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Who Am i? I definitely will tell you more below as well as some media links about my situation for your verification as well as podcast and YouTube links so you know it's really me.
But first what's the what with this GoFundMe?
We set up this GoFundMe to go with the petition https://bit.ly/Marcia_petition (more information on me there as well especially in the additional resources which shows a three-page document of all my community work over the past 30 years)so people new to my story wouldn't be confused by the money seen in the original GoFundMe. That money has been used up month by month on Just barely health scraping by (But often sailing off a cliff) minimal supports that are about $1500 per month
We set a $500,000 goal, keeping in mind that that could be achieved if $500,000 people donated $5, with the hopes that something like that might allow me to do even just barely scraping by on minimal supports off the interest cuz month to month running out of GoFundMe money is creating worrisome levels of stress and despair. I just did a bunch of podcast episodes called squish squash to document some of that difficulty in case I don't survive. The podcast in general is that because I don't know how else to breach the whole disabled people on assistance are just sitting around eating bonbons and watching TV bias. Because nothing could be farther from the truth then this misconception The people like me are having some sort of holiday. Rather than my experience which is like slowly And then accelerating What I imagine it would be like to be murdered with a cheese grater over the course of decades. https://open.spotify.com/show/0oNLwzI1qZvvZ51bau1aNi
But for full proper supports That would stabilize me and roll back some of my deterioration, And in so doing allowing me to focus solely on the ME/LONG VIRAL/DISABILITY advocacy and my health maintenance, I would need something on a yearly basis in between what kidney dialysis in Canada is approx $70,000 a year and chemotherapy $100,000.
Of course I never needed to deteriorate into needing so many supports. It always costs the system catastrophically more to allow a disabled person to deteriorate. Someone replied to a post on Twitter talking about they hope I would get the supports I need *without straining the system*. But a big part of the advocacy needs to be a stepping away from this disability and economic bias. If you only look at one line item in a spreadsheet and not the pluses and minuses that make up the totality, that's not logic or reality. But unfortunately it's driving current provincial and federal policy, off a cliff. And there is no way to do a human rights tribunal nor supreme Court charter challenge federally or provincially. I'm starting the process of a BC human rights tribunal case to show how it fails, how disability bias has inserted itself directly into legislation. But that will take 3 years and upwards to see through. And I just don't have that time
This part was written by a friend Because my tired brain couldn't
That's why we hope people will sign the petition so others don't fall down the rabbit hole of lack of disease and disability supports that Marcia has https://bit.ly/Marcia_petition
Original GoFundMe where you can see the history of what she's been through and how much money she's been trying to survive on minimal supports for month to month for years https://gofund.me/cff39173 * . Also we have a breakdown of medical needs. While things have altered a bit with the ebb and flow of my health situation due to how much I'm trying to stretch GoFundMe money that's been keeping me alive, it's the basic gist of monies needed
Marcia Doherty (known publicly online as Madeline) is a 45-year-long survivor of Myalgic Encephalomyelitis (ME), originally triggered by an Epstein-Barr infection. ME is a severe, chronic illness the CDC likens in severity and impact to MS, AIDS and COPD.
Despite decades of advocacy, British Columbia’s systemic neglect of people with ME has left Marcia without the necessary supports to avoid health deterioration. Due to lack of a host of medical/disability supports, Marcia has gone approx $45,000 into medical debt. She now relies on crowdfunding to survive.
Marcia's health has deteriorated to the point where is approved for Medical Assistance in Dying (MAID). But she wants to live.
Based on her decades of experience facing roadblocks to the care she needs, Marcia has launched a petition, calling for better supports for ME and all people on Persons with Disability (PWD) assistance in British Columbia.
SIGN THE PETITION HERE: https://bit.ly/Marcia_petition
Here is a UK Canary article that just came out. I'm sharing the Twitter link because if you want to share it in Canada then you cannot share it as the direct news link on Facebook and Instagram but you can share a Twitter post that has the news article link https://x.com/TheCanaryUK/status/1870202754200940686?t=kEDZ1y5rkulir29j8zdlEg&s=19
Please consider donating to enable Marcia to continue to cover her treatments and live her life.
● A taste of some of Marcia's community work prior to her health deterioration" https://youtu.be/DBxf-osYOYI?si=eaXf4yx-shK-5kW9
● 3 page doc accounting of 30 years of volunteering / community building with links to videos that I've done around it and there's some pictures. https://drive.google.com/file/d/1U2DqJmVmZis4rs5dNrvpCvwuGBcwik32/view?usp=sharing
● 37.9% of people get Long Covid after three or more infections https://www150.statcan.gc.ca/n1/pub/75-006-x/2023001/article/00015-eng.htm
● original Gofundme: https://gofund.me/cff39173 (includes all articles in updates and intro for verification of what's been happening in the past few years)
● Podcast: first flight episodes done by journalists next eight episodes my 45-year testimony and then updates https://anchor.fm/i-am-madeline
● Most recent article, written by Richochet Media:
● Disability Alliance BC article:
MORE INFO on myalgic encephalomyelitis/longviral/longcovid :
● Mayo Clinic: [Sophie likes this one best!]
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
● Bateman Horne PDF:
● UK NICE COMM(NHS) Myalgic Encephalomyelitis Guidelines-UPDATED:
Quebec study finds 37percent rate of long covid (which contains the element of myalgic encephalomyelitis)at 3rd covid infection https://www.inspq.qc.ca/publications/3510
Death of MAEVE BOOTHBY(also myalgic encephalomyelitis) in the UK by starvation when doctors wouldn't do feeding tubes https://www.theguardian.com/commentisfree/2024/oct/18/maeve-bothby-oneill-me-chronic-fatigue-syndrome
CDC, ME/CFS- Resources for Healthcare Providers
https://www.cdc.gov/me-cfs/hcp/toolkit/healthcare-provider-resources.html & https://www.cdc.gov/me-cfs/management/index.html
Additional related information
The Atlantic; Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases
https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/
The Atlantic: One of Long COVID’s Worst Symptoms Is Also Its Most Misunderstood https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/
Forbes: Long Covid Has Over 200 Symptoms And Leaves 1 In 5 Unable To Work, Study Finds https://www.forbes.com/sites/roberthart/2021/07/15/long-covid-has-over-200-symptoms-and-leaves-1-in-5-unable-to-work-study-finds/?sh=1f11766e5eb2
Scientific American: A Tsunami of Disability Is Coming as a Result of ‘Long COVID’
https://www.scientificamerican.com/article/a-tsunami-of-disability-is-coming-as-a-result-of-lsquo-long-covid-rsquo/
WHO-ME-IC Primer posted(PDF) on ME international website https://me-international.org/en/primerinfo-sheets/
Semmelweis reflex - Wikipedia https://en.m.wikipedia.org/wiki/Semmelweis_reflex
Gender bias in research https://pubmed.ncbi.nlm.nih.gov/33232627/
Sex and gender gaps in medicine and the androcentric history of medical research https://onlinelibrary.wiley.com/doi/full/10.1111/1753-6405.13139
Percentage of doctors who understand me https://doctorswith.me/poor-knowledge-of-me-cfs-among-doctors-puts-patients-at-risk-of-harm/
Costs two to three times more to be disabled https://pubmed.ncbi.nlm.nih.gov/31026771/ https://pubmed.ncbi.nlm.nih.gov/31026771/
Death of Stephanie Levois who starved to 56 lb when doctors wouldn't do a feeding tube and then requested maid (Lyme disease also gender biased in tests, research and treatments) https://globalnews.ca/news/10529000/lyme-disease-assisted-death-canada/
CTV NEW: 'Easier to let go' without support: B.C. woman approved for medically assisted death speaks out https://bc.ctvnews.ca/easier-to-let-go-without-support-b-c-woman-approved-for-medically-assisted-death-speaks-out-1.5937496?s=09
CTV NEWS: Maid chemical sensitivities application due to lack of health safe housing https://toronto.ctvnews.ca/toronto-woman-in-final-stages-of-maid-application-after-nearly-a-decade-long-search-for-housing-1.6145487