CO-CURE Medical & Research Posts Only Digest - 20 Nov 2006 to 27 Nov 2006 (#2006-53)

CO-CURE Medical & Research Posts Only Digest - 27 Nov 2006 to 2 Dec 2006 - Special issue (#2006-54)There are 13 messages totalling 2343 lines in this issue.

Topics of the week:

1. NOT,RES: Major Trial Concludes Pregabalin (Lyrica®) Promising FM Pain Therapy
2. not,res: 2007 IACFS Professional Conference Agenda
3. RES: Central sensitization: a biopsychosocial explanation for chronic widespread pain in patients with fibromyalgia and chronic fatigue syndrome
4. MED, ACT: The TERM model
5. RES: Rheumatology in 2006 - Crossroads or Crisis?
6. ALL: Changes to our post format rule
7. act,med: ME/CFS -U.S. campaign raises awareness
8. RES: Measuring quality of life in rheumatic conditions
9. ACT,RES,NOT: The Gibson Parliamentary Inquiry - a Detailed Summary of the Report - 261106
10. act,med: Demand for research into ME
11. act,med: Invest in ME Newsletter - Gibson Inquiry
12. med,res: The UK Parliament -Scientific Research into ME
13. RES: Comments on Guest Editorial, "Chronic Fatigue Syndrome, Mast Cells, and Tricyclic Antidepressants"

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                       This is a special digest of
                  Co-Cure Research & Medical posts only
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Date:    Wed, 22 Nov 2006 10:56:06 -0500
From:    Co-Cure Moderator <ray@xxxxx.xxx>
Subject: NOT,RES: Major Trial Concludes Pregabalin (Lyrica®) Promising FM Pain Therapy

Major Trial Concludes Pregabalin (Lyrica®) Promising FM Pain Therapy

11-22-2006
Research presented at the 2006 American College of Rheumatology Scientific
Meeting points to significant, extended pain relief for many FM patients
with the drug pregabalin (Lyrica®).

A series of large clinical trials at the University of Kentucky, Lexington,
indicates the drug pregabalin (Lyrica®) - already approved in the U.S. to
treat nerve pain and seizures - is also an effective pain relief therapy
for many Fibromyalgia patients, with generally mild to moderate side-effects.
Further, the researchers report, their latest 6-1/2 month placebo
controlled, double blinded study indicated that for a significant
proportion of the FM patients the drug's therapeutic benefit endured for an
extended period of time.

As Crofford, et al. explained in presenting their findings* to the annual
American College of Rheumatology meeting in Washington, DC, November 10-15,
2006:

Read this article at http://www.immunesupport.com/library/showarticle.cfm?id=7535 [AOL: <a
href="http://www.immunesupport.com/library/showarticle.cfm?id=7535">Here</a>]

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Date:    Wed, 22 Nov 2006 21:07:12 +0100
From:    Jan van Roijen <j.van.roijen@xxxxx.xx>
Subject: not,res: 2007 IACFS Professional Conference Agenda

~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
       >>>> Help ME Circle  <<<<
 >>>> 21 November 2006     <<<<
Editorship : j.van.roijen@xxxxx.xx Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

From:  Jill McLaughlin <jillmclaughlin@xxxxx.xxx> The 8th International IACFS Professional Conference is Friday,
Jan 12- Sunday, Jan 14, 2007.

The agenda has been posted at: http://www.aacfs.org/p/218.html The following is a condensed version. More details and specific
times are included on the website, each day is listed separately.

For more information on registration, accommodations etc. go
to: http://www.aacfs.org/

Jill McLaughlin

________________________________________________


Professional Conference Information

2007 Conference Information » 2007 Professional Conference »


===========================================
Friday, January 12th
7:00am
Registration Opens
________________________________________________

8:00-8:10am

Welcome & Introduction

Nancy Klimas, M.D.
President, IACFS
Faculty, Dept. of Medicine,
University of Miami School of Medicine

Marly C.  Silverman
Founder, Patient Alliance for
Neuroendocrineimmune Disorders
Organization for Research and
Advocacy (P.A.N.D.O.R.A.)

________________________________________________

Fatigue Session

Session Chair: Nancy Klimas, M.D.

Session Description: Interdisciplinary session:
Lessons learned in other fatiguing illnesses;
Immune/neuro/endocrine interactions;
cellular mechanisms; interventions.

8:10-8:40am

Introductory Overview
Professor Yasuyoshi Watanabe
Osaka City Medical School, Osaka, Japan


Fatigue Paper Presentations

Estimation of fatigue state in patients with chronic fatigue
syndrome using Actigraphy and R-R interval power spectrum
analysis
Seiki Tajima, M.D.

Examining and Distinguishing Types of Fatigue
Nicole S. Porter, Ph.D.

CFS is Associated with High Allostatic Load in Georgia
Elizabeth M. Maloney, DrPH, M.S.

Chronic Fatigue Syndrome and the Abnormal Exercise Stress
Test
Margaret Ciccolella, J.D., Ed.D.

â-Alanine and g-Aminobutyric Acid in Chronic Fatigue
Syndrome
Ulf Hannestad, MSc.

A Comparison of Neurometabolites in  Chronic Fatigue
Syndrome, Generalized Anxiety Disorder, and Healthy
Volunteers
Paul S. Nestadt, B.S.

Alterations in Apoptosis Play a Role in Post-Infection Fatigue
Toni Whistler, Ph.D.


Fatigue Session Summary: State-of-the-Art with a
CFS-Perspective
Fred Friedberg, Ph.D., IACFS Board Member
Principal Investigator, Chronic Fatigue Syndrome Research
Project, Stony Brook University, Stony Brook, NY


________________________________________________

Break - Visit Exhibits
________________________________________________


Sleep Session

Session Chair: Birgitta Evengard, M.D., Ph.D.

Session Description:  Interdisciplinary session:
Sleep in other chronic illnesses; impact of sleep
cycle on function; neuro/ immune/endocrine
interactions; animal models; interventions

Introductory Overview
Joan L. Shaver, Ph.D., R.N., FAAN
Professor & Dean, University of Illinois at
Chicago (UIC), College of Nursing


Sleep Session Summary: State-of-the-Art with a CFS
Perspective
Charles Lapp, M.D., IACFS Board Member
Private Practice Clinician, Raleigh, NC
Clinical Professor, Duke University

________________________________________________

12:00-12:55pm
Lunch - Visit Exhibits & Posters
________________________________________________



Lunch Workshop- CFS Research Funding

Nancy Klimas, M.D.
President, IACFS
Faculty, Dept. of Medicine,
University of Miami School of Medicine


________________________________________________

Clinical Trials Session

Session Co-Chairs:
Barry Hurwitz, Ph.D.
Jose G. Montoya, M.D.

Session Description: Discussion of three specific on-going
clinical trials for CFS intervention.

Introductory Overview
Barry Hurwitz, Ph.D.


Clinical Trials Paper Presentation

Therapeutic Effect of Epoetin Alpha on Red Blood Cell Volume,
Perceived Fatigue and Susceptibility to Syncope in Chronic
Fatigue Syndrome:  Miami Epoetin AlphaClinical Trial
Barry Hurwitz, Ph.D.


Use of Valganciclovir (VGCV) in Patients with High Antibody
Titers Against Human  Herpes Virus 6 (HHV-6) and
Epstein-Barr Virus (EBV) who were Experiencing Virus Induced
Fatigue with CNS Dysfunction (VIFCD)
Jose G. Montoya, M.D.


Phase I Clinical Trial of Valacyclovir in the Epstein-Barr Virus
Subset of Chronic Fatigue Syndrome
A. Martin Lerner, M.D.
________________________________________________

Pain Session

Session Chair: Lucinda Bateman, M.D.

Session Description: Mechanisms of pain in chronic illness;
influence of inflammation; central and peripheral pain
mechanisms; interventions

Introductory Overview: A Life of Pelvic Pain
Karen J. Berkley, Ph.D.
McKenzie and Distinguished Research Professor,
Program in Neuroscience, Florida State University


Pain Paper Presentations

Inflammation and Arterial Stiffness in Patients with Chronic
Fatigue Syndrome
Vance A. Spence, Ph.D.

Chronic widespread pain and its comorbidities: A
population-based study
Kenji Kato, Ph.D.


Pain Session Summary: State-of-the-Art with a CFS
Perspective

________________________________________________

2:45-3:00pm
Break - Visit Poster Presentations & Exhibits
________________________________________________


Epidemiology & Case Definition Session

Session Co-Chairs:
William C. Reeves, M.D.
Eleanor Z. Hanna, Ph.D.

Session Description: Prevalence, incidence,
illness trajectory, impact on research priorities


Introductory Overview
Richard Herrell, Ph.D.
NIMH, Washington, D.C.


Epidemiology Case Definition Paper Presentation
Subgroups of Chronic Fatigue Syndrome in Metropolitan, Urban,
and Rural Georgia
William C. Reeves, M.D.


Epidemiology Case Definition Panel Discussion
Moderator: Eleanor Z. Hanna, Ph.D.

Panel:
William C. Reeves, M.D.
Leonard Jason, Ph.D.
James F. Jones, M.D.

Epidemiology Paper Presentations

Change in Chronic Fatigue Symptom-Complex: 10-Year Interval
Post Gulf War Deployment
Han K. Kang, Dr. P.H.

Chronic Fatigue Syndrome in the Offspring of Mothers with CFS
Rosemary A. Underhill, MB, BS, FRCSE, MRCOG

Preliminary observations from a case-control study on chronic
fatigue syndrome in monozygotic Swedish Twins
Andreas Jacks, M.D.

Unidentified somatic complaints following 9/11: More than
depression?
Barbara G. Melamed, Ph.D., ABPP

The Economic Impact of Chronic Fatigue Syndrome in a
Community-Based Versus a Tertiary Sample
Leonard Jason, Ph.D.


Epidemiology Session Summary: State-of-the-Art with a
CFS-Perspective
Leonard A. Jason, Ph.D., Vice President, IACFS
Center for Community Research, DePaul University, Chicago, IL

________________________________________________

International CFS Forum

Session Chair:
Hirohiko Kuratsune, M.D., D.Med.Sci.

Session Description: Short Oral Presentations and Panel
Discussion on International Health with representatives from
across the globe discussing research directions and clinical
approaches.


International CFS Forum Paper Presentations

Chronic Fatigue Syndrome in Developing Countries: The
Nigerian Case
Leonard A. Jason, Ph.D.

Chronic Fatigue Syndrome in Iceland
Eirikur Lindal, Ph.D.

Panel Discussion

Moderator: Hirohiko Kuratsune, MD, D.Med.Sci.
IACFS Board Member
Director, Japanese Study Group for Chronic Fatigue Syndrome
in Ministry of Education, Science, Sports and Culture Assistant
Professor, Osaka University Graduate School of Medicine,
Osaka, Japan

Panel:

Birgitta Evengard, M.D., Ph.D.,Board Member, IACFS
Chairman Conference Planning Committee, IACFS
Senior Doctor & Professor, Karolinska University Hospital,
Stockholm, Sweden

Kenny De Meirleir, M.D., Ph.D., Board Member, IACFS
Professor of Physiology, Pathophysiology and Medicine,
Vrije Universiteit, Brussels Belgium

Nancy Klimas, M.D., President, IACFS
Faculty, Dept. of Medicine,
University of Miami School of Medicine

Marcia Harmon
CFIDS Association of America

Umberto Tirelli, M.D.
Director, Department of Medical Oncology, National Cancer
Institute, Aviano, Italy

Rosamund Vallings, MB, BS
Advisor, New Zealand ME/CFS Association
Editorial Board, International Journal of Chronic Fatigue
Syndrome

________________________________________________

6:00 pm
Registration Closes
________________________________________________


6:00-7:00pm
IACFS Membership Meeting


===========================================
Saturday, January 13th

8:00am
Registration Opens
________________________________________________



Brain Function Session

Session Chair: Patricia Fennell, MSW, LCSW-R

Session Description: Mechanisms of brain dysfunction;
what can be learned from imaging; clinical assessment of
cognition and mental fatigue; clinical interventions


Brain Function Paper Presentations

Brain SPECT Quantification in Chronic Fatigue Syndrome
Profesor J.  Alegre-Martín

Brain SPECT Quantification in Chronic Fatigue Syndrome:
Comparison of Basal and Post-Stress Studies
Profesor J.  Alegre-Martín

Assessment of Information Processing in Chronic Fatigue
Syndrome
Fumiharu Togo, Ph.D.

Using a Reaction Time Paradigm to Assess Neurocognitive
Function in CFS
Christopher R. Snell, Ph.D.

Defining Occupational Disability in Patients suffering from
Chronic Fatigue Syndrome
Elke L.S. Van Hoof, Ph.D.

Session Summary: State-of-the-Art with a CFS-Perspective
Hirohiko Kuratsune, M.D.,D.Med.Sci.,
Dept. of Molecular Medicine, Hematology, and Oncology Osaka
University Graduate School of Medicine, Osaka, Japan

________________________________________________

10:00-10:30am
Break -Visit Poster Presentations & Exhibits
________________________________________________


Behavioral Health Session

Session Chair:Fred Friedberg, Ph.D.

Session Description Interdisciplinary session:
psychoneuroimmunology and health, Coping with chronic illness,
treatment

Introductory Overview
Eleanor Stein, M.D., FRCP(C)
Private Practice Psychiatric Care, Calgary, Canada


Behavioral Health Paper Presentations

Session Summary: Behavioral Health with a CFS-Perspective
Patricia A. Fennell, MSW, LCSW-R, IACFS Board Member
President/CEO, Albany Health Management Associates
________________________________________________

12:00-1:00pm
Lunch - Visit Poster Presentations & Exhibits

Lunch Workshop: Success in Clinical Practice,
How to Manage a Successful Practice

________________________________________________

Pediatrics Session

Session Chair: Leonard A. Jason, Ph.D.

New Pediatric Case Definition for CFS
Leonard A. Jason, Ph.D., Vice President, IACFS
Center for Community Research, DePaul University
Chicago, IL

David Bell, M.D., IACFS Board Member
Chairman, CFS Advisory Committee of the Department of
Health and Human Services, Associate Clinical Professor,
Department of Pediatrics, University of NY at Buffalo

Case Studies / Panel Discussion
Leonard A. Jason, Ph.D., David S. Bell, M.D.
Katherine S. Rowe, M.D.
Elke L.S. Van Hoof, Ph.D.
Charles Lapp, M.D.
Alan Gurwitt, M.D.
Teruhisa Miike, M.D., Ph.D.
Susan Torres-Harding, Ph.D.
Kenny De Meirleir, M.D.


Pediatric Data Pieces

Dysmenorrhoea and exacerbation of CFS symptoms
Katherine S. Rowe, M.D.

How do adolescents with chronic fatigue syndrome perceive
their social environment? A quantitative study
Elke L.S. Van Hoof, Ph.D.

Pilot Study: Education and Strategies to Help Adolescents with
CFS (and their families) Cope with CFS
Constance W. Van der Eb, Ph.D.
________________________________________________

Poster Presentation Session (Selected Oral Presentations)

Chair: Fred Friedberg, Ph.D.

Session Description: The IACFS Planning Committee selected
several outstanding poster presentations and provided authors
with an opportunity to give a short oral presentation during this
session.

Behavioral Section

Computer-assisted cognitive function assessment in
fibromyalgia, chronic fatigue syndrome and multiple chemical
sensitivity patients
Dr. Ferran J. García-Fructuoso

A Qualitative analysis of the experience and influence of low
intensive interval training in women  with Chronic Fatigue
Syndrome
Claudia Lennartsson, MSc

A Chronic Fatigue Syndrome Health Behavior and Education
Train-the-Trainer Program for Primary Care Providers
Dana Jones Benet, PhD, MPH

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

________________________________________________

Brain Function Section

Autonomic, metabolic and immune responses to exercise
testing
J. Mark VanNess, Ph.D.

Lipid Replacement and Antioxidant Therapy for Restoring
Mitochondrial Function in Fatiguing Illnesses and Chronic
Fatigue Syndrome
Garth Nicolson, Ph.D.

A Randomized Double-blind, Placebo-controlled cross-over
Study with Methylphenidate in Sixty Patients with Chronic
Fatigue Syndrome
Daniel Blockmans M.D., Ph.D.

________________________________________________

Clinical Trials Section

Effect of Modafinil on daytime hypersomnia in patients with
Chronic Fatigue Syndrome
Dr. Ferran J. García-Fructuoso


Epidemiology Section

Self-reported Chronic Fatigue and Timed Loaded Standing in
The Gambia and in Belgium
Greta Moorkens, M.D., Ph.D.


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, M.A.

Lactose intolerance and/or fructose malabsorption: a
predisposing factor for the development of CFS?
Professor Dr. Pascale De Becker

________________________________________________

Genetics / Proteomics Section
Genetics of Chronic Fatigue Syndrome and its subgroups
defined by latent class anaylsis
Mangalathu Rajeevan

Expression of MicroRNAs (miRNAs) in Chronic Fatigue
Syndrome (CFS)
Jonathan R. Kerr,  BSc, MBBCh, MD, PhD, FRCPath.



Viral / Immune Section

The establishment of a National ME Observatory for the UK
Dr. Derek Pheby

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

________________________________________________

Gender Aspects of CFS Session

Session Chair:
Leonard Jason, Ph.D.

Session Description: Interdisciplinary session: Impact of gender
on mechanisms of illness; gender and methodology issues;
menopause and CFS/FM, use of sex hormones in treatment
pm

Introductory Overview
Birgitta Evengard, M.D., Ph.D..IACFS Board Member
Chairman Conference Planning Committee, IACFS
Senior Doctor & Professor, Karolinska University Hospital,
Stockholm, Sweden


Session Summary: Gender Aspects with a CFS-Perspective
Lucinda Bateman, M.D., IACFS Board Member
Adjunct Clinical Faculty, University of Utah, Department of
Internal Medicine, Adjunct Instructor, University of Utah, Family
and Preventive Medicine

________________________________________________

Evidence for Diastolic Dysfunction in the Chronic Fatigue
Syndrome enhanced by Tilt-Echocardiography: A study of ninety
consecutive cases
Paul Cheney, M.D.


________________________________________________

5:30-6:30pm
Cocktail - Networking Reception
________________________________________________


IACFS  Banquet

6:30-7:15pm
Meal Service

Dessert Service &
Awards Presentation

Rudy Perpich Memorial Award

Junior Investigator Award

Nelson Gantz Clinician Award

Panel Discussion: Politics of Women's Health

Moderator: Bob Mayer - Journalist

Patricia Ireland, Esq
Past President, National Organization for Women

Birgitta Evengard, M.D., Ph.D., IACFS Board Member
Chairman Conference Planning Committee, IACFS
Senior Doctor & Professor, Karolinska University Hospital,
Stockholm, Sweden

Eleanor Z. Hanna, Ph.D.
Associate Director for Special Projects and Centers, Office of
Research on Women¹s Health, Office of the Director, National
Institutes of Health

Vivian Pinn, M.D.
Associate Director for Research on Women's Health / Director,
Office of Research on Women's Health, National Institutes of
Health, (NIH)


================================================

Sunday, January 14th
8:00am
Registration Opens
________________________________________________

Genetics / Proteomics Session

Session Chair:
Kenny De Meirleir, M.D.

Session Description: Integrative session: What we have
learned from other illnesses; how gene arrays can help integrate
multidiscipline data; proteomics and its potential as a clinical
tool

8:00-8:30am
Introductory Overview
Suzanne D. Vernon, Ph.D.

Genetics / Proteomics Paper Presentations

Genetic Profiles in Severe Forms of Fibromyalgia and Chronic
Fatigue Syndrome
Ferran J. García-Fructuoso, M.D.

Genetic contribution to Chronic Fatigue Syndrome (CFS) and
associated pain- and fatigue- related diagnoses described in a
population-based genealogical resource in Utah
Frederick S. Albright, M.S., Ph.D.

KIR Immunogenetics in CFS Italian Patients
Professor Mariaclara Cuccia

Reduced Levels of Oestrogen receptor {beta} mRNA in Swedish
Patients with Chronic Fatigue Syndrome
Birgitta Evengard, M.D., Ph.D.

Proteomic Biosignature of Chronic Fatigue Syndrome in
Cerebrospinal Fluid
James Baraniuk M.D.

CFS Heterogeneity Elucidated via Subspace Clustering
Eric R. Aslakson, M.S.

Session Summary: Genetics / Proteomics with a
CFS-Perspective
Jonathan R. Kerr,  BSc, MBBCh, MD, PhD, FRCPath.
Sir Joseph Hotung Clinical Senior Lecturer in Inflammation
Hon. Consultant in Microbiology, St George¹s University of
London

________________________________________________

10:15-10:30am
Break - Visit Posters & Exhibits
________________________________________________


10:30am
Exhibit Hall and Poster Sessions Conclude
________________________________________________

New Methods for Evaluating the Fatigue State Session

Session Co-Chairs:
Hirohiko Kuratsune, M.D., D.Med.Sci.
Professor Yasuyoshi Watanabe

Coordinated by the Japanese Association for Fatigue Sciences


BSpectroscopic diagnosis of chronic fatigue syndrome by
visible and near-infrared spectroscopy in serum samples
Akikazu Sakudo, Ph.D.
Research Associate, Department of Virology, Center for
Infectious Disease Control, Research Institute for Microbial
Diseases, Osaka University, Department of Physiology, Osaka
City University Graduate School of Medicine, Osaka, Japan

Enhancement of herpes virus 6 (HHV-6) and herpesvirus 7
(HHV-7) reactivation in saliva during the fatigue state
Yoshitaka Kajimoto, M.D.
President and CEO, Soiken, Inc.
Affiliate Professor of Medicine, Wakayama Medical University

Application of DNA chip for Fatigue Assessment
Kazuhito Rokutan, M.D., Ph.D.
Professor & Director, Department of Stress Science,
Institute of Health Biosciences, The University of Tokushima
Graduate School, Tokushima, Japan
________________________________________________

11:30-12:30pm
Lunch Break
________________________________________________


Viral and Immune Interactions and Health Session

Session Co-Chairs:
Dharam V. Ablashi, DVM, MS, Dip. Bact.
Lee Meisel, M.D., J.D.

Session Description: Chronic active viral infection in CFS;
diagnostic methodology issues; sub-grouping by viral status;
impact on immune and neurological regulation; impact of
antiviral treatment on outcome.

Coordinated by the HHV-6 Foundation

Overview of EBV, Stress and Viral Latency in CFS Ronald
Glaser, Ph.D.
Director, Institute for Behavioral Medicine & Professor,
Molecular Virology, Immunology & Medical Genetics, Ohio State
University, Medical Center.


Overview of HHV-6 in CFS and Diagnostic Assays for Detecting
Chronic Active HHV-6 and EBV
Dharam V. Ablashi, DVM, MS, Dip. Bact.
Co-Founder, Past President and Treasurer, IACFS
Co-Founder, International Epstein-Barr Virus Association
Scientific Director, HHV-6 Foundation

________________________________________________

Immune Paper Presentations

Immunological Comparison of Gulf War Illness and CFS
Mary Ann Fletcher, Ph.D.

Elevated Proinflammatory IL-6 in Patients with Chronic Fatigue
Syndrome
Brian M. Gurbaxani, Ph.D.


Viral Paper Presentations

The HHV6 U45 protein is not a functional dUTPase, but it does
induce immune dysregulation similar to the EBV-encoded
dUTPase
Marshall V. Williams, Ph.D.

Incidence of HHV-6 and EBV Infection in Chronic Fatigue
Syndrome Patients
Susan Levine, M.D.

HHV-6 and HHV-7 Infection in Chronic Fatigue Syndrome
Modra Murovska, Ph.D.

Chronic Fatigue Syndrome is Associated with Persistent
Enterovirus Infection of the Stomach
John K. Chia, M.D.

Chronic Bacterial Co-Infections in CFS and CFS Patients
Subsequently Diagnosed with Lyme Disease
Garth L. Nicolson, Ph.D.


HHV-6 Biology, Viruses and Immunology in CFS
Anthony L. Komaroff, M.D.
Professor of Medicine, Harvard Medical School

________________________________________________

Closing Remarks
Anthony L. Komaroff, M.D.
Professor of Medicine, Harvard Medical School
________________________________________________


General Conference Sessions Concludes
________________________________________________

Break
________________________________________________


Post Conference Workshop: Infections in CFS

Session Description: Non CME bonus session designed
for investigators developing protocols that integrate viral and
immune measures or antiviral or immunomodulatory strategies

Session Co-Chairs:

Ronald Glaser, Ph.D.
Dharam V. Ablashi, DVM. MS, Dip Bact

Basic Science Panel Discussion
Ronald Glaser, Ph.D.
Dharam V. Ablashi, DVM, MS, Dip. Bact.
John K. Chia, M.D.
Yoshitaka Kajimoto, M.D.
Jonathan R Kerr  BSc, MBBCh, MD, PhD, FRCPath.
Constance Knox, Ph.D.
Modra Murovska, Ph.D.
Garth L. Nicolson, M.D.
Marshall Williams, Ph.D.

Session Co-Chairs:
Jose G. Montoya, M.D.
Daniel Peterson, M.D.

Clinical Science Panel Discussion
Jose G. Montoya, M.D.
Dan Peterson, M.D.
Joe Brewer, M.D.
Nancy Klimas, M.D.
Anthony L. Komaroff, M.D.
Susan Levine, M.D.
Martin Lerner, M.D.


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Date:    Thu, 23 Nov 2006 10:49:49 -0500
From:    Fred Springfield <fredspringfield@xxxxx.xxx>
Subject: RES: Central sensitization: a biopsychosocial explanation for  chronic widespread pain in patients with fibromyalgia and chronic  fatigue syndrome

Central sensitization: a biopsychosocial explanation for chronic widespread
pain in patients with fibromyalgia and chronic fatigue syndrome.

Journal: Clin Rheumatol. 2006 Nov 18; [Epub ahead of print]

Authors: Meeus M, Nijs J.
Affiliation: Department of Human Physiology, Faculty of Physical Education
and Physiotherapy, Vrije Universiteit Brussel (VUB), Brussel, Belgium.

NLM Citation: PMID: 17115100


In addition to the debilitating fatigue, the majority of patients with
chronic fatigue syndrome (CFS) experience chronic widespread pain. These
pain complaints show the greatest overlap between CFS and fibromyalgia (FM).

Although the literature provides evidence for central sensitization as
cause for the musculoskeletal pain in FM, in CFS this evidence is currently
lacking, despite the observed similarities in both diseases. The knowledge
concerning the physiological mechanism of central sensitization, the
pathophysiology and the pain processing in FM, and the knowledge on the
pathophysiology of CFS lead to the hypothesis that central sensitization is
also responsible for the sustaining pain complaints in CFS.

This hypothesis is based on the hyperalgesia and allodynia reported in CFS,
on the elevated concentrations of nitric oxide presented in the blood of
CFS patients, on the typical personality styles seen in CFS and on the
brain abnormalities shown on brain images. To examine the present
hypothesis more research is required.

Further investigations could use similar protocols to those already used in
studies on pain in FM like, for example, studies on temporal summation,
spatial summation, the role of psychosocial aspects in chronic pain, etc.

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Date:    Thu, 23 Nov 2006 15:08:13 -0800
From:    Co-Cure moderators <cocuremoderator@xxxxx.xxx>
Subject: MED, ACT: The TERM model

From: "Vivian Hvenegaard" <hvenegaardsforlag@xxxx.xxxx.xx> May be reposted -

According to the information on Co-Cure about the "26th European Conference on
Psychosomatic Research, Dubrovnik" http://www.hdpi.hr/main.htm from Kasper on
the 21-11-2006, I will draw attention to the workshop lectures by the Danish
liaison psychiatrist Dr Per Fink PhD and Dr Marianne Rosendal PhD.

http://www.hdpi.hr/workshops.pdf Fink and Rosendal are two of three authors of "THE TERM-MODEL, The Extended
Reattribution and Management Model", a revision of "Gask & Goldbergs The
Reattribution Model". You find the TERM Model in English here http://www.auh.dk/cl_psych/term/TERM-UK/index.htm

More information on Marianne Rosendal's workshops in Dubrovnik here http://person.au.dk/da/m.rosendal@alm.au.dk/act

The Danish patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
(G93.3, Holmes et al 1988) are experiencing severe problems due to the
flooding of psychiatric Wessely inspired scientific "CFS" material, coming
from the "Research Unit for Functional Disorders" (Psychosomatics and CL
Psychiatry in Aarhus, Denmark). http://www.auh.dk/cl_psych/uk/index.htm.

After several years where the public media and some few, but very powerful
psychiatrists/psychologists in Denmark, with eager have widespread the
perception that people with "Chronic Fatigue Syndrome", in Danish "Kronisk
Traethedssyndrom", are not "actually ill", it's "all in their head", they just
"sponge on community", and after social- and health workers have been educated
on the basis of the TERM Model in how to handle "chronic somatizing" (Cap. 7),
the ME/CFS patient are rejected both medical assistance, early retirement
pension and social services. Patients are forced into harmful exercise
according to treatment advice in the TERM Model or into exhausting work
testing and accused of not being willing to co-operate, when they report sick.
Children are rejected home tutor and threatened with removal, exactly like you
have seen it in England and anywhere these conceptions are spreading.

In the guise of being able to economize the rising expense of early retirement
for Chronic Fatigue Syndrome, Fibromyalgia and similar disease, P. Fink
applied for permission to start a liaison research unit and was generously
supported with millions of Danish kroner by our government and county
authorities. The aim, as he wrote in the application for the unit, was to find
the cause and a cure for these suffering people. But as a wolf in sheep's
clothing, he has made life a nightmare for patients with the TERM Model.

The term "chronic somatizing", an "untreatable psychiatric disorder", used in
the TERM Model for Fibromyalgia and Chronic Fatigue Syndrome, were initially
covering patients with more than 6 hospitalizations without adequate organic
cause, according to P. Fink's PhD from 1997*. The data were processed from
hospital lists, and were not clinical research. Half of the patients had a
history of psychiatric hospitalization and 80% of the patients had received
psychiatric treatment.
(*Fink P. Kronisk somatisering, 1997, Ph.D. Det Sundhedsvidenskablige
Fakultet, Århus Universitet (also available in English).

The research which forms the basis for the TERM Model was done by other
researcher on randomly chosen patients from GP. By inquiry, none of these 8
researchers, whom I asked, knew of any ME/CFS G93.3 patients in their
research, and they had no knowledge of the illness or criteria (Holmes et al
criteria, due to the Danish National Board of Health 1992).

When the unit released the TERM Model back in 2002 and started to distribute
it, there had been NO control at all on the affects of the TERM Model either
on patients or GP's. When the first trail of the effect of the TERM Model were
available, preformed on randomly chosen patients in GP, not ME/CFS or
fibromyalgia patients, it shoved "significant effects at GP level" maybe due
to the legalization for the GP to 'reject' patients with unexplainable
symptoms, but the "effects at patient level are uncertain and different
studies show conflicting results", Rosendal concluded. As indicated in the
target of the PhD of Rosendal, the aim of the TERM Model was to find a cure,
but "the effects on patient health and health care utilisation were small or
insignificant". In stead of admitting their lack of results they keep on in
new clothing now calling their workshops MUS (Medically Unexplained Symptoms),
but the TERM Model are unchanged, and CFS and fibromyalgia are still
"untreatable psychiatric disorders".

So I'll warn you of this TERM Model, it is a thriller if you read it in the
light of ME/CFS.

We do our utmost in Denmark to inform the doctors and social workers about the
severe consequences of ME/CFS and the abuse of "Kronisk Traethedssyndrom" by
the Danish liaison unit. It is hard work, as all the media for some years now
have rejected all attempts to explain the errors made by P. Fink and his
"gang".

I fear the harm this TERM Model can bring about in other countries, so please
be on the lookout for it. Unfortunately the informations on my website on the
subject are in Danish only http://www.kronisktraethedssyndrom.dk/termmodellen.htm, I never imagined that
anything with a foundation so weak and unscientific could ever gain ground
outside Denmark.

Kind regards

Vivian Hvenegaard
Patient, carer and proprietor of www.kronisktraethedssyndrom.dk

[Return to top]

------------------------------

Date:    Fri, 24 Nov 2006 15:50:36 -0500
From:    "Bernice A. Melsky" <bernicemelsky@xxxxx.xxx>
Subject: RES: Rheumatology in 2006 - Crossroads or Crisis?

Rheumatology in 2006 - Crossroads or Crisis?

Bull Hosp Jt Dis. 2006;64(1-2):9-11.

Pisetsky DS.

PMID: 17121482


Rheumatology has made remarkable advances in patient treatment in the past
decade related to the impressive array of new drugs that have been approved
or are undergoing clinical trial. While this situation should engender
optimism for the future, concerns about sustaining momentum have been raised.

These concerns relate to uncertainty in the research agenda for major
diseases such as osteoarthritis and fibromyalgia, lack of informatics
systems to allow accurate assessment of risks and benefits of new
treatments, and a paucity of clinical trials in rheumatoid arthritis aimed
at sustained remission or cure.

Fortunately, the opportunities for the future remain very bright because of
burgeoning research in biomedicine and outcomes assessment as well as
progress in developing personalized medicine to individualize treatment better.

[Return to top]

------------------------------

Date:    Fri, 24 Nov 2006 19:39:38 -0500
From:    Co-Cure Moderators <mods@xxxxx.xxx>
Subject: ALL: Changes to our post format rule

We've updated our rule on the requirements for post formatting to
recognize some problems that exist with many modern e-mail clients and
to deal with the fact that any attachment sent to the list address
<co-cure@listserv.nodak.edu> will be stripped from your message by our
LISTSERV(tm) software in an attempt to prevent the spread of computer
viruses without ever being seen by a human being.  The rule now reads:

5. Format of posts: Please send posts to the list in plain ASCII text.
Enriched text, HTML-coded text, or encoding of any type pose a genuine
problem. Many of our members either can't utilize these messages or may
not even receive them. If you don't know how to send an e-mail message
in plain ASCII text, see www.expita.com/nomime.html for some helpful information. Also, please do
not send attachments with your post. Our LISTSERV(tm) software is set to
strip all attachments sent to the list. Even the moderators won't see
them before your message is approved. Almost any potential attachment
can be cut and pasted into your email message. If you need help in
handling this requirement, please write to the moderators.
_____________________________________________

The full set of rules for the Co-Cure list can be found at http://www.co-cure.org/ccops.htm#rules

Ray Colliton
Co-Cure Listowner

[Return to top]

------------------------------

Date:    Sat, 25 Nov 2006 05:59:59 +0100
From:    Jan van Roijen <j.van.roijen@xxxxx.xx>
Subject: act,med: ME/CFS -U.S. campaign raises awareness

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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Quotes from

Nancy Klimas, M.D - clinician-researcher, Faculty, Dept. of
Medicine, University of Miami School of Medicine and President
of The International Association for Chronic Fatigue Syndrome:

*...If it were called chronic neuroinflammatory disease,
then people would get it," she said. "Up until now
nobody's been willing to change the name, but now
there's proof [that inflammation occurs in the brain.]

There's evidence that the patients with this illness
experience a level of disability that's equal to that of
patients with late-stage AIDS, patients undergoing
chemotherapy, patients with multiple sclerosis....*

~jvr

http://www.sun-sentinel.com/news/local/southflorida/sfl-1124chronic,0,4198148.story?coll=sfla-home-headlines

Chronic fatigue cases finally getting respect
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

U.S. campaign raises awareness

BY NANCY MCVICAR
South Florida Sun-Sentinel
Posted November 24 2006

Marly Silverman had a high-energy job as a financial consultant
to a major U.S. bank, until she came down with a viral infection
that she couldn't seem to shake. She was exhausted all the time,
ran a low-grade fever and, lost weight, and then the neurological
symptoms began.

"I would be driving on I-95 and forget where I was going -- not a
good thing," said Silverman, 52, of Pompano Beach. It took
several months, but eventually she was diagnosed with chronic
fatigue syndrome, the Rodney Dangerfield of diagnoses.

For years, people who complained of the symptoms --
exhaustion, joint pain, sleep problems, impaired memory,
inability to concentrate -- were dismissed by some doctors as
malingerers or hypochondriacs.

This month, the federal Centers for Disease Control and
Prevention launched a campaign to change that by educating
both patients and physicians that chronic fatigue syndrome, or
CFS, is a mysterious but serious disease sometimes triggered
by a viral infection but with other unknown factors.

CFS affects at least 1 million Americans, but many have not
been diagnosed because most doctors have not been trained to
recognize it, said Dr. William Reeves, chief of the chronic viral
diseases branch at the Centers for Disease Control. Women
are affected at about four times the rate as men, and nonwhite
women are affected at a rate greater than white women, Reeves
said. The age group most affected is 40 to 59.

Reeves, who leads a CDC research group studying the
syndrome CFS, said the illness follows a pattern of symptoms
that can change over time, and that sometimes disappear and
then come back. Spontaneous recovery is rare, he said.
Treatment plans typically involve doctors asking patients which
symptoms most affect their quality of life -- such as
sleeplessness, joint pain, gastrointestinal complaints or
depression -- and prescribing medications to ease those
symptoms.

"We also found that patients who get appropriate care early in
their illness have a significantly better long-term health outcome
than those who do not," Reeves said. "This underscores the
importance of this campaign."

Silverman said public service announcements readied for the
campaign are very effective.

"They show a woman in bed, very tired, and her husband and
kids moving very fast, because that's the way we feel. Life goes
by very fast and we can't keep up with it," said Silverman, who
started an "empowerment group" called PANDORA to help
other sufferers.

Irwin Auster, who facilitates some of the meetings, said he
sought help from a dozen different doctors for his unexplained
physical pain, but none could figure out what was causing it or
give him anything strong enough to take it away. He began
making plans to stop the pain himself.

"I was on the verge of ending my life, by sitting on the tracks and
waiting for the train," said Auster, 64, of Boca Raton. Then he
read an article about Dr. Nancy Klimas, a University of Miami
School of Medicine clinician-researcher, who treats patients with
symptoms like his.

"I do owe her my life," said Auster said. "I really do."

Klimas, who was in Washington for the launch of the CDC
campaign, said research over the past 20 years is beginning to
figure out the biological underpinnings of the syndrome, which
she thinks is badly misnamed.

"If it were called chronic neuroinflammatory disease, then people
would get it," she said. "Up until now nobody's been willing to
change the name, but now there's proof [that inflammation
occurs in the brain.]

"There's evidence that the patients with this illness experience a
level of disability that's equal to that of patients with late-stage
AIDS, patients undergoing chemotherapy, patients with multiple
sclerosis."

said Klimas is president of the International Association for
Chronic Fatigue Syndrome, an organization of medical
professionals and research scientists. Its next that will have its
next research conference will be in January in Fort Lauderdale.

"Historically, it's been the lack of credibility in this illness that has
been one of our major stumbling blocks to making progress,"
Klimas said.

"Over the past 20 years, I've treated more than 2,000 chronic
fatigue syndrome patients. I've seen patients who were angry
and defiant, frustrated, trying to convince their physicians, their
families, their friends that this is a real illness. I've seen other
patients who hid their diagnosis because of the stigma attached,
and suffered in silence."
She and other investigators have shown that different types of
cells within the immune system are abnormal either in number or
their capacity to function in these patients. Klimas said the
biological findings give credence to the disease, but much more
research is needed.

UM researchers, including Mary Ann Fletcher, have just been
awarded new grants from the National Institutes of Health. to
continue their work. One goal is to come up with tests to
diagnose the disease in its different forms, Fletcher said.

"We have fairly good reason to believe that CFS is not a
homogeneous syndrome. There may be several subsets, and it's
important to compare apples to apples. It's possible a treatment
that would work for subset A would not work for subset B,"
Fletcher said.

Klimas and Fletcher are recruiting 150 new patients for a study
that will assess them on days when they feel good and also
when they're feeling particularly bad, so they can compare their
blood samples for differences.

"And if on a bad day they are unable to come to the clinic, we will
send somebody to them to draw their blood," Fletcher said.

Klimas said even though researchers still don't have all the
answers, there are effective treatment strategies that do help
patients.

"There's no single treatment that fixes the illness, but there are
treatments that do help significantly -- increasing the function of
the patient, and allowing them to engage in normal activities of
daily living," she said. "It's critical for patients and their health
care providers to know that there is hope and that we can help."

Nancy McVicar can be reached at nmcvicar@sun-sentinel.com or 954-356-4593.

http://www.sun-sentinel.com/news/local/southflorida/sfl-rxchronicbox24nov24,0,5548043.story?coll=sfla-home-headlines

Chronic Fatigue symptoms
~~~~~~~~~~~~~~~~~~~~
Posted November 24 2006


Difficult Diagnosis



Chronic fatigue syndrome can cause symptoms so severe that
people cannot function normally. There is no simple test to
diagnose the illness, but researchers, including a group at the
University of Miami, are working on that and on how best to treat
the syndrome.

The U.S. Centers for Disease Control and Prevention says
doctors should consider CFS in patients with six months or more
of unexplained fatigue accompanied by other characteristic
symptoms, including:

Cognitive dysfunction, including impaired memory or
concentration.

*  Exhaustion lasting more than 24 hours after physical or mental
exercise.

*  Unrefreshing sleep, joint pain without redness or swelling, or
persistent muscle pain.

*  Headaches of a new type or severity.

*  Tender lymph nodes or sore throat.

Resources

The CDC has more information at www.cdc.gov/cfs. A local
patient group, PANDORA, or Patient Alliance for
Neuroendocrine-immune Disorders Organization for Research
and Advocacy, has a Web site: www.pandoranet.info, or call
954-783-6771.

- Nancy McVicar



http://www.dailyindia.com/show/85589.php/Campaign-to-educate-about-chronic-fatigue Campaign to educate about chronic fatigue
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

ATLANT, Ga., Nov. 24 (UPI) -- U.S. health officials have initiated
a campaign to erase the perception people with chronic fatigue
syndrome are malingerers.


The national Centers for Disease Control and Prevention in
Atlanta opened its information campaign this month to help
educate patients and doctors that chronic fatigue syndrome is a
mysterious but serious disease sometimes triggered by a viral
infection with other unknown factors.

Nancy Klimas, a University of Miami School of Medicine
clinician-researcher visiting the CDC during its campaign
kickoff, said chronic fatigue syndrome is poorly named, based
on 20 years of research.

"If it were called chronic neuroinflammatory disease, then people
would get it," Klimas said. "Up until now nobody's been willing to
change the name, but now there's proof" that inflammation
occurs in the brain.

The CDC estimates CFS affects at least 1 million people in the
United States. Women are affected at about four times the rate
as men, and non-white women are affected at a rate greater
than white women. Symptoms include exhaustion, joint pain,
sleep problems, impaired memory and inability to concentrate.



Copyright 2006 by United Press International


[Return to top]

------------------------------

Date:    Sat, 25 Nov 2006 12:20:57 -0500
From:    "Bernice A. Melsky" <bernicemelsky@xxxxx.xxx>
Subject: RES: Measuring quality of life in rheumatic conditions

Measuring quality of life in rheumatic conditions.

Clin Rheumatol. 2006 Nov 24; [Epub ahead of print]

Walker JG, Littlejohn GO.

Centre for Mental Health Research, Australian National University,
Canberra, 0200, Australia, janine.walker@anu.edu.au.

PMID: 17124551


Musculoskeletal disorders often have associated pain, functional impairment
and work disability, and, not surprisingly, are the most common reasons for
utilizing healthcare resources. Rheumatoid arthritis (RA) and fibromyalgia
(FM) are causes of musculoskeletal pain and disability.

Research indicates that there is a widespread impact of RA and FM on
physical, psychological and social factors in affected individuals, and
thus, outcome measures that encompass multiple aspects of quality of life
are needed.

Generic measures of quality of life identify associations between physical
conditions and mental health and highlight the need to address
psychological functioning to ultimately improve the individuals' quality of
life.

[Return to top]

------------------------------

Date:    Sun, 26 Nov 2006 11:30:48 -0000
From:    Stephen Ralph <stephen.e.ralph@xxxxx.xxx>
Subject: ACT,RES,NOT: The Gibson Parliamentary Inquiry - a Detailed Summary of the Report - 261106

Permission to Repost

Dear All,

Just to let you know that at 10pm this evening (Sunday) I will be posting a
six page summary of the Gibson Inquiry report on my website and to the
MEActionUK group.

View the detailed Summary at 10pm here.... http://www.meactionuk.org.uk/Summary_of_Key_Points_in_Gibson_Inquiry_report.htm Download the locked Adobe .pdf version at 10pm here.... http://www.meactionuk.org.uk/Summary_of_Key_Points_in_Gibson_Inquiry_report.pdf Please note that the web page version runs to around 8 pages due to an
increase in the font size so that it can be easily read online.

As previously mentioned the full Gibson Inquiry report can be read at the
address below at 10pm this evening.... http://www.erythos.com/gibsonenquiry/Report.html Thanks,

Stephen.

N.B. Details of the Gibson Inquiry and why it was set up can be found
here.... http://www.meactionuk.org.uk/The_Gibson_Enquiry.html


[Return to top]

------------------------------

Date:    Mon, 27 Nov 2006 12:56:51 +0100
From:    Jan van Roijen <j.van.roijen@xxxxx.xxx>
Subject: act,med: Demand for research into ME

~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
       >>>> Help ME Circle  <<<<
 >>>> 27 November 2006     <<<<
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~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

http://new.edp24.co.uk/content/news/story.aspx?brand=EDPOnline&category=News&tBrand=edponline&tCategory=news&itemid=NOED26%20Nov%202006%2020%3A42%3A56%3A750 EDP24
The site where Norfolk really matters

Monday, November 27, 2006 | 11:29

NEWS


Demand for research into ME
~~~~~~~~~~~~~~~~~~~~~~


MARK NICHOLLS mailto:mark.nicholls@xxxxx.xx.xx 27 November 2006 00:00


Urgent action and a major increase in research are being
demanded by a hard-hitting inquiry into a debilitating condition
that affects hundreds of thousands of people.
Campaigners hope the findings will change attitudes towards
diagnosing and treating "one of the most contentious illnesses in
medicine today".

A parliamentary group headed by Norwich North MP Dr Ian
Gibson has spent a year looking into CFS/ME (chronic fatigue
syndrome/myalgic encephalomyel-itis), taking evidence from
sufferers, carers and experts.

Patients groups and sufferers welcomed the report, published
today, and voiced the hope that it would herald a new era of
treatment, diagnosis and care for sufferers of an illness which
one Norfolk father of two daughters described as having "taken
their lives away".

Richard Simpson said: "It is a relief that at last a government
body is acknowledging that ME is a severe, incapacitating
illness and that those who suffer from it, as well as their carers
and families, may have their lives completely ruined."

In the East, support groups also hope the impact of the Gibson
Inquiry will halt an erosion of services for sufferers, despite the
financial plight of primary care trusts in Norfolk and Suffolk.

The condition is often not fully recognised or acknowledged but
is estimated to affect 250,000 people nationwide and more than
9,000 in the eastern region alone

The Parliamentary Group on Scientific Research into Myalgic
Encephalomyelitis received thousands of written submissions of
evidence from medical experts, scientists, patients and patient
groups across the UK and internationally, and also held five oral
hearings.

The Gibson Inquiry argues for massive investment in research
into CFS/ME to realign the focus of research and have greater
and more relevant patient involvement in the process.
The report follows the end of the National Institute for Health and
Clinical Excellence (Nice) consultation period on guidelines for
treating CFS/ME which have faced criticism.

Dr Gibson said: "At last there is an inquiry which identifies the
seriousness of CFS/ME. For too long the patient's voice has
been left out of the debate.

"I hope our inquiry will highlight the difficult issues surrounding
this illness and the urgent need further research. One thing is
sure, we have a fantastic opportunity here with our inquiry and
the new Nice guidelines really to begin to recognise this illness
for what it is, to look for causes and new treatments and to really
build consensus amongst doctors and patient groups"

The group undertook the inquiry into CFS/ME after meeting
patient groups in 2005.

The Gibson Inquiry argues for massive investment in research
into biomedical models of the illness but points out that it is also
still unclear whether CFS/ME is one illness with a spectrum of
severity or two separate illnesses.

It also raises concerns over treatments - Cognitive Behavioural
Therapy (CBT), Pacing where patients pace their energy and
Graded Exercise Therapy (GET). These treatments are useful to
people with a number of long-term debilitating illnesses but are
usually proscribed as well as medical treatment not instead of.

The inquiry calls on the government to rectify the historical bias
toward a psychological model of treatment and commission a
"genuinely independent panel of medical experts" consisting of
virologists, immunologists, geneticists, biochemists etc who can
asses the international and UK evidence objectively. It calls on
the Medical Research Council to encourage research.

It also wants treatment centres around the UK, in which the
government has already invested £8.5m, to be involved in
research programmes. In addition it wants the issue of access to
benefits for CFS/ME sufferers to be clarified.

Barbara Robinson, from the Suffolk Youth & Parent Support
Group and a member of the East Anglia ME Patient Partnership,
was pleased the report recognised that ME is prevalent among
teenagers and children.

She said: "Despite local NHS deficit and funding crises, Norfolk
and Suffolk patients hope the Gibson Report will shame local
SHAs and PCT managers into responding."

Mr Simpson, who lives in Norwich and is involved with the charity
Invest in ME, also welcomed the report: "We have been asking
for a long time for very simple, common-sense things such as
the adoption of comprehensive diagnostic criteria and
epidemiological studies. We are delighted that this report
agrees that this is vitally important."


Links:

Suffolk Youth & Parent Support Group: www.suffolkmeandyou.org.uk
Invest in Me: www.investinme.org ~~~~~~

[Return to top]

------------------------------

Date:    Mon, 27 Nov 2006 09:21:23 +0100
From:    Jan van Roijen <j.van.roijen@xxxxx.xx>
Subject: act,med: Invest in ME Newsletter -Gibson Inquiry

~~~~~~~~~~~~~~~~~~~~~~~~~~~~


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~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~



NEWSLETTER


Gibson Inquiry
~~~~~~~~~~~~


Welcome to a Special Invest in ME Newsletter for November 2006.


"This group believes that the MRC should be more
open-minded in their evaluation of proposals for
biomedical research into CFS/ME and that, in order to
overcome the perception of bias in their decisions, they
should assign at least an equivalent amount of funding
(£11 million) to biomedical research as they have done to
psychosocial research. It can no longer be left in a state of
flux and these patients or potential patients should expect
a resolution of the problems with only an intense research
programme can help resolve. It is an illness whose time
has certainly come. "


Thus ends the report from Dr Gibson's Group on Scientific
Research in to Myalgic Encephalomyelitis (ME) – otherwise
known as the Gibson Inquiry. Unfortunately, that time is too late
for some of the victims who have lost their lives to this
devastating illness.

Invest In ME welcomes the broad message of this parliamentary
report and thanks Dr Gibson and his group for all their efforts.
The Inquiry calls for this illness to be given due recognition,
alongside heart disease and cancer. It also calls for ring-fenced
money for bio-medical research as happened with AIDS. ME in
fact affects five times as many people as does AIDS but can
have a much more devastating impact on quality of life. The
Inquiry recommends that research must be made a priority and
suggests that £11 million should be made available for research
to redress the balance in an illness where too much emphasis
has been put on psychological "coping strategies". The Inquiry
accuses the MRC of merely "paying lip-service" to the call for
bio-medical research.

Invest In ME feel it is a relief that at last a government body is
acknowledging that ME is a severe, incapacitating, illness and
that those who suffer from it, as well as their carers and families,
may have their lives completely ruined. We have been asking for
a long time for very simple, common-sense things such as the
adoption of comprehensive diagnostic criteria and
epidemiological studies. We are delighted that this report
agrees that this is vitally important.

This report does not stint in its criticism of the Medical Research
Council and NICE.  Indeed, it warns that NICE should rethink
very carefully one of its recommended treatments, Graded
Exercise Therapy (GET) because there is evidence that in 80%
of M./E. sufferers there is diastolic cardiomyopathy. Invest in ME
has warned NICE only last week that by recommending GET
they would put patients lives at risk, and risk Judicial Review.
We can only hope that NICE will take notice.

Invest In ME also welcomed the call for an independent scientific
committee to be established to oversee all aspects of research,
as well as an inquiry into the vested interests of insurance
companies whose advisors also act as advisors to the DWP. Dr
Gibson's Group recommends an investigation of these vested
interests by a standards committee because too often, it states,
patients have to live with the double burden of fighting for both
their health and their benefits.

Invest in ME now believe that we must  move forward and ensure
that people are correctly diagnosed with this illness and that
doctors and scientists treat patients knowing and accepting that
they have a genuine and serious illness.

Invest in ME now ask that the government and MRC take this
opportunity and work with the ME community and biomedical
researchers to ensure that this illness can be understood, that
proper biomedical research is funded and that archaic and
unjust perceptions by government departments, sections of the
health service and those responsible for deciding funding
strategy are once and for all discarded.

This is an opportunity to benefit patients and find a cure for this
illness.

Invest in ME ask the government to ensure that this opportunity is
not lost and that yet another generation of UK citizens is not
abandoned.



Some highlights from the Inquiry report -

o The Group calls for a further Inquiry into the Scientific Evidence
for CFS/ME by appropriately qualified professionals. This Inquiry
should be commissioned by government undertaken by an
independent panel of scientific and medical experts, including
virologists, immunologists, biochemists etc who can objectively
assess the relevance and importance of the international
scientific data.

o The NICE draft guideline makes little reference to the
possibility of viral investigation in ME patients.

The Group recommends, firstly, that these studies and others
like them must be examined by an independent scientific
advisory committee such as the one proposed above. Secondly,
many of the studies we received were conducted on a very
limited scale and their findings need to be confirmed or refuted
by large scale investigation. Until this happens, the field will
remain confused.

o Provision of resources for biomedical research is urgently
needed. The committee would like to see a similar arrangement
to the AIDS programme funded previously by the MRC.

o The MRC should do more to encourage applications for
funding into biomedical models of ME.

o The Groups feels that patients with CFS/ ME, which is often an
extremely long term condition, should be entitled to the higher
rate DLA. The sooner there is a biomedical model of
assessment for this illness the better.

o There have been numerous cases where advisors to the DWP
have also had consultancy roles in medical insurance
companies. Particularly the Company UNUM Provident. Given
the vested interest private medical insurance companies have in
ensuring CFS/ME remain classified as a psychosocial illness
there is blatant conflict of interest here. The Group find this to be
an area for serious concern and recommends a full investigation
of this possibility by the appropriate standards body. It may even
be that assessment by a medical 'expert' in a field of high
controversy requires a different methodology of benefit
assessment

o ME and CFS have been defined as neurological illnesses by
the World Health Organisation. Various clinical and
epidemiological research studies in countries around the world
have suggested CFS/ME to have a biomedical cause. The UK
has not been a major player in the global progress of biomedical
research into CFS/ME. Although some interesting biomedical
research has been done in the UK precedence has been given
to psychological research and definitions. The Group believes
the UK should take this opportunity to lead the way in
encouraging biomedical research into potential causes of
CFS/ME.

o No representative who appeared at the Oral Hearings
proposed CFS/ME was entirely psychosocial. So why has this
model taken such a prominent role in the UK?

o The MRC should call for research into this field recognising the
need for a wide ranging profile of research. The committee
would like to see a similar arrangement to the AIDS programme
funded previously by the MRC

o It is recommended that ME be recognised as one which
requires an approach as important as heart disease or cancer.
There is no compelling evidence it is a purely psychosocial


The challenge now will be to harness the momentum generated
by this Inquiry to  proceed with proper funding for biomedical
research and a will to find a cure for this illness.

More details of the Gibson Inquiry report can be found here.

http://www.investinme.org/Article-009%20Gibson%20inquiry%20respice%20finem.htm

Contacts:

Inquiries to Invest in ME - info@xxxxx.xxx

To order our plain text newsletter send an email to info@xxxxx.xxx and entitle your email Plaintext Newsletter.

link to the home page. Read more on RSS here: http://www.investinme.org/RSS%20details.htm Invest in ME uses Paypal

Support ME Awareness - http://www.investinme.org/

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Date:    Mon, 27 Nov 2006 14:43:37 +0100
From:    Jan van Roijen <j.van.roijen@xxxxx.xx>
Subject: med,res: The UK Parliament -Scientific Research into ME

~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
       >>>> Help ME Circle  <<<<
 >>>> 27 November 2006     <<<<
Editorship : j.van.roijen@xxxxx.xx
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

http://www.erythos.com/gibsonenquiry/ The United Kingdom Parliament


Group on Scientific Research into
Myalgic Encephalomyelitis (ME)


Members: http://www.erythos.com/gibsonenquiry/Members.html

Hearings: http://www.erythos.com/gibsonenquiry/Hearings.html

Presentation Documents: http://www.erythos.com/gibsonenquiry/PresDocs.html

Report: http://www.erythos.com/gibsonenquiry/Report.html " The Gibson Inquiry "

Terms of Reference

The Group on Scientific Research into ME has been established
to assess the progress of scientific research on ME since the
publication of the Chief Medical Officer's Working Group Report
into CFS/ME in 2002.  In particular the Group has been
established to -

*  increase public understanding of scientific research into
ME/CFS

  * evaluate progress in the development of a full program of
research into ME/CFS

*  identify research and funding requirements in establishing the
cause of ME/CFS


The Group will publish a report of its findings and present it to
the Government and its Ministers.  It will also be for public
dissemination and will be available on this web site.  It is
planned to be completed during November 2006.  It is the aim of
Dr Ian Gibson MP, Group Chair, that this report will both
stimulate public debate on the subject of ME and act as a
catalyst for increased funding of research into this condition.

````````

The Inquiry Report has now been published

Please refer to the Report page http://www.erythos.com/gibsonenquiry/Report.html ````````

Some Background Information

The CMO's 2002 Working Group Report on CFS/ME is
available here:  CMO's Report 2002 http://www.erythos.com/gibsonenquiry/Docs/CMOreport.pdf This document is available only in "portable document format",
as a PDF file, for which 'Adobe Reader' software is required.  If
you do not already have it, you can download a free copy of the
latest version from Adobe's web site.  Just click on their logo to
the right: http://www.adobe.com/products/acrobat/main.html The file is large - 320Kb - so if you use a slow-speed Internet
connection (e.g. dial-up through a 56Kb modem), please be
patient and give it time to download.


Group Chair Dr Ian Gibson MP gave the keynote address at
Invest in ME's The ME Conference 2006 on 12 May 2006
(during ME Awareness Week) reviewing the current state of
clinical diagnosis, research trends and educational support.  In
his presentation Dr Gibson detailed the raison d'étre for an
examination of scientific research into ME since the CMO's
2002 Report, and summarised the Group's progress to date with
what is commonly referred to as "The Gibson Inquiry".

A 4-disk DVD boxed set covering the whole Conference is
available from Invest in ME; visit their web site at www.investinme.org for further information.

Please direct all enquiries/comments regarding
the Group or the contents of this web site to -

Post  Dr Ian Gibson MP
House of Commons
London SW1A 0AA

Telephone  0207 219 1100

Fax  0207 219 2799

Email gibsoni@xxxxxx.xx Disclaimer

This is not an official Parliament web site.  It is the sole
responsibility of the GSRME.

While every care has been taken to ensure that the information
contained in this web site is both accurate and up-to-date, no
liability to any party is accepted for loss or damage incurred by
reliance placed on the information contained in this website or
through omission or errors, howsoever caused.



Site last updated 26 November 2006

Optimised for MS Internet Explorer v5.5 and later, Java-enabled,
at 800×600 pixels resolution

All text, graphics and other resources
© 2000-2006  Unauthorised reproduction prohibited
All rights reserved

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Date:    Mon, 27 Nov 2006 15:56:19 -0500
From:    Fred Springfield <fredspringfield@xxxxx.xxx>
Subject: RES: Comments on Guest Editorial, "Chronic Fatigue Syndrome,  Mast Cells, and Tricyclic Antidepressants"

[Note: See http://www.cfids-cab.org/rc/Theoharides.pdf for the editorial discussed here in PDF.]


Comments on Guest Editorial, "Chronic Fatigue Syndrome, Mast Cells, and
Tricyclic Antidepressants"
[Letter to the Editors]

Journal: Journal of Clinical Psychopharmacology: Volume 26(6) December 2006
p 690

Author: Hanna, Eleanor Z. PhD

Affiliation: Associate Director for Special Projects and Centers, Office of
Research on Women's Health, Chair Trans-NIH Working Group for Research on
Chronic Fatigue Syndrome Bethesda, MD http://orwh.od.nih.gov/cfs.html , hannae@od.nih.gov To the Editor:
Your December 2005 guest editorial, "Chronic Fatigue Syndrome, Mast Cells,
and Tricyclic Antidepressants,"1 was most appreciated by those of us at the
National Institutes of Health (NIH) who have been working to invigorate
research on chronic fatigue syndrome (CFS). Dr. Theoharides et al have done
a marvelous service by suggesting the importance of brain mast cells as a
route of exploration into the pathophysiology and treatment of CFS. I hope
his article encourages further exploration of this path by others and by
his own distinguished team of researchers.

Unfortunately, 8 citations (references 1, 4-9, and 18) reference the
publication from which they were taken without including its title.
National Institutes of Health Publication No. 04-5497 is entitled
Neuroimmune Mechanisms and Chronic Fatigue Syndrome: Will understanding
central mechanisms enhance the search for the causes, consequences, and
treatment of CFS? This report summarizes a workshop on this topic that was
cosponsored by the NIH Office of Research on Women's Health and the
Trans-NIH Working Group for Research on Chronic Fatigue Syndrome in June
2003. The report is available on-line, and copies may be ordered through http://orwh.od.nih.gov/pubs/pubs_list.html .

Your subscribers might also be interested to know that the NIH invites
innovative applications to our standing program announcement for research
on chronic fatigue syndrome (PA-05-030 available at http://grants.nih.gov/grants/guide/pa-files/PA-05-030.html ) through 2008.

ACKNOWLEDGMENT
Thank you for giving prominence to Dr. Theoharides' editorial and for
sharing the information on the NIH CFS research opportunities with your
readers.

Eleanor Z. Hanna, PhD
Associate Director for Special Projects
and Centers, Office of Research on
Women's Health, Chair
Trans-NIH Working Group for Research on
Chronic Fatigue Syndrome
Bethesda, MD http://orwh.od.nih.gov/cfs.html hannae@od.nih.gov REFERENCE
1. Theoharides TC, Papaliodis D, Tagen M, et al. Chronic fatigue syndrome,
mast cells, and tricyclic antidepressants (Guest Editorial). J Clin
Psychopharmacol. 2005;25:515-520.

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End of CO-CURE Medical & Research Posts Only Digest - 20 Nov 2006 to 27 Nov 2006 (#2006-53)

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