Wendy Boutilier

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Wendy Boutilier, a Canadian Artist & Eco Anthropologist developed ME in 2008, following strep throat, sepsis and cervical necrotising fasciitis caused by a very severe infection of streptococcus pyogenes necrotizing fasciitis sometimes called “flesh-eating bacteria."[1] Latent virus testing showed the presence of two types of DENV (Dengue fever) flaviviridae serotypes, Rubeola virus, varicella-zoster virus. She continues to suffer from moderate to severe ME leaving her disabled and 75% housebound. She holds a Batchelor of Arts degree in Fine Art, Art History, Anthropology. From 1990, she worked in the Caribbean, Central and South America liaising between Gov’t & Corporate Investors in Tourism until she became ill in Barbados in 2008 and returned to Canada in 2011.[2] After four yrs of online study, she successfully defended and was awarded her Masters highlighting an Anthropology Thesis about the hidden ME Community and the lives that have been stalled for decades due to mismanagement of government and irresponsible medical neglect.

Advocacy work[edit | edit source]

Wendy guest blogged for Just ME on 12 May 2014 where she discussed Sophia Mirza's death, the image problem cause by the trivializing disease name and outdated psychological explanations of its etiology.[3] She highlighted Dr. Kenny de Meirleir's work and outlined biomedical abnormalities caused by the illness. She admins on several ME Support facebook pages and is an active ME advocate.[4]

Boutilier created art projects called Tears for ME, Blue Roses, Elephant in the Room to honour those who have lost their lives to ME. She grants permission for all awareness graphics to be used to promote the suffering of ME, specifically on social media for May 12th Awareness Events, sponsored by the May12th.org.[5] Advocates for Myalgic Encephalomyelitis, raising awareness for the 25% ME Group charity and Severe ME Awareness Day.

In 2016, she wrote to the Canadian Federal Minister of Health after the Canadian Institute of Health Research denied a grant for ME based on a psychological approach to the illness and stating that their denial cited erroneous and outdated research. In her letter she urged the ministry to adopt the International Consensus Criteria 2011 definition and diagnostic code for ME.[2]

She has also been published in the Canadian Medical Association Journal with respect to treatment of ME.[citation needed] She urged the medical profession to remove recommendations for GET and CBT treatments since the PACE trial research study was found to lack good science. Boutilier has also been published on the Stonebird website, writing about the UK on the cost of ME.[citation needed]

Global Advocates for Myalgic Encephalomyelitis[edit | edit source]

Together with Guido den Broeder and John Gabor, Boutilier is a founder of Global Advocates for Myalgic Encephalomyelitis (GAME), an international group of advocates dedicated to education and information about myalgic encephalomyelitis.

Learn more[edit | edit source]

Online presence[edit | edit source]

References[edit | edit source]

  1. "Wendy Boutilier". Sepsis Alliance. Retrieved April 27, 2021.
  2. 2.02.1 Boutilier, Wendy. "Artz Studios". Facebook. Retrieved October 10, 2019.
  3. Burch, Sally (May 12, 2014). "Just ME: Guest Post from Wendy Boutilier - ME Awareness". Just ME. Retrieved April 27, 2021.
  4. Burch, Sally (May 12, 2014). "Just ME: Guest Post from Wendy Boutilier - ME Awareness". Just ME. Retrieved October 10, 2019.
  5. "May 12th Awareness Events 2015". MEadvocacy.org. Retrieved October 10, 2019.

etiology The cause of origin, especially of a disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.