A Crack in the NIH’s Dike of Denial
We may be embarking on a new era in chronic fatigue syndrome (ME/CFS). Time will tell if we’re going to get a bit more funding for ME/CFS and it stops there or if funding really takes off. Right now more is lined up for ME/CFS than at any time I can remember.
There’s the NIH’s “reinvigoration” of ME/CFS research. The NIH roughly doubled spending on chronic fatigue syndrome (ME/CFS) and will, in a couple of months, start funding three new Research Centers. They’re not big centers so far as centers go, but consider that in a couple of months three of the following people – Ron Davis, Nancy Klimas, Ian Lipkin, Jarred Younger, Maureen Hanson, Vincent Lombardi (and perhaps others) – are going to be leading the first official NIH-funded ME/CFS research centers in over fifteen years.
Plus, we have two major figures at the NIH (NIH Director Francis Collins, NINDS Director Dr. Walter Koroshetz) openly supporting a million dollar plus intramural study that’s doing more extensive analyses of ME/CFS patients than have ever been done before. It’s definitely a start. We haven’t had a start like this in decades.
We’ve produced a small nice crack in the NIH’s dike of denial and neglect that’s been present for over 20 years.
That’s good news. The really encouraging news, though, is that the ME/CFS community is stepping forward just at the right time. Two groups, the Solve ME/CFS Initiative (SMCI) and ME Action, are pouring time and resources into ME/CFS advocacy like never before.
A large part of that is due to Carol Head’s decision to hire the first ever full-time advocate at The Solve ME/CFS Initiative. Solving ME/CFS is going to require much more funding, and the road to the funding pot of gold runs through the NIH – and that means active, skillful advocacy is needed.
There’s just no getting around the NIH. Even with its paltry, paltry funding for ME/CFS (relative to other diseases) the NIH is still outspending every other ME/CFS organization by a factor of at least three. Getting funding appropriate for this disorder would boost that number tenfold. Whatever our upsets with the NIH in the past, the NIH is where the money is. We have to crack that nut and that’s what Emily Taylor – our own full-time advocate – is all about.
There’s no denying that Carol Head has built a dynamic team at the SMCI. Carol said she immediately knew Emily was the one for the advocacy job she opened. Like Carol, Emily has personal acquaintance with the disease – very personal. Her mother got sick with it in 2008; by 2009 she was bedbound and Emily was her caretaker.
That left a mark, and like Carol, when Emily saw the job opening at the SMCI, she had to have it. Even if she didn’t get it, she said, she knew she was going to be involved. She had a nice gig going as the director for Policy and Advocacy for Special Needs Network at the time, but this was personal.
She comes loaded with experience. Her first paid gig was as a Campus Coordinator for Democracy Matters. As Legislative Manager for the California Institute for Federal Policy Research she did budget analyses and reporting on everything federal (legislation, hearings, funding, etc.) that affected California. As a policy analyst for the National Conference of State Legislatures (NCSL) she ran the gamut from lobbying for California with the feds to producing political white papers and policy updates for State Legislators.
During her three years as Director of Policy and Advocacy for the Special Needs Network she secured enough grants and funds to increase the networks budget almost fourfold (from $530,000 to $1.9 million). During her time there the organization celebrated over 16 legislative, budgetary and regulatory victories.
Carrying That Weight
As Advocacy and Engagement Manager at SMCI she’s in charge of all the organization’s engagement with Congress, CFSAC, the NIH and the CDC. She said it had been a learning experience. Her mother’s battle with ME/CFS was rough, but was not nearly as bad as she learned the disease can get. The severity of it was an eye-opener.
She also wasn’t prepared for the kind of ad hoc approach that’s been ME/CFS advocacy. She knew that about a million people in the U.S. have ME/CFS and that studies suggest it’s one of the most functionally disabling diseases, yet the patients were doing all the advocacy. That was an absolute jaw-dropper for her.
Emily’s past job – in an organization about the size of the SMCI – was focused on supporting minorities with autism in Southern California. She wasn’t leading the fight for autism; she wasn’t even involved on a national level; she was supporting one kind of autistic patient in one geographic area, and the budget she had to do that was roughly similar to that of the SMCI’s.
The idea that sick people were bearing the burden of formulating and running an advocacy campaign for a disease the size of ME/CFS just blew her mind. That kind of weight should never, ever, she thought, be placed on an illness community.
A Professional’s Guide Approach to (ME/CFS) Advocacy
So now we have our first full-time professional ME/CFS advocate. Advocacy is what she does. So let’s hear how a professional goes about getting more support for ME/CFS.
Consistency in Messaging
When risk-averse staffers on the Hill get conflicting messages, they typically don’t choose one – they drop both of them for fear of offending a constituency.
She said she’s rarely seen the kind of public dissension found in the ME/CFS community. Internal dissension – yes, she’d seen tons of internal dissension, but at the end of the day the different groups always worked it out and presented a united front. Forging a consistent message is obviously going to be a key focus.
Getting into All the Rooms
I think they used to be called “smoke-filled rooms”; now they’re just called rooms. However they are referred to, getting into the rooms where the decisions are being made is another key goal. It simply means having ME/CFS’ needs being part of the discussion when the decisions are being made.
When decisions are made on research funding or clinical care or medical education or any regulation that impacts ME/CFS, Emily wants to be in the room.
Emily remembers working her way into the various rooms with autism; at first its needs weren’t taken into account, but she stayed in the rooms and eventually the decision-makers made sure autisms needs were taken into account. With ME/CFS Emily has gotten us in the room with Research America, the nation’s largest not-for-profit medical research advocacy group, Research America now has a one page primer on how medical research helps people with chronic fatigue syndrome, and Emily Taylor is now representing ME/CFS on Research America’s conference calls.
Participation Reaps Dividends
Mobilizing voters is key. How important is the ability to mobilize voters? An issue that is not supported by a politician’s constituents can still get passed if an organization can mobilize its voters. The National Rifle Association (NRA), for instance, is able to stop gun control bills which voters support simply by rallying its members. Emily remembered one office that received 60 negative and three positive calls on a gun issue; the negative calls won out even though polls indicated that the politician’s community supported the issue.
Consistent appeals can make a big difference as well. She remembered one constituent who called every week about a local issue. Week after week she called. She was always polite but she was consistent and eventually she got her issue resolved.
Keeping Our Eye on the Ball
Emily suggested that if you’re going to do something, do something where even if you don’t succeed you’re better off afterwards. Maybe in the process you’ve recruited new allies. Maybe you got your foot in the door somewhere. Maybe you’re in a discussion you weren’t in before. A defeat doesn’t necessarily mean moving backwards if you’ve managed to move forward in other ways. This is, after all, a long-term effort.
Keeping the end goal in mind means that building relationships is critical. It means you never burn bridges because you never know who might be really valuable to you at some point. The alliances she’s made might be delicate at times, but Emily said she’s never had one go bad on her.
When I asked her about petitions to remove people from working on ME/CFS issues (one of which asked that Elizabeth Unger be removed), she expressed wariness with regard to focusing on individuals. In general she suggested moving on and recruiting others and eventually isolating the troublesome individual instead of focusing on them.
The Shorter case (Shorter, who believes ME/CFS is not real, spoke at the NIH last year) was a bit different; it was so egregious that the SMCI took it on. (In the end the heartbreak and anger raised in the ME/CFS community far outweighed the impact of the talk. For all the sound and fury, reports suggested that Shorter’s talk only attracted about 25 people, many of whom didn’t ascribe to his theories anyway).
So far she’s had lots of conversations with staffers and some congress people. She hasn’t had any bad conversations yet – she’s encountered no dismissive staffers – there’s been no downplaying of the seriousness of this disease – no mention of the “yuppie flu”. The main stumbling block have been that while people on the Hill understand our issue, they’re reluctant to tell the NIH how to do its job.
A Tale of Two Diseases
Emily used to work on autism. Autism is big news now, but it was not always this way. Look at the figure on the right which charts the number of autism journal citations per year for Pubmed, the big medical
database. Check out long, long period of meager journal publications for the disease. For the first 20 years (1980-2000) not much really changes. By 2000 autism is getting only 409 publications a year, but then the disease catches fire.
In five years the number of publications on autism doubles (n=927); in another five years it doubles again (n=1997); and in five more years it doubled once more! In fifteen years the number of scientific journal articles published on autism went from about 400 publications a year to 3,600.
Now look at chronic fatigue syndrome (ME/CFS). In 1991 ME/CFS and autism had almost exactly the same number of publications (ME/CFS – 223, autism – 228) but there the resemblance ends. As autism’s spike begins around the year 2000, ME/CFS’s bar remains distressingly steady. Fifteen years later – in a good year for ME/CFS, it’s getting less research interest (n=403) than autism was in 2000 (n=409).
What was the difference? You can make a case that it was advocacy. Vigorous autism advocacy began in the mid-2000’s. There’s no doubt that autism’s advocates have the easier task. The fact that children are involved gives them an extra edge, but those same autistic children were there during autism’s long period of mediocrity from 1980-2000.
I don’t know the entire story, but Emily said that a controversial organization called Autism Speaks was particularly blessed with wealthy champions and a strong vision. According to the Autism Speaks website, the organization was created and got a big donation in 2005 and over the next couple of years folded three other autism advocacy organizations into it.
They had a plan. They devoted enormous resources to fundraising, advertising and advocacy. They were particularly effective at using dramatic storytelling to paint a very dire picture of an epidemic forming – a pitch that served the organization well at the federal level.
In 2009, breaking all the rules, Autism Speaks was able to sneak dedicated funding for autism into a major health bill. A 2012 RFA gave autism a hundred million dollars to build its research centers. Autism now gets over $200 million dollars a year in NIH funding.
One of the differences between autism and chronic fatigue syndrome are autism’s huge stable of healthy volunteers. Virtually every disease organization has them, but they have not as yet shown up in ME/CFS. When they do – and my guess is that they will as our efforts get more effective – they will provide a powerful force for change.
ME/CFS is not autism – it doesn’t have $25 million backing it (yet) – but it’s worthwhile to note that autism was once where ME/CFS Is funding-wise and it wasn’t all that long ago. Emily’s goal (see below) is to pluck the best practices from different efforts and forge a unique path for ME/CFS.
An Opportunity Looms?
We’re living in tumultuous political times. The Republican aren’t reaching out to the Democrats and the Democrats have apparently decided that obstructionism is the way to go.
But the Democrats don’t want simply to be the party of no, and Republicans want to show that they can do something. Does that leave an opening for chronic fatigue syndrome (ME/CFS)? Emily thinks so.
She’s found that health issues (the Affordable Care Act aside) are largely bipartisan issues. Emily believes chronic fatigue syndrome is a small enough issue that it can skate below the radar a bit and attract both Democrats and Republicans. (Note that the last Congressional letters were signed by both Democrats and Republicans). She believes that ME/CFS could give legislators an opportunity to show that they can make progress.
How Chronic Fatigue Syndrome (ME/CFS) Got Funded (!): A Thought Experiment
I asked Emily to look forward to a future where ME/CFS receives ample funding and then to look back and figure out how we got there. This was her response:
“When I envision a world of ample ME/CFS funding, I see several “paths” which could lead us to the results we all want to see. There’s the path of profit where private industry (Pharma) recognizes the vast untapped potential market and decides to invest significant resources. There’s the path of the “benevolent billionaire,” an Elon Musk type who sweeps in with untold riches or the “Charlie Wilson level” placed appropriations benefactor who uses backroom deals and unseen politics to funnel money into our research programs.
When I step back and envision the inevitable success of the ME/CFS community, I don’t see a world where a savior figure rides in on a white horse and rescues us. I see a community that unifies, pulls together, and stands strong. I see an injustice made visible and a common awareness of that injustice, which drives action. I see brilliant science utilized by smart advocates informing common-sense bi-partisan policy driven by a unified and accepted community.
I see hard work, setbacks, and failures, but I ultimately come to two common truths. The world where we finally solve ME/CFS is a world where the US government (particularly the US Congress) integrates and acknowledges people with ME/CFS and most importantly it is a world where the ME/CFS community works together and works with others. I see a world where ME/CFS is not an isolated issue in a vacuum but a common ground for a broader context of health equity.”
Making a Difference Week for Chronic Fatigue Syndrome (ME/CFS)
ME/CFS advocacy has tended to be reactive, but it isn’t anymore. It’s pro-active now. Emily at the SMCI and ME Action are forging an organized, well thought-out effort designed to steadily increase our clout and produce the kinds of changes we want.
Next week the next step of the process begins. Building on the two recent Congressional letters, the SMCI and ME Action are going all in. They’re coordinating over 50 advocates, representing over 25 districts and territories, in a Washington DC Lobby Day with over 85+ congressional meetings in one day! The day will include a Capitol Hill briefing with a clip from Unrest, district actions and meetings across the country, and call-in and social media actions.
Recent Alert! Emily has discovered that the Affordable Care Act replacement bill that just passed the House eliminated a program called the Prevention and Public Health Fund (PPHF) which just so happens to fund the CDC’s program on ME/CFS. If the House bill passes in its present form the entire budget for the CDC’s ME/CFS program will be zeroed out. The SMCI will send out an alert on this. (Being able to respond quickly to something like this is why we have a professional advocate :))
2017 ME/CFS Advocacy Week
- Sign up for the fight to create a better future for ME/CFS here.
This is the most comprehensive effort to create change for ME/CFS in at least the last twenty years. Check out what Emily and the ME Action have cooked up for the big May ME/CFS Advocacy Week.
- 1 page summary sheet about ME/CFS: DOWNLOAD HERE
- Faces of ME/CFS: DOWNLOAD HERE
- Webinar Slides: How to conduct your local advocacy District Training: DOWNLOAD HERE
- Webinar Slides: How to plan your local advocacy District Training DOWNLOAD HERE
- State and District ME/CFS Data: DOWNLOAD HERE
- Capitol Hill Briefing Flyer: DOWNLOAD HERE
- Institute of Medicine Report Brief: DOWNLOAD HERE
- April 6, 2017 ME/CFS Appropriations Sign-on Letter: DOWNLOAD HERE
- ME/CFS By The Numbers Infographic: DOWNLOAD HERE
- About the Solve ME/CFS Initiative Flyer: DOWNLOAD HERE
- About #MEAction Flyer: DOWNLOAD HERE
- Advocacy Meetings Talking Points: DOWNLOAD HERE
- How to conduct a successful congressional meeting: District Meetings Webinar Training Wednesday May 3 – click here to view the webinar recording: https://youtu.be/ba5zgklexP8
- Capitol Hill ME/CFS Briefing: Thursday May 18
- Washington DC Capitol Hill Storm: Wednesday May 17
- Washington DC Call-in Day: Wednesday May 17
- Social Media Storm and International ME/CFS Awareness Day: Friday May 12
- Online Congressional Message Deadline: TBD
- District Actions and Meetings: Monday May 8 – Thursday May 11
- How to conduct a successful congressional meeting: District Meetings Webinar Training Wednesday May 3
- How to plan your local advocacy: District Meetings Webinar Training April 19 – click here to view the webinar recording: https://youtu.be/awLjiyYhexQ
- The first training for local district advocates was held on Wednesday April 19 at 10:00AM PT/1:00 PM ET and focused on setting up and preparing for your local meetings. This webinar featured our own Director of Advocacy and Public Relations, Emily Taylor and the Congressional Chair of #MEAction, Gail Cooper.
Find much more on the SMCI’s 2017 ME/CFS Advocacy Week Page.
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.