Saturday, April 09, 2011

Quote It Saturday 3/12 - State of the Knowledge

I realized that in my haste to post my notes from the 2-day NIH ME/CFS State of the Knowledge Workshop yesterday, I didn't really sum up the conference or express my perspective on it....which is probably good for the notes to be objective, but I thought you might be interested in an quick overview, too.  Since I heard the perfect quote to accompany this overview, I thought I'd include that, too.

This is actually an approximate quote, since I listened to the book on audio, but I got the critical parts right:

As my friend Christopher Reeve said, Optimism plus Information equals Hope.

          - Michael J. Fox, Always Looking Up: Adventures of an Incurable Optimist
(I loved this inspiring memoir - you can read my full review at my book blog).

Overall, I saw a lot of reason for hope at this week's workshop.  True, there are some huge challenges ahead, but we've come a long, long way from where we were just a couple of years ago.

Just the fact that this workshop took place is amazing and exciting.  To have most of the top ME/CFS researchers (and some clinicians and patients, too) in the same room for two days, exchanging information on all the different aspects of ME/CFS is a stunning accomplishment.  In the equation above, the Information side is growing by leaps and bounds.  I told my husband that the workshop overall was a bit like the old blind men and the elephant tale - each scientist is focused on his or her own small, super-specific area of expertise.  But for two days, they all sat there together and listened to each other and exchanged ideas.  It's a good portend for the future.

Progress is being made in many different aspects of ME/CFS - the brain, the immune system, genetics, the autonomic nervous system, and more.  True, each person is focused in one area, but there seems to be true interest in working together and in seeing the picture of ME/CFS as a whole.  I think the participants in the workshop learned a lot from each other, and I believe, from the comments made during the summary session, that there will be more integration and cooperation among them going forward.

Every single person there seemed to understand the severity of ME/CFS and have an idea of its devastating impact on patients.  Not one single presenter talked about psychological causes or confused CFS with depression - that alone is a big step forward!

Granted, scientific progress often moves at a glacial pace - every single hypothesis has to be tested multiple times in multiple ways, but important advances are being made in every area of study.  I think there is a lot of reason for hope.


  1. I had similar thoughts after listening to the workshop. And you should read this because the blind "men" and the elephant was the exact way I described it as well - heehee

  2. Great minds think alike!


  3. I'm so thankful to you and upnorth for listening and sharing your impressions, Sue.

    I was unable to watch at first due to internet usage issues (I pay per mb) but then ended up unable to because my eyes were again bothering me.

    Laurel emailed me and told me she was listening to it which I never thought of!

    Of course I can go back and do that now I guess but I love that I can see what you all thought.

    I agree with you that there is room for hope. I have this sense that we are at a cross-roads with ME and change is coming. And I don't think it is all from government this time.

    I think we as patients have learned that change needs to come from multiple fronts: us, families, friends, doctors, researchers, government, society. I think it is really possible that a convergence of all these arenas is on the horizon.

    Again, thank you for using your precious energy to share what you learned with us.c