“Madeline” is a woman who has been suffering with a post viral syndrome for 40 years which includes Severe Myalgic Encephalomyelitis (ME) and fibromyalgia. Madeline lives in British Columbia, Canada and she urgently needs your help. There is a need to seek alternative medical treatments due to the lack of coverage for treatments within the health care system. In Canada, ME alone currently receives only $280,000 a year in federal research money, where illnesses with comparable amounts of diagnosed sufferers receive 10 million dollars. The BC health ministry tells her that without the research to back up the medical treatments she’s been paying for out of pocket, they cannot create billing codes to cover her treatments. The neglected research cannot be an excuse for neglectful care. She needs help now.
Madeline says her current treatments, which includes both intravenous and oral therapy, as well as physiotherapy make her life “less horrifying, and have empirical visible effects,” but B.C.’s Medical Services Plan doesn’t cover most of what she needs. B.C.’s Medical Services Plan should include the services that will allow her to continue to survive, and more importantly achieve a basic quality of life.
Please sign the letter to Minister Dix asking for him to help Madeline by issuing a Stopgap of financial coverage until the government can properly help her and other people like her. Not only will this help Madeline, but it could help anyone with ME in British Columbia and those who are experiencing long COVID, which the NIH’s recent article conservatively estimated to be 10% of all those infected with covid at any level of severity. They all deserve justice, equal access to healthcare, and to live in dignity. Sign the letter today.
For detailed information on Madeline’s story, you can listen to the I AM MADELINE podcast and read published articles in the links below.
- I AM MADELINE PODCAST https://anchor.fm/i-am-madeline .
- https://anchor.fm/i-am-madeline .
- https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/
While the petition for Madeline is now closed and #MEAction is sending the letter to Minister Dix, you can send your own letter with this template:
Minister Dix,
We are writing on behalf of “Madeline.” Madeline has post-viral syndrome and is one of many individuals who have medical conditions that have been abdicated by the BC healthcare sector. Your Ministry and the Ministry of Social Development and Poverty Reduction has met with her and her advocates but sadly no help has come. Due to systemic medical neglect, she has $40,000 of debt, and is surviving on the last of that debt being slightly alleviated by a GoFundMe. She is forced to beg for her life on the internet because there are no categories of coverage or billing codes for any of the components of post viral syndrome. One of her conditions is myalgic encephalomyelitis, a multisystem disease, leaving many with profound fatigue, cognitive and mobility challenges, trouble sleeping and in extreme pain. It can impact nearly all systems in the body, including respiratory, muscular, nervous and immune systems. Eighty-percent of people with ME got the condition after an infection. She developed her condition after mononucleosis.
With the COVID-19 pandemic, the estimates of people developing ME are at 10-12% of people that were infected with the virus. That is an enormous increase. These individuals, along with Madeline will be forced to find any relief in pain and other symptoms because the research and treatments simply are not there. But they all deserve to live a life without pain, without anguish if possible while we urgently fight for a cure.
The pandemic would allow you to issue a stopgap. We ask for:
- Immediate financial support for the Life saving treatments and supports that Madeline, a disabled woman suffering for 40 years with post viral syndrome which includes myalgic encephalomyelitis (ME), fibromyalgia and severe immune deficiency requires.
- A request from your office to Health Canada for significantly more biomechanical research money to be allocated into post viral syndrome diseases so that your ministry has the research it needs to understand and therefore cover the treatments and supports Madeline and patients like her need. This includes bringing myalgic encephalitis research from its current $280,000 per year to at least $10,000,000 so it is commensurate with other diseases with similar numbers of sufferers. Without this funding, and in the face of Long COVID numbers in Canada rising daily, patients will deteriorate and suffer unnecessarily like Madeline has and cost the system dramatically more as they do.
“Madeline” deserves her quality of life, and so do the 100’s of thousands of individuals with ME living in Canada and the thousands more that have Long COVID and are developing ME symptoms. The choice is clear, the choice is yours. You can save Madeline by issuing a stopgap and supporting her treatments. We ask you, beg you to consider our plea.
Sincerely,
Hon. Adrian Dix
Minister of Health
PO Box 9050, Stn Prov Govt
Victoria, BC V8W 9E2
