Volume 7, Issue 2 • December 2014

December 1, 2014
 IACFS/ME Newsletter
Volume 7, Issue 2 • December 2014

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



IACFS/ME President’s Letter

Dear Members,

First of all, I’d like to extend my best wishes to everyone for the holiday season.

Conference: We have tentatively scheduled our next international research and clinical conference for March, 10-13, 2016 in Hollywood, Florida. This is an attractive beach front community on the ocean with an old-fashioned boardwalk and shops -- and only 15 minutes from the Ft. Lauderdale International airport! Average daytime high temperature in March: 78 degrees with moderate breezes. Especially appealing to us northerners where it will still be winter time! More information to follow as we finalize the arrangements.

Our esteemed colleagues Nancy Klimas and Mary Ann Fletcher have generously offered to help with the local arrangements for the meeting. We do need volunteers to staff the conference, and we need help to publicize the meeting locally, nationally, and internationally, to professionals and interested patients. Also, we’re looking for volunteer(s) to put together a list of the email addresses of authors of fatigue articles listed in PubMed in 2014. These authors (in addition to our regular mailing list) will be sent periodic conference announcements so they will be well-aware that they are welcomed to submit abstracts and attend the meeting.  

If you can offer assistance to our efforts to promote and/or fund the conference, that would be greatly appreciated. Please contact me directly ([email protected]).

P2P:   I attended the federally sponsored Pathways to Prevention (P2P) meeting in Bethesda, Maryland, the initiative that is focused on summarizing research on diagnosis and treatment in CFS/ME and in identifying research gaps. Despite considerable controversy, I thought it was a useful and productive meeting that did identify areas for future research. The key issue is the ability of US National Institutes of Health to fund a new dedicated grants program based on the specific research directions that were recommended. As you may know, US research funding of CFS/ME is very minimal, given the high number of patients and the disabling effects of the illness. 

Treasurer:  Our treasurer, Dennis Mangan, has stepped down due to his increased professional as well as family issues. We thank him for his service.

Journal update:  Our new peer-review journal, Fatigue: Biomedicine, Health, and Behavior, is coming up to its second anniversary. We are very pleased that the new journal continues to get the scientific submissions needed to fill up our quarterly issues. I’ve been told by several authors that there still is resistance by journal editors to publish CFS/ME papers in mainstream medical journals. By contrast, we welcome CFS/ME submissions. We expect to hear from the National Library of Medicine regarding our application for Medline indexing sometime in 2015. Medline acceptance would greatly increase our visibility and credibility in the research and clinical communities.

Happy holidays!

Best regards,

Fred Friedberg, PhD


Message from Ros Vallings, newsletter editor

Dear All,
As the Christmas season approaches, weather is getting hotter here in New Zealand, while no doubt those of you in Northern climes are beginning to shiver, with snow and ice and shorter hours of daylight.

This brings to mind the first recorded epidemic of an ME/CFS-type illness occurred in 1948 in Akureyri, Iceland. (A very cold place with short hours of daylight in a long winter). There are still sick people around who succumbed to the illness at the time 66 years ago. In 1956, Melvin Ramsay first defined ME in an editorial entitled, “A New Clinical Entity?” published in the Lancet, following the Royal Free outbreak. The article discussed several prior epidemic outbreaks. And now this year it is 30 years since the first documented clusters of CFS-like cases in the U.S. occurred in Lake Tahoe, NV and Lyndonville, NY, as described by Drs Dan Peterson and David Bell respectively.
So much has happened since then, and the latest exciting brain research coming out of Stanford University adds further weight to our understanding of this very complex and serious illness. See: https://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html

The board keeps busy, meeting approximately every 6 weeks via Skype. We have spent considerable time researching possible options for the next IACFS/ME conference and have settled on Florida as a venue in March 2015. Once details become settled you will receive notifications. Maybe you can start already thinking about this as a holiday option to add on at a perfect time of year.
We have also continued to work on the constitution with legal help to keep everything as correct as possible, so that we can feel comfortable that we are staying within our boundaries. Dennis Mangan has worked particularly hard at this. We are hoping to engage with new board members who were nominated at the last conference and get them involved in their particular areas of expertise. This is important as several current board members’ term of office will expire in 2015.
Meetings of CFSAC and P2P are being held this month and some board members will be involved.
Julia Newton who joined the board this year has written a piece about herself and activities (attachment 1). And our other new board member Sonya Marshall-Gradisnik will do the same for our next newsletter.

The primer committee continues to review the primer with a view to updates. This is particularly important as new research findings come to light. We are looking at methods for wider distribution of the Primer, as it has proved a valuable resource with much positive comment from physicians and other health practitioners.
The committee convened to produce a Paediatric Primer has been meeting regularly via Skype. This committee includes top paediatricians and CFS/ME researchers from around the globe. It is a big undertaking and needs to be carefully researched as for the adult Primer. Dr Katherine Rowe from Melbourne visited New Zealand last month, and her visit highlighted the need for information for paediatricians. Her meetings throughout the country were enthusiastically attended by clinicians in other disciplines too.

Research continues in many prestigious institutions around the globe.
Abstracts of publications from 10 countries are attached (attachment 2). Over the last 5 years we have had papers from 45 countries.
A very good overview about the latest thinking on Fibromyalgia has been produced by Daniel Clauw (attachment 3).
A DVD is now available from the Invest in ME conference held in London last May. http://www.investinme.eu/IIMEC9.shtml#dvd. This provides an excellent overview of the research presented.

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 online.

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.
You can also view a number of research updates on the websites of various International ME organization on the attached list (attachment 4). And the October edition of the ME Global Chronicle is attached (attachment 5).

It is great sadness we have to report the sudden death of Arlene Vermaak who died on August 28, 2014. Arlene was the stalwart of the South African ME Society, running it virtually single handed from small beginnings 10 years ago. She produced a regular and very good magazine. Arlene liaised regularly with groups in the UK, USA, Australia and New Zealand. Despite suffering from ME, she devoted herself almost full time to the ME cause. She will be sadly missed by many, and our thoughts go out to her husband Peter and family.

Providing increased services for Chronic Fatigue Syndrome sufferers will be the focus of Griffith research following the award of a $1.85m grant to one of Australia’s foremost authorities on the condition. Professor Sonya Marshall-Gradisnik from the National Centre For Neuroimmunology and Emerging Diseases (NCNED) at Griffith University was awarded the research grant from the Stafford Fox Medical Research Foundation as part of her team’s bid to accelerate the diagnosis and implementation of appropriate treatment. See: https://app.griffith.edu.au/news/2014/10/13/large-grant-awarded-to-griffith-cfs-researcher/.
History may change a little in the years ahead as I have now read about Post-Ebola Syndrome, which persists after the virus has been cured – maybe yet another sub-category of CFS/ME (attachment 6).
Board member Lily Chu has posted the following:
"The IACFS/ME Board wishes everyone a peaceful and healthy holiday season. We are grateful for your continuing support of and participation in our organization. Without you, our 2014 San Francisco Conference would not have been successful nor our other endeavors.
Please consider making a donation to IACFS/ME this holiday season so that we may continue to educate professionals, promote ME/CFS research, and advocate for science-backed healthcare/ government policies. Donations can be made via check or credit card online; if you are not sure which option to choose, pick "General Fund":
For our US supporters, donations need to be made before December 31, 2013 to qualify for tax deductions for the 2014 tax filing; for more information, contact your tax advisor."
If you have any items of interest for future newsletters or correspondence, notice of meetings etc., please send them to me at: [email protected] .
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 Vallings


29th May 2015 - IIMEC10
Welcome to London for the IIMEC10 International ME Conference for 2015.
Invest in ME is a UK charity facilitating and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS) and promoting better education about ME. http://www.investinme.eu/ for details and enrollment

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Tuesday, 5 May 2015 - 1:00pm
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: “Not Just Tired All The Time!”
Barnard’s Inn Hall, Gresham College, London
ME/CFS is a complex, long-term, chronic illness affecting an estimated 250,000 people in the UK. This lecture will provide a general account of the history, epidemiology, suggested cause, disease mechanisms and current treatment approaches for ME/CFS. A follow-up lecture, 'Standing up for fatigue' will provide an overview of research developments into fatigue, a common and disabling symptom of ME/CFS.
You do not need to register for this free public event. It will be run on a "first come, first served" basis, so please feel free to arrive a little early to ensure that you can get a seat. Doors will be opened half an hour before the start of the event.
Speaker: Dr Alastair Miller
Consultant Physician in the Tropical & Infectious Disease Unit at the Royal Liverpool University Hospital

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TUESDAY, December 16 , 2014
Solve ME/CFS Initiative 2014 Webinar Series
2014 ME/CFS Research Review
2 - 3:00 PM Eastern (1pm Central/Noon Mountain/11am Pacific)
Solve ME/CFS Initiative leadership, Carol Head and Suzanne D Vernon, PhD, will offer a summary of the progress and promise that has been shown through our research efforts. The SMCI Research Institute Without Walls has allowed us to fund some of the best and brightest researchers, from leading institutions, without the cost of a bricks and mortar institute. SMCI fosters an innovative and collaborative environment and in this year-end review you’ll learn some of the tangible results of this work.

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2nd and 3rd September 2015 –
The MRC panel of experts ultimately transformed into the UK CFS/ME Research Collaborative which is now chaired by Professor Stephen Holgate, a respiratory physician from Southampton. Professor Holgate has championed the cause of CFS/ME from his days as chair of one of the panels of the Medical Research Council and has pulled together this group of clinicians, researchers and representatives from the patient community into a cohesive and effective group. The UK CFS/ME Research Collaborative has members from some of the biggest funding bodies in the UK and has recently hosted its second annual conference in Bristol, UK; I am delighted to say that the third annual conference will be held in Newcastle on the 2nd and 3rd September 2015 – so do please put that date in your diary.

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8-12TH May 2015
AAI Annual Meeting
Ernest N. Morial Convention Center, New Orleans, Louisiana
900 Convention Center Blvd., New Orleans, LA


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26-30 May 2015 
ACSM's 62nd Annual Meeting, 6th World Congress on Exercise is Medicine® and World Congress on the Basic Science of Exercise Fatigue 

San Diego, California