History of May 12th
This year, 2022, marks the 30th year for International Fibromyalgia Awareness Day.
[excerpt] …Despite the efforts of a number of dedicated groups and individuals, there are still vast pockets of ignorance and misunderstanding about fibromyalgia. To this day, many patients are faced with medical establishments, governments, family and friends that knows very little about this condition and are threats to human health. It is therefore crucial that all those who are affected by this illness, including family, friends, caregivers, etc., make their voices heard all year round, but especially on May 12th of each year. – Thomas M. Hennessy, Jr. (1954-2013), RESCIND, Inc
We hope it will inspire you to do whatever you can to help spread awareness and make May 12th a day to remember.
The idea originated with Tom Hennessy, the founder of RECIND, Inc (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases) Mr. Hennessy was based in the US but understood that it needed to be an International event..
He designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).
May 12 was chosen as it coincided with the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale became chronically ill in her mid-thirties with a fibromyalgia-like (and/or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [ME/CFS]-like) illness. She was often bedridden for the last 50 years of her life. Despite suffering from a debilitating illness, she managed to found the world’s first School of Nursing.
Mr. Hennessy included Myalgic Encephalomyelitis (ME/CFS) (also known as Chronic Fatigue and Immune Dysfunction Syndrome – CFIDS), Fibromyalgia (FM), Multiple Chemical Sensitivity (MCS), Golf War Syndrome/Illness (GWS/GWI), and Chronic Lyme Disease (CLD) under the CIND umbrella. These illnesses, characterized by cognitive problems, chronic muscle and joint pain, extremely poor stamina, and numerous other symptoms, afflict people around the world in alarming numbers.
May 12 efforts have largely been grassroots and undertaken by individuals or individual organization. Due to the mandate of these organizations, the awareness efforts have, for the most part, focused on only one of the illnesses.
Though ME/CFS organizations were behind the idea from the beginning, efforts by Fibromyalgia organizations took a little bit longer. National FM efforts in the United States started in 1997 with the National Fibromyalgia Association (NFA).
In Canada, through the efforts of the then newly founded (June 1993) National FM/FM Action Network, May 12th has been an Awareness Day since 1994. The first year it was only for ME/CFS but from 1995 and onward it has been for both ME/CFS and for FM. On May 12 1996, Parliament declared a National Awareness Day for ME/CFS and FM. In 2006, the Senate proclaimed May 12 to be a National Awareness Day for FM and ME/CFS. This action was taken through the efforts of Senator Dr. Wilbert Keon and of FM-CFS Canada (established Feb. 1996).
In Canada, May 12 was included in Health Canada’s Calendar of Health Promotion Days as “Fibromyalgia and Chronic Fatigue Syndrome National Awareness Day” but is no longer included as of the writing of this article on March 1, 2022.
Canadian efforts have been undertaken by the National ME/FM Action Network, by FM-CFS Canada, by provincial organizations and by local support groups. The following has taken place in the Ontario legislature:
- In 1994, through the efforts of the ME Association of Ontario (MEAO – founded in 1991) May 12th was recognized as the second International public awareness day for ME/CFS.
- In 2003, again through MEAO, another Member’s statement was made on ME/CFS Awareness and blue ribbons were worn my the MPPs.
- In 2005, through the efforts of FM-CFS Canada, May 12 was recognized as a National Awareness day for Fibromyalgia and Chronic Fatigue Syndrome and the first national campaign being undertaken by FM-CFS Canada was also recognized.
- In 2008, a member’s statement, organized by the York region fibromyalgia and CFS wellness support group, was made recognizing Fibromyalgia and ME/CFS.
- In 2009, another awareness statement on Fibromyalgia and ME/CFS was made through the efforts of FM-CFS Canada.
- In 2021,the newly founded Fibromyalgia Association Canada (FAC) joined the fight to advocate for Fibromyalgia for increased awareness, research, education and funding; improve government disability and extended health benefits; and raise the quality of life of Canadians with Fibromyalgia.
Many cities across Canada have proclaimed May 12 ME/CFS and Fibromyalgia Awareness Days and many individual support groups have organized May 12 Awareness activities.