Monday, January 24, 2011

InvestinME conference speakers - May 20th

The Invest in ME conference has just announced the speakers for their May 20, 2011 conference in London. The speakers are:

David Bell
Annette Whittemore
Judy Mikovits
Kenny de Meirleir
Jose Montoya
John Chia
Professor Olav Mella and/or Dr. Oystein Fluge
There will be additional speakers, to be announced later.

InvestinME is run by Pia and Richard Simpson, along with other visionaries. This is their 6th conference, and each year they focus tighter in on research and treatment into ME/CFS. The conference is compressed into one long day of presentations. Presenters have various opportunities on the surrounding days to have interaction and to exchange ideas. As they say, "shit happens" here. The Patient Advocate has seen it first hand. Various relationships between clinicians and researchers have been forged at this conference. A large amount of information is disseminated worldwide through DVDs of the lectures.

The sponsors of this conference make a conscious decision each year to focus attention on the research subjects that they deem to be the most important. Recently, in the past few years, their choices have attained "a feeling of inevitability". This, no doubt, is linked to the October 2009 Science paper. No one knows where this is ultimately going, but these sponsors are going to push things along and push hard.

InvestinME does not seem to have a larger "ME/CFS industry" to please. This stands in sharp constrast to the IACFS conference, which has the "sink trap" approach to programming. Everything is on the table - hence nothing is on the table. The Patient Advocate has suggested to the fellow who runs the IACFS that he "take a page" from InvestinME, but he is not interested.

The InvestinME conference is a hard-hitting, intense day of lectures. Someday this, or something similar, will occur every three or six months. The August conference at the Whittemore Peterson Institute in Reno was a good start is having more exchange. We saw the effect of this on the recent lyme conference, where various ME/CFS clinicians made presentations.

The InvestinME sponsors labor long and hard to bring their annual conference to realization and theirs is a devotion of love. Their effort is wildly understaffed and underfunded. If a reader is looking for a place to give money, please consider this organization. They are the best. It is ironic that this focussed event takes place in the UK, a back-water for scientific research and treatment into this nasty and debilitating illness.

From the PA's perspective, the InvestinME conference is linked temperamentally with the Whittemore Peterson Institute. Both these organizations, in spite of their different qualities, spring from patient/advocate fueled, research-driven motivations. Neither of these organizations have a desire to be permanently ensconced in this problem.. They want to solve the illness and go back to their lives.

The WPI's Judy Mikovits and Annette Whittemore will be back this year, for the third year in a row. Joining them will be researcher/clinicians of the first order: David Bell, Jose Montoya, Kenny de Meirleir, and John Chia. This will be Dr. Chia's fourth consecutive year at this conference. Hopefully his son Andrew will be able to attend this year. The Patient Advocate looks forward to hearing of Dr. Chia's continuing research into enteroviruses, and his take on recent developments in XMRV research. Dr. Mella, and/or Dr. Fluge will be presenting information on the rituximab trial that they are currently running in Norway. Rituximab is a promising treatment for a subset of ME/CFS.

Those is attendance are apt to hear the latest ideas of testing for and research into XMRV - as well as various treatment possibilities. de Meirleir certainly will present his experience of treatment protocols with GcMAF, artusenate and Nexavir. Perhaps there will be discussion of peptide t or stem cells? Dr. Montoya undoubtedly will present his work on a diagnostic and tracking cytokine panels, as well as other significant work. Missing at this point is the input of stem cell treatment represented best by Paul Cheney and Neil Riordan. Dr. Cheney gave a talk at this conference last year. Perhaps Ila Singh will be added, or Professor Jill Belch and her colleagues from the University of Dundee? Whatever happens, the Patient Advocate knows the conference will represent the most progressive and dogged approach to cracking this illness.


  1. Wonderful line-up! I sure hope they get Ila Singh, too; I'm dying too hear of her autopsy study results.

    Let's see: State of Knowledge in Bethseda on April 7-8, CFSAC in May (anyone hear of dates yet?) at the NIH, and then IiME in London. This is going to be a great year for ME/CFS to come out of the woodwork and into the light.

    Now, how do we get media attention at all of these meetings?

    Ya know, I sort of feel sorry for the governmental agencies that are going to be left in the dust before very long...

    Thanks, Chris!

  2. I was lucky enough to go last year and plan to book this years event shortly.

    I got my hands on the DVD of the 'round table' conference with Profs Hooper, Huber, Jason, Mrs Whittemore and Drs Cheney, Chia, Mikovits and Klimas. It was riveting.

    I must admit, I did feel sorry now and again for Prof Huber as Dr Mikovits was taking no prisoners and showed clearly that as well as being a first class scientist she is a caring and committed human being.

    I believe her energy and focus comes from her outrage at the contempt shown for patients and the corruption of the scientific process.

    The same goes for the others round the table who give us abandoned people hope when it's in short supply.

  3. I sure hope Dr. Singh will be present as well, but you can bet that if her study(s) have not yet been published, there's no way she'll reveal any of the results.

    Also, I am very interested to see what Dr. David Bell will have to say. He has not sent out any of his newsletters in some time. I understand he is working with Dr. Hanson at Cornell on an XMRV study of the original Lyndonville group.

  4. As always, Invest in ME is lining up excellent speakers, and promises to be another great conference. Thanks for sharing this information, Patient Advocate.

    Patricia Carter