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The 4th
International ME/CFS Conference 2009 took place on 29th May
2009 in London and was attended by presenters and delegates
from 14 countries and four continents.
The focus of the conference for 2009 was Severe
ME, an attempt to raise more
awareness of severe ME - a group of patients
who are not represented in research trials
and misunderstood by healthcare services.
Many believe that studying severe ME will
yield treatments and cures for this illness
and have repercussions for other services
including management of ME.
Following the successful
IiME International ME/CFS conference in
London in May 2008 which dealt with Sub
Grouping and Treatments of ME/CFS the 2009
conference looked at the subjects of -
The conference was robustly chaired by Professor Jonathan Brostoff whose
knowledge of the area was used frequently in
the question sessions.
A full
review of the conference will appear later.
Professor Basant Puri's presentation review
is here.
It was our
pleasure to have Hillary Johnson as our guest in London for the Invest in ME
pre-conference presentation on CDC’s influence on ME research throughout the
world. The presentation was impressive and shocking, telling some of the inside
story of how ME has been manipulated by a government agency. This has so many
parallels to the concerted campaign to misinform which has occurred in the UK
over the years.
Hillary’s
presentation will be available on our 2009 conference DVD but she has also added
it to her web site -
http://oslersweb.com.
The conference
version of the Journal of IiME has been updated to include both Dr. Daniel
Peterson's and Professor Kenny De Meirleir's abstracts for the conference - as
neither were available prior to the conference
[http://www.investinme.org/InfoCentre%20-%20Journal%20of%20IiME.htm].
The Whittemore-Peterson
Institute for Neuro-immune Diseases was represented with Annette Whittemore
giving the conference keynote speech, showing this amazing development. Dr Dan
Peterson gave a comprehensive lecture based on his 25 years of clinical
experience and the solid research using being performed at the WPI. This was
followed by a presentation showing the dynamics and power of science by the
WPI’s research director Dr Judy Mikovits. We look forward to seeing this
important work being published and validated.
Professor Garth Nicolson gave a very good
overall lecture on the role of chronic infections and complex illnesses. His
presentation was full of information to show the difficulties researchers and
clinicians are faced with when meeting this group of patients.
Professor Nyland based his lecture on two
recent epidemics in Norway. This has given researchers there a chance to do
follow up studies on the patients who have remained ill with ME like illness.
One outbreak was due to Giardia parasite and the other due to Legionella
bacterium.
Dr
Baumgarten showed us what can be done with
public funds when politicians are supportive
and patients' voice is being listened to.
The importance of defining the patient base
carefully using the Canadian consensus
document was made clear and she confirmed
the inadequacies of the NICE guidelines for
diagnosis.
Dr Kerr
has replicated and expanded on his previous
gene expression work and he showed us his
usual high quality research. His team
has looked at various infections linked with
ME/CFS (EBV, parvovirus, enterovirus,
coxiella burnettii and chlamydia pneumoniae)
and found among other things that the late
phase marker for EBV ( nuclear antigen IGG)
varied among patients compared to normal
controls with patients having lesser levels.
Dr Kerr and his team have also looked at the
possibility of developing a SNP (single
nucleotide polymorphism) based test for the
genomic subtypes.
Dr Chia
showed us his excellent, solid research on
enteroviruses which is confirming previous
work done in the UK. He is concentrating his
efforts in finding antiviral therapy against
enteroviruses. He has found Oxymatrine
to be beneficial for about 53% of his
patients.
Professor De
Meirleir preceded his conference presentation with a press conference in London
on the day before (May 28, 2009) entitled “ME: End of an Era of Medical
Negation" unveiling his findings from recent research which has included
examining many patients in Norway and displayed conclusions regarding the
complex mechanisms of ME/CFS pathogenesis, a diagnostic test, and directions for
therapeutic strategies.
A separate
study by Professor
De Meirleir et al. has been published In
Vivo,
http://bit.ly/fqKF5.
Here they observed intestinal overgrowth of Gram positive D/L lactate-producing
bacteria which are also known to produce H2S [hydrogen sulphide] in presence of
certain heavy metals as a survival defence mechanism.
Also present at the
conference was Marian Dix Lemle who is a science writer and has published a
hypothesis on hydrogen sulphide and CFS which can be found here http://linkinghub.elsevier.com/retrieve/pii/S0306-9877(08)00391-5
A full review of the
conference will appear later – see here. We have a piece showing Professor
Basant Puri’s cutting edge presentation –
click here.
The
progress being made in biomedical research
into ME, despite the lack of adequate
funding by national organisations such as
the UK Medical Research Council or the US
CDC again demonstrates that there is
absolutely no value in attempting to join
biomedical researchers with those who
advocate the psychosocial
view of ME (as advocated by the MRC and cynically implied by NICE).
Invest
in ME published its Journal of IiME [click here]
at the conference and abstracts of the
conference presenters' presentations are
included therein.
Please
use the links above to branch to different aspects of the
conference.
We
value and appreciate all the comments and feedback which we
received and we shall use these to attempt to improve the
conference for 2010.
Invest
in ME have produced a
DVD,
containing
the
complete presentations at the conference,
which can be
ordered here.
Many
thanks for all of the support we received.
Best
Wishes from all at Invest in ME
Support ME Awareness
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