International May 12th Awareness Day

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International May 12th Awareness Day
Blue ribbon.svg
Official nameInternational May 12th Awareness Day
Also calledME/CFS Awareness Day, International Fibromyalgia Awareness Day, Multiple Chemical Sensitivity Awareness Day
Observed byAustralia, Canada, UK, United States and others
Liturgical colorblue, purple, green
TypeInternational
SignificanceAwareness of Chronic Immunological Neurological Diseases including ME/CFS, fibromyalgia, multiple chemical sensitivity, Gulf War syndrome, and others
Date May 12
Next time12 May 2024 (2024-05-12)
Frequencyannual
First time1993
Started byTom Hennessy
Related toSevere ME Day (August 6th), ME/CFS Awareness Month (May), ME/CFS Awareness Week (second week of May)

International May 12th Awareness Day, also known as International ME/CFS Awareness Day is held every year to raise awareness of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), fibromyalgia, multiple chemical sensitivity, Gulf War syndrome and other chronic immunological and neurological diseases (CIND). [1] [2]

Contents

International May 12th Awareness Day aims to:

Illnesses

The main illnesses involved in International May 12th Awareness Day are ME/CFS, fibromyalgia, multiple chemical sensitivity, and Gulf War syndrome. [3]

Other Chronic Immunological and Neurological Diseases also recognized by the event include Addison's, Alzheimer's, autism, celiac, chronic myofascial pain, Crohn's, epilepsy, irritable bowel disease (IBD), Lou Gehrig's (ALS), lupus, Lyme disease, mold/biotoxin illness, multiple sclerosis (MS), orthostatic intolerance (OI), Parkinson's, postural orthostatic tachycardia syndrome (POTS), reflex sympathetic dystrophy syndrome (RSD), and ulcerative colitis. [4]

Events

International May 12th Awareness Day is observed by dying hair blue or dressing up in blue. [5] Since 2016, the #MillionsMissing protests for ME/CFS have taken place every May, with the main event held on May 12. [6] Film screenings are usually held for films about ME/CFS, including Voices from the Shadows, Forgotten Plague, or Unrest. [7] [8] Public landmarks are lit up in color for International May 12th Awareness Day, typically using blue for ME and purple for fibromyalgia. [9] [10]

History

In 2006 a British charity created Severe ME Awareness Day on August 8 as a day of remembrance and understanding for those who died from or with ME. [11] August 8 was chosen because it is the birthday of Sophia Mirza, who was believed to be the first British person to have chronic fatigue syndrome listed as a cause of death. [12]

Related Research Articles

<span class="mw-page-title-main">ME Association</span> UK charitable organization

The ME Association is a UK health charitable organization that provides information, advocacy, and services to persons and families affected by ME/CFS, and raises funds for research into ME/CFS. It has been reported to be one of the two largest UK charities for ME/CFS.

Clouding of consciousness, also called brain fog or mental fog, occurs when a person is slightly less wakeful or aware than normal. They are not as aware of time or their surroundings and find it difficult to pay attention. People describe this subjective sensation as their mind being "foggy".

<span class="mw-page-title-main">History of ME/CFS</span> Review of the topic

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has a long history with an evolution in medical understanding, diagnoses and social perceptions.

Treatment of ME/CFS is variable and uncertain, and the condition is primarily managed rather than cured.

<span class="mw-page-title-main">Controversies related to ME/CFS</span>

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness with a long history of controversy. Some professionals within the medical community do not recognize ME/CFS as a genuine condition, nor is there agreement on its prevalence. There has been much disagreement over the pathophysiology of chronic fatigue syndrome, how it should be diagnosed, and how to treat it.

<span class="mw-page-title-main">Clinical descriptions of ME/CFS</span> Review of the topic

Clinical descriptions of ME/CFS vary. Different groups have produced sets of diagnostic criteria that share many similarities. The biggest differences between criteria are whether post-exertional malaise (PEM) is required, and the number of symptoms needed. The pathology of ME/CFS is unknown, and it can be a difficult condition to diagnose because there is no standard test, many symptoms are non-specific, and because doctors and patients may be unfamiliar with post-exertional malaise. Subgroup analysis suggests that, depending on the applied definition, CFS may represent a variety of conditions rather than a single disease entity.

Graded exercise therapy (GET) is a programme of physical activity that starts very slowly and gradually increases over time, intended as a treatment for chronic fatigue syndrome. Most public health bodies, including the CDC and NICE, consider it ineffective, and its safety is disputed. However, GET still enjoys support among a minority of clinicians and organizations.

David Sheffield Bell is an American physician who has done extensive research on the clinical aspects of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). He has also conducted evaluations and research in pediatric ME/CFS and written numerous articles about the condition.

Daniel Peterson is an American physician in private practice in the state of Nevada, and has been described as a "pioneer" in the treatment of chronic fatigue syndrome (CFS). He graduated from the University of Rochester School of Medicine, Rochester, New York, in 1976 and was an intern and resident at the University of Utah Medical Center from 1976 to 1979. In 1979, he became a diplomate of the American Board of Internal Medicine. He is president of Sierra Internal Medicine of Incline Village, established in 1981.

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) was formed in response to the use of funds by the United States Centers for Disease Control and Prevention in the study of chronic fatigue syndrome (CFS). The CFSAC was charted under the Public Health Service Act of the US and funded by the United States Department of Health and Human Services (HHS). The CFSAC advises the Secretary of Health and Human Services on issues related to its mandate, including issues related to access and care for individuals with CFS, research, public health, clinical care and education regarding CFS. In November, 2008, support for CFSAC activities was changed to the Office on Women's Health, a division of the Office of Public Health and Science. It held it first meeting in 2003.

<span class="mw-page-title-main">Myalgic encephalomyelitis/chronic fatigue syndrome</span> Medical condition

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating long-term medical condition. People with ME/CFS experience lengthy flare-ups of the illness following relatively minor physical or mental activity. This is known as post-exertional malaise (PEM) and is the hallmark symptom of the illness. Other core symptoms are a greatly reduced ability to do tasks that were previously routine, severe fatigue, and sleep disturbances. The baseline fatigue in ME/CFS does not improve much with rest. Orthostatic intolerance, memory and concentration problems, and chronic pain are common. About a quarter of people with ME/CFS are severely affected and unable to leave their bed or home.

Rosamund Vallings is a medical doctor, known as one of the leading authorities on Chronic Fatigue Syndrome (ME/CFS) in New Zealand.

<span class="mw-page-title-main">Post-exertional malaise</span> Worsening of symptoms with activity

Post-exertional malaise (PEM), sometimes referred to as post-exertional symptom exacerbation (PESE), is a worsening of symptoms that occurs after minimal exertion. It is the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and common in long COVID. PEM is often severe enough to be disabling, and is triggered by ordinary activities that healthy people tolerate. Typically, it begins 12–48 hours after the activity that triggers it, and lasts for days, but this is highly variable and may persist much longer. Management of PEM is symptom-based, and patients are recommended to pace their activities to avoid triggering PEM.

Idiopathic chronic fatigue (ICF) or chronic idiopathic fatigue or insufficient/idiopathic fatigue is characterized by unexplained fatigue that lasts at least six consecutive months. which does not meet the criteria for chronic fatigue syndrome. It is widely understood to have a profound effect on the lives of patients who experience it.

Pacing is an activity management technique for managing a long-term health condition or disability, aiming to maximize what a person can do while reducing, or at least controlling, any symptoms that restrict activity. Pacing is commonly used to help manage conditions that cause chronic pain or chronic fatigue.

Peter C. Rowe is a physician and academic. A leading researcher in chronic fatigue syndrome, he is Professor of Pediatrics, Sunshine Natural Wellbeing Foundation Professor of Chronic Fatigue and Related Disorders, and Director of the Children's Center Chronic Fatigue Clinic at Johns Hopkins University School of Medicine.

The Open Medicine Foundation (OMF) is a US-based charity that funds research into the illnesses myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, post-treatment Lyme disease syndrome, and long COVID.

<span class="mw-page-title-main">2-day CPET</span> Medical test for post-exertional malaise

A 2-day CPET is a cardiopulmonary exercise test given on two successive days to measure the effect of post-exertional malaise (PEM) on a patient's ability to exercise. PEM is a cardinal symptom of myalgic encephalomyelitis/chronic fatigue syndrome and is common in long COVID as well.

Andrew Melvin Ramsay (1901–1990) was a British physician, who is known for his research and advocacy on myalgic encephalomyelitis (ME), a chronic disease causing muscle weakness and cognitive dysfunction. Ramsay worked as a consultant at the Royal Free Hospital in London during a mysterious 1955 disease outbreak of what later became known as ME. He studied the disease and similar outbreaks elsewhere. Work by Ramsay showed that although ME seldom caused death, the disease could be highly disabling.

Carmen Scheibenbogen is a German professor, doctor and acting director of the Institute for Medical Immunology of the Charité university hospital in Berlin. She specialises in hematology, oncology and immunology. She leads the Outpatient Clinic for Immunodeficiency and the Fatigue Centre at the Charité hospital. She is one of the few doctors specialised in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in Germany, and also researches Long COVID.

References

  1. "ME/CFS Awareness Day". CDC. June 3, 2020. Retrieved May 19, 2020.
  2. "Calendar - Health Promotion Days". canada.ca. December 19, 2017. Retrieved May 19, 2020.
  3. Rios, Puja (May 11, 2017). "25 Facts for Fibromyalgia Awareness Day". HuffPost. Retrieved May 31, 2020.
  4. "CIND Illnesses | May 12th International Awareness Day". April 29, 2015. Retrieved August 13, 2021.
  5. "May 12 is ME/CFS and Fibromyalgia International Awareness Day". National Institutes of Health (NIH). May 12, 2017. Retrieved May 31, 2020.
  6. Ludlam, Scott (May 11, 2018). "To the #MillionsMissing with ME/CFS, something remarkable is happening | Scott Ludlam". The Guardian. ISSN   0261-3077 . Retrieved May 31, 2020.
  7. Rush, Andy (May 10, 2018). "MP Nicky Morgan to raise awareness of ME illness". loughborough. Retrieved May 31, 2020.
  8. "Award winning documentary film about M.E. to be shown at Penarth Pier Pavilion". Penarth Times. April 22, 2014. Retrieved May 31, 2020.
  9. Lee, Jenny (May 2, 2018). "Hope for ME: Co Down woman's campaign for the thousands living with chronic fatigue syndrome". The Irish News. Retrieved May 29, 2020.
  10. "Griffith Health turns purple and blue". news.griffith.edu.au. May 12, 2014. Retrieved May 31, 2020.
  11. Connolly-Forster, Ethan (May 24, 2020). "Severely ill singer 'overwhelmed' by album support". BBC News. Retrieved May 31, 2020.
  12. Prior, Ryan (August 8, 2018). "Millions suffer from an invisible disease: My ME/CFS story". CNN. Retrieved May 31, 2020.
  13. Floyd, Patricia A.; Mimms, Sandra E.; Yelding, Caroline (June 25, 2007). Personal Health: Perspectives and Lifestyles. Cengage Learning. p. 528. ISBN   978-1-111-79891-8.