ME/CFS Primer/Education Newsletters Volume 9, Issue 2 • September 2016

Volume 9, Issue 2 • September 2016

September 7, 2016
IACFS/ME Newsletter
Volume 9, Issue 2 – September 2016
Editor Alison C. Bested MD FRCPC
 

Contents


IACFS/ME President’s Letter

Dear Members,

We have an exciting program in place for the 12th IACFS/ME International Research and Clinical Conference to be held in Fort Lauderdale, Florida, USA, October 27-30. Registration is now up and running! Our keynote speaker, Vicky Whittemore, is a major player at the National Institutes of Health (NIH) with respect to new CFS/ME research initiatives. She is expected to give an in-depth view of plans and programs for CFS/ME with perhaps some surprising new developments (pending NIH approvals). We also have Norwegian physician and researcher, Oystein Fluge, as our plenary speaker, who was the principal investigator of the two published Rituximab trials that show promise as an intervention for CFS/ME. His collaborator, Olav Mella, will also have a speaking role on the subject.

Pragmatic Clinical Focus
In keeping with feedback from the last conference, a pragmatic clinical focus will be present throughout the conference with informative workshops (e.g. orthostatic intolerance, acute and chronic enteroviral infection, CFS/ME diagnosis and management) and a two hour difficult clinical cases seminar chaired by Nancy Klimas with an invited panel of high profile ME/CFS clinicians. In addition, our treatment studies session will include clinical practice issues. We are asking all presenters to include a “clinical implications” slide (as appropriate) so that our clinical professionals can consider the presented research with respect to their patients.

NIH and CDC Presentations
Vicky Whittemore, our keynote, will also be chairing a Friday evening session titled: “Common Data Elements (CDEs) for Standardized Testing and Clinical Studies.” In addition, Beth Unger, Chief of the Chronic Viral Diseases Branch at the Centers for Disease Control and Prevention (CDC), will play an important role in this meeting with talks during the public health research session as well as a two hour lunch panel focusing on the CDC’s Multi-site Clinic Assessment of ME/CFS.

Travel Awards for New Investigators
For the first time, IACFS/ME has received a NIH conference grant that is funding six early stage investigators to attend the meeting. This is exceedingly important as we have very few new researchers on the horizon showing interest in CFS/ME research. Awardees will receive guidance and mentoring at the meeting to better acquaint them with our scientists, clinicians and patients.

Revamped Patient Meeting
We have also made our patient meeting day into a combined patient and professional meeting with direct benefits to patients (and their families). Our keynote speaker is scheduled for this day and our afternoon session will be devoted to several 1 hr 45 min workshops on patient issues (self-management skills such as meditation and pacing), as well as combined patient and professional workshops on ME/CFS legal issues, global advocacy, and educating students who have ME/CFS.

One Day Pre-conference Sponsored by Dr. Nancy Klimas
We are also pleased to confirm that Nancy Klimas will be sponsoring a one day pre-conference on October 26 at the Institute for Neuro Immune Medicine at Nova Southeastern University, also in Fort Lauderdale (http://www.nova.edu/nim/iacfs-2016-preconference/index.html). We wish to thank Nancy for her strong support of the conference.

I look forward to seeing you at the conference!

With best regards,


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


Introducing IACFS-ME’s New Newsletter Editor - Dr. Alison Bested

Happy Summer Everyone!

I would like to thank Drs. Roz Vallings and Lily Chu for help getting me started as the new editor.

By way of introduction to you I have included a short bio. 

I graduated from the University of Toronto's Haematological Pathology residency program and passed the Royal College of Canada's specialty board examinations in Haematological Pathology in 1984. I am one of only 100 Haematological Pathologists in Canada. My residency training covered a wide variety of areas including: Immunology, Blood Banking, Genetics, Anatomical Pathology, Internal Medicine and Haematology both clinical and laboratory.

For the past 25 years my medical specialty practice as a hematologist has been dedicated to patients who have the complex medical conditions: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, Lyme disease and Multiple Chemical Sensitivity. Over the years I assessed and treated thousands of patients with these medical conditions. I am licensed to practice medicine in the provinces of Ontario and British Columbia where I continue to work as a Medical Consultant and as an Independent Medical Examiner.

The best part of my practice are my groups. I have an education and support group to teach patients about their illnesses and what can help them better manage their illness e.g. how to physically pace activities and rest periods. I have a second emotional support group where we use tools such as medical cognitive behavioural therapy and expressive therapy to help patients cope emotionally with having a chronic physical illness. I call this work emotional energy conservation.

I was chosen by Health Canada to participate on the Expert Medical Consensus Panel that wrote the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. This consensus definition was published in the Journal of Chronic Fatigue Syndrome in 2003. In the literature this is known as the Canadian Consensus Definition of ME/CFS and is used worldwide by clinicians and researchers.

I was one of the authors of the 2014 ME/CFS Primer for Clinicians published by the International Association of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This summary publication is an updated version of the Canadian Consensus Definition of ME/CFS.

I wrote two books with co-authors that were published: "Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia", 2nd Edition in 2008 and "The Complete Fibromyalgia Health Diet Guide and Cookbook" in 2013.

Recently published was the peer reviewed article: Bested, Alison C., Marshall, Lynn M. Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians. Reviews on Environmental Health, Volume 30, Issue 4. November 2015: pages 223-249.
http://www.degruyter.com/view/j/reveh.2015.30.issue-4/reveh-2015-0026/reveh-2015-0026.xml

Currently I have the academic rank of Clinical Associate Professor in the Department of Medicine at the University of British Columbia in the Faculty of Medicine.

I look forward to stimulating your thinking and further thoughtful discussions about ME/CFS and related issues.

If you would like to contact me directly please email me at: alisonbested@gmail.com

With the newly released study by Robert Naviaux and his team or researcher showing that patients with ME have a "chemical signature" that can distinguish patients with ME/CFS from normal people, these are exciting times for ME. See Research Section below.

I look forward to meeting and getting to know some of you at the next IACFS Conference in Fort Lauderdale where I have the privilege of giving an educational workshop.

It will be a great meeting - as always.

See you there!

Sincerely,
Alison C. Bested MD FRCPC
Editor IACFS Newsletter

Board Activities

  1. October 27-30. 2016 Scientific Conference: The Board and volunteers have been working diligently to put the finishing touches on our conference program. We received a bumper crop of research abstracts and workshop proposals this year and anticipate an exciting, informative conference. A sample of what to expect: vibrant guest speakers (Drs. Vicky Whittemore, Olav Mella, and Oystein Fluge), important special interest groups (on international advocacy, research networks, medical education), and stimulating research symposiums (case definition, community-engaged research, Gulf War Illness). We continue our tradition of providing a rest and relaxation room for all attendees and this year, patients and their supporters can choose to attend a variety of workshops during the afternoon.

    Register before September 26 and receive a lower-priced registration fee! Rooms may also be booked now at the Westin Fort Lauderdale Beach Resort at special conference rate. Don’t forget to make time for Nova Southeastern’s research open house, hosted by Dr. Nancy Klimas and her colleagues, the day before on October 26th! See the Announcements Section below for more information about the event at NSU.

  2. US National Institutes of Health Request for Information: In May, the US NIH’s Tran-NIH ME/CFS Working Group asked clinicians, researchers, patients, and other interested parties to submit testimony related to emerging needs and opportunities, challenges or barriers, and gaps in the field of ME/CFS research. The purpose of this solicitation is to help NIH formulate a research plan and prioritize efforts. You can read IACFS/ME’s submission in the following attachment. NIH will also be publishing a summary of submissions online. [Attachment #1]

  3. US Centers for Disease Control and Prevention (CDC) Technical Development Workgroup: The Workgroup will be meeting September 26 in Atlanta, Georgia to discuss how to translate materials from US Institute of Medicines report on diagnosis into educational materials busy clinicians can use in their offices. IACFS/ME is represented by our Co-Vice-President, Dr. Lily Chu. If there are points you especially think are important for general practitioners to know about, please send your comments to Newslettereditor@iacfsme.org. We specially want to hear from our researcher and clinician members who are not members of the Workgroup.

  4. Medical education sessions at the Conference: Medical Education Subcommittee Members Dr. Susan Levine and Mary Dimmock will be moderating sessions on medical education during the Conference. Sue’s presentation will focus on development of fellowship training programs while Mary’s will focus on international medical education that can reach non-ME/CFS specialists. Please attend these sessions if education is a topic you are passionate about!

  5. Nominate clinicians, scientists, and advocates for our biennial awards! Every scientific meeting, we honor clinicians, scientists, advocates, and others who have contributed so much to this field. See the awards and past winners. Nominate someone by sending us their name, contact information, and few paragraphs (less than a page) why they deserve an award. Winners will be announced at our banquet October 29th during the conference. Candidates can be from anywhere around the world and need not attend the conference to win. In the latter case, they or we can appoint a representative for them.

  6. Asking the US CDC to link to the IACFS/ME Primer on their website: Recently, Denise Lopez-Majano spearheaded an effort, joined by multiple other patient groups, asking CDC to link to the IACFS/ME Primer from their website. Ms. Lopez-Majano cited several non-ME/CFS CDC webpages that link to non-governmental patient and professional organizations. IACFS/ME supports these efforts as there are very few materials that portray ME/CFS accurately and offer practical diagnosis and management advice for primary care clinicians.


In the Clinic

  1. Death and ME/CFS: In the last Newsletter, Dr. Lily Chu wrote about the suicide and ME/CFS. One recurring theme is the lack of solid, evidence-based information about deaths in ME/CFS. About a week later, LigaSFC, an organization of people affected by ME/CFS based in Spain, and Dr. Juan Jimeniz-Ortiz comes out with a survey about this very topic. They found that the incidence of suicide and depression among ME/CFS patients was about 6 and 14 times higher, respectively, than the general Spanish population. Here is an English synopsis of the study. If anyone has a good (not Google) translation of the original document, please send IACFS-ME a copy at membership@iacsfme.org so we may share it with everyone.

    We also were notified by an astute reader that the US NIH Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) document now includes a column denoting mortality rates drawn from the 2014 National Vital Statistics System. Surprisingly, there is a figure of “16” for ME/CFS. Given the various vagaries of how death certificates are filled out and analyzed, Lily thinks this is a low-ball figure but it is still worth noting that NIH is trying to track this data.

  2. US CDC Opioid Guidelines: In the US, over the last 15 years, there has been a steep rise in the prevalence of addiction and deaths from prescription opioids. In response the US government asked the CDC to compose and disseminate guidelines concerning how to prescribe and monitor use of opioids safely. Read more about the guidelines and how they might impact ME/CFS patients and clinicians. [Attachment #7]

  3. Differences in the gut microbiome ME/CFS: Dr. Alison Bested comments on the recent paper by Drs. Ludovic Giloteaux and Maureen Hanson. See the attachment. [Attachment #2]

  4. US Federal Agency Downgrades Evidence for CBT and GET for patients fitting Fukuda case definition: In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its 2014 ME/CFS evidence review. After excluding Oxford studies, this Addendum significantly downgrades its original conclusions, finding that there is insufficient evidence to determine the benefit of graded exercise therapy (GET) on any outcome. It also finds very little evidence of benefit of cognitive behavioral therapy (CBT). These findings have tremendous implications for medical education and the conclusions of other evidence reviews. For instance, even today, CBT and GET are widely recommended in mainstream "evidence-based" medical guidelines, based on Oxford studies like PACE and on evidence reviews like the original AHRQ and the Cochrane Collaboration reviews that relied heavily on Oxford studies. These reviews and the resultant medical education recommendations ignore patient surveys showing harm from these therapies and also ignore the research demonstrating that ME/CFS patients experience an abnormal system-wide response to even trivial exertion. For more information on the findings of the Addendum and its implications, read the report at OccupyME.

    Some medical education sites may be using these terms to refer to some other form of talk therapy and "exercise," not PACE style CBT and GET. But the ambiguity in what is actually being recommended and its expected benefit creates medical misunderstanding and a risk of harm for patients, especially given the lack of published evidence for these other approaches and the volume of evidence for PACE style CBT and GET. Recommendations for talk therapy and any kind of “exercise" or activity management must be precise in terms of the recommended approach, the expected impact and benefit, the potential harm, and any contraindications, particularly for severely ill patients.


Research

  1. Fatigue: Biomedicine, Health, and Behavior: Dr. Fred Friedberg, the Editor our our journal, updates us on its status and progress. Fred also welcomes scientists and clinicians interested in serving as editors or peer reviewers for the journal. Read the attachment. [Attachment #6]

  2. Research Abstracts Compilation: Dr. Ros Vallings continues her tradition of providing members with interesting and compelling abstracts about or related to ME/CFS she has come across over the last few months. See the following attachment for Ros’ highlights and details. [Attachment #3]

  3. May 2016 Invest in ME Synopsis: Our roving, intrepid correspondent Dr. Ros Vallings once again gives her take on the new developments on the other side of the Atlantic. Read the attachment for details! [Attachment #4]

  4. New Solve ME/ CFS Initiative (SMCI) Registry: Last month, Dr. Lily Chu had the pleasure of speaking to Dr. Zaher Nahle, SMCI’s Vice President for Research and Scientific Programs, about their new Registry. Lily asked questions from both a patient, clinician, and researcher perspective. To read what transpired, see the attachment. [Attachment #5]


Announcements

The Institute for Neuro Immune Medicine (INIM) at Nova Southeastern University (NSU) is proud to host “Complex Neuro Inflammatory Conditions: GWI and ME/CFS”, a day-long event on Wednesday, October 26th from 10 AM to 7:30 PM, on the main campus of Nova Southeastern University in Davie, Florida.

As the “local” hosts for the IACFS-ME 2016 scientific conference, the INIM will showcase INIM researchers, students and physicians with poster presentations and panel discussions on various aspects of our work on ME/CFS and GWI. Highlighting a theme encouraging collaboration, the INIM team and fellow NSU collaborators ,will host a panel discussion of leaders from the Centers for Disease Control, National Institutes of Health, Department of Defense, Veterans Affairs and Open Medicine Foundation to examine the power of collaboration in understanding complex medical conditions such as GWI and ME/CFS.

This event is open to any attendee of the IACFS/ME meeting, as well as the public first come first serve. A registration fee of $25 will cover lunch, beverages and an invitation to our wine and cheese fundraiser at the end of the day to raise funds for ME/CFS Gene Research. There will also be a webcast available to those unable to attend in person.

For more information, please visit our website www.nova.edu/nim. Registration for this event will be online and will begin the first week of September.

Congratulations to Ms. Marj Van de Sande! The Governor General of Canada, Queen Elizabeth II's official representative in Canada, recently awarded Ms. Van de Sande the Sovereign's Medal for Volunteers. The Medal honors "the exceptional volunteer achievements of Canadians from across the country in a wide range of fields." Ms. Van de Sande served as Director of Education for the National ME/FM Action Network from 1995 – 2004 and then as an advisor for them until 2010. During that time, she was also instrumental in helping to synthesize information for and edit documents related to the Canadian Consensus Criteria and the Myalgic Encephalomyelitis International Consensus Criteria. Please join us in congratulating her.

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.

All rights reserved. This publication is protected by United States copyright and other intellectual property laws and may not be reproduced, rewritten, distributed, re-disseminated, transmitted, displayed, published or broadcast, directly or indirectly, in any medium without the prior written permission of the IACFS/ME.