PHOENIX RISING

A Guide To Chronic Fatigue Syndrome (ME/CFS)

RESEARCH

THE 2006 PHOENIX RISING

 RESEARCH GROUP OF THE YEAR

Dr. Reeves and the Centers For Disease Control Team

W. Reeves, S. Vernon, J. Jones, E. Maloney, E. Unger, T. Whistler, B. Gurbaxani, E. Aslakson, R. Boneva, D. Hoaglin, R. Devlin et. al.

"The  CDC under your leadership has pulled a lot of investigators from around the world together, involved investigators who have never been interested in the past…..You have over the last three to four years amassed by far the largest and most important body of knowledge about this illness that anyone or any group has yet done. It has changed the field…..I extend my personal thanks for an enormous and successful effort"

Dr. Komaroff speaking to Dr. Reeves at the July, 2006 ME/CFSAC Meeting

Yes, the CDC. I can hear teeth gnashing from here. Not the CDC! Has he lost his mind! The group everyone loves to hate? There’s been more bad blood between the CDC and ME/CFS patients than any other institution - by far. Mention the CDC to the typical ME/CFS patient and they’ll tell you they have been trying to marginalize ME/CFS since the day they showed up at Incline Village. They blew it there, then helped come up with a couple of bad definitions. In the late 1990’s they took ME/CFS funds and used them for other purposes and then lied about it to Congress! Then just last November the head of the CDC had the audacity to get up before the world in Nov and say that finally, after all these years WE have proof that ME/CFS is a real disease – that knocked many ME/CFS patients into a tizzy. It doesn’t help that the research program is lead by someone who seems to have the uncanny ability to tweak the psyche of the, shall we say, a rather sensitive ME/CFS patient population.

When it came down to it, though, it was the CDC in a landslide - no other group came close. They directly  produced four of the top ten papers, and were indirectly responsible for two more.  Plus they funded three studies done by the second place group including the Paper of the Year.

A Daring Approach. Unlike the NIH which is ever so timid in its approach to ME/CFS, the CDC has not been playing it safe and last year they threw the whole ball of wax at the disease. Before they were done the small ME/CFS research team and a team of unpaid ME/CFS researchers had pioneered techniques the CDC as an institution has never used before. They generated enormous amounts of clinical, laboratory, gene expression and gene polymorphism data, then threw it against the wall and used researchers skilled in data mining and other complex statistical techniques to try and make it stick.  Then they gave it over to another group (CAMDA) and let them take their shot at it. The possibility of a spectacular failure must have hovered over their heads.

Not all of it did stick but enough deal did and their gamble resulted in the simultaneous publication of fourteen papers in the Pharmacogenomic’s Journal – an unprecedented achievement in ME/CFS research.

The CDC also funded the second most innovative (and perhaps most important) research studies of last year: the Dubbo projects headed by Andrew Lloyd. This project, which is following people as they come down with ME/CFS after getting an infection, is virtually the only study trying to catch ME/CFS in the act. It has the potential of showing us how – step by step – how ME/CFS occurs.

Public service to ME/CFS also plays a role in determining who gets the research(er)/research team of the year award and the CDC also showed up in spades here. Not only did they pick ME/CFS to kick off their first ever media campaign but the director of the CDC, Julie Gerberding, stood up at the podium and told the entire world that ME/CFS was a real and serious disease - an invaluable announcement from such an important official.
Plus the CDC website has been extensively updated and contains a ME/CFS toolkit physicians can to use to learn about ME/CFS. Thus far the CDC has trained about 3000 physicians in its physician training program on ME/CFS.

More Work to be Done.Certainly there's much more work to be done. The website is not all ME/CFS patients want – Mary Schweitzer has aptly pointed out that its coverage of ME/CFS research is abysmal and its treatment section is paltry. Similarly the physician training program is far too small to make a significant difference in the treatment of this disease but the CDC is trying - and they are the only ones who are.

The Pharmacogenomic’s studies weren’t perfect; the sample sizes could have been larger and one can argue about the variables they chose to focus on. In 2007 the CDC's prevalence study will highlight its controversial Empirical Definition (published in 2005) - a source of real contention.

Still the Pharmacogenomics studies and their allied efforts represent the largest effort by a federal institution (or any other group) to understand ME/CFS. They demonstrate how important it is that these institutions be involved in ME/CFS - no private funders can even begin to fund studies as complex as the Pharmacogenomic’s studies.

A Remarkable Turnaround. All told this is a startling turnaround for a program that not so long ago was called to the mat by the GAO for lying about its misuse of funds allocated for ME/CFS research. This is not the same agency ME/CFS advocates and patients have been beating up on for so many years.

An Emerging Conception of ME/CFS

Let’s end with Dr. Reeves and other prominent ME/CFS researchers/physicians description of what they believe is occurring in ME/CFS. It appears that a general consensus is emerging that a central nervous dysfunction possibly originating at the hypothalamus or basal ganglia leads to immune, cardiovascular, sympathetic nervous system, etc. problems in ME/CFS. This results in problems with homeostasis; i.e. with keeping the bodies systems in  balance. It's intriguing that even researchers with very different approaches (e.g. Dr. Reeves/Dr. Hyde) have, at least in some ways, a similar conception of this disease.

"One common theme…is abnormalities in various stressors, or allostatic load....All stressors affect the hypothalamus and activate the corticotropin-releasing hormone, which then affects the pituitary gland, adrenal glands, immune system, neuroendocrine system, sympathetic nervous system and muscoskeletal system. That is the model we are currently working on” Dr. Reeves From the ME/CFSAC Meeting, April 2006.

 "In CFS/FMS.... it is as if a major circuit breaker, in this situation the master gland in the brain called the hypothalamus, has gone off-line and is not able to reset itself....Hypothalamic dysfunction can cause a cascade of problems (that include)...disordered sleep, hormonal dysfunction, autonomic nervous system dysfunction. low body temperature..." Dr. Teitelbaum "From Fatigued to Fantastic, 3rd ed."

 "Individuals with these syndromes have measureable hypothalamic, pituitary,  immune and coagulation dysfunction. These abnormalities then result in a cascade of further abnormalities in which stress plays a role." Dr. Holtorf,  Immune Support Interview.

"The symptoms of fatigue, poor sleep, mental confusion, etc...are all warning signs that certain stress-coping chemicals have become deficient. These deficiencies then complicate one another until the body's homeostatic mechanism and HPA-axis become dysfunctional". Dr. Roger Murphee "Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome, 3rd. ed."

The “abnormalities in the M.E. patient, are caused by variable changes in the peripheral and CNS vascular system.” It's “health (is) in ….in direct relationship.... to the difficulty of the peripheral vascular system and organs to respond to CNS neuro-endocrine and other chemical and neurological stimuli in a predictable homeostatic fashion.”  Excerpted from the Nightingale Definition of ME by Dr. Byron Hyde.

Go To The Phoenix Rising Research Paper of the Year and the Top Ten Papers.