ME/CFS Primer/Education Newsletters Volume 3, Issue 1 • April 2010

Volume 3, Issue 1 • April 2010

April 1, 2010
 

IACFS/ME Newsletter

Volume 3, Issue 1 • April 2010

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


 

CONTENTS

President’s Letter
Welcome Message from Ros Vallings, newsletter editor

History
Clinical Guidelines
Research
XMRV Progress
Correspondence
Dates for your diary

Book Review

 




IACFS/ME President’s Letter


Dear IACFS/ME Members,

We are at a time of transition. And it’s not just the seasons changing. First, the leadership of the Centers for Disease Control (CDC) program for CFS has changed. I’ve recently spoken with Dr. Michael Miller, who represents the CFS program at CDC for the meetings of the CFS Advisory Committee. He made the following points about the program: (1) for now, it will continue to be funded as a line item from Congress; (2) a call for a permanent new head of the program will be issued shortly and the position is expected to be filled within 2-6 months of the announcement; and (3) the 5-year plan for CFS research is in progress. 

Although many of us are unhappy with the 5-year plan, it is already underway. I made the point to Dr. Miller that IACFS/ME would like to see more cooperation and collaboration with the external CFS/ME professional community in the implementation of the plan. One of our chief complaints with the previous leadership was the absence of meaningful contact and discourse between CDC and the professional community. Productive collaborations with experts in the field are possible in the domains of scientific research, educational outreach, and public policy. With broad-based initiatives, the CDC could significantly advance the understanding and recognition of CFS.

Importantly, Dr. Beth Unger, the interim chief of the CFS program will attend the upcoming CFS Advisory Committee meeting on Monday, May 10th in Washington, DC. (http://www.hhs.gov/advcomcfs/index.html) Note that the meeting has been cut back from 2 days to one and public testimony has been reduced to 3 min. from 5 min. If at all possible, I encourage you to either attend this meeting or to call in testimony as support from the CFS professional community may be critical to avoid a possible dissolution of this important committee. (Testimony must be called in from the US.)  If you’re interested, I ask that you contact me, at fred.friedberg@stonybrook.edu.

A second major issue is the possible inclusion of CFS as a somatoform disorder in the DSM-5 scheduled for release in 2013.  You should have received a detailed eblast about this in mid-March. Feedback to the DSM-5 Task Force from CFS professionals (submission deadline is 4/20/10www.dsm5.org) is especially important to address this disturbing possibility.

Of course, the publication of several XMRV retrovirus studies is of considerable scientific and clinical interest.  The initial US study published in Science was followed by three negative studies in European laboratories. A number of reasons for the divergent findings have been offered including population differences (e.g., more disability in the US sample), blood sample contamination in the US study, and differences in testing procedures.

It appears that several more XMRV studies are in progress. As an organization, we will follow the science to whatever conclusion is best supported by the evidence. Perhaps in another year we will have a better sense of the role of XMRV in CFS. 

Thank you for your continued support.

Best regards,

Fred
Fred Friedberg, PhD
President
IACFS/ME

 




Message from Ros Vallings, newsletter editor


Welcome to the April edition of the IACFS/ME newsletter! 



History

As we approach ME/CFS Awareness Day, 12th May, I thought it would be appropriate to look back at a little of the history associated with this illness. It has long been conjectured that Charles Darwin may have suffered from ME/CFS. On the 200th anniversary of his birth, an article in the BMJ has a very good overview (John Hayman. Darwin’s iIlness revisited. BMJ 2009;339:b4968). Diagnoses ranged at the time from the psychological (repressed anger towards his father) to Chaga’s disease following a tropical insect bite. It is indeed hard to make a firm conclusion, but from the description, much of his ill health could be accounted for with a diagnosis of CFS. I recently saw the movie “Creation” depicting his life story. The illness portrayed in this movie was really nothing like CFS, but despite my expectations, it is a worthwhile film.

In future editions of this newsletter, I would like to focus on some other historical episodes in the CFS saga, and would welcome your contributions.



Clinical Guidelines

It has been felt for a long time that a short Primer for physicians on diagnosis and management of CFS/ME is long overdue. A sub-committee has now been formed to produce a concise, accurate and up-to date publication, and hopefully before the next newsletter, we will have this ready. This will be particularly useful for the many physicians who deal with this illness in their everyday practice.



Research

A number of research papers have been published over the last few months covering issues associated with CFS. (A PDF file of abstracts of these papers can be downloaded here.) It is good to know that a body of research continues alongside the XMRV studies. Several studies relating to fatigue, a potential new test from Japan and the latest biochemical papers from Merge (UK) are included.  



XMRV Progress

Since our last newsletter, when there was an enormous amount of excitement about the study by Judy Mikovits and her team at the Whittemore Peterson Institute, there have been several further studies.  Unfortunately to date, none of these studies have yet replicated or validated the findings. The 3 currently published studies (abstracts can be downloaded here) from the UK and the Netherlands have come under some criticism, but it is still early days, and further studies are underway in other centres internationally. All those with CFS will be awaiting these results expectantly. One encouraging Japanese study has identified XMRV in some healthy blood donors. The WPI issued a statement on 18/2/10 as a follow up to these studies (http://www.wpinstitute.org/news/news_current.html). All of the excitement generated by the WPI findings has indeed stimulated much research and discussion. In fact the British Medical Journal has dedicated some of the issue published on 6th March 2010 to papers and discussion about CFS/ME (http://www.bmj.com/content/vol340/issue7745/). The issue also has some discussion about the first draft of the DSM-5. DSM-5 classifies CFS/ME as a psychiatric disorder, which is inappropriate. Our president, Fred Friedberg has written an excellent letter on our behalf expressing the Board’s concerns to the DSM working group.

Issues continue to be raised regarding the risks of H1N1 in relation to CFS. There is potential for some patients to develop CFS after H1N1 infection. The CDC is aware of the risk of Guillain Barre syndrome after H1N1 vaccination and have asked neurologists to report any new cases. http://www.cdc.gov/vaccinesafety/Activities/emergency/swine_flu.html
We need to be alert to the possibility that CFS could potentially also follow swine flu vaccination, or that those with CFS could relapse following the immunization. This does present a dilemma for physicians treating those with CFS. The antiviral drug oseltamavir seems safe for those with CFS who develop flu.



Correspondence

It is good to receive correspondence from members (attached here) and I welcome this in the hope that we can begin to generate some discussion. Ceara Hayden from Scotland is researching the experiences of those with ME/CFS, with particular emphasis on the role of patient-provider communication. She has a 20-minute online questionnaire and invites participants. We also have a letter from Ann Cavanagh on behalf of Dr Martin Lerner issuing a call to action for use of a common language in CFS evaluation and treatment. Tate Mitchell has sent out a request that the IACFS/ME should put out a statement regarding patient selection for XMRV studies. It does seem important that studies use the same criteria if they are to be of true value. We have also had contact from the European Society for ME (ESME). They have met recently and attached is a letter from Dr. Derek Enlander. He is one of their “think tank” members, and he too emphasises the importance of patient selection criteria. Meanwhile Judy Mikovits kindly offered to answer some questions sent in by members to help clarify some issues (see attachment here).        

I have reviewed the excellent book “Lost Voices” (below) and would welcome contributions reviewing any books you have read which may be of interest to our readers.  

Please write to us also with your ideas, comments, views, research in your country etc. (Vallings@xtra.co.nz). We also welcome abstracts for consideration for the Bulletin (greg@iacfsme.org). If you are interested in representing your country for IACFS/ME please contact Ken Friedman (friedman@umdnj.edu). If you have information about forthcoming conferences or meetings in your area, please let us know.


Sincerely,
Ros
Rosamund Vallings, MB, BS




Dates for your diary:

5th Invest in ME International ME/CFS Conference – 24/5/2010 - London
http://www.investinme.org:80/IIME%20Conference%202010
/IiME%202010%20International%20ME%20Conference%20Home.htm

ESME (European Society for ME) is happy to inform you about Prof. Martin L. Pall`s European Wonder Tour which focuses on the NO/ONOO cycle in diseases and therapy options. The tour starts on April 10th and Prof. Pall will be speaking in Germany, England, Italy, France and Spain. (Download attachment here for details). 

The first ME/CFS conference in Denmark will be held on the 28th of May, 2010 at Bispebjerg Hospital in Copenhagen. Organizers are the Danish ME/CFS Association and the European Society of ME (ESME). The conference aims to educate physicians and other healthcare professionals in how to recognize, diagnose and treat ME/CFS. http://www.me-cfs.dk/KonferenceUK/Information/

IACFS/ME Conference – September 22-25, 2011 – Ottawa, Canada




Book Review
  

Lost Voices, from a Hidden Illness
Compiled by Natalie Boulton

Wild Conversations Press (for Invest in ME 2008)

This book is a series of short accounts by those who are very severely ill with ME/CFS. Those writing are often children or teenagers, with additional information by parents. Many young people are featured, together with moving photographs of what it is like to live with such a disabling and devastating illness. Their deepest thoughts are portrayed on these pages. The accounts by family members include the reality and sadness for the whole family, coupled with some of the skepticism and difficulties encountered from friends and medical professionals. 

There is a forward by Leonard Jason and responses at the end by John Chia, Vance Spence, Annette Whittemore and Jane Colby. The introduction covers the background to the illness with some historical facts, and a good outline of the current situation regarding recognition and management.

All of those clinicians dealing with ME/CFS, other health professionals and families would benefit from reading this book. Although I found much of it quite disturbing in that so many people had been misdiagnosed or treated inappropriately, I feel it is an important addition to the literature, and in many ways a symbol of hope that things can only surely get better as we learn more.  

My only reservation regarding who should read this book would be that it could be very upsetting for a young person recently diagnosed to read of the possible potentially devastating outcomes for sufferers of this illness. 

My thanks to “Invest in ME” for sending me a copy of this beautiful book.


—Ros Vallings, MD

 

 

 



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