Scott Simpson - Counselor for people living w Long COVID, MEcfs, vax injury, Lyme+...
For over 15 years I have counseled people living with chronic illnesses and trained social service, peer workers and counselors, currently through the Gay Counseling Training Hub.
The extra value I bring to counseling is my lived experience with multiple marginalized chronic diseases and navigating a frustrating medical system that is not designed to support people with complex chronic illnesses.
Between HIV and then MEcfs, I have twice experienced the multiple losses that come with being sick and disabled. Loss of health, mobility, career, income, friends, hope....chronic illness takes so much from our lives.
With HIV I also experienced recovery, a second chance at life. I got my health back and from that I rebuilt a better, more meaningful life by helping those in Malawi, Africa get access to the same medications that keep me alive.
By making meaning out of the trauma of HIV illness, I realized that HIV was the best thing to ever happen to me. What I experienced was post traumatic growth.
And in spite of being sick and disabled again, I continue to make meaning out of the trauma of MEcfs.
(Pic: Life before MEcfs: I loved pushing my body hard and racing triathlons)
I share my journey from farm boy to international AIDS advocate to medal winning triathlete to counsellor for people with medically marginalized chronic illnesses.
Because I had access to life saving HIV medications, I had a second chance at life.
Since then I have devoted my personal life and professional career to support people and communities marginalized by the medical system:
Advocate for AIDS medications for Malawians (with NGO Dignitas International)
Counselor and counseling researcher for people living with HIV (with the AIDS Committee of Toronto)
Co-founder of MEcfs advocacy non-profit organization Millions Missing Canada
Patient safety advocate and founding member of Patients for Patient Safety Alliance Canada
Podcast host of Medical Error Interviews
Executive Committee member of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network.
When Health Minister Dr Jane Philpott only offered platitudes, we took our concerns to the next level and interrupted her event to address the audience.
I only stopped speaking to the crowd when Philpott offered to meet with us at her Parliamentary office.
Ultimately, Dr Philpott failed the MEcfs community and she took zero actions to stop the medical harm, fund research, or start access to appropriate and safe treatment.
I was raised on a farm and moved to Toronto and majored in psychology at York University. However, I had no direction or goals, I partied and traveled and worked in dead end jobs.
Then I got sick with HIV and my immune system deteriorated. I started on HIV medications, and the side effects made sick in a qualitatively different way.
Soon new HIV medications became available and my health returned. Having a second chance at life clarifies priorities.
I felt that as someone who had access to life saving medications, it was incumbent upon me to advocate for people who didn't have the same access.
Soon I was working for Dignitas International, a non-governmental medical humanitarian organization founded by two men who had been with Doctors Without Borders.
Our project was in the Zomba District of Malawi in Africa, one of the poorest countries on the planet - and a place where medical care was practically non-existent.
Dignitas worked with community leaders and organizations to implement community-based care and tens of thousands of Malawians got access to life saving HIV medications.
During this time I became passionate about triathlon --- 3 sports in 1, swim, bike, run --- and I would train before and after work. I have completed 3 Ironman triathlons (3.8k swim, 180k bike, 42k run) and represented Canada at 3 age group world triathlon championships, including being the first person living with HIV to compete at the world champs. I loved to push my body to its limits.
Feeling successful with my goals with Dignitas International, I turned my focus to HIV in Canada and worked for the AIDS Committee of Toronto and with Ryerson University (recently re-branded as Toronto Metropolitan University) to research and provide counseling to gay men living with HIV.
From that research, I was co-author of published counseling research papers in PLOSone and Cognitive and Behavioral Practice. (More recently I was co-author on a paper about long COVID and MEcfs in the Journal of Orthopeadic & Sports Physical Therapists.)
Then in 2012, just 10 days before I was to race Ironman Mont Tremblant, I got sicker than I had ever been before. Within a few months I figured out I had MEcfs.
But it would take 5 years to get an official diagnosis --- and by that time I had been exposed to the reality of a medical system that marginalizes - and often traumatizes - people with complex chronic illnesses like MEcfs, fibromyalgia, chronic Lyme+ and multiple chemical sensitivity.
And since the COVID pandemic, we see the same denial, dismissal and gaslighting by those suffering from long COVID and vaccine injury. Unfortunately, medical marginalization is embedded in our medical systems.
Through online counseling for those with chronic illnesses, I am leveraging my professional skills and personal lived experience to work with people who are also living with marginalized chronic illnesses.
To set up a free 15 minute meet and greet in my zoom room, email me at RemediesOnlineCounseling@gmail.com
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