The Learning Curve is steep but worth climbing

This past weekend I went to Reno, NV to a conference of the International Association of Chronic Fatigue Syndrome and Myalgic Encephalitis (IACFS/ME-- ME is the British name for CFS). The doctor I'm working with is the outgoing president of the organization

I really had no clue of what to expect. I have been to NOW conferences and I have been to bus conventions (my motor coach tourism conferences through Ford's) but this was my first scientific conference. It was also the first time we were going to publicly announce the opening of the new clinic and our programs. We've been talking to plenty of folks but this was really the first "mainstream" announcement. I had no idea what to expect. Nancy made all the arrangements for me so I was slightly out my OCD element. I knew where it was but not if I was registered or that there was a room, schedule, etc. I knew it would all be fine, because Nancy said it would, but still I was slightly nervous and anxious. I had materials that I created but really no sense of how they would be received etc.

So after three legs of travel (Miami to Atlanta to LA to Reno) I arrive at a place that is a cross between a neon, glass modern hotel and a Italian looking institution of some sort. This is the Peppermill Resort. For absolutely no good reason, I forgot that Reno is a gambling town. The resort was huge and had a monster casino swathed in neon blue on the ground level.



The room Nancy got for me was right next to hers. It amazing. It was a huge room with a big flat screen tv. Then there was the sitting room with a second flat screen tv. Then, in the palatial bathroom with jacuzzi, shower stall and separate toilet was the third, smaller flat screen. That's more tvs than in my apartment!





The meeting began on Thursday with a patient day. There were about 200 patients there and they were my target. The first half, I sat at my table devotedly like a good exhibitor should. I was bored out of my skull and and starting to doubt the whole process. finally I poked my head into the meeting room and was fascinated not only by the material but by the patients. Soaking up everything that was said like sponges. The information presented was on a variety of levels. One of the first things said at the conference was that the doctors and scientist respect the patients and their level of knowledge and don't like to talk down to them. They're so right. Some of those patients are like experts in the field. They have had to learn and research and study and stay on top of all this material for their own survival or that of a family member. These folks can quote you any number of statistics on their own health and that of studies, tests and research projects. The afternoon picked up with many people stopping by the table and sharing their love of Nancy as well as their need for a doctor to treat them.

That's when I started talking to the patients and listening to their stories. One of the earliest visitors to the table was a woman whose 27 year old daughter has Chronic Fatigue Syndrome (CFS). She told me a story of her daughter going to an urgent care center in Reno and being told to see a psychiatrist, that it was all in her head. Now why is this story important? Because it happened in the last few years. This is not some old story from 1972 which has lived on in infamy. The woman is only 27 and has only had CFS for the last few years. Now to make this particular story even more unbelievable -- there is a leading practitioner of CFS treatment in the Reno area. There are very few across the country but one of the most respected is right there!!! And so began my few days.

Patient after patient shared their struggle and journey. Some have been struggling for 15 or 20 years. For others, its much more recent. Most had a diagnosis but not all were getting treatment. Many were on disability and unable to work. For most, there would be an inevitable crash following the conference but for them it was worth it.

By the end of the conference I was a bit overwhelmed. The urgent need for treatment, validation, basic belief that this is a real medical condition, is unbelievable. But there was another thing that struck me as well. The strength and sheer will and determination of these women (all patients really, but CFS disproportionately affects women) was huge. And they would never describe themselves as strong. In fact, I think they are so used do chronicling all the things they can't do or can't do anymore, I don't think they have any real awareness of they do accomplish.

On Saturday, I sat a chatted with a woman who needed some referrals. She sat down to chat and we just clicked and started talking. She told me her story and I'll fast forward to the end. After a period of being seriously sick and staying with a friend out of town, it finally become too much for the friend and she returned to her home town sick and alone. She has family in the area, she said, but they don't believe she's really sick. All of a sudden it hit me. The full culmination of the stories I had heard all weekend. I picked up my life and moved from DC to FL leaving behind all my friends, network, comfort zone and more. But I did it voluntarily, with friends and a small but powerful support system here in Miami and a new job to start. And still, I was scared, anxious and often lonely once getting here. This woman picked up, traveled away from her caretaker and moved to a place where she had no support system, no help or care, no primary care physician and family hostile to her her sickness. Wow. It hit me. How in the world did she have the strength to do that? When I commented on her strength she looked at me funny. "Nobody thinks I'm strong," she said. "No one thinks of us that way." I told her my story and said, "I think you're amazingly strong but its not what I think, do you think you're strong?" This was definitely a new spin on things for her.

Then there are the doctors and scientists. Much like Nancy, this small group of clinicians and researchers have dedicated their careers to researching this enigmatic group of symptoms, ailments and medical anomalies. They are in search of a blood or biomarker that can be used as a definitive test for CFS. They know that not only will that advance the science but also go miles in the acceptance of CFS as a "real" medical Syndrome.

During one presentation, a talk on psychological implications of CFS and all of its parts and related factors, the speaker listed a number of different ways that patients are affected psychologically by this illness -- their inability to work and function, their inability to think as they used to, the denial and rejection they feel by professionals and family, etc. Her last item however, caught me by surprise. She talked about the psychological impact on professionals working with CFS. She used an example of the toll taken on the professionals whose own colleagues don't take them seriously. Wow. I had never thought about that.

All in all, I left the conference more dedicated or maybe rededicated to do what we're doing. The need is great. The patients are literally desperate for care and more importantly, desperate for doctors trained in the detail and complication of diagnosing and treating CFS. By the end of the weekend I felt exhausted both mentally and physically. The task at hand is daunting. I met folks doing cutting edge research and clinical work from east to west and around the globe. I met a woman from who used to be with the CDC doing amazing research, I met doctors, psychologists, Ph.Ds, lab scientists and much more. I met and heard about people who had been doing this work for years and years and were ready to retire and wanting to fill the pipeline behind them. And, as if I didn't think she was amazing already, I heard kudos after kudos for Nancy and her work and dedication to this field. It is such a privilege to work with someone you like and enjoy spending time with. Its even better when you realize, yet again, that you get work with a world renown scientist, an amazing doctor and the leader in her field. Now that's cool. Here's Nancy chairing one of the sessions.

There was another presentation this weekend that was really thought provoking. He is the former governor of Oregon. I think his name is Fitzhaber, I'll need to look it up. Anyway, he gave the keynote speech. While I expect it was a canned speech and had little to do with CFS, it was fascinating. It was about the move reform health care costs, etc. His point is that we are completely misdirected. Reforming health care costs shouldn't be the final objective. Health care itself isn't the end goal. We need to reframe the whole debate to make the health of the people the final objective. Health care is the means to the end. As he illustrated this point, it was so simple it seemed ingenious. He talked about childhood intervention to prevent things like diabetes, heart problems, etc. He talked about the fact that there are over 9,000 billing codes but there isn't one code for a cure, for a healthier lifestyle, for health improvement or for any kind of prevention. Kind of wacky, if you stop to think about it. Not sure about the feasibility of his ideas for solutions but it seems like changing our agreed upon objectives would be a good start.

So I'm back at home in Miami after a killer travel day yesterday. Let's just say, as Atlanta goes so goes the entire grid -- and it seems Atlanta went down early in the day yesterday. But there's work to be done. There are people out there who need help and this clinic is one start to that. I'm excited to be a part of it. The medicine is up to Nancy. My part is to get this clinic off the ground. Let the heavy lifting begin.

Postscript... a shot of the mountains surrounding Reno. Not the prettiest city but the mountains are beautiful. And snow capped... for a recent transplant to Miami, it was kinda nice.