Welcome Message from Ros Vallings, newsletter editor
Ampligen (rintatotolimod) - the ongoing saga
Forthcoming Events and Conferences
IACFS/ME President’s Letter
Dear Members and Colleagues,
Greetings! In the New Year, we have a lot on our plate—and it is mostly good stuff! First of all, our new journal, Fatigue: Biomedicine, Health and Behavior has been launched with our inaugural double issue (http://www.tandfonline.com/toc/rftg20/current). This first issue has received over 3500 views with Lenny Jason’s review article on envelope theory in the top 30 viewed articles among 1600+ journals published by Taylor and Francis. We are also encouraged by new submissions that range from a review of fatigue scales to fatigue in MS to a new DNA sequencing technique applicable to CFS/ME.
In response to the new journal, I recently spoke with a thoughtful exercise physiology scientist in New Zealand who focuses on fatigue and exercise in healthy people. The exchange of ideas during this brief phone call generated some interesting possibilities about improving exercise tolerance in CFS/ME. I was surprised and a bit excited by this 30 min. conversation—particularly because exercise effects in CFS/ME and healthy people appear to be so different and irreconcilable. To me, this is another indication that progress in our relatively small and insular field may be hindered in part by the absence of interactions with others in related fields. I firmly believe that opening up new inter-professional discussions will stimulate creative thinking and potentially innovative research to advance the knowledge base and our ability to help under-served patients.
Our expanded focus on fatigue in other fields will also be reflected in the program for our next biennial international research and clinical conference to be held in San Francisco, March 20-23, 2014 at the Parc 55 Wyndham Hotel (www.iacfsme.org). (The meeting is co-sponsored by Stanford University.) While the agenda will continue to emphasize CFS/ME, we are also inviting submissions that encompass fatigue in diseases including cancer, autoimmune diseases, multiple sclerosis, pain conditions, mood disorders, and circulatory diseases. In addition, studies on fatigue in sleep, aging, exercise and sport, and occupations will be welcomed. Interactive panel discussions will be scheduled to capitalize on the diversity of subjects presented.
We are also applying for conference funding to bring in early stage investigators, including postdoctoral fellows and graduate and medical students with an interest in CFS/ME. As our field remains small, it is essential to encourage and develop positive relationships with new investigators and future clinicians so that they may seriously consider a career in CFS/ME. As such, we anticipate new conference topics such as mentoring/career development and clinical fatigue education in medical schools.
Apart from the conference, we are happy to accept an offer from Dr. Nancy Lee to serve in the position of non-voting liaison representative to the (US) CFS Advisory Committee (CFSAC) which will be meeting May 22-23 in Washington, DC. We thank a generous donor (who requested anonymity) for funding our expenses to attend the meeting. We also thank Tony Komaroff, Lenny Jason, and a group of 10 prominent advocates led by Joan Grobstein who wrote recommendation letters for us. Finally, we wish to recognize all those involved with the CFSAC who advised that such a position be created. This new form of representation on the committee will help to ensure that input from CFS/ME organizations is heard and considered in their deliberations and recommendations.
With best regards,
Fred Friedberg, PhD
Message from Ros Vallings, newsletter editor
Welcome to the April 2013 edition of the IACFS/ME newsletter.
As I write this it is Easter and here in New Zealand we are at the end of a long hot summer and drought conditions. I find that some with CFS seem to thrive in the hot, dry weather, while other prefer and do well in the cold seasons. It re-affirms the complexity of this illness.
As usual I will begin by thinking back a little about the past. Here we have a memorial day coming up called Anzac day on 25th April. This is a day of remembrance for all those Australians and New Zealanders who fell at the Battle of Gallipoli in 1915. In any fighting war campaign, veterans will return, and many will bear the scars of battle, and many may remain sick for decades. In more modern times, we have all heard about Gulf War Illness – but is this really anything new? Battle results in wounds, infections, fatigue, effects of chemicals and PSTD. Inevitably some of those affected will progress to a chronic illness – diagnosable as CFS (or GWI). I think the research into GWI has made us all aware of this as a likely subgroup of CFS, but we should not forget the many veterans of past campaigns who have probably suffered this debilitating and complex illness, and who were never formally diagnosed or treated appropriately.
This has been a very busy time for your board. Plans are well afoot for the up and coming conference in San Francisco next March. The conference organising committee and fund-raising committee have been hard at work settling on a venue, planning speakers and a programme, and looking at innovative ideas for fundraising. This promises to be a very exciting event. We would welcome your ideas. We are fortunate that Lily Chu has contacts in the area, and she has worked hard at coordinating the whole project. Details of the conference are on our website, and this will be updated as everything is confirmed.
Fred Friedberg is to be congratulated on the success of our new Journal. We are always looking for high quality papers for review. Widening the interests to cover more aspects of fatigue is proving worthwhile. The following was received from Fred recently: “Fatigue has now exceeded 3,500 full text downloads inside 3 months of being online which we feel is tremendously encouraging. Leonard A. Jason (et al.)’s paper on Energy conversation/envelope theory interventions has received over 1,200 full text downloads, making it the 30th most downloaded article across all Taylor & Francis journals (1600+) to date in 2013 which I am sure you will agree is an incredible response.”
Fred has also received the good news that the IACFS/ME has been approved as a non-voting member of the CFS Advisory Committee (CFSAC) for 2 years. Their spring meeting is on May 22-23 (see events below). Many thanks to those who supported the application, including Dr. Tony Komaroff and patient advocates.
Some board members will also attend the FDA meeting on 25th April (see below) when drug management of CFS will be discussed. Lily Chu is initiating a survey for patients, which she will present at this event.
Some members of the Practitioners’ Primer committee are already working on an update. The Primer has been very well received internationally, and is being distributed widely to clinicians, with very positive response. I have personally had some extremely complimentary comments from GPs here in NZ – we distributed a copy to every GP in the country – and so many are relieved to finally have some sensible management guidelines.
Leonard Jason (recently retired board member) has initiated a blog for Oxford University Press. It makes for interesting reading (attachment 1) and we all need to think of these many different ways we can promote our our thoughts and spread useful information.
We are sorry to lose board member Nereida Littrell due to family commitments, and wish her well. Nereida has done a wonderful job of translating the Primer into Spanish.
In March the NIH awarded nearly $2 Million to 3 NYC Institutions for Chronic Fatigue Syndrome Research (attachment 2).
Ampligen (rintatotolimod) - the ongoing saga
There has been much press about the rejection of this drug by the FDA. (see website: http://www.nasdaq.com/article/hemispherx-biopharma-receives-complete-response-letter-from-fda-on-ampligenr-new-drug-application-20130204-01326.) And some of the press reports can be viewed (attachment 3).
I am attaching a list of 82 research abstracts published in the past 4 months (attachment 4). There are papers from 20 different countries. Over the past year, there have been papers from altogether 32 different countries, so this illness is truly global. There are also 3 interesting discussion papers from Medscape Medical News (attachment 5).
Professor Julia Newton has sent us 2 useful reviews. One on “Poor Quality Sleep” and a second review of a paper on “Reduced cardiac vagal modulation impacts on cognitive performance in Chronic Fatigue Syndrome” (attachment 6).
Dr Kenny de Meirleir recently spoke at the WPI and attached is a brief summary of his talk (attachment 7).
The Open Medicine Institute headed by Dr Andreas Kojelnik has a list of their current and planned research (attachment 8) and more detail is available on their website: http://openmedicineinstitute.org/research-initiatives/mecfs-merit/.
Several people have expressed a desire to be able to read papers published in back issues of the Journal of Chronic Fatigue Syndrome, which was published from 1995-2007. Details to download these articles are available (attachment 9).
A comment and letter from Dr Charles Shepherd on the PACE trial in Britain has been sent for publication and is available on the ME Association (UK) website Another letter was sent by Professor Martin Pall in response to a paper published by Simon Wessely (attachment 10 for both these responses). And the UK House of Lords will be debating this. One of its members, the Countess of Mar, has personal experience with ME and has continually questioned the results of PACE. We would welcome comments from members on these and other items of interest.
Very best wishes to all
Rosamund Vallings, MB BS
Forthcoming Events and Conferences
25-26 April FDA - Drug Development for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME and CFS) in Bethesda, Maryland.
The 2013 Spring Meeting of the CFSAC will be held on May 22 – 23, 2013 in the Hubert H. Humphrey Building, 200 Independence Ave. SW, Room 800, Washington, DC.http://www.hhs.gov/advcomcfs/
Dutch ME Conference on May 8, 2013http://forums.phoenixrising.me/index.php?threads/dutch-me-conference-on-may-8-2013.22054/
Invest in ME Conference – London – 31st May 2013
British Association for ME – 2-3rd October, 2013 – Milton Keynes
The IACFS/ME announces the 11th Biennial International Research and Clinical Conference to be held in San Francisco, California, USA, March 20-23, 2014. The conference is co-sponsored by Stanford University and will be held at the Parc 55 Wyndham Hotel. http://www.iacfsme.org/
Please let us know about any forthcoming meetings in your area.