The International ME/CFS Conference 2009 Postscript
It was our pleasure to have Hillary Johnson as our guest in London for the Invest in ME pre-conference presentation on CDCs 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 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 performed 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.
We have a page showing Professor Basant Puri’s cutting edge presentation – click here.
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.
Conference DVD
The DVD of the conference is entering its final stages of production and we hope to have it ready for distribution over the next week. The DVD will include the conference presentations and the pre-conference presentation by Hillary Johnson. The Hooper Interviews also continue with Professor Malcolm Hooper interviewing Dr Judy Mikovits, Dr Barbara Baumgarten and Hillary Johnson.
Details on ordering the DVD are here (click here for details)
http://www.investinme.org/index.htm
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tillegg 26-07-2009
Jeg oppfordrer alle til å kjøpe et eksemplar av denne konferansen og gir den i gav til legen sin. På den måten bidrar man til å informere om ME her i landet, samtidlig som man støtter det viktige arbeidet invest in ME gjør i forhold til ME saken. Jeg mener at innholdet på disse DVD platene kan snu den tankegangen at ME er psykisk eller ikke så veldig alvorlig, for jeg tror alt for mange lege tror nettopp det. Her kan vi slå to fluer i en smekk
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