The IACFS/ME Conference in Ottawa: Sept 22-25, 2011

[Cort]

2011 Ottawa, Ontario, Canada

PROFESSIONAL AGENDA

Agenda
September 22, 2011

Professional Workshops for Physicians and Healthcare Professionals
Morning Session: 9:00 am- 12:00 pm

Workshop 1
How to Apply for Grants
The National Institutes of Health (NIH), part of the United States Department of Health & Human Services, is the primary U.S. Federal agency for conducting and supporting medical research. To realize its mission of extending healthy life and reducing the burdens of illness and disability, NIH funds grants that support the advancement of fundamental knowledge about the nature and behavior of living systems. As you plan, write and then submit an NIH application for a grant, it is important to know some important submission basics, such as what type of application will be needed (paper or electronic) and which forms are necessary, as well as links to contacts, important deadlines, a general timeline, and guidelines for tracking your application through the process. This Workshop will provide a useful overview of the NIH granting application process. Attendees will receive information on both the grant writing as well as how grants are reviewed to determine scientific and programmatic merit. Award fiscal monitoring, reporting and compliance issues will be discussed. Investigators are encouraged to review the NIH website for the fundamentals of grant writing prior to attending the workshop (http://grants.nih.gov/grants/grants_process.htm).

Dennis F. Mangan, Ph.D.
Chair, Trans-NIH ME/CFS Research Working Group, Office of Research on Womens Health, U.S. National Institutes of Health
Cheryl L. McDonald, M.D.
Medical Officer, National Heart, Lung and Blood Institute, U.S. National Institutes of Health


Workshop 2
Treating Sleep, Pain and Fatigue in ME/ CFS Patients
Two experienced clinicians will discuss current issues in the management of PWCs (Persons with CFS or FM). Using a combination of brief lectures and actual cases, Drs. Bateman and Lapp hope to stimulate engaging discussions about the practical management of sleep, pain, fatigue, orthostatic problems, maladaptive behaviors, and 'whatever.' Attendees are encouraged to bring their questions to the workshop."
* This workshop will be repeated in the afternoon session

Charles W. Lapp, M.D.
Associate Clinical Professor, Duke University Medical Center, Charlotte, NC
Medical Director, Hunter-Hopkins Center, Charlotte, NC
Lucinda Bateman, M.D.
Adjunct Clinical Faculty, Departments of Anesthesiology, Family & Preventive Medicine, and Internal Medicine, University of Utah, Salt Lake City, UT
Director, Fatigue Consultation Clinic, Salt Lake City, UT

Workshop 3
Pediatrics and CFS/ME
Workshop will provide an Introduction and brief description of CFS/ME in Paediatrics and will cover an overview of paediatric case definitions and other diagnostic issues: outline of illness severity, principal symptoms, relationship to puberty and immunisations, the importance of setting up a paediatric consultation and getting the parents involved. Attendees will walk through the patient evaluation process focusing on making the diagnosis taking into consideration such factors as history, psychological evaluation, physical examination, laboratory testing and other investigations. Discussion on diagnosis leads to the development of a Management / Treatment Plan with considerations for Lifestyle (including exercise, stress and dietary approaches), Addressing specific symptoms (sleep, pain, orthostatic intolerance etc.), Medication options, Counselling (child and family). Children diagnosed with CFS/ME will have special Educational needs such as Home-schooling, part-time attendance, material for teachers, travel and coping with exams and special social needs such as Social needs, interaction with peers, sports, other activities and the use of Parent and peer support groups to help cope. Discussion will conclude with a discussion on psychological effects on paediatric patients and their families, masked depression, suicide risk, isolation and family dynamics and conclude with a discussion of related conditions such as fibromyalgia, migraine, polycystic ovaries, and irritable bowel

Rosamund Vallings, MNZM, MB BS
Board Member, IACFS/ME
Family Physician, Howick Health and Medical Clinic, Auckland, New Zealand

Teruhisa Miike, M.D, Ph.D.
Board Member, IACFSME
Chief, Hyogo Childrens Sleep and Development Medical Research Center, Hyogo, Japan

Workshop 4
Fibromyalgia Theory and Practice
The workshop will begin with an overview of the latest research findings in fibromyalgia and related chronic pain states, A particular focus will be on research suggesting that there are different underlying mechanisms of pain that will respond to different types of treatment. Attendees will be taught how to perform a clinical assessment that determines the underlying mechanism(s) of pain that an individual is experiencing, and then base treatment on those underlying mechanisms. The advantages of using combined pharmacological and non-pharmacological approaches will be emphasized. This approach moves towards personalized analgesia for the chronic pain

Daniel J. Clauw, M.D.
Professor of Anesthesiology, University of Michigan, Ann Arbor, MI

12:00 pm - 1:30 pm
Lunch Break/Visit Exhibits
Note: Lunch is Self Pay from hotel and local restaurants

Afternoon Session: 1:30 pm 4:30 pm


Workshop 5
Behavioral Assessment and Treatment of ME/CFS
In this introductory workshop on CFS and FM, participants will learn about practical methods of behavioral assessment and individualized treatment strategies. Our approach consists of self-management focused interventions and non-pharmacologic strategies for clinicians that can offer realistic hope for improvement in these patients. This workshop will benefit clinicians who work with CFS and FM patients.

Fred Friedberg, Ph.D.
President, IACFS/ME
Research Associate Professor, Stonybrook University, Stonybrook, NY

Leonard Jason, Ph.D.
Professor, DePaul University, Chicago, IL

Workshop 6
Exercise Intolerance: Guide to Management and Treatment
This workshop will provide an overview of exercise intolerance and the management of post-exertional symptoms in CFS/ME. A review of assessment tools for measuring physiological responses during exercise will be included, and case studies examining both successes and common failures of persons with CFS/ME will be presented. Given the problem of exercise intolerance in CFS/ME, the workshop will conclude with a practical model that a clinician can use to safely and successfully implement activity management strategies.

Staci R. Stevens, M.A.
Vice President, IACFS/ME
Founding Executive Director, Fatigue Lab, University of the Pacific, Stockton, CA

Christopher R. Snell, Ph.D.
Professor, Department of Sport Sciences, University of the Pacific, Stockton, CA

J. Mark VanNess, Ph.D.
Associate Professor, Department of Sport Sciences, University of the Pacific, Stockton, CA
Adjunct Professor, Department of Bioengineering, University of the Pacific
Adjunct Instructor, Department of Biology, University of the Pacific

Brian D. Moore, Ph.D., ATC
Assistant Professor, Sport Sciences Dept, University of the Pacific, Stockton, CA

Workshop 7
Fibromyalgia Assessment and Treatment
Chronic widespread pain (CWP) is associated with many somatic symptoms, including fatigue, anxiety, depressed mood, and insomnia. Patients at the extreme end of the CWP spectrum have been labeled with fibromyalgia (FM). These patients show signs of abnormal pain processing including increased central pain sensitivity and dysfunctional endogenous pain modulation. During this workshop mechanism based assessments and therapies of FM will be discussed

Roland Staud, M.D.
Professor, University of Florida, Gainsville, FL

Workshop 8
Treating Sleep, Pain and Fatigue in ME/ CFS Patients
Two experienced clinicians will discuss current issues in the management of PWCs (Persons with CFS or FM). Using a combination of brief lectures and actual cases, Drs. Bateman and Lapp hope to stimulate engaging discussions about the practical management of sleep, pain, fatigue, orthostatic problems, maladaptive behaviors, and 'whatever.' Attendees are encouraged to bring their questions to the workshop.

Charles W. Lapp, M.D.
Associate Clinical Professor, Duke University Medical Center, Charlotte, NC
Medical Director, Hunter-Hopkins Center, Charlotte, NC

Lucinda Bateman, M.D.
Adjunct Clinical Faculty, Departments of Anesthesiology, Family & Preventive Medicine, and Internal Medicine, University of Utah, Salt Lake City, UT
Director, Fatigue Consultation Clinic, Salt Lake City, UT
September 22-25, 2011

General Session Agenda-Friday, September 23rd

8:30 am - 8:45 am
Welcome and Introduction
Fred Friedberg, Ph.D.
President, IACFS/ME

8:45 am - 9:15 am
Plenary Session: Gammaretroviruses of Mice and Their Links to Prostate Cancer and CFS/ME
Christine Kozak, Ph.D.

Paper Sessions following all the papers, the panel members will field questions written on cards by the audience and given to the chair as time permits.

9:15 am 10:30 am
Session: Virology Research
Session Chair: Jose Montoya, M.D.

Blood XMRV Scientific Research Working Group: Latest Findings
Graham Simmons, Ph.D.

Detection Of Anti-XMRV Antibodies In Serum of CFS Patients and Healthy Blood Donors in Belgium
Kenny De Meirleir, M.D.

Detection of MLV-like Gag Sequences in Blood and Cell Lines Incubated With Plasma From CFS Patients and Controls
Maureen Hanson, Ph.D.

Chronic Fatigue, Nonrestorative sleep, Musculoskeletal Pain, and Depression in a Disabled Cohort of Survivors of Acute SARS Viral Disease
Harvey Moldofsky, M.D., Dip.Psych., FRCPC, FAPA

10:30 am 10:45 am
Break / Visit Exhibits

10:45 am - 11:45 am
Session: Virology Research and Review
Session Chair: Jose Montoya, M.D.

Role of the Immune Response in CFS
Jose Montoya, M.D.

The Case FOR Human Gamma Retroviruses (HGRV) in CFS/ME
Judy Mikovits, Ph.D.

The Case AGAINST Human Gamma Retroviruses (HGRV) in CFS/ME
John Coffin, Ph.D.

11:45 am 12:30 pm
Session: Treatment Advances
Chair: Eleanor Stein, M.D.
Health/Performance and Response Status of XMRV/pMRV
Antibody Positive vs. Negative Chronic Fatigue
Syndrome (CFS) Subjects in a Phase III Clinical Trial
David R. Strayer, M.D.

Rifampin Augments the Effects of
Oxymatrine/Equilibrant (oxm/equi) In Patients with
Myalgic Encephalomyelitis/CFS
John K. Chia, M.D.

Brief Self- Management of UCF/CFS in Primary Care: A
Randomized Trial
Fred Friedberg, Ph.D.

12:30 pm - 2:00 pm
Lunch Break/Visit Exhibitors
Note: Lunch is Self Pay from hotel and local restaurants

2:00 pm 3:00 pm
Session: Fibromyalgia: Are Tender Points Necessary? A Debate
Chair: Lucinda Bateman, M.D.

Tender Points are Important
Roland Staud, M.D.

Tender Points are Unnecessary
Daniel J. Clauw, M.D.

3:00 pm 3:30 pm
Break / Visit Exhibits

3:30 pm - 5:30 pm
Session: Diagnosing CFS/ME; Difficult Clinical Cases
Session Chair: Nancy Klimas, M.D.
Case Presentations by: Charles Lapp, M.D., Lucinda
Bateman, MD, Rosamund Vallings, MNZM, MB BS, Derek
Enlander, M.D.

5:30 pm - 6:15 pm
Visit Poster Presentations / Exhibits

6:15 pm - 7:15 pm
Standardizing Data Collection in CFS/ME CASA Project
(collection, aggregation, storage and analyses)
Non CME Session
Session Co-Chairs: Elizabeth Unger, M.D., Ph.D. &
Dennis Mangan, Ph.D.
Fred Friedberg, Ph.D., Leonard Jason, Ph.D., Nancy
Klimas, M.D., Anthony Komaroff, M.D.

SATURDAY AGENDA

8:00 am 9:30 am
Session: Case Definitions for Research and Practice
Chair: Kenneth J. Friedman, PhD

The New International Consensus Criteria for ME: Content
and Context
Bruce M. Carruthers, M.D.

Contrasting Case Definitions
Leonard Jason, Ph.D.

Data Mining
Leonard Jason, Ph.D.

Pathways to Pathogenesis: Standardized Measures of CFS/ME Illness Domains
Elizabeth R.Unger, M.D., Ph.D.

9:30 am 10:30 am
Session: Identifying Abnormalities in CFS/ME: The Importance of Exercise Challenge
Chair Staci R. Stevens, M.A.

Exercise Testing to Quantify Effects of Fatigue on
Functional Capacity in Patients With CFS
Betsy A. Keller, Ph.D.

The Importance of Exercise Challenge
Christopher Snell, Ph.D.

10:30 am - 11:00 am Break/Visit Exhibits

11:00 am 12:15 pm
Session 9: The Latest Research in Immunology
Chair: Nancy Klimas, M.D.

Natural Killer Cell Number and Function in a Prospective
Cohort of Adolescents with Chronic Fatigue Syndrome
and Controls Following Mononucleosis
Benjamin Katz, M.D.

Disparities In Innate and Adaptive Immune Cell Activities
in Chronic Fatigue Syndrome
Ekua W. Brenu, PhD candidate

Longitudinal Assessment of Adaptive Immune Regulation
in Chronic Fatigue Syndrome
Ekua W. Brenu, PhD candidate

Promoter DNA Methylation and Expression of Perforin in
CFS and Controls
Virginia R. Falkenberg, Ph.D.

12:15 pm 1:30 pm
Lunch Break/Visit Exhibits
Note: Lunch is Self Pay from hotel and local restaurants.

12:30 pm 1:15 pm
Breakout Session: Mainstreaming ME/CFS Researchers
and Healthcare Providers into Our Peer Communities
Chair: Kenneth J. Friedman, Ph.D . Non CME Session


1:30 pm 2:30 pm
Session: New Developments in Pediatric ME/CFS
Chair: Teruhisa Miike, M.D, Ph.D.

Linking Lymphocyte Metabolites with Clinical Course in Post-Infectious Fatigue
Gordon Broderick, Ph.D.

A Trial for Prevention of CCFS Onset from The View Point of Sleep Issue
Terusha Miike, M.D., Ph.D.

Therapeutic Outcome by Two-months Intensive Sleep-
Wake Circadian Rhythm Treatments in
Japanese Children and Adolescents with Chronic Fatigue
Seiki Tajima, M.D.

What is the Natural History of Chronic Fatigue Syndrome in Young People?
Katherine S. Rowe, MBBS, M.D., FRACP

2:30 pm - 3:00 pm
Break / Visit Exhibits

3:00 pm 4:00 pm
Session: New Developments in Epidemiology
Chair: Kenneth J. Friedman, Ph.D .

Natural History
Leonard Jason, Ph.D.

CFS Knowledge And Illness Management Behavior Among
U.S. Healthcare Providers and The Public
Elizabeth Unger, M.D., Ph.D.

Profile of the Patient with Chronic Fatigue Syndrome; Experience with a Population-Based Registry
Jose Alegre, M.D.

4:00 pm - 5:00 pm
Visit Poster Presentations / Exhibits

5:00 pm - 6:00 pm
IACFS/ME Membership Business Meeting

6:00 pm 7:00 pm
IACFS/ME Social/Cocktails Hour

7:00 pm - 8:00 pm
IACFS/ME Banquet Dinner

8:00 pm 9:00 pm
Awards Presentation & Banquet Keynote
Ten Important Facts Derived from M.E./CFS History and That Can Improve M.E./CFS Research
Byron M. Hyde M.D.

SUNDAY AGENDA

8:30 am - 10:00 am
Session 12: Research Developments in Genomics and Genetics
Chair: Christine Kozak, Ph.D.

Expression Patterns of miRNAs in Lymphocytes In Patients
with Chronic Fatigue Syndrome
Ekua W. Brenu, PhD candidate

Pathway-Focused Genetic Evaluation of Immune and
Inflammation Related Genes in CFS
Mangalathu S. Rajeevan, Ph.D.

Gene Expression Of Sensory Ion Channels, Adrenegic
Receptors and Cytokines: Potential Biomarkers for CFS
and Fibromyalgia
Lucinda Bateman, M.D.

Gene-Exposure Interactions In The Etiology Of Gulf War
Illness: Evidence Of Increased Vulnerability to
Neurotoxicants in Identifiable Veteran Subgroups
Lea Steele, Ph.D.

Comparing Gene Expression Patterns in CFS and GWI Using the Kerr ME/CFS Platform
Lina Garcia, M.D.

10:00 am 10:15 am
Break

10:15 am 11:45 am
Session: Advances in Brain and Neuroendocrine Functioning
Chair: Andrew H. Miller, M.D.

Regional Grey and White Matter Volumetric Changes in
Chronic Fatigue Syndrome (Myalgic Encephalomyelitis):A
Voxel-Based Morphometry 3T MRI Study
I. H. Treasaden, M.B., B.S., LRCP, MRCS, FRCPsych, LLM

Evidence For Reduced Aldosterone in Persons with Chronic Fatigue Syndrome
Roumiana S. Boneva, M.D., Ph.D.

Interaction of Self-And Illness-Related Cognitive Processing In The Right Anterior Insula of CFS Patients: An fMRI Study
Andrew H. Miller, M.D.

Decreased Basal Ganglia Activation in CFS Subjects is
Associated With Increased Fatigue
Andrew H. Miller, M.D.

Assessment of Regional Cerebral Blood Flow in CFS Using Arterial Spin Labeling MRI
Jonathan P. Dyke, Ph.D.

11:45 am 1:00 pm
Lunch / Visit Exhibits
Networking Lunch - Offering an opportunity for clinicians to network and talk about assessment and treatment issues.

1:00 pm 2:00 pm
Session: IACFS/ME Clinical Practice Manual: Developing A New Primer
Guidelines Panel
Fred Friedberg, Ph.D., Rosemary Underhill, M.D., Rosamund Vallings, MNZM, MB BS, Alan Gurwitt, M.D.
Leonard A. Jason, Ph.D., Lucinda Bateman, M.D., Kenneth Friedman, Ph.D.

2:00 pm 2:30 pm
Summary of the Conference
Anthony L. Komaroff, M.D.

2:30 pm
Conference Concludes

 

[Enid]

Thanks Cort - this is one Conference I/we really look forward to hearing about. Dare one think things are on the move now.

 

[Sing]

I hope that you, Cort, or someone else here will relay what Dr. Byron Hyde says on Saturday night. As one of the great old-timers in the business, so to speak,
one of our "Elders", I expect he still has valuable contributions to make!

Sing

 

[eric_s]

Thanks, Cort. I also expect interesting news from this conference. Now i just looked at the workshops on Sept 22 and i have to say i'm a bit disappointed by them. There's not much about actually finding and treating the causes in there (except for the first one) and too much about managing, etc. I'm quite tired of the approach of telling PWCs how to cope, adapt, excercise, etc. In the end the job of researchers and physicians is to restore our health, at least as much as possible, in my opinion.

 

[Boule de feu]

Thanks, Cort. I also expect interesting news from this conference. Now i just looked at the workshops on Sept 22 and i have to say i'm a bit disappointed by them. There's not much about actually finding and treating the causes in there (except for the first one) and too much about managing, etc. I'm quite tired of the approach of telling PWCs how to cope, adapt, excercise, etc. In the end the job of researchers and physicians is to restore our health, at least as much as possible, in my opinion.

I feel the same way.

 

[currer]

As someone who has been ill for thirty one years I agree with eric that we need hard science here.
Behavioural interventions are just an excuse for doing no proper science.
This is wearing thin. How much longer do they expect to get away with this self-serving approach?

 

[Gamboa]

I will report in when I can from the conference - here are the agenda's


Patient Agenda

Oh good Cort. I'm glad you will be there. I am also signed up for all 4 days and am hoping to be able to post information but had a colonoscopy today which has wiped me right out. I hope after a good sleep today and tonight I'll feel better tomorrow but , as we all know, with this illness I'll probably be worse.

I'll be dragging myself in one or another so will introduce myself to you at some point over the 4 days.

Gamboa (Claire )

 

[Nielk]

Good luck to all of you attending the conference. I hope it will be enlightening and not too tiring for you.
Thanks for making the effort to represent us.

 

[Boule de feu]

Good luck to all of you attending the conference. I hope it will be enlightening and not too tiring for you.
Thanks for making the effort to represent us.

Thank you, Nielk.
I'm a bit anxious to go. My health is not the best right now, but I am very curious to see what they have in store for us. I'm sure many of us will give an update the minute we can. Take care. BDF

 

[allyann]

There is mention of a video recording in this thread. I will send off an email to get more info on that, but does anyone know if we able to purchase the papers from the conference? I emailed the conference organisers a few months ago but have not heard back.

 

[Dolphin]

There is mention of a video recording in this thread. I will send off an email to get more info on that, but does anyone know if we able to purchase the papers from the conference? I emailed the conference organisers a few months ago but have not heard back.

In the past, I think one could buy the abstracts - but they were quite dear (low 3-figure US, IIRC).

Similarly, video recordings of the 2009/2007(?) conference were a lot dearer than I recall any or nearly any other recording I've seen e.g. $195? That's why I'm hoping for some feedback - not alone will buying it be out of my range, I don't think we can depend on many other people buying them either.

 

[Sing]

Dolphin, there will be a DVD to buy--don't know how much for, though I know that this conference needed much more financial backing than it has received so far, so it will be very
helpful if some can contribute this way. I know that Cort here and I am sure others will write summaries of parts of it. The information will be disseminated one way or another, don't worry!

 

[Boule de feu]

We found out yesterday that everyone who participated will get a free copy of the DVD.
We also got Dr Byron Hyde's encyclopedia... FREE! =-)


There was one question about how the WPI will react to the BWG news.
Annette said that if it turns out not to be this pathogen, there will be other pathogens to look for. They will do whatever it takes to figure out what causes ME. They are committed to figure out what causes ME.
(anyway, something along those lines... by the time the questions were on, I was totally out of it.)

Dr. Byron started by saying that his views were totally different from all of the other speakers. He explained that most CFS cases were missed diagnoses.

Dr. Bested did a very touching interpretation of the "Way we were". The song was about PACING and how important it is for ME patients.

The disability guy was VERY knowledgeable. Too bad I won my case, I would have hired him on the spot! ;-)

Dr. Nancy Klimas - Energetic, convinced and convincING, as usual.

Dr. Komaroff - We need more doctors like him!

For some of us, these sessions were very informative. Personally, I did not get much out of it. My brain fog was so severe by 11 a.m. I had a hard time keeping my head up - too dizzy! However, the lady who was sitting right besides me said that she was "overwhelmed" by all of the info she got. She could not wait to go home to tell her daughter everything she had learned. This was all very new to her. Her daughter has been sick and bedridden for one year. She was very desperate to figure out what was wrong with her.

 

[Nielk]

From FB IACFS/ME Action page:


It is 0630 and I am up and ready to begin another day of the conference. I was so tired after spending almost two hours after yesterdays session with a group of almost twenty me/fm sufferers sitting around Dr. Leonard Jason pouring out their hearts about their lives while suffering from those illness. Two of those people also had their partners sitting beside them for support which was wonderful to see. I was so tired after that I came to my room and went straight to bed.

The first day began with Dr. Hyde announcing that each participant of the conference will receive compliments of the Nightingale Research Foundation the book The Clinical and Scientific Basis of ME/CFS. A booklet Definition of Myalgic Encephalomyelitis (ME) was also distributed. There is also a short book Missed Diagnosis available in print or electronically on Lulu.Com.
Midway into yesterdays agenda it was unanimously agreed upon that all the information presented at this conference will be available on line and through CDs. It is important that everyone involved with promoting the validity of these illnesses, or is it one illness? I believe it is one illness with differences in severity and outcomes, but no doubt that there is enough pathology evidenced now that it would be criminal not to proceed as fast as we possibly can with education and more research.

The stunning facts that Dr. Bested released and aired on CBC Radio, Ottawa, from the extensive statistical research done by the ME/FM Action Networks Margaret Parlor confirms that the increase in the numbers (23% in CFS and 13% Fibromyalgia) with three quarters of million people inflicted now. These statistics are alarming and should alert government officials that something has to be done and done quickly.

Pathology is showing in peoples blood vessels, From what? Medications? Some drugs like Statins can cause serious pain. why? Why are there so many atrophied thyroid glands, liver and kidney damage?

Dr. Komaroff spoke and said Is it cause of symptoms (effects on the brain)) or is it the cause of the cause of the symptoms that makes wrong energy metabolism that we all have to live with and why? Spec scans show reduced areas of signal cognition for speed memory and attention with autonomic dysfunction, causing sleep disorders and Neuroendocrine problems, affecting possibly every system in our bodies.

Test after test shows abnormality from measuring lactic acid in spinal fluid. There is an increased anerobic metabolism in inflicted patients resulting in higher levels of lactic acid.

Why are there an decreased number of natural killer cells and increased cytokines, more oxidative stress and damage done to the mitrochondria or the powerhouse where energy is created in our bodies.
Dr. Jason spoke about ways for people to deal with this debilitating illness by non pharmaceutical intervention, which I thoroughly agree with. I take no medication except thyroid hormone and treat myself holistically by the exact methods he referred to in his lecture.

Sleep hygiene is very important and we need lots of rest and relaxation rest is repair rest means restore and wind down at least an hour before trying to sleep. You must feel sleepy, being tired will not put you to sleep, sleepiness will

It is important to resolve the anger that may come from being ill, misunderstood and perhaps maltreated, but anger is self destructive and has to be resolved.

Dr. Ronald Staud spoke on Fibromyalgia, which the information will be available on line. Pain is very complex and the synaptic transmission of pain can be measured with functional MRIs and other scanning, so yes the pain is very real. One thing to keep in mind is that increased anxiety increases pain signals and pain sensitivity. Increased pain shows increased atrophy of the brain. The question is why?

Mr. Hugh Sheyer our legal consultant spoke on the the legalities that people face while disabled and trying to obtain financial benefits. Each case is individual, depending upon the employer and social benefits and severity of symptoms. The diagnosis should be irrelevant, but that is sometimes not the case.

Dr. Nancy Klimas spoke on the level of neuro-immune dysfunction related to these illness and explained the differences between CFS/me patients and Gulf War Syndromes patients. CFS patients turn off pathways, Gulf war patients turn on pathways. They are different, but have same symptoms. Interesting!!

Annette Whitmore from the Whitmore Petterson Institute In the USA, the research money for MS is 135,000,000 and for ME is 6,000,000. This ratio has to change as the numbers of people inflicted increase, according to governments own statistics.
Scientific work is continuing to be done on retroviruses and blood donation from people with ME/CFS symptoms is discontinued. The institute is encouraging medical students to become more involved with these misunderstood illnesses and support patient advocacy groups. ANIDA . (1) Advocate for neuro-immune disease awareness. (2) Educate friends and family. (3) Keep writing to Governments.

Ms. Stacey Stevens explained why me/cfs have exercise intolerance and why. The use of a heart monitor is recommended and keeping within the individual anerobic threshold and why.

I am running out of time now, gotta go for breakfast and another busy day.
This is unedited and written from notes I took yesterday. Please excuse spelling errors and omissions. Thanks Judi Day

 

[Cort]

I attended Clauw's presentation that took up the morning and took many notes (which are not with me); the most salient fact I remember was that he believes that an FM-like disorder (eg a CFS like- disorder) is basically the most prevalent disorder in the US and probably the world. He stated that this disorder is so distinctive that he and other practitioners knowledgeable can pick up it up in minutes in a patients....all they have to do is start describing their symptoms. He's seen it all over the world and its the same...its the same in Kenya as it is in the US.

He believes an FM/CFS like-condition occurs in 20-30% of ALL disorders...that's cancer, diabetes, arthritis, etc....20-30% of everyone that has a chronic illness has a CFS-like condition. They all look roughly the same; they have increased pain, fatigue, they sleep poorly and have problems with odors and other stimuli. He believes this group of disorders costs more medical costs than any other group of disorders and the research community will get that at some point.

 

[Dolphin]

Cort has been Tweeting some comments for anyone interested. He can be followed at: https://twitter.com/#!/CortJohnson

 

[Nielk]

Thanks Cort for your reporting back to us.
Appreciate it

 

[Cort]

Hanson's XMRV Study at IACFS/ME conference

the sensitivity of the PCR assays used requires extreme caution in interpreting results

First she tried finding env sequences in her samples from Dr. Bell but couldnt find it. Then Hanson switched to looking for the gag sequence - a more conserved region of the virus. She found them but upon further analysis determined that they did not contain the classic 24 bp deletion found in XMRV - she had not found XMRV.

She then tried to culture the samples as per the WPI and found the gag sequence for XMRV but no other sequences - which was troubling plus there was no difference between healthy controls and ME/CFS patients. She decided that culturing for 30 days left too much opportunity for contamination.

Hanson then got more rigorous. She went from nested PCR (more susceptible to contamination) to single PCR, reduced her processing of samples, implemented IAP and did changed blood collection procedures and her positive GAG results disappeared. She suggested that she could have contaminated her samples with GAG amplicon she used.

Then she did antibody tests - which does not have the contamination problems of PCR and she found that antibody tests for XMRV were positive in half her CFS patients and in about 15% of healthy controls. She emphasized that this did not mean they had been exposed to XMRV (since she had not found XMRV). She suggested that people with ME/CFS could have a retrovirus other than XMRV and urged more work in this area.

 

[Christopher]

the sensitivity of the PCR assays used requires extreme caution in interpreting results

First she tried finding env sequences in her samples from Dr. Bell but couldnt find it. Then Hanson switched to looking for the gag sequence - a more conserved region of the virus. She found them but upon further analysis determined that they did not contain the classic 24 bp deletion found in XMRV - she had not found XMRV.

She then tried to culture the samples as per the WPI and found the gag sequence for XMRV but no other sequences - which was troubling plus there was no difference between healthy controls and ME/CFS patients. She decided that culturing for 30 days left too much opportunity for contamination.

Hanson then got more rigorous. She went from nested PCR (more susceptible to contamination) to single PCR, reduced her processing of samples, implemented IAP and did changed blood collection procedures and her positive GAG results disappeared. She suggested that she could have contaminated her samples with GAG amplicon she used.

Then she did antibody tests - which does not have the contamination problems of PCR and she found that antibody tests for XMRV were positive in half her CFS patients and in about 15% of healthy controls. She emphasized that this did not mean they had been exposed to XMRV (since she had not found XMRV). She suggested that people with ME/CFS could have a retrovirus other than XMRV and urged more work in this area.

like other HGRV's.

 

[eric_s]

the sensitivity of the PCR assays used requires extreme caution in interpreting results

First she tried finding env sequences in her samples from Dr. Bell but couldnt find it. Then Hanson switched to looking for the gag sequence - a more conserved region of the virus. She found them but upon further analysis determined that they did not contain the classic 24 bp deletion found in XMRV - she had not found XMRV.

She then tried to culture the samples as per the WPI and found the gag sequence for XMRV but no other sequences - which was troubling plus there was no difference between healthy controls and ME/CFS patients. She decided that culturing for 30 days left too much opportunity for contamination.

Hanson then got more rigorous. She went from nested PCR (more susceptible to contamination) to single PCR, reduced her processing of samples, implemented IAP and did changed blood collection procedures and her positive GAG results disappeared. She suggested that she could have contaminated her samples with GAG amplicon she used.

Then she did antibody tests - which does not have the contamination problems of PCR and she found that antibody tests for XMRV were positive in half her CFS patients and in about 15% of healthy controls. She emphasized that this did not mean they had been exposed to XMRV (since she had not found XMRV). She suggested that people with ME/CFS could have a retrovirus other than XMRV and urged more work in this area.

Interesting, but in a way also disappointing, i expected a "real" positive study. Any word about blinding? Was this done blind?