IACFS/ME

Posted by Cort Johnson

The IACFS/ME Newsletter was chock full of good news this time… For starters, Stanford, of all places is co-sponsoring the next IACFS/ME Conference!

Stanford University to Co-sponsor IACFS/ME Conference in March, 2014

In a surprise, Stanford, the 4th ranked medical research university in the U.S., will co-sponsor the next IACFS/ME Conference in 2012

Patient groups groups have always co- hosted IACFS/ME conferences in the past but that’s changed – and in a big way.   One might have thought the first University to co-sponsor an IACFS/ME conference would be a small one but no,  in a stunning turn of events, somehow the IACFS/ME, Dr.… Read More

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

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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

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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

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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

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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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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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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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Posted by Cort Johnson

danrenojpgDan Moricoli was no shrinking violet before he came down with chronic fatigue syndrome (ME/CFS) three years ago. A business owner, internet marketer, motorcycle racer, skiing enthusiast and deep-sea fisherman Dan was, in fact, something of an adrenaline junky. At sixty Dan’s idea of coming down from the stress of work was to race motorcycles. But this disease got him, as it does with everyone, to reassess his priorities. After getting stricken with a severe case of ME/CFS on a fishing trip Dan turned his considerable talents toward an area he knows very well, the internet.

The internet is, of course, an essential component of many ME/CFS patient’s lives; for the most severely ill of us it can be the only means of access to the outside world.… Read More

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