Testimonies & Takes on the April 27 CDC Research Stakeholder’s Meeting – and What Lies Ahead

"Maybe this is one of those critical moments in politics where there's an opportunity to influence the direction of things." – Rich Van Konynenburg

“The CFS community, researchers, and clinicians spoke with resonance, lasting clarity. Change is needed, but it must be the right change.” – Craig Maupin

ME/CFS patients & advocates had 5-minute time slots on April 27 to express their thoughts regarding the proper focus of the CDC’s 5-year Strategic CFS Research Plan, which CDC plans to unveil at the CFSAC meeting in Washington at the end of May. The ME/CFS community clearly feels a “now or never” need to be heard on this issue – the big question being What lies ahead?

A Brief History

April 6, 2009: The Department of Health & Human Services announced a meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), to be held in Washington, DC, on May 27 & 28. Those who wish to address the Committee must pre-register by May 22.

April 15: CDC issues announcement of a formal “Stakeholders’ Meeting” to be held on April 27 in Atlanta, for discussion of issues that the CDC would consider in developing a 5-year strategic plan for ‘chronic fatigue syndrome’ research.

• Interested parties were invited to submit comments on issues that CDC would consider in developing the strategic plan (deadline April 22, later extended to May 1),

• Stakeholders were invited to register by April 22 for 5-minute comment periods at the April 27 Atlanta meeting.

• CDC stated that it would present a draft 5-Year Strategic CFS Research Plan at the May 27-28 CFSAC meeting in Washington.

April 21: IACFS/ME President Dr. Fred Friedberg issued a Draft Position Statement on the CDC’s 5-Year CFS Research Plan, articulating briefly some of the overarching concerns and issues that others, worldwide, were expressing in scores of places around the Net.

April 27: Many of the community’s stalwart advocates, and committed patients, made a point of attending and submitting oral comments at the Atlanta Stakeholders’ Meeting (in person or via live phone connections).

Transcripts of many presentations from the meeting – and comments on the situation – have been posted in many places, from ProHealth's ME/CFS Message Board to the CO-CURE Listserv. Now ME/CFS research reporter Cort Johnson has begun collecting them in one place – see The ME/CFS Community Responds, at Cort’s AboutMECFS.org website (scroll way down).

May 22: Deadline for pre-registering to address the upcoming CFS Advisory Committee Meeting.

May 27-28: The IACFS meeting in DC.

June 30: Deadline for submitting comments on the Draft Research Plan that will be unveiled in DC May 27-28. Comments may be e-mailed to CFSResearchplan@cdc.gov, and there will surely be a handy form for submitting comments at the CFIDS Association website.

* * * *

One Stakeholder’s Comment on the April 27 Meeting…

CDC Chronic Fatigue Syndrome Stakeholders Meeting in Atlanta Was One for the Ages – by Craig Maupin

Note: This opinion is reproduced from The CFS Report (www.cfidsreport.com) with permission of its editor, Craig Maupin, who states, “as always, feel free to copy and paste.”

For me, language often conveys more than meaning. French is a language that is musical, capable of remarkable complexity. Navajo is a language of mystery and a steadfast resolution. Italian is a language of passion and strength.

Another language was spoken on April 27th, 2009 at the Edward R. Roybal Campus in Atlanta, Georgia. Over the years of writing and maintaining The CFS Report, I have heard this language spoken many times. It is a language that often goes unheard and unnoticed. It is a language well-known to the chronic fatigue syndrome (CFS) community.

Last Monday, a meeting hall within the Centers for Disease Control resounded with personal stories of loss and suffering.

• An intelligent, professional woman told of how she lost her youth to a constant, grinding flu.

• A man, the primary caregiver for his wife, recounted how his wife went from active partner to bedridden.

• Another speaker, obviously fluent in the painful parlance, recounted how she lost her family and her friends, painfully noting that chronic fatigue syndrome was a different kind of “burden.”

• Yet another man, voice trembling, recalled losing his career and watching his family suffer.

I have heard these stories. For many of us, these stories are both familiar and personal.

Medical researchers also spoke, challenging the CFS research program’s narrow focus and investments.

Dr. Nancy Klimas urged the CDC to “open up to external investigators.” She urged them to consider “the role of other chronic persistent re-infection in this disease. The international feeling, but not necessarily the feeling here in Atlanta, is that it is a very important…. You just can’t say that you are not going to look at infectious disease. If there is this much immune activation, there is either a pathogen or an auto-immune disorder.”

Dr. Staci Stevens urged research reform: “Without defining subsets clearly, it will preclude you from meeting your goals. You won’t understand etiology, and you won’t understand clinical management.”

Dr. Lily Chu also spoke about clinical perspective: “Selecting study subjects by using study criteria that has been diluted, such that it no longer resembles the illness… will generate erroneous and confusing results. For example, the Bibb County registry, an excellent idea in concept, requires potential subjects to only have had one month of severe fatigue to qualify.”

The CDC CFS research team said they were listening, and they wanted to integrate the input into a fast-forming five year strategic plan.

Dr. Lonnie King, director of the National Center for Zoonotic, Vector-Borne, and Enteric Diseases, told the story of a CDC colleague whose story appeared in an internal ‘CDC Connects’ publication.

Dr. King said the CDC employee’s story injected a newfound personal incentive into the CFS program: “We need to focus on the prevention side. So that when a patient like our CDC colleague visits her doctor and says that 'I am exhausted', we want to make sure that she leaves with hope; with good information, and with hope for a productive future.”

Dr. William Reeves, who heads the program, emphasized that the CDC was moving toward prevention, faithfully following the recommendations of a CDC-appointed review committee: “The review committee felt that the accomplishments of the research program – over the last decade or so – have been substantial. They felt our current research projects address important issues. Their judgment was that the CDC team currently leads the world.”

Reeves continued: “We are the Centers for Disease Control and Prevention. We are not the NIH. We are not the FDA… Our goal is to conduct a public health research program that will lead to the control and prevention of CFS.”

The meeting attracted a “who’s who” of the CFS advocacy community:
• Marly Silverman,
• Hillary Johnson,
• Kim McCleary,
• Tom Kindlon,
• Dr. Mary Schweitzer,
• Cort Johnson, and
• Eileen Holderman; each spoke.

I recognized each name. I also recognized that – at least on this day – we spoke a common language, a common message. Despite Reeve’s “lead the world” rhetoric, he does not have the CFS community’s confidence.

Investments at Emory University’s psychiatry department and ABT Associates have been as restricted as the undersized review panel that met weeks earlier. Within a week, the panel quickly stamped out an evaluation that had every appearance of being written by Dr. Peter White, a controversial psychiatrist from the United Kingdom. White has had a penchant for portraying CFS as a predominantly women’s disorder of malingering beliefs and voluntary deconditioning.

The surprise of the afternoon came from a fiery Dr. Fred Volinsky. Volinsky, a former Harvard professor, has worked with an award-winning team comprised of the discoverers of the AIDS virus, a Nobel Laureate, and winner of the Albert Lasker award.

Volinsky lashed out at the CDC CFS program for lacking a key requisite for scientific success: “I am very outraged for the lack of funding in this field….There isn’t enough being done by the NIH and the CDC, and one of the roadblocks is that you need objective people. To make progress, you can’t have people that don’t believe it is an organic disease.”

The afternoon was filled with the sounds of a language that people with CFS know well, a worn-out refrain that plays on, often in the shadows.

Notes of common understanding filled the air. The CFS community, researchers, and clinicians spoke with resonance, lasting clarity. Change is needed, but it must be the right change.

After the meeting, Hillary Johnson wrote that those who spoke “are looking for rational, competent, scientific research. And if the agency didn't hear that this afternoon, it never will.” She is right. Languages are for more than speaking; they are for listening. But only if one takes the time – with an open and willing heart – to hear them.

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