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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).
Invest in
ME
Invest in ME UK Registered Charity Nr. 1114035 PO BOX 561, Eastleigh SO50 0GQ
Support ME Awareness - Invest in ME
www.investinme.org
Support ME Awareness -
http://www.investinme.org
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