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In the third of a series of interviews since full-time ME/CFS advocate Emily Taylor joined Solve ME, I talked to her about what the heck is going with advocacy.

I learned a lot. In particular, I learned there’s a lot going on that I didn’t know about. While I was “sleeping” others across the U.S.  – from advocates in Ca to Florida, from Solve ME to ME Action to individuals – are forging ahead, building relationships, enrolling others in our fight, and building the momentum we need to get chronic fatigue syndrome (ME/CFS) the resources it deserves.

We started with the quite remarkable 2019 Advocacy Day.

The first interview with Emily

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

Momentum Building

“Honestly, we are further along here in year three (of the five-year plan) than I would have expected!”  Emily Taylor

Advocacy Day 2019 was a real milestone for the ME/CFS community.  We more than doubled the number of congressional meetings and quintupled the number of advocates walking the halls of DC.

Two hundred and forty registered ME/CFS advocates attended 185 meetings with members of Congress and their staff. Twenty-three of those meetings were with actual members of Congress. Of the 239 meetings requested, only five (about 2%) were denied or refused.

The Tip of the Spear

The advocates walking the halls of Congress are the tip of the spear for ME/CFS. They’re pushing themselves, getting trained, and then walking into strangers’ offices and baring their souls. None of it is easy, but all of it is inspiring.

Emily Taylor

Solve ME’s full-time ME/CFS advocate Emily Taylor talks about where we are in year three of her five year plan

Emily Taylor, Director of Advocacy and Community Relations for Solve ME/CFS Initiative, said our Advocacy Days (now more like Advocacy Weeks) are not like other groups’ Advocacy Days. They’re highly strategic efforts designed to build support in Congress and to build effective, engaged advocates who make a difference and know it. What could be more impactful than knowing that you are making a difference for potentially millions of people with ME/CFS across the globe?

“With these events, we’re not just ‘checking the box’ of doing an in-person meeting. Many large groups treat their advocacy events like that – just a big photo op with no real substance.

 

ME/CFS Advocacy Day and ME/CFS Advocacy Week is about more than just getting face-time with members (even though that is a really great indicator of our success!).

 

One of the most important parts is getting folks engaged, excited, and comfortable with the process of congressional advocacy so that they continue to be involved and build momentum on future efforts as well.

For Advocacy Day, you never want to say “See you next year”. We say: “You’ll be hearing from me, and many like me… We’ll be in touch.”  Emily Taylor

Rivka’s riveting plea during a Town Hall meeting and Mass ME/CFS and FM’s work enrolled Senator Markey in leading the fight for ME/CFS

The goal is to touch congresspeople and their staffers and get them enrolled in our fight. Representing the aspirations of the most powerful nation on earth, they are, after all, in a unique position to make a difference. They oversee what is far and away the largest funder of medical research (National Institutes of Health (NIH)) in the world. More and more – touched by our stories – are jumping at the opportunity to do so.

Some have become champions. They share our commitment, are aligned with us and are working hard to support us. Our adventure is now their adventure. Our success will be their success.

“Obviously, building those relationships is key and the more relationships we have, the stronger we are. But it’s the strength of those relationships that matter even more than the sheer quantity of them. The quantity of those relationships diminish our overall resistance to our work, but the “diamonds in the rough” – the strong champion-level relationships that develop – are key to driving our efforts forward towards what has always been our singular priority – sustained set-aside federal funding streams for ME/CFS research.

 

Senator Markey as champion is an excellent example of what a strong relationship can do. He’s single-handedly made more headway in the Senate for us than any other individual Senator. That relationship took time, trust, and cultivation. It didn’t emerge from a single meeting. It took years, lots of energy, and hundreds of hours of collaboration and coordination. (Proper Kudos to Rivka of Mass ME for building such a strong relationship – go Rivka!)

 

We have many goals, but our big goal is to get a bill passed that dramatically increases funding for ME/CFS. Given the reluctance of many Congressmen, particularly Republicans, to tell the NIH how to do its business – that’s not easy. On the other hand, we have a compelling story with the potential to soften even the hardest of hearts – a million or so sick people with a highly disabling illness being ignored by the NIH – for decades!  That’s a story that could get even the most traditional politicians into action.”  Emily Taylor

I asked Emily if she has a number in her head – like when this number of Congresspeople sign onto to a Resolution, man, we’re ready to go for the gusto – a bill telling the NIH to spend X amount of dollars on ME/CFS or something like that?

“I wish it was that simple!.

 

Sometimes it is just a numbers game – get enough people to sign on and it’s time to go for the ‘big kahuna’. Congress, though, is a complex animal and getting a bill passed is not easy. It requires a multidimensional effort that can be catapulted to success by an unforeseen event or slammed back down to earth.

 

More often it’s positioning, strategy, and timing. And, sometimes it’s just dumb luck! I’ve certainly had past success with just being in the right place at the right time with the right bill when a particular news story hit the airwaves and your legislative proposal is the easy solution.”

The Big Five

Emily said what we need to be successful legislatively is:

  1. good, evidence-based policy with a positive budget review;
  2. strong champions in well-placed political positions willing to sponsor this policy;
  3. broad-based groundswell to generate political will;
  4. convenient timing politically to avoid being trapped in legislative deadlocks; and
  5. resources to pull all these together seamlessly!

“My strategy for the past three years has been to try and build these items (simultaneously) with a clear plan of action. And we are getting there – we are making strong progress. And, we are also being flexible and pouncing on opportunities as they present themselves.”

Bipartisan Approach

It takes a strategic approach. Being bipartisan – getting support from both political parties – in this hyper-partisan political era is part of our strategy.

“Being bipartisan is absolutely necessary for our future success. If our early actions are branded by one political party, it would make any future funding efforts or stand-alone legislation exponentially more difficult.

 

Emphasizing bipartisanship was a highly strategic and calculated decision by the leaders of our advocacy team (Solve ME, MEAction, & MassME). In fact, much of our strategy was designed and executed to maintain ME/CFS as a BIPARTISAN issue. You can see the success of that effort in the 1:1 ratio of cosponsors of the Senate resolution that was passed.

 

This was very much intentional and we coordinated very closely with advocates in key Republican areas (advocates who had been working with these offices for YEARS in some cases!) to secure their support. The entire effort, including the composition of the language, was done with the goal of making our issue relevant and “safe” for both parties to lend their support.

 

We are very aware that we have more support in the Democratic camp and wanted to ensure that we remained a bipartisan issue. So, we kept all original co-sponsors in a “Noah’s Ark” fashion; one Democrat and one Republican.  In order to ensure that the original co-sponsors of the resolution remained a 1:1 ratio of Democrats and Republicans, we worked closely with staff of our traditionally strong Democratic supporters. We were transparent and clear with our intent and we were resoundingly well received by our democratic allies. I was very pleased with the response on both sides and I feel it indicates a strong respect from staff about our issue, our political savvy, and our organization.”

Sneak Attack?

I’d been reading Robert Caro’s fascinating biography of Robert Moses, the man responsible for building many of the great public works in New York City. Moses was a bill drafter par excellence. Time and again, he was able to get language inserted into bills which his opponents were later dismayed to find gave him great power. 

I asked if it was possible to kind of sneak something into a bill that supports ME/CFS or is everything too closely watched now? Or would something like that cause problems later on?

“I have always been a big fan of the ‘paperclip’ strategy. Meaning, that you attach your language or bill (like with a paperclip) to some other popular legislation. When it comes to funding, the paperclip strategy can only get you so far.

 

Rather than calling it a “sneak attack”, though, I call it being opportunistic. Sometimes it’s good timing; sometimes it’s the right champion; sometimes it’s just plain luck. I’ve already pursued some opportunities here and there to implement this strategy. All unsuccessful so far. But, I won’t stop trying.”

The Senate Resolution

“ME/CFS has been in the shadows for too long. Our resolution is just one step to help shine light on this condition and what we can collectively do to help improve the quality of life of those impacted.”  Senator Markey

The Senate resolution, “Supporting the Goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day” was unanimously passed on May 23rd of last year. MEAction provided a rundown of how this happened here.

While the resolution doesn’t have the power of law, it’s an incredible educational tool. It states that ME/CFS is ‘‘a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of…between 836,000 and 2.5 million individuals” and causes up to $24 billion in economic losses yearly.  No known cures are present, 1⁄4 of ME/CFS patients are house or bedbound, 50 to 75 percent of those afflicted cannot work or attend school, and that the CDC calls ME/CFS “America’s Hidden Health Epidemic”.

As so often happens, the Resolution started with a single person. An advocate proposed the resolution to the late John McCain who agreed to co-sponsor it if a Democratic co-sponsor could be found. Enter the intrepid Rivka, whose emotional plea to Sen. Markey during a townhall meeting got the Democratic co-sponsor we needed.  Then, when McCain fell ill, a family from Maine stepped up and enrolled Susan Collins to be the Republican co-sponsor. An ally shows up…

Time ran out in 2018 but in 2019, with three new Senators signing on (Senators Hoeven (R-ND), Casey (D-PA), and Cramer (R-ND)), the Resolution passed in the Senate. MEAction reported that “to our knowledge, this is the first piece of U.S. legislation that has ever been passed for ME/CFS exclusively.”

  • Thanks to ME Action you can actually listen to the Senate Resolution being read aloud here.

Show ME the Money!

Now that the Senate Resolution has passed, I asked what our next step in the Senate was. The important thing I learned about the Resolution was when it was passed.

“The resolution was an amazing victory, to be sure. But, at its core it is a symbolic victory. Resolutions do not carry the force of law. They only express the sentiments of the Senate. The timing on the resolution is what was key, because it was passed unanimously right before the Senate decided the fate of our FUNDING REQUEST.

 

In my mind, it is our funding request that is the highest priority. “SHOW ME THE MONEY!!!!”

 

I began my work ‘paving the way’ for an increase in funding back in October of 2018 while meeting with committee members and appropriations staff, even while the FY19 budget wasn’t even finalized! I sat down with many folks on that trip and told them point blank: “I am asking for an increase next year.” I truly celebrate this moment. To me, it felt like we were finally playing offense instead of defense for the first time.

 

I followed up this effort in February 2019 when members of my board of directors and I ‘pounded the pavement’ in some of the worst winter weather DC had to offer. All of this was laying groundwork behind the scenes for the big mobilization in March, April, and May.”

Hitting the Wall at the CDC

“A well-crafted and strongly supported request…”

Then, Emily hit the wall at the CDC. The CDC’s ME/CFS program is the odd man out in federal bureaucracy. CDC funding for ME/CFS is a line item – meaning the funding has to be secured in the budget every year or the program disappears. That’s kind of scary but it also provides an opportunity.  CDC funding for ME/CFS is under control of Congress – not the CDC. It’s the only ME/CFS program whose funding is not controlled by an agency. That provides some potential leeway.

Emily’s ears perked up when a key staffer on the Appropriations committee suddenly began to rattle off questions about ME/CFS.  She asked point blank if we were in a position to ask for more funding. The answer was yes. The tea leaves looked right for a doubling in funding (to $10 million). The extra $5 million could fund the first ME/CFS prevalence study in 12 years.

CDC funding for ME/CFS goes for border wall

Increased CDC funding for ME/CFS was on track until the Trump administration raided the federal budget to build “the wall”.

Then we – and many others – hit the Wall.  After President Trump was unable to get a bill passed authorizing money for a wall between the U.S. and Mexico, he turned to raiding the rest of the federal budget for it.  Every project whose funding had not been tied down – and many which had – took a hit – and the opportunity to get even a little more money for ME/CFS vanished – despite what committee staff called a “well-crafted and strongly supported request.”

It could have been worse. The Trump administration wanted to eliminate funding for the CDC’s program for ME/CFS program entirely, but advocates were able to preserve the current funding.

Another Ally and a Surprise 90-Day Requirement Pops Up

Out of the blue an ally shows up

Out of the blue another ally shows up

Plus, there was a silver lining. The staffer Emily learned the news from was upset – surprisingly upset – at the loss of the new funding. She, too, turned out to be an unexpected ally in disguise. She turned to Emily and suggested another approach.

That culminated in a surprise 90-day requirement from the House to the HHS to justify its funding for ME/CFS using the language that ME/CFS advocates crafted. Noting that the only federal advisory panel for ME/CFS (CFSAC) had been eliminated, the requirement stated:

There remains an urgent need for U.S. inter-agency coordination and collaboration with stakeholders to adequately address the needs of the ME/CFS health crisis. In the absence of CFSAC, the Committee requests that HHS submit a plan within 90 days of enactment of this Act outlining how the Department intends to address the crisis in ME/CFS clinical care; accelerate drug development for ME/CFS; and collaborate across HHS agencies and stakeholders.”

Three specific areas were addressed:

  • the crisis in ME/CFS clinical care;
  • accelerating drug development; and
  • facilitating improved interagency collaboration.

We’ll see whether or not HHS will actually honor the 90-day requirement but the HHS is now on notice that Congress is watching – and we know we have another ally in high places.

Florida Breaks Through!

“The profound disease burden of ME/CFS, the paucity of knowledge about its cause, and the absence of diagnostic tools and treatments calls for additional investment and action.” Letter from 27 Florida Congressmen to NIH Director Francis Collins

 

bilirakis

MEAction, Solve ME and half a dozen advocates lead the way for the entire Florida delegation to sign onto a letter to Francis Collins asking for more resources. Twenty-seven more ME/CFS allies.

Representative Bilirakis of Florida sits on the powerful Energy and Commerce Committee on Public Health – a critical committee for us. Emily had an in with him though a staffer she knew by Solve ME’s support of his Clinical Treatment Act. Given his connection to ALS, (he was also involved in the 21st Century Cures) he’s been very clued in to chronic illness issues – but not so much on ME/CFS – until now.

Congressmen Bilirakis and his Florida colleague, Darren Soto, are leading the fight to get the whole Florida delegation to sign a letter urging Francis Collins and the NIH to dramatically increase funding for ME/CFS.

Amazingly, the effort succeeded! Emily Taylor from Solve ME and Laura Bucholtz – the leader of the MEAction Florida group, and a half dozen patients and caregivers produced a week of emails and phone calls that resulted in the entire state delegation – all 27 of them – signing onto a letter to NIH Director Collins, urging him to increase funding and emphasizing the lack of treatment trials for patients.  Ten of the members sit on powerful committees or subcommittees critical to our success.

Next up for Florida advocates – their Senators.

Better Access to Medical Care

ME/CFS Advocacy day last May included request for a hearing at the House Committee on Energy and Commerce – not on research, but for a new topic for us at the federal level – access and availability to clinical care.

Solve ME used Mary Dimmock’s work capturing the crisis facing ME/CFS regarding clinical care to put together a letter to the Committee. The goal – raise the alarm that only a handful of ME/CFS experts are available to treat a million sick people in this country.

More allies we were unaware of pop up.

Things started happening. Three bipartisan requests were made to hold a hearing on the topic, including one request from a Representative (Representative Jones) they hardly knew and had had only one meeting with.  (Another ally shows up out of the blue.)

Getting a hearing is probably a two to three-year project but here’s the thing – hearings are a crucial stepping-stone towards getting legislation passed. No hearing – no legislation.

Hearings enroll the Committee members in that: “Hey, we have a problem here”.  After a hearing, the staff members get busy, they and the stakeholders sit down with agency officials, identify key issues, estimate funding and form a bill. A year or two after a hearing, legislation is introduced.

It’s no surprise that this isn’t an easy or quick process. Legislators are deluged with requests to get things done. Getting a hearing on the books means you’ve convinced the committee members to support you and that you have some real backing.

With several Committee members backing us, now we have a chance for legislation that will do something about the lack of medical care for people with ME/CFS.

The Gist

  • Whoa! In one year the number of advocates walking the halls of Congress doubled and our meetings with Congressmen and women quintupled!
  • We’re built strong relationships with influential Senators. Senator Markey of Mass – is leading the charge for us.
  • The five things we need to be successful on the federal level are (1) good, evidence-based policy; (2) strong champions in well-placed political positions; (3) broad-based groundswell to generate political will; (4) convenient timing politically to avoid being trapped in legislative deadlocks; and (5) the resources to pull all these together seamlessly…
  • Last year a Senate Resolution passed supporting ME/CFS. The resolution didn’t provide funding but it indicated that our support is growing.
  • More CDC funding was there for the taking – until we hit the wall. After President Trump raided the federal budget to build the wall our funding – and others funding – disappeared.
  • A top-level staffer upset at the loss of funding worked with Emily Taylor to send a requirement to the NIH asking them how they were going to respond to the urgent crisis occurring in ME/CFS.
  • The Trump administration’s attempt to zero out funding for the CDC’s ME/CFS program was thwarted.
  • Other unexpected allies popped up during a Committee meeting asking for a hearing to address the crisis in clinical care present in ME/CFS.
  • Lead by Rep. Bilirakis, the entire Florida Congressional delegation signed a letter requesting NIH Director Francis Collins to increase funding for ME/CFS.
  • ME/CFS researchers can now apply for funding in the 350 million dollar e Peer-Reviewed Medical Research Program provided by Congress.
  • In year three of Emily Taylor’s five-year plan to get substantially more money for ME/CFS, Emily said we’re ahead of where she expected us to be.
  • Advocacy Day 2020 is coming up in April!

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ME/CFS Researchers Now Eligible for New Funding Source

Another goal was to add ME/CFS to the list of disease eligible for the Peer-Reviewed Medical Research Program provided by Congress.

me/CFS funding

A new source of funding is now available for ME/CFS researchers. (Will they use it?)

The DOD effort demonstrated again just how quirky advocacy can be at the federal level. First the House looked like it was going to eliminate the entire Peer Reviewed Medical Research Program (PRMRP), our intended target. The House didn’t end up getting rid of the program but – almost as a consolation prize – ME/CFS was unexpectedly added to a program they hadn’t requested – the Combat Readiness Research Program.

It took two years, but Solve ME  was able to successfully add ME/CFS to the $350 million PRMRP. That means we have a new potential funding source – we’re once again one of forty-four diseases which can apply for funding under this Department of Defense program. ME/CFS researchers have used this program in the past to get funding.

Diseases eligible for PRMRP funding:

“… inflammatory bowel diseases, interstitial cystitis, lupus, metals toxicology, mitochondrial disease, multiple sclerosis, musculoskeletal health, myalgic encephalomyelitis/chronic fatigue syndrome, myotonic dystrophy, neurofibromatosis, nutrition optimization, pancreatitis, Parkinson’s…

Congress Issues ME/CFS Direction to NIH Leadership

Statements were also inserted into the 2020 federal budget urging the NIH Director to increase funding, reach a consensus on the ME/CFS case definition, and create ways to incentivize researchers to enter this field.

The Long Game – Building Partnerships

Making a difference in ME/CFS isn’t just about ME/CFS bills and actions: it also means building partnerships with other groups and supporting broad efforts that support medical research, disability, treatment, etc.

“Focusing on the ‘long-game’ means supporting efforts that don’t focus specifically on ME/CFS but which have the potential to benefit this community over time. Partnering with other health organizations builds allies.

 

One thing you may have noticed is Solve ME taking a more active position on legislation that is less ‘ME centric’. Like our support of the 21st Century Cures Act, the Disability Integration Act, or the Clinical Treatment Act. All of these bills help ME research and people with ME indirectly. But why waste our limited resources on them? Because it’s part of the long-game.

 

Supporting other efforts which do not directly impact ME is calculated. In doing so, Solve ME is looking for potential ‘paperclip’ partners and also demonstrating ourselves as a valuable player or partner for legislative success. The more of this we do, the more we’ll be invited and included for future efforts, which opens up more opportunities. For this reason, I encourage the community to embrace these efforts which may not be an immediate boost to ME, but are definitely part of the long-game for success.

 

For instance, as one of the “Friends of PCORI”, Solve ME supported legislation that funded the Patient-Centered Outcomes Research Institute (PCORI) for another ten years. PCORI is a biomedical research institute focused on providing the best outcomes for patients.” Emily Taylor

The Election Year Blues

I asked Emily if, this being an election year, we were going to get lost in the mix – or would opportunities present themselves?

“Honestly, election years are terrible for actually getting work done. Everyone is jostling for media coverage and sound bytes rather than really getting policy passed. It slows our work, to a crawl sometimes.

Any opportunities with candidates are the death knell for bipartisanship. We may get a short-term bump for the media exposure, but in the long run we’ve ruined any chance of getting support from the other side of the aisle.”

The Big Plan!

When you started at Solve ME/CFS you had a five-year plan. I must say that it’s so great to finally have a grand plan! We’re at year three. Acknowledging that advocacy at the federal level, in particular, is inherently risky and hard to predict, how are we doing in year three?

“Honestly, we are further along here in year three than I would have expected! We accomplished a briefing, a resolution, coalition building, three advocacy days and established amazing partnerships with others – unifying and coordinating our efforts across the country.

 

I am so humbled and awe-struck by what we have accomplished so far on the Congressional front. And I truly believe that if we keep growing and keep this momentum, we’ll hit our goals in 2 years.”

April 2020 – Advocacy Day!

Advocacy Day 2020

The big advocacy day of the year – the day we swarm the Hill enrolling everyone in sight in supporting ME/CFS – is coming up in just two months. I don’t see this as supporting just us. We’re supporting everyone in righting an injustice.

Congressmen and women want to make a difference – and we’re providing them the opportunity to do just that – to know that what they do matters.

Ditto with the NIH. Whatever they say, whatever their justifications are, can the people working at the NIH really be happy knowing they’re neglecting a million ill people in the U.S.? No matter how far they’ve shoved that down, no matter how far they’ve numbed themselves to that figure, it’s got to hurt somewhere. So let’s fix it and relieve all of us – patients, caregivers, bureaucrats, politicians –  of a burden.

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