'Bringing the Heat' - the new Phoenix Rising Blog

Chronic Fatigue Syndrome Advisory Committee Meeting of May 07, 2007: An Overview by Cort Johnson


The Chronic Fatigue Syndrome Advisory Committee is composed of prominent CFS physicians, researchers and advocates. the CFSAC advises the Secretary of Health on three aspects of CFS: education, patient care and research. In its two-day, twice yearly meetings it interacts with a wide variety of government officials including the CDC, NIH and the Social Security Administration. A major aspect of the CFSAC’s work is providing the Secretary of Health with specific recommendations on how to improve the DHHS’s CFS program. The DHHS allocates about $37,000 for the CFSAC program.

At the May 20O7 CFSAC Meeting We Found Out About:
  • About a Dynamic ‘New’ Successful CFS/ME Organization that could prove a model for others,
  • Whether the Roadmap Initiative might save the CFS Research Program at the NIH
  • What Dr. Reeves thinks CFS is.                                                                       
  • How the reorganization process at the CDC is affecting the CFS research program there
  • About the Centers Of Excellence proposal from the CFSAC and more!

The CFSAC consists of;

Rebecca Artman – a ME/CFS advocate associated with PANDORA in Florida;
Lucinda Bateman, MD – a ME/CFS physician, researcher and advocate based in Salt Lake City.
Ronald Glaser, Ph.D. – a ME/CFS researcher focused on Epstein Barr Virus
Arthur J. Hartz, MD, Ph.D - a physician and biostatistian with an interest in ME/CFS
Kristine Healy, MPH, PA-C – a ?
Leonard Jason , P.hD – a ME/CFS epidemiologist, IACFS/ME board member and advocate based in Chicago
Nancy Klimas, MD –a ME/CFS researcher, physician, advocate, head of the IACFS/ME, based in Miami
Jason Newfield, Esq. – a disability attorney with an interest in CFS
Morris Papernik, MD. – a ME/CFS physician, researcher and advocate based in Chicago
Christopher Snell, Ph.D. – researcher, Director of the Pacific Fatigue Institute in the San Francisco Bay area.

MUCH TO OFFER: AN EXCITING‘NEW’ CFS/ME/FM ORGANIZATION

OFFER, the Organization for Fatigue and FIbromyalgia Education and Research, based in Salt Lake City, Utah, is a bright spot in the ME/CFS universe. A support and advocacy organization formed in 2002 by Dr. Bateman, OFFER demonstrates the difference that can be made when committed professionals such as Dr. Bateman team up with patients/advocates and others and launch a broad-based effort on the issues facing ME/CFS.

Linda Milne gave the CFSAC an overview of OFFER’s activities. In the last five years OFFER has:

  • Attracted a high quality board of directors including Dr. Bateman, a clinical psychologist, a FM physician, school district executives, a bank executive, a disability attorney and others.
  • Produced and recorded 60 monthly meetings with experts focusing on coping and therapy
  • Produced an on-line newsletter sent to several thousand people

  • Presented four annual provider/patient conferences on CFS research and treatment

  • Had Dr. Reeves of the CDC do a ‘grand rounds’ presentation at the University of Utah, speaking to 150 physicians
  • Had the distinguished Senator from Utah, Orrin Hatch, close the provider conference and open the patient conference.

OFFER is also one of only three clinics in the US allowed to provide Ampligen treatment for CFS patients and it is involved in drug trials for several prospective FM drugs. It has apparently gotten the University of Utah involved in ‘groundbreaking research’.

Linda Milne provided a story of one physician who asked for his daughter’s forgiveness after attending an OFFER conference. He then went to work on her husband – another unbelieving physician!

OFFER has been able to do one thing that others have found difficult – interest health providers in CFS/ME. Dr. Klimas was clearly interested in this noting that she perceived an ‘intense interest’ in learning how to treat CFS from the medical providers at the conference she attended. She felt that OFFER has a ‘very packagable agenda’ that ‘absolutely has to be done’.

In short, in a short period of time Dr. Bateman has built OFFER into a dynamic organization with outreach into governmental circles, health care providers, university research and, of course, the CFS/ME patients across the region. Linda Milne believes this model of patient education, advocacy and research can and should be duplicated in other states and will take this idea to the Board in the future. Dr. Jason stated that 20 OFFERs across the US could make a HUGE difference.

Dr. Snell pointed out that OFFER’s extensive database gives researchers access to another important resource - patients. The problem of finding CFS patients for studies is a real one and one that impedes CFS researchers’ efforts. Dr. Snell, based in the San Francisco Bay area, one of the densest metropolitan areas of the US, has had to travel to Utah to access OFFER’s database to get patients for some of his studies! This is yet another reason it’s important to have strong local and state organizations that have ties to local physicians and researchers.

The east coast of the US has been a hub of CFS activity with the active New Jersey, Vermont, Virginia and Florida programs but activity in the Intermountain West has heated up with the creation of the Nevada CFS Research Center (Whittemore Neuroimmune Institute), OFFER and what appears to be a strong Colorado program. It’s encouraging that three of these programs (Vermont, PANDORA in Florida, OFFER) were created relatively recently. (But where are the biggies, California and New York?) Please send Phoenix Rising news of your state program.

AN INTEGRATED APPROACH TO CHRONIC ILLNESS – DR. PATRICIA FENNELL of Albany Health Management.

Dr. Fennell, a prominent figure in CFS for many years, runs Albany Health Management Associates, co-authored The Handbook of Chronic Fatigue Syndrome and is the author of The Chronic Illness Workbook. She originated the Fennell Four Phase approach to chronic illness.

One interesting area Dr. Fennell spoke on concerned trauma and CFS. One of the CDC’s more controversial findings was very high rate of ‘child abuse’ (physical, emotional, etc.) in CFS patients. Dr. Fennell said that for many years the prevailing view was that CFS patients were, indeed, abuse victims but that has changed. In her experience the rates of abuse in CFS are no different than in cancer or AIDS patients. The ‘trauma’ experienced in CFS is generally not connected with some dark event in the past but with difficulties of dealing with a disabling and controversial disease. There are four main kinds of trauma found in CFS”

*Disease trauma – from having a chronic disease
*Iatrogenic trauma – from negative experiences with the health care system that often lead patients to start avoiding it altogether
*Cultural trauma – prevailing attitudes towards CFS plus the loss of jobs, home and friends
*Pre or co-morbid trauma – other ongoing traumatic events in their lives not connected with CFS.

There was much more to Dr. Fennell’s presentation but it was quite complex and will not be addressed here. A full report on Dr. Fennell’s book and her approach will come later.

CFS/ME Treatment by Dr. Joseph Johns of the Veterans Administration Medical Center, Charleston, SC

With regard to therapies he noted that acupuncture, psychotherapy, herbs, supplements, Ampligen, anti-dementia drugs and those used for bipolar and other chronic brain diseases may all be helpful in CFS. A new herpes virus ‘stabilizer’ drug called cyclovere is generating some excitement. He believes in a holistic approach to CFS including cognitive behavior therapy and exercise therapy (if enough rest is provided).

With regards to causality he is focused on a channelopathy and defective anti-viral machinery. He believes multiple viruses are involved in CFS and that there is some genetic predisposition to the disease and that environmental factors (e.g. infections) perpetuate CFS/ME.

Will the ROADMAP INITIATIVE Save the CFS Research Program at the NIH?

Background: the Roadmap Initiative grew out of a recognition that many diseases cross institutional boundaries and defy easy categorization. Some CFS patients will know that CFS’s inability to fit comfortably within say the immune (NIAID), neurological (NINDS) or cardiovascular institute (NHLBI) has left it ensconced in a small office at the NIH, the Office of Research Into Women’s Health. The ORWH’s attempts to foster an NIH wide (‘trans-NIH’) CFS research program involving the Institutes has largely failed and CFS research funding has plummeted since the ORWH took over the program in 2002.

Now we have a very large initiative that on the surface looks like it’s designed to focus on the kind of multi-systemic processes present in CFS that the Institutes have had such trouble tackling. The Roadmap Initiative has, therefore, fostered a great deal of hope that it may bring a new day for CFS at the NIH. The CAA’s 2007 Lobby Day was focused on getting the Secretary of Health to give CFS more consideration as the Roadmap Initiative is rolled out.

A SURPRISING GUEST. Given this, it was encouraging if not shocking to have none other than the Director of the Roadmap Initiative himself, Dr. Alan Krensky, show up at the CFSAC meeting. Dr. Krensky had been designated Director of the Roadmap Initiative ($480 million dollar budget) not long before and yet here he was, a very busy man with a very big task ahead of him, showing up at an advisory committee on a disease the NIH has shown almost no interest in dealing with in a significant manner. This attention in itself seemed like considerable progress.

Despite its small budget CFS does have several things might make it of interest to a Roadmap Director; it’s the only program that already has a trans-NIH structure and it’s a poster child for multi-systemic disorders. The inability of the ORWH to put together a strong trans-NIH (CFS) research program might very well have some lessons for someone trying to do the same thing on a much broader scale. It was perhaps no coincidence that we were lobbying Congress about Roadmap earlier that very week. Whatever the reason for Dr. Krensky’s appearance it was a welcome one to a committee that that has had trouble getting its recommendations responded to, let alone acted on.

The Roadmap Initiative’s Mission, Dr. Krenek informed the committee, is to:

(a) provide the Institutes and Centers (and Offices) of the NIH the tools they need to effectively attack the complex multidisciplinary challenges they face.
(b) Identify important scientific opportunities and areas of public health where needs are not being met.

It’s hard to imagine that CFS wouldn’t interest the Roadmap planners given its multidisciplinary focus and its many unmet public health needs. Similar research findings in CFS and other fatiguing diseases also suggests it presents a scientific opportunity that could extend well beyond the 4,000,000 US adults believed to have CFS.

Thankfully Dr. Krenski didn’t sugar-coat his words: there is both good and bad for CFS under the new initiative. In particular, CFS advocates’ greatest hope, that the Roadmap will allow CFS to finally find a home within the NIH, is not going to happen. Dr. Krenski said

“Many advocates believe their illness is not represented at the NIH and are hoping that OPASI is a place for such representation. This is not the way the process works”

We’re apparently not going to see study section called “CFS – severely understudied multi-systemic disorder with high public needs” in the Roadmap Initiative. Instead it looks like CFS researchers are going to have to define their projects in terms of Roadmap objectives and then try to shoehorn CFS patients into them. Inflammation, for instance, will probably be a big topic. In order to get funded CFS researchers will probably have to address central questions regarding inflammation and then use CFS patients to study it. Still, Dr. Krenek believes that “CFS is one of the diseases for which Roadmap topics could have huge implications”.

In order to take advantage of the Roadmap’s opportunities, however, CFS researchers are going to have to know how to finesse a system that has largely rejected their efforts thus far. The principal mode of funding in the Roadmap will involve the same external grant process that has so stymied CFS research efforts at the ORWH over the past five years. There also seems to be little in the Roadmap that will keep the big diseases with their entrenched following and vast experience from monopolizing the Roadmap process. CFS will still be a very little fish in a very large pond.

The Roadmap also doesn’t appear to do anything to address another huge problem in CFS: the need to attract researchers to the field. Researchers need to know that the NIH is serious about CFS before they take a chance on such a difficult and controversial disease. Nothing the NIH has done in the last five years suggests that it is. Dedicated funding for a research center would but it is hard, at least in the early stages, to see how the Roadmap will provide anything like that.

The Roadmap’s objectives – looking at multi-systemic processes, on the other hand, may very well lead to findings that could apply to CFS. Another encouraging note was Dr. Krensky’s recognition that the current grant review process encourages reviewers to make safe choices. The Roadmap’s review boards will be on the lookout for ‘out of the box’ ideas. Innovation will be stressed. The CFS grant review boards have been a matter of contention for several years.

Unless researchers have some certainty that the NIH is committed to attacking CFS in a meaningful way it will always be underfunded. The Roadmap does nothing in a concrete way to create the kind of infrastructure (e.g. an ongoing research center) needed to attract researchers to this field.

Dr. Krenek’s report made it hard to understand how Dr. Hanna’s attempt to fund a Center of Excellence under the Roadmap Initiative will bear fruit. In November 2006 she reported she would attempt to get the cooperation of the trans-NIH working group in January 2007 to put forward a proposal for Centers of Excellence under the Roadmap Initiative. Dr. Hanna is the leader of the CFS Research program at the NIH.

Phoenix Rising will keep you informed of how CFS fares in the Roadmap Initiative.

The Centers For Disease Control : Dr. Reeves

Dr. Reeves is typically a quite active participant in these meetings. This meeting was no exception; he gave a long presentation on the status of the CDC’s CFS program.

The CDC’s Concept of CFS – The CDC treats CFS as a complex disorder of disturbed homeostasis that like all complex diseases reflects one’s genetics, epigenetics and experiences and the way one’s body has reacted to what one has experienced.

What is CFS not? Dr Reeves believes CFS is not a ‘disease’ but the kind of complex ‘illness from which various diseases spring’.

What in the world does this mean? It could imply that CFS is characterized by problems in very basic aspects of functioning that eventually lead to other diseases (???) A quite large percentage of the Wichita study participants did, after all, have other health problems but Dr. Reeves rather cryptic statement will unfortunately have to go mostly undeciphered.

(Dr. John, an earlier speaker, was not hung up on the need for CFS to be a ‘disease’. He stated that when faced with colleagues who say “this is not a disease” his response is “Do you believe in congestive heart failure” which is simply a gross syndrome of cardiac dysfunction.)

Dr. Reeves also believes that understanding CFS may help us understand other complex illnesses such as post-Hurricane Katrina health issues or post-vaccination problems.

Dr. Reeves has stated before that he believes Katrina will lead to a great increase of CFS in New Orleans residents and there’s ample reason to believe that it may. Besides the psychological stress these people were under they were also exposed to horrific conditions; extreme heat, little food, contaminated water, high levels of mold, etc., any of which might have triggered CFS in susceptible individuals. No studies have examined, however, whether major traumatic events lead to an increase in CFS prevalence.

Dr. Reeves has never, to my knowledge, spoken of CFS in terms of post-vaccination illness. It’s not a big jump from a bizarre reaction to an infection to a bizarre reaction to something that mimics an infection such as a vaccination. Still, the role vaccinations play in causing CFS and other illnesses are not uncontroversial and it was interesting to see Dr. Reeves refer to them.

Dr. Reeves also stated that ‘we know very clearly now that CFS is a mind/body type illness and involves the HPA axis and that it can include in varying degrees sympathetic nervous system involvement, change in the HPA axis, a metabolic component, etc.”

When asked about CFS being characterized as a somatoform disorder or a merely psychological disease, Dr. Reeves replied that “CFS is a mind/body illness. You can’t separate them. How can I deal with perceptions? I do not have a diagnostic marker but I can show you changes in cognitive functions that go to the frontal cortex and basal ganglia.It needs to accumulate in the literature [before your concerns can be addressed].”

Research. Dr. Reeves reported that In its first foray into brain imaging studies the CDC found abnormalities in the cerebral frontal cortex and basal ganglia during cognitive function. Brain imaging studies have had almost uniformly positive results over the past few years and they appear to provide a good window into what’s happening in CFS. It’s good to see the CDC moving into this area and good to see them getting positive results. They’ve also found a blunted diurnal cortisol response. They’re continuing to measure genetic and other laboratory measures in their patients.

Collaboration with Emory University. They’re going to bring 60 patients to Emory University for 3 days to do more fMRI scans and HPA axis tests. Emory University appears to be very interested in CFS; they would like to undergo treatment trials (no treatment mentioned) and set up a CFS Center of Excellence there.

Getting a major university interested in CFS is a big step forward. Major universities have clout and credibility and they’re very adept at the grant process. The Emory University researchers associated with Dr. Reeves have been chiefly engaged in neuro-immune research.

A Continuing Focus on Child Abuse. The Heim CDC study using the new Empirical Definition that found significantly increased rates of child abuse apparently made a big splash at the CDC. Dr. Reeves stated they found that early childhood abuse is a ‘big risk factor’ for CFS.

Does Dr. Reeves’ mention of this simply reflect the fact that this is one of the few studies to use a definition (the new Empirical Definition) that he trusts or does it reflect more of an emphasis on emotions in CFS? The Empirical Definition’s expansion of the role emotional issues can play in defining a CFS patient suggests the latter. Phoenix Rising will keep you informed of the trends in the CDC’s CFS research as it continues to unfold.

Economics. They are undergoing a new evaluation of the economics of CFS and they are examining health care utilization by CFS patients.

Physician Education. They have money for another year of education outreach to health care providers.

Population vs. Clinical Studies. They have done a random population survey. Now they’re identifying patients seen in various clinical settings (physicians, chiropracters, massage therapist, school nurses) and will compare them to the randomly surveyed groups.

One wonders if, among other things, they will compare rates of child abuse. Given the importance Dr. Reeves places on it one would think they would. Will this population – presumably better off financially – also display high rates of child abuse?

Changing the Name? An absolute non-starter with Dr. Reeves.

CDC Reorganization and CFS. The CDC is being reorganized and the CFS program has been booted out of its old home (The Division of Viral and Rickettsial Diseases). Where it will end up is unclear.

Last winter the CDC’s CFS research team gave two days of presentations to an internal planning group. That group basically appears to have concluded that the multi-disciplinary focus Dr. Reeves has brought to the team is a good one and that the team was doing good work that could be built on and that the program should be continued.

The CDC then convened an ‘external blue ribbon panel’ to review the entire program including possible intra-agency and external collaborations and their research options and to identify appropriate areas of future research. This report had similar results; the research program should basically continue as it is.

A worrisome note was sounded, though, when they suggested that the ‘the organizational strength of the CFS research program’ should be preserved. Apparently one of the options is breaking up the research program and spreading it across the CDC – almost certainly the kiss of death for a viable CFS research program. One thing we have learned is that most researchers will only touch CFS with a ten foot pole. It’s hard to imagine different department areas in the CDC taking on CFS with any vigor. We’ve seen that moving the CFS research program in the NIH away from the ‘protection’ of a central institute (NIAID) to a small office with a trans-NIH program has lead to its virtual dismantlement. Dr. Reeves’ ideas may be disconcerting at times but he is a vigorous and committed researcher.

The Future of the CDC CFS Research Program – Whether Dr. Reeves will be able to get much work done is another matter. The CFS program’s 2007 budget is $4.3 million dollars - about what they spent in 1992 (not accounting for inflation). They were recently spending much more but the payback funds are gone and even their normal budget has dropped by about 30% since 2002.

Dr. Reeves stated that if the budget stays as it is they have several years of analysis they can do on their data (they have an enormous amount of data) but they will not be able to do any more population studies. Once that stops it’s difficult to start it up again.

CDC/CAA Education Campaign – The education campaign, which is directed by the CAA in conjunction with Fleishman-Hilliard, a public relations firm, is funded through 2009. All sorts of statistics have been generated (59 million viewer impressions) but what stood out for me were the increase in hits on the CDC CFS website; from 11,600 downloads prior to the kickoff of the media campaign to 410,000 following the presence conference. More than 1500 CFS stories appeared in the print and broadcast media in the first six months following the launch. The Education Campaign has made a splash.

On a more humorous note, a committee member asked about getting us on Oprah. Oprah did do a piece on CFS. That’s the sort of thing that apparently makes an impression on an advocates mind as Kim McCleary knew the exact date -June 24th, 1998. (We did recently get a story on CFS in Oprah’s magazine).

To Day Two of the May 2007 CFSAC Meeting