I AM MADELINE podcast series

[Dolphin]

A performer (actress, singer), leader, mentor, and community volunteer with her hands on a number of projects, Madeline is a joy to know. She loves gardening and The Sound of Music. Her friends describe her as "effervescent." And while she is scheduled to die in July, her illness is treatable.

Madeline's self-advocacy with the B.C. government could be a catalyst for change for so far untold numbers of COVID long-haulers and 150,000 other British Columbians who live with a family of diseases twice as common as Multiple Sclerosis that many doctors don't even believe in.

Listen on https://anchor.fm/i-am-madeline

 

[Dolphin]

Trailer, Season 1
Myalgic Encephalomyelitis does not have to be a deadly disease. As hundreds of thousands of people with so-called "Long Haul COVID-19" are being diagnosed with the illness, people like Madeline have been fighting for treatment for decades. She is facing a ticking clock, as her final few weeks of being able to pay for minimal care, approach. Without treatment she fears a full collapse, she has chosen a medically assisted death. Madeline says she and others with treatable diseases being forced into choosing a medically induced death over a rapid and painful decline into more severe disability.

Thank you to Lee Rosevere for the music in this trailer and episodes.

Ep. 1 - How do you solve a problem?


Madeline has a magnetic personality and she's a prolific volunteer who is well known in her community. She's also scheduled to die in just a few weeks. Madeline lives with a debilitating but treatable disease that is so stigmatized many doctors still don't believe it's real. Now millions more are likely to join her, as some long-haul covid sufferers appear to have the same illness.

Madeline's story is woven into the history of infectious disease, post-viral illnesses, and other chronic diseases that have marginalized and impoverished so many.

Co-produced by Kelvin Gawley and Ash Kelly
Hosted by Ash Kelly

Music by Lee Rosevere
https://leerosevere.bandcamp.com/

Find more information, transcripts, and ways to support us:
https://www.iammadeline.com/

The Commentary: Ash Kell…


Last week, I AM MADELINE host Ash Kelly was a guest on Joseph Planta's podcast, The Commentary. She told Joe about this podcast, why Madeline’s story needs to be heard, and how new ideas might be changing journalism for the better.

Ep. 2 - Hysteria


Madeline’s disease has long been dismissed as “hysteria” a broad and harmful quasi-medical designation that was listed in the American Psychiatric Association’s Diagnostic and statistical manual of mental disorders in 1968 and removed in 1980. Millions of ME sufferers have been dismissed with this so-called diagnosis, which is drawn from a lack of evidence and extreme bias.



Learn more about Joe's show at TheCommentary.ca

Ep. 3 - The elephant in the room


Madeline isn't just fighting a debilitating disease. She's up against a system that legislates her into poverty and denies access to the only treatment that works.

Transcripts: IamMadeline.com

Twitter: @IamMADELINEpod

Donate: Madeline's GoFundMe

Bonus episodes: Patreon

Ep. 4 - Do you jump, or do you bur…
Madeline faces an impossible situation, and she’s not the only one. Poverty is forcing people into assisted death as Canada opens its medically assisted death laws to more people without ensuring the alternatives are in place for vulnerable people.

 

[Dolphin]

From: Bateman Horne Center

I Am Madeline

Dr. Bateman is featured in episode 2 "Hysteria" of this podcast (@IamMADELINEpod) about a Canadian woman scheduled for assisted suicide in July due to the severity of her ME/CFS. The podcast is hosted and coproduced by @AshDKelly, a knowledgeable and skilled journalist using her voice to tell Madeline's story. Dr. Bateman can be heard at 9:13 and 32:20. Click here to access the podcast.

 

[Wyva]

Listen on https://anchor.fm/i-am-madeline

There is also a very long article about her:

‘I Shouldn’t Have to Beg for My Life’

“Many patients are unable to work and so, you know, it interrupts their career, it interrupts their education, and it decreases their finances, and many are on disability and they simply cannot support themselves or get better,” said Robertson. National advocacy programs refer to the “missing millions” of ME/CFS patients, who are absent from their communities because they don’t have the support to carry on.

When Kelly first reported Madeline’s story, she noted the indifference and dismissal of disability justice issues from readers and newsrooms. The podcast is an attempt to break that down.

Kelly and her producer Kelvin Gawley thought the immediacy and connection of a podcast could be a way to invite audiences to imagine they were Madeline. That her bad luck, poor treatment, poverty and lack of support could easily fall upon them after any virus, from cold sores to the novel coronavirus.

“It’s so easy to think of people with disabilities as ‘other,’” said Madeline. “‘Oh, that wouldn’t happen to me, they must have done something wrong.’ But if it happened to me, it could happen to anyone in a minute.”​

(This is a minor thing but personally, I also found it very interesting that she also seems to have that weird, permanent edema that I have.)

https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/

 

[DokaGirl]

Thank you for posting this @Dolphin

If some who are able could forward the article in the post @Wyva did, (just above my post here), to their political representatives, it might help with awareness. Individual's stories are often more easily related to.

We know pwME commit suicide. Now, in Canada, it appears some with ME will qualify for government paid assisted suicide.

The government will cover the costs of assisted suicide for pwME, but provides virtually nothing for disability assistance, medical research and education or treatment.

 

[TiredSam]

I've just started listening to this, and have listened to the first two episodes. It's absolutely excellent and seems to cover a lot of ground well, the history of ME, the history of hysteria. I wasn't sure at the start, also about how the illness and treatments are described, but this is addressed in a balanced way by the start of episode 3 (where I am now). I'm picking up info I didn't know or hadn't paid attention to - I didn't know that McEvedy was just a Phd student when he wrote his paper with his supervisor Beard, and when interviewed later about why he did it, he said he was just looking for the easiest way to get a PhD. Covers the broader topics of racism and misogyny in health well.

 

[chrisb]

I'm picking up info I didn't know or hadn't paid attention to - I didn't know that McEvedy was just a Phd student when he wrote his paper with his supervisor Beard

That was amajor part of it. How many PhD students get their theses published in two parts in the BMJ 's first edition of the new decade (For those who consider a new decade to start in 1970 rather than 1971) having hardly given himself time, by his own time line, of finishing analysing his data, which were published much more obscurely three years later.

 

[Jonathan Edwards]

What is the reference to a treatment that works about?

 

[TiredSam]

She talks about mitochondrial disorder, Lucinda Bateman is interviewed. Madeline's treatments include an intravenous vitamin cocktail and expensive "naturopathic" remedies. I'm suspicious of any claims to know what causes ME, and am very sceptical of naturopathic remedies and supplements etc. However in ep.3 she makes it very clear that the things she's found help her (and it seems credible that they do) very much aren't a recipe for everyone and may cause harm to some, it's just what she's found helps her.

So I do have some reservations, but the good parts are very good (about the bigger picture, history and politics of ME) so on balance I would recommend it. I've only heard the first 2.5 episodes.

Transcripts are available here for those who'd rather read than listen to the podcast series:

https://www.iammadeline.com/transcripts/ed3esgwlsc8qb6b5stogi46jrcdjlr