IACFS/ME International Biennial Conference:

Translating Evidence into Practice

September 22-25, 2011 Ottawa, Ontario, Canada

Linda Carrington attended the IACFS International ME/CFS Conference as a patient and represented CFS Solutions of West Michigan. The following notes represents her best understanding of the very technical, scientific and medical information presented at the conference.

2011 CFS Solutions of West Michigan

The International Association for CFS/ME

IACFS/ME Mission: to promote, stimulate, and coordinate the exchange of ideas related to CFS, ME (encephalomyelitis/encephalomyopathy), and fibromyalgia research, patient care, and treatment. The IACFS/ME periodically reviews the current research and treatment literature and media reports for the benefit of scientists, clinicians, and patients. The IACFS/ME conducts and participates in local, national, and international scientific conferences in order to promote and evaluate new research and to encourage future research ventures and cooperative activities to advance scientific and clinical knowledge of these illnesses.

Biennial Conference
The IACFS/ME hosts an international conference every two years to share and present the latest ME/CFS information and research from around the world. This years conference was cohosted by Canadas National ME/FM Action Network.

See: http://www.mefmaction.com/

Conference Location
Welcome to Ottawa, Canadas Capital City!

Conference Format
Patient Day/Concurrent Professional Workshops Faculty Oral Presentations Poster Presentations Banquet & Awards

Patient Day Highlights

Thursday, Sept. 22, 2011

How I Help CFS/ME Patients in Canada

Dr. Byron Hyde, MD, Nightingale Research Foundation & Private Practitioner, Ottawa, Ontario
Author of Missed Diagnosis & The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome. CFS vs. ME See: http://www.nightingale.ca/index.php?target=whatis Recommends patients who have ME- and CFS- type illnesses be subjected to a complete personal and family history to map the genetic and historical causes of their illnesses. Bottom Line: Patients illness can only be understood if a complete total body mapping is performed on all systems and organs. Need full thyroid workup: T2, T3, T4, plus ultrasound to see if thyroid volume is normal.

See: http://www.nightingale.ca/

Patient Day Highlights

Thursday, Sept. 22, 2011

New Developments in Possible Causes of ME/CFS

Dr. Anthony Komaroff, MD, Harvard Medical School:
o o o o Need to ask two questions: 1) What is the cause of the symptoms? 2) What is causing the cause of the symptoms?? All symptoms are experienced in the brain, but not always caused by the brain. Cytokines are responsible for many of the symptoms, signaling a probable immune activation. Recent studies indicate clear abnormalities that can distinguish CFS from other problems such as depression, including:

MRI, SPECT, cognition, autonomic dysfunction, sleep disorders, neuroendocrine system, EEG in unmedicated CFS patients, proteomic markers in spinal fluid, lactate in spinal fluid, distinctive biomarkers after exercise, immune system studies, energy metabolism, viruses and CFS.
Bottom Line: Causes of symptoms reside in the brain and the gut, are likely due to immune activation, can be related to energy metabolism, and there is most likely a genetic predisposition for the body to react to infection and stressors with the development of CFS.

For specifics, see presentation at: http://www.masscfids.org/videofiles/Komaroff/Komaroff.html

Patient Day Highlights

Thursday, Sept. 22, 2011

What Helps People Cope with ME/CFS: Part One

Leonard A. Jason, PhD, Professor Director of the Center for Community Research at DePaul University in Chicago, DePaul University, Chicago, Il
Step One: Managing your Energy (battery) Levels o Perceived vs. expended energy o Social support o Goal setting Step Two: Better Sleep o Wind down! Dampen mental over-activity with at least 30-minutes of formal relaxation activities before bed o Handle wake-ups appropriately Step Three: Identify, Handle, and Resolve Anger o Two types: Self-directed and other-directed o Minimize expectations of support o Accept, accept, accept. Bottom Line: Those with normal cortisol levels at baseline are more likely to improve using these techniques. Healthcare professionals need to be able to help you with managing your energy levels. Biomarkers need to be included in clinical trials. Non-pharmacological interventions are used with other diseases, need to include them in CFS patients.

Patient Day Highlights

Thursday, Sept. 22, 2011

What Helps People Cope with ME/CFS: Part Two

Fred Friedberg, PhD, President IACFS/ME, Research Associate Professor, Stonybrook University, Stonybrook, NY
Key to Improvement = A Balanced Life (regardless of illness severity) Behavioral Interventions:
o o o o Balance Activity Levels Relaxation Routines Managing Emotions Social Support

Bottom Line: Healing vs. Cure. Accept that a cure is unlikely. But you CAN achieve healing if your goal is to improve how you feel and function.
New Study Announcement: Dr. Freidberg is seeking participants for an upcoming behavioral study of CFS patients. Details to be announced. If interested, email: Fred.Friedberg@sbumed.org.

Patient Day Highlights

Thursday, Sept. 22, 2011

Fibromyalgia: Current Status

Roland Staud, MD, M.D., F.A.C.P, F.A.C.R. Professor of Medicine, University of Florida, Gainesville, FL
New Diagnostic Criteria for Fibromyalgia: No Trigger Points Required!
o o o Widespread Pain Index Symptom Severity Survey General Somatic (physical) Symptoms Variable between individuals and varies with time, age, tissue trauma Anxiety increases transmissions, reduced anxiety decreases transmissions

Pain Signal Transmission

o o

Grey matter volume in brain decreases with chronic pain. Reversible? New Pain Treatment: Vibration Analgesia application of vibrating, non-painful stimulation to reduce pain sensitivity.

Bottom Line: Fibromyalgia affects an estimated 10 million people in the U.S. and an estimated 3% to 6% of the population worldwide, according to National Fibromyalgia Association. It is estimated the number may double or even triple with new diagnostic criteria. Research continues.

Patient Day Highlights

Thursday, Sept. 22, 2011

Legal Aspects of Disability

Hugh R. Scher, Barrister and Solicitor, Toronto, Canada
The process of applying for disability and getting it is similar no matter where you live. Doctor, healthcare providers, co-workers, family, and disability assessors need to understand all the specifics of your job or former job, including how much time was spent doing each and every task. Need to know how your specific disability precludes you from not only doing the task of your old job, but also of doing any job (ex: reliability uncertain, chronically needing time off, not being able to carry workload, no cure, etc.) Outline in detail your education, training and experience. Provide a transferrable skills assessment how do all of your work and life skills translate into other possible jobs, or not. State clearly what would happen to you, in general or specifically, if you had to perform the specific duties of your job. Outline each duty in terms of cause and effect.

Bottom Line: Doctors, assessors, attorneys and others need to ask the right questions so the answers will comprise a useful response. Currently used questionnaires are not designed for complicated illnesses like CFS. Not only do you have to provide useful answers, you must also provide the questions that will elicit these helpful answers. You need an attorney who is familiar with labor law, disability law, and the specifics of your illness.

Patient Day Highlights

Thursday, Sept. 22, 2011
Latest Research on the Pathophysiology of ME/CFS
Nancy Klimas, MD, Immediate Past President IACFS/ME, Professor of Medicine, Microbiology, Immunology and Psychology, University of Miami, Miller School of Medicine and Miami VA Medical Center & Chief Medical Officer, Chronic Fatigue & Immune Disorders Research and Treatment Center (Chronic Fatigue Center). See: http://www.cfsclinic.com/index.html
About 30% of Gulf War Vets (1990-91) came back with something almost identical to CFS, prompting exciting research into the differences and similarities. Research sheds light on the fact that CFS patients are not one homogenous group. Subgroups are important to recognize and understand. Process: Genetic Predisposition + Trigger (event, infection, toxin) + Mediators (immune, endocrine, neuroendocrine sleep, psychosocial, viral reactivation abnormalities) = CFS & GWI Triggers: o Severity of trigger predicts odds of getting CFS o Triggering event could have changed the landscape of your immune system permanently o Trigger allows the reactivation of other latent viruses o Trigger could still be going on Mediators: The key to persistent illness. o Shared mediator across interconnected systems drive persistent illness o Natural Killer and Cytotoxic T-cells: look for cells to attack, poke holes in them, insert proteins that kill them off o CFS patients are genomically different than GWI patients

Bottom Line: Gulf War Illness studies, in conjunction with CFS studies, will continue to shed light on the processes involved in each and will hopefully lead to more targeted treatments for various subgroups. Nancys new clinic is open and ready for patients. See above link for details.

Patient Day Highlights

Thursday, Sept. 22, 2011

Disease and Discovery: What Have We Learned?

Annette Whittemore, Founder and President, Whittemore Peterson Institute for Neuro-Immune Disease, Reno, Nevada The uproar over XMRV findings and the inability to replicate the initial studys findings indicate that the WPI is challenging the status quo, a good thing for research in the long run. The goals and projects of the WPI are being reviewed. They are not married to XMRV, they are dedicated to getting answers. Learning from failure makes research stronger Tenacity of all the researchers is impressive Collaborations create faster results More funding needed. Donate to ANIDA (Advocates for Neuro Immune Disease Awareness) at http://www.anida.co/ Bottom Line: Still working to find an ending to the sentence, CFS/ME is _______.

Patient Day Highlights

Thursday, Sept. 22, 2011

Effective Management of Activity Intolerance

Staci R. Stevens, MA, Vice President IACFS/ME, Founding Director, Fatigue Lab, University of the Pacific, Stockton, CA
Two basic energy systems: (in normal people these two work together.)
o
o

Short-term (anaerobic). Anaerobic, short-term exercise that does not require the body to use oxygen to produce energy. The energy in this system is resting in your muscles for emergency use. Long-term (aerobic). In CFS the aerobic system is essentially broken, and it can take just 30-90 seconds of moving (or even just sitting up), to shift out of anaerobic and into aerobic mode, which causes fatigue.

Use the energy system that works! Train your anaerobic system so you can do the things you want to.
o o o o Know your anaerobic threshold heart rate (get a VO2 Max test) Keep an activity log and use your anaerobic threshold heart rate combined with a perceived exertion scale Exercise should be done in short bursts followed by rest Know when to stop. The goal is to feel better, not worse

Bottom Line: You can combine your knowledge of your own bodys limits, short bursts of exercise combined with rest periods for deep breathing and stretching, a heart rate monitor, and an activity log to track your progress to improve your life, do more of the things you enjoy, and have fun doing it.
Listen and view Stacis presentation from the 2008 IACFS Conference at: http://podcast.med.ucalgary.ca/groups/cfs/weblog/3194a/Therapeutic_Exercise_and_Activity_in_CFS_ME.html

Patient Day Highlights

Thursday, Sept. 22, 2011

Tools to Stop Crashing, Start Pacing & Planning Your Health

Alison Bested, MD, Heamatological Pathologist, Medical Specialist Liason, Environmental Health Clinic, Womens College Hospital, Community and Family Medicine, Faculty of Medicine, University of Toronto, author of Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia.
Weed & Seed Approach: o Weed out known aggravators, sedentary habits, stress, junk food, exposure to chemicals, poor sleep habits. o Plant Seeds of Health: Good sleep hygiene, appropriate exercise, periods of rest pacing, support. Rest Means REST: Lying down, eyes shut, meditating, or sleeping. Thats IT. No reading, no TV, no computer, and it MUST be lying down. Limited Energy: Quickly used up by physical, mental, and emotional stress. You can only use it once. Take control. Put your Body in the Pilots Seat: Put your brain in the co-pilots seat. Out brains tend to want to hijack our bodies. Ask Body, in this moment, what do I need? How many minutes can I do it? Listen and respond to what it is telling you. Wear a timer around your neck and use it! Works for both rest and activity times. Bottom Line: Listen to your body, listen to common sense, use your tools! Life is good.

Patient Day Highlights

Thursday, Sept. 22, 2011

Differentiating ME/CFS and Fibromyalgia from Psychiatric Disorders

Eleanor Stein, MD, private practice psychiatrist, Clinical Assistant Professor, Department of Psychiatry, University of Calgary
Diagnostic and Statistical Manual of Mental Disorders (DSM-5) to be published in May 2013 Classification Matters: If we make the wrong assumptions, we come up with the wrong treatments. Growing evidence that CFS is not the same as any psychiatric definition. Rates of psychiatric disorders in ME/CFS are similar to rates of other people with chronic medical conditions. The rate of personality disorders is not elevated. If one cant find objective evidence, it is tempting to think Its all in your head. This is not a good enough reason to assume this.

Bottom Line: Use of DSM-V somatic symptom classifications depends too much on vague terms and the opinion of practitioner and should not be used.

Patient Day Highlights

Thursday, Sept. 22, 2011

Advocacy
Lydia Neilson, Founder and Chief Executive Officer at National ME/FM Action Network, Canada

Be patient. Be persistent. And always, always ask: What is in it for them?

See: http://www.name-us.org/DefintionsPages/DefinitionsArticles/ConsensusDocument%20Overview.pdf

Patient Day Highlights

Thursday, Sept. 22, 2011

Reception & Movie Debut: Voices from the Shadows

Official Selection - Mill Valley Film Festival - October 8th, 2011
Co-Directed/Produced by Josh Biggs & Natalie Boulton; Music by David Poore

A compassionate and moving expos, bearing witness to the devastating consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illnesses of the

21st Century.
Hidden away in darkened, silent rooms, for years or even decades, are men, women and children, suffering a cruel and invisible injustice. Although shockingly ill, many are disbelieved, denigrated and blamed, suffering medical neglect and sometimes even abuse by professionals. This intimate and revealing film bears witness to these forgotten lives and abuses. It is an intensely moving, and disquieting film by two patient advocates/carers. It reveals the love, determination and fortitude of five sufferers and their families as they strive to surmount a desperate situation. Your film is wonderful....This is a must see film. The patients and their carers are heroes, and their courage and life-affirming stories challenge us to actVoices from the Shadows is the most important and significant film on pediatric ME that has ever been produced.
Leonard Jason, Director, The Community Research Center, DePaul University, Chicago

See: http://www.facebook.com/VoicesfromtheShadows and http://voicesfromtheshadowsfilm.co.uk/

Part Two: Professional Conference

Thursday, September 22 Sunday, September 25, 2011

Abstracts for the Professional Conference Sessions are available for review. See Conference Syllabus booklet for session description and presenter contact info. _____________________ Both patient and professional conference sessions were videotaped and will be available for order soon through DigiVision Media.
Call, Email, or Fax to order. Tel: 208-667-0226 Fax: 208-667-6834 Email: orders@instatpaes.com Online: www.DigiVisionMedia.com/IACFS Cost: $149-$349

Concurrent Professional Workshops

Thursday, Sept. 22, 2011

Topics: How To Apply for Grants

Treating Sleep, Pain, and Fatigue in ME/CFS Patients

Pediatrics and CFS/ME Fibromyalgia Theory and Practice

Behavioral Assessment and Treatment of ME/CFS

Exercise Intolerance: Guide to Management and Treatment Fibromyalgia Assessment and Treatment

Translating Evidence into Practice: General Sessions

Friday, Sept. 23, 2011

Topics: Gammaretroviruses of Mice and their links to Prostate Cancer and CFS/ME Virology Research:
o Blood XMRV Scientific Research Working Group: Latest Findings o Detection of Anti-XMRV Antibodies in Serum of CFS Patients and Healthy Blood Donors in Belgium o Detection of MLV-Like Gag Sequences in Blood and Cell Lines Incubated with Plasma from CFS Patients and Controls o Chronic Fatigue, Non-Restorative Sleep, Musculoskeletal Pain, and Depression in a Disabled Cohort of Survivors of Acute SARS Viral Disease

Translating Evidence into Practice: General Sessions

Friday, Sept. 23, 2011

Topics:
Virology Research and Review
o Role of the Immune Response in CFS o The Case FOR Human Gamma Retroviruses in CFS/ME o The Case AGAINST Human Gamma Retroviruses in CFS/ME

Treatment Advances
o Health/Performance and Response Status of XMRV/pMRV Antibody Positive vs. Negative Chronic Fatigue Subjects in a Phase III Clinical Trial o Rifampin Augments the Effects of Oxymatrine/Equilibrant in Patients with ME/CFS o Brief Self-Management of UCF/CFS in Primary Care: A Randomized Trial

Translating Evidence into Practice: General Sessions

Friday, Sept. 23, 2011

Topics: Fibromyalgia: Are Tender Points Necessary? A Debate

o Tender Points are Important
o Tender Points are Unnecessary

Diagnosing CFS/ME: Difficult Clinical Cases Standardizing Data Collection in CFS/ME CASA (Collection Aggregation, Storage & Analyses) Project

Translating Evidence into Practice: General Sessions

Saturday Sept. 24, 2011

Topics:
Case Definitions for Research and Practice
o The New International Consensus Criteria for ME: Content and Context

o Contrasting Case Definitions

o Data Mining o Pathways to Pathogenesis: Standardized Measures of CFS/ME Illness Domains

Identifying Abnormalities in CFS/ME: The Importance of Exercise Challenge

o Exercise Testing to Quantify Effects of Fatigue on Functional Capacity in Patients with CFS o The Importance of Exercise Challenge

Translating Evidence into Practice: General Sessions

Saturday Sept. 24, 2011

Topics: The Latest Research in Immunology

o Natural Killer Cell Number and Function in a Prospective Cohort of Adolescents with CFS and Controls Following Mononucleosis o Disparities in Innate and Adaptive Immune Cell Activities in Chronic Fatigue Syndrome o Longitudinal Assessment of Adaptive Immune Regulation in Chronic Fatigue Syndrome o Promoter DNA Methylation and Expression of Perforin in CFS and Controls

Translating Evidence into Practice: General Sessions

Saturday Sept. 24, 2011

Topics:
New Developments in Pediatric ME/CFS
o Linking Lymphocyte Metabolites with Clinical Course in Post-Infections Fatigue o A Trail for Prevention of CCFS Onset from the Viewpoint of Sleep Issue o Therapeutic Outcome by Two-Months Intensive Sleep-Wake Circadian Rhythm Treatments in Japanese Children and Adolescents with Chronic Fatigue o What is the Natural History of Chronic Fatigue Syndrome in Young People?

New Developments in Epidemiology

o Natural History o CFS Knowledge and Illness Management Behavior Among US Healthcare Providers and the Public o Profile of the Patient With Chronic Fatigue Syndrome; Experience with a Population-Based Registry

Translating Evidence into Practice: General Sessions

Sunday Sept. 25, 2011

Topics: Research Developments in Genomic and Genetics

o Expression Patterns of miRNAs in Lymphocytes in Patients with Chronic Fatigue Syndrome o Pathway-Focused Genetic Evaluation of Immune and InflammationRelated Genes In CFS o Gene Expression of Sensory Ion Channels, Adrenergic Receptors, and Cytokines: Potential Biomarkers for CFS and Fibromyalgia o Gene-Exposure Interactions in the Etiology of Gulf War Illness: Evidence of Increased Vulnerability to Neurotoxicants in Identifiable Veteran Subgroups o Comparing Gene Expression Patterns in CFS and GWI Using the Kerr ME/CFS Platform

Translating Evidence into Practice: General Sessions

Sunday Sept. 25, 2011

Topics:
Advances in Brain and Neuroendocrine Functioning
o Regional Grey and White Matter Volumetric Changes in CFS/ME: A VoxelBased Morphometry 3T MRI Study o Evidence for Reduced Aldosterone in Persons with Chronic Fatigue Syndrome o Interaction of Self- and Illness-Related Cognitive Processing in the Right Anterior Insula of CFS Patients: An fMRI Study o Decreased Basal Ganglia Activation in CFS Subjects is Associated with Increased Fatigue o Assessment of Regional Cerebral Blood Flow in CFS Using Arterial Spin Labeling MRI

IACFS/ME Clinical Practice Manual: Developing a New Primer

Breakout Sessions

Mainstreaming ME/CFS Researchers and Healthcare Providers Into our Peer Communities Overview of the Coalition 4 ME/CFS.org Proposal to Reclassify CFS on ICD-9-CM and ICD-10-CM

Banquet and Awards

Saturday Sept. 24, 2011

Keynote Speaker: Byron M. Hyde, MD

Ten Important Facts Derived from ME/CFS History that Can Improve ME/CFS Research

Awards:
Governor Rudy Perpich Memorial Award: Leonard Jason, PhD Nelson Gantz Clinician Award: Nancy Klimas, MD Junior Investigator Award: Ekua W Brenu, Phd Candidate Research Excellence Award: Mary Ann Fletcher, PhD Special Service Award: Lydia Neilson, National ME/FM Action Network, Canada Special Service Award: Ellen Piro, Norwegian ME Association

Part Two: Professional Conference

Thursday, September 22 Sunday, September 25, 2011

Abstracts for the Professional Conference Sessions are available for review. See Conference Syllabus booklet for session description and presenter contact info. _____________________ Both patient and professional conference sessions were videotaped and will be available for order soon through DigiVision Media.
Call, Email, or Fax to order. Tel: 208-667-0226 Fax: 208-667-6834 Email: orders@instatpaes.com Online: www.DigiVisionMedia.com/IACFS Cost: $149-$349