Invest in ME Newsletter

Welcome to an Invest in ME Newsletter Supplement - September 2009

THE PROOF IS OUT THERE -  PART I

Dr. John Chia (speaker at the IiME conferences of 2008 and 2009), and his son, Andrew have recently published a paper on enteroviruses following their continuing research.

The paper, published online in July 2009 by the Journal of Clinical Pathology (click here), reiterates what Dr Chia stated at the IiME conferences, that his results support the work carried out by the late Dr John Richardson all those years ago.

It is interesting to examine the implications of his studies.

The Chias reported on adult cases of intussusceptions (the enfolding of one segment of the intestine within another) associated with enteroviruses which occurred within a three-week period. After performing virologic studies (including viral RNA detection) it was determined that contaminated tap water was implicated in the outbreak. Better monitoring of drinking water may prevent other cases of non-polio enterovirus infection.

The implications of contaminated tap water causing harm to millions of people could be enormous for governments, insurance companies, society. Dr. Irving Spurr stated at our 3rd International ME/CFS Conference in 2008 that enteroviruses are not destroyed by chlorination.

For years governments, organisations and individuals have been denying the fact that ME is an organic illness - if not always in words then certainly in deeds. Every ME advocate or ME support group knows from experience how difficult it is to get publicity or understanding or support for the illness. It has been inconceivable that ME is not scientifically examined and that no biomedical research is sufficiently funded.

Would there be a reason why governments and Chief Medical Officers and Medical Research Councils fail to engage with patients or only offer policies based on procrastination? Is this why the media is so silent regarding the scandal of ME?

Time will tell.

We will report more on this in the future.

THE PROOF IS OUT THERE -  II

It was evident again from the 2009 conference that biomarkers are present already for ME. Dr Daniel Peterson mentioned this.

He mentioned that cardiopulmonary exercise testing (CPX) was useful in separating true fatigue from perceived fatigue as it measures Peak Oxygen Consumption (VO2), Anaerobic Threshold  Heart Rate, Blood Pressure and Ventilation. Dr Peterson mentioned the VO2 MAX test as a universally accepted and straightforward test to be used to judge disability, thus providing objective information for assessing patients' disability claims, for example.
Of course, this is impossible for severely affected patients who are unable to attend clinics for examination but may help some in avoiding endless rounds of proving disability with government departments.

More on the International ME/CFS Conference 2009 DVD.

Norwegian Trials

A Norwegian study - "B-cell Depletion Using the Monoclonal Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-blind, Placebo-controlled Study" - is taking place at Haukeland University Hospital in Oslo, Norway (click here).

Based on pilot patient observations the investigators anticipate that chronic fatigue syndrome (CFS) patients may benefit from B-cell depletion therapy. The hypothesis is that at least a subset of CFS patients have an activated immune system involving B-lymphocytes, and that B-cell depletion may alleviate symptoms.

The results of the trials are expected in 2010.

IiME Fundraising

Our thanks to Crystal and her supporters who raised funds for Invest in ME in the Adidas Women's 5k Challenge in September 2009. All fundraising and donations we receive go directly to supporting projects related to better education about ME and biomedical research into ME.

We are currently hoping to raise funds to cover the printing of a new batch of Lost Voices, the 2010 conference and a number of other projects being initiated now. We hope to have some news soon regarding these projects.

ME Fact

The Whittemore-Peterson Institute Bio bank the world's largest ME/CFS sample repository of patient and sample data and contains more than 5000 samples in a 25,000 sample capacity cyrostorage freezer. It is fully indexed and Fully categorized, searchable database and is contained in a bio-processing lab for sample preparation (http://www.wpinstitute.org).

Best wishes to all

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