conferences

Posted by Cort Johnson

Putting the Puzzle TogetherThe State of the Knowledge Workshop is here and it’s a good one. A hearty congratulations to Pat Fero, Mary Schweitzer, Ken Friedman, Dr. Jason, Dr. Klimas, Dr. Vernon and Dennis Mangan for what they’ve produced.  The last NIH Workshop/Conference of this sort was the Neuroimmune Conference of eight years ago and was filled with NIH researchers who had little or no experience with CFS. This conference on the other hand is packed with ME/CFS researchers.

After overviews by Dr. Komaroff (who else?) and Dr. Jason (who else?) on characterizing and defining ME/CFS the Workshop jumps into four 20 minute presentations on EBV (Glaser), enteroviruses (Chia) and XMRV (Mikovits/Coffin).  … Read More

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Posted by Cort Johnson

A New Center - Much research and discussion now is not centered around XMRV but around a prostate cancer cell line called 22RV1. More than anything else this cell line that is what is causing problems for XMRV.

The 22RV1 cell line was created in 1999 in response to a need to study prostate cancer – a major cause of male mortality. Creating the cell line involved ‘passaging’ prostate cancer cells through nude mice tissues. At some point researchers were able to create a ‘cell-line’, a group of cells they could use to reliably grow prostate cancer cells and study them.… Read More

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THE INTERNATIONAL CONFERENCE ON FATIGUE SCIENCE February 9-11, 2005, Karuizawa, Japan

Dan Peterson, MD (Sierra Internal Medicine, Incline Village, Nevada, 775-832-0989, ext 201)

Dr. Peterson found HHV-6A in 29% of the serum and in 20% of the spinal fluid of his patients with prominent CNS symptoms: neurocognitive problems, headaches, paresthesias or autonomic dysfunction. Of those with virus in the spinal fluid, the blood tests were negative 40% of the time. This means many physicians get false negative results when they test for HHV-6 in the serum.

Peterson tested 430 patients by PCR or rapid culture, and found 126 were positive at least once.… Read More

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The 2009 Invest in ME Conference Report by Chris


I am the Patient Advocate for my thirty-five year old daughter. I travel to
conferences to observe what is going on in the field. This is not a
scientific report. It is a record of my impressions, as limited as they may
be. They are presented to give some impression of this conference to those
who were not able to attend, particularly patients and patient advocates. I
apologize ahead of time for my own biases and editorializing. A DVD will be
released of the conference in July and can be purchase for 12 pounds.

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The IACFS/ME Conference II: the Hit of the Conference
The Whittemore-Peterson Neuro-Immune Institute

Panorama RenoPanorama RenoPanorama Reno

Reno, Nevada: March 12-16, 2009
By Cort Johnson

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“You just keep showing these guys compelling data. We have a piece of data that would just knock your socks off but I’m not showing it. ” Dr. Judy Mikovits

 For Neuro-immune Research

The Whittemore-Peterson Neuro-immune Institute was the hit of the conference. They appear to have more further quickly than any ME/CFS research effort has to date. One reason has been their decision to focus one subset. Dr. Peterson has conjectured that this subset – often referred to as the Incline Village Cohort – makes up somewhere around 20-30% of the chronic fatigue syndrome (ME/CFS) population.

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The IACFS/ME Conference Reports VI

Rocking the ME/CFS Research Field – Dr. Vernon at the Reno Conference

Panorama RenoPanorama RenoPanorama Reno

Reno, Nevada: March 12-16, 2009
By Cort Johnson

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Walking Her Talk

Collaboration is a key aspect of Dr. Vernon’s vision. She won the OFFER Research Excellence Award and during her acceptance speech she hit this aspect hard. This wasn’t your usual “thank you address’. Dr. Vernon used the bully pulpit she had to communicate her vision of a vastly changed ME/CFS Research field and she didn’t mince words; she asserted that the research community needs to put its ‘ego’s aside’ if this field is going to progress rapidly.

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The IACFS/ME Conference II: Treatment – Physiological Approaches

Panorama RenoPanorama RenoPanorama Reno

Reno, Nevada: March 12-16, 2009

Introduction – The behavioral approaches to treating chronic fatigue syndrome (ME/CFS) won out on this conference with six presentations on behavioral approaches and only two on non-behavioral approaches to chronic fatigue syndrome. The poster section, however, was crammed with all sorts of non-behavioral (and behavioral) treatment approaches.

SLEEP

International Sleep Day PhotoSleep Patterns in CFS Patients and the Immunomodulatory Effects of Sodium Oxybate in Patients with Alpha Intrusion. N. Hone, L. Garcia, M Vera, N Chediak, M Fletcher and N. Klimas. Alpha Intrusions CFS

Dr. Klimas is a big fan of sleep studies she believes that virtually everyone who can get one should (but be sure to get the right kind of sleep study!) and here, in a pretty nice sized study (61 patients), we got a good look at the sleep problems present in chronic fatigue syndrome.

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The IACFS/ME Conference Reports #IV

The Surprise of the Conference

Panorama RenoPanorama RenoPanorama Reno

Reno, Nevada: March 12-16, 2009
By Cort Johnson

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And Now For Something Completely Different

Adrenergic and Sensory Receptor Expression on Leukocytes Increases After Moderate Exercise in Chronic Fatigue And Fibromyalgia. Allan Light, A. White, L. Bateman and Kathleen Light.

Dr. Light at Reno

I was fighting off sleep at this point. We’d just heard about yet another cortisol study a subject that is increasingly wearing me out. Every conference, though, has its surprises. Dr. Bateman said the Utah Group was doing some great stuff but my mouth gaped when I heard this presentation.

Dr.

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Whack Those Patients!

March 6, 2011

The IACFS/ME Conference Reports # V

Whacking Those Patients – The Exercise Studies

Panorama RenoPanorama RenoPanorama Reno

Reno, Nevada: March 12-16, 2009
By Cort Johnson

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Whack Those Patients!

Two years ago repeat exercise tests at the 2007 Fort Lauderdale IACFS/ME showed ME/CFS patients falling apart metabolically on their second exercise test. Dr. Whistler was impressed enough with her results to call for stress tests of one sort or another to be used in every study. One of the most intriguing themes of the conference is the degree to which repeat exercise tests are beginning to pervade the research arena.

More Stress = Better Results: The Call Goes Out to Whack ME/CFS Patients

Natural Killer Cell Function is Depressed in Gulf War Illness.

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The IACFS/ME Conference I: Treatment – Lifestyle Managment, Stress Reduction, CBT and Something New

Panorama RenoPanorama RenoPanorama Reno

Reno, Nevada: March 12-16, 2009
By Cort Johnson

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Activity Management – The Crucial Element? – Energy Envelope Therapy Produces Results

A Presentation by Dr. Leonard Jason

Dr. Leonard Jason It’s crystal clear that there are negative consequences to pushing outside one’s ‘energy envelope’. But it’s been less clear whether the benefits of staying inside that envelope translate to more than simply ‘feeling better’. Can rigorously attending to one’s energy envelope actually improve one’s health in a measurable way? Could a sojourn inside that energy envelope actually allow some patients to recover enough energy to return to health?

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A Report on the 8th IACFS Conference in Fort Lauderdale, Florida, 2007 by Rosamund Vallings, M.D.

I was privileged to attend the 8thIACFS conference in Fort Lauderdale, Florida from 10-14thJanuary 2007. There was a larger number of presentations and attendees than at any previous CFS conference, and the quality of presentations and research achieved in the past 2 years was indeed exciting. The conference was ably organized and hosted by Dr Nancy Klimas, and thanks must go to her. This conference combined the research and clinical work which thus gave a good overview of all aspects of the illness.

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A Retrospective on the 8th IACFS Conference by Virginia Teague

(from http://www.iacfsme.org/ARetrospectiveonthe8thIACFSConference/tabid/106/Default.aspx)

This year’s IACFS/ME conference in Fort Lauderdale at the Bahia Mar Resort offered attendees an innovative format focused on the theme of interdisciplinary research and integrative care. The conference began with a two-day session focused on the needs of patients. Patient advocates from international advocacy organizations on CFS, FM, and related illnesses met for the first time to share their ideas in workshops on fundraising fundamentals, empowerment, and media training. Co-hosted by P.A.N.D.O.R.A (Patient Alliance for Neuroendcocrineimmune Disorders Organization for Research and Advocacy, Inc.), these sessions, attended by 350 patients and 222 professionals, provided a unique opportunity for patients to meet and talk with leading international researchers and clinicians.

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The 2007 PANDORA Patient’s Conference: PART I: Politics, Advocacy and the Media, Dr. Teitlebaum and D-ribose, Ask the Experts by Cort Johnson

The patient conference was an overwhelming success. It has always been a kind of poor sister to the professional conference but this time with its strong program and top-notch speakers the patient conference was a success in and of itself. According to people who’d been to the patient conferences in the past the attendance for this one was double or triple that of the preceding conference. The credit for this success must go to Marly Silverman, Rebecca Artmann and the rest of the P.A.N.D.O.R.A.

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8th International IACFS Conference on CFS, FM, and Related Illnesses by Charles Lappe, M.D., Director of the Hunter-Hopkins Medical Center

The 2007 meeting of the IACFS (formerly AACFS) has set new records for attendance, including more than 250 professionals and over 300 patients. An effort has been made to expand internationally, and over 21 countries were represented at this meeting!

Even before the meeting began, big changes were occurring. The IACFS Board voted to change the name of the organization to the International Association of CFS and ME in recognition of the term – ME – used by many other English-speaking nations, and thereby tendering an alternate name for this illness.Read More

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The 2007 IACFS/ME Conference PART IV: The Clinical Trials by Cort Johnson

These overviews do not follow the conference’s agenda (fatigue, pain, gender, sleep, etc.). Several of those sessions were undersubscribed and had papers on different subjects shoehorned in to fill them out. In order to obtain a more orderly presentation some new sections (cardiovascular/vascular, Exercise and CFS) are added in this overview while others are retained (Brain, Immune, etc.). Papers that I found most interesting are highlighted. Some overviews are found under more than one category.

CONFERENCE HIGHLIGHT

A Biomarker For CFS?

Sakudo, H. Kuratsune, T. Kobayashi, S. Tajima, Y.

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The 2007 IACFS/ME Conference Part III: The Immune System, the Gut, and Pain by Cort Johnson

These overviews do not follow the conference’s agenda (fatigue, pain, gender, sleep, etc.). Several of those sessions were undersubscribed and had papers on different subjects shoehorned in to fill them out. In order to obtain a more orderly presentation some new sections (cardiovascular/vascular, Exercise and CFS) are added in this overview while others are retained (Brain, Immune, etc.). Papers that I found most interesting are highlighted. Some overviews are found under more than one category.

THE IMMUNE SYSTEM

Natural Killer Cell Subsection

The Unnatural Natural Killer Cells in CFS (and elsewhere) – Mary Fletcher, Xiao Zeng, Martin Rosenthal and Nancy Klimas.

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The 2007 IACFS/ME Conference PART II : The Brain, Gene Expression and Genetics Studies by Cort Johnson

These overviews do not follow the conference’s agenda (fatigue, pain, gender, sleep, etc.). Several of those sessions were undersubscribed and had papers on different subjects shoehorned in to fill them out. In order to obtain a more orderly presentation, some new sections (cardiovascular/vascular, Exercise and CFS) are added in this overview while others are retained (Brain, Immune, etc.). Papers that I found most interesting are highlighted. Some overviews are found under more than one category.

THE BRAIN

The brain imaging studies have brought some real excitement to the CFS research field.

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The 2007 IACFS/ME Conference PART I: The Cardiovascular and Exercise Studies and Fatigue Overview by Cort Johnson

These overviews do not follow the conferences agenda (fatigue, pain, gender, sleep, etc.). Several of those sessions were undersubscribed and had papers on different subjects shoehorned in to fill them out. In order to obtain a more orderly presentation some new sections (cardiovascular/vascular, Exercise and CFS) are added in this overview while others are retained (Brain, Immune, etc.). Papers that I found most interesting are highlighted. Some overviews are found under more than one category.

The conference began on a high note with an overview on the state of fatigue science in Japan.

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PART V: Defining CFS, Economic Costs, Epidemiology, Behavior, Takeaway Points

These overviews do not follow the conferences agenda (fatigue, pain, gender, sleep, etc.). Several of those sessions were undersubscribed and had papers on different subjects shoehorned in to fill them out. In order to obtain a more orderly presentation some new sections (cardiovascular/vascular, Exercise and CFS) are added in this overview while others are retained (Brain, Immune, etc.). Papers that I found most interesting are highlighted. None of the posters got presentations; the information from them is from the syllabus. Some overviews are found under more than one category.

CFS and War

Han Kang, Clare Mahan, Paymon Hasehemi, Michael Lyons, Seth Eisen, Charles Engel.

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The Symposium on Viruses in Chronic Fatigue Syndrome (ME/CFS) (June 2008): Part II by Cort Johnson

A Neuro-Immune Fatigue Subset?

D. Peterson. Antiviral treatment of patients with HHV-6, EBV and enterovirus: case reports

There’s this 15-30% percent number floating around ME/CFS. Several doctors have spoken of the 20% of patients who seem immune to their approach. There’s about 20-25% dropout rate in behavioral studies. There’s the 25% ME group of really disabled patients.

Then there’s Dr. Peterson 15-20% group. This is a group for whom the standard toolbox doesn’t fit; they don’t respond to supplements or the commonly used drugs and behavioral modification has no effect.

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