Banner
Home
Search
Home About Us President's Letters President's Message, March 2009
President's Message, March 2009 PDF Print E-mail
Our organization, the Massachusetts CFIDS/ME & FM Association, has been active for 25 years. When we began helping patients with a seemingly new mysterious illness that nevertheless had a common set of symptoms, there was very limited scientific information. In retrospect, it was likely that several small epidemics had occurred in the 1980's not only in Massachusetts but elsewhere as well—one of which, in Incline Village and the Lake Tahoe area in Nevada, attracted the attention of the Centers for Disease Control & Prevention (CDC). Here in Massachusetts in 1983 volunteers began to provide a variety of forms of help, from an initial contact help line, to support groups, physician referral, disability information and advice, and education for health professionals—all of which continue to this day. As a membership organization evolved, we also sponsored lectures by researchers and clinicians. A crucial need then was for information. In 1991 we published a Primer for Physicians written by health professionals that was distributed throughout Massachusetts and beyond.

Since the very beginning of our incorporated organization, as new information became available, we published a popular, appreciated and trusted publication, The UPDATE, which was distributed to a very wide geographic area. Several years ago, facing financial constraints and exhaustion of those extremely hardworking volunteers who produced The UPDATE, we had to abandon publication and opted to develop a new website.

That website was established with a minimum of funds and a maximum of effort. It served us well for many years but it became clear some time ago that the technology it depended on was outmoded, making revisions and entering new information very difficult. In mid-2007, as part of a planned reorganization of the Massachusetts CFIDS/ME & FM Association, the Board started to undertake a complete revision of the site.

For over a year, a team of five individuals, all senior Board members with other responsibilities, plus a very dedicated volunteer and a paid website design professional, have put in countless hours developing a revised website.  We have been extremely fortunate in having our Website Committee led and staffed by those same Board members who had produced The UPDATE.

We are very pleased to launch this new website. It is a combination of mostly new, but also some timeless useful information.

The worlds of CFS/ME and fibromyalgia have changed dramatically in recent years. One change is that there are now many sources of information. The Website Committee has included many links to sites where good information is available from both health professionals and from other organizations-information that we don't need to repeat. They have also included articles about diagnosis, treatment, and disability written by some senior lay members of our organization as information from patients to other patients. These latter articles are meant to serve as adjuncts to the professional information cited, not as the key medical information themselves.

The News and Events section of our website is intended to cover items of a general nature as well as information specific to Massachusetts and the Massachusetts CFIDS/ME & FM Association As we intend to develop a membership component, over the next six months the News and Events section will serve as a major communication channel. Other sections have been updated and some new sections added. Navigation of the site has been much improved.

We hope you find this revised website helpful. We welcome your comments and suggestions.

Alan Gurwitt,
President, Massachusetts CFIDS/ME & FM Association

 
parkinDESIGN logo