ME/CFS Society of WA: Reno Wrap-Up: A Report on the 2009 IACFS/ME Conference
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02 April 2009


By Kim McCleary and Suzanne Vernon, PhD



The CFIDS Association of America



In mid-March, researchers, clinicians, patients,

caregivers and advocates from around the world

gathered in Reno, Nevada, to share information,

critique the latest research and network in the

hallways and over meals. The 9th research and

clinical conference sponsored by the International

Association for CFS/ME (IACFS/ME) drew about 220

participants for the four-day event held at the

Peppermill Resort & Casino.



Marking the 25th year since CFS was first brought to

national attention, pioneering clinician and

researcher Dr. Daniel Peterson had the honor to be

the local host as well as to open and close the

conference sessions. Dr. Peterson is well-known for

having been among the first, with his then-partner

Dr. Paul Cheney, to recognize CFS among a cluster

of ill patients in his internal medicine practice in

Incline Village, Nevada, just over Mount Rose from

Reno. Dr. Peterson has stuck with CFS and by his

patients with CFS, so it seemed a fitting tribute to

hold the meeting in his backyard. Philanthropists

Annette and Harvey Whittemore, whose adult

daughter Andrea has CFS, have founded a center for

research and clinical care, the Whittemore Peterson

Institute, that will open mid-2010 on the campus of

University of Nevada Reno. Several conference

attendees drove past the construction site at

McCarran & Virginia streets while they were in Reno.




Patient Conference


IACFS/ME conference organizers established the first

day as a patient-oriented conference designed to

provide an overview of current research and

management, with longer presentations delivered by

current and past members of the IACFS/ME Board of

Directors. Dr. Peterson delivered the opening talk,

followed by Dr. Anthony Komaroff of Harvard

Medical School. Both gave summaries of some of the

most promising and durable research findings about

abnormalities in many body systems of CFS patients.

Two presentations on coping were then given by Dr.

Fred Friedberg of Stony Brook University and Dr.

Leonard Jason of DePaul University. Both spoke to

the need for pacing and energy management to avoid

the "push-crash" cycle of overactivity followed by a

relapse that can be so destructive over time.



Dr. Hirohiko Kuratsune of Osaka City University in

Japan reviewed his group's experience with research

and treatment over the past 19 years since he saw

his first CFS patient in 1990. The Japanese group has

taken a holistic approach to therapy, incorporating

everything from medications to anti-fatigue foods to

laughter to healthy housing. Dr. Ken Friedman of

University of Medicine and Dentistry of New Jersey

(UMDNJ) highlighted central nervous system

abnormalities and problems with the body's

energy-producing cells in CFS. Dr. Gudrun Lange,

also of UMDNJ, gave a detailed tour of brain anatomy

and function and then provided several coping tips to

compensate for the attention and processing deficits

that can be so problematic for CFS patients.



Dr. Nancy Klimas, concluding a four-year term as

president of the IACFS/ME, provided an overview of

pharmacologic therapy for CFS, emphasizing that

people with CFS often cannot tolerate the usual

doses of medications used to treat sleep, pain and

depression, and that starting low and very gradually

increasing dose can be the key to deriving a benefit

from a particular drug. She also talked about the

importance of gentle exercise, made easier by doing

things like swimming, recumbent biking and pilates

in a horizontal position to get around the orthostatic

problems with upright posture that many patients

experience. A panel of all the day's speakers

concluded the formal program; they took questions

that people in the audience submitted on written

cards.


During the day, researchers and clinicians had the

opportunity to attend four three-hour workshops, two

of which were offered concurrently in the morning

followed by two other sessions in the afternoon.

CFIDS Association scientific director Suzanne

Vernon, PhD, led one of the workshops. Dr. Vernon's

session attracted approximately 40 people who spent

the afternoon in dialogue about research design and

how genomics can inform clinical practice of CFS.


That evening, an unreleased documentary,

"Invisible," produced by Rik Carlson and Michael

Thurston, was shown. Although it focuses on CFS

patients living in Vermont, its themes were

recognized by all present. A patient reception

sponsored by Sierra Internal Medicine enabled

participants to socialize and network. Annette

Whittemore recognized the local volunteers who

helped make the meeting a success.




Research and Clinical Conference

The sessions on Friday, Saturday and Sunday were

dedicated to short (11-minute) data presentations by

researchers on specific study results that bridged

somewhat overlapping topics of treatment,

epidemiology, immunology, assessment, pediatric

CFS, genomics, genetics, brain functioning and the

integrative approach being utilized by the Japanese

to study CFS. Dr. Komaroff closed Sunday's session

with a brilliant overview of the 115 presentations

delivered from the podium and via two poster

sessions displayed in the exhibit hall.



Taking a step back from the order of the

presentations, several themes emerge, although

there is overlap among them, too. We've organized

our summary this way to draw attention to some of

the most interesting studies reported at the

conference. You can also read the daily updates:

http://www.cfids.org/cfidslink/2009/040103.aspposted

from the conference for more information.



The brain: Two studies used different techniques

to document brain abnormalities in CFS patients. Dr.

Frank Duffy, a Harvard neurologist, studied a large

group of patients using spectral coherence EEG and

was able to discriminate, with nearly 90% accuracy,

patients with rigorously defined CFS from healthy

control subjects and from subjects with major

depression. He stopped short of calling this pattern

diagnostic, but stated that it did define CFS as an

organic brain-based condition. The study was large,

with a total of 632 subjects; however, the CFS

patients referred by community-based physicians did

not demonstrate the same frequency of EEG

patterns, suggesting that the label of CFS may be

misapplied in some settings. Leighton Barnden,

PhD, of the University of Adelaide in Australia,

analyzed brain magnetic resonance (MR) images from

25 CFS patients and 25 healthy control subjects.

Comparing volume differences in specific areas of the

brain, Dr. Barden reported that changes in CFS

subjects were consistent with the symptoms and

symptom severity they reported. For example,

changes in the medulla and insula are consistent

with the autonomic dysfunction reported in CFS. He

was unable to determine based on this study alone

whether the changes represent the cause of the

symptoms or the effect of CFS.



Triggering agents/factors for CFS: While early

studies of CFS sought to identify a single agent that

caused the illness, most researchers now appear to

agree that CFS can be "triggered" by a number of

different insults including microorganisms (bacteria,

viruses, etc.), environmental exposures and severe

injuries (such as closed head trauma). At this

conference, researchers reported data on a number of

agents that set off a CFS-like illness. Here is a list of

the agents explored by researchers who gave

presentations:



     * Giardia lambia (Eva Stormorken, RN,

        University of Oslo, Norway)

     * Coxiella burnetii (Andrew Lloyd, MD, University

        of New South Wales, Australia)

     * Parvovirus B19 (Jonathan Kerr, MD, PhD, St.

        George's University of London, England)

     * Parvovirus B19 and herpesviruses (Kenny

         DeMeirleir, MD, PhD, University of Brussels,

        Belgium)

     * Mammalian viruses (Judy Mikovits, PhD,

        Whittemore Peterson Institute, USA)

     * HHV-6 and -7 (Modra Murovska, MD, PHD,

        Riga Stradins University, Latvia)

     * Epstein-Barr virus (EBV), CMV and HHV-6

        (Barbara Cameron, PhD, University of New

        South Wales, Australia)

     * Enteroviruses, EBV, Chlamydia pneumoniae,

        coxiella burnetii and parvovirus B19 (Lihan

         Zhang, St. George's University of London,

        England)



The main debate about these various triggers

seemed to be whether different subgroups of illness

were defined by the specific trigger (B19 vs. EBV), or

whether the resulting illness was the same

regardless of the triggering event/agent. More

research will be required to sort this out. It is worth

noting that none of the agents studied were found in

all the CFS patients studied and that none of the

researchers suggested that the agent alone caused

the CFS.


Other triggers explored were repetitive strain injury

(Eliana Lacerda, MD, PhD, London School of

Hygiene and Tropical Medicine) and disruption of

normal diurnal rhythms in children (Teruhisa Miike,

MD, Kobe, Japan).




Subgrouping by biologic abnormalities:

Another sign of the maturing of the CFS research

field is the broad agreement that the definition for

CFS results in a rather heterogeneous patient group

and that studies should seek to define subgroups of

patients using one or more biologic measures.

Several research groups reported evidence of immune

system and neuroendocrine abnormalities, building

on some of the earliest CFS reports in the biomedical

literature. One of the most impressive presentations

was delivered by Alan Light, PhD of University of

Utah. His group reported differences between CFS

patients, healthy controls and a smaller group of MS

patients on adrenergic and sensory receptor

peripheral blood cell gene expression after a modest

exercise challenge. The CFIDS Association of America

is providing support to expand the study that was

begun with a grant from the National Institutes of

Health.



The CFS group at the University of Miami (UM) and

collaborators presented several immune system

abnormalities in Gulf War Illness/CFS patients

following a graded exercise test, including elevated

levels of neuropeptide Y (NPY) (Mary Ann Fletcher,

PhD, UM) and a plasma cytokine shift from Th1

(antiviral defense) to Th2-type (proinflammatory

activation) immune response (Nancy Klimas, MD,

UM). These observations were confirmed by Gordon

Broderick, PhD, at University of Alberta who found

distinct patterns of coordinated change in NPY,

cytokine and cortisol concentrations at rest and

under challenge using data collected from the UM

subjects.



Researchers working with the Whittemore Peterson

Institute studied a group of CFS patients who were

found to have clonal T-cell rearrangements,

predictive of non-Hodgkin's lymphoma. These

patients demonstrated chronic inflammatory

stimulation and differential expression of human

endogenous retroviruses (Judy Mikovits, PhD).

Vincent Lombardi, PhD, showed that a distinctive

pattern of serum cytokines and chemokines could

distinguish between CFS patients who did and did

not have the clonal t-cell receptor gene

rearrangement.




Andrea Suarez Segade, MD of the University of

Barcelona, reported that there were significant

differences in the values of growth hormone,

prolactin and cortisol in women with CFS compared to

healthy women after an exercise challenge. A small

study at Bond University in Australia reported by

Ekua Brenu, HBSc, found that CFS patients

demonstrated significant decreases in respiratory

burst, while the number of T cells, monocytes and B

cells were comparable to healthy controls.


Most of these investigators expressed hope that

these findings, perhaps combined with other

measures of symptom expression or severity or other

biological measures, would yield characteristic

"fingerprints" for subtypes of CFS that would aid in

diagnosis and therapy.



Several of these studies (Light, University of Miami,

Segade) have used exercise challenge to identify

biologic differences that seem to be subtle at rest,

but are more pronounced after exertion. One

important study that found no meaningful difference

between CFS cases and controls, was presented by

Christopher Snell, PhD, of University of Pacific. His

group tested for a low-molecular weight RNaseL (37

kDa) and elastase activity as biomarkers for CFS, as

had been reported previously by other groups to be

abnormal in CFS. 22 CFS patients and 21 matched

controls underwent serial exercise tests and samples

were taken at various time points and then

processed by a commercial lab. Results were variable

and did not correlate with symptoms, illness status

or pre- and post-exercise. Dr. Snell concluded that

neither "RNase L ratio nor elastase levels have any

efficacy as biomarkers for CFS."




Metabolic/mitochondrial dysfunction: Three

researchers suggested that CFS stems from a

problem producing energy at the cellular level in the

mitochondria. Dr. Norman Booth of University of

Oxford presented results obtained from 71 CFS

patients using an ATP profile test combined with the

Bell Ability Scale as a measure of functional capacity.

The two collaborating physicians found a correlation

between the degree of mitochondrial dysfunction and

the severity of illness, suggesting that the fatigue in

CFS is due to cellular respiration dysfunction. Mark

Van Ness, PhD, of the University of Pacific reported

that half of the women with CFS displayed metabolic

dysfunction as assessed through a test-retest graded

exercise protocol; 56% of a group of patients with

high EBV/HHV-6 viral levels also showed quantifiable

metabolic dysfunction. Finally, Alan Light's data

(described above) indicate a problem in metabolism

that prolongs the sensation of muscle fatigue and

pain after exercise, even when the muscles are not

active.




Therapy/treatment: Although two sessions were

dedicated to pharmacologic and non-pharmacologic

treatment advances, unfortunately there was little

new presented. Cognitive behavioral therapy (CBT)

was addressed by two speakers, Greeta Moorkens,

MD, PhD, of Antwerp University Hospital, and Elke

van Hoof, PhD, of Vrije Universiteit Brussel. Dr.

Moorkens reported that the majority of 180 patients

treated with 10 sessions of CBT over six months

reported some improvement but did not show

statistically significant improvement on fatigue or

physical functioning scores. Dr. van Hoof confirmed

earlier studies that show a high percentage (30%) of

drop-outs due to deterioration during CBT trials. She

indicated that differing expectations between the

provider and the patient for treatment can affect

satisfaction and that communication is essential; yet

her studies do not support large scale application of

CBT. Michael Antoni, PhD, of University of Miami,

discussed a telephone-based program of Cognitive

Behavioral Stress Management that allowed patients

to receive information, relaxation training and

support without leaving home. Preliminary data

suggests that the program was well-accepted and

that patients showed improved quality of life and

some reduction in symptoms. Dr. van Hoof also

presented a study on Eye Movement Desensitization

and Reprocessing (EMDR) to decrease hypervigilance

seen among CFS patients. Preliminary data analysis

was also showing some benefits with physical

functioning. Patricia Fennell, MSW, identified

several types of trauma induced by CFS and other

chronic conditions.




Nicole Porter, PhD, of DePaul University presented

a review of trials of alternative therapies and

concluded that several have some potential for

future clinical research, but that no firm conclusions

can be drawn because of the limited number of

subjects and somewhat suspect methods used.

Among those with the most promise are acupuncture,

meditative practice and magnesium, L-carnitine and

S-adenoslymethionine (SAMe) supplements. Hirohiko

Kuratsune, MD, of Osaka City University reported

that supplementing the diet with essential fatty

acids (EFAs), zinc, copper, manganese and vitamins

B6 and B12 had demonstrated some effectiveness in

his patients. Dr. Yasuyoshi Watanabe, proposed

using functional foods, coenzyme Q10, applephenon,

imidazole dipeptide and crocetin to combat fatigue,

based on his studies at Osaka City University and

RIKEN (of Japan).




The studies of three pharmacological treatments

were presented: Ampligen, isopinosine and sodium

oxybate. David Strayer, MD, of manufacturer

Hemispherx, reported that Ampligen improved the

physical function of CFS patients as measured by

exercise treatment duration. He indicated that the

drug, now under review by the Food and Drug

Administration (FDA) for marketing approval, was

well-tolerated and that its use allowed patients to

reduce their dependence on other drugs. A decision

is expected from FDA in May 2009. Isoprinosine is

sold in Ireland and Costa Rica under the trade name

Immunovir. Maria Araceli Vera, MD, of University of

Miami, presented a chart review of 61 patients who

took isoprinosine for six months. Using data from

their charts to assess both clinical status and

immune status, Dr. Vera concluded that there was

highly significant improvement in both clinical and

immunological status, stating that a large,

randomized clinical trial would be appropriate based

on this review. Natalie Hone, MD, of University of

Miami, also presented results of a chart review of 27

CFS patients with documented alpha-wave intrusion

in slow-wave sleep who had taken sodium oxybate

(Xyrem) to treat this condition. 20 of these patients

reported improvement in their sleep after treatment.

Like her colleague, Dr. Hone concluded that further

studies are indicated.





Pediatric/childhood CFS: Several presentations

throughout the conference focused attention on kids

who get CFS. Leonard Jason, PhD, of DePaul

University reported that the pediatric ME/CFS criteria

published in 2006 were more effective than the 1994

Fukuda (adult) criteria as a diagnostic tool for

children and adolescents. Ritchie Shoemaker, MD,

of the Center for Biotoxin Associated Illnesses,

conducted a retrospective chart review of 163

patients ages 10-17 years to identify biomarkers that

would separate cases of CFS from non-cases. He

found an association of increased autoimmune

abnormalities and elevated levels of a regulatory

cytokine, TGF beta-1, that merit additional

evaluation. Greta Moorkens, MD, PhD, reviewed the

clinical charts of 81 patients ages 14-21 years who

were referred to a hospital clinic. Headache, muscle

ache, concentration or memory disorder and joint

pain were the symptoms most often reported. She

reported that vitamin D deficiency was common,

especially among the housebound patients, and that

there were three suicide attempts among the patient

group. 13 of 22 patients tested for sleep problems

were found to have them and 11 of 19 patients

referred to a psychiatrist were found to have a

depressive disorder as well. She underscored the

importance of thorough sleep and psychiatric

evaluations in this population.




Dr. Esther Crawley of University of Bristol (United

Kingdom) presented two studies of children with CFS.

First, she followed 46 children with CFS who were

housebound for one year at three different

assessment points. She compared them with children

with CFS who were able to attend clinic. The

housebound patients had higher scores on the

symptom inventories and had more co-morbid

conditions. 30% of the more severely ill patients

either recovered completely or had improved

sufficiently to attend some school by the time of

follow-up. Dr. Crawley's second study focused on

grouping 333 children with CFS/ME by symptom

assessment to determine if clusters would emerge

that might represent different underlying disease

processes. Factor analysis suggested three groups of

patients, while cluster analysis produced five

groups.



Laura Younis of Deakin University in Victoria,

Australia, studied cognitive function in a group of 27

adolescents and young adults with CFS and 27

healthy matched controls. She found that the CFS

patients missed 8.28 days of school per month,

compared to the 1 day per month for the healthy

students. While the CFS patients were unwell and

reported high levels of distress and disability, their

objective performance on the cognitive tests

performed in a laboratory setting was comparable to

that of their healthy peers. Dr. Younis suggested this

reflected the motivation of the CFS patients to do

well in the study and that it may not be indicative of

performance in classroom or home settings where

there are other influences and distractions.




The final group of childhood CFS (CCFS) studies came

from the group in Japan. Sanae Fukuda, PhD,

attempted to identify common characteristics of

children with CFS as risk factors for developing the

illness. She found that school problems were a better

predictor for boys who went on to develop CFS, while

family problems were more common among the girls.

They found that the "sleep score" was a predictor for

both groups. Kei Mizuno, PhD, found that selective

and divided attention processing was impaired in the

414 children with CFS studied, compared to 190

healthy children tested. He indicated that they are

now using functional MRI testing to clarify the neural

substrates associated with different subtypes of

attention processing deficits. Teruhisa Miike, MD,

PhD, showed that over 20 years during which CCFS

has been studied in Japan, they have linked it to

disruptions in the normal biological clock that is

evident in contemporary Japanese culture. Long-term

sleep deprivation, coupled with excessive bright light

exposure during nighttime hours (from TV, video

games, cell phones, etc.) upset the normal diurnal

rhythms and developed into CFS. He also noted that

30% of the CCFS cases have tested positive for

HHV-6A. He urged the importance of preventing CCFS

by maintaining normal activity and sleep schedules.





Genetics and genomics studies: There were several

presentations describing genetic contributions to

CFS. Marc Fremont, PhD, of Protea Biopharma

(Belgium), reported on differences in toll-like

receptor genes that are important for modulating

bacteria-induced immune activation that were more

frequent in CFS. Also, these investigators found

genetic differences in genes important in TH17

protein function. TH17 cells fight off bacterial

infections and abnormal function has been implicated

in intestinal diseases of autoimmunity. Mangalathu

Rajeevan, PhD, of the U.S. Centers for Disease

Control and Prevention, presented results from the

first CFS genome-wide association study. He

reported that variants in GRIK2, a gene involved in

glutamate transmission, and NPAS2, a gene

important in brain function, were associated with

CFS.  Further, CFS subjects with these gene

differences also showed correlation with gene

expression providing further evidence of

neuroendocrine and immune dysfunction in CFS. In a

targeted genetic analysis, Judy Mikovits, PhD of the

Whittemore Peterson Institute, found that variations

in HLA and KIR genes ˆ genes important in a proper

immune response ˆ might increase the risk for CFS.

Andrew Lloyd, MD, PhD, of the University of New

South Wales presented exciting findings on changes

in the functional polymorphisms for two cytokines in

particular, IL-10 and interferon-gamma. Subjects

with a "low-risk" combination of sequences were ill

for an average of 34 days, whereas those with the

"high-risk" combination remained unwell for 80 days

on average. Therefore, he posited, the intensity of

the inflammatory response may determines the

severity of the acute infection and duration of the

illness that follows.





Other Events



On Thursday evening, to welcome colleagues from

Japan and return the hospitality extended to us last

year when we visited Osaka City and Kobe, we

hosted a small dinner for Dr. Watanabe's team and

three of our funded investigators, Dr. Dikoma

Shungu and Drs. Kathy and Alan Light. While this

took us away from the patient reception at the hotel

that evening, it was a good opportunity to catch up

on the recent approaches being taken and advances

being made on both sides of the Pacific.



The Keynote Address was delivered on Friday, March

13, by the Honorable John Kitzhaber, former

governor of the state of Oregon. Dr. Kitzhaber spoke

about the need for sweeping health care reform. As

founder of the Archimedes Movement, he is

challenging the federal government to replace the

current outdated framework with a totally new

approach to providing health care services and

covering costs. His talk was not specific to CFS, but

was informative to providers and patients alike.




On Friday evening, about 75 people gathered at the

Nevada Museum of Art for a reception in support of

the IACFS/ME sponsored by Annette and Harvey

Whittemore of the Whittemore Peterson Institute.

There was no formal program, but Annette welcomed

the Honorable John Kitzhaber and several guests

representing the Nevada state legislature and

University of Nevada Reno who were pivotal in

helping establish the Whittemore Peterson Institute.

The museum's exhibits were open to attendees and

the event offered an opportunity for informal

socializing and networking.



On Saturday afternoon, the IACFS/ME held its

biennial business meeting for members and others to

hear organizational plans and to vote on nominees

to the Board of Directors. Installed as president was

Fred Friedberg, PhD and four newly elected

directors joined five others continuing for another

term on the Board. Suzanne Vernon, the CFIDS

Association's scientific director, is one of the four

individuals who joined the IACFS/ME Board.




It has become a tradition at these conferences to

hold an awards banquet on the night of the last full

day of the schedule. On Saturday, March 14, the

awards ceremony followed a large buffet dinner,

emceed by new IACFS/ME president Fred Friedberg.

The following individuals were honored:


     Benjamin Natelson, MD

     Governor Rudy Perpich Memorial Award


     Charles Lapp, MD

     Nelson Gantz Clinican Award


     Nicole Porter, PhD

     Junior Investigator Award


     Annette Whittemore

     Special Service Award


     Michael Antoni, PhD

     Nancy Klimas Research Excellence Award


     John Chia, MD

     Nancy Klimas Research Excellence Award


     Suzanne D. Vernon, PhD

     OFFER Research Excellence Award


     Molly Brown, MA

     OFFER Research Excellence Award



In summary, at this truly international meeting,

represented by 17 countries where CFS is being

studied, there was much enthusiasm for the varied

approaches being taken and the new technologies

being employed to investigate CFS. There was some

disappointment with the small and preliminary

nature of many of the studies, but this was largely

seen as a function of the meager funding streams

available in the U.S. and most other countries.

Hopefully when IACFS/ME convenes its next

conference in two years, some of these

investigations will have matured and there will be

more standardization of studies through enhanced

communication, established networks (like the one

being formed by the CFIDS Association's funded

investigators) and expanded funding opportunities.



Visit http://www.cfids.org/cfidslink/2009/040103.asp

for links to daily conference reports posted by the

Association to its Facebook page and links to other

organizations and conference resources.

( ~jan van roijen: see following bulletins of *Help ME

Circle* )




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leading edge. If accelerating the pace of CFS

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