME Board has ME or a very close family member with ME – not because Solve ME wanted it that way, but because people without an ME connection just haven’t been able to hack it. Without that fire in the belly that comes from caring for a loved one with ME, the job is just too much; too complex, too controversial and not prestigious enough. None of the people without a close ME connection has lasted on the board more than six months.

From what Carol said, it was clear we have some issues to deal with – some ideas about ME/CFS that have to change. The flip side of that is that changing those ideas will unleash vastly more support. The fact that Tony Komaroff’s article on ME/CFS in JAMA is clearly going to be one of the ten most viewed JAMA articles of this year demonstrates how much more interest there is in this disease than before. We’re sitting on a huge and mostly untapped potential resource.

Carol believes there’s too much energy, too much passion, too many good ideas for this field not to succeed.

After Carol – Solve ME’s Next Leader

Carol reported she’s leaving Solve ME in financially good shape with a Board of Directors strong on professionals, and with a larger, more experienced staff.

Emily Taylor’s five-year plan for ME/CFS on the legislative front brought a big-picture mentality this disease sorely needed. Similarly, Solve ME’s Chief Scientific Officer, Sadie Whittaker, has created a grand plan to align all the stakeholders – government agencies, pharmaceutical companies, researchers, clinicians and patients – in working together. Both see possibilities where others have only seen barriers.

The Patient Registry/Biobank – a seemingly never-ending project that has taken longer and been more challenging than they ever thought possible – is getting done. She called it a foundational tool – a tool for the ages – something virtually every other disease has and which will support ME researchers around the world. The Ramsay Awards – which they hope to double this year – have been successful at stimulating research in a wide variety of areas.

Carol said she felt lucky to be able to work in a field she felt so much passion for.

What kind of person does Carol want to next lead the organization? Someone with passion, senior level connections (business, sciences, federal government, fundraising), who’s nimble and entrepreneurial and thrives in a fast-changing environment. Somebody who can look at this disease from a 50,000-foot level; i.e. the grand plan level. In other words, someone who thinks big. Not someone who’s spent their career in large organizations – more like someone who enjoys the challenges facing a startup.

She said Solve ME is casting their net far – from people who’ve worked in disease organizations to people who’ve worked in startups. She said they’re finding solid candidates.

Her first priority right now is figuring out how to get her health back, be an active Solve ME Board Member and possibly work in other areas in ME/CFS: “I’m not going away. I’m still so furious about what’s occurred with this disease.”

She felt she was very lucky to get the opportunity to lead Solve ME.

“I’m lucky. Many people who have a passion to work for justice, make the world a better place, don’t find a natural fit for their skills and their interests, but I’m lucky that I have found that and I’m not going to let go of it. I’m not going away.”

Find out more about Solve ME here

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