The origin of International ME Awareness Day – May 12th
Excerpt from: MAY 12th International Awareness Day
“If a cause and cure are to be found for ME/CFS, FM, MCS and related illnesses in the near future, government and medicine must be made fully aware of their scope and impact. Despite the efforts of a number of dedicated groups and individuals, there are still vast pockets of ignorance and misunderstanding. 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.” [RESCIND. INC. org]
The idea originated with Tom Hennessy, the founder of RESCIND, 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 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 ME/CFS (also known as Chronic Fatigue and Immune Dysfunction Syndrome — CFIDS), Fibromyalgia, Multiple Chemical Sensitivity and Gulf War Syndrome 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 organizations. Due to the mandates of these organizations, the awareness efforts have, for the most part, focussed on only one of the illnesses. From the beginning in 1993, various ME/CFS organizations were behind the idea.
Early support came from a UK group called BRAME (Blue Ribbon Awareness for the awareness of Myalgic Encephalomyelitis). They highlighted the May 12th International Awareness Day at a World Medical Conference on ME/CFS in 1995. This was instrumental in the campaign being adopted internationally for ME/CFS.
Ribbons
R
ibbons are used by many groups as symbols of support or awareness. The ribbon colour used for ME/CFS is blue, for Fibromyalgia it is purple and for MCS it is green. In all cases, the ribbon colour is not unique to the cause but is used for other causes as well.
The use of the blue ribbon for ME goes back to 1995 and BRAME (Blue Ribbon Awareness for the awareness of Myalgic Encephalomyelitis. As previously noted, they highlighted the May 12th International Awareness Day at a World Medical Conference on ME/CFS in 1995 and as a result were instrumental in the ME/CFS Awareness campaign being adopted internationally.
Other groups using May 12
As a bit of trivia, the Awareness Day of May 12th is also shared with Canada Health Day and International Nurses Day (also because of Florence Nightingale’s birthday). It is also shared by Limerick Day to celebrate the birthday of Edward Lear whose Book of Nonsense did much to popularize this form of verse.
BBC iPlayer: Florence Nightingale – Drama about the life of Florence Nightingale, based largely on her own words, which tells the true and unexpected story behind the birth-mother of modern nursing. [available until 7 June 2020]
You have always been there
Now you stand back a little as walks become longer,
We feel like sitting ducks, just waiting to see if COVID-19 will strike our nursing home. If COVID-19 does hit us – how many of us will die? Surely our nurses and carers won’t abandon us, or will they?…
Not knowing what has happened to you.
In early March 2020 I spent two weeks with a virus, which may or may not have been C-19. The route of infection was probably via my brother, who appears to have been infected by a friend returning from a skiing trip to Northern Italy at the end of February. I had all the symptoms but couldn’t be tested, as no-one in the chain of contacts had been formally diagnosed with C-19.
Having Mike with me does ease any feelings of isolation and loneliness but, of course, as many ME sufferers know, feelings of missing out and poignant memories do hit us from time to time, especially as we have always found it so difficult to get others to understand ME and how it affects us. At least Covid-19 sufferers are believed.
Of course, the weather being so lovely over recent weeks has been a bonus as we like to sit on the patio by the back door and listen to the birds, and watch the flowers and trees. We don’t have a lot of contact on a daily basis with others so haven’t found it too onerous to be alone. We have, however, ‘adopted’ two birds – a blackbird and a robin – or rather they have adopted us! They have us well-trained in putting food out for them whenever they want! It’s lovely when the robin sings quite near to us and I find it amazing how loud a song emits from such a little bird!
Edwyn’s ME Lockdown view 
