Volume 9, Issue 1 • May 2016

May 2, 2016
IACFS/ME Newsletter
Volume 9, Issue 1 – May 2016
Editor Lily Chu, MD, MSHS, IACFS/ME Co-Vice President


IACFS/ME President’s Letter

Dear Members,

As spring finally arrives for many of us in the north, we’re in the midst of active planning for the IACFS/ME Fort Lauderdale research and clinical conference, October 27-30, 2016. Given a number of new developments in our field, this meeting promises to be one of the most exciting in years!

Abstracts welcome!

To our researchers and clinicians: please consider submitting your work for our unique biennial conference. The ongoing call for abstracts includes research abstracts for oral and poster presentations as well as professional workshop proposals and patient workshop proposals (www.iacfsme.org). We welcome original research studies and innovative proposals for symposia and panels that integrate research data and clinical expertise. Submission deadline is May 16th.

High Profile Invited Speakers
Our invited conference speakers are at the cutting edge of new developments in the field. We have, as our keynote, Walter Koroshetz, MD, director of the National Institute of Neurological Disorders and Stroke, the lead US health agency fostering a new commitment to CFS/ME research. Also of great interest to the CFS/ME community, our plenary speaker will be Oystein Fluge, Chief Physician, Department of Oncology, Haukeland University Hospital, University of Bergen, Norway. Dr. Fluge was the principal investigator of two successful rituximab intervention trials in CFS/ME. Given the new US government commitment to CFS/ME research after the publication of the Institute of Medicine report and the National Institutes of Health (NIH) Pathways to Prevention report, our fall conference will be timely and exciting!

Research Pre-Conference
We are also honored to announce a one-day research pre-conference (October 26th) at nearby Nova Southeastern University led by Nancy Klimas, a pre-eminent biomedical scientist and clinician and Director of the Institute for Neuro Immune Medicine. Nancy’s unique combination of research, clinical, and advocacy credentials has made her a highly visible international presence in the field of CFS/ME.

Conference Hotel and Program
The conference hotel, The Westin Fort Lauderdale Beach Resort, is now accepting reservations at a special discounted conference rate. http://iacfsme.org/Conferences/2016-Fort-Lauderdale/Hotel.aspx Registration is expected to open in late June, once we have our session-by-session agenda in place.

We anticipate an exciting and informative program including our signature opening day workshops for clinicians and our unique lecture series tailored for patients and their supporters. Days 2-4 will include oral presentations of original research, clinical sessions, posters, networking events, and a gala reception and dinner on Saturday evening.

Sponsorship Opportunities
Our sponsorship brochure is available online with a broad range of support levels to suit anyone who would like to highlight their product or company at the Fort Lauderdale conference. Click on this link.https://drive.google.com/file/d/0B5z_mBD0UvWqMFlSU21nbGRNOFk/view?usp=sharing 
Please contact board member Lily Chu or Jon Kaiser for further information.

New NIH Funding Supplements for CFS/ME-related Grants
The first concrete evidence of the increased government commitment to CFS/ME is the availability of funding supplements (up to $150K for 1 year) for current NIH grant-supported studies that address specific issues of interest to the funding institute (e.g., biomarkers).

Funding supplements can be invaluable to pursue promising leads based on emerging study findings. This is a most welcome development and an opportunity for our small pool of funded scientists who would like to maximize the impact of their projects. ME/CFS funding supplements are also available to researchers whose projects aren't funded specifically for ME/CFS but could still be used to add ME/CFS subjects (e.g., ME/CFS subjects added as a comparison group) to expand on findings from their existing funded application. In this way, NIH is attempting to attract non-ME/CFS researchers to the field.

To keep you up to date, conference announcements will be sent to our membership in broadcast emails throughout the spring and summer.

With best regards,

Fred Friedberg, PhD
IACFS/ME President

Welcome Message from Lily Chu, Interim Newsletter Editor

Dear All,

Happy Spring! Hopefully, if you are in the Northern hemisphere, Winter is now a delightful memory with more sunshine, warmer weather, and blooming plants taking over. Here in California, we do not experience as much seasonal fluctuations over the year as other parts of the planet but our days are definitely getting longer. Unfortunately, despite heavier rains this Winter, we continue to be in a drought; hence my pictures below showing both the greener hills nearby but also native/ low-water-requiring plants.

As many of you know, there is a lot going on nationally and internationally, all detailed below with contributions from our membership and beyond. Click on attachments and hyperlinked phrases to read more. If you would like to contribute something to our next Newsletter, planned for August, please contact us at [email protected]. Articles from outside the United States are particularly welcomed.

The organization continues in full swing putting together an exciting program for this October’s scientific conference in Fort Lauderdale, Florida, USA. Our keynote speakers will be Dr. Walter Koroshetz, Director of the US National Institutes of Neurological Disorders and Stroke and Chair of the Trans-National Institutes of Health ME/CFS Working Group, and, all the way from Norway, Dr. Øystein Fluge, Chief Physician of the Department of Oncology at Haukeland University Hospital. Dr. Fluge is internationally known for his leadership in the rituximab trials.

There is still time to submit research abstracts and workshop proposals! The deadline is May 16, 2016. We especially encourage submissions from professionals who are new to this field, younger, women, and/or from disadvantaged backgrounds as we may have a limited number of travel awards available. We also accept work on chronic fatigue in other medical conditions and life circumstances (e.g. aging, work-related) and in co-morbidities associated with ME/CFS (e.g. FM, OI, IBS) so we encourage you to send your colleagues in these fields our call for submissions.

Come to our meeting and learn about the latest clinical care methods and research discoveries! Network with old friends and new colleagues! Exhibit your product and services to a targeted audience! Help support the conference through donations andsponsorships!! (Whew! I think I’ve used up my allotment of exclamation points for the year.) You can register for a room now. Look for future e-mails as our Conference program is further refined.

Lily Chu, MD, MSHS
IACFS/ME Co-Vice President

P.S. How many ships have crashed at the mouth of San Francisco Bay, an often windy, foggy, treacherous stretch of water with rocky shores? To this day, an elite group of sailors, called bar pilots, board every ship coming in to guide them safely from the Pacific Ocean into the Bay. Answer at end. 


Board Activities:

If you have feedback on any Board activities (cheers or jeers), would like to propose an activity, or join a Committee, please write to [email protected].

  1. Dr. Susan Levine reports on the newly formed Medical Education Committee being formed and its planned activities. Read more: [Attachment #1]

  2. Treasurer Steve Krafchick continues to represent the Board at the US CFS Advisory Committee, which will next meet May 17 and 18 via publicly-broadcasted teleconference.

  3. Co-Vice-President Lily Chu represents IACFS/ME on the US Centers for Disease Control and Prevention’s Technical Development Working up putting together materials for medical education based on the US Institute of Medicine’s recent report. The TDW consists of 58 stakeholders, including patient groups, clinicians, researchers, federal agencies, and representatives from well-known medical education providers in the US (e.g. the American College of Physicians, the online database UpToDate). Co-Vice-President Staci Stevens is also involved as part of the Workwell Foundation.

    CDC sent out an initial survey of questions to stakeholders; this will be followed by telephone interviews and then a possible in-person meeting. The whole project is estimated to take 16 months to complete.

    What information about ME/CFS do you consider most important to convey to clinicians? Write us at [email protected] with your ideas.

Not such a sunny day but still beautiful……………………………………........................

In the Clinic:

  1. One Clinician’s Approach to Diagnosing Patients: Dr. Alison Bested of Canada writes about how she diagnoses patients with ME/CFS, including differential diagnoses to consider. [Attachment #2]

  2. Suicide and ME/CFS: Are patients with ME/CFS more likely to commit and complete suicide? A February 2016 article published in the Lancet from Roberts et al. suggests that ME/CFS patients are 6 times more likely to complete suicide than the general population. Lily Chu summarizes and comments on the results. [Attachment #3]

  3. US ICD-10 Issues Follow-up: Lily Chu has been in contact with Ms. Donna Pickett of the US National Center for Health Statistics to address ICD-10 issues in the US. IACFS/ME and other organizations may have an opportunity to give input on ICD-10 issues in the future. If you have experienced problems with ICD-10, please write us at [email protected].

  4. Griffith University Commercializing Screening Test: Board member Sonya Marshall-Gradisnik and her colleagues at the National Centre for Neuroimmunology and Emerging Diseases in Australia are in the process of commercializing a screening test for ME/CFS. The test is based on abnormalities they found in certain ion channels and receptors of cells. Read more about their efforts hereon their website and in this attachment. [Attachment #4]

  5. New ME/CFS Clinical Practice Guidelines from Alberta, Canada: Dr. Eleanor Stein recently collaborated with the Alberta Medical Association and the College of Physicians and Surgeons of Alberta to produce this clinical practice guideline.


  1. Research Abstract Compilation: As always, Dr. Ros Vallings has gathered abstracts of interest over the last few months and neatly organized them in the following attachment. Dig in to find some treasures! [Attachment #5]

  2. PACE Trial Concerns, Part 2: Mary Dimmock reports:

    “In the 6 months since journalist David Tuller published his series highlighting the serious concerns with the conduct of the U.K.'s £5 million PACE trial of chronic fatigue syndrome, criticism of the trial has continued to mount. Forty-three scientists have submitted a letter to The Lancet, calling for an independent reanalysis of the PACE data. Academics from outside the field have highlighted PACE as an example of the issues with sharing of research data. And in March, another extensive analysis of PACE’s study design was published by Sense About Statistics, a collaboration with the American Statistical Association. The paper concluded “The best we can glean from PACE is that study design is essential to good science, and the flaws in this design were enough to doom its results from the start.” Read more: [Attachment #6]

  3. Study Data Transparency and Sharing: For ME/CFS, concerns over the PACE trials are pushing the call for data transparency and sharing to the forefront. However, this is an issue that has been brewing for some time within the scientific and medical world and will have consequences for all stakeholders in the future. Lily Chu takes a wide-angle-lens look at the issue, drawing on recent recommendations from the US Institutes of Medicine and the International Committee of Medical Journal Editors. Read more: [Attachment #7]

  4. Portrait of the Medical Researcher as a Young Man (or Woman): How do we attract and retain young or new researchers to this field and ensure a robust pipeline of future investigators? World-famous, Pulitzer-Prize-winning Harvard biology professor Edward O. Wilson advises in his Letters to a Young Scientist ensconcing yourself in a relatively unexplored field is the way to achieve progress and fame as every discovery you make is likely to be significant. ME/CFS surely fits Wilson’s criteria but in practice, obstacles exist. Dr. Keith Geraghty of the United Kingdom writes about his experiences. [Attachment #8]

  5. PubMed Commons: Have you ever had read an article and thought about sending a comment/ question in only to miss the deadline for a letter to an editor? The US National Library of Medicine, which operates the database PubMed, now provides a quick and easy way to submit comments, get them approved instantaneously, and ensure that they will be read not only by the article authors but also by anyone in the future that comes across the article. If you have ever published an article in a PubMed-indexed journal, you are automatically granted permission to comment. Visit this link for more details and this link to sign up.

  6. US National Institutes of Health Early Career Reviewer Program: For many years, IACFS/ME and others have expressed concern about whether NIH grant review panels were made up of appropriately knowledgeable and experienced scientists. Grant review panels have improved over time and we would like to see that continued. But to do so requires a robust pool of potential reviewers. Dr. Vicky Whittemore of the National Institute for Neurological Disorders and Stroke writes about the how new or younger scientists can get involved in the grant review process, yielding benefits both for themselves and the field overall. [Attachment #9]

  7. US National Institutes of Health Intramural ME/CFS Study: As part of NIH’s re-invigorated commitment to ME/CFS research, an intramural study focusing on the clinical and biological aspects of post-infectious ME/CFS was launched recently. The Principle Investigator is Dr. Avindra Nath and the Lead Associate Investigator is Dr. Brian Walitt. An initial draft of the study was posted online followed by a discussion responding to questions raised by concerned patients and stakeholders. More about the study at this link..

  8. US National Institutes of Health Awarding Additional Supplements to Research Involving ME/CFS: (From NIH)
    “Several of the NIH Institutes involved in the Trans-NIH ME/CFS Working Group recently released a Notice of Availability of Administrative Supplements on ME/CFS. The administrative awards are intended to expand existing research on ME/CFS, or utilize and apply a new technology to study ME/CFS through supplements to NIH-funded grant awards. This solicitation is intended to bolster research on ME/CFS and is just the first outreach to the research community under new plans to revitalize this area of interest.

    For more information, please go to the NIH ME/CFS website. You can watch for other announcements to appear soon on the NIH website.”

    Supplements also apply to research grants that are not ME/CFS-focused already but could add a ME/CFS component (e.g. ME/CFS subjects as a control group or as an additional group for a potential test).

  9. CureME – a new international mailing list for research and other issues: With the recent passing away of Ray Colliton (see obituary below), a new mailing list has been started to distribute information quickly and internationally about new developments in ME/CFS and related fields. Read more at this link; signing up is free.

Medical Education:

As many patients and clinicians specializing in ME/CFS know, there is a dearth of clinicians knowledgeable about treating this condition. Even patients residing in major metropolitan areas have problems finding appropriate care. If we are to improve this situation, we must continue reaching out to and educating clinicians of every background at every stage of training and practice. Two recent efforts and a wish:

  1. Educating Students and Trainees: The New Jersey Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis Association, based out of the US, has, since 2009, sponsored an annual essay and scholarship competition among medical students and trainees in the state of New Jersey. The competition encourages students and trainees to learn more about ME/CFS and essays are required to be based on peer-reviewed articles. This year’s winner is Dr. Veeraraghavan J. Iyer, an aspiring psychiatrist. Read more from Dr. Ken Friedman: [Attachment #10]

  2. Educating Physical Therapists: Dr. Todd Davenport, Associate Professor of Physical Therapy at the University of the Pacific and a member of the Workwell Foundation, notes:

    “Physical therapists often use physical activity as treatment, and they are in position to spend a lot of time with their patients. These factors combine to make physical therapists potentially very important to help identify the clinical features of systemic exertional intolerance disorder (SEID), and to provide appropriate non-pharmacological treatments. In many situations, patients can access physical therapy services without a physician referral, which provides further significance to the ability of physical therapists to identify SEID.”

    Recently, Dr. Davenport, along with Workwell Foundation members, neuroscientist Dr. Mark Van Ness and Staci Stevens (also Co-Vice-President of IACFS/ME), joined by Lily Chu, presented a 2-hour session to an enthusiastic audience at the American Physical Therapy Association Combined Section national meeting in February. The session educated physical therapists about the new SEID criteria emphasizing the symptom of post-exertional malaise and objective cardiopulmonary/ metabolic abnormalities observed post-exertion. The talk was well-received with attendees asking many intelligent questions even past the time limit of the talk. Read more: [Attachment#11]

  3. Funding outreach to mainstream medical providers and young trainees: The IACFS/ME Medical Education Committee has briefly discussed how to reach various groups. Ideas suggested include in-person presentations at mainstream national healthcare professional meetings, like the one detailed above (which was partially self-funded), and online educational courses hosted on our website. Such efforts require financial support for registration and travel fees to conferences and for continuing medical education accreditation. Yet they could be quite effective. If you are interested in partnering with us on these or similar efforts, please contact the [email protected].

Correspondence and Perspectives:

“Brain on Fire: My Month of Madness” by Susannah Cahalan

Joseph Landson, a ME/CFS advocate who wrote his Masters thesis on the history of ME/CFS, reviews this best-selling book about one woman’s experience with autoimmune encephalitis and its implications for this field.

“What if the entire history of CFSME played out in 30 days, and had a happy ending? That’s one way of reading Brain on Fire: My Month of Madness, in which Susannah Cahalan describes her sudden onset of hallucinations and seizures, leading to a locked hospital confinement. Her doctors can only shrug elaborately until one of them finds Cahalan is not insane at all, but suffering from a treatable form of autoimmune encephalitis (AE), just discovered a few years prior. AE represents a whole new class of invisible illness, sharing patient experience – and perhaps even medical clues – with CFS/ME.”

Read more : [Attachment #12]

Announcements and Events:

  1. IACFS/ME member Ray Perrin, DO, was recently recognized by the UK Institute for Osteopathy with their Research and Practice award. Read the attached press release. [Attachment #13]

  2. The UK-based nonprofit organization, Invest in ME, will be holding a series of upcoming meetings, with some by invitation only and others opened to the public. Read more from Richard Simpson: [Attachment #14]

  3.  Dr. Charles Lapp is seeking a full-time clinician to join his practice in Charlotte, North Carolina, USA:

    “We are seeking a new associate who is interested in Fibromyalgia and Chronic Fatigue Syndrome. Our practice is nationally recognized for diagnosis, management and clinical research in these fields. We are growing and need another full time associate who is interested in both patient care and the business aspects of the practice. A part time physician is already in place in addition to the full time managing partner. We accept fee-for-service only, which eliminates all billing and insurance hassles, and allows us to spend more time with each patient. We do not work nights or weekends, and call is virtually nil. The practice is well suited to providers who enjoy working relationships with their patients, and who have backgrounds in family practice, internal medicine, physiatry, or perhaps pain management. If you or a colleague might be interested in this position, please send a resume to Hunter-Hopkins Center at 704 543 8547 (fax) or [email protected].”

Obituary: Ray Colliton

We are saddened to hear of the death of Mr. Ray Colliton, who passed away January 29, 2016 at age 68. Mr. Colliton played a key role in shaping and managing the website Co-Cure and the listservs connected to it. Co-Cure was started in 1996 by a small group of dedicated patients and advocates to provide a way for patients, clinicians, and researchers to communicate with each other and learn about the latest research, events, or other issues associated with ME/CFS. Read more about Mr. Colliton’s life and contributions in Dr. Maryanne Spurgin’s tribute

Answer to trivia question: As many as 300 ships have been wrecked in 350 years of recorded history. The remains of the King Philip, Ohioan, Lyman Stewart, and Frank Buck can be seen at low tide on Ocean Beach some days.