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Simmaron Goes to Washington

June 25, 2017

Simmaron, Meet CFSAC

simmaron logoStarting this week, Simmaron Research will serve as one of three non-voting organizations on the federal Chronic Fatigue Syndrome Advisory Committee that makes recommendations to the Assistant Secretary of Health and federal health agencies on the unmet needs of ME/CFS patients.

A federal advisory committee on ME/CFS may not seem like a hot topic but there’s no denying that it’s a vitally important one. Even at its current low levels, the federal government funds many times more ME/CFS research than any other entity. Federal decisions affect how this disease is diagnosed, viewed and treated.  Given that reach into ME/CFS matters, any committee with the potential to effect federal government action is vital indeed.

Since Simmaron Research is committed to redefining how ME/CFS is understood and treated, it will seek to add its voice to others on CFSAC to urge a stronger federal action plan.

An N of One

CFSAC (Chronic Fatigue Syndrome Advisory Committee) is actually special. Many advisory committees exist in HHS and its agencies, but almost all focus on broad biological issues. CFSAC is one of a select few focused entirely on one disease. Formed when the feds were under attack for misappropriation of CFS funds, CFSAC was meant to give ME/CFS insulation from the prevailing bias in federal agencies, and provide a direct avenue to decision makers at the Department of Health and Human Services.

IMG_3223It hasn’t always worked out that way. CFSAC has provided many strong recommendations to the Secretary or Assistant Secretary of Health over the years, some of which have been acted on, but many of which have not, to the deep frustration of the community.  The committee’s potential, though, is great. CFSAC’s twice yearly meetings provide one of the only constant forums for dialog between the ME/CFS community and federal health agencies, and it is a critical window into federal work, as well as a reminder of the extent of patients’ unmet need. It’s strength is its unique blend of government-appointed outside experts, advocates and federal representatives.

CFSAC has had it’s shining moments. Its rejection of Dr. Reeves’s reappointment as CDC ME/CFS chief almost certainly played a role in his ouster when the Obama administration came in. Arguably the most important report in ME/CFS’s history, the Institute of Medicine (IOM) report “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness“, came out of CFSAC recommendations and was initiated by the committee’s Designated Federal Officer. Similarly, the “NIH Pathways to Prevention” report on ME/CFS research needs, which provided the foundation for the upcoming establishment of the first NIH Research Centers for ME/CFS in over 15 years, emanated from CFSAC recommendations and NIH’s ex-officio to the committee.

A New CFSAC Member (Who Isn’t New to CFSAC)

Robert Miller and patients seek NIH funding at CFSAC, 2010

Robert Miller and patients seek NIH funding at CFSAC, 2010

ME/CFS advocate and Simmaron board member, Courtney Miller, will represent Simmaron Research and the ME/CFS patient community at CFSAC for the next two years. Married to longtime patient Bob Miller, Courtney is an experienced advocate who will continue to push the federal government to increase the resources this disease so desperately needs.

The Millers’ advocacy efforts, which date back decades, include many presentations at CFSAC and participation at ME/CFS meetings and conferences, such as the NIH State of the Knowledge Conference, the FDA Advisory Committee on Ampligen, the NIH Pathways to Prevention Working Group, and the Institute of Medicine Workshop.  Over the years, she and Bob Obama and Courtney questionhave met with numerous high-ranking federal officials, including soliciting a promise from President Obama at a Town Hall meeting which led to a high-ranking official from his administration engaging in ME/CFS matters. Working with many advocates, Courtney has helped prepare pages of recommendations to NIH to inform its renewed research program. Their goal has always been stronger research funding and access to treatments for ME/CFS patients.

A Look to the Future

Simmaron Research believes great opportunity for an impactful federal program on ME/CFS is ahead of us.

The compelling IOM and P2P reports and increasingly prominent ME/CFS research publications (including Simmaron collaborations) marked a turning point in 2015 for the federal government and the disease. Director Francis Collins announced a renewal of NIH’s ME/CFS research program and brought it under the leadership of Dr. Walter Koroshetz, Director of the National Institute for Neurological Diseases and Stroke (NINDS).  A comprehensive NIH Intramural Study is underway and new NIH research centers will soon be funded. A reinvigorated community advocacy campaign led by SolveMECFS and MEAction is generating increased Congressional and media scrutiny. The building blocks of a sustained, permanent program to improve federal action on ME/CFS are starting to come together.

Sacramento Millions Missing Rally June 2017

Sacramento Millions Missing Rally June 2017

“Given the advances in science and increased recognition of ME/CFS over the last couple of years, I believe we are facing the best opportunity in this disease’s history for a federal response worthy of patients’ crushing unmet need. And yet, we have a long way to go. I hope to work together with advocates to build on the momentum of CFSAC to achieve increasingly higher levels of interaction and engagement with federal agencies responsible for our health. The government’s primary goal has to be finding evidence-based treatments for seriously ill patients.” Courtney Miller

Simmaron hopes to continue the strong advocacy of the patient organizations that served for the last two years on CFSAC and the experts who continue to serve.

CFSAC:  The Nuts and Bolts

One of ten advisory committees overseen by the Office of the Assistant Secretary of Health (OASH), CFSAC is tasked with providing “advice and recommendations” to the federal government on everything from federal research efforts to disability to provider information.

CFSAC consists of 13 voting members from the research, healthcare and patient communities, 8 non-voting ex-officio members from branches of the federal government (CDC, NIH, FDA, etc.)  and 3 non-voting members from patient organizations.  The three non-voting members from patient organizations now include Simmaron Research, The Massachusetts CFIDS/ME & FM Association and ME Action.

CFSAC holds two two-day meetings a year: a webinar-based meeting and a public meeting.  The meetings usually contain presentations on ME/CFS from invited experts, patients and caregivers; reports from internal CFSAC groups on topics of interest; reports from the NIH, CDC and other branches of the federal government on their activities; and conclude with recommendations to the Assistant Secretary of Health from CFSAC itself.

Courtney Miller will be presenting on Simmaron’s behalf in the next CFSAC meeting in four days on June 29th from 1:30 to 2:30 pm EST. Check out CFSAC’s agenda and listen to her’s and other’s presentation using this call in number (1-888-788-9429) and Passcode: 4510479

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  • aquafit

    June 25, 2017 at 6:42 pm - Reply

    Cort, does any researcher or group ask for funds to research the effects of manufactured chemicals derived from petroleum and coal tar in our foods, medicines, personal grooming products etc and whether they may be predisposing us to vulnerability or of or damage to the immune system and/or connective tissues?

  • Cort Johnson

    June 25, 2017 at 9:55 pm - Reply

    I haven’t heard of that in ME/CFS and I hope that someone is outside of the field. I imagine the funding for that is pretty low, though, unfortunately.

  • nancy horan

    June 25, 2017 at 11:42 pm - Reply

    Cort, How do i access your website?

  • Audrey Brimson

    June 26, 2017 at 1:13 am - Reply

    Whether manufactured chemicals are affecting us? I am certain they do, from the effects I have suffered over and over again. But like the cigarette & asbestos industry, that will not be something the chemical industry will want highlighted, too many profits both on industrial and governmental level for that to be a priority. The percentage of collateral damage is considered (if considered at all) to be insignificant. I agree with Cort, unfortunately the funding, if any, is pretty low.

  • Dee

    June 26, 2017 at 3:48 pm - Reply

    I have often considered the impact chemicals have on our immune system. I have also thought that the reason more women have autoimmune disease may lie in the fact that women by far are exposed to more chemicals than men. Exposure for women can be found in all of the personal care products (shampoo, makeup, nail polish, hair color, perfume etc) , cleaning products (air fresheners, detergents, bathroom cleaning items etc). Many of these toxic chemicals are hormone disruptors. These chemicals together with an exposure to an infection (bacteria, viral or fungal) may be a recipe for a broken immune system.

  • Learner1

    June 28, 2017 at 2:13 pm - Reply

    Toxic chemicals definitely affect how our metabolic pathways work and can interfere with ATP production in mitochondria.

    I have 2 questions –

    1) Will a summary of what happened at (or a recording) of this meeting be made available?

    2) Is anything being done to bring up the issue of our access to and ability to pay for substances ME/CFS patients need that are nutritional supplements or non-FDA approved or off label use of drugs? I’m going broke paying out of pocket for pregnenolone, DHEA, female testosterone, carnitine, CoQ10, NT Factor, and high dose injectible B12. And then there’s Rituximab, suramin, GCMaf, etc. People can’t get well if they can’t afford these substances and insurance won’t cover them. (I don’t believe one magical, undiscovered pill will help all of us…it may help, but many of us will need other things, too…)

    Thank you for these important efforts!

    • Cort Johnson

      July 5, 2017 at 4:21 pm - Reply

      I believe a copy of the meeting will be made. I just can’t forsee insurance companies paying for those non-FDA approved treatments unfortunately.

  • Susan Frei

    July 24, 2017 at 2:33 pm - Reply

    Cort, I am a person with ME/CFIDS. My career as a successful federal grant writer working with State of NJ Sept of Education was halted by this crippling disease. As a graduate student in social work, I am adept at research as well as helping communities at large. Currently working on my second manuscript, my writing breaks are filled with searching the Web and reading summaries from research regarding ME/CFIDS. I would like to help. Comnentaries? Is there a place on Web I could write about my knowledge and personal,experience living with this disease? This is my own motivation to survive. That you. I continue to receive updates from health rising