History – REEVES CFSAC presentation 2009

Dr. William Reeves’ final presentation to the CFSAC was on May 27, 2009.  I remember watching it on live feed, and taking copious notes.  I found the notes just the other day when I was going through an old hard drive, and thought we could see how far we have come.  Or not.

Dr. Reeves’ presentation lasted approximately 40 minutes.   He prefaced it with an outline of what he would be discussing:

  • He would update us on  results of peer review
  • He would discuss the draft of the 5 year strategic plan, calling it a “complex topic”.
  • He  would explain the current CFS program, discuss the logic model that’s in the handout, go through the current version of the draft,  putting it into context with the peer review and stakeholders meeting, and the recommendations that this committee has made.

Dr. Reeves said the the “program objective is to devise control and prevention strategies, and improve the quality of life of sufferers.
We are not NIH, we are a complementary agency.”

He went on to say that the control strategy model is rather simple – that there is the population of the world, and in that population some have CFS.   Among those who have CFS, there is more than one subtype.

“We need to get these people to interventions. Their illnesses
need to be evaluated and managed. We must take subtypes into account. We must decrease the burden CFS poses on the
population, decrease impairment, and decrease economic impact.”

He said that the CDC needs to address the barriers to access to healthcare. But on the other hand, patients actually have to utilize that healthcare.

Thirdly, patients have to receive appropriate care.

“What do we think CFS is?” Dr. Reeves asked. “It’s a complex illness, with alterations in complex homeostatic systems.  It’s not the result of a single mutation or a single environmental factor. It comes from a combination of many factors: genetics, gender, stressors, immune stressors all interact.”

Reeves showed a slide with a diagram. He said, “This is our current model. You see the brain in the middle. Around the brain,
stress is involved, traumatic childhood stressors, allostatic load maladaptation to stressors, genes interact with one’s reaction to stress, autonomic nervous system, orthostatic intolerance, immune activation..”

He went on to say that all of these things go in both directions (meaning that these things contribute to causing CFS, but CFS
contributes to all of these things.) He then mentioned that acute and latent infections that may reactivate with various stressors, and
that diet and lifestyle are important, again in both directions.

(Of note is that the very first things he mentions in his model are childhood trauma and allostatic stress loads.  In other words, we do not know how to handle stress. The third thing he mentions is genetics, but he ties genetics to stress – not to susceptibility to a

Dr. Reeves moved on to discuss the CDC’s CFS research strategy.
He said that population studies “let us look at risk factors, the clinical course of illness, to be able to tease out subtypes. We measure
biomarkers in our population studies, as well as knowledge, attitudes, and beliefs.”

He said that the goals are the same in clinical studies. As far as laboratory studies go, he said that “nothing we do doesn’t have a lab

Dr. Reeves said that the goal of education activities is that “we have to change attitudes, knowledge, beliefs, and treatment patterns.”

Next, Dr. Reeves wanted to discuss the Logic Model that his team has developed. He said that the reason for a logic model is that it
‘allows you to put strategy and tactics into perspective, outline goal and measure success.”

In the logic model, there are inputs, outputs, and outcomes. He discussed them as follows:

Outcomes: “We want to reduce population morbidity and improve quality of life for patients.”

Inputs: “These are activities, what we actually do. It is not a trivial illness. Congress realizes and appropriates money to study it.
Advocates, academia and pharma, these are people we can partner with to do it.”

Outputs: “Knowing the burden of the disease, knowing the “knowledge attitudes and beliefs” of sick people, their families, physicians,  etc., education, the cfs website…”

“The only outputs we really haven’t gotten to yet is therapeutic targets.”

Dr. Reeves went on to discuss CFS publications. He said that there are 136 peer review publications, 4 manuscripts in press, 10
manuscripts in review. “This is how science is done“, says he. “Who reads them and who have they influenced?” he asked.

He said that there are about 3000 or so publications on Pubmed on CFS.   About 1600 in other journals reviewed by ISI. He noted that the “only group that has more in the world is the United Kingdom.”

Dr. Reeves then moved on to the Case Definition.
He said that the newly defined illness was first defined in 1988 (Holmes).  It was then redefined in 1994, and this definition is currently the international standard. (Fukuda).

He said this is the reference standard, but has it problems. Because of that, he said, an international group worked toward
streamlining this in 2000, and it took 3 years to streamline the 1994 definition into an operational guideline. (This is how we got what is
being referred to as the “Reeves empirical”, which basically eliminates all of the very sickest of us, and the original Incline Village
cohort….and yet includes people with mood disorders only.)

Reeves said that the revision recommends standardized instrumentation to measure frequency, occurrence, and duration of symptoms.

(Doctors are having a hard time actually obtaining these instruments, or at least, Dr. Bell is, as he complained to the CDC).

Dr. Reeves then stated that provider knowledge, attitude, and belief is higher than 10 years ago.

Dr. Reeves moved on briefly to the peer review executive summary. He said that the CDC is using their comments to frame the
program, but that the bottom line was that the peers liked the current program and had endorsed the 5 year strategy.
He did make a comment on the criticism of the 2005 publication of operationalizing the 1994 Fukuda definition of CFS. His comment
was that the CDC leads the world in defining this illness, and that it was not an attempt to rewrite the 1994 Fukuda, just an attempt to
operationalize it.

Clinical guidelines was the next topic.
Dr. Reeves said that the biggest flaw in studies is that in cross-sectional studies, patients have only been sick 5 years. He said that the CDC was developing collaboration with the Mayo Clinic to use Rochester epidemiology, because local people use the Mayo Clinic from birth to death. That would give complete birth to death medical records on CFS patients, so that researchers could look back to see
what happened to some of these people as kids, what kind of traumas they may have had, and what happens to the clinical course
when they get it and go on. (Again the emphasis on the inability to process trauma).

Dr. Reeves then brought up the April stakeholder meeting – he said that “I’m not trying to be funny, but the response was very
impressive, given problems with travel/economy/illness.”
He noted that 8 people testified in person, and 30-something testified by phone. He said that leading up to that meeting and
subsequently, up until the present day, he had received around 350 or so emailed or written comments, many from some of the same
people who testified. He said that this does make it move difficult to say that 90 percent of stakeholders feel this way or that way,
because it’s all one person, basically.

He said that some of the issues that the stakeholders brought up were that:

  • Communications with the CDC had not been optimal.
  • The case definition was a high concern.
  • Pathology, biomarkers and sub typing, infectious agents, needed to be researched.
  • Management and treatment of the disease needed to be addressed.
  • Collaboration and data sharing needed vast improvement.

Reeves noted that these were the same types of comments that have been raised by the CFSAC, physicians, etc., so fair representation of concerns were addressed.

Next,  Dr. Reeves moved on to the topic of “moderators”, or things outside of what one can control, whether they be good or bad. First he mentioned some “good moderators”:

  • He said that funding had been quite available to the CFS research program.
  • He said that credibility is increasing, making research easier.
  • He said that from 1992 to 1999, funding was only 3 to 4 million per year, so they only focused on a few things, but that from 2000 to 2005, due to payback funding, “we were able to do the Wichita study, collaborate with the CFIDS Association of America, do a pilot national survey, funded one of the best post-infectious disease studies, and cytokine studies”.

Dr. Reeves said that now that payback is over, funding is decreased again.

The CDC has been doing a cross sectional study in Georgia, and have been following the CFS population there. There were a series
of workshops, he said, from 2000 to 2002, studies that show that the CFS construct is real, internationally. Across the board, he said,
in every country, the CFS construct is “Fatigue plus 8 magic symptoms, so the empiric underpinning is good”.

Then Reeves talked about “hindering moderators” or, as he put it, “what can one do with what one has. Economics is a problem for
everyone”.  He said that from 2000 to 2005, during payback, the budget averaged at about 7 million a year, but now we are back to
abut 3 to 4 million a year. He said that this represents a real 50 percent decrease, but then you have to factor in inflation.

Also, he noted, “we need to get more involved in more collaborations, working with others. Not just giving them money. We need to work together toward common goals with pharma, academia…”

Dr. Reeves then discussed the CDC’s Vision:
He said that he believed that the CDC had successfully focused on obtaining baseline information. So in moving forward, the strategy is
to focus on 4 goals:
(This is the 5 year plan)

1. Refine understanding of etiologic pathways to improve diagnosis and identify therapeutic targets. Reeves said that “Psychosocial,
clinical and biological markers must be identified.”  He also noted that we must identify risk factors, and used major depression disorder as “an extremely good example of this,another complex illness with subsets.”

2. Improve clinical management of CFS patients by providing evidence-based education materials that address evaluation and clinical management of CFS.

3. Clinical intervention trials.

4. Move CFS into the mainstream of public health concerns.

Finally, Dr. Reeves discussed upcoming activities, including an international workshop on clinical management. He noted that the “UK already has this integrated into their healthcare system”.

Reeves then mentioned that there is a CBT/GET trial in the process of being planned in Macon with the collaboration of the “UK group
and the Mayo Clinic”.


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