Welcome Message from Ros Vallings, newsletter editor
Forthcoming CFS Events
IACFS/ME President’s Letter
The recent publication of new criteria for ME (Carruthers et al., 2011) has generated a number of initial reactions ranging from enthusiasm to concern. The new criteria designate ME as the appropriate biological name for the illness and put aside the CFS label as confusing and over-focused on the symptom of fatigue.
The 2003 Canadian Consensus Criteria were used as a starting point, but significant changes were made. Rather than pathological fatigue, the cardinal symptom of the new definition of ME is post-exertional malaise now termed: post-exertional neuroimmune exhaustion. Also the six-month waiting period before diagnosis is no longer required.
The biological focus in the article for the new ME is clear, consistent, and unequivocal. The ultimate value of the new definition will be determined by our researchers and clinicians. There are no ready answers about the impact of the re-defined ME on important issues such as illness credibility, physician willingness to diagnose and treat ME, and disability determinations.
The lead author of the new criteria, Dr. Bruce Carruthers, will be a featured speaker at the IACFS/ME Research and Clinical Conference in Ottawa, Sept. 22-25, 2011 (www.iacfsme.org). He will share the podium with prominent CFS/ME researchers Dr. Leonard Jason and Dr. Elizabeth Unger in a 90-minute case definitions symposium that will allow plenty of time for Q and A about the new criteria. I expect this to be a lively session.
I think that discussion, debate, and research are now in order regarding this newly defined ME.
I hope to see you in Ottawa!
With best regards,
Fred Friedberg, PhD
Message from Ros Vallings, newsletter editor
Welcome to the August edition of the IACFS/ME newsletter.
The months are passing quickly and it is only a short time now to our biennial conference in the beautiful city of Ottawa (details below). We look forward to welcoming you all there for what promises to be a very exciting programme. If you have not yet registered, you are advised to do so as soon as possible to ensure your attendance and accommodation.
The past few months have been a busy time in the CFS/ME world with ongoing publicity regarding XMRV, with further studies, and also the draft production of the new International consensus diagnostic criteria (see attachment 1). We look forward to debate on these matters at the conference.
A wonderful resume of the history of CFS/ME from 1956 to 1993 has been composed by Margaret Williams for Invest in ME. It is entitled “Grey information about ME/CFS” and provides an excellent read. She is planning to continue this article. (http://www.investinme.org/Article422-2%20Grey%20Information%20about%20ME%20CFS%20Part%20II.htm). I commend it to you all, and it is exciting to see how far we have come in 55 years.
I was fortunate to be able to attend the 6th Invest in ME International ME/CFS Conference 2011 in May in London. The theme was: The Need for Guidelines, Clinical Trials and Treatments for ME/CFS. This proved to be an exciting and stimulating event, with extra opportunity for researchers to have an afternoon think tank together for ongoing collaboration (see attachment 2 for conference report). Several of us were also invited to attend a delegation to parliament to allow discussion with MPs about the illness and its implications.
The 15th International Conference on Human Retrovirology, HTLV and Related Viruses was held on June 4-8, 2011 in Leuven, Belgium (for abstracts see: http://www.retrovirology.com/supplements/8/S1). There were a number of presentations relating to XMRV.
The National Institutes of Health (NIH) convened a State of the Knowledge Workshop on ME/CFS Research on April 7-8, 2011. The podcast is archived for you to view at http://videocast.nih.gov/PastEvents.asp?c=0&s=161.
The board have had many teleconference meetings since our last newsletter. These have been particularly focused on the planning of the forthcoming conference, and ongoing work to produce a CFS/ME Primer for clinicians. For the conference we had many high quality abstracts to review for presentations as well as the inevitable groundwork with our experienced team of conference organisers. The Primer is near completion and ready to go to external reviewers. We hope it will be ready for launch at the conference.
Gudrun Lange continues her hard work producing The Bulletin. The latest Bulletin is available to members on our website. Regular quality contributions are invited for peer review, and abstracts, letters to the editor and case studies can be sent (firstname.lastname@example.org).
There continue to be more and more papers published relating to this illness including several new ones looking at XMRV and related viruses. This time we have papers from 19 countries, including Israel, Turkey, Mexico, Thailand, Greece and China (see attachment 3 for links to abstracts).
Several papers on fibromyalgia feature this time too. This is important as we are having presentations on fibromyalgia at the conference.
In Norway positive recommendations have come through from the Directorate of Health regarding management of CFS/ME (see attachment 4). Meanwhile in the UK much contention and debate continues regarding the recommendations from the PACE trial.
Several awards have been forthcoming to those associated with CFS/ME in the past few months (see attachment 5):
The NOW Foundation presented its second annual Victoria J. Mastrobuono Women's Health Award to Nancy Klimas.
Mrs. Ellen Piro, president of the Norwegian ME Association, has been awarded the King of Norway’s silver medal for her services to ME.
Internationally respected biochemist Prof. Warren Tate, who last year won the Royal Society of New Zealand's top science honour, has now become a Companion of the New Zealand Order of Merit. His current research is involved with CFS/ME.
Prof. Peter Gow who is Associate Professor of Rheumatology working at the Counties Manukau District Health Board was made an Officer of the New Zealand Order of Merit at the weekend. Interestingly I helped Peter with some ME research in1978 and it was he who started me on this career path.
Please do write to us with any items of interest or about up and coming meetings or events in your area.
Correspondence can be addressed to me at Vallings@xtra.co.nz.
We look forward to meeting you all in Ottawa.
Rosamund Vallings, MB BS
Forthcoming CFS Events:
IACFS/ME Conference Ottawa,Canada on 22-25 September 2011. ‘”Translating Evidence into Practice”
2011 Frontiers of Retrovirology conference - Oct 3-5 in Amsterdam, Netherlands.
Following the success of the inaugural Frontiers of Retrovirology meeting in 2009, this second conference will bring together leading human retrovirus researchers to review current progress and to chart future challenges.
RV retrovirus of mouse origin has recently been implicated in diverse human diseases. At Frontiers of Retrovirology 2011, internationally renowned speakers will present their insights into the principles guiding the life cycle of endogenous retroelements, complex human retroviruses, and their pathogenic interactions with the hosts.
Norwegian ME/CFS conference in October 2011 with Dr. Nigel Speight
EMEA Norway member Norwegian ME Association is holding its next ME/CFS conferences
on 18th and 19th October in Oslo and Bergen, respectively.
Speakers will include Dr. Dan Peterson, Dr. Benjamin Natelson, Dr. Nigel Speight, Gudrun Lange
EMEA Germany member Fatigatio e.V. is holding its next ME/CFS conference on 17th-18th September in Stuttgart. http://www.euro-me.org/news-Q22011-006.htm
By Linda and Greg Crowhurst
Internet publication: http://www.stonebird.co.uk/A%20Practical%20Guide.pdf
This is described as a practical guide to supporting someone with ME, (particularly those who are severely ill) and it does indeed provide plenty of interesting information for family and friends of those with ME/CFS. It describes the illness, and then outlines strategies to provide care and understanding to the sufferer. The book is divided into 3 sections: Values and Attitudes, Dealing with Symptoms and Providing Practical Help. It is written with great understanding and empathy.
The stone bird represents the idea that you do not have to do anything to be of beauty and value in the world. Even if you cannot move, communicate or even think, you are still precious and your presence matters.
This book is only 23 pages so can be easily downloaded, and is an excellent resource for clinicians to recommend to careers of those with this illness.
—Ros Vallings, MB BS