ME/CFS Advocates Press National Institutes of Health (NIH) for Real Change: Is It Coming?

[Cort]

Uniting the ME/CFS community is not easy, but it has never been more important than right now. One thing we all agree on is the urgent need for vastly increased funding at the National Institutes of Health, our nation’s scientific research machine. When two federally funded reports told the NIH that it was time to get their butt (excuse my French) in gear and invest in ME/CFS research, a number of advocates seized the opportunity to push even harder for substantive change.

[fright]

[/fright]Among the efforts, a recent one was aimed at demonstrating consensus among advocacy groups on a platform of immediate next steps toward full funding at NIH. Courtney Miller worked with ME/CFS advocacy organizations to fashion a 5-point platform that outlined the next steps needed at the NIH and, with endorsement of a broad set of groups, sent it to Secretary of Health Burwell and NIH Director Collins on September 29.

The 1-page platform builds on engagement by patients, experts and advocates since the release of the IOM and P2P reports. Last spring, more than 500 patients and caregivers sent emails to Secretary Burwell and Director Collins highlighting the “urgent need for research” validated by both panels. CFSAC, with significant input from advocates, made recommendations to operationalize the IOM report. SolveMECFS hosted a powerful Congressional Briefing with Morgan Fairchild, and advocates engaged meaningfully with the Senate Appropriations Committee after it zeroed out the already miniscule funds earmarked for CFS in the CDC budget. MEAction has provided a broad and busy platform for change.

The confluence of the two federal reports, the results of the Chronic Fatigue Initiative's Lipkin/Hornig immune study, advocacy efforts and numerous powerful media stories has created a demand for change rarely been seen before. The IOM report, in particular, has had a long reach. Six months later, stories highlighting it are still appearing in the media.

When asked, Courtney stressed the need to demonstrate our unity. “It is so important to show the Secretary and NIH at every turn that we are united in our goal of equal funding for the science that can diagnose, treat and cure our disease. The more we act in concert, the more we will achieve.”

Reports suggest that something is happening at the NIH. Exactly what is not clear. Stay tuned!

Advocates Letter to the NIH

To: Secretary of Health and Human Services Sylvia Burwell, National Institutes of Health Director Francis Collins

Building an ME/CFS Research Initiative at NIH that Works: a Community Approach

The ME/CFS community is united in its goal of NIH funding commensurate with the burden and costs of our disease, and on par with research funding for diseases like multiple sclerosis. The recent reports by the Institute of Medicine and NIH Pathways to Prevention Program validate the “urgent need” to research ME/CFS. They are a call to action.

We understand the NIH is evaluating next steps in addressing the gaps in ME/CFS science. We believe the following elements are essential and immediate next steps for NIH to build an ME/CFS initiative that catalyzes recent advances and works for the long term to return more than one million Americans to health. They are consistent with the blueprint outlined in the Pathways to Prevention report and recommendations from the Secretary’s Chronic Fatigue Syndrome Advisory Committee.

Essential, Immediate Steps for NIH to Build an ME/CFS Research Initiative that Works:

1. Assign ME/CFS to a strong, well-funded Institute like NINDS, to enable strategic planning and structural accountability.
2. Fund a mix of intramural and extramural research (as NIH does for Multiple Sclerosis and scores of other diseases), including a focus on identifying diagnostic biomarkers.
3. Form and fund translational networks and Centers of Excellence, utilizing clinical experts in the field to build on recent collaborations and findings.
4. Design and fund clinical trials for drug development so ME/CFS patients can have our AZT; the government can catalyze private investment by the pharmaceutical industry; and scientists can study the responders.
5. Present a plan to ramp up funding to a per-patient level on par with multiple sclerosis over the next two to three years.

Multiple sclerosis (MS) is a strong example that embodies the promise of scientific research at NIH. Thirty years ago, MS – with similar symptoms – was as stigmatized as ME/CFS is now. Today MS is treatable with one of thirteen FDA-approved medications because of NIH-led science. This gives us great confidence in the power of the NIH to produce results for ME/CFS.

With a strong investment in NIH research, ME/CFS patients are within reach of diagnostic tests and FDA-approved treatments. In 2012, President Obama asked NIH to elevate ME/CFS research, and the IOM and P2P reports provide the roadmap and scientific imperative. Together, let’s build an ME/CFS research initiative that works for patients' health and scientific advancement.

• Courtney and Robert Miller (25-year patient) : patient advocates
• Solve ME/CFS Initiative: Los Angeles, CA, National ME/CFS Association
• Health Rising: online ME/CFS and FM support organization
• Simmaron Research, Incline Village, NV: ME/CFS Research Foundation
• Massachusetts CFIDS/ME & FM Association: ME/CFS support organization
• Open Medicine Foundation, Mountain View, CA: ME/CFS Research Foundation
• New Jersey ME/CFS Association, Florham, NJ: ME/CFS support organization
• ProHealth: online patient community
• Myalgic Encephalomyelitis Action Network: online ME/CFS advocacy organization
• Workwell Foundation, Ripon, CA: ME/CFS Research Foundation

(Check out a heartbreaking interview with Ron Davis on the BBC: "I'm in a Race to Figure Out a Cure Before My Son Dies")

 

[Obie]

Well written advocacy letter! Let's keep working together to find treatments and a cure. We want Whitney, all the other severe patients and rest of us to get well

 

[Cort]

Well written advocacy letter! Let's keep working together to find treatments and a cure. We want Whitney, all the other severe patients and rest of us to get well

I have a good feeling about the NIH right now! Fingers crossed!

 

[Esther Siebert]

Hi Cort,

Who is Courtney Miller? Sorry but I don't recognize the name.

I believe the problem with our funding being zeroed out was in the House, not the Senate. Is that right?

Do any of the various different organizations advocating for ME/CFS have a full time public relations and lobbying professional working who can be expected to know things like when to lobby appropriations committees? Because as I understand it, no one in our community knew that we should have been making our case (with all of the other disease advocates) during a period of time before the committee staff prepared its suggested budget.

I haven't heard whether the $5 million will actually be added back into the budget or not, before or after the conference committee between the two houses meet. And of course this put us in a terrible position to bring up actually raising the amount. We really can't afford to make mistakes like this again. Hope you are as well as possible! Best, Esther

 

[Cort]

Hi Cort,

Who is Courtney Miller? Sorry but I don't recognize the name.

I believe the problem with our funding being zeroed out was in the House, not the Senate. Is that right?

Do any of the various different organizations advocating for ME/CFS have a full time public relations and lobbying professional working who can be expected to know things like when to lobby appropriations committees? Because as I understand it, no one in our community knew that we should have been making our case (with all of the other disease advocates) during a period of time before the committee staff prepared its suggested budget.

I haven't heard whether the $5 million will actually be added back into the budget or not, before or after the conference committee between the two houses meet. And of course this put us in a terrible position to bring up actually raising the amount. We really can't afford to make mistakes like this again. Hope you are as well as possible! Best, Esther

Courtney is Bob Miller's wife. She is a professional advocate in a way - she works for a large union and is very familiar with the ways of Congress and has worked on many ME/CFS advocacy campaigns with Bob.

I believe that MEAction is in the process of engaging a lobbyist. I will be posting some resources soon on timelines and who to get in touch with etc. You're right we didn't make our case; if we had made it the funds would be there. No word yet on whether the money will be added back yet.

Yes, I believe the problem was in the house not the Senate.

 

[Cort]

The poll suggest that better treatment (education for doctors and creating Centers of Excellence) plus more research funding - almost universal agreement on that - are felt to be the biggest priorities.

 

[Courtney Miller]

Hi Cort,

Who is Courtney Miller? Sorry but I don't recognize the name.

I believe the problem with our funding being zeroed out was in the House, not the Senate. Is that right?

Do any of the various different organizations advocating for ME/CFS have a full time public relations and lobbying professional working who can be expected to know things like when to lobby appropriations committees? Because as I understand it, no one in our community knew that we should have been making our case (with all of the other disease advocates) during a period of time before the committee staff prepared its suggested budget.

I haven't heard whether the $5 million will actually be added back into the budget or not, before or after the conference committee between the two houses meet. And of course this put us in a terrible position to bring up actually raising the amount. We really can't afford to make mistakes like this again. Hope you are as well as possible! Best, Esther

Hi Esther, I'm Courtney Miller. Nice to meet you. My husband, Robert Miller, has had ME/CFS for 25 years. For as long as I can remember, we have been active in advocating for more research funding from federal health agencies, as well as FDA approval of the first ME/CFS treatment, so that pharma will invest in clinical trials for our disease. I also am on the Board of Simmaron Research Foundation, which has played an active role in the Lipkin/Hornig studies Cort referenced. In 2011, Bob got our family into the first Presidential Town Hall in Reno, and I was chosen to ask a question of President Obama, resulting in the Obama Promise. We have used his promise to elevate CFS research at NIH to push very hard for a strong federal commitment. The Institute of Medicine and NIH Pathways to Prevention (P2P) reports are powerful catalysts, and we have an opportunity like no other time in this disease. I truly believe that uniting our patient community, and coordinating advocacy efforts is essential to getting the strongest response from NIH to the "urgent need" identified by IOM which we all know day in and day out.

You are absolutely right that our disease has lacked a national presence in Congress and with the federal health agencies. Bob and I have done a lot of work in Congress with others in the community, and there is recognition among advocacy groups that now is the time to renew our efforts around funding and Congress. I initiated the 1-page platform to demonstrate unity in core demands for next steps at NIH, reflecting the sentiment of most advocacy organizations in our disease. NIH has to respond to the IOM and P2P reports because of IOM's stature in the scientific community, and many are working to make that response a strong one.

I believe Cort is right that MEAction is doing more with Congress, and their platform to find people in many states and districts is really important. I believe what we need is organized advocacy and a plan to have our patients in front of their representatives in Congress consistently and memorably. MS has orange shirts on patients every year in Congress. Congresspeople know the orange shirts. We need to organize that, and we need to hone consistent messages and asks. A lobbyist will be helpful, but only if that person actively engages the patient and caregiver community to be the central part of pressing our elected officials to fund the research and change we need. Our advocacy groups need to come together and staff that engagement, and we have to figure out how to fund it. If ALS patients who are so ill that they can't speak can show up in the Capitol with their caregivers - and they do - our community has to show up if we want change.

Lastly, it was the Senate Appropriations Committee that slashed the CDC earmark for CFS research, infinitesimal though it is. Congress is deadlocked on budgets, and there is no resolution on next year's funding. The existing budget is "continued" through Dec as is, so nothing is cut, nothing is added. Your observation that we can't go up in funding if our representatives can zero our existing funds is right on. We and other advocates organized emails to save that funding, and we were copied on at least 100 into the Appropriations staffers. That got attention, but we have to do the work with our Congresspeople from now on.

We will keep working with other advocates to make common demands, engage patients in action, and move the Secretary of Health, Director of NIH, and Congress to invest in science, treatment and cures for ME/CFS patients equal to other diseases. The more we do together, the more we will achieve.

My best to you, Courtney Miller