ME/CFS Primer/Education Newsletters Volume 10, Issue 1 • January 2017

Volume 10, Issue 1 • January 2017

January 30, 2017
 
IACFS/ME Newsletter
Volume 10, Issue 1 – January 2017
Editor Alison C. Bested MD FRCPC
 

Contents


IACFS/ME President’s Letter

Dear Members,

It’s been an eventful season for IACFS/ME and the community. Our fall conference in Fort Lauderdale attracted over 300 professionals, patients, family members and supporters. The professional attendance was excellent, but the patient numbers were lower than previous meetings—perhaps due to the many advocacy commitments and events occurring over the past several months. Overall, conference feedback from our attendees as well as online commentaries have been quite favorable.

Conference highlights included the presentations of Oystein Fluge and Olav Mella, the Norwegian physician-scientists who have published two clinical studies suggesting the efficacy of rituximab to treat ME/CFS. A large randomized trial now underway is expected to be completed by the end of 2017. Encouragingly, our keynote, Vicky Whittemore, announced that a new NIH funding opportunity for ME/CFS will be posted shortly. (Follow-up: we have a new $29.5 million program announced by Vicky at the CFS Advisory Committee meeting [1/12-1/13/17] to develop 2-3 collaborating research centers! The posting should occur later this month.) Vicky ably answered an extended 45 minute period of pointed questions at the patient conference after her keynote talk.

Interesting new conference topics included: cognitively triggered postexertional malaise, alterations in the ME/CFS microbiome, and a presentation/discussion (Lenny Jason, Cindy Bateman, Jon Kaiser) on CFS, SEID, and ME case definitions. John Chia presented a first time workshop on enteroviral Infection in ME/CFS. Also the topic of mitochondrial abnormalities in ME/CFS (Jon Kaiser, Ron Davis, Nancy Klimas and Dikoma Shungu) was discussed during a lunch panel that attracted an overflow audience.

Tony Komaroff did his usual masterful job in presenting a very accessible and plain spoken conference summary on Sunday. Please Tony, don’t ever retire from your retirement! We need you. David Tuller’s acceptance speech for his IACFS/ME special service award was followed by applause and screaming so intense that I thought we had a rock star on stage.

On January 13 at the US CFS Advisory Committee meeting in Washington, DC, I gave an invited 30 min presentation summarizing conference highlights. The slides are available in this newsletter.

On the publishing front, our association journal, Fatigue: Biomedicine, Health and Behavior has published an online critical commentary of the PACE trial (Wilshire et al; 2016) which will be followed in the near future by a response/rebuttal from Peter White, the lead author of the PACE trial.

Finally, we have begun a search for the next conference site. Generally what we’re looking for is a major travel destination and advance donor funding to ensure financial support for this expensive endeavor. US cities are more feasible, but an international site is possible with adequate donor support. Please forward any ideas you may have to me at: fred.friedberg@stonybrookmedicine.edu

Best wishes to all in the New Year!

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


Welcome Message from the Editor

Welcome to our first newsletter of 2017! Since our last Newsletter in August, there have been lots of activities going on in the ME/CFS world. Read below for the details!

For the Newsletter, we are gradually transitioning editors from Dr. Lily Chu to Dr. Alison Bested.

Bodega Bay, California in Fall……glorious sun in abundance even in November.

 
 

Board Activities

  1. October 27-30, 2016 Biennial Scientific Conference: Thank you to all our sponsors, participants, attendees, and members for making the 2016 Scientific Conference a success! We especially want to thank our Florida hosts, Dr. Nancy Klimas and her team at the Institute for Neuroimmune Medicine and Nova Southeastern University for their sponsorship of the meeting! The unseasonably windy weather in Orlando precluded warm, sunny visits to the beach but meant attendees cozily sequestered in the hotel were able to meet and talk at leisure between the exciting talks and informative sessions.

    Almost 300 clinicians, researchers, other professionals, and patients/ supporters attended the meeting, coming from all over the US and over 15 countries. Over 50 talks/ symposiums occurred along with 80 posters presentations.

    1. Summaries of the conference: As is our custom, on the last day of the meeting, Dr. Anthony Komaroff from Harvard University provided an excellent 30-minute summary of conference research presentations he found intriguing. Dr. Komaroff's slides and audio presentations can be found here under the tab "Agenda" along with an alternative summary supplied by Dr. Ros Vallings of New Zealand. Note that summaries cover primarily oral presentations and not poster presentations.

    2. Media Coverage: The conference generated a number of media mentions. Some examples of coverage include an article by Science reporter Meredith Wadman, posts on Health Rising by Cort Johnson, abd multiple articles (1, 2, 3) on Medscape by Miriam Tucker, For Medscape, you will need to register on their website to read the articles but registration is free. Interestingly, Tucker's article on biomarkers was, at times, the #1 article viewed by internists over several weeks, which just goes to show there is a lot of pent-up demand for information about ME/CFS in the general medical community. Also exciting was a visit from a Norwegian television crew: they are working on a documentary about Drs. Olav Mella and Øystein Fluge and their research concerning rituximab and ME/CFS. They have followed the 2 scientists for several months and hope to follow them for several more with the goal of airing the documentary in the near future.

    3. Help Us Plan Our Next Conference! Did you enjoy the conference but wished it were closer to your city? Did you want to attend but lived too far away? Consider bringing our next conference to your city, state, or country! Organizing and operating a conference takes time, energy, and resources so as soon as one conference ends, we begin planning for the next one, for 2018 or 2019. We are looking for places that are major travel destinations and also may have sponsors who are willing to help support the conference financially. We have held conferences outside the US before (e.g. Canada in 2011, and prior to that, Japan and Norway) so a non-US location is not out of the question. If you have an idea, write us at membership@iacfsme.org.

  2. Dr. Fred Friedberg's Presentation at US CFS Advisory Committee Meeting January 13, 2017: IACFS/ME's President, Dr. Friedberg, presented a 30-minute summary of Conference research/ proceedings to the US CFS Advisory Committee (CFSAC) in January 2017. CFSAC consists of scientists, clinicians, patients, and others concerned with ME/CFS, meets twice a year, and comes up with recommendations for how the US government can address ME/CFS effectively. Federal officials from a variety of agencies attend CFSAC to contribute ideas and listen. The public is also invited every meeting to submit oral or written testimonies. The meeting is usually broadcasted live online and also archived to be accessed later. To see Fred's presentation, click here and for a record of past meetings, see this link.

  3. 2016 Biennial Conference Award Winners: Every conference, IACFS/ME is proud to recognize the members of our community who have contributed substantially to this field. This year, we recognized 7 extraordinary people. Click on each person's name to read more about them and their achievements. Our President, Fred Friedberg, was also presented with a special service award for the many years he has served this organization, first as a Board member and then as President. If there is someone you would like to see honored in the future, keep them in mind and nominate them for our next Conference’s awards.

    1. Governor Rudy Perpich Award – Dr. Lucinda Bateman

    2. Dr. Nelson Glantz Outstanding Clinician Award – Dr. Ros Vallings

    3. Junior Investigator Award – Dr. Sharni Hardcastle

    4. Special Service Awards – Mr. Cort Johnson, MS; Dr. David Tuller

    5. Special Service Award – Dr. Fred Friedberg

  4. Call for Board Nominees and Committee Members: Do you want to increase your professional network, make new friends, learn/ improve leadership and other skills, or contribute to advancing progress in ME/CFS and related conditions? Consider joining our Board or volunteering for a committee. We are always looking for enthusiastic people with ideas and drive. Board and committee members must be committed to the mission of IACFS/ME: to assure that clinical care, medical research, and public policy are backed by the latest and most accurate science. Otherwise, we encourage people of all backgrounds – whether professional, national, ethnic, sex/gender-related, senior or junior, etc. -- to apply. For more information, write our President Dr. Fred Friedberg at membership@iacfsme.org. If you know someone who would make an excellent candidate, please write us also or encourage them to write!


Research

  1. US NIH Announces $30 Million Over 5 Years To Be Spent On Research Centers: During the January 12-13 US CFS Advisory Committee Meeting, Dr. Vicky Whittemore of the National Institutes of Health (NIH) announced that $29.5 million will devoted to funding 2-3 ME/CFS collaborating research centers and a data management center. These will be 5-year projects. Formal announcement is expected later this month. A webinar for interested researchers will be held in February with the deadline for applications due in May. Funding of successful applications is slated to start in September 2017. Monitor the Trans-NIH ME/CFS Working Group page for future details. These funds are in addition to any funds given to researchers who apply successfully via other program announcements or mechanisms.

  2. US NIH and CDC Sponsor Common Data Elements Project: During our recent conference, the US NIH and Centers for Disease Control and Prevention hosted an evening session to introduce their Common Data Elements (CDE) project for ME/CFS. NIH's National Institute of Neurologic Disorders and Stroke (NINDS) created the CDE project to encourage researchers studying a specific medical condition to collect common, key pieces of information during their studies. The purpose of CDEs are "to facilitate the preparation of data collection tools, reduce study start-up time, promote systematic data collection, improve data quality, and facilitate data sharing across clinical research studies."

    International and US-based disease-specific experts are convened by NIH to help select, develop, vet, and disseminate CDEs. At the conference, interested attendees were invited to apply to be part of the CDE group for ME/CFS; several IACFS/ME members will be part of this effort. This project is anticipated to take place over at least the next year. To learn more about CDEs and for examples of CDEs in other conditions, see the NIH NINDS CDE main website. Also see this 2012 “Minimal Data Elements” for ME/CFS research article by Jason et al.

  3. Fall 2016 Abstract Round-up: Dr. Ros Vallings compiled interesting abstracts published over Fall 2016 here.

  4. National Survey of ME/CFS Patients Commissioned by Japanese Government: In 2014, the Japanese Ministry for Health, Labour, and Welfare commissioned a national patient survey of ME/CFS patients in Japan. Japan ME Association president Mieko Shinohara graciously comments on the study and summarizes the survey results here for us, which revealed that 30% of ME/CFS patients in Japan are severely ill patients. The study was originally published in Japanese in the July 2015 issue of Normalization.

    (Valuable research concerning ME/CFS is "lost" to the English-speaking scientific and medical communities because they are not published or translated into English. This is despite English's status as the lingua franca of science. Consequently, if you read a fascinating research article in another language and would like to summarize the results for us in a future edition of this Newsletter, we would welcome that very much. Contact us at newslettereditor@iacfsme.org.)

  5. Controversial Speaker Dr. Edwin Shorter Invited to Address US NIH Intramural Research Group: Last November, NIH’s Intramural Research group invited medical historian Dr. Edwin Shorter from the University of Toronto to speak as part of its ME/CFS Interest Group lecture series. The announcement of the talk was met with controversy given Shorter’s public statements concerning ME/CFS in 2015. Mary Dimmock explores why the invitation was controversial and the community’s reaction.

    Editor’s note: This action is concerning because, similar to the rest of the medical/ scientific community, NIH directors, program officers, researchers, and other staff are likely not well-acquainted with ME/CFS and thus are vulnerable to developing the wrong impressions or ideas. At the same time, they are the ones making or influencing decisions about which areas research funding will be allocated to and who will review grants. NIH staff also help guide researchers through the grant application process. If they are not educated accurately about ME/CFS, that could lead to multiple and long-term institutional issues. It is the Editor’s fervent hope that NIH will learn from this episode and do better in the future.

  6. Opinion: The Need for Consensus on a Research Case Definition: In response to the Common Data Elements projects, Mary Dimmock writes that the first step should be for NIH, CDC, and researchers to agree on a research case definition. Read her opinion here.


In the Clinic

  1. Clinical Case Reports at the Conference: One of the most popular and highly-rated sessions at our conferences is the clinical cases discussion where leading ME/CFS specialists present interesting patients they have taken care of and highlight clinical pearls. This meeting, several participants presented fascinating clinical situations they encountered over the years. Read this link to learn about heavy metal toxicity mimicking ME/CFS, West Nile Virus leading to ME/CFS and elevated liver enzymes due to low-dose naltrexone. We will cover another 3 clinical case presentations in the April Newsletter.

    With the advent of evidence-based medicine, clinical case reports, disparaged as "anecdotal evidence", have gradually fallen out of favor in some circles, but we should not forget that practice-changing discoveries often originate from case reports, e.g. the first reports of AIDS and HIV, successful treatment of H. Pylori by antibiotics, or statin-induced myopathy. Now the pendulum has swung back and a few new journals have sprung up especially to publish case reports. We also encourage anyone interested in publishing a case report to contact us at newslettereditor@iacfsme.org.

  2. Helping Patient Prepare for Medical Appointments: During her years in medical practice, Board member Lily Chu observed that time was often short and at a premium during clinic visits. Currently, the time allotted to medical appointments in the United States averages 15 minutes. Consequently, Lily worked on devising strategies she, her family, and her patients could use to optimize those 15 minutes. During this last conference, she gave a talk about this topic which was well-received by patients and their supporters.

    Many ME/CFS specialists already have established forms that patients are asked fill out before visits or protocols they follow to maximize the time they have with patients. However, many other medical clinics do not have these systems in place and it might be useful to educate patients on what information doctors need or want during a medical appointment, how to communicate well with healthcare professionals, and how to prepare for appointments. The US National Institutes of Health has a whole page with resources on this topic that might be useful to refer patients to.

  3. Pediatric ME/CFS: Making Education Part of the Treatment Plan: Clinicians usually ask their pediatric CFS/ME patients, "How is school going?" What they should do is make education a part of a child's treatment plan. Dr. Faith Newton, Associate Professor of Education at Delaware State University in the United States and the mother of a teenager, writes about the effects of ME/CFS on a child's education and what clinicians can do to help. Click this link to read her article and this link for an example of a letter a clinician can write to assist pediatric patients and their families.


Announcements

Two Studies Looking For Participants.

  1. What external factors may be influencing the development and expression of demoralization and depression-like symptoms in ME/CFS?

    Dr. Leonard Jason of DePaul University writes:

    Our recent paper “Mortality in patients with ME and CFS” found patients are significantly at risk for earlier all-cause mortality with the top three causes of death being suicide, cardiovascular problems, and cancer. This is an alarming issue and we would like your help understanding what factors may be contributing to this earlier mortality.

    In addition to developing cancer and cardiovascular problems, some individuals with ME and CFS exhibit symptoms similar to demoralization and depression due to the major symptoms of their primary physical illness and the associated limitations and stigma experienced.

    We would like your help in understanding what external factors may be influencing the development and expression of demoralization and depression-like symptoms.

    We would like to invite all individuals 18 or older with ME and CFS to complete our questionnaire (link below) assessing several factors including access to and quality of healthcare, illness severity, financial impact, and social interactions with both supportive and non-supportive people.

    We hope the results of this study will help us better understand experiences with this illness and the types of barriers patients face in receiving quality care and support.

    Access the survey at the following link: https://redcap.is.depaul.edu/surveys/?s=TNPC3XR8HE

    Please contact Stephanie McManimen (smcmanim@depaul.edu; 773-325-4962) with any questions

  2. Are you or do you know of a twin or twins affected by ME/CFS?

    A Canadian researcher is looking for identical twins affected by ME/CFS for a study he is conducting. He has asked the National ME/FM Action Network, based in Canada, for help. Recognizing that this request will likely come up again and again, the organization is starting a twins registry. Please help. If you know of twins where one or both have ME/CFS, send a note to mefminfo@mefmaction.com or ask the twins to do so. Twins can be from anywhere in the world. If you are a researcher looking for twins, you can also send a note to the same e-mail address.

    Here is the notice from the National ME/FM Action Network:
    http://mefmaction.com/index.php?option=com_content&view=article&id=531

    [Twin studies have been instrumental in understanding the role of genetics and environment factors in various medical conditions.]

Carol Head, Solve ME/CFS Initiative CEO, Selected For O Magazine's "14 Health Heroes Who Are Changing Healthcare As We Know It"
O, The Oprah magazine, was founded by well-known US media personality Oprah Winfrey. It is published monthly and is circulated widely in the US. Join us in congratulating Carol and read more here.

Movie "Unrest" Makes Its World Premiere at US Sundance Film Festival
Unrest, a documentary by ME patient Jennifer Brea, will premiere this week at the Sundance Film Festival. The film's intimate journey and international cast of patients will bring the disease and the millions that suffer from to a wide audience. Jennifer aims to launch an impact campaign to advocate for more public and private research funding, and to bring the film to hundreds of medical schools and universities around the world. To learn more visit: http://unrest.film

A TED Talk Jennifer gave about ME also launched this week. You can watch that here:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

fb.com/unrestfilm
twitter.com/unrestfilm
instagram.com/unrestfilm

 

Want to see YOUR name in this Newsletter? Consider writing a short article or sponsoring this Newsletter! The Newsletter is not meant to be take the place of our peer-reviewed journal, Fatigue: Biomedicine, Health, and Behavior so do not send highly technical articles. Otherwise, we are open to all types of interesting commentary or perspectives on scientific, clinical, health policy, legal, educational, etc. issues related to ME/CFS or associated co-morbidities (e.g. fibromyalgia, orthostatic intolerance, irritable bowel syndrome). Want to tell the ME/CFS community about your non-profit’s activities? Your take on research article? A clinical observation you have found useful? Want to make the ME/CFS community aware of your company’s products, services, or mission? Do it here! Write us for specific guidelines on length, when to write, and what we look for. Send articles and sponsorship proposals to newslettereditor@iacfsme.org.

Announcements and Events may also be sent to newslettereditor@iacfsme.org. The next Newsletter is expected to be published in December.
 

Disclaimer: IACFS/ME's mission is to stimulate and promote exchange, discussion, and dissemination of information around any and all aspects of ME/CFS, FM, and associated medical conditions. The Newsletter helps support that mission and we encourage submissions to the newsletter not only from our current membership but any interested party. IACFS/ME is not responsible for statements made by any contributor. Statements or opinions expressed in the Newsletter reflect the views of the author(s) and are not the official stance of IACFS/ME or the IACFS/ME Board unless otherwise stated. Mention and/or discussion of a test, treatment, procedure, product, person, website, or service in this Newsletter is not equivalent to an endorsement by this organization.

The medical information in this Newsletter is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Also recognize that information can change and that this Newsletter may not have been updated to incorporate the most current information. IACFS/ME expressly disclaims responsibility, and shall have no liability, for any damages, loss, injury, or liability whatsoever suffered as a result of your reliance on the information contained in this site.

This Newsletter is an Official Publication of the International Association for CFS/ME (IACFS/ME), and is provided to association members and friends. Any comments, concerns or interest in publishing articles should be directed to newslettereditor@iacfsme.org or IACFS/ME, 9650 Rockville Pike, Bethesda, MD 20814.

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