Source: IACFS/ME
Date: April 4, 2009
Author: Rosamund Vallings
http://www.iacfsme.org/IACFSMEConferenceMoreInfo/SummaryReno2009byRosamundVallings/tabid/373/Default.aspx
The 9th International IACFS/ME Research and Clinical Conference
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Peppermill Resort, Reno, Nevada, USA
12-15th March 2009
I was privileged to attend the IACFS/ME 9th International Research and Clinical
conference from 12-15th March, 2009 in Reno, Nevada. Attendees from all around
the globe were present and much lively discussion ensued following the papers
presenting the latest cutting-edge research.
The main conference opened with an invited lecture from Yasuyoshi Watanabe
(Osaka,Japan). He spoke on the importance of Fatigue Science for Human Health.
He told us that fatigue is an important bio-alarm, without which we might lapse
into unrecoverable exhaustion, or even die. Fatigue is strongly correlated with
motivation. Fatigue decreases efficiency, and scientists are extensively
analyzing the causes of fatigue, looking at therapy to aid recovery and
preventative strategies. Of fatigue related illness, 30% suffer from Chronic
Fatigue Syndrome in Japan, of which 1.3% are children. Other main causes of
fatigue are other organic illnesses (28%), mental illness (30%), drug side
effects and the effects of surgery. The Japanese have developed a new
questionnaire and a fatigue scale. Much research is occurring in Japan with the
development of large new centres.
Dr Watanabe then focused on CFS, discussing potential immune, biochemical and
endocrine biomarkers. Plethysmography, visible and near infra-red markers for
analysis of serum samples, gene expression and APISST (which relates to cytokine
signals) are all being researched. HHV6 has been found to be physiologically
increased in saliva after hard work, with levels improving after holidays. There
are increases in HHV7 also after hard work and slightly less so in CFS. HHV6 is
directly shed into the saliva, while HHV7 is amplified in the peripheral T
cells. Brain function is studied using PET, functional MRI and MEG. Areas of the
brain associated with fatigue, pain and attention have been demonstrated. Other
CNS abnormalities include: abnormal acetylcarnitine levels in PET scans, reduced
binding potential of 5HTT, mood changes shown to relate to the dopamine system,
visual task activity lower in CFS on fMRI, and on MRI morphometry, there was
volume reduction in the prefrontal cortices. This latter finding may relate to
cortical plasticity, as it improves with CBT.
Work with animal models was discussed, looking at physical and mental fatigue,
infections and complex tasks. In general there was shortage of energy for
repair, changes in genes and amino acid changes with fatigue.
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Session 1
Pharmacologic and Non-pharmacologic Treatment Advances
The first paper was presented by Greta Moorkens (Antwerp,Belgium) and was
focused on their studies using combined CBT and Graded Exercise. 180 CFS
patients were studied and a number of onset triggers were identified, together
with co-morbidity factors such as depression, busy lifestyle and violence.
Patients and staff reported some personal benefits, but statistical analysis did
not show any significant improvement with combined CBT and graded exercise, and
this negative outline warrants further research. Recommendations were that GPs
needed help with suitable interventions via specialist expert advice.
Elke van Hoof (Brussels, Belgium) had looked at the influence of EMDR (eye
movement desensitization and processing) and biofeedback on the hypervigilance
in CFS. EMDR reduces amygdala reactivation. Patients were given 4 sessions of
EMDR and followed up 4 weeks later. There were no significant differences in
heart rate variability, but a positive trend was evident. All patients however
improved in physical functioning significantly in areas of vitality, fatigue and
concentration. They reported feeling more insight, more control and were
enthusiastic about this approach. There is need to look at the protocol further
and also deal thoroughly with other life stresses to get the maximum benefit.
Nicole Porter (Chicago, USA) reviewed some alternative medical interventions in
the management of ME/CFS and fibromyalgia. She found that several modalities
have potential for future clinical research. A limited number of studies have
been done with often suspect methodological quality. Few studies have been done
looking at laboratory outcomes of immune function, and there have been
inconsistencies of assessment instruments. There is a lack of randomized trials
and a lack of reporting of negative results. The strongest evidence for
treatments of useful value were in the cases of acupuncture and meditation.
There is great research potential for looking at supplements such as carnitine,
magnesium and S-adenosylmethionine. Qigong may also be helpful, but studies have
lacked controls.
Interferon and cytokine levels in the phase III trial of Poly I: Poly C12U
(Ampligen) was presented by David Strayer (Philadelphia, USA). Pre-treatment and
intra-patient changes from baseline were compared to see if the treatment had a
significant effect on serum levels. Patients had improved significantly in
treadmill tests and decreased use of other medications with this treatment, but
there was no significant modulation of interferons or cytokines. No safety
concerns were raised and the treatment was well tolerated. The decrease in use
of concomitant medications was an important point, as several of the medications
used regularly in CFS do cause prolongation of the QT interval, with possible
risk of death. Overall death rates in CFS patients due to heart failure, suicide
and cancer were reduced.
The patients' own experience of living with post-infectious fatigue syndrome
(PIFS) following an GI infection caused by Giardia lamblia in 2004 - Eva
Stormorken - (Vaaler, Norway) - Preliminary findings from a qualitative
interview study suggest that all the participants were healthy pre-giardiasis
and were either working or studying on a full time basis. Four years later the
mean functional level was still below 50% compared with pre-illness functional
level, and none were able to either study or work on a full time basis. Findings
also suggest that PIFS affects all aspects of life, including disrupted
partnership and identity, and loss of friends, leisure activities, as well as
work or education. In addition, most of the interviewees reported difficult
encounters with health personnel who lacked. Both physical and cognitive
complaints varied in number and severity.
Cognitive behavioural therapy was looked at from a patient perspective by Elke
van Hoof (Brussels, Belgium). 96% of the 100 patients studied were motivated
when starting CBT. 25% were using parallel medical treatments. Only 2% of those
studied reported total recovery, and 30% mentioned some improvement. 30%
reported no change and 38% were worsened. Only 25% were able to complete the
programme, due to the physical component. Results of this study do not confirm
effectiveness of CBT for ME/CFS, and large scale application is not supported.
CBT was reframed by Michael Antoni (Miami, USA), and he hypothesized that
chronic stress influencing the HPA axis may influence the severity of CFS via
changes in the pro-inflammatory cytokines. A cognitive behavioural stress
management programme (CBSM) was devised using a telephonically designed
programme (T-CBSM), after earlier success with group programmes. Participants
received 12 weekly sessions via a phone link. Muscle relaxation, imagery,
autogenic training, meditation and breathing exercises were included. Controls
received a series of health education modules also by phone link. Pain,
cognition and sleep symptoms all improved in the T-CBSM group and reduction in
Il-6 equated with symptom reduction.
Patricia Fennell (Albany, USA) addressed the role of trauma experiences causing
increased stress, which needs to be considered in chronic health management.
Trauma may be disease/syndrome related, iatrogenic, cultural, vicarious,
pre-morbid or co-morbid. Trauma is not a steady state and effects may wax and
wane. In CFS, disability issues can provide added stress/trauma. The Fennell
Four phase model can be an effective method for assessing and treating
illness-induced trauma.
The clinical and immuno-modulatory effects of Isoprinosine were discussed in a
paper presented by Maria Vera, (Miami, USA). 61 patients fulfilled the criteria
for inclusion in this study. Patients were treated with Isoprinosine 500/1000mg
(odd/even weeks) 3 times a day from Monday to Friday for 6 months. Clinical and
immunological assessments were made pre-treatment and post therapy. There was
highly significant improvement in the clinical scores of patients treated with
this drug at 6 and 12 month follow up. CD4+CD38 T cells were normalizing at 6
and 12 months, NK cell activity was improved and EBV titres had a highly
significant decrease after 6 months. No patients developed gout (a recognized
side effect) but 26% did experience gastro-intestinal symptoms. A larger
randomized trial would seem appropriate. The downside is that this is a very
expensive drug.
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Session 2
New Developments in Epidemiology
Causes of death in 36 patients with CFS was compared to deaths in non-CFS
patients by Rosamund Vallings, (Manukau, NZ). Causes of death in CFS patients
did not differ from non-CFS patients or NZ norms apart from a higher rate of
accidental deaths. It is probable that CFS patients can easily tire and overdo
physical and mental activities, putting them at greater accident risk. Risks of
late diagnosis of cancers were addressed, with a warning to make sure patients
do report new symptoms and attend for regular screening.
Tokuzo Matsui (Osaka, Japan) reported the need to revise the exclusion criteria
for mental health disorders in order for a diagnosis of CFS. The number of CFS
patients diagnosed initially by the 1992 definition increased by 10% when the
Japanese 2007 guidelines were used. Anners Lerdal (Drammen, Norway) also found
that mental stress, such as PTSD symptoms are strongly associated with fatigue.
Using multivariate analyses, demographic variables, mental stress, somatic
conditions and self rated health all made significant contributions.
Further work from the Dubbo Infection Outcomes Study was presented by Andrew
Lloyd (Sydney, Australia). Q fever is a zoonotic illness caused by Coxiella
burnetii infection. Some patients suffer long term serious disability.
Prolonged symptoms of post-infective fatigue were associated with more severe
illness, but not with persistence of the genomes of the infecting organism in
peripheral blood cells, alterations in immune responses or changes in the
proportions of immune cell subsets. The importance of prospective studies was
stressed.
Eliana Lacerda (London, UK) had looked at work related risk factors for chronic
fatigue. Bank workers in Brazil were the subjects of this study. Fatigue and
Chronic Fatigue in this group were strongly associated with RSI. Ergonomic
variables were also important determinants of CFS/ME like syndrome. Looking at
preventative measures in the work place seems essential, and also paying
attention to such issues as breathing, posture and adequate organizational
structures.
Roumiana Boneva (Atlanta, USA) found that in a community study, a positive
gynaecological history, such as early menopause, hysterectomy, oophorectomy etc
may be associated with CFS. The patients had more irregular periods than
controls, more births, and pain associated endometriosis. 53% had had a
hysterectomy compared to 40% of controls, 37% had had a D&C compared to 11% of
controls. She recommends a larger study.
Classification of persons with ME/CFS by types of fatigue was a useful study by
Aaron Boulton (Chicago, USA). Important subgroups emerged, and it is possible
that the fatigue patterns in these people may represent different subtypes. The
fatigue patterns are heterogeneous, and future research needs to focus on this.
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Session 3
Neuro-endocrine Advances
A. Suárez (Barcelona Spain) suggested that the measurement of hormonal values
in CFS patients could help with diagnosis. There were no significant differences
in ACTH parameters, but those with CFS had significant lowering of cortisol
levels on the 3 days of exercise challenge testing. The differences in prolactin
and growth hormone were not significantly different to controls.
Patients with fibromyalgia and/or CFS demonstrate sustained increases in gene
expression for metabolite sensing receptors and βadrenergic receptors on
leucocytes from 0.5 to 48 hours after exercise. This is the time when pain and
fatigue worsen, even when muscles are inactive. This study by Alan Light (Utah,
USA) suggests a predisposition for these receptors to increase dramatically
after exercise, stress and infection. There is potential for the increases in
gene expression to provide biomarkers.
Mary Ann Fletcher (Miami, USA) found that Neuropeptide Y (NPY) correlates with
symptom severity in CFS. NPY was elevated in CFS compared to controls (p=.001)
though there was some overlap between controls and CFS. This could be used as an
assay to correlate with severity of illness, particularly in relation to
psychological symptoms. NPY may be a potential biomarker for CFS and may be an
important mediator of the illness itself, thus it is a target for therapeutic
strategies. But for now it needs to be combined with other potential biomarkers
such as gene expression. NPY needs radio-active assay and cheaper methods need
to be developed.
Jonathan Kerr (London, UK) discussed the impact of stress on the likelihood of
developing CFS following Parvovirus B19 infection using negative life events,
perceived stress and negative affect. 5 of 39 cases developed CFS and 4 of the 5
were viraemic at follow up. Stress index was significantly associated with the
development of fatigue during the acute phase of illness, and also with chronic
fatigue and arthritis in the 3 years following the acute B19 infection.
Statistically it was found that a high stress index was the primary predictor of
CFS/ME 1-3 years following the initial infection. Of the 5 cases followed, IV
immunoglobulin therapy for B19 gave benefit, with 3 patients recovering
completely. 2 withdrew because of headaches. 400mg.kg/day was given IV for 5
days.
The immunomodulatory effects of sodium oxybate in patients withα -wave
intrusion during deep sleep was studied by Natalie Hone (Miami, USA). The
average dose was 6.1gm daily. The study revealed a high rate of sleep disorders
in CFS patients. Intrusion was the most common disorder, more so in women than
men. 45.9% of patients had sleep apnoea (males more than females). Sodium
oxybate had no significant immunomodulatory effects in patients with α
intrusion, but sleep improved markedly clinically.
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Session 4
Infectious Diseases Research
Kenny de Meirleir (Brussels, Belgium) opened this session with an overview of
his research looking at herpes virus and parvovirus B19 DNA in the gastric and
intestinal mucosa of patients with CFS. HHV7 was frequently found in both
patients and controls. EBV and HHV6 were also detected in patients and controls,
and HHV6 was detected significantly in a small subset of patients in duodenum
and stomach. However, parvovirus B19-DNA was detected significantly more
frequently in the stomach of patients more frequently than controls, and B19 DNA
was found in the peripheral blood of those biopsy-positive patients. One case
study of a 20 year old female (+ve B19) was treated for 4 months with
gamma-globulin and there was no residual load o B19.
Viral gene micro-array was used to detect viral DNA in 40 patients by the team
led by Judy Mikovits (Reno, USA). 1608 viral transcripts, microRNA or endogenous
viral elements were observed in the subgroups of patients and controls. Adeno-
and rhino-viruses were the most commonly detected in the controls. Herpes
viruses (particularly HHV7 and CMV) predominated among the CFS patients. Human
endogenous retroviral elements were also differentially expressed. This may be
significant in CFS as neuro-degeneration can result. Bombyx mori densovirus was
the 5th most highly expressed virus in CFS patients, and adeno-associated-virus
3,3e,4 and 2 were all in the top 20expressed in patients but not in the
controls. These viruses require helper viruses such as herpes or adenovirus to
replicate. These studies may provide insight into the immuno-pathogenesis in
CFS.
Studies by Modra Murovska (Riga, Latvia) concluded that active infection with
HHV6 and HHV7 is more frequent in CFS patients than in healthy blood donors.
B19 DNA was also found in the plasma of patients but not controls.
Reactivation of these viruses may lead to immune dysfunction.
Barbara Cameron (Sydney, Australia) presented further work from the Dubbo
Infection Outcomes Study. This study looks at the evolution of CFS following
PIFS prospectively. All 20 of the subjects (10 patients and 10 controls) were
sero-positive for HHV6 and 10 were positive for CMV (5 patients and 5 controls)
at baseline. Some EBV titres increased over time in patients and controls. Over
time there was no correlation between symptom scores and antibody titres. The
data do not support the hypothesis of ongoing active EBV,HHV6 or CMV in the
pathogenesis of PIFS or CFS.
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Session 5
Latest Research in Immunology
The immunological profile of an Australian CFS female population was presented
by Ekua Brenu (Gold Coast, Australia). She noted a 0.2% prevalence of CFS is
Australia, with $A59 million per annum spent in the management of CFS. Blood
samples were taken from 8 CFS patients and 8 controls. Neutrophil function was
studied with respect to respiratory burst and phagocytic activity. CFS patients
demonstrated significant decrease in respiratory burst, but increased phagocytic
activity did not attain significance. T cells, B cells and monocytes were
observed in patients and controls.
Christopher Snell (Stockton, USA) did not find that either RNaseL ratio or
elastase have any efficacy as biomarkers for CFS. There was high variability for
both measures in CFS and controls, and these levels may be influenced by factors
other than illness. RNaseL activity may not be unique to CFS.
Gordon Broderick (Edmonton, Canada) found that subjects with Gulf War Illness
(GWI) can be discriminated by demonstrating significantly different
neuro-endocrine-immune dynamics in response to exercise. Changes in cytokines,
NPY and cortisol are evident both at rest and much more so under challenge, and
could separate subjects completely from the control group.
Subgrouping of CFS patients was addressed by Vincent Lombardi (Reno, USA)
looking at cytokine and chemokine profiles. He used microarray, a Random Forest
computational programme, to delineate CFS patients from healthy controls. Each
subgroup was found to display a unique cytokine/chemokine signature. This has
potential to subgroup patients using serum biomarkers in an approach to
appropriate treatments. (Anti-inflammatory, antiviral or antimicrobial).
Nancy Klimas (Miami, USA) has found that cytokine abnormalities are common in
CFS, with potential as biomarkers or targets for treatment strategies. Cost
effectiveness with newer techniques should make these tests more readily
available to evaluate a large panel of cytokines. The study presented
demonstrated a disorganized pattern of the cytokines regulating Th1 dependent
lymphocyte function, critical to antiviral defence. The data supports a Th2
shift, proinflammatory cytokine cascade activation and down regulation of
components of cytotoxic cell function.
Nicole Porter (Chicago, USA) showed the importance of looking at viral versus
non-viral onset in CFS, with differences in cytokine production and expression.
In the viral group there was Th1 shift and in the non-viral group a Th2 shift.
Viral and bacterial onset patients should be separated in future studies. A
pattern of protein production in the non-viral group is likely to be immune cell
mediated anti-inflammatory activity with chronic suppression of immune system
activation. In the viral group, there is pro-inflammatory activation with
persistent hyper-immune response.
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Session 6
Assessment Issues from Biological to Behavioural
Structural Equation Modeling (SEM) is a data-analytic technique. Brian Gurbaxani
(Zurich, Switzerland) has used it to look at CFS heterogeneity. This is an
attempt to integrate the variables in CFS particularly in relation to HPA and
stress related variables.
Leighton Barnden (Adelaide, Australia) analyzed brain MRI images in 25 CFS
subjects and 25 matching controls. Voxel based analysis of the images was used,
and a voxel was described as a 3D pixel. There were changes in the midbrain of
patients, which could account for some of the CFS symptoms, such as changes in
the reticular activating system and the red nucleus. No changes were seen in the
amygdala and there was no significant difference in grey or white matter.
Changes in the medulla and insular were consistent with the autonomic
dysfunction seen in CFS.
A diagnostic test for the identification of metabolic dysfunction was discussed
by J.Mark VanNess (Stockton, USA). Two graded exercise tests with cardio-
pulmonary analysis were performed within 24 hours of each other. There was a
'fatigue effect' of prior physical activity not characteristic of other
illnesses. There was reduction of peak oxygen consumption and/or oxygen
consumption at anaerobic threshold in CFS patients and in particular those with
a high viral load. This provides evidence of metabolic dysfunction.
Norman Booth (Oxford, UK) described work on mitochondrial dysfunction in CFS.
An 'ATP profile test' has been designed for CFS and other energy depleted
conditions. 5 factors were collated and multiplied together to produce the
mitochondrial energy score. CFS affects every cell in the body and a
mitochondrial disorder seems a likely possibility. This test is able to
differentiate patients whose fatigue is due to psychological factors from those
who have insufficient energy due to cellular respiration dysfunction.
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Session 7
New Developments in Pediatric ME/CFS
Identification of biomarkers for CFS in children (8-17 years old) looking at
specific genetic and innate immune parameters was the object of study presented
by Ritchie Shoemaker (Maryland, USA). He had found an association of increased
auto-immune abnormalities and elevated TGFβ, a cytokine associated with
abnormalities in T regulatory lymphocyte function. All cases of CFS were clearly
identified.
Leonard Jason (Chicago, USA) examined the criteria used to diagnose ME/CFS in
pediatric samples. The 2006 criteria for diagnosing pediatric CFS evidenced 97%
sensitivity and 100% specificity. Findings suggest that the 1994 Fukuda criteria
are less effective in making a correct diagnosis, with only 76% sensitivity.
The clinical characteristics of 81 Belgian adolescents with Chronic Fatigue were
described by Greta Moorkens (Antwerp, Belgium). One in three complained of
headache or muscle ache, one in five complained about concentration or memory
problems. Sleep studies and psychological testing was only performed in one in
four of the group (probably due to parent or adolescent opposition) but were
found to be abnormal in 60% of those tested.
Up to 68% of children with CFS are prevented from attending school, and the
characteristics and recovery of these housebound children was addressed by
Esther Crawley (Bristol, UK). Of 46 children assessed, 13 did not have a primary
diagnosis of CFS, despite having been diagnosed by a pediatrician. This was a
prospective study and at follow up (between 8 and 39 months) 4 had recovered
completely and 6 were well enough to attend school. She then looked at whether
patterns of symptoms suggest distinctive subtypes of pediatric CFS. She
concluded that CFS is heterogeneous in children and the different factors may
represent different underlying disease processes. Age, length of illness,
anxiety or depression had no bearing on the 3 different factors identified by
factor analysis. Cluster analysis identified 5 groups of children, which could
be discriminated using regression analysis, which showed significant differences
between the groups in terms of number of symptoms, fatigue and physical
functioning.
Sanae Fukuda (Osaka, Japan) used sleep scores to distinguish between children at
high risk of developing childhood CFS and general healthy students. The
sensitivity of the sleep score was 85 with a specificity of 75.4. Intervention
with sleep practices and CBT should be considered for high risk children. Also
from Japan Kei Mizuno (Osaka, Japan) had looked at selective and divided
attention in childhood CFS. Findings suggest that this maybe impaired. 3 types
were identified. Functional MRI will be used to clarify the neural substrates
associated with divided attention.
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Session 8
Research Developments in Genetics
The session opened with an overview of Genomics in CFS by Jonathan Kerr (London,
UK). 88 CFS associated genes have been identified by microarray. 85 are
upregulated and 3 downregulated. Several other diseases have also been looked
at. Clustering has identified 7 subtypes in the 55 patients studied, and 5 genes
showed therapeutic potential. There is therapeutic potential in that 5 of these
genes are known to be targeted by experimental or licensed drugs. These include
some of the cancer and rheumatic drugs.
Microbial infections are associated with CFS, and it is hypothesised that
specific organisms maybe associated with the subgroups. A trial of 62 patients
(including 6 with Q fever) was undertaken. There were 14 with endogenous
depression and 29 normal blood donor controls. Differential expression was seen
for all 88 genes in the patient group. Similar genes were seen in the Q
fever-CFS group. The depressed patients were similar to the normals except for 5
upregulated genes. QPCR datafor the 62 new patients were clustered with the 55
previously tested CFS patients. 8 subtypes were identified. 12 of the genes are
known to be linked with the pathogenesis of EBV infection. Future work needs to
look at larger cohorts, longer term studies and biological relevance of the
subtypes.
Marc Fremont (Brussels, Belgium) reported on gene polymorphism, studies of which
support the implication of intestinal dysfunction and activation of the Th17
axis in CFS. This opens a new perspective regarding treatment. The hypothesis
that immune activation is mediated by Th17 cells in these patients is supported.
There was a higher frequency of alleles making these patients more susceptible
to gram negative enterobacteria.
Toni Whistler (Atlanta, USA) used gene arrays to look at the mediators of NK
cell function. She found that there was decreased functional capacity of NK
cells in Gulf War Illness. There was impaired immune function involving Th2 and
proinflammatory cytokines, cytokines, cytotoxic NK cells and T cells, and
dysregulated mediators of the stress response such as salivary cortisol. These
differences were augmented by exercise challenge. Laboratory diagnostic tests
maybe developed as a result of this research.
Further work from St George's, London was presented by Robert Petty (London, UK)
who had looked at microRNA patterns in CFS. MiRNA expression was analysed in
PBMC samples of 15 patients and 30 normals. Microarray analysis identified
differential expression of 28 miRNA, 5 of which were confirmed using Taqman
QPCR. Using this method, each of the 5 showed elevated expression in CFS with
increases over 1.5 fold compared to controls. There is potential for this to be
used as a biomarker.
Lihan Zhang (London, UK) discussed their gene database of 117 CFS patients.
The 8 genomic subtypes had distinct differences in SF-36 scores, clinical
phenotypes, severity and geographical distribution. Antibody testing was done
for EBV, enterovirus, Chlamydia pneumoniae, Coxiella burnetii and parvovirus B19
an revealed subtype-specific relationships for EBV and enterovirus – both
being common triggers in CFS. There is potential for treatment and further study
is warranted.
A genome wide study of CFS identified candidate genes not considered in previous
studies and was discussed by Mangalathu Rajeevan (Atlanta, USA). Polymorphisms
were found to correlate with gene expression and were strong predictors of
disease, and need further investigation.
Judy Mikovits (Reno, USA) concluded that preliminary data suggests that HLA and
KIR variation might contribute to the risk of CFS. If HLA is not expressed, NK
cells kill the target (viral infected) cells
Andrew Lloyd (Sydney, Australia) found that cytokine polymorphisms have a
synergistic effect on the severity and duration of acute infective illnesses and
PIFS. Analysis of samples from 300 patients who had had EBV, Q fever and Ross
River Virus (from the Dubbo Infection Outcomes Study) were analysed. High
producing IFNγ+874 T/A and low producing IL10-592C/A polymorphisms were both
significantly associated with increasing illness severity. Variations in
intensity of the inflammatory response underpin the severity of acute illness
and can predict the duration of PIFS across varied infections. He stressed the
importance of looking at phenotypes prospectively. The Dubbo study found no
evidence of persistent antigen or chronicity of cytokines.
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Session 9
Advances in Brain Functioning
Elke van Hoof (Brussels, Belgium) discussed the issue that CFS influences
cognitive functioning, attention and memory. There seems to be slower
information processing. Her study examined reaction speed in CFS, and looked at
whether this is negatively influenced by external stimuli such as physical
complaints. It was found that CFS patients were more distracted by their bodily
focus, which in turn negatively influenced cognitive performance. This slow
processing speed is partially responsible for the cognitive malfunction in CFS.
Tasks requiring complex processing are affected.
EEG data can discriminate 905 of CFS patients from healthy controls and patients
with depression according to work by Frank Duffy (Boston, USA). The diagnostic
label of CFS may often be misapplied in community practices, and this can lead
to data discrepancies. This study has shown that CFS is a condition causing
objective and measurable peturbations in CNS function.
Cognitive function in adolescents and young adults with CFS was presented by
Laura Younis (Melbourne, Australia) The CFS patients did perform as well as
controls on educational tests (verbal and mathematical) These findings were
unexpected as the tests were challenging and fatiguing and involved a large
neuropsychological test battery.. These patients had reported more school
absenteeism, depression, sleep disturbance, cognitive dysfunction and other
symptoms than controls. Strong motivation to perform well may not reflect
typical performance of these students if they had been in an educational
setting.
Assessment of amino acid neurotransmitter function was performed in CFS, major
depression and healthy volunteers and was presented by Dikoma Shungu (New York,
USA). There were no significant abnormalities in regional amino acid
neurotransmitter function in CFS. There was confirmation of reductions in
occipital GABA in major depressive disorder.
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Session 10
The Japanese Experience
Yasuyoshi Watanabe (Osaka, Japan) gave a good overview of the Japanese
development of anti-fatigue food and equipment. Animal and human studies were
covered. They had developed scales for quantification of fatigue, and then
tested a variety of products. Animal models were initially used to evaluate the
effects of supplements, anti-oxidants and substances for energy. Many biological
and physical measures were done. Various products were found to be of use. These
included: 1) Applephenon - a polyphenol extract from unripe apples. 2) Imidazole
dipeptide (high in chicken breast and animal muscle) which has an antioxidant
effect and is produced as a drink. 3) Co-enzyme Q10. 4) Epigallo catechin
gallate. 5) Crocetin (carotinoid dicarboxylic acid) from the crocus flower.
Physical therapies found to be of use included mildstream bathing (a micro-
bubble bath). Animal therapy and music therapy were among other approaches found
to be of use.
The relationship between fatigue and diet was covered by Hirohiko Kuratsune
(Osaka, Japan). A 20 item questionnaire was administered to 131 female students,
and they were then classified according to the fatigue score. It was found that
students frequently missed breakfast and lunch. There was low calorie, fat and
carbohydrate intake in the most fatigued. Very significant fatigue correlated
with low rice, fish and omega 3 intake. Zinc, copper and magnesium, vitamins B6
and B12 were all low in the severely fatigued. Autonomic nervous system
activity using HRV analysis was also studied in fatigued patients. A relative
sympathetic nerve dominance was associated with the fatigue state.
Chaos analysis was used to evaluate the fatigue state associated with labour,
and discussed by Seiki Tajima (Osaka, Japan). Overwork is a big issue in Japan.
Beverage factory workers were assessed using the Artett C system. Subjects were
divided into 3 groups depending on fatigue level, and autonomic function was
assessed. There was no significant difference in the 3 groups using analysis of
maximum lyapunov exponent and correlation dimension analysis, and between low
frequency and high frequency ratio (spectral analysis). This is the ratio
between the sympathetic/parasympathetic systems. Further studies are needed to
reveal differences from pathological and recoverable fatigue using these
methods.
The pathophysiology of CFS in childhood in Japan was presented by Teruhisa Miike
(Kobe, Japan). Japanese children are found to be often active till late at
night, exposed to a lot of bright lighting and a hard daily schedule coupled
with excessive information from TV, games, cell phones etc. Despite going to bed
very late, children still need to get up early, and thus become sleep deprived.
There is a breakdown in the body clock. They can then suddenly develop a
hypersomnia type sleep disorder and childhood CFS. Long sleep gives no
improvement, and many symptoms occur fitting the criteria for CFS. Activated
enzyme depletion leads to mitochondrial dysfunction. There is decreased cerebral
blood flow. There may also be increased risk of cancer. The aim should be to
prevent this set of circumstances.
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Poster Presentations
A large number of posters were presented with a wide range of topics from around
the world. I was not able to view them all, but those I did manage to see are
described:
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Pharmacologic and non-pharmacologic treatment advances
Effectiveness of oral NADH in the treatment of CFS - Jose Allegre (Barcelona
Spain) concluded that oral NADH does not seem to modify clinical variables, but
some benefits were seen in anxiety levels, but depression increased. In effort
tests there was some significant reduction of maximum FC.
Partner relationship influence on functional capacity in CFS women - A. Blazquez
(Barcelona, Spain) - Neurocognitive dysfunction correlated positively with the
relationship and significantly influenced ventilation and supramaximal exercise.
Role of erythrocyte aggregation and deformability in CFS - Ekua Brenu (Gold
Coast, Australia) - found that there were no abnormal changes in the rheological
characteristics of erythrocytes in CFS. Deformability and aggregation are not
therefore likely to be markers for CFS.
Post-Cancer Fatigue (PCF) is not associated with altered cytokine production -
Barbara Cameron (Sydney, Australia) - findings argue strongly against the notion
that PCF is mediated by peripheral inflammation.
Pacing as a dynamic embedded, embodied treatment/prevention strategy in CFS -
Bruce Carruthers (Vancouver, Canada) - Pacing is a strategy that patients learn
gradually to adjust their activity/rest sequences and treat their fatigue in a
preventative way.
Oxygen toxicity as a locus of control for CFS - Paul Cheney (Ashville, USA) -
Concluded that CFS is an oxygen toxic state. This is less a cause of CFS but a
final common pathway downstream from etiologies, but which may determine
outcome.
Cell associated therapy for CFS - Paul Cheney (Ashville, USA) - has found that
therapy with low molecular weight peptides from cell-associated mammalian tissue
homogenates (porcine) appear to offer significant benefit in CFS. Use of several
tissue extracts appears to be more successful than only one.
Oxymatrine for the treatment of CFS associated with chronic enterovirus
infection - J. Chia (Lomita, USA) - This treatment showed significant benefit,
with a shift in immune response in the Th1 direction, which correlated with
symptomatic response. Oxymatrine maybe an effective immune modulator in CFS
before definitive antiviral therapy becomes available.
Serving Students with CFS and other chronic illnesses - Patricia Fennell (New
York, USA) - described a workshop for educators to discuss the needs of of those
with chronic illnesses. As a result educational services can be improved for
students using the Fennell Four Phase Model.
US Government strategy and funding of CFS research compared to similar illnesses
- Kenneth Friedman (Newark, USA) - Of the US Government research effort into
neuro-endocrine-immune disorders (NEIDs), Lyme disease has shown the most
progress. Despite the government spending more on GWI there is still no
diagnostic test or specific medication. New research strategies and funding
mechanisms are needed for illnesses such as CFS.
Amygdala retraining techniques may improve outcomes for patients with CFS -
Ashok Gupta (London, UK) - had done a clinical audit of subjective outcomes.
This revealed higher rates of improvement in comparison to remission rates in
other intervention studies. No control or placebo group was used and future
studies will incorporate this.
Treatment of Cryptostrongylus pulmoni, a new parasite found in CFS - Lawrence
Klapow (Santa Rosa, USA) - This is a chronic roundworm parasite found in a
number of patients studied. It reproduces in the lungs and GI tract. It appears
to trigger CFS symptoms during its reproductive stage. Symptoms were relieved
with Ivermectin, weekly inhalations with nebulised ethanol and treatment of the
GI tract with anthelminthics.
Predictors of fatigue in patients with MS - Anners Lerdal (Drammen, Norway) -
The main predictors of fatigue were fatigue scores and fatigue caseness at
baseline. Poor general health and perceived cognitive impairment also predicted
higher levels of fatigue.
Is there an association between exposure to chemicals and CFS? - Luis Nacul
(London, UK) - existing evidence remains inconclusive as to the association
between exposure to chemicals and CFS, and there is need for well designed
epidemiological studies.
Similarities of CFS and autism spectrum disorders: comparison of blood
co-infections - Garth Nicolson (Huntingdon Beach, USA) - Chronic infections
are similar in both those with CFS and a large subset of patients with
neurobehavioural disease. The 3 infections seen were mycoplasma species,
Chlamydia pneumoniae and HHV6.
Effects of a dietary weight supplement on fatigue, appetite suppression and
weight-loss: implications in CFS - Garth Nicholson (Huntingdon Beach, USA) -
The product used was an amaylase inhibitor + NT factor (HealthyCurb). Notable
appetite suppression occurred coupled with significant weight loss. The group
showed an overall decrease in fatigue, with improvement in lipid profiles and
cardiovascular health. There were no adverse effects clinically or
biochemically. This seems a safe option for those with CFS wanting to lose
weight.
Improved renal function in CFS patients with IV immunoglobulin treatment - Tae
Park (Seoul, Korea) - Improved renal blood flow as a result of this trial may be
evidence of corresponding cerebral blood flow, as patients on treatment
experienced improved cognition. A further poster looked at the risk of CFS
patients developing chronic kidney disease. The risks showed decreased
glomerular filtration rate in many CFS patients, and recommendations are that
kidney function should be checked regularly in CFS. Cognitive function was
further investigated in another poster with positive outcome in those treated
with IV immunoglobulin.
Lymphatic drainage of the neuroaxis and the central rhythm impulse - Ray Perrin
(Preston, UK) - hypothesized a model for pathological links to CFS. Cranial
rhythm impulse may be the rhythm produced by a combination of cerebrospinal
drainage of the neuroaxis and sympathetic induced pulsations of the central
lymphatic drainage. Osteopathic manual treatment can reduce the severity of CFS.
Muscle fatigue in CFS and its response to a novel manual therapeutic response -
Ray Perrin (Preston, UK) found that post-exercise muscle function in CFS is
improved following specialized osteopathic intervention. Fatigue in this
disorder is considered not due to myopathic changes, but a consequence of other
extrinsic causes, such as a reduction in lymphatic drainage.
VDR receptor competence induces recovery from CFS - Amy Proal (New York, USA) -
has a working model of CFS in which a micorobiota of chronic pathogens
accumulate a metagenome that is able to dysregulate the innate immune response,
and cause the systemic inflammation characteristic of the disease. The process
has been reversed using a VDR agonist (olmesartan medoxomil) and sub-inhibitory
antibiotics.
A parent advocacy guide advising how to obtain educational services for children
with neuroimmune disease - Laura Baker (Santa Barbara, USA) and Karla Rogers
(Nevada City, USA) produced a comprehensive resource guide to assist parents
meet their child's educational needs.
Utilization of CFS continuing medical education courses - Hao Tian (Atlanta,
USA) - this course was described and confirmed as an important online source for
continuing medical education. There is a well utilized Primary Care course and
one for allied health professionals. In a 5 month period, 283 participants
received CME certificates.
The self-regulatory model in women with CFS and MS: illness representations,
coping strategies and outcome - Elke van Hoof (Brussels, Belgium) - Patients
were shown to determine the degree of dysfunction and illness related behaviours
in relation to their subjective experience of the disease. Findings in the
study will help determine what strategies may be effective in improving
function.
Treatment study of methylation cycle support - Richard van Konynenburg
(Springfield, USA) - Treatment designed to support the methylation cycle appears
very promising and seems worthy of a more controlled study. Results are
consistent with the glutathione depletion-methylation cycle block hypothesis for
CFS. Treatment included hydroxocobalamin, 5-methyltetrahydrofolate and folinic
acid, with nutritional support.
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Virology/microbiology Research
Post-infectious fatigue syndrome following giardia infection - an ongoing
multidisciplinary five-year follow-headed by Prof Harald Nyland - presented by
Eva Stormorken - (Vaaler, Norway) - Findings support the existence of PIFS
following giardiasis. Interventions consisted of medical care, clinical
assessment and an educational course. Currently a work-related rehabilitation
programme is taking place. Prospective studies are required to determine
functional outcome.
6 years experience in a specialized unit in the diagnosis of CFS - José Alegre
(Barcelona, Spain) - The SFC is the main tool for diagnosis in this specialized
unit. A variety of diagnoses of fatigue are described. Analytical, imaging and
psychiatric assessment did not provide diagnostic tools adequately.
Family response when a parent has CFS - Julie Donalek (Chicago, USA) - A wide
range of effects on the family are presented such as 'a changed life', 'a
shrinking exterior world', 'reorganizing family management', 'struggle for
normalcy' etc These issues need to be addressed for the family as well as the
patient.
Socio-demographic variables, depression, sleep quality and functioning, and the
relationship to fatigue in the acute phase of a stroke - Anners Lerdal (Oslo,
Norway) - Symptoms of depression and poor general health are related to the
experience of fatigue in these patients, suggesting the need for further
research into the complex nature of fatigue.
Prevention of CFS - Phillipe Tournesac (Dijon, France) - A questionnaire has
been developed to identify patients described as 'hypersensitive' and more
likely to develop illnesses such as CFS and FM. This could provide a means of
identification and preventing the evolution of toward CFS and related syndromes.
Many simple preventative approaches can be included such as sleep, nutrition and
exercise.
Could CFS be caused by allergen-induced immune activation in individuals who
respond with excessive and prolonged cytokine production due to variant genes,
and who have enhanced susceptibility to cytokines. - Gina Watkins (Sydney,
Australia). A literature search was presented together with further study from
the Dubbo infection outcomes. This confirmed that further research is needed
looking at the immune response and cognitive function following allergen
exposure.
Remodeling of lymphocyte-cytokine networks in GWI under challenge - Gordon
Broderick (Edmonton, Canada) - Characteristic immune responses occur
spontaneously in these patients after exercise challenge, and resolve once the
challenge is removed. Results suggest a potential shift in the regulation of
body fat and energy metabolism in GWI and a bias toward Th2 mediated humoral
immune response.
A comprehensive analysis of serum cytokines in PIFS: a masked case control study
- Barbara Cameron (Sydney, Australia) - The data did not support the hypothesis
of ongoing cytokine activity in the circulation in the pathogenesis of CFS or
PIFS.
Comparison of immunoperoxidase staining of stomach biopsy, neutralizing
enterovirus antibody and whole blood viral RNA testing, for the diagnosis of
chronic enterovirus infection in patients with CFS - John Chia (Lomita, USA) -
EV VP1 staining of stomach biopsy is more sensitive than either commercially
available neutralizing antibody test or qualitative enteroviral RNA
determination of the blood, for the diagnosis of chronic enteroviral infection.
Elevated EV antibody titre can confirm the particular serotype involved.
Decreased perforin and granzyme protein expression of cytotoxic T cells and NK
cells from CFS patients - Deborah Goetz (Reno, Nevada) - this study corroborated
the Klimas et al study. NK cells showed altered expression of PRF1 and GZMB not
due to increase in CD56 subset. T cell abnormalities suggest prior antigen
exposure and possible impaired memory function.
A re-analysis of the Dubbo Infections Outcomes Study post infective fatigue
cytokine dataset. - Brian Gurbaxani (Sydney, Australia) - Cultured cytokine
values do appear to oscillate over time. The oscillations may help distinguish
PIFS cases from controls within each infective group, and appear to be different
for each of the 3 infections studied. (EBV, Ross River Virus and Q fever)
Ion channel function and CFS - Susan Hagan (Glasgow, UK) - Identification of
changes in gene expression of a number of ATPase enzymes and ion channels using
DNA microarray indicates a potential role for ion channels and ATPase function
in the pathology of CFS. This may help formulate a rational hypothesis for the
pathogenesis of CFS.
The RNAseL antiviral pathway and its role in chronic inflammation and CFS -
Vincent Lombardi (Reno, USA) - Results confirm that proteosymal degradation of
RNaseL is triggered by PMA in human cell lines, and this inflammatory response
can be prevented by anti-inflammatory agents that block NF-kappa,betaβ.
TGFbeta-1 in the treatment of autoimmunity in CFS associated with HLA DR by PCR
- Ritchie Shoemaker (Pocomoke, USA) - The ability of losartan (up to 50mg
daily), an angiotensin receptor blocker, labeled for treatment of hypertension,
to lower TGFbeta may affect TH17 cells that in turn affect T regulatory cells.
Losartan may have a role in the innate immune abnormalities in CFS.
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Assessment issues from Biological to Behavioural
Measuring fatigue pre and post exercise using SF-36, MFI-20 health and wellbeing
surveys - Katie Baroni (Stockton, USA) - the SF-36 and MFI-20 clearly
differentiate between CFS and controls. The SF-36 did not detect significant pre
to post test changes in the CFS group.
Functional impairment in an environmental clinic sample - Alison Bested
(Toronto, Canada) - a wide representation of the profiles of 128 CFS patients
diagnosed with CFS,FM and MCS. Results were consistent with findings in other
countries and patients' reported difficulties working and caring for homes and
families. Early comprehensive assessment and medical management, social support,
and assisted non-discriminatory access to consistent financial means could avoid
deterioration associated with prolonged illness.
Diagnosis of CFS - Bruce Carruthers (Vancouver, Canada) - describes clinical
experience with comments regarding the influence of different attitudes on the
process of diagnosis of CFS and other syndromes. 3 issues are covered:
nominalist attitude, complementary attitude and causal influences felt directly
in everyday life. He comments that we do need to pay more attention to the
earlier phases of diagnosis not just the end point.
Unusual dietary intake among CFS patients - Alexandra Caspero (Stockton, USA) -
a diet history questionnaire (NIH) was used. Dietary interventions maybe
efficacious as adjunct therapy.
The emergence of fatigue science - Fred `Friedberg (New York, USA) - A study of
literature on pain and fatigue were reviewed. The study provides encouraging
signs of increased scientific attention to fatigue. The future direction of
fatigue research is uncertain as there is no clearly delineated domain of
fatigue with respect to both peer review journals and federal funding.
Replication of an empirical approach to delineate heterogeneity of CFS - Brian
Gurbaxani (Sydney, Australia) - Data support the contention that chronic
medically unexplained fatigue is heterogenous and can be delineated into
discrete endophentypes, and this should be pursued further. This could help
understand etiology and provide more patient focused treatments.
Frequency and content analysis of CFS in medical textbooks - Leonard Jason
(Chicago, USA) - Findings suggest that CFS is underreported in medical
textbooks. There is a need for CFS to be more represented in text books, with
more comprehensive coverage provided to include etiology, prevalence, criteria
and treatment options.
A closer examination of cardio-pulmonary test-retest effects in CFS - Kylie
Kumasak (Stockton, USA) - Reductions in VO2 max were similar to previous
studies, The reductions seen in VO2 max on test-retest were not due to
differences in maximal effort. Future test should include prescreening criteria
of post exertional malaise to increase the likelihood of observing metabolic
abnormalities in CFS.
Prevalence and risk factors for CFS in women in S Brazil - Luis Nacul (London,
UK) - CFS and probable CFS are not uncommon in the study. Different factors were
identified in these 2 groups, and the importance of using specific diagnostic
criteria and subgrouping of cases in research and clinical practice was
emphasized.
Trends in knowledge about CFS by Brazilian doctors - Luis Nacul (London, UK) -
the ability of doctors in Brazil to diagnose this illness remains poor, but
there is a trend towards a move from psychological to medical interpretations of
a typical patient with CFS. Education of health professionals and the population
about CFS is thus warranted.
Trends and predictive value of CFS diagnosis labels given by GPs in England -
Luis Nacul (London, UK) - Diagnostic labels vary in time and across GP
practices. This needs to be taken into account when estimating prevalence of CFS
in primary care.
A survey of the health needs and experiences of people with CFS in a NHS
specialist service in England - Sue Pemberton (Leeds, UK) - These patients have
varied needs, necessitating the importance of a multidisciplinary team. The
interpersonal skills and engagement with the patient are as important as the
intervention itself. A model is being developed to guide professionals dealing
with this illness.
An audit of the clinical outcomes of a multi-disciplinary service for CFS - Sue
Pemberton (Leeds, UK) - Minimum data set was used in this audit done at one year
from entry into the service. There was a positive overall effect, particularly
in symptom related outcomes. Functional outcomes did not show significant
change, but this may be due to patients being asked to balance out activity
levels initially.
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Workshops
Before the formal conference 4 workshops were available and well attended:
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WORKSHOP 1
Treating pain, sleep and fatigue - Charles Lapp and Lucinda Bateman
This presentation was divided into the 3 parts and gave an excellent overview of
the 3 topics and included case studies. Much discussion was generated.
PAIN
Treatment of pain was addressed non-pharmacologically and pharmacologically.
Non pharmacological approaches included:
Pacing
CBT
Counselling, hypnotherapy, biofeedback
* Restora tion of sleep
* Gentle physical conditioning (stretching, strength, aerobic)
* Massage therapy, physical therapy etc.
Pharmacological tools included:
* Anticonvulsants: Pregabalin, gabapentin, topiramate, zonisamide
* Serotonin norepinephrine reuptake inhibitors: Duloxetine, milnacipran,
venlafaxine
* Dopamine agonists under study: pramipexole, ropinirole,
* Hypnotics under study: sodium oxybate
* Opiods: (a last option) - less effective for chronic than acute pain,
severe side effects, withdrawal problems. Tramadol, methadone,
hydrocodone, oxycodone, morphine, fentanyl,subooxone
SLEEP
No specific sleep disorder is characteristic of defining CFS/ME/FM, but sleep
disorders are highly prevalent. Management of sleep seems to be the key to
improvement.
Characteristic sleep patterns:
* Non-restorative sleep
* Difficulty in initiating and maintaining sleep
* RLS/PLMS
* Nocturnal myoclonus
* Vivid dreams/nightmares
* 'Tired but wired'
* Phase shifting
* Dysania
Undiagnosed sleep disorders should be considered. Upper airways resistence
disorder (UARS), when patients do not meet criteria for obstructive sleep
disorder is common in CFS. This is accompanied by eratic breathing, drop of
oxygenation, frequent arousals and daytime fatigue + other symptoms.
Treatment may relieve some symptoms.
Treatment of sleep disorders associated with CFS
* Rule out sleep disorders
* Sleep hygiene
* CBT
Medication:
* Reduction of pain (as above)
* Dopamine agonists: ropirinole, pramipexole (RLS,PLMS)
* Simple measures: antihistamines, melatonin (watch for rage reactions at
high dose)
* Non-benzodiaepines: zolpidem, eszopiclone, zaleplon, ramelteon
* Clonazepam: (myoclonus, restlessness)
* Tizanidine: may enhance sleep and reduce self talk
* Tricyclics: amitriptyline, cyclobenzaprine
Sleep maybe disturbed by benzodiazepines, some opiates, some SSRIs and
DOPAs, Alcohol
FATIGUE
This session covered general causes of fatigue, and there seems no way to really
define or measure it. There are many different types of fatigue reported.
Fatigue may be physical, mental/cognitive or motivational. The nature and
severity of fatigue must be addressed, and this incudes: Interference with
daily activities, post-exertional effects, diurnal effects and relief or not by
rest. Mood disorders have a complex association with fatigue.
A number of fatigue measuring instruments were evaluated.
Management of Fatigue:
* Elimination of sedating medication
* Treatment of depression
* Structured schedule
* Activity/exercise plan
* Stimulants: caffeine, amantidine, methylphenindate, modafinil
* Antidepressants: Bupropion, fluoxetine
* CBT
* Self care techniques: books, CDs etc, coping skills, Campbell course
* Gupta course
* Emotional support
* Cognitive techniques (distraction, prioritization, reframing)
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WORKSHOP 2
Behavioural assessment and treatment of ME/CFS - Fred Friedberg and Leonard
Jason
This workshop focused on the understanding of ME/CFS and the management from a
behavioural point of view. Leonard Jason began with a good overview of the
history, biological, social and psychological factors in this illness, the
importance of accurate diagnosis and how to distinguish the illness from anxiety
and depression. This was followed by a presentation covering the behavioural
assessment and treatment of CFS by Fred Friedberg. Sleep management, pacing,
behavioural intervention, coping skills and the importance of emphasizing
pleasurable feelings were all covered in depth.
This was a session in which audience participation and much interaction was
involved. There was a wide range of participants from disciplines of general
medicine, psychiatry, reseach, psychology and complementary medicine.
Questions and areas of interest were posed by the audience, which were then ably
covered by the 2 leaders, with their background of wide experience, expertise
and research work. Many different techniques were discussed among the audience
looking at CBT, simple strategies to improve coping skills, the importance of
social support and relaxation approaches.
By the end of the workshop, after much interactive discussion, most people came
away feeling there were plenty of simple options to offer patients with this
perplexing illness.
I was not able to attend the following 2 other workshops, as one had to make a
choice, and I hope these will be covered by another attendee.
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WORKSHOP 3
How to apply for grants - Eleanor Hanna.
This was an informal workshop with Dr. Hanna on a speaker phone from NIH, as she
was unable to attend in person.
Nancy Klimas, Lenny Jason, Mary Ann Fletcher, and Fred Friedberg, all
experienced grantees, also answered questions about applying for grants. Dr.
Hanna, our CFS contact person at NIH, fielded questions about the NIH
application process. A networking lunch for about a dozen interested workshop
participants was arranged and well-attended.
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WORKSHOP 4
Research 101 - Suzanne Vernon
This workshop presented research approaches for how genomics could inform
clinical practice of CFS. Suzanne Vernon first provided evidence that chronic
diseases are some of the most common maladies of the 21st century and how
genomic approaches could improve diagnosis, treatment and ultimately prevent
chronic diseases. We discussed how CFS puts the aspirations of genomic medicine
to the test since CFS is a complex phenotype controlled by many genes and whose
inheritance does not follow the simple rules of Mendelian genetics. This means
that genes and gene products are context dependent and in the case of CFS,
potentially affected over time by other diseases and comorbidities, infection,
trauma, and behavior.
We than discussed how high-throughput genomics will influence medical practice.
With new biology and technology, we now can identify gene-environment causes of
CFS, we can develop early detection methods and we can determine of molecular
basis CFS taxonomy. Genomic profiling has been used to identify 'subtypes' of
CFS that are related to both pathophysiology and etiology. There are examples of
several examples of using genomics to customize therapeutic interventions in a
variety of diseases and there is recent evidence to support this approach for
CFS.
The greatest opportunity to inform medical practice as it relates to CFS will
come from applying new technologic and computational tools to well designed
human observational and clinical studies that include collection of rich and
relevant data. Suzanne emphasized the need for good study design and stressed
that new technology should be used to identify early detection markers as well
as diagnostic and subtype and treatment markers for CFS. We discussed a genomic
medicine model for CFS and how adaptation of this model will influence not only
the diagnosis and treatment of CFS, but will allow for the design of smaller,
focused clinical trials and the tailoring of treatment to the biological profile
of the patient and CFS.
Suzanne provided all participants with a USB drive that had a copy of her
presentation as well as a file on personalized medicine. The session lasted for
3 hours and seemed to hold the interest and attention of the participants.
Rosamund Vallings, MB BS
With thanks to ANZMES, who have provided funding for me to attend this
conference.
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(c) 2009 IACFS/ME