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.
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.