Request

[Guest guest]

As of this morning, there are 2,039 people subscribed to this www.rheumatic.org

support group which has been active since 1996. About 80 or so of you have

already shared your stories that have been such a help and encouragement to

those seeking an effective therapy for their inflammatory rheumatic disease, but

there are many others out there that need to do so. (The stories have also been

of great encouragement to people already on the therapy as they travel down the

often long road to recovery.)

These diseases affect each of us differently depending upon a number of things,

so our road to recovery is more often than not an individual matter. Your

stories illustrate that fact so well.

But there is another purpose for these stories. Thanks to the years of

persistent endeavors of one of Dr. Brown's grateful patients, the NIH conducted

the MIRA study verifying the effectiveness of antibiotics in treating rheumatoid

arthritis. Other studies followed. There was also a small clinical trial done

by Dr. Trentham using minocycline for scleroderma, but published scientific

studies using AP in treating some of the other rheumatic diseases have not been

done. The powers that be have no interest in funding them.

However, sufficient anecdotal evidence has its place and it cannot be ignored.

Here is a quote from Dr. Brown, the rheumatologist who, along with Dr. Homer

Swift (then the world's leading research scientist on rheumatic fever)

discovered these diseases had an infectious etiology. (This discovery was

published in Science magazine March of 1939.)

" Not all of the information that has developed from fifty years of research and

practice with connective tissue disorders is of a kind that lends itself to

statistical summary. In fact, I often feel that the source that has weighed most

heavily over the long term, in helping me to understand what is involved in

these diseases and in recognizing their patterns, is the kind of data that

scientists characterize as anecdotal. In time, as it repeats itself over and

over again, anecdotal data becomes progressively more substantive and

meaningful. Perhaps more than any other aspects of learning, it has provided the

deepest insights into the process by which connective tissue disease happens to

people. "

We've come a long way since Dr. Brown died, and it's been a source of great

satisfaction these last 19+ years to be part of the process in making this

therapy known and 'watching' so many of you recover, but we still have a long

ways to go. Both www.rheumatic.org and www.roadback.org are volunteer driven.

There is no funding for promoting this therapy so collecting sufficient

anecdotal evidence is important and we're far from achieving that goal.

Would you please consider writing your story for us. If you don't wish to

receive emails from people wanting to question you further, then we can just use

your initials and the city, state or country of origin. And for you whose

stories already appear on www.rheumatic.org, we would appreciate your taking the

time to update them.

Thank you.

Ethel