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CO-CURE Medical & Research Posts Only Digest - 11 Dec 2006 to 18 Dec 2006 (#2006-57)

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Date:    Tue, 12 Dec 2006 14:02:14 +0100
From:    Jan van Roijen <j.van.roijen@xxxxx.xx>
Subject: med: Martin Pall, PhD -a Conversation & more


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From:  "Frank Twisk" <frank.twisk@xxxxx.xx>


A conversation with MCS researcher, Martin Pall, PhD

Linda Powers

Dr. Pall is Professor of Biochemistry and Basic Medical
Sciences at Washington State University. He is currently
writing a book called Explaining "Unexplained Illnesses."

*  How did you become interested in researching this group of
illnesses--MCS, Chronic Fatigue, Fibromyalgia, Post Traumatic
Stress Disorder?

I came down with a case of chronic fatigue syndrome (CFS) in
the summer of 1997. Unlike most CFS sufferers, I had a
complete recovery, over a period of about a year and a half. I
decided to dedicate the rest of my scientific career to
understanding the mechanisms causing this group of illnesses.

*  Who is at-risk for developing MCS? Is a genetic pre-disposition
necessary? Is early exposure to toxic chemicals in pesticides
and solvents critical?

There is evidence for an important genetic role in determining
one's tendency to get each of these related illnesses. For MCS,
the evidence so far implicates genes involved in chemical
metabolism, as well as a gene that helps determine the activity
of the NMDA receptors in the brain, receptors that I believe are
central to the mechanism of MCS. I would expect that a number
of vitamins, magnesium, selenium and a variety of antioxidants
may well have a role in preventing MCS. I think that in some
individuals, early life stressors may well make them more
susceptible to MCS, but in others this will not be a factor.

There are multiple short term stressors that are implicated in this
whole group of illnesses, including pesticides and volatile
organic solvents, particularly in MCS, infection, particularly in
CFS, both infection and physical trauma (particularly head and
neck trauma) in fibromyalgia and severe psychological stress in
posttraumatic stress disorder. All of these stressors can
produce increases in nitric oxide and I have proposed that they
may trigger a common biochemical/physiological response that
is responsible for these illnesses.

*  Why is there so much variation of symptoms from one individual
to another within this group of illnesses?

One can explain many of the symptoms as being produced by
impact on different regions of the brain, as well as different parts
of the rest of the body. For example, some people with MCS
have lower lung, asthma-like sensitivities, sometimes
abbreviated RADS and some do not--and those who have this
have tissue impact in the lower lungs. So a specific tissue when
impacted by this biochemistry produces a specific response.

*  Describe the focus of your work with these illnesses and the
grants/funding sought

Most of my work, over the past seven years or so has been
trying to master large areas of the scientific literature to develop
the best possible theory of the etiologic (causal) mechanism of
these illnesses. This does not require any outside funding and
fortunately, my university has been satisfied to have me do this
and has not "bugged" me to seek more grant funding.

This is the type of work that nobody does. The reason for that is
two-fold. Firstly, you cannot get research funding to do this type
of work. Secondly it is damn hard work and most people do not
have either the breadth of background or the interest in pursuing
it. This is despite the fact that some very prominent scientists
have commented that this is just the type of work that we most
need in the biomedical area. We are inundated by experimental
results in many areas of biomedical science (not on MCS,
however) but have little time to integrate these results into
understandable conceptual frameworks.

I did have a small grant on CFS, which allowed me to publish
two experimental papers providing support for my theory. I also
tried to get funding for two similar trials, one for CFS treatment
and second for fibromyalgia treatment. The two foundations that I
went to for funding both had the same response. They felt that if
the trial worked, we would not know why it worked because there
were so many components involved in the trial, and so the
foundations were not interested in it. I guess I'd like them to try to
convince the sufferers that an effective treatment would not be
worth supporting even if one cannot determine exactly how it

*  You've developed a treatment protocol that has a nutritional
focus. Describe it.

First, let me remind you that I am a PhD, not an MD, so nothing I
write should be interpreted as a recommendation or as medical
advice. I have been interested in therapy issues ever since I got
involved with this group of illnesses. I think that any etiologic
(causal) theory has got to show its value through its ability to
suggest effective therapeutic approaches.

Dr. Grace Ziem asked me to come up with a treatment protocol.
She had my protocol compounded by a compounding pharmacy
and is trying it on her MCS patients. She reports it seems to be
substantially more effective than her previous treatment

The approach that I have taken is based on the use of nutritional
supplements rather than conventional pharmaceuticals, and this
approach was taken for two reasons. One is that there are not a
lot of conventional pharmaceuticals that are attractive
candidates for therapy. Secondly, Dr. Ziem wanted us to use as
natural an approach as possible, one that might give the injured
body (including brain, of course) an opportunity to heal itself.

Most of the nutritional supplements we are using are already
being sold to people with these illnesses, so individually they are
of limited effectiveness. If any one of them was a magic bullet,
we would know about it. The goal is to come up with a series of
over a dozen such compounds expected to act synergistically
with each other to lower the biochemistry and physiology that
maintains these illnesses.

We have used a large number of antioxidants (over a dozen of
these alone), several minerals and some odd compounds, such
as the amino acid betaine.

Among the specific goals is to try to improve energy metabolism
and lower the activity of the NMDA receptors in the brain and
other parts of the body, as well as to lower the synthesis of and
effects of nitric oxide and peroxynitrite.

*  Describe the human clinical research you'd like to do, and
explain why placebo-controlled trials are important.

What is known as a double-blind, placebo controlled trial is
considered to be the "gold standard" of trials and such an
approach is needed to convince people of possible
effectiveness. The idea is that if an individual in the trial does not
know whether he/she is receiving the active material or a
placebo, that comparing a substantial number of individuals in
each of the two groups will allow one to determine whether the
treatment is effective and to quantify how effective it may be. We
may end up with two types of tablets, a gel cap and an inhalant
and if this is the final approach, we will need four different
placebos, one for each.

*  How much funding is needed for this research?

Dr. Ziem estimates that it will take about $50,000 for the trial. I
will be donating my time to it. This is for a trial containing a group
of 30 for treatment and 30 for the placebo.

*  If the funding did come through, how would participants in the
trials be chosen?

Dr. Ziem has a large backlog of patients. If that is insufficient, we
can contact support groups near her (she is located in rural
Maryland). She will have to examine potential participants to
determine if they fit the appropriate case definition.

Each participant will have a small blood sample taken before
starting the trial and two times after the initiation of the trial so
that I can measure some biochemical parameters that may be a
measure of treatment response. Response to the trial will also
be measured through the use of a previously validated
questionnaire. After the placebo-controlled part of the trial is
completed, the placebo group will be offered the opportunity to
try the active supplements, so everyone will have the opportunity
to see how well the therapy works in their case.

*  Can interested individuals donate to your research?

They can make a tax deductible contribution through the WSU
foundation by including a note with a check indicating it is to
support the Martin Pall research fund, sent to:

Carol Sayles-Rydbom

Assistant Director of Development
College of Sciences
Morrill Hall 144B
P.O. Box 643520
Pullman, Washington 99164-3520 USA

COPYRIGHT 2005 The Townsend Letter Group
COPYRIGHT 2005 Gale Group



Martin L. Pall, PhD, BA
Professor, Biochemistry and Basic Medical Sciences,
Washington State University, Pullman

complete contents for Explaining "Unexplained Illnesses" Start
treating the causes of these baffling diseases, instead of the

•   Acknowledgments
•   Chapter 1. The NO/ONOO- Cycle and the Cause of Chronic
      Fatigue Syndrome, Multiple Chemical Sensitivity,
      Fibromyalgia, and Post-traumatic Stress Disorder
•   Chapter 2. Important Components and Their Properties
•   Chapter 3. Generation of Symptoms and Signs of Multisystem
•   Chapter 4. The Local versus Systemic Nature of the
      NO/ONOO- Cycle Mechanism and Its Implications for
      Nomenclature and Treatment
•   Chapter 5. Chronic Fatigue Syndrome
•   Chapter 6. Agents That Lower Nitric Oxide Levels Are Useful
      in the Treatment of Multisystem Illnesses
•   Chapter 7. Multiple Chemical Sensitivity
•   Chapter 8. Fibromyalgia
•   Chapter 9. Post-traumatic Stress Disorder
•   Chapter 10. Gulf War Syndrome: A Combination of All Four
•   Chapter 11. The Toll of Multisystem Illnesses
•   Chapter 12. Overall Evidence: What Else Is Needed?
•   Chapter 13. What About Those Who Say It Is All in Your
•   Chapter 14. A Major New Paradigm of Human Disease?
•   Chapter 15. Therapy
•   Chapter 16. Conclusions
•   References
•   Index


Martin L. Pall, Ph.D.
Professor of Biochemistry and Basic Medical Sciences
Washington State University
Pullman, WA 99164-4234 USA

Multiple Chemical Sensitivity:
Towards the End of Controversy

see this article in pdf format at:


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Date:    Tue, 12 Dec 2006 19:04:41 +0000
From:    Maggie Wallace <zen38947@xxx.xx.xx>
Subject: RES: 'What is it like to have ME?': The discursive construction of ME in computer-mediated communication and face-to-face interaction

'What is it like to have ME?': The discursive construction of ME in
computer-mediated communication and face-to-face interaction
     Jennifer Guise, Sue Widdicombe, and Andy McKinlay
     Health (London) . 2007;  11(1): p. 87-108

Jennifer Guise
University of Abertay, Dundee, UK

Sue Widdicombe
University of Edinburgh, UK

Andy McKinlay
University of Edinburgh, UK

ME (Myalgic Encephalomyelitis) or CFS (chronic fatigue syndrome) is a
debilitating illness for which no cause or medical tests have been
identified. Debates over its nature have generated interest from
qualitative researchers. However, participants are difficult to recruit
because of the nature of their condition. Therefore, this study explores
the utility of the internet as a means of eliciting accounts. We analyse
data from focus groups and the internet in order to ascertain the extent
to which previous research findings apply to the internet domain.
Interviews were conducted among 49 members of internet groups (38
chatline, 11 personal) and 7 members of two face-to-face support groups.
Discourse analysis of descriptions and accounts of ME or CFS revealed
similar devices and interactional concerns in both internet and
face-to-face communication. Participants constructed their condition as
serious, enigmatic and not psychological. These functioned to deflect
problematic assumptions about ME or CFS and to manage their
accountability for the illness and its effects.

Key Words: computer-mediated communication (CMC) • discursive psychology
• illness descriptions • ME/CFS

Copyright © 2007 by SAGE Publications

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Date:    Wed, 13 Dec 2006 16:15:55 -0500
From:    Fred Springfield <fredspringfield@xxxxx.xxx>
Subject: RES: Chronic fatigue syndrome is accompanied by an IgM-related  immune response directed against neopitopes formed by oxidative or  nitrosative damage to lipids and proteins

Chronic fatigue syndrome is accompanied by an IgM-related immune response
directed against neopitopes formed by oxidative or nitrosative damage to
lipids and proteins.

Journal: Neuro Endocrinol Lett. 2006 Oct 12;27(5) [Epub ahead of print]

Authors: Maes M, Mihaylova I, Leunis JC.

Affiliation: MCare4U Outpatient Clinics, Belgium.

NLM Citation: PMID: 17159817

There is now some evidence that chronic fatigue syndrome (CFS) is
accompanied by signs of oxidative stress and by a decreased antioxidant
status. The aim of the present study was to examine whether CFS is
accompanied by an immune response to neoepitopes of a variety of modified
lipids and proteins indicating damage caused by oxidative and nitrosative

Toward this end we examined serum antibodies to fatty acids (oleic,
palmitic and myristic acid), by-products of lipid peroxidation, i.e.
azelaic acid and malondialdehyde (MDA), acetylcholine,
S-farnesyl-L-cysteine, and N-oxide modified amino-acids in 14 patients with
CFS, 14 subjects with partial CFS and 11 normal controls.

We found that the prevalences and mean values for the serum IgM levels
directed against oleic, palmitic and myristic acid, MDA, azelaic acid,
S-farnesyl-L-cysteine, and the N-oxide derivates, nitro-tyrosine,
nitro-phenylalanine, nitro-arginine, nitro-tryptophan, and nitro-cysteinyl
were significantly greater in CFS patients than in normal controls, whereas
patients with partial CFS took up an intermediate position. There were
significant and positive correlations between the serum IgM levels directed
against fatty acids, MDA and azelaic acid and the above N-oxide-derivates
and the severity of illness (as measured by the FibroFatigue scale) and
symptoms, such as aches and pain, muscular tension and fatigue.

The results show that CFS is characterized by an IgM-related immune
response directed against disrupted lipid membrane components, by-products
of lipid peroxidation, S-farnesyl-L-cysteine, and NO-modified amino-acids,
which are normally not detected by the immune system but due to oxidative
and nitrosative damage have become immunogenic.

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Date:    Wed, 13 Dec 2006 20:35:02 +0100
From:    Jan van Roijen <j.van.roijen@xxxxx.xx>
Subject: res: Journal of Chronic Fatigue Syndrome


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Journal of Chronic Fatigue Syndrome

(ISSN: 1057-3321)
Volume: 14 Issue: 1
Cover Date: 2007





Elke Van Hoof, Kenny De Meirleir, Neil McGregor



Service Utilization, Barriers to Service Access, and Coping
in Adults with Chronic Fatigue Syndrome

Rosemary A. Underhill, Ruth O'Gorman


In a sample of 47 adults with CFS, we aimed to describe
patterns of service utilization, identify barriers to service access,
and explore the relationship between service utilization and
coping styles.


A questionnaire assessing service utilization frequency and
barriers to service access was administered to a sample of 47
individuals with CFS. The Illness Management Questionnaire
was used to assess relationships between coping styles and
service utilization.


A Cochran's Q test of homogeneity revealed that medical and
CFS self-help services were most frequently used and
rehabilitation services were least frequently used. In terms of
service accessibility, 80.9% of participants reported at least one
barrier. Lack of financial (including insurance) resources and
lack of knowledge about service availability were the two most
frequently reported. In terms of coping styles, symptom focusing
was positively associated with use of CFS self-help services
and with use of in-home services and social service agencies.
Information seeking was negatively associated with use of
in-home and social service agencies and with use of mental
health services.


These findings can be used by health-care professionals and
advocacy-based organizations to develop programs focused on
mass education campaigns for health-care providers, increase
knowledge of service availability among individuals with CFS,
and to understand relationships between certain types of coping
styles and service preferences.


Chronic fatigue syndrome, service utilization, access, coping


The Feasibility of Reviewing Chronic Fatigue Syndrome
Clients at a Distance: A Teleconference Pilot Study

Gwyneth C. Weatherburn, Amelia Goldsmith Lister, Leslie J.


There continues to be a shortage of clinical staff specialising in
the treatment of CFS (ME). In order to access specialist care,
many clients have to undertake long or difficult journeys that may
exacerbate their symptoms. This exploratory study aimed to
reduce these travel problems by the introduction of a
Teleconference Review Clinic (TRC).


A TRC was booked for six CFS clients who would normally have
face-to-face review by specialists 44 miles away.
Questionnaires were used to elicit the views of both clients
being reviewed and clinicians undertaking the review at a
distance. Differences in distances travelled by clients for
conventional face to face and telemedicine review were
calculated and comments about the teleconference made by
clients and therapists were noted.


There was general satisfaction with the quality of the pictures
and sound during the reviews. Clinicians were able to obtain all
the information required to undertake all clinical assessments.
For two clients the clinical management was changed after the
consultation and for one client an issue was identified that
required referral to another clinician. For clients who lived nearer
to the teleconference hospital, the journey saved ranged
between 1 mile and 85.8 miles, the mean being 64.2 miles.


This pilot study does suggest that telemedicine in this area of
medicine is logistically viable and effective, and indicates that a
larger study is needed.

Keywords: Chronic fatigue syndrome, teleconference, review


Changes in Functional Status in Chronic Fatigue
Syndrome Over a Decade: Do Age and Gender Matter?

Rosalind M. Matthews, Anthony L. Komaroff


Patients with chronic fatigue syndrome (CFS) have substantial
deficits in functional capacity, but the course of these deficits
over time has not often been studied. This study measured
functional capacity on three occasions over a decade, in
patients with CFS.


The study was a longitudinal cohort study, and employed the
Medical Outcomes Study Short-Form 36 (SF-36) instrument to
assess physical and mental/ emotional functional status.


Physical function, as reflected in several different scales,
improved modestly but significantly over time, particularly for
patients aged 18-60 years and for women. Mental/emotional
function was not substantially impaired at the outset of the study,
and did not change over time.


This study found that physical function tended to improve for
many patients over time, despite the fact that theywere aging.
Physical function did not deteriorate with time.


CFS, functional status, SF-36, subgroups, over time


Physiological Responses to Arm and Leg Exercise in
Women Patients with Chronic Fatigue Syndrome

Casimiro Javierre, José Alegre, José Luis Ventura, Ana
García-Quintana, Ramon Segura MD, PhD, Andrea Suarez,
Alberto Morales, Agusti Comella, Kenny De Meirleir

Patients affected by chronic fatigue syndrome (CFS)
characteristically show easy and unexplained fatigue after
minimal exertion that does not resolve with rest and is
associated with specific symptoms lasting for more than six

Cardiopulmonary exercise testing is a valid procedure for
determining functional capacity in patients with CFS. We
compare cardioventilatory adaptation to exercise between a
group of eighty-five consecutive women patients affected by
CFS and a group of fifteen healthy women extremely sedentary
individuals, with the use of maximum incremental exercise
testing on a cycle ergometer and arm ergometer, assessing
possible differences.

The majority of values achieved at peak exhaustive exercise
were significantly lower in CFS patients than controls, including
the percentage of maximum oxygen uptake in arm physical test
(37.4 ± 10.0% in CFS vs. 58.9 ± 15.8% in controls) and leg
physical test (53.4 ± 15.0% in CFS patients vs. 76.2 ± 18.0% in

In conclusion, the CFS group show a lower work capacity in arm
or leg exercise that would not be justified exclusively by their
personal characteristics or deconditioning.


Chronic Fatigue Syndrome, maximal oxygen uptake, lactate


Personality Profile of Patients with Chronic Fatigue

Olivier Le Bon, Bernard Cappeliez, Daniel Neu, Luc Stulens,
Guy Hoffmann, Michel Hansenne, Luc Lambrecht, Marc
Ansseau, Paul Linkowski

Personality may play a role in the predisposition, the
precipitation and/or the maintenance of the CFS.

Thirty-six consecutively examined female patients hospitalised
for a sleep workup, filledout a Temperament and Character
Inventory (TCI) questionnaire. A MANOVA compared the
patients with a control group of females matched for age.
Significant scores were obtained for dimensions such as Harm
Avoidance, Reward Dependence, and Self-Directedness.

However, the only subdimension of Harm Avoidance that proved
significantly higher in CFS than in controls was "Fatigability,"
which is likely to overlap with the core CFS symptom.

All in all, the personality structure does not appear to play a
major role in the CFS.


Lipids, antioxidants, therapy, dietary supplement, fatigue,
mitochondria, chronic fatigue syndrome


Body Mass Index and Fatigue Severity in Chronic Fatigue

Ellen A. Schur, Carolyn Noonan, Wayne R. Smith, Jack
Goldberg, Dedra Buchwald


It is uncertain how much fatigue is related to weight in patients
with chronic fatigue syndrome (CFS). Objective: To assess the
association of body mass index (BMI) and fatigue in CFS


Consecutive patients seen in a referral-based specialty clinic
were eligible if they met CFS criteria and had completed
required measures. Fatigue measures were the vitality subscale
of the Medical Outcomes Short-Form 36 and the global fatigue
index from the Multidimensional Assessment of Fatigue.


In women, there was no relationship between BMI and vitality
subscale or global fatigue index scores (P = 0.99 and P = 0.44).
For men, vitality subscale scores significantly decreased as BMI
increased (P = 0.02).


In CFS patients, the prevalence of obesity was low despite risk
factors for weight gain. Fatigue severity and BMI were unrelated
in women with CFS, but this relationship may differ for men.


Chronic Fatigue Syndrome, fibromyalgia, fatigue, weight

Table of Contents/Front Matter
DOI: 10.1300

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Date:    Wed, 13 Dec 2006 20:21:54 +0000
From:    Mary Schweitzer <marymsch@xxxxx.xxx>
Subject: RES,MED: Current state of information on HHV-6 viruses

A great deal of confusion seems to surround the HHV-6 viruses, Variant A and Variant B. 
This information from ongoing studies may clear some of it up.

1.  HHV-6B causes exanthema subitum and not measles.

2.  The distribution of HHV-6 is high in the general population (over 95 
percent), but in most cases that is HHV-6B, not HHV-6A.  HHV-6B is 
contracted in childhood, usually between 1-3 years of age.  In contrast, 
HHV-6A is rare in childhood.  In the adult population, it is not clear 
how many cases exist of HHV-6A; studies have ranged from rare to as high 
as one-third.

3.  Active HHV-6A is found more often than HHV-6B in in patients with 
CFS-Fukuda.  It has also been found in the spinal fluid of M.S. patients; 
Alvarez La Fuente found it most often in M.S. patients who are in relapse.  
Again, studies as to the actual frequency of HHV-6A in MS and CFS are 
conflicting because of the difficulties of diagnosing active HHV-6A 
depending on the method used.  Using reverse transcriptase and serum PCR, 
some researchers have found few cases of HHV-6A, while others have found 
the rate to be as high as 50 percent.  Using the early antigen assay, Dr. 
Dharam Ablashi found even more cases.  More research is needed (and 
probably a better way to nail down the patient population) to achieve 
consistent prevalence rates.

4.  Researcher Carolyn Hall has demonstrated that HHV-6A can be detected 
in spinal fluid long after it is no longer detectable in blood samples.

5.  One of the problems in diagnosing HHV-6A is that unlike most viruses, 
it does not go through a stage where it is released into blood serum.  
HHV-6A apparently releases a substance that causes the cells to clump 
together, allowing it to spread by moving through the cell walls.  Hence 
the best way to detect HHV-6A is to look at antibodies to the viral proteins, 
not PCR tests looking for the actual viral copies themselves.  Needless to 
say, this is easier said than done.  Researchers are working on more reliable 
methods of detection for HHV-6A.

In sum, HHV-6, Variant A, is very different from HHV-6, Variant B - so 
different that Dr. Gallo (formerly of NIH) has called for the renaming of 
HHV-6, Variant B, to resolve confusion caused by clumping the two diseases 

For patients with M.E. or CFS, HHV-6A is the pathogen that has been linked to 
severity of symptoms, not HHV-6B.  General studies of HHV-6 (not distinguishing 
which type) are not particularly helpful.  It is intriguing that HHV-6A in the 
spinal fluid has also been linked to progressive or relapsing M.S.

For more information on HHV-6A or HHV-6B, I would recommend the HHV-6 
Foundation's website:

Mary Schweitzer

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Date:    Wed, 13 Dec 2006 13:50:06 -0800
From:    "Neil Abbot <Neil.Abbot@xxxxx.xx.xx> via Co-Cure Moderators" 
Subject: RES, MED: Essay on the ME/CFS NICE draft Guideline 2006

ME/CFS NICE Guideline

"Poor naked wretches, whereso'er you are,

That bide the pelting of this pitiless storm,

How shall your houseless heads and unfed sides,

Your loop'd and window'd raggedness, defend you

>From seasons such as these?...."

King Lear Act 3, Scene 4

Read ME Research UK's comments on the NICE guideline:

pdf format 163 KB

MS Word format 111 KB

The publication of the ME/CFS Guideline Draft For Consultation by National
Institute for Clinical Excellence (NICE) has energised patient support groups
and ME/CFS charities like nothing in recent memory. Their response has been
overwhelmingly hostile, and those which are Registered Stakeholders have
registered their protest by supplying detailed critiques of the document (we
have added our own voice to the clamour). Nothing new in that, you might say:
as Polly Toynbee's defence of NICE over its refusal to approve the cancer drug
Velcade pointed out, "Patient groups understandably want everything for their

The role of NICE and the controversies surrounding its decisions are well
known - see the article, "Debate - National Institute for Clinical
Excellence"; the Institute expects to come under fire, and probably treats its
wounds as badges of honour. Yet, there is something unusual - unique, in
fact - about the current uproar. Today, almost certainly for the first time
since it started work in April 1999, the Institute is faced with a united body
of patient-based opinion which does NOT want the guideline it has produced,
certainly not in its current form, and if push comes to shove would rather
have a non-guideline on ME/CFS (the first Clinical Guidance with a minus
number) than the one on offer. Restlessness in the natives is one thing, but a
full-scale rebellion by deeply ungrateful wretches - poor mostly, and
certainly naked of the kind of randomised clinical trial evidence recognised
by the Institute - is quite another. What's it all about?

Well, it's simple really. The draft produced by the Guideline Development
Group (GDG) is unfit for purpose, i.e., for informing the diagnosis and
management of ME/CFS patients, primarily because it flags up as treatments for
the illness psychosocial management and coping strategies that at best have an
adjunctive role to play. Patient-based charities and self-help groups (and
there are around 20,000 members of these in the UK alone) recognise this, and
can foresee that the major recommendations of the guideline will not,
unfortunately, solve the problem on the ground.

Essentially, the Institute has not got to grips with core issues surrounding
ME/CFS. These are explored in depth in our submission, but can be briefly
stated. The first, and most central, is the problem of diagnosis: whichever
definition is used, ME/CFS is widely recognised to be an impossibly wide
diagnostic marquis and to contain different patient groups; the formation of
clinical guidance inevitable raises the question of guidance for what and for
whom. The second problem concerns the randomised controlled trial (RCT)
evidence upon which NICE puts a premium, and the devaluation of evidence from
scientific studies and surveys. This is a continuing area of controversy for
the Institute, but it has a particular poignancy in the case of ME/CFS since
the evidence-base is skewed towards a small group of mildly positive RCTs on
psychosocial strategies; thus, instead of finding the "best" evidence garnered
from the work of a range of biomedical and biopsychosocial scientists working
on a level playing field, what is found is quite modest evidence in a
forgotten field put there by proponents of psychosocial strategies. Multiple
sclerosis with the formal evidence-base that currently exists for ME/CFS would
be no less a physical illness, and the non-specific management and coping
strategies would be no more specifically effective for the underlying disease,
yet these adjunctive strategies have an unduly prominent role in the Institute's
draft guideline... This can be nicely illustrated by a Table in which the
ME/CFS NICE Guideline Draft is placed side by side with other Clinical
Guidelines in the NICE pantheon, representing 19 different clinical

The full Table "NICE Clinical Guidance recommendations on the use of cognitive
behavioural therapy (CBT) for 19 different clinical conditions (excludes
clinical guidance on interventional procedures, technology appraisals etc.)"
can be read here


The Table shows that cognitive behavioural therapy (CBT) is postulated to be a
specific treatment for Anxiety, Bipolar disorder, Depression, Eating
disorders, Obsessive-compulsive disorder, and Schizophrenia; this is an
unsurprising finding since a psychological therapy surely has some utility for
some psychological disorders. It also shows that in none of the remaining 12
conditions, all primarily physical in origin, is CBT proposed as a treatment
for the illness or disease; where CBT is mentioned, its role is clearly
constrained, for example to co-morbid emotional disorders, for rehabilitation
programmes or psychosocial support. Only in the case of the physical illness
ME/CFS is CBT proposed as a specific treatment; moreover, only in the case of
ME/CFS is the basis of CBT - "relationship between thoughts, feelings,
behaviours", "discussion of the patient's attitudes and expectations" etc. -
described in the NICE guideline outside of the standard glossary. This is a
strange development, even stranger given that the Institute's Full Draft
Guideline on ME/CFS, page 203, says: ...The GDG did not regard CBT or other
behavioural treatments as curative or directed at the underlying disease
process, which remains unknown. Rather, such treatments can help some patients
cope with the condition and consequently experience a improved quality of
life. Indeed, organisations representing people with the physical illness
ME/CFS are marvelling why the Institute has delivered a draft guideline that
is unique even in its own pantheon, as well as being inappropriate for their
needs. While everyone recognises that psychiatry has been desirous of a
greater role in physical illness for over a decade - a thrust nicely expressed
by Jeremy Couper (Australian and New Zealand Journal of Psychiatry 2000;
34:762-769), "...chronic fatigue syndrome can be seen as a potential Trojan
horse for psychiatry, enabling psychiatry to perform a broader role in medical
research and a more truly integrated role in the health system" - it had been
assumed that the Institute valued it's independence too much to be fooled by
smoke and mirrors.

The unfitness of this guideline draft is a terrible blow to people with ME/CFS
who already exist in a pelting storm of disbelief and sometimes professional
distain. Clinical guidelines are routinely circulated to all NHS primary care
trusts, strategic health authorities, GPs and practice nurses in England and
Wales, and representative bodies for health services, professional
organisations and statutory bodies, so there could be severe consequences for
patients - particularly negative effects in the form of the denial of other
treatment options - if the draft guideline was published in its present form.
Rather than incorporate an inadequate and skewed evidence-base into
established guidelines which feed into clinical care and government policy,
the Institute should withdraw the draft pending a complete overhaul to reflect
the simple truth: that specific, rigorous, evidence-based recommendations for
treatment of people falling under the diagnostic marquis ME/CFS probably
cannot be made at present, but that (as in other physical illnesses)
psychosocial coping and management strategies, such as CBT, may be an option
for symptom management or comorbid anxiety or depression.

ME Research UK's full comments on the draft NICE guideline can be read here


Dr Neil C. Abbot
Director of Operations
ME Research UK
The Gateway
North Methven St
Perth PH1 5PP, UK

ME Research UK (formerly MERGE) is a national UK charity funding biomedical
research into Myalgic Encephalomyelitis (also known as ME/CFS) and related
illnesses. Our principal aim is to commission and fund high-quality scientific
(biomedical) investigation into the causes, consequences and treatment of ME,
but we also have a mission to "Energise ME Research"


[Return to top]


Date:    Wed, 13 Dec 2006 18:04:10 -0500
From:    "Bernice A. Melsky" <bernicemelsky@xxxxx.xxx>
Subject: RES: Metabolic syndrome in women with chronic pain

Metabolic syndrome in women with chronic pain.

Metabolism. 2007 Jan;56(1):87-93.

Loevinger BL, Muller D, Alonso C, Coe CL.

Center for Women's Health Research, University of Wisconsin School of
Medicine and Public Health, Madison, WI 53715, USA.

PMID: 17161230

Fibromyalgia is a prevalent syndrome characterized by chronic pain,
fatigue, and insomnia. Patients with fibromyalgia commonly have an elevated
body mass index and are physically inactive, 2 major risk factors for
metabolic syndrome. Yet little is known about the relationship between
chronic pain conditions and metabolic disturbances. Our study evaluated the
risk for, and neuroendocrine correlates of, metabolic syndrome in this
patient population.

Women with fibromyalgia (n = 109) were compared with control healthy women
(n = 46), all recruited from the community. Metabolic syndrome was
identified by using criteria from the Adult Treatment Panel III with
glycosylated hemoglobin concentrations substituted for serum glucose.
Catecholamine and cortisol levels were determined from 12-hour overnight
urine collections.

Women with fibromyalgia were 5.56 times more likely than healthy controls
to have metabolic syndrome (95% confidence interval, 1.25-24.74).
Fibromyalgia was associated with larger waist circumference (P = .04),
higher glycosylated hemoglobin (P = .01) and serum triglyceride (P < .001)
levels, and higher systolic (P = .003) and diastolic (P = .002) blood
pressure. Total and low-density lipoprotein cholesterol were also
significantly higher in women with fibromyalgia (P = .001 and .02,
respectively), although high-density lipoprotein cholesterol was in the
reference range. These associations were not accounted for by age or body
mass index. Meeting criteria for more metabolic syndrome components was
related to higher urinary norepinephrine (NE)/epinephrine and NE/cortisol
ratios (P < .001 and P = .009, respectively).

Women with chronic pain from fibromyalgia are at an increased risk for
metabolic syndrome, which may be associated with relatively elevated NE
levels in conjunction with relatively reduced epinephrine and cortisol

[Return to top]


Date:    Thu, 14 Dec 2006 13:08:19 -0500
From:    "Bernice A. Melsky" <bernicemelsky@xxxxx.xxx>
Subject: RES: Pharmacologic treatment of fibromyalgia

Pharmacologic treatment of fibromyalgia.

Curr Psychiatry Rep. 2006 Dec;8(6):464-9.

Baker K, Barkhuizen A.

Arthritis & Rheumatic Diseases, Oregon Health & Science University,
Portland, OR 97239, USA. bakerk@xxxx.xxx

PMID: 17162828

Fibromyalgia is a syndrome of widespread pain, non-restorative sleep,
disturbed mood, and fatigue. Optimal treatment involves a multidisciplinary
approach with a team of health care providers using pharmacologic and
nonpharmacologic treatment. Because of the heterogeneity of the illness,
management should be individualized for the patient.

Pharmacologic treatment should address issues of pain control, sleep
disturbance, fatigue, and any underlying coexisting mood disorder.
Nonpharmacologic treatment should include patient education, a regular
exercise and stretching program, and cognitive behavioral therapy. All of
these are essential to improving functional capacity and quality of life.

This review provides general guidelines in initiating a successful
pharmacologic treatment program for patients with fibromyalgia.

[Return to top]


Date:    Fri, 15 Dec 2006 02:49:32 +0100
From:    Jan van Roijen <j.van.roijen@xxxxx.xx>
Subject: not,res: Poster Presentations IACFS 2007


Send an Email for free membership
       >>>> Help ME Circle  <<<<
 >>>>   15 December 2006    <<<<
Editorship : j.van.roijen@xxxxx.xx
Outgoing mail scanned by Norton AV

From:  "Frank Twisk" <frank.twisk@xxxxx.xx>


The 8th International IACFS Professional Conference.
Friday, Jan 12- Sunday, Jan 14, 2007- Fort Lauderdale

Poster Presentations

Behavioral Section

Computer-Assisted Cognitive Function Assessment in
Fibromyalgia, Chronic Fatigue Syndrome and Multiple
Chemical Sensitivity Patients

Cusco-Segarra AM,Garcia-Fructuoso FJ,Lopez_Crespi F,
Poca-Dias, V, Garcia-Blanco S, Santos, C

A Qualitative Analysis of the Experience and Influence of
Low Intensive Interval Training in Women with Chronic
Fatigue Syndrome

Lennartsson Claudia , Tyni-Lenné Raija , Lindh Gudrun

A Chronic Fatigue Syndrome Health Behavior and
Education Train-the-Trainer Program for Primary Care

Dana Jones Benet , Ph.D., M.P.H., K. Kimberly McCleary,B.A.,
Teresa A. Lupton , R.N., B.S.S., Katherine M. Faryna , B.A.,
Kevin Hynes, Ph.D., and William C. Reeves, M.D.

Using Comprehensive Clinical Case Management to
Improve Health-Care Utilization and Coping in Patients
and Families Affected by CFS/FM

Patricia Fennell, MSW, LCSW-R

Depression and CFS: Similarities and Differences From
Psychological Evaluation

Tokuzo Matsui M.D., Ph.D., Nobuo Kiriike M.D., Ph.D., Sanae
Fukuda Ph.D. , Hirohiko Kuratsune M.D., Ph.D., Seiki Tajima
M.D., Ph.D., Yoshiki Nishizawa M.D., Ph.D., Sasuyoshi
Watanabe M.D., Ph.D.

Family Experience of Parental Chronic Fatigue Syndrome:
A Pilot Study

Julie G. Donalek, R.N.,D.N.Sc.,A.P.R.N.,B.C.

The Impact of an Early Educational Intervention Program
on Future Physicians Perceptions and Attitudes
Regarding Chronic Fatigue Syndrome (CFS)

Lu, T.V. & Jason, L.A.

Stagnation in CFS Publishing? Comparisons with
Fibromyalgia and Fatigue: 1995-2004

Fred Friedberg, PhD, Brett Schmeizer, BA & Stephanie Sohl,

A Standardized Test for Postexertional Malaise in CFS

Ruud C.W. Vermeulen MD PhD, Ruud M. Kurk MD and Hans R.
Scholte PhD

A Proposed Clinical Protocol for Occupational Therapy in
the Treatment of CFS/FM Utilizing the Model of Human
Occupation and Fennell Four-Phase Treatment

Jennifer Burke, OTR/L, Patricia Fennell, MSW, LCSW-R

Intravenous Saline Administration Improves Physical

Travis L. Stiles, Staci R. Stevens, Christopher R. Snell, Lucinda
Bateman, and J. Mark VanNess.

Treating People with CFS/FM Who Have Been Victims of
Disaster or Trauma

Patricia Fennell, MSW, LCSW-R, Margaret Butkereit, MS,

The Buddy Program: Support for Individuals with Chronic
Fatigue Syndrome

Till, L.D., Jason, L.A., Porter, N., Andrews, M. F.

Evaluating the CDC Criteria for an Empirical CFS Case

Najar, N.S., BA., Porter, N. Ph.D., & Jason, L.A., Ph.D.


Brain Function Section

Metabolic and Immune Responses to Exercise Testing

J. Mark VanNess, Christopher R Snell, Staci R Stevens, Lucinda
Bateman and Travis Stiles

Psychomotor Slowing in Chronic Fatigue Syndrome

Greta Moorkens, Filip Van Den Eede, Bernard G.C. Sabbe

Study of Biological Markers, Ergometric Parameters and
Cognitive Function in a Cohort of Patients with Chronic
Fatigue Syndrome

Alegre-Martin J, Soriano Sanchez T, Javierre C, Garcia
Quintana J, Ruiz E, Fernández de Sevilla T, De Meirleir K,
Garcia Quintana AM.

Associations Between Biological Markers and Ergometric
Parameters and Cognitive Function in Patients with
Chronic Fatigue Syndrome

Alegre-Martin J, Soriano Sanchez T, Javierre C, Garcia
Quintana J, Ruiz E, Fernández de Sevilla T, De Meirleir K,
Garcia Quintana AM

Evidence of Increased Frequency of Patent Foramen
Ovale (PFO) in the Chronic Fatigue Syndrome with
Enriched Oxygen Modulation of the PFO

Cheney, PR and Lucki, NC


Clinical Trials Section

Effect of Modafinil on Daytime Hypersomnia in Patients
with Chronic Fatigue Syndrome

Garcia-Fructuoso F, Fernández-Solá J, Poca-Dias V,
Fernández-Huerta JM, Fernandez-Sola A

Lipid Replacement and Antioxidant Therapy for Restoring
Mitochondrial Function in Fatiguing Illnesses and Chronic
Fatigue Syndrome

Garth L. Nicolson, Ph.D., Rita Ellithorpe, M.D. and Robert
Settineri, M.S.

A Randomized Double-blind, Placebo-Controlled
Cross-Over Study with Methylphenidate in Sixty Patients
with Chronic Fatigue Syndrome

Daniel Blockmans, Philippe Persoons, Boudewijn Van
Houdenhove, Herman Bobbaers

Comprehensive Treatments with IVIG For CFS

Tae H. Park, M.D.

A Proposed Protocol for the Dental Treatment of Patients
With CFS

Wanda I. SaldaZa, DDS, Patricia Fennell, MSW, LCSW-R

Treatment of Elevated C4a in Patients with CFS Using Low
Doses of Erythropoietin Safely Reduces Symptoms and
Lowers C4a: A Prospective Clinical Trial

Ritchie C. Shoemaker, MD, Margaret S. Maizel

Treatment of CFS Patients With Low Levels of Vasoactive
Intestinal Polypeptide (VIP) and Shortness of Breath with
Tadalafil Improves Exercise Tolerance and Pulmonary
Artery Responses to Exercise

Ritchie C. Shoemaker, MD, Margaret S. Maizel

Treatment of CFS Patients With Elevated C4a Using Low
Dose Erythropoietin Corrects Abnormalities in Central
Nervous System Metabolites and Restores Executive
Cognitive Functioning

Ritchie C. Shoemaker, MD, Margaret S. Maizel


Epidemiology Section

Self-Reported Chronic Fatigue and Timed Loaded
Standing in The Gambia and in Belgium

Jan Eyskens, Marie Ielegems, Greta Moorkens

Chronic Fatigue Syndrome and Fibromyalgia in Patients
Affected of Multiple Chemical Sensitivity

Joaquim Fernandez-SolB M.D., Santiago Nogué M.D., Elisabet
Rovira M.D., José- Manuel Fernández-Huerta M.D., Esther
Gómez M.D., Teresa GodBs Ph.D, Antoni Fernandez-SolB M.D
and Ferran Garcia Fructuoso M.D

The Development of an Epidemiological Case Definition
for Chronic Fatigue Syndrome / Myalgic
Encephalomyelitis (CFS/ME)

T Osoba, D Pheby, S Gray, L Nacul, J Duffield,

Toward an Empirical Case Definition of CFS

Leonard A. Jason, Karina Corradi, Susan Torres-Harding

Chronic Fatigue Syndromes: To Exclude to Not to
Exclude Other Diagnoses

James F. Jones, MD, Jin-Mann Lin, Elizabeth M. Maloney,
William C. Reeves.

Myalgic Encephalomyelitis (M.E.), The Definition:

Byron Hyde M.D.

Major Findings in 150 Consecutive M.E. and CFS Patients
Who Were Subjected to Total Body Physical and
Technological Examination of All Organs and Systems

Byron Hyde MD

A Discussion of the Los Angeles County Hospital 1934
M.E. epidemic and the Akureyri M.E. Epidemics

Byron Hyde MD


Fatigue Section

Comparing Heart Rate Variability in Chronic Fatigue
Syndrome and Healthy Controls using Commercially
Available Software

Eleanor Stein MD FRCP(C)

Post-Exertional Malaise Following an Exercise Challenge
Staci R. Stevens, Christopher R. Snell, Lucinda Bateman,

Travis L. Stiles and J. Mark VanNess

Lactose Intolerance and/or Fructose Malabsorption: A
Predisposing Factor for the Development of CFS?

P. De Becker, K. De Meirleir, J. De Leerssnijder, L. De Meirleir

Glutathione Depletion--Methylation Cycle Block
Hypothesis for the Pathogenesis of Chronic Fatigue

Richard A. Van Konynenburg, Ph.D.

Effective Treatment of Chronic Fatigue Syndrome and
Fibromyalgia with D-Ribose

Jacob E. Teitelbaum, MD, J.A. St.Cyr, MD, PhD, Clarence

What Do We Know About Multiple Chemical Sensitivity?
An Overview of the Research

Pamela Reed Gibson, Ph.D., Amanda Lindberg*, M.A.

Physicians Perceptions and Practices Regarding Patient
Reports of Chemical Sensitivity

Pamela Reed Gibson, Ph.D., Amanda Lindberg, M.A.

Unexplained Fatigue in Patients With and Without
Symptoms of Chronic Rhinosinusitis: Do These
Populations Differ?

Alexander C. Chester, MD, Georgetown University Medical
Center, Washington, DC

Decreased Renal Function in CFS Patients

Tae Park, M.D.

Validation and Usefulness of the Quick Environment
Exposure Sensivity Inventory (QEESI©) The Spanish

Cusco-Segarra AM, Garcia-Fructuoso FJ, Lopez-Crespi F,
Poca-Dias, V

Thyroid Malignancy Association with Cortical &
Subcortical Brain SPECT Changes In Patients Presenting
with a Myalgic Encephalomyelitis / Chronic Fatigue

Hyde, Byron M.D, Green, Tracy, Jean Léveillé M.D

Effect of Supplement With Lactic-Acid Producing Bacteria
on Fatigue and Physical Activity in Patients with Chronic
Fatigue Syndrome

Sullivan A, Nord CE, Evengard B


Gender Section

Why is the Prevalence of Chronic Fatigue Syndrome
Higher in Women than in Men?--A Hypothesis

Richard A. Van Konynenburg, Ph.D.

Specific Cardioventilatory Response in SFC Women
During a Very Light Intensity of Exercise

Suarez A, Javierre C, Alegre J, Garcia Quintana A, Barbany JR,
Morales A, Ventura JL

Differences in the Recovery Period Between a Group of
CSF Women and a Matched Control Group After a
Supramaximal Effort

Suarez A, Javierre C, Garcia-Quintana A, Alegre J, Ventura JL,
Barbany JR and Segura R


Genetics / Proteomics Section

Genetics of Chronic Fatigue Syndrome and its Subgroups
Defined by Latent Class Analysis

Mangalathu S. Rajeevan†, Alicia K. Smith, Elizabeth Maloney,
Eric Aslakson, Suzanne D. Vernon, William C. Reeves

Expression of MicroRNAs (miRNAs) in Chronic Fatigue
Syndrome (CFS)

Robert Petty, Tim Rutherford, Ken Laing, Jane Montgomery,
Selwyn CM Richards, Jonathan R Kerr

Transcriptome Analysis of Peripheral Blood Mononuclear
Cells from Patients with Chronic Fatigue Syndrome

Hanna Gräns, Birgitta EvengDrd and Peter Nilsson

Case-Control Study of Genotypes in Multiple Chemical
Sensitivity: CYP2D6, NAT1, NAT2, PON1, PON2 and

Gail McKeown-Eyssen, Cornelia Baines, David EC Cole,Nicole
Riley, Rachel F Tyndale, Lynn Marshalland Vartouhi Jazmaji

Presented by Alison C. Bested, M.D., FRCPC

Investigation of Human Gene Signatures of Past
Persistent Microbial Infections in Unstressed Normal
Blood donors; Possible Relevance to the Pathogenesis of
Chronic Fatigue Syndrome

Beverley Burke, Jonathan R Kerr


Pain Section

Chronic Fatigue Syndrome and Fibromyalgia Sufferers:
Now There's Hope and Help!

Alison C. Bested, M.D., FRCPC


Pediatrics Section

Are 'Hypoglycaemic' Symptoms in CFS Associated with

Fergus Cameron and Katherine Rowe

Pediatric Chronic Fatigue Syndrome and
Munchausen-by-proxy: A Case Study

Van Hoof E , De Becker P and De Meirleir K.


Sleep Section

Defining the Occurrence and Influence of Alpha-Delta
Sleep in Chronic Fatigue Syndrome

Elke Van Hoof, PhD, Pascale De Becker PhD, Charles Lapp
MD, Raymond Cluydts PhD, Kenny De Meirleir PhD

Perception versus Polysomnographic Assessment of
Sleep in CFS and Non-Fatigued Controls: Results from a
Population-Based Study

Matthias Majer, Ph.D., James F. Jones, M.D, Elizabeth R. Unger
MD, Ph.D, Laura Solomon Youngblood, MPH , Michael J.
Decker, R.N., Ph.D., Elizabeth Maloney, M.S., Dr. P.H., Brian
Gurbaxani Ph.D. , Christine Heim, Ph.D., William C. Reeves,
M.D., M.Sc


Viral / Immune Section

The Establishment of a National ME Observatory for the

D Pheby, PD Campion, M de L Drachler, E Lacerda, JC de
Carvalho Leite, L Nacul, F Poland, Trish Taylor.

Incidence of Chromosomally Integrated HHV-6 (CIHHV-6)
in a Cohort of CFS Patients with Clonal TCR- and
Lymphoid Malignancies

David Pomeranz1, Kathryn Hagen, Byron Hsu, Judy A. Mikovits
and Daniel L Peterson.

In Vivo-Induced Antigen Technology for Detection of
Antibodies Against Borrelia Burgdorferi and its
Cross-reactive Antigens in Patients with Chronic Fatigue
and Fibromyalgia

Aristo Vojdani, Ph.D., M.T., Immunosciences Lab., Inc., Bernard
Raxlen, M.D.

The Life Cycle of Cryptostrongylus pulmoni in Chronic
Fatigue Syndrome

Lawrence A. Klapow, PhD

Immune Effects of an Acute Exercise Challenge in Gulf
War Illness

Nancy G. Klimas, Martin Rosenthal and Mary A. Fletcher.

Visible and Near-Infrared Spectroscopy for Diagnosis of
Systemic Lupus Erythematosus, Showing Fatigue
Symptoms like Chronic Fatigue Syndrome

Yukiko Hakariya1, Akikazu Sakudo, Takanori Kobayashi, Seiki
Tajima, Junzo Nojima, Hirohiko Kuratsune, Yasuyoshi
Watanabe, and Kazuyoshi Ikuta1

Comparison of the Composition of the Intestinal Microflora
of FS Patients When in the Acute Phase of Illness

Brigitta Evengard, M.D., Ph.D.

Enteroviruses and Chronic Fatigue Syndrome

John K. Chia, M.D., Andrew Y. Chia, B.S.

Meta-Analysis of Well-Controlled, Randomized,
Double-Blinded, Phase II/III Clinical Trials of Poly I : Poly
C12U vs. Placebo in Chronic Fatigue Syndrome

David R. Strayer, Tom McCarron, Ying Han, William A. Carter,
Staci Stevens

Absence of TH2 – Biased Mucosal Immunity As Measured
by Eosinophil Peroxidase

Susana Repka-Ramirez, Kristina Naranch-Petrie, Gerald Gleich,
James N. Baraniuk

[Return to top]


Date:    Fri, 15 Dec 2006 16:21:36 -0500
From:    "Bernice A. Melsky" <bernicemelsky@xxxxx.xxx>
Subject: MED: Botulinum toxin in primary care medicine

Botulinum toxin in primary care medicine.

J Am Osteopath Assoc. 2006 Oct;106(10):609-14.

Felber ES.

402 Chestnut Ct, Bensalem, PA 19020-4315. efelbs@xxxxx.xxx

PMID: 17122031

Clostridium botulinum, a gram-positive anaerobic bacterium, produces a
potent neurotoxin that causes muscle paralysis. The therapeutic use of
botulinum toxin was discovered in the 1970s and has since been used to
treat patients with a broad range of medical complaints. Botulinum toxin
(BTX) is used in the primary care setting to treat conditions such as
allergic rhinitis, hyperhidrosis, lichen simplex chronicus, migraine,
myofascial pain syndrome, and certain task-specific idiopathic focal
dystonias (eg, writer's cramp)-in addition to its more publicized use for
cosmetic enhancement of the face. The expanding range of therapeutic
applications for BTX make it necessary for primary care physicians to
understand the biochemistry, preparation, indications, and interactions of BTX.

[The full text of this article is available for free at
http://www.jaoa.org/cgi/content/full/106/10/609 ]

[Return to top]


Date:    Sat, 16 Dec 2006 12:42:27 -0500
From:    Fred Springfield <fredspringfield@xxxxx.xxx>
Subject: RES: Low-resolution electromagnetic brain tomography (LORETA)  of monozygotic twins discordant for chronic fatigue syndrome

Low-resolution electromagnetic brain tomography (LORETA) of monozygotic
twins discordant for chronic fatigue syndrome.

Journal: Neuroimage. 2006 Dec 12; [Epub ahead of print]

Authors: Leslie Sherlin [a,*], Thomas Budzynski [c], Helen Kogan Budzynski
[c], Marco Congedo [b], Mary E. Fischer [e] and Dedra Buchwald [d]

[a] Nova Tech EEG, Inc., 8503 E Keats Ave, Mesa, AZ 85208, USA
[b] Nova Tech EEG, Inc., Grenoble, France
[c] The Department of Psychosocial and Community Health, University of
Washington, Seattle, WA, USA
[d] The Department of Medicine, University of Washington, Seattle, WA, USA
[e] The Division of Epidemiology and Biostatistics, University of Illinois,
Chicago, USA
[*] Corresponding Author: LeslieSherlin@aol.com

Received 14 September 2005;
revised 28 October 2006;
accepted 2 November 2006.
Available online 13 December 2006.

NLM Citation: PMID: 17169580

BACKGROUND: Previous work using quantified EEG has suggested that brain
activity in individuals with chronic fatigue syndrome (CFS) and normal
persons differs. Our objective was to investigate if specific frequency
band-pass regions and spatial locations are associated with CFS using
low-resolution electromagnetic brain tomography (LORETA).

METHODS: We conducted a co-twin control study of 17 pairs of monozygotic
twins where 1 twin met criteria for CFS and the co-twin was healthy. Twins
underwent an extensive battery of tests including a structured psychiatric
interview and a quantified EEG. Eyes closed EEG frequency-domain analysis
was computed and the entire brain volume was compared of the CFS and
healthy twins using a multiple comparison procedure.

RESULTS: Compared with their healthy co-twins, twins with CFS differed in
current source density. The CFS twins had higher delta in the left uncus
and parahippocampal gyrus and higher theta in the cingulate gyrus and right
superior frontal gyrus.

CONCLUSIONS: These findings suggest that neurophysiological activity in
specific areas of the brain may differentiate individuals with CFS from
those in good health. The study corroborates that slowing of the deeper
structures of the limbic system is associated with affect. It also supports
the neurobiological model that the right forebrain is associated with
sympathetic activity and the left forebrain with the effective management
of energy. These preliminary findings await replication.

Keywords: Chronic fatigue syndrome; Twins; Electroencephalography; Low
resolution electromagnetic tomography; LORETA

[This work was partially funded by grant U19Al38429 from the National
Institutes of Health (Dr. Buchwald) and Nova Tech EEG, Inc.]

[Return to top]


Date:    Sat, 16 Dec 2006 20:21:25 -0000
From:    Tom Kindlon <tomkindlon@xxxxx.xxx>
Subject: RES: Supraphysiological cyclic dosing of sustained release T3 in order to reset low basal body temperature

Title Supraphysiological cyclic dosing of sustained release T3 in order to
reset low basal body temperature.

Author(s) Friedman M, Miranda-Massari JR, Gonzalez MJ

Institution Friedman Clinic, Montpelier, VT, USA.

Source P R Health Sci J 2006 Mar; 25(1) :23-9.

Abstract The use of sustained release tri-iodothyronine (SR-T3) in clinical
practice, has gained popularity in the complementary and alternative medical
community in the treatment of chronic fatigue with a protocol (WT3)
pioneered by Dr. Denis Wilson. The WT3 protocol involves the use of SR-T3
taken orally by the patient every 12 hours according to a cyclic dose
schedule determined by patient response. The patient is then weaned once a
body temperature of 98.6 degrees F has been maintained for 3 consecutive
weeks. The symptoms associated with this protocol have been given the name
Wilson's Temperature Syndrome (WTS). There have been clinical studies using
T3 in patients who are euthyroid based on normal TSH values. However, this
treatment has created a controversy in the conventional medical community,
especially with the American Thyroid Association, because it is not based on
a measured deficiency of thyroid hormone. However, just as estrogen and
progesterone are prescribed to regulate menstrual cycles in patients who
have normal serum hormone levels, the WT3 therapy can be used to regulate
metabolism despite normal serum thyroid hormone levels. SR-T3 prescription
is based exclusively on low body temperature and presentation of symptoms.
Decreased T3 function exerts widespread effects throughout the body. It can
decrease serotonin and growth hormone levels and increase the number of
adrenal hormone receptor sites. These effects may explain some of the
symptoms observed in WTS. The dysregulation of neuroendocrine function may
begin to explain such symptoms as alpha intrusion into slow wave sleep,
decrease in blood flow to the brain, alterations in carbohydrate metabolism,
fatigue, myalgia and arthralgia, depression and cognitive dysfunction.
Despite all thermoregulatory control mechanisms of the body and the complex
metabolic processes involved, WT3 therapy seems a valuable tool to
re-establish normal body functions. We report the results of 11 patients who
underwent the WT3 protocol for the treatment of CFS. All the patients
improved in the five symptoms measured. All patients increased their basal
temperature. The recovery time varied from 3 weeks to 12 months.

Language eng

Pub Type(s) Journal Article

PubMed ID 16883675

[For some reason, the abstract has disappeared from PubMed. TK]

[Return to top]


Date:    Sat, 16 Dec 2006 20:30:02 -0000
From:    Tom Kindlon <tomkindlon@xxxxx.xxx>
Subject: RES: The epidemiology of chronic syndromes that are frequently unexplained: do they have common associated factors?

[This also showed up on PubMed then disappeared.  It does seem to have been
published - see http://ije.oxfordjournals.org/cgi/content/abstract/35/2/468.

The epidemiology of chronic syndromes that are frequently unexplained: do
they have common associated factors?

Int J Epidemiol. 2006 Apr;35(2):468-76. Epub 2005 Nov 22.

Vishal R Aggarwal1,*, John McBeth2, Joanna M Zakrzewska3, Mark Lunt2 and
Gary J Macfarlane1
1 Unit of Chronic Disease Epidemiology, School of Epidemiology and Health
Sciences, The University of Manchester, Manchester, UK
2 Arthritis Research Campaign Epidemiology Unit, School of Epidemiology and
Health Sciences, The University of Manchester, Manchester, UK
3 Barts and the London, Queen Mary's School of Medicine and Dentistry,
London, UK

* Corresponding author. Arc Epidemiology Unit, School of Epidemiology and
Health Sciences, The Medical School, University of Manchester, Oxford Road,
Manchester M13 9PT, UK. E-mail: vishal.r.aggarwal@manchester.ac.uk

PMID: 16303810

Background Syndromes for which no physical or pathological changes can be
found tend to be researched and managed in isolation although hypotheses
suggest that they may be one entity. The objectives of our study were to
investigate the co-occurrence, in the general population, of syndromes that
are frequently unexplained and to evaluate whether they have common
associated factors.

Methods We conducted a population-based cross-sectional survey that included
2299 subjects who were registered with a General Medical Practice in
North-west England and who completed full postal questionnaires (response
rate 72%). The study investigated four chronic syndromes that are frequently
unexplained: chronic widespread pain, chronic oro-facial pain, irritable
bowel syndrome, and chronic fatigue. Validated instruments were used to
measure the occurrence of syndromes and to collect information on a variety
of associated factors: demographic (age, gender), psychosocial (anxiety,
depression, illness behaviour), life stressors, and reporting of somatic

Results We found that 587 subjects (27%) reported one or more syndromes: 404
(18%) reported one, 134 (6%) reported two, 34 (2%) reported three, and 15
(1%) reported all four syndromes. The occurrence of multiple syndromes was
greater than would be expected by chance (P < 0.001). There were factors
that were common across syndromes: female gender [odds ratio (OR) = 1.8; 95%
confidence interval (95% CI) 1.5-2.2], high levels of aspects of health
anxiety like health worry preoccupation (OR = 3.5; 95% CI 2.8-4.4) and
reassurance seeking behaviour (OR = 1.4; 95% CI 1.1-1.7), reporting of other
somatic symptoms (OR = 3.6; 95% CI 2.9-4.4), and reporting of recent adverse
life events (OR = 2.3; 95% CI 1.9-2.8).

Conclusion This study has shown that chronic syndromes that are frequently
unexplained co-occur in the general population and share common associated
factors. Primary care practitioners need to be aware of these
characteristics so that management is appropriate at the outset.

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Date:    Sat, 16 Dec 2006 23:32:03 +0100
From:    "Dr. Marc-Alexander Fluks" <fluks@xxx.xx>
Subject: RES,NOT: CFS - The Chocolate Remedy

Source: Hull Daily Mail
Date:   December 16, 2006
URL:    http://www.thisishull.co.uk/displayNode.jsp?nodeId=197370&command=displayContent&sourceNode=197368&home=yes&more_nodeId1=136245&contentPK=16204319

Chocolate's Good for You - It's Official

It is the news anyone with a sweet tooth has been waiting for - chocolate
is officially good for you.

Doctors at Hull and East Yorkshire Hospitals NHS Trust have found eating
small bars of dark chocolate every day helps stop symptoms of chronic
fatigue syndrome (CFS).

The illness, also known as myalgic encephalomyelitis (ME), leaves sufferers
with debilitating fatigue and neurological problems. People taking part in
a study at Hull Royal Infirmary found they felt better after eating
specially formulated dark chocolate each day for eight weeks. However, only
chocolate made with 85 per cent cocoa was found to have health benefits.

Professor Steve Atkin, consultant endocrinologist, conducted the study.
He said: "No one has examined the effects of chocolate on CFS before, so
this is a very exciting result for us. The participants took 45g of
specially formulated chocolate high in polyphenols for eight weeks. They
then had a two-week period of rest before taking a placebo chocolate, low
in polyphenols, for another eight weeks. After the first period they
reported feeling less fatigue and once they moved to the placebo chocolate
they began feeling more fatigue again. They didn't experience any
significant weight gain either, which is an extra positive."

Chocolate contains a complex mixture of chemicals called polyphenols, which
are also reported to reduce the risk of death from coronary heart disease,
cancer and strokes. Chocolate also increases serotonin, which regulates
mood and sleep.

Tracy Denholm, 39, of Beckside Close, west Hull, has suffered from CFS for
more than 10 years. She said: "I have really bad attacks, where I cannot
see and I cannot use my body properly, like a newborn baby. My husband Ian
is my carer and, because I cannot guarantee how well I am going to feel, I
cannot work. I am quite cynical, but it did work and I felt much more
alert. I had more energy and didn't have any attacks."

The research was funded by the Diabetes Endowment Fund charity, for which
Professor Atkin is asking for donations. The trust is now looking for
people with type two diabetes, linked to age or weight, or polycystic
ovary syndrome, where many cysts grow on a woman's ovaries, to see if
chocolate helps.

Professor Atkin said: "I have a large amount of chocolate in the department
waiting to be eaten."

Anyone who is interested, or wants to donate to the fund, should call
Professor Atkin's research team on (01482) 675387. s.alexander@hdmp.co.uk


Hull and East Yorkshire Hospital NHS Trust
White Rabbit chocolatier

(c) 2006 Hull Daily Mail

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Date:    Sat, 16 Dec 2006 23:33:13 +0100
From:    Jan van Roijen <j.van.roijen@xxxxx.xx>
Subject: res: ME/CFS & Low-resolution electromagnetic brain tomography


Send an Email for free membership
       >>>> Help ME Circle  <<<<
 >>>>   13 December 2006    <<<<
Editorship : j.van.roijen@xxxxx.xx
Outgoing mail scanned by Norton AV

Sat, 16 Dec 2006 Fred Springfield posted the abstract of
*Low-resolution electromagnetic brain tomography (LORETA) of
monozygotic twins discordant for chronic fatigue syndrome* -
Sherlin L et al. - Co-Cure:

~jvr: as fair use I add the discussion section of this article


LORETA is a technique that facilitates a deeper understanding
of the neurological findings present in the EEG (Pascual-Marqui
et al., 2002). LORETA does not assume a limited number of
dipolar point sources or a distribution on a known surface, but
directly computes a current distribution throughout the full brain
volume. The result is a true 3-dimensional tomography with
localization that is preserved with a relatively low spatial
resolution. A direct comparison of results obtained from fitting
one and 2 dipoles with LORETA shows that the latter provides
physiologically meaningful results in many situations where
dipolar solutions fail (Pascual-Marqui, 1995). LORETA also
offers new hypotheses on the location of higher cognitive
functions in the brain (Pascual-Marqui, 1995), an area of great
interest to CFS patients and investigators. LORETA results are
reference-free, whereas surface EEG results inherently depend
upon the chosen reference. Taken together, the advantages of
LORETA over surface EEG analysis include the ability to
visualize anomalies in the deeper brain structures, and to
specify anomalies in frequency band and spatial location.

Our study found that the CFS twins had significantly higher levels
of current source density in the delta band in the left uncus and
parahippocampal gyrus, cingulate gyrus, and right precentral
gyrus of the frontal lobe. These findings are consistent with those
obtained with quantified surface EEG techniques both in our
experience (T. Budzynski, personal communication, 2005) as
well as in the literature (Billiot et al., 1997). Previous studies
have found that slowing of the deeper structures of the limbic
system is associated with effect. Limbic inputs from the
amygdala, entorhinal and perirhinal cortex, and subiculum, may
serve as a visceromotor system to provide frontal cortical
influence over autonomic and endocrine function. This system
appears to be involved in guiding behavior and regulation of
mood. It has been suggested that the right forebrain is
associated with sympathetic activity that includes negative
effect, withdrawal, and survival emotions (Craig, 2005). Findings
of increased theta in the specific Brodmann areas mentioned
may indicate blunted emotional processing, apathy, attention
difficulties, and motivation. Although these Brodmann areas are
less often correlated with increases in delta frequency, the left
forebrain has been implicated in the effective management of
energy, both mental and physical (Craig, 2005). Functional
imaging studies indicate that many of these areas also show
volume changes and decreased glial number and density in
mood-disordered subjects (Price, 1999).

One aspect of this study that deserves emphasis is the fact that
the participants were carefully chosen illness discordant twins.
To our knowledge, no previous studies of LORETA involving
families or twins have been published. However, previous twin
studies have demonstrated that many EEG features are
predominantly determined by heredity (Stassen et al., 1988;
Christian et al., 1996; Martinovic et al., 1997), including peak
alpha frequency (Posthuma et al., 2001). Of additional
relevance, in a study of older adults, 11% of "normal" control
subjects exhibited an abnormal EEG (Leuchter et al., 1993),
underscoring the value of exceedingly well-matched controls
such as the ones we used in this study.

This co-twin control study has several limitations related to our
sample selection and methods. Solicitation by advertisement
resulted in a volunteer sample of twin pairs with the potential for
ascertainment problems. However, the more desirable strategy
of systematically identifying twins from a well-defined
populationbased twin registry is not readily accomplished in the
United States. Thus, how representative the twins in this study
were either of twins in general, or of persons with CFS, is not
known. Because our twins were adults, primarily female, drawn
from community practices, and the ill twins met strict criteria for
CFS, we cannot generalize our findings to other samples and
more specialized settings. Nonetheless, the demographic and
clinical characteristics of our sample are similar to those
previously described in the CFS literature. Fourth, the order of
testing of the twins was not formally randomized, so that even
though technicians and investigators were blinded, some
unrecognized and unaccounted for biases might have resulted.
Finally, of concern given the high rates of depression in CFS, we
were not able to control for major depression. Due to the
constraints of the procedure implemented, no other factors
entered into the statistical design.

In conclusion, objective measures of delta and theta current
source density differed in twins with CFS and their healthy
cotwins. Because twin studies are especially well suited to the
study of illnesses for which the appropriate comparison groups
are not clearly defined (Hrubec and Robinette, 1984), they offer
an alternative approach to examine possible patterns of brain
activity in CFS. Future research should focus on investigating
larger groups of patients and control subjects. Although these
results await replication by others, they provide preliminary
evidence that objective electrophysiological parameters may
help identify persons with CFS. If alterations in LORETA
patterns in CFS can be confirmed, this technique could find
clinical applications.

[Return to top]


Date:    Sun, 17 Dec 2006 02:48:23 -0000
From:    Tom Kindlon <tomkindlon@xxxxx.xxx>
Subject: RES: High cocoa polyphenol rich chocolate improves the symptoms of chronic fatigue


Endocrine Abstracts (2006) 12 P68


High cocoa polyphenol rich chocolate improves the symptoms of chronic

T Sathyapalan1, P Campion1, S Beckett2, AS Rigby1 & SL Atkin1

1University of Hull, Hull, United Kingdom; 2Nestlé PTC, York, United



Chronic fatigue syndrome (CFS) is a debilitating condition with high
morbidity and associated reduced quality of life. There are data suggesting
neuro-endocrine axis involvement in CFS including disturbance in
hypothalamic-pituitary-adrenal axis, growth hormone axis, opioidergic system
and interactions with 5-Hydroxy Tryptamine (5-HT) system. Studies with
selective 5-HT-releasing agents, using prolactin or cortisol responses to
stimulation, found evidence of enhanced serotonergic responses in patients
with CFS. Cocoa is known to increase neurotransmitters like phenyl
ethylamine, serotonin, and anandamide in the brain.


To study the effect of high cocoa polyphenol rich chocolate in patients with
Chronic Fatigue Syndrome.


Double blinded, randomised, placebo controlled fashion using high cocoa
polyphenol rich chocolate in comparison to simulated iso-calorific chocolate
dyed brown as placebo.


Ten patients were enrolled in the study of which 5 patients completed both
arms. The Chandler Fatigue Scale score improved significantly after 8 weeks
of the high cocoa polyphenol rich chocolate phase (32.6 vs. 22.0 p value
0.012) and, interestingly, fell significantly when patients were given
simulated iso-calorific chocolate (25.3 vs. 28.6 p value 0.026). The
residual function, as assessed by the London Handicap scale, also improved
significantly after the active phase (0.485 vs. 0.628 p value 0.018). The
mean weight before and after the placebo arm were also unchanged (73.43 kg
vs. 73.85 kg, respectively p value 0.345). Anecdotally, two patients were
able to return back to work after having had their symptoms for a 2 year
period and continued on high cocoa polyphenol rich chocolate.


High cocoa polyphenols rich chocolate 15 g three times daily improved
fatigue and function in patients with chronic fatigue syndrome over a period
of 8 weeks compared to simulated iso-calorific chocolate. Whether hormonal
modulation by this high cocoa polyphenols rich chocolate also occurred needs

[Return to top]


Date:    Sun, 17 Dec 2006 14:01:52 -0500
From:    "Bernice A. Melsky" <bernicemelsky@xxxxx.xxx>
Subject: RES: Evidence of diffuse noxious inhibitory controls (DNIC)  elicited by cold noxious stimulation in patients with provoked  vestibulodynia

Evidence of diffuse noxious inhibitory controls (DNIC) elicited by cold
noxious stimulation in patients with provoked vestibulodynia.

Pain. 2006 Dec 12; [Epub ahead of print]

Johannesson U, de Boussard CN, Brodda Jansen G, Bohm-Starke N.

Karolinska Institutet, Department of Clinical Sciences, Division of
Obstetrics and Gynecology, Danderyd Hospital, 182 88, Stockholm, Sweden.

PMID: 17169489

Provoked vestibulodynia is a common cause of superficial dyspareunia in
young women. Recent evidence has pointed out the importance of studying
endogenous pain modulation in these women. An impairment of diffuse noxious
inhibitory controls (DNIC) has been suggested in chronic pain conditions
with a female predominance such as fibromyalgia and temporomandibular

Our aim was to examine whether patients with provoked vestibulodynia and
healthy women with or without combined oral contraceptives (COC) display a
DNIC response to cold noxious stimulation.

Twenty patients with provoked vestibulodynia not using COC, 20 healthy
women on COC and 20 healthy women without COC were included and tested days
7-11 of their menstrual cycle. Pressure pain thresholds (PPTs) and pain
ratings using VAS were measured on the arm and leg before and during a cold
pressor test. A socio-medical questionnaire, the Hospital and Anxiety
Depression Scale and the Short Form-36 were completed.

The majority of the subjects in all three study groups significantly
increased their PPTs during cold noxious stimulation indicating a DNIC
response. The patients displayed lower PPTs compared to the healthy women.
Depression, anxiety and bodily pain were more often reported by the
patients. No differences related to the intake of COC were observed between
the healthy women.

In conclusion, women with provoked vestibulodynia as well as healthy women
irrespective of COC status display a DNIC response indicating an endogenous
pain inhibition. However, the results imply a systemic hypersensitivity in
women with vestibulodynia with low general pain thresholds as compared to
healthy women.

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Date:    Mon, 18 Dec 2006 19:34:38 -0800
From:    Kimberly Hare <kimberly_ohare@xxxxx.xxx>
Subject: RES: Evidence Shows Fibromyalgia Pain Is Real: Experts - And yet many patients still face skepticism from doctors

Evidence Shows Fibromyalgia Pain Is Real: Experts
And yet many patients still face skepticism from doctors

MONDAY, Dec. 18 (HealthDay News) -- The pain of fibromyalgia is real, and
doctors need to take patients' complaints seriously, concludes a review paper
by University of Michigan Health System doctors.

"It is time for us to move past the rhetoric about whether these conditions are
real, and take these patients seriously as we endeavor to learn more about the
causes and most effective treatments for these disorders," Richard E. Harris,
research investigator in the division of rheumatology, department of internal
medicine at the U-M Medical School and a researcher at the U-M Health System's
Chronic Pain and Fatigue Research Center, said in a prepared statement.

Fibromyalgia is a debilitating pain syndrome that affects 2 percent to 4
percent of the population. However, the condition is often mistakenly diagnosed
as arthritis or even a psychological issue, and many patients face questions
about whether their condition is real, according to background information.

In their review, the U-M doctors said there is now "overwhelming data" that
fibromyalgia is real. They said it's characterized by a lower pain threshold
and is associated with genetic factors that can increase the risk of developing
the condition.

The authors cited recent studies involving pain, genetics and brain activity,
and said they hoped their findings would improve understanding and acceptance
of fibromyalgia and related conditions.

The paper appears in the December issue of Current Pain and Headache Reports.

More information

The American College of Rheumatology has more about fibromyalgia at

(SOURCE: University of Michigan Health System, news release, November 2006)

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HealthDayNews articles are derived from various sources and do not reflect
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End of CO-CURE Medical & Research Posts Only Digest - 11 Dec 2006 to 18 Dec 2006 (#2006-57)

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