I AM MADELINE podcast series

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

 

From: Bateman Horne Center

 

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/

 

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.

 

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.

 

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.

 

What is the reference to a treatment that works about?

 

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