Saturday, June 2, 2012

InvestinME roundtable discussion - May 30-31, 2012


Each year more and more science on ME/CFS comes out of the InvestinME conference in London. This conference is the brainchild of Richard and Pia Simpson. They started InvestinME in order to elevate serious biomedical research into this illness and to combat the vicious political efforts to minimize or destroy the physiological underpinning of this illness.

What these two individuals have accomplished in seven years is truly astonishing. How these two individuals have been able to bring this to fruition is beyond comprehension. I cannot see how they are able to do what they do. Clearly, it is a labor of love - and year-by-year, it is bearing fruit.

Much of the success of this conference stems from the fact that it is organized by individuals directly "attached to the illness". The inspiration comes from deep down, from the heart - and this conference has none of the trapping of other or larger ME/CFS conferences that are managed by the government (in US) or “professional” organizations that have constituent groups to please. InvestinME is interested in one thing: serious biomedical research into this nasty illness called ME/CFS. They will do anything necessary to facilitate this happening.

In its seventh annual conference in London on June 1, InvestinME found its sharpest focus yet. Having attended five conferences, this fact was quite apparent to me.

In the past few years the conference has expanded beyond the intense one day of presentations. In 2009 they added a dinner with a guest speaker. This allowed for more informal discussion amongst participants. The 2009 dinner featured a talk by Hilary Johnson entitled "The Why" - A Speech in London. Those of you who saw this talk will remember it. Hillary is such a fine writer. Those of you who want to read a terrifically emotionally compelling book should buy her second book -My Mother Ruth. It is really, really good.

Later, or simultaneously, a day-before afternoon brainstorming session amongst presenters was added. These events allowed for a rich exchange of ideas on various ME/CFS scientific subjects. The organizers' idea was to put serious researchers in a room and let them go at it. This and the dinner provided expanding social interactions amongst participants, allowing for more informal exchanges of ideas and inclining people towards forming collaborations. Often it is in such settings that connections are made and scientific relationships are forged – provided that the participants are open to such exchanges. InvestinME does everything they can to make this happen, seeking out “like-minded” individuals, those willing to engage this complex illness in an interactive fashion. A great example of this is Dr. John Chia, who was invited back this year but felt he did not have enough new data to present. InvestinME is an inclusive organization. They want to bring people in.

Over the last two years, this pre-conference format has been expanded, and this year there were two full days of private discussions amongst the participants and invited guests. These scientific discussions focused on ME/CFS as an autoimmune illness, an idea that was generated by the Norwegian Rituximab study of one year ago. The Clinical Autoimmunity Working Group included the conference participants as well as some of the very best in the field of immunology and autoimmunity.

The CAWG included Dr. Don Staines, Dr. Dan Peterson, Dr. Andreas Kogelnik, Dr. James Baraniuk, Professor Hugh Perry, Professor Maria Fitzgerald, Dr. Sonya Marshall-Gradisnik, Professor Indre Ljungar, Dr. Mario Delgado, Dr. Oystein Fluge and Dr. Olav Mella. Also attending were Dr. Noel Rose, Director of Autoimmune Disease Research at Johns Hopkins, and Professor Stephan Miller. Brief profiles can be seen here.

Several of the immunology/autoimmunity invitees had no previous experience with ME/CFS. The idea was to draw on their rich experience with autoimmunity and to try to find connections to ME/CFS.

The pre-conference dinner this year was attended by about 40 invited guests. In a very moving moment, a candle was lit in memory of a 19-year-old Norwegian woman with ME/CFS, who had recently died in her sleep. Following the candle lighting, Norwegian journalist Jorgen Jelstad gave a quietly firm and inspiring talk about the importance of words in describing, depicting or characterizing this illness - "Words Matter".  Hopefully, copies of this speech will be available to others. His talk had the great theme of optimism to it. Jorgen has written a book in Norwegian on ME/CFS entitled “De Bortgjemte” (The Hidden Ones).

To me it seemed as if Jorgen Jelstad picked up and amplified the reverberations that were circulating in the dining room that evening - and that were equally on full display at the conference the next day. Optimism ruled the day in a way that I have never seen before. The message that was brought forth over and over is that serious ME/CFS research had "turned a corner" and good things are going to happen in the near future. A talk by Dr. Dan Peterson the next day emphasized this point. 

This type of research meeting sets a very important precedent, one that needs be continued - and it will be. Several other such efforts in the past have died on the vine, and this is very sad. This heightened InvestinME effort is a breath of fresh air.

It has come to my attention that Dr. Andreas Kogelnik is sponsoring a private research discussion in NYC in June on various important matters in ME/CFS treatment and research. I am sure that there will be some public mention of this exciting event. It is also expected that the Mt. Sinai ME/CFS Center will be holding another conference this year, and maybe they too will adopt this format of concentrated private discussion among “like-minded” people. In this fashion, things might actually happen, and we can avoid some of the pitfalls of the past.

It should not go unnoticed that two very fine writers - Hillary Johnson and Jorgen Jelstad - have bookended these recent InvestinME conference dinners. We can speak of heightened and serious research and that is very good. But we cannot forget the voices that guide us, guide us emotionally through this torn landscape, delivering inspiration, direction and, most importantly, the history of this very serious illness. Great thanks needs to be given for these voices.

12 comments:

  1. Thank you for your report, Chris.

    I am extremely glad for the conference.

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  2. In the spirit of your last paragraph, Chris, I would like to thank you for your tireless efforts and for the vital role you play in chronicling and communicating these efforts. As I read I was struck by how much I have come to depend on your voice. Thank you.

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  3. Thanks Chris for capturing the mood of the conference as always.

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  4. Thank you Chris! Reports of this kind of events are really important to keep the spirits up! It is so hopefull people talking seriously about me, I mean ME ;-)
    Also thank you for explaining more about Jørgen. I follow him but did not know his background and that his name on Twitter ment 'The hidden ones'.

    Best Wishes!
    Esmé

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  5. Thanks for covering the conference for us, Chris. I've also read Jorgen's tweets from the conference quoting Dr Peterson and others saying that they are starting to see the light at the end of the tunnel and that we're getting to critical mass now with the research, a huge surge of optimism. As someone who got this disease 25 years ago, I feel a lot more optimistic today than I did on Thursday.

    Thanks again!

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  6. Thank you, Chris! It was very nice to meet you at the conference, even though it was a short meeting on a packed agenda. Appreciate your work!
    Best regards,
    Jorgen Jelstad

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    1. Jorgen, when I read your book title, I wanted to say that I am reading a book of mythical fantasy by the English author William Horwood about a people he calls the Hydden. Nothing about us, just the coincidence of a name. But then, about us, is the film by Rik Carlson of www.vtcfids.com which included excellent interviews with people with ME/CFS, called, "Invisible". I think the name of your book is right on target!

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    2. Correction: website is www.vtcfids.org

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  7. I hope Jorgen or someone can post the "Words Matter" speech.

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  8. very good to read this, chris. thank you. -- rivka

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  9. was there any discussion of gcmaf? -- rivka

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  10. So good to hear something positive. Thanks for the report Chris!

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