ME/CFS Primer/Education Newsletters Volume 2, Issue 5 • August 2009

Volume 2, Issue 5 • August 2009

August 1, 2009
 

IACFS/ME Newsletter

Volume 2, Issue 5 • August 2009

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


 

CONTENTS

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

Swine Flu and CFS
Diagnostic Tests (?)
Selected Research and Treatment Update
Canadian Survey of CFS
CFS/ME Conferences
Submissions Welcomed!

Book Review

 




IACFS/ME President’s Letter


Dear IACFS/ME Members,

I hope you are all having a nice summer (or winter), depending on your location.
I would like to report on a number of positive developments. These recent milestones show that the IACFS/ME is becoming a much more “full service” organization for you, our membership.  Most notably, we now have two publications up-and-running on a regular basis:  an online peer review journal, the quarterly Bulletin of the IACFS/ME and this newsletter (published in Aug., Dec., and April). 

Under the able editorship of Gudrun Lange, PhD, we plan to apply for Medline indexing of the Bulletin in 2010.  We welcome submissions to the Bulletin (author instructions on our website: www.iacfsme.org).  Also on a positive note, Ros Vallings, MD, our New Zealand representative on the board and a highly regarded CFS-specialized physician, is editor of the IACFS/ME Newsletter. The Newsletter welcomes CFS/ME news reports worldwide, reviews of published studies, book reviews, and letters to the editor. 

These publications will help to fill in that two-year gap between our international conferences when members may rightfully ask:  What is IACFS/ME doing for me?  Now I can say, as president, that members worldwide are beginning to receive a steady flow of CFS-relevant information, from original research to news reports to book reviews.

We also are actively evaluating and responding to government programs related to CFS.  I testified to the US-based CFS Advisory Committee on May 28th about the 5-year CFS research program proposed by the Centers for Disease Control (CDC).  We, the IACFS/ME Board, subsequently submitted a critical review of the CDC plan.  The board advocated that the CDC make CFS a public health priority. To this end, the CDC should undertake high profile public awareness campaigns and professional education programs to fully legitimize the illness of CFS and reduce its stigma.  This is such a basic step to legitimacy that has found little government support in the US or internationally.

The board also recommended that the CDC support extramural research into the pathophysiology of CFS in order to achieve the critical goals of objective diagnosis and effective treatment—still unrealized after 25 years of research in this program.  Such efforts should eventuate in the identification of biomarkers that will justify a new objective case definition and the relabeling of CFS with a more appropriate and credible name. The bulk of our recommendations were adopted by the CFS Advisory Committee. Our statement is posted on the home page of our website (www.iacfsme.org).

Currently, we are concerned about the real possibility that the National Institutes of Health (NIH) will disband the CFS special emphasis panel which reviews most CFS grant applications in the US. I believe that the CFS panel should be retained as a specialized forum for review of CFS grants.  On other NIH review panels, CFS researchers often find that their grant applications are not seriously considered because the reviewers question the existence of the illness.  The board will be drafting a statement to NIH about this issue shortly.

I thank all of you for your continued support.

With 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  

Since our last posting quite a lot has been happening.  Gudrun Lange has produced an interesting journal edition of the peer-reviewed Bulletin of the IACFS/ME, and we are moving towards Medline application.  Membership and international involvement is being followed up closely by Ken Friedman and Staci Stevens with expansion of the Ambassador programme.  Formation of an international clinicians’ Internet group is in the wings.  We certainly welcome more international involvement both in membership and contributions to the Bulletin and to this newsletter.  If you are interested in becoming an ambassador representing your country, please let us know.  We would also like news of what is going on in your part of the world, and we are happy to add your contributions to this newsletter.  We want to keep our members abreast of current research and clinical matters.

I have recently had contact with the ME South African Society, MESA, and their organization is very tiny, run by one person and struggling to keep going with a small dedicated committee and very limited funds.  But they do manage to produce an excellent quarterly magazine, and provide support to members. (www.me.org.za)  It would be good to have contact with any S African doctors or researchers interested in CFS/ME.  Maybe this way we can provide educational advice, ideas and support, and expand our membership throughout this very large continent.



Swine Flu and CFS


Swine flu has been the big topic in medicine this year, and here in Australasia, we are experiencing this epidemic ahead of most of you, as it is the winter flu season here.  The illness has spread as expected, but most people have only had a very mild illness. Inevitably there have been a few deaths, as expected in any flu epidemic.  Those who have died have in general have been the frail and those sick with other serious conditions. 

Interestingly I have seen no CFS patients with the illness as yet.  This will be in part due to them staying at home out of contact with infection, and the fact that many CFS patients do not seem to succumb to regular infections very often anyway.  In Britain they are preparing for the epidemic and Dr Charles Shepherd, Medical Advisor to the British ME Association has produced excellent guidelines for management (download PDF here).  The drug Tamiflu has been taken by a number of my patients in past years with no obvious ill effects. 



Diagnostic Tests (?)


As always, there is a quest in the CFS world for a biomedical test which could provide a definitive diagnosis.  It is understandable that many sufferers are desperate for confirmation to give credibility to their illness.   New ideas abound as always, often to be dashed when further research follows.  Persistent viruses, RNaseL, biopsies, brain studies etc have all heralded hope.  Often studies have not looked at what is happening in other illness, and the trials need to be properly controlled, with large numbers of participants, comparing CFS with healthy controls and those with a range of other conditions. Studies need also to be replicated in different laboratories. 

Some of the tests on offer over the Internet and around the world are costly, and even if some abnormalities show up, this is not proof of CFS.  It may just mean “something” is wrong.  Those with CFS are very vulnerable to advertised hope.  Recently Dr Sarah Myhill in Britain has described a breakthrough series of tests checking for abnormalities associated with muscle mitochondria.  This may well be pertinent, but as yet there is no absolute proof that all with CFS will show positive results, and there maybe  false positives among different groups.  It may point the way to distinguishing specific “types” of CFS.  I am sure the research will be ongoing as it is associated with good research teams. 

Professor Kenny de Meirlier also announced his breakthrough test at a recent UK ME conference in London, looking at hydrogen sulphide levels in the urine – again the work needs confirmation with further studies before any firm conclusions can be drawn.  Hopefully this research will also be ongoing.  An article appeared in the London Daily Telegraph discussing this with comments from Dr Charles Shepherd. (Download PDF here).

There are however other exciting areas of research which may lead to that specific test for which we all hope.  Dr Jonathan Kerr in London continues his brilliant genomic work, and it is encouraging to see that his sub-grouping of genes matches sets of symptom categories.  Work by Dr Mary Ann Fletcher in Miami has also raised the possibility that neuropeptide-Y could provide an eventual reliable test.  We can only hope that this valuable work by these dedicated researchers will continue to be adequately funded.



Selected Research and Treatment Update


The Merge Group (ME Research UK) based in Scotland, continue also with their research and have produced a comprehensive list of recent papers published. Their papers range through gene studies, orthostatic intolerance and studies of arterial stiffness, and can be viewed on line.  Other interesting papers recently published include functional neuro-imaging, follow up of Gulf War veterans, issues relating to bowel symptoms, distinguishing CFS from depression and the work of Dr Sarah Myhill on muscle mitochondria (download PDF here).

New approaches to treatment are always at the forefront of the minds of most sufferers, and Younger and Mackey recently published the results of a pilot study using low dose naltrexone for fibromyalgia.  While this is not going to be of help for all sufferers, it may lead to further research into a potentially useful option (download PDF here). The use of oxymatrine (a potential immune modulator) was posed by Dr John Chia at the Reno conference, and I have been asked by many patients what this actually is.  I found a useful link describing the chemistry and use of this alkaloid sourced from Chinese Medicine.  (www.itmonline.org/arts/oxymatrine.htm)



Canadian Survey of CFS


A Canadian survey of 23 chronic conditions including CFS has been produced and reported in the newsletter of the ME/FM network of Canada. This Canadian Community Health Survey (CCHS) was designed by Canadian health authorities and conducted by Statistics Canada. The CCHS provides valuable information about the profile and impact of chronic health conditions. This information can be used to guide priority setting and resource allocation.

The results were recently published by the National ME/FM Action Network, a Canada-based patient support organization. The survey found overall that CFS/ME was ranked first among 23 chronic conditions (e.g., heart disease, cancer, diabetes) with respect to reporting unmet health needs (30%). The full report can be found in the attached document, courtesy of the National ME/FM Action Network. (Download PDF here).



CFS/ME Conferences


As well as having the opportunity to read the current research papers, there are other useful resources available.  DVDs were made of the last two IACFS conferences and can be purchased using the link www.instatapes.com/IACFS.  Samples can be viewed online.  A DVD of the London Invest in ME conference in May 2009 can be ordered through: www.investinme.org/index.htm.  Recently here in New Zealand, National TV produced a programme about CFS/ME looking particularly at how the illness had affected the lives of sufferers and their families.  The DVD of this half hour documentary can be ordered from www.opendoor.net.nz


Alison Bested a respected Canadian physician has written a further edition of her book “Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia” and I have reviewed this book below.  Dr Bested is the key person organizing the Clinicians Group and if you are interested in joining, please let us know.  A review of another book, The Spiritual Anatomy of Emotion, by Michael Jawer and Marc Micozzi can be viewed online at  www.emotiongateway.com, and I hope to obtain a copy and review it for IACFS/ME in the next newsletter.



Submissions Welcomed!


Please write to us with your ideas, comments, views, reviews of papers and books, 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).

Sincerely,

Ros

Ros Vallings, MB, BS




Book Review

HOPE AND HELP FOR CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA   (2nd edition) 

Alison C Bested MD FRCP(C),  Alan C Logan and Russell Howe
Cumberland House, Nashville TN, 2008

Alison Bested is a well known Canadian physician/haematologist, who has been involved with patients with CFS/ME for the past 14 `years.  This 2nd edition of her book provides an excellent overview of the illness, and then focuses on guidelines for diagnosis and management. There is a very useful, well organized, up to date and complete approach to pharmaceutical treatments.  As well as encompassing the medical model covering exercise, pacing and sleep issues, there are chapters by Alan Logan on nutritional and herbal approaches, mind-body medicine and complementary therapies.  Russell Howe addresses the legal aspects of coping with this complex illness. 

Up to date research is included throughout, as are some theories regarding Multiple Chemical Sensitivity and reference to issues such as heavy metal toxicity and oxidative stress. 

This is a book that is easy to read with clear diagrams, and I recommend it as an excellent reference for clinicians and patients alike.  There is a useful appendix with international links to appropriate websites.

-Ros Vallings, MD

 

 



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