You can Still Help Madeline!

“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.  

 

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:

  1. 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.
  2. 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

Facebook
Twitter
WhatsApp
Email

Latest News

Graphic of yellow canary over black and white photo of a coal mine. Text reads "Canary Corps"

CANARY CORPS – Alison’s Story

Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a community presentation introducing the Canary Corps program? Ahead of Wednesday’s event we wanted to share with you Alison’s story. Alison Sbrana will be co-presenting this event, and much of the design of Canary Corps has been

Read More »
A rectangle image with a blueish/purple background. The words, "A Year of Exciting Medical Education Achievements" is in white font on the left hand side with the #MEAction logo underneath. On the righthand side is an image of Jaime Seltzer with a step and repeat and poster at the SDMI conference.

A Year of Exciting Medical Education Achievements

A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model

Read More »
a light orange rectangle with a burnt orange outline. in the box, there are orange flag garlands hanging in both top corners with orange confetti in the middle and at the top. in the bottom corners fall leaves. in the middle of the box the word, "OUR BOLDEST THANKS" in burnt orange. the #MEAction logo at the bottom.

#MEAction Shares Our Thanks for Your BOLD ACTIONS

During this time of thankfulness and gratitude, #MEAction staff wants to share what BOLD ACTIONS we are thankful our volunteers and community have taken throughout the year. We thought we could reflect together on all that we have accomplished this year and how every single one of us is important in this powerful community. A

Read More »