Introduction - May 12 Action Information

The MAY 12 Event

“Riding home from the 1992 International ME/CFS Conference held in Albany, New York, I looked out of the window and caught a glimpse of the New York State Capitol building. The surrounding countryside was shimmering with brilliant autumnal hues ranging from vermilion to burnt sienna. The Capitol gleamed like a shining beacon in the afternoon sun, visible for all to see.”

“Suddenly, a light bulb went off!”

With that flash, patient Tom Hennessy gave birth to an idea which has galvanized the CIND community. The idea, later to be known as “MAY 12 International Awareness Day,” went on to be a smashing success with patients, their families, and their friends speaking out each year on May 12th and demanding that government respond to these devastating illnesses.

These illnesses, characterized by cognitive problems, chronic muscle and joint pain, extremely poor stamina, and numerous other symptoms, have been afflicting people around the world in alarming numbers. Throughout the 1980’s, patients were generally dismissed by the medical profession as suffering from psychosomatic illness. However, as the illnesses began to spread throughout the population, some physicians began to see that these were indeed very serious illnesses. Many victims were left in such a feeble state that they were too weak to even feed or bathe themselves. Sadly, the illnesses continue to spread unchecked with only a minimal response thus far from government. In order to help intensify the response, the MAY 12 International Awareness Day was created.

It is important to note that the May 12th date was chosen to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing, CIND-like illness in her mid-thirties and spent the last 50 years of her life virtually bedridden. Despite her illness, she managed to found the first ever School of Nursing. It is fitting that this determined woman of the late 19th century now shines as a ray of inspiration and hope to victims of CIND in the late 20th century.

If a cause and cure are to be found for CIND in the near future, the government, the medical establishment, and the public at large must be made fully aware of the scope of these illnesses. Despite the efforts of a number of dedicated groups and individuals, there are still vast pockets of ignorance and misunderstanding about CIND. To this day, many patients run directly into a medical establishment that, in general, knows very little about these serious threats to human health. It is therefore crucial that all those affected by the illnesses make their voices heard, especially on May 12th of each year.

In the sections that follow, you will be presented with the names and addresses of various officials who should be contacted for the MAY 12 event, along with sample letters to those officials. You will also find a listing of prominent groups from around the world, many of whom will be sponsoring events in conjunction with Awareness Day. Lastly, you will find more detailed information on the illnesses themselves and a short biography on Florence Nightingale.

Whether you are active in May 12th events sponsored by various organizations, or use this information to be active on your own, the important thing is that you act. Together, we will turn the spotlight on CIND!