Updated: Aug 17, 2019
In June 2019, ME patients, family members and caregivers were encouraged to contribute to an act of advocacy to gain the attention of the BC Select Standing Committee on Finance and Government Services. This is a Parliamentary subcommittee that hosts public consultations each year prior to setting the following year’s budget inviting British Columbians to share their ideas and priorities.
We participated and we were heard.
On Wednesday, August 7th, the Select Standing Committee released their report summarizing all presentations, written/audio/video submissions, and survey responses. The full report is available here. A summary of the recognition of ME within the report is described below.
Within the Health Care Section introduction, ME was explicitly stated:
“Health care was the second most common theme in response to question one in the online survey (see Appendix A), with responses referencing a need to increase and expand mental health and addiction supports, improve access and reduce wait times, and improve support for and awareness of myalgic encephalomyelitis.”
(p.38, Report on the Budget 2020 Consultation).
Further in Health Care, a subsection of Complex and Chronic Diseases discussed ME first, including a definition:
“The Committee heard from many organizations and individuals about supports and services for a range of chronic and complex diseases. A number of British Columbians advocated for improved support, education and research for individuals with myalgic encephalomyelitis (ME). Also known as chronic fatigue syndrome, ME symptoms include a severe onset of disabling, persistent fatigue, changes in sleep patterns, and cognitive impairments. Submissions and presentations indicated that awareness and understanding of ME is lacking within the health care system, and appropriate supports are therefore not provided.”
(p.38, Report on the Budget 2020 Consultation)
ME was expressly acknowledged in Appendix A, where each online survey question responses where summarized:
“Health care was identified as the second priority by respondents with a focus on increasing and expanding mental health and addictions supports. Other respondents emphasized providing more funding and investing in health human resources to improve access and reduce wait times. Several respondents also recommended support for and awareness of myalgic encephalomyelitis.” (p.93)
Lastly, support for the Complex Chronic Diseases Program at the BC Women’s was expressed in a formal recommendation from the Committee to the Legislative Assembly that the provincial government:
“Provide appropriate supports and services for British Columbians living with chronic and complex diseases, such as diabetes, arthritis, inflammatory bowel disease, Parkinson’s disease, brain injury, dementia and cystic fibrosis, including increasing funding for the Complex Chronic Disease Program at BC Women’s Hospital.”
(Recommendation #38, pg. 46, Report on the Budget 2020 Consultation).
Together, these specific inclusions of ME within the Report represent increased exposure and awareness to improve the support for ME patients in BC. We would like to thank those that prepared various types of submissions to the Committee, in particular Lana LeBlanc and Sheila Murland. We also thank the Committee for recognizing and acknowledging the need for awareness and support for ME in BC.
Transcripts and audio files for the two in person presentations are archived on the links below:
Lana LeBlanc, Victoria June 10, 2019: https://www.leg.bc.ca/.../20190610am-Finance-Colwood-Blues
Sheila & Brian Murland, Quesnel, June 19, 2019: https://www.leg.bc.ca/.../20190619pm-Finance-Quesnel-Blues