The 4th Invest in ME

International ME/CFS Conference 2009

Management, Treatments and the Latest Advances in Research into ME/CFS


From Invest in ME 

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 ME Clinic

  • diagnosis of ME/CFS

  • treatments for ME/CFS

  • epidemics of ME/CFS

  • news from the latest biomedical research into ME/CFS

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 -

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 [].

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, 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

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


Last update: 22 October 2011