Dan Moricoli was no shrinking violet before he came down with chronic fatigue syndrome (ME/CFS) three years ago. A business owner, internet marketer, motorcycle racer, skiing enthusiast and deep-sea fisherman Dan was, in fact, something of an adrenaline junky. At sixty Dan’s idea of coming down from the stress of work was to race motorcycles. But this disease got him, as it does with everyone, to reassess his priorities. After getting stricken with a severe case of ME/CFS on a fishing trip Dan turned his considerable talents toward an area he knows very well, the internet.
The internet is, of course, an essential component of many ME/CFS patient’s lives; for the most severely ill of us it can be the only means of access to the outside world. But while the internet has been a great tool for exchanging information too often it’s just been about that – exchanging information. In our fervor to get well we don’t really get to know the people we’re communicating with. In truth there haven’t been many good tools available to do that.
With the ME-CFSCommunityCenter Dan Moricoli has built a tool that’s adept at doing just that. Although the ME-CFSCommunityCenter is built on what’s called a ‘social networking’ platform the site’s not just about being ‘social’ or ‘networking’; it’sabout sitting down and getting into the issues that we face every day. The depth of conversation seems qualitatively different from that found on most sites.
After Dan had downed a nice slab of prime rib and before an after dinner cigar (some vestiges of that old life remain!) I was glad to get a chance to talk to Dan at the IACFS/ME conference.
First I asked him how the website came about.
“Because I’m an internet marketing guy and I ran an internet marketing company my main place to look for information when I got sick was the internet. What I saw was first of all that it was hard to find any information and that when I found any information that lot’s of it was repetitious and came from some of the same resources and was rehashed and rehashed. Some of it was patently wrong and it was just hard to find. “
“I thought to myself I’m a marketing guy and I know how the internet works. I decided to put together something that isn’t selling anything and that provides references to all the other places where you can find information on the internet. I knew I could bring my marketing expertise to ensure that anyone could find the site no matter where they look and we could provide practical information to patients are mostly self-doctoring themselves. “
“And we’d provide a chance for the people who know the most about the illness on a practical level to talk to each other. Basically I’m trying to become a portal that people can find easily, get some basic information on the disease and then connect to the appropriate organizations and websites in different countries. I’m frankly amazed at how well it’s gone.”
This is first social networking website devoted solely to ME/CFS. Facebook is one of the most popular social networking sites and there are many chronic fatigue syndrome Facebook sites but it seems like to me that there’s a qualitative difference between the discussion on ME-CFSCommunity and most of those Facebook sites. How is ME-CFSCommunity different from an ME/CFS site on Facebook?
“ I haven’t seen the depth of exchange between patients on Facebook. Facebook is looked at as being a social network, and, of course, technically MECFSCommunity is as well, but in Facebook the emphasis is on being social. That’s not the emphasis on MECFSCommunity. I mean it’s not exactly a place to go and have fun and meet happy people. It’s a place to go when you really want to learn and you really want to get into depth with people and people have really responded to that.”
“A big part of what is going in the community right now is how to live with the illness, how to really have a quality life despite the fact that you’re so sick. Some people have told me that their live’s have taken a totally new twist after visiting the Community.”
I s it because people are opening up to each other or are they learning new things to help them with their illness or is it both?
“I think it’s both. We have people who are very ill who are nonetheless leading high quality lives. The quality of life really does lie in the mind. That’s not the kind of dialog that you get into on Facebook. The dialog on the site has been just extraordinary.”
You don’t really get those kinds of conversations in Forums either. They seem to be more process oriented.
“Forums tend to be very, very issue specific. They’re all about details. I’ve participated in Forums outside of chronic fatigue syndrome and they’re about specifics – “How do you do this?” “How do you do that?” not about understanding in the broad sense. Learning the details is very valuable and we incorporate that kind of discussion in the website but it hasn’t turned out to be the main emphasis. The patients are driving the site and the main emphasis has turned out to be communication; ME/CFS patients are hungry to communicate on a personal level. “
Do you think part of what you’re doing is breaking down the isolation in this disease?
“Absolutely. I saw a beautiful video made by a young woman who’s 22; she got this disease at 18 and I tracked her down and she said you know you’re one of the very first people I’ve ever talked to about this illness. I myself had this disease for two years before I realized that someone I knew had had it. What’s wrong with that picture?”
“We encourage people to get into personal things, stories about themselves, issues that they have, whatever they want as long as they want, they could write a book on the site and then publish it if they wanted to. The traffic to the blogs is phenomenal. I would guess the average blog post is from 500-1000 words. That’s where people get into the really personal stuff. There’s also a huge amount of back channel communication – over the phone, via e-mail – going on. The friendships that develop on the community are just astounding.
What’s next for ME-CFSCommunity?
We’ve been interacting for a couple of hours learning about each other – this is not something you can do in Forums or on the internet. One of the things I’ve been looking into very seriously is putting video on the internet so that we can see each other and talk and have prolonged conversations. That’s going to be astounding. I think we’re going to have a video in the next six months. Money, however, is a big issue all across the community and it is for ME-CFSCommunity as well. I have some ideas about that but we’ll see…
Dan has also created a companion site called CFSKnowledgeCenter. The Community center features a column by Dr. Hyman and is planning regular events. Next up is an online event featuring chronic fatigue syndrome (ME/CFS) experts.
Next up – a talk with Ashop Gupta, the creator of the Amygdala Retraining Technique.