ME/CFS Primer/Education Newsletters Volume 3, Issue 2 • August 2010

Volume 3, Issue 2 • August 2010

August 1, 2010
 

IACFS/ME Newsletter

Volume 3, Issue 2 • August 2010

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

 

CONTENTS

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

History
IACFS/ME Activities
Conferences
Komaroff Video
Research
Social Security Issues
Correspondence

Forthcoming CFS Events

 

Book Review

 




IACFS/ME President’s Letter


Dear IACFS/ME Members,

I hope you are enjoying the season (summer for most of us; but winter for some, including Ros, our Newsletter editor from Down Under). The big news item for this letter is the (US) government intervention in the recent XMRV studies. The body of this letter has been posted on our website, www.iacfsme.org.

Hold on XMRV Studies
As you may know, a positive XMRV study in CFS conducted by a NIH/FDA research team was accepted for publication in the Proceedings of the National Academy of Sciences (PNAS) but was then put on hold apparently in June. As reported in an online editorial in Nature (July 2; http://www.nature.com/news/2010/100702/full/news.2010.332.html), one scientist familiar with the issue said that the journal's editor-in-chief sent the paper out for further review after government agencies requested the publication delay. That review came back with requests for additional studies.

Stephen Monroe, director of the CDC's Division of High-Consequence Pathogens and Pathology, called the delay a "strategic pause" given the conflicting findings between the CDC’s own XMRV negative study in CFS   -- also put on hold but recently published in Retrovirology --and the positive XMRV findings of the NIH/FDA group (still unpublished). Of course, we’re concerned about a full airing of the scientific data on XMRV.  But it appears that the transparency and timely reporting that is so essential to science was not in evidence in this unusual government action.

Examining the Rationale of the Hold
Although the specific purpose of the hold was the subject of speculation among scientists and others, it was not clearly explained by any government official or journal editor. If the purpose of the hold was to re-examine conflicting data with an effort toward reconciling disparate findings, the approach taken here did not achieve this goal (as of this writing).  In my view, if the extraordinary step is taken to delay conflicting peer-reviewed studies accepted for publication, then both studies should be held until all further analyses are done. 

Once all additional work is completed, the research groups should review each other’s manuscripts. This should be followed, in one of the journals, with a thoughtful discussion among the investigators that examines the discrepancies between the studies with the goal of providing informed recommendations for subsequent research. Finally, both articles should be published simultaneously or as close to it as possible. This process has the potential to advance the science.

By contrast, the CDC article alone was published weeks ago without considering or even citing the findings of the PNAS paper. I argue that the CDC paper should have been held until its authors could respond to the NIH/FDA study when its additional work is completed. If there’s still time, I would like to see the CDC and NIH/FDA research groups have a discussion of their disparate findings with the aim of publishing their talks in the issue of PNAS that contains the NIH/FDA study.

Implications of a Second Positive XMRV Study
Once we get past the hold period, the publishing of the second XMRV positive paper is likely to change the nature of the debate.  Prior to this second positive report, the original Science paper was becoming an outlier study that could be dismissed in light of several published failures to replicate.  With the new replication, the XMRV link to CFS, whatever it may be, will become an ongoing controversy that demands resolution of key issues such as the differences in testing protocols for XMRV as well as the characteristics of patient groups that are tested. 

XMRV and Ottawa 2011
Our Sept. 2011 biennial conference in Ottawa will devote a full session to XMRV. And we will put together an expert discussion panel representing different points of view about XMRV.  This is the kind of scientific forum that we need to constructively address this ongoing research issue.

Best regards,

Fred
Fred Friedberg, PhD
President
IACFS/ME

 




Message from Ros Vallings, newsletter editor


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

The past few months have been a time of excitement for the large community of those with CFS/ME and those caring for them. With the emergence of the XMRV research nearly a year ago, there has been an upsurge in further research in virology as well as a growing interest by top researchers in all aspects of this disease. This is evidenced by the growing number of published papers, medical meetings and conferences. I have outlined some of these developments below.



History

I will, as before start with a little background history. Here in New Zealand, we are this year celebrating the 30th anniversary of the founding of our national association, ANZMES. I was interested to learn that we were in fact the very first established CFS/ME society in the world. It is great to feel that our tiny nation in the South Pacific is a world leader! The awareness here in NZ grew largely due to the publication of the book by a sufferer, which I have reviewed below. Although this was published those many years ago, it is still a worthwhile read to understand just how hard things were back then. What a long way we have come. It would be interesting to hear from representatives of other CFS/ME societies around the world, so please write and tell us about your story.

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.



IACFS/ME Activities

This has been very busy time for your board. Several members have attended international conferences in England and Japan. The membership committee is continuing its endeavours to enlarge our ambassador programme, aiming for representation from many more countries. The task of an ambassador is not onerous, and if you are interested in involvement, Ken Friedman is coordinating this (friedman@umdnj.edu). This will provide opportunity for worldwide cooperation and sharing of interests, educational materials etc. 

The guidelines committee is actively involved in producing a concise educational Primer for health professionals. This is proving to be hard work and it is progressing well. We have co-opted a number of other experts onto this committee and we have a well balanced international team, some of whom have been able to meet up to work on sections specific to their expertise. 

Gudrun Lange has continued her hard work as editor of The Bulletin, which is proving to be a well read and top quality journal. We welcome abstracts for consideration for the Bulletin (greg@iacfsme.org).



Conferences

I was fortunate to be able to attend the 5th Invest in ME conference in London on 24th May 2010. This was an inspiring day, which included presentations from several of our board members. My report on this conference is attached (attachment 1). Judy Mikovits received a standing ovation for her presentation, bringing us up to date on her XMRV research.

A DVD of this conference can be obtained by ordering on line from:  http://tinyurl.com/3a6u4ob

Denmark’s first ME/CFS conference was held on May 28th, 2010. The DVD of that can be ordered by e-mail:  post@esme-eu.com. PowerPoint presentations of some of the lectures will be posted soon at:  http://esme-eu.com/powerpoint-presentations/category202.html

Suzanne Vernon attended the 6th conference of Fatigue Science in Osaka, Japan 24-26 June 2010, and her presentation was on the current status of CFS research. I am hoping we may be able to get a translated report of the conference for our next newsletter.



Komaroff Video

An excellent on-line video produced in by the Massachussets association is available of Professor Anthony Komaroff discussing many aspects of CFS: http://www.masscfids.org/news-a-events/2/221.



Research

While it is disappointing that as yet no true replication studies of Dr Mikovits’ work have validated the presence of XMRV in CFS, many research centres around the world are now working in this area. It was particularly upsetting that the CDC had in fact held back the publication of a study claiming to have found the virus in CFS patients. But it is hoped this situation will be rectified. Meanwhile many useful papers have been published focusing on XMRV (attachment 2 for abstracts).

Dr Judy Mikovits also has recently commented further on the detection of XMRV in blood cells of patients with CFS.  

One of the big issues that has emerged throughout the ongoing XMRV work is whether it is safe for those with CFS/ME to donate blood. On 10th April, Canada put a ban on blood donation by those who had had CFS. And in June the US organization AABB formed a task force to study the transmission potential of XMRV. (http://www.medscape.com/viewarticle/723716). CFIDS are hosting a webinar on XMRV and blood safety with Dr Louis Katz on 12th August, 2010 at 2 pm.

While there has been so much focus on XMRV, we must not forget that other important CFS/ME research is going on around the world (attachment 3). Merge (UK) continues to do exciting work. Their quarterly publication, ”Breakthrough” available online, updates the research. (www.meresearch.org.uk)

A paper looking at the case definition has been simplified for making a reliable diagnosis of fibromyalgia.  Another paper looks at biomarkers in CFS and another at cytokine networks.

The British ME Association have published the results of a very large wide-ranging survey of CFS/ME patients looking particularly at treatments (attachment 4) and it is interesting to compare a similar survey done in Norway in mid 2009. At this stage the British evidence is likely to generate some valid research to assess further whether approaches such as graded activity and CBT have a place in the management of CFS/ME.  The negativity regarding GET demonstrated in these surveys may in fact be due to patients pushing themselves or being pushed too hard. Dr Shepherd’s comments are however very appropriate.



Social Security Issues
 
One of the battles often fought by persons with CFS trying to obtain Social Security Disability Insurance and SSI benefits was resolved with the adoption of Social Security Ruling 99-2p. In this binding Ruling the Social Security Administration set out guidelines for adjudicators and judges to follow for claims based upon CFS. This ruling removes at least one of the barriers faced by claimants. (Full article in attachment 5)



Correspondence

A further letter from one of our members, Tate Mitchell, is appended (attachment 6). He feels very strongly that we should ban research papers which use the Oxford criteria for diagnosing CFS. We think CFS/ME papers using this definition can sometimes be important, and are not to be ignored, but we must aim to educate our peers to use a better definition (Fukuda or Canadian). We need acknowledge too that those using the Oxford criteria may not be giving us the same valid answers. Your comments on this or any other matters of importance would be welcome. Correspondence can be addressed to me at Vallings@xtra.co.nz.

Please write to us also with your ideas, comments, views, research in your country, etc. (Vallings@xtra.co.nz). If you have information about forthcoming conferences or meetings in your area, please let us know.


Sincerely,
Ros
Rosamund Vallings, MB BS




Forthcoming CFS Events:

1st International  workshop on XMRV sponsored by NIH and Virology education on 7-8 September 2010, Bethesda, Maryland

International CFS/ME Conference (covering diagnosis and therapy) in Dortmund, Germany on 25-26 September 2010 – contact Fatigatio, Albrechtstr.15, 10117 Berlin. info@fatigatio.de

International CFS/ME Conference/workshop Gold Coast, Australia on 3-4 December 2010 (by invitation only)

IACFS/ME conference Ottawa,Canada on 22-25 September 2011.

 



Book Review
  

The Mile High Staircase
By Toni Jeffreys

Hodder&Stoughton, 1982

This book was written by an educated academic woman who contracted ME in 1977, and it is a moving account of her struggles to cope with this illness and gain recognition medically. It was written at a time when little was known about the illness, and it was largely denied as a real physical illness by many clinicians. Although much has been learnt about CFS/ME since this book was written, it is still an important and worthwhile read to provide insight into the earlier difficulties many of our patients will have experienced. Some clinicians may feel uncomfortable with some of the indictments in this book, but it is an opportunity to give thought as to how our patients may still perceive us. There are some useful appendices regarding diagnosis and management with a bibliography of the time. There is also an interesting time line of the rarely documented history of the illness from 1934-1977. 


—Ros Vallings, MB BS

 

 



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