Volume 6, Issue 4 • April 2014

April 1, 2014

IACFS/ME Newsletter

Volume 6, Issue 4 • April 2014

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


Message from Ros Vallings, newsletter editor


Dear All,
As you will all be aware we have just enjoyed a most successful conference in San Francisco. 400 researchers, clinicians, patients and supporters came from far and wide and 16 countries were represented. It was exciting to have presentations from mainland China for the first time. The conference was spread over 4 days, and many participants also attended a one day pre-symposium at Stanford University. For an overview of the main conference see: (attachment 1), and the Stanford symposium (attachment 2). There were also a number of well attended workshops, and we were delighted by the quality of speakers and feedback from participants. The book of abstracts will be available to purchase and this will include abstracts from all the poster presentations as well.
ME Research UK was represented at our conference by Stewart Walker, and Neil Abbott has brought us up to date with news from Scotland (attachment 3).
At the board meeting, all current members of the board were re-elected, and new members welcomed were Prof Sonya Marshall-Gradisnik from Gold Coast, Australia and Prof Julia Newton from Newcastle, UK. We shall value their input, as we continue now to feel more “international”. Fred Friedberg will remain as president until his current term of office expires. New board nominees include John Kaiser, Mary Ann Fletcher, and Steven Krafchick. There was considerable interest from a number of members in participating in sub-committees, and Dr Lily Chu has drawn up a list of possible sub-committees (attachment 4).
At the conference there were several enthusiastic meetings leading to the formation of special interest groups. Dennis Mangan headed a group meeting regarding “Communication” and his report is attached (attachment 5). Other groups are in the pipeline being formed. There was certainly enthusiasm among the clinicians to have ongoing contact and promote medical education, and this group will be headed by Dr Susan Levine (attachment 5a). Chris Snell is heading a group looking at “Cardio-pulmonary exercise testing and disability assessment” (attachment 5b).
There has been discussion already regarding the possible venue for the next conference, 2 years hence, and suggestions are welcome. Various American venues have been suggested as well as Europe. We would need a good, supportive infrastructure and financial sponsorship. Please let us know of likely contacts.


As always I like to include a snippet of history, and already some of us more aging members are becoming part of that history! I enjoyed meeting with Dr Rosemary Underhill, and we were able to reminisce about the time we were medical students in London around the time of the Royal Free Disease Epidemic (1950s). Rosemary was at the Royal Free Hospital – at the very the centre of this, and I was at the London Hospital just down the road. We can both remember seeing and looking after patients with this illness, which of course many years later became to be known as ME/CFS. At the time there was never any question that this was not a real serious physical illness, and many of the patients were doctors and nurses who had been struck down by a very serious bout of flu, and did not recover. Many probably succumbed to ME/CFS as they had battled on so hard looking after the patients despite their own illness. I can remember the very severely ill patients often being in hospital for many months, being widely investigated for their many bizarre symptoms. Treatment was as now, mainly supportive with lifestyle advice. No-one then would have believed the advances in immunology, brain studies, muscle chemistry etc that we heard about in San Francisco. We have come a long way in unravelling the mysteries.


Board Activities

In the lead up to the conference your board was extremely busy organizing and fine-tuning the event. In particular thanks must go to Lily Chu for her local expertise and involvement. She worked really hard, and was also a great liaison person for the Stanford symposium. Now is a time for consolidation and future planning. The organization is growing, and we need your input. Please let us know what you would like to see for the future. An effort is being launched in the US to convince the National Institutes of Health (NIH) to release $7-$10 million for ME/CFS research (attachment 6). Congressional representatives are calling for a request for applications (RFA). The IACFS/ME board has written to Dr Collins, the NIH director (attachment 7). It would indeed be good if the IACFS/ME membership could do the same - members could contact the NIH via letters/emails/phone calls, requesting an RFA of $7M.

Primer Committee
The new edition of the Clinicians’ Primer was launched at the conference. There was considerable discussion at the authorship panel presentation. Sterling work had been done on this latest edition by Drs Alan Gurwitt, Rosemary Underhill and Ken Friedman. It is hoped to update and produce a new edition every 2 years, and already new research and ideas are to be considered. In particular it was felt that there should be more emphasis and inclusion on details relating to mortality. The Primer Committee will continue to meet via Skype to discuss these issues. A long-awaited pediatric primer is now planned and a committee of experts has been assembled and has already started work on this.

Lenny Jason’s research group at DePaul University is seeking help to undertake a study of mortality and ME/CFS. I would encourage you to read about this and participate if you have information (attachment 8).
In addition to all the wonderful presentations and posters at the conference, there has been considerable research around the world being published in many prestigious journals. Abstracts of publications from 19 countries during the past 4 months are attached (attachment 9). There are this time articles from Switzerland, Tahiti and Argentina. Over the past 5 years we have included abstracts now from 43 countries.
And I am attaching 3 press reports on new research into Fibromyalgia for your interest (attachment 9a).


Fred Friedberg has continued with his editorship of our own quarterly journal: Fatigue: Biomedicine, Health and Behavior. It is hoped to attain Medline listing in the near future. Fred is well supported by an outstanding editorial team. We welcome your submissions for review and possible inclusion.


Lenny Jason has received an NIH grant to study the epidemiology of pediatric CFS (20,000 children between ages 5-17)
Prevalence of Chronic Fatigue Syndrome in Youth is the focus of this Chicago based study.
We congratulate all our worthy winners of the following awards which were made at the San Francisco conference acknowledging excellence:
Gov Rudy Perpich award: Prof Nancy Klimas
Outstanding Clinician award: Dr Katherine Rowe
Outstanding Researcher award: Dr Peter Rowe
Junior Investigator award: Madison Sunnquist
Special Service award: Richard and Pia Simpson
Best poster: Matthew Sorenson
If you have snippets of news, correspondence, notice of meetings or items of interest for the newsletter, please send to me at: [email protected]
Very best wishes,
Ros Vallings


Diagnostic Criteria for ME/CFS - Committee Meeting 3 – see how you can participate (attachment 10)
When: 5.May 2014 (0800 EST)
Topics: Diseases,Select populations and Health Disparities
Activity: Diagnostic criteria for ME/CFS

Invest in ME
9th International Invest in ME conference 2014 – 30th May 2014 – Westminster, London
Synergising Research into ME
http://www.investinme.eu/agenda.html for agenda and registration.

Irish ME Association - ME/CFS Awareness Month Activities (May 2014)
We are pleased to announce that a leading UK ME Expert, Dr Charles Shepherd, will give three talks on ME during ME Awareness Month. The talks are entitled 'ME/CFS - where are we now with research, diagnosis and management?', and will take place in the following venues:
Limerick - Friday May 9 - 12 PM (noon)
Limerick Strand Hotel, Ennis Road, Limerick City http://www.strandhotellimerick.ie/
Galway - Saturday May 10 - 2 PM
Connacht Hotel (formerly Carlton Hotel), Renmore, Galway City http://www.theconnacht.ie/
Dublin - Sunday May 11 - 3 PM
Carlton Hotel Dublin Airport, Old Airport Rd, Cloghran (Santry), Dublin Airport. http://www.carltondublinairport.com/
Admission: €5 (on the door). Dr. Shepherd will be fresh from the major conference in the field, held this year in San Francisco, and will share information from that. Following each talk, there will be a Q&A session. If you want further information, please contact us. http://www.irishmecfs.org/events.html