ME/CFS Primer/Education Newsletters Volume 8, Issue 2 • August 2015

Volume 8, Issue 2 • August 2015

August 24, 2015
Volume 8, Issue 2 • August 2015
IACFS/ME Newsletter
August 2015

Editor
Rosamund Vallings, MNZM, MB BS
New Zealand ME/CFS Association

CONTENTS

IACFS/ME President's Letter

Welcome Message from Ros Vallings, newsletter editor

History
Board Activities

Primer Committee
Research
Journal
Webinars etc.
Correspondence
News
Obituary
Grants and Awards
Next Newsletter
Help Support IACFS/ME and Introduce Your Products/Services
Conferences, Meetings, etc.

Book Review


IACFS/ME President’s Letter

Dear Members,

We are actively involved in the early planning stages for the 16th IACFS/ME international research and clinical conference which will be held on Oct. 27-30, 2016 at the Westin Fort Lauderdale Beach Resort hotel in sunny Ft. Lauderdale, Florida, USA. Link to hotel reservations for 2016 conference:
 
https://www.starwoodmeeting.com/events/start.action?id=1507133892&key=2C586438

We would also like to proudly announce a one day CFS/ME pre-conference on Oct. 26th at Nova Southeastern University also in Ft. Lauderdale that will be sponsored by Nancy Klimas, one of our pre-eminent biomedical researchers and active clinicians. This combination of forces between our international research and clinical conference and the one day biomedical pre-conference promises to be an exciting and unique opportunity to learn about the latest developments in research and patient care.

Anticipated Highlights of the 2016 Conference
Conference highlights are expected to include: prominent invited speakers, current research symposia, case-based clinical sessions, and informative 3-hour clinical workshops focused on improving diagnosis and clinical care. Also we will have a one day patient conference with reduced registration fees that covers topics of interest to patients and their families.
 
Our 4 day international meeting will allow plenty of time for post-session Q and A as well as unique opportunities for informal meetings, networking, and new collaborations among our colleagues in a comfortable and well-designed conference environment. Our 2014 conference in San Francisco was the best attended and most successful in 15 years. By listening to your feedback from previous meetings, we plan to equal and even exceed that level of success in Ft. Lauderdale!

Attention: Early Stage Investigators
We will be applying for a National Institutes of Health (NIH) conference grant that, if funded, would cover conference costs for several early stage investigators who show promise as future CFS/ME or fatigue researchers. If you or one of your students or junior investigators would be interested in this possibility for the 2016 meeting, please contact me at: fred.friedberg@stonybrookmedicine.edu

Latest issue of IACFS/ME Journal
Apart from the conference, highlights from our July issue of the IACFS/ME journal, Fatigue: Biomedicine, Health, and Behavior Journal include the first empirical study (as far as we are aware) on Systemic Exertion Intolerance Disease (SEID; Jason et al; 2015), the new clinical case definition of CFS/ME recommended by the recent Institute of Medicine report. Also a new study of CFS and increased susceptibility to upper tract respiratory infections and illnesses (Smith and Thomas, 2015) is contained in this issue. To see the new issue, use your member login:

 http://www.tandfonline.com/toc/rftg20/current#.VdIHY_aFOM8 

For non-members, abstracts for the July issue may be found on the journal website:

 http://www.tandfonline.com/toc/rftg20/current#.VdIHY_aFOM8

CFS Advisory Committee (CFSAC) Meeting (8/18-8/19/15): New Hope for Research Funding?
The government-sponsored CFSAC meeting in Washington, DC has recommended housing CFS/ME research funding in two NIH agencies: National Institute of Neurological Disorders and Stroke and National Institute of Allergy and Infectious Disease. If adopted, this would be the first time a large US health agency with substantive funding takes ownership of the illness. This could result in new research initiatives and overall increases in the number of large biomedical research projects.

Also during the meeting, the Canadian criteria were recommended for research studies. However, validation questions could not be answered as no expert on case definition validation was in attendance. This is a critical issue that in my view resulted in a recommendation with questionable scientific foundation. But overall, the committee showed a sense of purpose and direction that we can only hope will lead to a much enlarged federal commitment to CFS/ME research.

Ros Vallings, Newsletter Editor, Stepping Down from the Board
On a sad note, Ros Vallings will be stepping down from our board of directors after 6 years of dedicated service to the organization. She has served as editor of our 3x a year newsletter which has regularly published on a diversity of topics including: current news and developments in research and practice, meeting and conference announcements, listings of professional activities, and book reviews. Ros has recently written the book, Managing ME/CFS: A Guide for Young People, reviewed in this issue of the newsletter. Ros also served on the IACFS/ME primer writing committee. We warmly thank Ros for her dedicated voluntary efforts to help promote and sustain the important publishing values of our organization. She will be missed.

Currently, we are looking for a new Newsletter editor. Please contact me (fred.friedberg@stonybrookmedicine.edu) if you would like more information.

With best regards,


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

PS. Please SAVE THE DATE for our next Conference in Fort. Lauderdale, FL, USA - October 27-30, 2016.


Message from Ros Vallings, Newsletter Editor

Dear All,

As I write this I am back in rather cold New Zealand but spring is fast approaching as we welcome new born lambs and see the daffodils blooming. As I watch my sheep, I think they do have a message for those with ME/CFS. They graze continually to keep up energy, spend some time licking their salt blocks and take exercise by gently wandering around, having a good stretch or snooze every so often. I have never seen or heard of a sheep with ME/CFS, so can only assume they have the formula for living just right!

As you will see below, my term of office as a board member has now expired after 6 years. So this will be my final newsletter. We are looking for someone who could take this over and invite anyone interested to contact us.

Since the last newsletter I have been to the Invest in ME conference in London. For me this was a 3-day event as I was invited to attend the 2-day colloquium prior to the main conference. The colloquium was attended by top international researchers and clinicians, providing an opportunity to present their work and brainstorm among themselves. Some young new researchers, including those new to looking at the illness attended, and inevitably new bonds are forged with opportunities for collaborative research. The main one day conference followed and as always this was a great event and very well attended, with plenty of international representation. There was a very long day of research presentations and discussion. (attachment 1) and Invest in ME must be thanked for their hard work and the inevitable fundraising to be able to continue this annual growing event. A trailer of the DVDs of the conference (available for purchase) is at:
http://www.investinme.eu/IIMEC11-news-0801.shtml
 
HISTORY
Soon after my return from London, I went off on holiday to Asia, and part of that trip involved a 3 day visit to the enormous city of Wuhan. My own grandfather had been among a group of people who helped continue establishment of the “Union Hospital” in Wuhan. This hospital was formed in the mid-1800s, and in the last 200 years has grown from a few small wooden buildings to the 8000 bed (34 storey) prestigious teaching hospital it is today. We were warmly welcomed and enjoyed the hospitality of the senior medical people, and were shown around many departments. They were very interested to hear more about ME/CFS and I provided them with booklets and information for their medical school library. Most of the CFS research done there has involved traditional Chinese medical approaches to management. But they do have joint clinics for pain, fatigue and sleep disorders. I will keep in touch and hope to foster more interest.

IACFS member Dr Rosemary Underhill gave a talk at the Royal Free Hospital Association meeting in November 2014. And a summary of this fascinating talk about the era of Royal Free Disease in London is attached (attachment 2)
 
 
BOARD ACTIVITIES
The board continues to work and advocate on your behalf. Co-Vice President Dr. Lily Chu has submitted the following:

SolveCFS Webinar on Post-exertional Malaise: -- On June 18th, I was invited by SolveCFS to give a 1-hr. webinar on post-exertional malaise, directed at patients. I covered the origins and evolution of PEM, how it is characterized by different case definitions, studies concerning PEM, and gaps/ opportunities for future research. From reviewing the literature, what stood out to me is how little research has been conducted on PEM, even though the symptom has been discussed for decades and the term was coined as part of the Fukuda case definition in 1994. Lack of, poor, and/or diverse definitions of PEM likely contribute to the neglect and confusion surrounding this symptom, especially by clinicians and researchers who do not specialize in ME/CFS. The talk can be accessed here:

https://www.youtube.com/watch?v=hxJPrkWHcBo

Other IACFS/ME members - Drs. Peter Rowe, Lucinda Bateman, and Alan Light – have also given talks this year for SolveCFS. Find them here:

https://www.youtube.com/user/SolveCFS

The board is now meeting regularly via Skype with discussions focusing particularly on the forthcoming IACFS/ME conference in November 2016 (see notice below). Opportunity to submit papers will be announced soon. It is hoped as always to attract people from around the world with a wide range of research and clinical presentations. The conference organisers are a group called FASEB, who have a very good reputation. The meeting sounds to have great potential for a coming-together of the whole ME/CFS International “family”.

Dr. Ros Vallings retiring from Board: The Board would like to thank Dr. Ros Vallings for her dedicated service over the last 6 years. Aside from helping to steer and run this organization, Ros was a co-author of the 2012 and 2014 “ME/CFS: A Primer for Clinical Practitioners”, regularly represented IACFS/ME at and reported back proceedings from international conferences, and, as main editor of our Newsletter, gathered news from around the world and scientific abstracts consistently for the benefit of our membership. Ros will continue to serve on the Board until September 2015.
  
 
PRIMER COMMITTEE
I am part of this authoring committee, which meets regularly to produce this much-needed Primer. As for the adult Primer, we are diligently working through the various aspects of well-researched paediatric patho-physiology, diagnosis and management. It takes many hours of commitment, and we are lucky to have such a dedicated team comprising some of the leading ME/CFS paediatricians.  
 
 
RESEARCH
Research continues in many prestigious institutions around the globe. We have abstracts of papers from 14 countries (attachment 3).

An unpublished paper from Canada has also been sent in by Ruth Miller from Vancouver on: Comparison of seven performance scales for differentiating individuals with ME/CFS from other patient groups, to be added to our newsletter. (attachment 4)

ME Research UK produces a weekly round-up of research papers, keeping us right up to the minute. See:

http://www.meresearch.org.uk/news/round-up-14-aug-2015/
  
 
JOURNAL
Fred Friedberg has continued to edit the journal “Fatigue: Biomedicine, Health & Behavior” which is published 4 times a year. The latest edition has recently been published. See:

http://www.tandfonline.com/toc/rftg20/current#.VIdf1ZVxnIU for a list of contents, and for a subscription, the journal can be downloaded on line.
 
 
WEBINARS ETC.
A series of webinars are now being produced by different ME/CFS organisations, and you can view these on the following links and you can subscribe to the e-mailing lists for future events

https://www.youtube.com/watch?v=3smCvgi3DlI&feature=youtu.be - on this site you have the opportunity to view previous webinars via youtube.

A recent webinar is by Michael Koolhaas, a Dutch patient and patient advocate, who dialogues with Prof. Frans Visser, who gave six webinars at an earlier stage of this project can be viewed at:

www.youtube.com/playlist?list=PLsQ0FZQ_5JXRPTXRzDZnFBNL0QJecBwAd His earlier webinars are available on the same site.

There is also a transcript of a Q&A session with Prof Alan Light (attachment 5)

And here is the link to the 101 page April edition of the ME Global Chronicle: http://let-me.be/request.php?19
 
 
CORRESPONDENCE
We have been contacted by the Ludwik Rydygier Collegium Medicum in Bydgoszcz, Nicolaus Copernicus University, in Poland. (attachment 6) regarding joining the IACFS/ME
 
 
NEWS
Suzanne D. Vernon Partners with Lucinda Bateman at Bateman Horne Center
Eight years after joining the Solve ME/CFS Initiative (SMCI), Suzanne D. Vernon, PhD, stepped down as Scientific Director in late June. Suzanne has now partnered with Dr. Lucinda Bateman at the Bateman Horne Center. This partnership combines over 40 years of clinical and research experience dedicated to solving ME/CFS.

New Scientific Director at Solve ME/CFS
Solve ME/CFS has appointed Zaher Nahle, PhD, MPA as Vice President for Research and Scientific Programs. As the organization’s new Scientific Director, Dr. Nahle will oversee the research program.
 
 
OBITUARY
We are sad to announce the death of Leslie Simpson in Dunedin, New Zealand, aged 91. Les was one of the early pioneers looking at this illness at Otago University, and his work focused on red blood cell shape. Although his research was never proven or published in any journals, he created an awareness of ME/CFS long before the widespread recognition we see today. This supported many of those patients who at that time were undiagnosed and very much alone. He continued working until his death.


GRANTS AND AWARDS

A useful website to help with applying for funding through the UK Medical Research council is at: http://www.mrc.ac.uk/funding/how-we-fund-research/highlight-notices/cfsme-highight-notice/


NEXT NEWSLETTER:  CALL FOR SUBMISSIONS

We plan for our next newsletter to be out in December. If you have an event, news item, or opinion/ perspective you would like to share with our members, please consider submitting it for the next newsletter. As an international organization, we are especially interested in hearing from clinicians, researchers, and patients/ advocates abroad about the situation for FM, ME/CFS, or related illnesses in your country or region. Send your submissions by 15 November 2015.


WANT TO HELP SUPPORT IACFS/ME AND INTRODUCE YOUR PRODUCT/ SERVICE/ OR ORGANIZATION TO OUR MEMBERS?
Consider sponsoring our 3x/ year newsletter. We will include the name of your company or organization in our newsletter which goes out to hundreds of clinicians, researchers, patients, and other professionals internationally. Note that sponsorship does not constitute an endorsement of your product, service, company, or organization though. For more information, contact: lilyxchu@gmail.com.

 

CONFERENCES, MEETINGS ETC.
CFS/ME Tagund in Dortmund, Germany.
26.9.2015

Hotel Best Western, Westfalendamm 270, Dortmund. See website for the one day programme and details of attendance: http://www.fatigatio.de/cfs-me-fachtagung-2015/

Registration for researchers is now open for the UK ME/CFS Research Collaborative (CMRC) Annual Science Conference on Tuesday 13 October and Wednesday 14 October 2015. Associate members of the CMRC, including people with ME, are able to register from 1 May 2015. To facilitate travel for speakers and visitors, the venue is the 3-star Novotel at Newcastle Airport. Further details of the outline programme and the costs can be found at the...
http://www.meresearch.org.uk/news/cmrc-researchers-registration/

Invest in ME: The charity now announces provisional dates for the 2016 conference and research colloquium. http://www.investinme.eu/index.shtml#agenda
The BRMEC6 research colloquium will be held on 1st and 2nd June 2016.
The IIMEC11 conference will be held on 3rd June 2016.

Save the Date!
16th International Research and Clinical Conference

The Westin Fort Lauderdale Beach Resort
Fort Lauderdale, Florida, USA – October 27 – 30, 2016

Fort Lauderdale, FL

Mark your calendars to join us next October 27-30, 2016 for our 16th International Research and Clinical Conference to be held in Fort Lauderdale, Florida, USA at the Westin Fort Lauderdale Beach Resort. We anticipate an exciting, 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 poster sessions, oral presentations, networking events, and a gala reception and dinner on Saturday. The Institute for Neuro Immune Medicine at Nova Southeastern University, based in Fort Lauderdale, will also be hosting a special pre-conference day of talks on October 26.

Our conferences are attended by hundreds of scientists, physicians, other professionals, and patients interested in chronic fatigue syndrome/ myalgic encephalomyelitis, fibromyalgia, and co-morbid illnesses (e.g. orthostatic intolerance, insomnia, irritable bowel syndrome, hypothyrodisim) as well as other medical conditions/ circumstances (e.g. cancer, multiple sclerosis, rheumatologic diseases, aging, overwork) associated with acute or chronic fatigue. Attendees come from all over the United States and over 25 countries. For a taste of our meetings, check out our 2014 Program Agenda:

http://iacfsme.org/Conferences/2014-San-Francisco/Agenda/Professional-Agenda.aspx  [Professionals]

http://iacfsme.org/Conferences/2014-San-Francisco/Agenda/Patient-Agenda.aspx  [Patients]

Watch for more information about the meeting -- including how to register for it, when/ where to submit abstracts, and sponsorship opportunities -- over the next few months! See (attachment 7) for information about Fort Lauderdale.

If you have any items of interest for future newsletters or correspondence, notice of meetings etc., please send them to:
And if any of you are interested in being involved with sub-committees or helping the board in conference preparation, please contact us.

Very best wishes,
 
Ros
Ros Vallings

BOOK REVIEW by Sarah Thornton

Fort Lauderdale, FLMANAGING ME/CFS
A Guide for Young People
Dr Rosamund Vallings, MNZM, MB BS
Published by Calico Publishing; August 2015; RRP: $29.99 NZ

Dr Rosamund Vallings has produced a wonderfully crafted second book on the well-recognised debilitating illness, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), this time written specifically for teenagers, who are a significant subgroup of ME/CFS patients. Every young ME/CFS sufferer will benefit from having this book — it is supportive, provides hope for a better future, but still retains a realistic integrity in providing advice for how the most debilitating symptoms can be mitigated.
Professor Warren Tate, FRSNZ CNZM, University of Otago, New Zealand

Teenagers are particularly prone to ME/CFS (Chronic Fatigue Syndrome) and Dr Rosamund Vallings has written her book specifically for them. Vallings is a leading world specialist in ME/CFS and has been helping those with this condition for more than 40 years. She writes with great empathy and explains this complicated and at times baffling illness in an accessible way.

Managing ME/CFS is full of practical advice and suggestions for managing your health and everyday tasks, working through the roller coaster ride that defines the condition and optimizing recovery. The book includes inspiring stories from young people with this illness and contains many useful suggestions and ideas, as well as a list of ME/CFS websites. It also deals with the wider social implications of having ME/CFS, such as keeping up with your education, having fun and a social life, and managing holidays and travel.

The Foreword to Managing ME/CFS: A Guide for Young People has been written by Rugby League legend, Richie Barnett (himself a ME/CFS sufferer). He says, “This book is brilliant . . . a must-read for the many young kids who suffer from this illness.”

Vallings’ message to young people is to learn as much as you can about ME/CFS and to actively take charge of your health. As she says, “Only you know how you really feel.” Vallings readily shares her expertise and insights, all of which will be invaluable and support those with ME/CFS and their caregivers.

“What a splendid idea to write a book for young people with ME/CFS! Dr. Ros Vallings has given us all an excellent resource to share with our young patients, one that is clear and optimistic with very useful advice and encouragement.” – Nancy Klimas, MD, Director, Institute for Neuro-Immune Medicine, Nova Southeastern University, Professor Emerita, University of Miami School of Medicine, USA

Dr Rosamund Vallings practices medicine in Auckland and has helped thousands of people around the world with her previous book Chronic Fatigue Syndrome/ME: Symptoms, Diagnosis, Management (Calico, 2013). She was awarded the Membership of the New Zealand Order of Merit for Services to Chronic Fatigue Syndrome in 2008.

www.calicopublishing.co.nz

Kindle edition: http://www.amazon.com/Managing-ME-CFS-guide-people-ebook/dp/B0118NVEBG

 

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.

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