Welcome to the website of the International Association for CFS/ME

 

        IACFS/ME
BOARD OF DIRECTORS


PRESIDENT
Fred Friedberg, PhD
Stony Brook University
Stony Brook, NY, USA

CO-VICE PRESIDENTS
Staci R. Stevens, MA   
Workwell Foundation
Ripon, CA, USA

Lily Chu, MD, MS
Burlingame, CA, USA


TREASURER
Kenneth Friedman, PhD
Castleton State College
Castleton, VT, USA

SECRETARY
Rosamund Vallings, M.B., B.S.
Papakura, New Zealand

Dennis Mangan, PhD
Santa Rosa, CA, USA

Sonya Marshall-Gradisnik, PhD
Melbourne, Australia

Julia Newton, MD, PhD
Newcastle, UK


 



Open Letter to Dr. Francis Collins Director, National Institutes of Health

Date: 4/18/2014
 
Dear Dr. Collins:
On behalf of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), we thank you for your attention to ME/CFS, and encourage the NIH to continue and strengthen research on this debilitating illness.
 
Three weeks ago, the IACFS/ME held its biennial research and clinical conference, attracting some 400 professionals and patients to discuss advances in biomedical and behavioral research on the diagnosis, pathophysiology, genetics, and treatments for ME/CFS. The overwhelming consensus from the attendees is that the research efforts, largely supported by NIH, are paying off. We are tantalizingly close to gaining an understanding of potential biomarkers, genetic traits, brain dysfunction, cytokine abnormalities, autoimmune responses, neurological disorders, and treatments. However, we need a special “push” at this time to solve the mysteries of this illness.
 
We call on you and Directors of key Institutes at NIH to collectively work together to issue a Request for Applications (RFA) calling for R01 and R21 projects related to ME/CFS. At a level of $7-10 million annually for five years, an RFA would double current funding and bring talented investigators into the field for the first time. The ME/CFS RFA would also dovetail nicely with ongoing NIH initiatives including those related to the brain, big data and transformative research.
 
 

IACFS/ME San Francisco Conference the Biggest in Years!

Date: 3/29/2014

Dear Members and Colleagues,
The big news is the success of our international conference in San Francisco, March 20-23. We recorded just under 400 attendees, the best showing for IACFS/ME in the last 15 years. Certainly the attractive venue was a big plus. Also, Jose Montoya’s CFS/ME research meeting at Stanford University Medical Center the day prior to the conference helped to boost our numbers (and vice versa). Also we had a very strong speaker schedule, including virologist Ian Lipkin, best-selling author Abraham Verghese (professor of medicine at Stanford), and Noel Rose, pioneering immunologist from Johns Hopkins University. Much thanks to Jose and to board member Lily Chu for putting together the collaboration with Stanford.

More info...

In Depth Coverage of the IACFS/ME Conference in San Francisco

3/29/2014

An excellent audio summary of the IACFS/ME San Francisco conference presented by Anthony Komaroff, MD may be found at this link:

https://www.dropbox.com/s/vame7msb9h6nnfs/DrKomaroff.MP3

Media coverage of the conference may be found at these links:

David Tuller on Buzzfeed:

http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome-research

Day to day coverage from Phoenix Rising:

http://phoenixrising.me/archives/24323
http://phoenixrising.me/archives/24390
http://phoenixrising.me/archives/24452
http://phoenixrising.me/archives/24522
http://phoenixrising.me/archives/24553

Quixotic blog:

http://quixoticmeblog.blogspot.com/2014/03/detailed-notes-from-all-4-days-of.html

ReceiveUpdates

11th IACFS/ME Biennial International Research and Clinical Conference 

Translating Science into Clinical Care

The IACFS/ME announces our 11th Biennial International Research and Clinical Conference to be held in San Francisco, California, USA, March 20-23, 2014. The conference will be held at the Parc 55 Wyndham Hotel.

Integrative conference themes will focus on fatigue, post-exertional malaise, pain, sleep, pediatrics, cognition, and brain function in CFS/ME and Fibromyalgia. Research and clinical topics will also encompass fatigue in diseases including cancer, autoimmune diseases, multiple sclerosis, pain conditions, mood disorders, and circulatory diseases. In addition, studies on fatigue in sleep, aging, exercise and sport, and occupations will be welcomed.

Different sessions will address advances in assessment and treatment (from biological to behavioral) as well as new developments in virology, immunology, and neuroendocrinology. We also anticipate new topics such as mentoring/career development, clinical fatigue education in medical schools and public health policy with respect to fatigue.

Attendees to IACFS/ME conferences are primarily biomedical and behavioral professionals, including clinicians, researchers, and educators. It is anticipated that this event will be accredited for continuing medical education for Category 1 CME (physicians), CNE for nurses, and CPE for pharmacists. There will also be a separate one day conference on March 20th specifically for patients (fees apply). Patients may also attend the main conference on March 21-23rd for an additional fee. There will be many exciting exhibits and  poster presentations of interest to health professionals, researchers and patients. 

If you would like to be put on our mailing list for future conference developments (call for abstracts, registration, etc.), please provide your email address. Your contact information will be kept confidential and will not be shared or sold to third parties without your express permission.

Receive conference updates?

Donate to the IACFS/ME 2014 Conference fund


 

ME/CFS survey presented at US Food and Drug Administration Drug Development Workshop

Date: April 25-26, 2013

Board member Dr. Lily Chu and Dr. Leonard Jason, along with his research team, recently designed an online survey to answer questions about ME and CFS symptoms, impact on daily life, and patient perspectives on treatment posed by the US Food and Drug Administration (FDA). By mid-April, they had received over 1,000 responses nationally and internationally. On April 26, some results from 360-470 US respondents were presented during panels #2 and #4 of the Workshop. You can watch the meeting here

Further results are summarized in Attachment #1 and Attachment #2. For those who have not taken the survey and would still like to participate, please click on this link. They will continue to collect surveys until MAY 10.

All survey responses will be analyzed and presented in a final document to be submitted in August to the FDA's federal docket. They may also try to publish the results in a scientific journal. Dr. Chu and Dr. Jason would like to thank everyone who took the time and energy to participate in this survey.

Inaugural Issue of Fatigue: Biomedicine, Health and Behavior: Now Online!

Date: 1/28/2013

Dear Members and Colleagues,

We are excited to announce that the first issue of our new peer review journal, Fatigue: Biomedicine, Health, and Behavior published by Routledge/Taylor and Francis is now available online. This is a special free access double issue.  Subsequent issues will be available by login to full members of IACFS/ME.  Also, a print version can be ordered.  For further information on Membership and journal options: http://www.iacfsme.org/MembershipOptions/tabid/211/Default.aspx

Among the seven papers in this first issue, we have a review article on envelope theory by award-winning CFS/ME researcher Leonard Jason. Also the new issue highlights a controlled study from the University of California research team headed by renowned sleep expert Sonia Ancoli-Israel. The topic: chronic fatigue and sleep disruption in cancer patients with implications for light therapy treatment. 

To access Fatigue online, click on:  http://www.tandfonline.com/loi/rftg20

Thank you for your support!

Fred

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

Practice Primer for Chronic Fatigue Syndrome Now Available in User-Friendly Print Version

Date: 9/19/2012

Dear Members, Colleagues, and All Who are interested in Chronic Fatigue Syndrome (CFS):

We are happy to announce that our 2012 CFS/ME Primer for Clinical Practitioners is now available in a user-friendly, professionally prepared print version. This newly released 42-page spiral bound booklet is easy-to-use, particularly for quick referencing of specific sections that may be of interest. The goal of the Primer is to provide the information necessary for clinicians to understand, diagnose, and manage the symptoms of ME/CFS. The new print version will be mailed directly to your door. It may be ordered through www.bookpatch.com for $15.

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

New IACFS/ME Fatigue Journal

Date: 6/2/2012

Dear Members and Colleagues,

On behalf of the board of directors of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), I have signed a contract with a major academic publisher (Routledge/Taylor and Frances) to launch a new subscription-based peer review journal titled: Fatigue: Biomedicine, Health and Behavior. This will be a quarterly publication with the inaugural issue scheduled for release in January, 2013. There are no publication fees for authors.

Link to the rest of the announcement here.

New ME/CFS Primer for Clinical Practitioners

Date: 5/15/2012

Dear Members, Colleagues and All who are interested in Chronic Fatigue Syndrome,

On behalf of the board of directors of the International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME), I am pleased to announce the release of the ME/CFS Primer for Clinical Practitioners. (ME/CFS and CFS/ME are equivalent terms.) The goal of the Primer is to provide the information necessary for clinicians to understand, diagnose, and manage the symptoms of ME/CFS. The text was developed over two years by the 11-member Primer Committee and externally reviewed by a number of international ME/CFS specialists and advocates.

Highlights of the Primer include:

  • A summary of the pathophysiological effects of ME/CFS to date
  • A user-friendly diagnostic worksheet utilizing the Canadian Consensus Criteria
  • Straightforward treatment suggestions covering an array of ME/CFS symptoms
  • Emphasis on post-exertional malaise and activity management
  • Sections on special populations/ problems (e.g. severely affected, pediatric ME/CFS, pregnancy)

The full Primer document is available on the IACFS/ME website (Link to Primer) in a printer-friendly format with a requested donation of $15 to help continue the work of IACFS/ME. We hope you find the Primer to be a useful adjunct to your practice and a worthy companion to your reference library.

With best regards,

Fred
Fred Friedberg, PhD
Chairperson
Primer Committee

President
IACFS/ME
www.iacfsme.org

Link to Primer

December 2, 2011

IACFS/ME Wins $25K Award from Chase Community Giving Contest

Dear IACFS/ME member/supporter,

Thank you for your votes and support during the recent Chase Community Giving contest on Facebook!  IACFS/ME has received confirmation from Chase that our organization was among the top 100 vote-getting charities and will be a recipient of a $25,000 prize.

As many of you already know, we plan to devote a good portion of the prize money to support promising clinicians/ researchers to attend future IACFS/ME conferences and to disseminate a primer on the diagnosis and treatment of ME/CFS to primary care health providers.  We will be sharing details of these programs with you in the future.

Again, a big THANK YOU to all of you.

Sincerely Yours,

Fred

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

November, 2011

International Classification of Diseases (ICD) and CFS/ME

IACFS/ME endorses the CFS Advisory Committee’s (CFSAC) recommendations regarding ICD from their May, 2011 meeting as follows:

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS. CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in US disease classification systems. (Note: no disease classification system under HHS’ control proposes to move or to include CFS in or among psychiatric conditions.)

Fred Friedberg, PhD
President IACFS/ME 

 

July 31, 2011

The New International Consensus Criteria for ME

Reference: Carruthers et al. Myalgic Encephalomyelitis: International Consensus Criteria, The Journal of Internal Medicine, July 2011.

The recent publication of new criteria for ME has generated a number of initial reactions ranging from enthusiasm to concern.  The new criteria designate ME as the appropriate biological name for the illnesss, and put aside the CFS label as confusing and overly-focused on the symptom of fatigue.

The 2003 Canadian Consensus Criteria were used as a starting point, but significant changes were made.  Rather than pathological fatigue, the cardinal symptom of the newly defined ME is post-exertional malaise now  termed,  post-exertional neuroimmune exhaustion. Also the six-month waiting period before diagnosis is no longer required.

The biological focus in the article for the new definition of ME is clear, consistent, and unequivocal.  The ultimate value of the new definition will be determined by our researchers, clinicians, and policy makers.  There are no ready answers about the impact of the re-defined ME on important issues such as illness credibility, physician willingness to diagnose and treat ME, and disability determinations.

The lead author of the new criteria, Dr. Bruce Carruthers, will be a featured speaker at the IACFS/ME Research and Clinical Conference in Ottawa, Sept. 22-25, 2011.  He will share the podium with prominent CFS/ME researchers Dr. Leonard Jason and Dr. Elizabeth Unger in a 90-minute, case-definitions symposium that will allow plenty of time for Q and A about the new criteria.  I expect this to be a lively session.

I think that discussion, debate, and input from practitioners and scientists are now in order regarding this newly defined ME.  

Fred Friedberg, PhD
President
IACFS/ME

June 6, 2011

DSM-5 Somatic Symptoms Disorders and CFS/ME

Dear Members and Colleagues:

I have submitted the comments below to the DSM-5 Work Group on Somatic Symptom Disorders.  We are very concerned about the proposed new diagnosis, Complex Somatic Symptom Disorder, and its potential influence on physicians who see patients with CFS/ME.

Thank you.

Fred

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org


To the DSM-5 Somatic Symptoms Disorders Work Group:

On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACFS/ME), I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.

The Work Group’s well-reasoned points about DSM-IV somatoform disorders -- that they are little used, confusing, and pejorative – do call for a re-evaluation. The question is: What should replace them? The new inclusive CSSD category attempts to offer a simplified and more inclusive diagnosis that may be more user-friendly to physicians and other health practitioners. 

Our major concern is that the logic behind the new CSSD category is not informed by empirical data that directly examines the utility of this diagnosis in medical practice. 
As stated by your Work Group: “A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably. …Predictive validity of most of the diagnostic proposals has not yet been investigated.”

Given the absence of scientific validation of the CSSD diagnosis, the potential for unintended consequences is a serious concern.  One such consequence is the possibility of over-diagnosis that may selectively affect patients with illnesses that are already not well understood such as CFS/ME.  If the treating practitioner is skeptical about the severity or even existence of CFS/ME, then the new criteria can be used to diagnose CSSD without reference to an underlying illness. 

For instance, the CSSD criteria of (2) Disproportionate and persistent concerns about the medical seriousness of one's symptoms. and (3) Excessive time and energy devoted to these symptoms or health concerns, would allow practitioners skeptical of CFS/ME to diagnosis the illness as an Axis I psychiatric disorder. This new psychological diagnosis may then narrow the physician’s focus and reduce the possibility of more effective management of the CFS/ME illness. Furthermore, the CSSD diagnosis may result in additional stigma for already marginalized patients with CFS/ME.  

Over-diagnosis with CSSD may also arise from the broad generality of the new criteria and the absence of clear thresholds for patients to meet the criteria. As with somatization/somatoform disorders, when different criteria are used population prevalence varies from less than 1% for somatization disorder to an astonishing 79% for undifferentiated somatoform disorder (cited from Work Group online document). Arguably, the generality of the criteria for both undifferentiated somatoform disorder and CSSD suggests that CSSD may become a much more common (and potentially misapplied) diagnosis than the somatic symptom disorders that it replaces.

Finally, the CSSD diagnosis will not inform the clinician of CFS/ME-specific issues such as adverse reactions to treatment that are more likely in this hypersensitive population.  By contrast, the CFS/ME diagnosis is useful for an array of illness-related concerns that will assist the clinician in providing care for these medically under-served patients.

Given the above considerations, we ask that the CSSD diagnosis be omitted from DSM-5.  Only when the proper validation studies are done that consider vulnerable populations such as CFS/ME can we know if the use of the CSSD diagnosis has clinical value.  In its current form, we believe that the new diagnosis will do more harm than good.

Thank you.

Fred Friedberg

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org
 

February 24, 2011

IACFS/ME Statement on the PACE Trial:
The Issue of Illness "Reversal"

The much publicized UK-based PACE trial (Lancet, Feb. 18th; http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext) reported positive outcomes for patients with CFS/ME who were treated with cognitive-behavior therapy (CBT) or graded exercise therapy (GET) in comparison to a standard medical care condition or an adaptive pacing condition. The adaptive pacing condition was intended to help patients adjust their activity levels according to their available energy (based on envelope theory).  The findings were similar to previous CBT and GET studies in CFS.  This trial was unique in incorporating a pacing condition and recruiting a very large sample.   That said, we have concerns about how the trial was reported.  

Click here for full text of statement

October 29, 2009

To the CFS/ME Community:

October 29, 2009

To the CFS/ME Community: