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.
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.
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.
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.
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.)
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
I’m not at all surprised as all of us know that when we exert ourselves, we get worse. (PEM)
(Also, some survey indicated dedicated hard workers (high achievers) are more prone to ME/CFS.)
Carol’s passion is understandable given her experience but I have yet to read of one person who was truly cured permanently & am skeptical of all ‘cure’ claims. Usually a remission of some sort as she apparently had.
I only hope is that since it seems she originally had milder symptoms than many, that she hasn’t damaged herself, only to slip into a group that has more debilitating permanent symptoms.
Carol told me she was probably around 90% when she took the job – not completely well – but well enough to work full-time for many years.
We have much to be grateful for in Carol, Emily and patient advocacy. This article rings true not only for NIH but in general for how U.S. government research agencies work.
I believe we need philanthropists to get more energy behind the initiative. Funding can be donated to NIH for particular programs – unless the rules have changed from a few years ago. Or it can support independent research centers.
Personally, I’d like to see a carefully thought out independent think tank made up of carefully picked world-wide successful business executives with one year of quarterly meeting funding for organization and real-time thought capture and integration.
The input would be a who’s doing what and a S.W.O.T. and output would be to critique the S.W.O.T. and develop a strategic plan that includes realistic identification of barriers and how to work around or leap frog.
In the interim let’s not forget that small breakthroughs sometimes ripple into big successes. And NASA and DARPA are agencies that have supported medical breakthroughs – why not include them in the mix.
Thank you for the thoughtfully written and inspiring article.
Cudos to Carol for seeing how the system does and does not work and the ever so slow pace as it’s not happening to them. I continue to have a question that no one will ever address: I went to the list of NIH supported diseases and every one of them was overseen by a national organization which we have never even attempted to create. Instead, we have fragmented groups with different missions doing their own thing with no communication between the groups. The already well known advice about doing research correctly using the scientific method with large numbers of patients and cohorts, peer review, replication of results has not happened as well. The patients are in a power struggle over what to name it although that point is rather moot but the diagnostic and research definitions are not. Determining which specialty would take over was never mentioned to my knowledge nor did anyone loudly question why students and currents practitioners had not begun to be educated perhaps because other decisions had never been ascertained.
Please, someone in authority explain to me why we don’t have a national organization instead of multiple largely patient ones who insist they want things their way despite not understanding good research. They argue over which definition to use: CCC of ICC as well as insisting on the name ME. Were any of this to be agreed upon, only then would be finally be beginning. I’d written an excellent script and planned out every detail for a TV PSA and presented it to MEAction and Solve and both immediately told me that they had too many irons in the fire although I wasn’t asking for them to do anything other than to back up the PSA upon their review and approval. PSA’s including billboards would do a lot to raise public awareness with physicians even. I remember some years ago Dr. Unger being directly instructed to develop teaching modules for students but to my knowledge it went nowhere.
Why does everyone go silent when a national organization is mentioned? Are they all too busy protecting their own agenda to deal with someone “in charge”? We are the only disease funded by the NIH that does not have one so I always wonder who is in charge? Nobody. And although I am very much a patient, I’ve seen patients be too demanding of their own desires and thereby blocking progress. The name just doesn’t matter. The diagnostic criteria does.
Anything else I would say here would be redundant but I beg of someone to speak to these issues.
And thank you, Carol, for giving it your all and then some.
I used to even suggest that we actually MAIL letters to our congresspeople so they have something to hold in their hand and that was never addressed.
It is apparent that we are doing something “wrong”. As well, I’ve never quite understood what is even meant by “Millions Missing” as regards ME. Heaven help us if they all jumped up at once wanting to be seen by our handful of specialists. This whole issue leads me to honestly be disgusted although I certainly support those still in the game making an attempt.
I found the film UNREST to be a sham, a scam, inaccurate and things I shouldn’t say. I sat in Atlanta in the auditorium and thought “don’t these other bigwigs see that her symptoms in no way represent the average symptoms of ME patients. She took money from poor people that had none. We purchased her state of the art wheelchair when she indeed could walk and even frolick on the beach. I understand that she is still regularly requesting more and more and more money but to what end? She admits she does not have ME which came as no surprise to me. There is no accounting for where the money goes which brings to mind a pocket. And yet all the bigwigs stand silent. Why?
I’d really like to begin a discussion on these subject matters if anyone could bring themselves to have a logical conversation on what is the best way to proceed since all of our attempts thus far have led to…. much of nothing or in fact damage.
Thank you for allowing me this opportunity to state my feelings. Marcie Myers
Marcie, thank you for your long and thoughtful comments. Without addressing everything here, I will say that all the senior people at the three key organizations (Solve ME, OMF and MEAction) think about and discuss all the issues you raise. And we talk with each other and occasionally have worked together. The way I see it, each of the three organizations has found its “lane” is is doing good work in that lane. We are all financially constrained.
And I submit that Solve ME is a national organization, as you describe. We do work in all three key areas: Research, Advocacy and now Patient Support, across the US and also internationally. The ONLY constraint on our work is dollars. We have highly committed, experienced, smart staff. But fundraising in this space is VERY difficult.
Sorry to hear this, and I hope Carol has another big remission soon. We know our illness can be unpredictable.
ME/CFS, with its range of invisible symptoms, its prevalence among women, our need to become ‘caricatures of laziness’ pushes every hostility- inducing cultural button. We are just a bunch of lazy, work-shy, hysterical women, taking advantage of society’s willingness to help people if they are ‘really’ sick.
Heidi reigns…what these invalids need is a healthy attitude, fresh air and exercise.
No one is interested in our tales of woe, they are sick of the sound of our voices.
Ramsay found the most effective treatment was an immediate, extended period of complete rest.
No one will research the effectiveness of this treatment, because no one would make any money.
However, references to the famous hospital epidemics, LA in the 1930’s, the Royal Free in the 1950’s suggest that at that time only a proportion of patients became chronically ill. This means that a proportion must have recovered.
The psychiatrists pretend that their model of ME/CFS provides ‘effective’ treatment, therefore would save the NHS/the taxpayer money. There is no evidence of this. Whatever else they claim about the PACE Trial, no one got back to work.
What would save the NHS/the taxpayer money is for people with ME/CFS to get better and get back to their professions/jobs/education.
How much would it cost, in time and resources, for a doctor to send their patient home with instructions to rest for six months?
The few contemporary accounts of recovery tell us that this is what a few courageous doctors do.
A doctor who spoke up at an Invest In ME post-conference discussion said ‘we take our patients into hospital for the diagnostic testing…and our patients get better’.
Let’s campaign on the basis that proper treatment will save money…..no one wants to hear about suffering, but everyone is interested in what happens to money.
(Recovered patients could be the best advocates for the funding needed to finally crack this disease..)
Would love to have some reference on where the physicians live who are putting patients in hospital and making them better. We don’t see enough sharing of the little that works, nor talk about it enough. Memories of the little drug that works but can’t get approved are fading entirely. And how did Cher get well enough to perform on Broadway? Sharing in Science is a key to progress. Erik FBs and tweets and is beating back mycotoxin disease one patient at a time.. You can message me on FB with any good protocols you have come across.
This is a very inspiring interview indeed – which seems paradoxical considering what bad shape the disease is in – funding-wise & reception-wise. The stigma is no doubt our key problem. We’re lucky to have those people with a personal connection to the disease who continue to help. Most steer clear.
I am so grateful to Carol and hope very much that she gets another remission. Rest, Carol – we really need your vision!
Turning around the stigma is a huge deal. I feel we are doing that all the time – every news article, every Medscape article, every research study that gets press helps do that. We’ve got almost but nothing good media for years. As that nut is cracked I think the floodgates of support will open more and more.
Thank you. I am by no means leaving the ME space. However, without the day-in-day out stress of leading an organization in a contentious space, I may even be able to do more regarding ME. And I do believe I can increase my level of health.
Carol has done a wonderful job and deserves a much needed rest. It is helpful of her to share her views on the NIH prior to leaving.
A rational view of the situation is helpful, and given what was explained, going to Congress makes sense.
As someone who participated in the lobby days, it’s clear we gave much work ahead. The professional training in how to lobby Congress was excellent, but many of us were appalled at the paltry requests we were asked to make, given how great the need is.
The groundwork, thankfully had been laid, and that speaks well to the work done by Solve. The Congressional and Senate offices we met with understood ME/CFS, were empathetic, and wanted to help. The “asks” we were asked to make were a joke.
If we want to get serious about increased funding we need to have a well-thought out and ambitious strategy, and not be asking for toothless dollars that won’t get us anywhere.
And if we sick volunteers are going to be asked to travel at great cost, using dollars we could sorely use for our own care, we’d like it not to be a waste of time and done for something meaningful.
As a patient, I hope whoever tajes over Solve can get us around the corner into the final lap to victory.
Thanks for participating Lobby Day and w have an interview with Emily Taylor coming up which will answer some of your concerns. I know what you mean about the “paltry” requests and you weren’t the only one that wanted bigger requests. It’s a good thing to want it all and to be disappointed when the asks don’t seem big enough.
Here’s my understanding of why the requests are the way they are. At year 3 of the five-year plan the goal is to get as many Congress people on board in both houses of Congress as possible supporting ME/CFS. The requests are set with a low bar in order to do that.
View them as one step on a long road – a road which has to be taken step by step – because right now we don’t have a chance of getting our “big ask” through. First we build the support through these mechanism. THEN when we’re in position to make the big ask – the direct plea for funding – we do that.
This is the first time I’ve ever seen a strategic, long term plan for ME/CFS. It actually is quite ambitious – nobody has ever gotten close, not even remotely close, to getting Congress to author a bill telling the NIH to spend more on ME/CFS. It’s a rare thing when Congress does something like that. Let’s hope we can be one of the few diseases to do it.
Thank you for this informative piece. There is so much that I was not aware of so I appreciate all your effort to write this. Special thanks to Carol?
Thanks
Thanks to Carol and all those who give selflessly to this disease. We need to support each other as we “crawl” this journey. (“Walk” seemed like it took to much energy!)
I went to Lobby Day almost 22 years ago only to be met with a hurricane warning. . The government shut down. We just need to keep pushing and get our friends and family to do so too.
Again many thanks to Carol and may you gain energy, clear thinking, reduced pain soon, ….take care of yourself
Nora Whiteman
Mpls MN
What we need is a Hollywood A-lister to get ME/CFS [actually would not really wish it upon anyone] and become a spokesperson for the cause. Or perhaps someone has a child with this miserable illness!
there are peole, thought Cher has it, but she puts it in silence. I would also be ashamed to go public with that stupid name cfs. And everything that is said about it, childhoodtrauma, falls beliefs, exercise and cbt, hypochondriac, psychosomatic, etc One would for more stay quite with such a desease.
It’s difficult to be more famous than Blake Edwards and the Pink Panther movies. He was part of a documentary called, “I Remember Me”, in 2000. But in America anything older than last week gets flushed down the memory hole.
Of course this is a very good idea…and much more easily said than done! Solve ME has worked on this and I suspect others have as well. We have not given up, but finding a sufficiently well-known person, who is willing to go public, take time/energy to do hard work, who will doubtless be waived away from this stigmatized disease by their agent is a huge hurdle.
Meanwhile we are quite grateful to Amy Carlson and Morgan Fairchild who have stepped forward and given selflessly of themselves regarding ME.
First I want to seen the 100.000 million in 2025 before I believe it. I had enough of the promises over decades from researchers and goverments. That people who could, still do not donate large amounts of money, I do not understand. Ther has been in the US so many advocacy done. And press. And the film unrest. researchers are aplying for grants. Even with the 3 centers of excellence, as if the nih was not able to fund all requeusts. 3 decades of severe illness and many broken promises later, I still have to see big change before I believe it.
And who invented the stupid name CFS. and kept it that way while long time ago, I thought researchers wanted to change it in NEIS -neuro endocrine infection syndrome. But as I remember well (to ill), I thought that researchers said everybody is used to cfs so we do not change it. every other name, even SEID was better then cfs. Ofcource everyone thinks we are just fatigued. but being bedbound for 98% or 99% for so long and getting worse, my complaints are far away from being chronic fatigued syndrome. what a name is that?!
and aids patients where difficult to but they demonstrated and people where scared to get AIDS to. But I can not demonstrate being bedridden. As so many of us. But they recommend us to not donate blood…
and how long has the economic cost of cfs/me allready been known in the US? As if that does not mean anything for policymakers, etc. I still have the feeling they just do not care, as long as it is not one of them.
Policy makers don’t just come out of the woodwork to support us or anybody else. They’re not knocking on our doors. We have to take the appropriate action to get them involved. We have to go to our very busy Congressmen and women and enroll them in taking action for us. That’s why this time its different – this time we have a plan – a five year plan to do so.
Five years is not an arbitrary number – if it was possible in three years it would have been a three year plan. but the fact that it’s five years indicates how difficult a task this is. That’s a lot better, though, than spending 30 years doing something which would never work – which is basically what we’ve been doing in the past.
Yelling at the NIH from the bleachers that they’re bad and wrong, that they should change how they operate obviously hasn’t done much. It’s like a little row boat trying to change the direction of the Titanic – yet we kept doing it and kept blaming them and getting upset when it didn’t succeed. (lol)
We’ve been doing the same thing with Congress as we have with the NIH. We didn’t take the time to learn how they operate and never developed a plan that could work with them. Then we got upset when we didn’t get want we wanted! Shame on us!
The past is not prologue – unless we keep repeating what we were doing in the past…Thankfully we’re not doing that anymore.
That’s why I’m very glad Carol hired a professional (Emily Taylor) and we have a plan. We’ll see if it succeeds but at least now I think we have a chance.
Now I’m looking forward to finding out about Sadie Whitaker’s plan 🙂
Well said, Cort!
“Chronic Fatigue Syndrome” was the name suggested by Dr Stephen Straus of the NIH.
It’s hidden purpose was to trivialize and disguise the 1985 Lake Tahoe outbreak, which was scaring the country so badly that tourists were refusing to come to Lake Tahoe.
By giving the syndrome a dumb name that no one could take seriously, the nation was reassured that nothing was going on, and they did come back.
Only those who saw the outbreak in motion or knew sick people remained scared, in spite of the CFS name.
To this very day, some at Lake Tahoe will turn white with fear and run when the outbreak is mentioned.
I submit that this – the name was an attempt to trivialize the disease and ensure that it was not taken seriously – was not true – and we should be careful about re-interpreting the past so as to confirm our worst fears or our most delicious conspiracy theories. I’m not saying the CDC couldn’t have done better – of course it could have – but that doesn’t necessarily mean there was some plot to get ME/CFS. Other factors came into play.
As the article state – https://www.ncbi.nlm.nih.gov/pubmed/2829679 – ME/CFS was believed to be a form of chronic Epstein-Barr virus – but the tests did not indicate that was so. Nor was there the consistent evidence of brain damage needed to call it encephalomyelitis. Nor was there clear evidence of severe immune dysfunction.
Basically the disease was a mystery, the most prominent symptom of which was severe fatigue, and so the authors – who included Tony Komaroff and Nelson Gantz – one of the outstanding ME/CFS physicians of the time (the IACFS/ME gives an award away in his honor every two years) and Schoneberger, who, over the next six years participated in no less than 3 studies looking for a retrovirus in ME/CFS – gave it that name. Komaroff later admitted it was a huge mistake but at the time he felt it was the best name for the disease.
Just like people have incomplete and untrue conversations about ME/CFS so do we indulge in similar conversations about other entities such as the CDC. It’s obviously enticing to have a simple answer; i.e. the CDC hated us and simply turned away from us, but the truth is the CDC story is far more complex, it involves numerous individuals with differing interpretations of ME/CFS.
Firstly, thank you, Carol, for your passion and leadership. As a person who has burnt myself out during two long remissions, I know what having to take even a small step back from work which makes you feel alive, and purposeful is profoundly disappointing.
And thank you Cort! You are just the most amazing communicator, and without this blog I would not be able to speak to myself about this illness. I agree, the name “Chronic Fatigue Syndrome” is a double curse. It is a name that many recall as the “Yuppy Flu”. It’s a shaming name.
I think that we need to take control of at least re-naming this disease. It could be Myalgic Encephalmyalitis, which at least sounds SICK! We need to educate people through the media, TV commercials, on-line campaigns. More films like UNREST. Crowdsourcing for funds to educate. We need to change hearts and minds.
But how do we do that if the general public doesn’t understand what we’re suffering with? We know MS. How do we let people know that many of us are deathly ill! Are children? Have died? Have commited suicide? Or, live with shame and pain? Lost relationships, divorce and alone?
How many people have heard the following: “What’s Chronic Fatigue Syndrome? Because I think I have that too!”
Chronic Fatigue Syndrome brands us as malingerers. Let’s rebrand this illness. Do a campaign with the help of crowdsourcing. A campaign that introduces ME or whatever we call it to the general public with the same pathos we see for endangered animals! WE ARE ENDANGERED.
Pull at people’s heartstrings. Show the suffering in commercials, and then celebrities might be more willing to come forth to advocate. (I don’t think celebrities with this illness want to speak out because they fear, (rightly) that they won’t be employable. But another spokesperson might. Someone famous with a relative who has this. Or a child. Or a researcher like Ron Davis. He’s be amazing!
With these thoughts, I pray for all of you and with all my heart. We are going to get to wellness. I believe this after 45 years with this disease.
Thank you.
It would be great to rebrand this illness. I hate saying “the name” and it has obviously had significant consequences. Until researchers reach a consensus on what this is – at least in a general sense – I don’t think we’re going to have their backing, which I think we need, unfortunately. On the other hand the field could coalesce around problems with energy production.
I do want to bring up what I think is a larger issue – one which suggests we should not expect miracles when we change the name. It will help – particularly for us patients – we won’t have to feel embarrassed by the name – but it will be just one step in a series of steps.
Not that fibromyalgia has an excellent name, it affects more people than ME/CFS – and it gets LESS funding. There’s something about these diseases – diseases which mostly strike women, are “invisible”, cause pain, fatigue, sleep and cognitive problems – and are not thought of as killers – which has, for some reason, inhibited their funding. Migraine fits this scenario as well – and it gets lousy funding.
Changing the name will help us do what we have to do which is alter the entire gestalt around these diseases – a large part of which involves the idea that these diseases are not particularly serious. If you look, the medical community has always given short shrift to pain disorders so it’s perhaps surprise that it would mostly ignore or downplay the quintessential pain disorder – fibromyalgia.
By the way – why does ME/CFS – which has about a 1/10th, I think, of the prevalence of fibromyalgia – get substantially more funding? Because of our advocacy! And our very active and involved community. So kudo’s to us and come on fibro! We need you to get creative, get active, ramp up the interest and the research dollars – because you will help us solve ME/CFS (and we will do the same for you.)
Cort, I have fibromyalgia as well as ME/CFS. I don’t ever mention the former when I talk about myself. I feel it overwhelms people with cynicism, I can imagine the eye-rolling Oh, two trendy female niche thing-ys. Fibromyalgia has become a household name. Thanks to advocacy and pharmaceuticals.
However, symptoms for both illnesses are so over-lapping that I can’t tell one from the other. Can most people with both ME/CFS
and Fibro distinguish what is what?
I wish I had the brains I used to have to be a stronger advocate. Often, in this community, I feel like a taker and not a giver. I apologize for this. And if you ever need a non-scientist for branding, I think I could help there???? I’m in awe of what you process for all of us, Cort. I’m on this island and totally in your debt.
Thanks. I would be surprised if most doctors could distinguish the two – and in many people probably meet the diagnosis for both, anyway.
My guess is that the FDA approved drugs for FM – even with their often limited impact – have done a huge amount to increase awareness about FM – which makes it doubly strange that while we have several non-profits/research foundations dedicated to researching ME/CFS (OMF, Solve ME, Montoya’s Stanford Initiative, the Institute for Neuroimmune Studies (Klimas), ME Action, MERUK) I don’t know of a single one for fibromyalgia. It’s very strange….
Cort, I didn’t see this addressed in the comments above.
What is the “other small disease” (I might have forgotten the exact words you used since it took a lot of time and attention to go through all the comments to see if any one else addressed it) that the NIH gives the same attention to as to ME/CFS?
And do you know what the size of the affected population is?
Thanks.
Cort,
Because you reach so many people both with ME and others, I just wanted you to know that Rotary District 5440 has submitted a resolution on ME to Rotary International. It is only one of many resolutions but we are hoping they will support it. I don’t think it would be bad for your group to be aware that this might happen. If you want more information about the resolution please email my husband at Jimlutey@gmail.com and he will send you more details and the resolution that was submitted
Thanks,
Pam Lutey
Thanks Pam for providing another instance at how we are reaching out and changing the conversation about ME/CFS. Getting mainstream orgs like the Rotary Club and its 1.2 million members can only help!
I love the Rotary Club’s emphasis on action
“Rotary is where neighbors, friends, and problem-solvers share ideas, join leaders, and take action to create lasting change.”
That’s the kind of organization I’d want to be part of. 🙂
Cort,
Would you really like to join Rotary? If so, I would be glad to get you connected to a group in your area. Would you like us to send you the Resolution that is being proposed? It will probably be late November before we know if they are going to support it. If they did, it would be a gift from God!
NIH and CDC could make a huge difference without spending a dime, just by calling a press conference where they make it perfectly clear that it is no longer acceptable for the medical industry to abuse ME patients. But hell will freeze over first.
NIH and CDC intended to bury the illness. There’s no need to take my word for it when one can read the policy spelled out in black-and-white, on NIH letterhead, from Straus to Fukuda:
“I predict that fatigue itself will remain the subject of considerable interest but the notion of a discrete form of fatiguing illness will evaporate. We would, then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder.
I consider this a desirable outcome.”
http://www.cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html
They have never denounced or apologized for this letter, and they have never changed the policy, either. The NIH first established three cooperative research centers around the year 2000 and quietly cancelled them in 2003, with no explanation. Maybe nobody asked why.
Essentially we are still where we were 20 years ago, except now we don’t even have the CFS Advisory Committee to provide a podium. It will take a court order to change NIH policy, but there’s not much interest in that. As far as NIH and CDC are concerned, this is as good as it gets. Better get used to it.
It’s 20 years later and the CDC has repeatedly stated that ME/CFS is a serious disorder. They’re also intimately studying the practices of a host of ME/CFS experts. They actually did look hard for DeFrietas’s retrovirus and so did others including the CAA and other groups. Nobody was able to find it. Note that the NIH did pour money into XMRV; i.e. they can respond.
Of course, people noticed the research centers going out of existence. They were cancelled after NIAID, which was hosting ME/CFS and paying for them, kicked us out stating that it didn’t think ME/CFS was an immune disorder.
I appreciate your being public with your comment because it points out something that I’m sure is stopping us – which is getting stuck in the belief that because something didn’t work out in the past, it’s not going to work out in the future. It ignores the fact that the circumstances really are different now – not only are we much stronger now but the NIH has changed and we have more supporters there.
But Cort, many many if not most people in the general population (including our families and friends) still have that attitude imprinted in their minds. What has the CDC or NIH done to change the public opinion of what “CFS” is??
Hillary Johnson in Osler’s pointed out that the CDC did not try hard to replicate De Freitas work. They worked hard to look like they were trying hard but changed key parameters of the methodology to make their work not replicate hers; then they launched an international campaign to destroy her reputation. CAA did nothing to support her. And she was working with Hilary Koprowski, for goodness sake. He was a scientist so highly reputed that Ian Lipkin named his dog after him.
Well, the Dr. Mikovits made the same argument – you have to follow the protocol exactly! That’s not true though. Researchers know how to find retroviruses! And it wasn’t just the CDC.
One group used four different methods to look for the retrovirus in blood and muscle tissue – and didn’t find it. https://www.ncbi.nlm.nih.gov/pubmed/1479030.
The Japanese looked for the retrovirus using three different methods and failed to find it. https://www.ncbi.nlm.nih.gov/pubmed/7507200.
The CDC reported that “Even with excellent reproducible sensitivities” they were unable to find it and then looked for four other retroviruses (simian T cell leukaemia virus, human spumavirus, bovine leukaemia virus and simian retrovirus) and failed to find them. https://www.ncbi.nlm.nih.gov/pubmed/8387909. Then they did another study and failed to find evidence of it. https://www.ncbi.nlm.nih.gov/pubmed/8420441
The same thing happened with DeFreitas/Koprowski’s HTLV-1 finding in MS – https://jamanetwork.com/journals/jamaneurology/article-abstract/590369
The CAA as I remember actually poured a lot of money into DeFreitas work and kept her going but when it became clear that it wasn’t going to work out they pulled back. My recollection is that Hilary did not report on the results of the last study which indicated that even DeFreitas couldn’t identify the true ME/CFS patients.
Lipkin may have name his dog after Koprowski but the best viral hunter of our age – who would LOVE to find the answer to ME/CFS – is not looking for retroviruses – something to thing about.
I think we love simple answers and love the idea that someone is the villain – instead of more complex and less enticing but probably more accurate views. Another way to assess the CDC is to look at their research record and their record on educating physicians. Not much bad stuff there.
I’m certainly not saying the CDC is gods gift to ME/CFS but this demonization of them that continues and continues is years past being accurate, Dr Klimas has implored patients to give the CDC a break.
Why we so tightly hold onto the negative stuff and ignore anything positive that might conflict with it I don’t know.
Wow. Thank you for sending this in!
Cort wrote: “It’s 20 years later and the CDC has repeatedly stated that ME/CFS is a serious disorder.”
CDC announced their ballyhooed “Multi-site Clinical Assessment of CFS” in 2011. They are so serious that *eight* years later, they have published… a protocol paper. That’s it. That’s how serious they take this illness.
Speaking of failed strategies… for decades the strategy has been, if we just formulate the arguments with exactly the right words and data, and send them to the right policy decision maker, at the right phase of the moon, “they” will just *have* to do something. But as we have witnessed all too often, NIH and CDC managers need only shed a few crocodile tears, then its back to business as usual.
It’s easy to ignore sick people yelling from their beds. It’s not yet so easy to ignore court orders. Families with special educational needs children have had success using Section 504 of the Rehabilitation Act, which applies to all levels of government. I suggest it could be the basis of a civil complaint against the federal government.
I’m not suggesting it would be easy, fast, or cheap to sue NIH, rather, it is time to try a new strategy, ’cause what we’ve been doing sure ain’t working.
Obviously our strategy has not worked! And of course you’re right – the NIH and CDC are not going to change their ways to accomodate us. That doesn’t mean that good people aren’t working on our behalf there – it means the Institutions are not supportive. That’s why I’m glad we have a new strategy – which DOES NOT rely on the good faith of those institutions.
I agree that its been a long time with the CDC. My understanding, though, is that the CDC expanded the multi-site study then decided to wait until the second half of the study was complete before crunching the data. I believe that part ended earlier this year and hopefully we will finally the results in the not too distant future. I’m hoping! It has been a long, long wait.
Why call it ME/CFS when all along it is Ehlers-Danlos Syndrome a Genetic Born connective tissue disorder of numerous types…Epidemics I doubt very must maybe somewhat of a cluster but not any epidemic, even the CDC that visited said these
people look different but I guess they missed the Ehlers-Danlos Syndrome facial looks…Its not hard for me now to miss EDS by facial it stands out like a sore thumb…How many now have HATS all along? How many have Alpha Gal Meat
Allergy? How many have Eagle Syndrome? How many have GSD types? How many have IDO-1 mutations? These alone will be proof no Epidemics happened. When one has a lot of Genetic illness Families living in same areas numbers Sick tends to
cropt up…Still lots we do not know about EDS traits, also very rarely Funded by the NIH Cabal Hoods after all they think it is rare. It is not rare at all it is rarely Diagnosed Dumb Dumbs even your Doctors could not diagnose EDS if you saw it to
your Faces it’s easier to say you are crazy, nothing wrong with you ‘all in your head’
Honestly, I think the NIH should be entirely Closed down & a completely new Institution started, one the Cures Diseases not one that makes profits from Pharmaceutical Toxic sales & Patents…Has the NIH look for Toxicity in these
patients bloods from being Poisoned by Antibiotics? There are Forensic tests to do so the same tests used by Coroners in Murder Investigations looking for clues if someone was poisoned to Death the NIH should be looking for this in the bloods it
would also explain countless Sick in numerous regions, one does not have to go to Lake Tahoe to get Sick either all they need to do is go to Doctors Offices for these Poisons, numerous Sick now from these Prescriptions, where are the Medical files
they were Prescribed? How come no one on hear mentions this at all I find this very odd that only this Group does all across the internet? Maybe we could learn a lot from these people poisoned by Antibiotics even Ron Davis needs to talk about
this as well…One Doctor in Scotland diagnosed herself with Eagle Syndrome calcification she blamed the Antibiotics she even wrote a letter to the Editor of a Published Paper called ‘The Eagle Has Landed’ I am now looking back at all my Old
Medical files prior to becoming Sick if I find those Antibiotics a huge multi million pound Lawsuit will Follow immediately in London High Court http://www.floxiehope.com
Cort, what’s inconsistent about the slow-and-steady, maddeningly patient approach to changing the NIH funding model that Carol Head advocates is that Dr. Francis Collins promised patients in 2016 he would change the funding model for M.E. research. That was AFTER the definitive IOM Report was published in 2015. And here we are, FOUR years later, with a funding level that has DECREASED, not increased since 2016. That’s based upon Jennie Spotila’s excellent posts here: http://occupyme.net/2019/04/17/i-want-to-believe-dr-collins-but-i-dont/ and here: http://occupyme.net/2019/05/29/another-nih-funding-fact-check/
Here is the penultimate paragraph in Jennie’s May 29, 2019 post:
“If our goal is to secure more research funding in order to identify treatments for patients, then use the correct information. NIH spent $12.5 million on ME/CFS in 2018, not the $14 million that they claim. Funding was down 10% in 2018, and we slide backwards down the funding ramp that Dr. Francis Collins had promised us.”
I think the “M.E. community” needs to unify around our goals. We would all benefit. The patients and their families want to change the funding model. And we are grateful to Dr. Ron Davis of OMF who has been wonderfully vocal about this by reinforcing the call for the NIH to allocate “at least” $200 million annually (based upon the calculation of the “disease burden” of M.E.) If there is a multi-year approach to slowly and/or methodically reverse the historically neglectful, punishing level of underfunding by NIH, I want to understand the strategy. I am sure I’m NOT alone in the patient and activist community in asking for this. That way, we can all get on board and join the chorus.
Please don’t confuse Carol’s recognition that the NIH works in a maddeningly slow manner with with the idea that Carol is taking a slow approach to the NIH. To the contrary… When Carol became President she put precious dollars into hiring a professional advocate in order to speed things up; to get Congress to force the NIH to spend more money. This is the quickest way they know to do this. If it could be done in one year I’m sure it would have been a one-year plan!
It’s great that Ron is calling for that – and his argument should work well in the halls of Congress, and I think arguments like that will work best when done in the context of a organized effort. We’ve always, after all, had people calling for more funding and we’ve always had great stats. We’ve had great arguments – we’ve been using them for decades – and…here we are!
What I believe (and fervently hope) we’ve been missing is a methodical, organized plan to build enough support in Congress to push the NIH to move. Some of the elements of Emily’s plan have been presented on Health Rising. You can find them here – https://www.healthrising.org/blog/2019/03/30/the-squeaky-wheel-the-smcis-professional-advocate-emily-taylor-on-strategically-making-noise-for-chronic-fatigue-syndrome/
I don’t know if Emily’s plan will work and she’s admitted that advocacy at the federal level is risky business. I’m not under any illusions that this WILL work but I’m not going to second guess her. I’m not, after all, a professional advocate… I haven’t worked on the Hill, I haven’t spent years learning the system – so I’m going to rely on her experience and back her to the hilt. I hope we can all align on this effort – and let’s hope it works!
I have found Emily to be a particularly ineffective advocate.
Francis Collins is not our “ally”—did you see his pathetic performance at his own “Accelerating” ME/CFS research conference earlier this year? And, thanks to Jennie Spotila, we know our funding actually went down last year. Sick of it.
So why is Francis Collins our ally? Because he’s publicly in the media and on his NIH Directors page stated that the NIH has neglected this disease, that it is a serious disease, and that it needs better funding. Because when the IOM report came out he pushed for the Research Centers and he specifically came up with and helped fund the NIH Intramural Study. He also got behind the effort to figure what the heck was going with XMRV.
When was the last time you heard the head of the NIH saying ANYTHING about ME/CFS? Or dropping in on an ME/CFS conference? Or for that matter, an Director of a Major Institute (Koroshetz) doing similar things?
Is Collins doing all we wish he could do? No but the fact that he’s not providing all we want doesn’t mean he’s not an ally. It just means he’s not providing all we want!
Here are words that will live in infamy:
“We have done what we can in terms of the resources, both intramurally and extramurally.”
(NIH Director Collins, Accelerating Research on ME/CFS meeting)
http://occupyme.net/2019/04/17/i-want-to-believe-dr-collins-but-i-dont/
I understand how you feel because I felt and feel the same way but I assert that you’re still asking the NIH to change its spots and the way it behaves for this disease – and that’s not how the NIH does things.
Check out the article again – from what I can tell the NIH – this 130 year old organization – relies almost entirely on researcher interest to determine where its funding goes – and researchers are not interested in ME/CFS! If they were applying for grants our funding would go up. In fact, the last couple of years have seen the lowest number of applications for research grants for ME/CFS in decades.
The NIH is not constituted in a way that makes it easy for it to reach out a hand to a disease like ME/CFS – just the opposite. It’s just the way it’s built. We have to stop hoping that Francis Collins and the NIH are going to save us and then getting upset when they don’t. The NIH doesn’t have any mechanisms so far as I can tell that could help our supporters to get us more money, and if you don’t have an mechanism in a highly competitive environment like that I imagine you’re in real trouble if that’s your only way to survive.
If you really want to fix this field find a way to get researchers to do something very basic – apply for funding. The Research Centers applications left around 15 or so seemingly grant application ready opportunities on the table. So far as I can tell only Ron Davis has taken advantage of that. That’s kind of it in a nutshell. I expected the grant application rate to at least double over the next couple of years but it actually declined. It’s a mystery to me..
I would like to know what that “other” disease is that the NIH gives the same attention to as presumably the larger population of patients suffering from ME/CFS. Cort, I didn’t see that you named it in your article, though you mentioned it.
Could you name it?
Thanks.
Apologies for my vagueness above. This is the quote from your post that I’m curious about: ” While the NIH is spending very little on ME/CFS relative to its needs, an examination of past NIH funding found only one disease – a small one – which proportionately received as big s bump in funding as ME/CFS did.”
Yes, that article was written a couple of years ago (https://www.healthrising.org/blog/2017/01/18/nih-funding-chronic-fatigue-syndrome-increase/) and the disease was Valley Fever – and guess what – the funding is now back to where it was. The funding increase was not sustained. I don’t know how it got bumped up – some politics may be involved -but it suggests that we need to build allies at all levels of the NIH for a sustained increase.
It’s an endemic disease in the Southwest.
https://report.nih.gov/categorical_spending.aspx
Thank you Carol! What I found most amazing about her is how she can catch people being good. It is a far more effective strategy then lashing out with anger.
We all want results, IMO Carol’s strategy is the quickest path forward. 2.9M going to Dr. Younger is one example of the many fruits that will be born from Carol’s efforts.
Anger will not bring results unless translated into positive actions. I love how Carol has made it possible for both sides to save face and realize that we can become aligned in our efforts and desire for medical research and discovery.
As for the name ME/CFS…here is my background in artificial intelligence and semantics coming out. It won’t be long before algorithms are searching through medical notes in electronic health records for keywords for analysis. We need UNIQUE words to describe this disease and symptoms. “Fatigue” gives no insight, and will not uniquely identify this disease. I challenge the community to come up with one, two, or three syllable words for this. Think “AIDS”. It is brilliant from a marketing perspective. Start posting new words on Urban Dictionary. I’ve set the bar low with “mitotired”. Surely we can at least name our nemesis without waiting for NIH, Congress, expert panels, or anyone else. it takes some creative brainpower, but besides that it’s free. All you Spoonies out there, GO!
An insightful article provoking wide-ranging views of what it will take to move research forward, change the public perception of the disease, and create educational opportunities for the medical profession. Twenty-five years ago, CFS was characterized as “yuppie flu,” and even obtaining a legitimate diagnosis from a qualified M.D. did not lessen the stigma of having a disease without a biological marker, a cure, or even a treatment protocol that offered significant, sustained recovery. The stigma persists, a lack of public awareness persists & doctors are all too often not good patient advocates. But, on the plus side, patients are becoming their own advocates, demanding a fair share of research funds, sharing their ME/CFS experiences, & creating global networks. This is possible because of people like Carol Head who are willing to step up and do the hard work–even at a personal cost. So thanks, Carol, for investing your passion , intelligence, and focused commitment to this formidable task!