Works of fiction where characters have ME/CFS

Shadrach Loom said:
Henry Woodhouse, the father in Emma, maybe?
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If anyone in ‘Emma’ had ME I would have picked Mrs Churchill, though she is never met in person. She was considered a hypochondriac by the characters we do meet and judged much more negatively than Mr Woodhouse, but she presents with actual symptoms and her death suggests an underlying medical condition. Obviously Mrs Churchill is selfish and probably manipulative, but these qualities do not preclude an actual medical condition.
 
JemPD said:
So i dont think it helps anyone/anything, for those of us who do understand what ME is like, & therefore how far from the reality of ME such portrayals are, to suggest that they had ME.
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Yes, that’s all fair. I was trying to think of characters who were bed bound or lacking energy, but probably a fruitless exercise. As you say, one ends up with hypochondriacs.
 
Peter Trewhitt said:
If anyone in ‘Emma’ had ME I would have picked Mrs Churchill, though she is never met in person. She was considered a hypochondriac by the characters we do meet and judged much more negatively than Mr Woodhouse, but she presents with actual symptoms and her death suggests an underlying medical condition. Obviously Mrs Churchill is selfish and probably manipulative, but these qualities do not preclude an actual medical condition.
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This was the nineteenth century, though, even manipulative illness fabulators could suddenly succumb to something real, especially to serve an ill writer’s instinct for irony.
 
Caderousse's wife La Carconte in The Count of Monte Cristo, possibly. She is pale, thin and sickly, and spends most of her time in her room either stretched out in an armchair or leaning against her bed. (Leaning against?? That sounds painful - possibly a translation issue)
 
Tom Kindlon said:
“Meet me on the Buddy Bench”
I saw this featured in the latest ME Association magazine.

It's a 2022 novel written by somebody with ME where one of the main characters has ME themselves.

Author interview
https://portobellobookblog.com/2022...e-on-the-buddy-bench-choclituk-hannahpearl_1/
though this doesn't give as much information as the ME Association magazine piece which I can't find online

10 reviews
https://www.goodreads.com/book/show/60434727-meet-me-on-the-buddy-bench

I haven't read it myself
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Here are a few books that have not yet been mentioned:

* Patient 002 by Floyd Skloot

Loosely inspired by the early Ampligen trials. I enjoyed reading it.
Review: https://www.publishersweekly.com/978-0-9792091-6-1

* The Matzah Ball by Jean Meltzer

Romantic comedy. Not usually a genre that I read but it was okay.
Review: https://www.kirkusreviews.com/book-reviews/jean-meltzer/the-matzah-ball/


This book is not fiction, but it's so well written I thought I'd add it here:

* The Sound of a Wild Snail Eating by Elisabeth Tova Bailey

Author website: https://www.elisabethtovabailey.net/
 
ME Association
·
WIZARD NEWS! SALLY WINS BOOK BLOGGERS AWARD FOR THE FIRST OF HER 'TOBY' BOOKS

A children’s wild wizard book featuring a 12-year-old boy, who is a young carer looking after his mother who has M.E, has won the international Book Bloggers Novel of the Year Award for 2022.

It’s all the more remarkable because the author, Sally Doherty, first found a publisher for 'Toby and the Silver Blood Witches' but then had to go it alone when the publisher closed. Sally published the book herself 18 months ago.

https://meassociation.org.uk/2023/0...k-bloggers-award-for-first-of-her-toby-books/
 
"Bird Hits Glass": Fictional book by Beate Triantafilidis where the main character has #MyalgicEncephalomyelitis

Description:
Working at a high-powered consultancy in London, Grace relishes having an outlet for her relentless ambition. When her young body collapses in invisible pains, she becomes desperate for answers - but the doctors can't find anything wrong.

As time stretches out and her body still confines her to bed, she relies on social media and visits from her adventurous boyfriend Matt and fiercely competitive best friend Jas to connect her to the outside world. But as persistent physical pains continue to engulf her, her relationships start to fray.

Feeling increasingly lonely, Grace becomes even more desperate to heal. When she discovers a chronically ill social media influencer, she's buoyed by hope that recovery is possible, while beginning to question her assumptions about relationships, love and what it means to live a full life.

15 reviews: https://www.goodreads.com/en/book/show/61117733
12 reviews: Amazon product ASIN 1803131624
I haven't read it myself

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I saw this post on Tumblr. Despite the tags that the poster uses my guess is that the character doesn't have ME/CFS. But other people have posted chronic illness characters in this thread so I thought I might also.
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The Strange Case of Starship Iris (@iriscasefiles) is the most wonderful podcast. I have so many good things to say about it. Severe chronic illness means I have limited energy, though.

So, particularly of interest to readers of my blog, I will just mention the podcast's sensitive portrayal of chronic illness (both physical and mental). This happens across the 2nd season and is extremely moving.

Thank you so much, Jessica Best + cast + production team! I didn't expect a podcast that delighted and charmed me so much would *also* make me feel seen as a chronically ill person with very limited mobility. Standing is A Lot.

#the strange case of starship iris#starship iris#Jessica best#chronic illness#myalgic encephalomyelitis#chronic fatigue syndrome#inflammatory bowel disease#me/cfs#ibd#disability#podcast recommendations#disability representation#Chronic illness representation

https://www.tumblr.com/thatchronicf...e-of-starship-iris-iriscasefiles?source=share
 
Just released:

The Final episode of M.E, Myself and I

Episode 6: Love



This is a low-budget dramatisation of the (fictional) life of a young person with ME
 
The author, who has ME/CFS, sent me the following link to highlight his new book where one of the main characters has ME/CFS and fibromyalgia.
I don't know anything more.
A few reviews are up on the link given in the tweet.

THE EMBLETON MURDERS After ten years of working at Embleton University, Professor Robbie Mustoe is ordered to take a sabbatical by senior management. Within days of his sabbatical starting, two of his trusted lecturing staff are suspended and eventually leave the university under a veil of secrecy. Months later, two staff members involved in the removal of his trusted colleagues from the university, die in separate incidents. Professor Mustoe suspects foul play and turns to his friend since school days, DCI Parrish. DCI Parrish had to take early retirement from the Metropolitan Police on health grounds. Diagnosed with ME/CFS and fibromyalgia, symptoms including chronic fatigue and pain prevented him doing his job properly. But it was brain fog; poor concentration, memory problems, difficulty speaking and counting, that ended his career. After talking with Robbie, Parrish begins researching the mysterious deaths. He feels the excitement of being involved in a case again. But is it a case? It is when a third member of the university goes missing. A DCI PARRISH Crime Thriller by Bear Lawrence Available exclusively on Amazon

https://twitter.com/user/status/1755023789685866686
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Edited to add: I did try to add the Amazon link in the post here but it wouldn't load
 
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ME/CFS Alert, Episode 137: Interview with Canadian Author Nora Gold

ME/CFS Alert
17 Mar 2024
Nora Gold has turned her awesome talent as a writer to a fictional account of a woman afflicted with Myalgic Encephalomyelitis. Her book, “In Sickness and In Health,” is an engaging, exquisitely crafted story — one informed by Nora's own struggle with the disease. When you meet Nora in Llewellyn King’s interview, you will immediately find her compelling as a Canadian woman of great accomplishment in academe, and as a prize-winning writer who has been spared none of the suffering of ME. “For me, the high point of this interview is Nora reading from her book. It is powerful stuff,” King says.

https://twitter.com/user/status/1769545171002155299
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Really enjoyed watching this conversation . Nora Gold is an interesting character; an academic and a writer.

She has had ME for 40 years and has written this novella about someone with ME. ( with another novella in the same book). She has spent spells in bed when most affected but also achieved a doctorate and published a few books. She has set up community projects relating to Judaism.

I could relate to the strategies she has used as an ME patient. She described how we often hide our illness from our friends.

Have exhausted my energy but can recommend watching this. Am thinking about whether to buy the book.
 
My daughter's debut novel launched in April and totally coincidentally;) the main character's mother has ME.

Rabbit Rabbit Rabbit by Nadine Sander-Green is a coming of age novel set in an isolated northern Canadian community. The main character, Millicent, is a new and naive political reporter at a dying daily newspaper in Whitehorse, Yukon. Although the mother has a minor role in the novel Nadine took care to include vivid descriptions of life with severe ME and of how her mother's illness affected Millicent's childhood.

If you're interested (and able) to read it Rabbit Rabbit Rabbit: A Novel is available in paperback from independent book sellers, online including Amazon in Canada, US, UK, many countries in Europe, Australia, NZ and elsewhere. The ebook is available in Kobo & Kindle through Amazon or wherever you get your ebooks. The publisher hopes to release an audio version in the future but there's no timeline for this yet.

Lastly, if you do read the novel you might want keep in mind that it is a work of fiction - although the mother has ME she's not me!
 
This was sent to me by a family member. "King of Sloth" by Ana Huang. It's fluff but has a relevant passage (which I'll get to circuitously). For the avoidance of doubt, the title itself does not relate to ME/CFS, the relevant antagonist being described thusly —

Charming, easygoing, and rich beyond belief, Xavier Castillo has the world at his fingertips.

He also has no interest in taking over his family’s empire (much to his father’s chagrin), but that hasn’t stopped women from throwing themselves at him…unless the woman in question is his publicist.

Nothing brings him more joy than riling her up, but when a tragedy forces them closer than ever, he must grapple with the uncertainty of his future—and the realization that the only person immune to his charms is the only one he truly wants.
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The protagonist is named — and I kid you not — Sloane Kensington. (Oh behave!!)

Cool, intelligent, and ambitious, Sloane Kensington is a high-powered publicist who’s used to dealing with difficult clients.

However, none infuriate—or tempt—her more than a certain billionaire heir, with his stupid dimples and laid-back attitude.

She may be forced to work with him, but she’ll never fall for him…no matter how fast he makes her heart beat or how thoughtful he is beneath his party persona.

He’s her client, and that’s all he’ll ever be. Right?
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Sloane's 9yo half sister has ME/CFS and Rhea is her nanny. This book has a better handle on the disease than many scientific papers and media articles —

Two years ago, Pen was diagnosed with chronic fatigue syndrome, or CFS, after an unusually lengthy bout of mono. Characterized by extreme fatigue, sleep issues, and joint and muscle pain, among other things, CFS had no cure or approved treatment. It was difficult to determine the cause, though her doctors suspected it was triggered by a change in the way her immune system responded to illness, and the best we could do was manage the symptoms.

Despite having no FDA-approved treatments, CFS had spawned a thousand and one snake oil salesmen who promised a "cure" via special vitamins, antiretrovirals, and other "miracle" medications. Pen's parents had flushed a ton of money down the drain trying to find something that worked. Nothing ever did, so eventually, they gave up and simply shoved her at home where they didn't have to think about her.

Luckily, Pen had mild CFS, so she could carry out everyday activities better than those with more severe cases, but she couldn't play sports like she wanted or attend school like her peers. On bad days, it was difficult for her to walk. She was currently home-schooled, and Rhea stayed with her pretty much twenty-four seven in case she crashed.
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Copied from New Zealand thread:

New novel by recognised NZ author, David Coventry, pwME, about his experience with ME.
https://teherengawakapress.co.nz/performance/

Performance is a self-portrait like no other. David Coventry takes us into his experience of ME, a debilitating systemic disease which took hold in March 2013 but has roots in his childhood.

For Coventry, ME radically overturns the rules of time, thought and embodiment – an experience which has shaped the writing of this book. Through an illuminating blend of life transcription and deep imaginative projection, he shows how placing fiction into the stories of our damaged lives can remind us of who we are and who we might have been, even when so much of us has been taken away by illness.

From a mountaineering disaster in Kaikōura to a literary encounter in Austria, a country mansion to a volcanic archipelago, this novel is a strikingly vivid, at times disorienting series of journeys, stopovers and emergencies that take in the world, one in which Coventry is often an outsider, even when at home in Wellington. With purposeful unreliability and flashes of humour amid pain and searching, Performance takes us into a space where ‘reading’ itself fails as a description of how we meet the text. This is a generous, unforgettable vista of life within illness.

‘Like all great art, Performance defies paraphrase. This novel is a staggeringly ambitious work that few writers or scholars could conceive and probably only one could enact. It locates David Coventry in a genealogy of modern and postmodern writers including Virginia Woolf and Thomas Bernhard, whose illness intelligence is part of what makes their work innovative, important, and unforgettable.’ —Martha Stoddard Holmes, author of Fictions of Affliction: Physical Disability in Victoria Culture

‘A masterpiece of narrative disintegration with a deep psychic grip on the reader – a book whose design not infrequently had me exhaling in both profound affect and aesthetic astonishment. A monumental achievement.’
—Tracey Slaughter, author of Devil’s Trumpet and Conventional Weapons

'Compelling, thoughtful, memorable, suitably frustrating and disconcerting. It is a unique contribution to the literature of illness.' —Thomas Koed, Volume Books

David Coventry’s first novel, The Invisible Mile, won the Hubert Church Award for Best First Book at the 2016 Ockham New Zealand Book Awards. It was also published in the UK and Commonwealth by Picador UK, and the USA and Canada by Europa Editions. It has been translated into Dutch, Hebrew, Spanish, Danish and German. His second novel, Dance Prone, was published in 2020. David received an MA in Creative Writing in 2010 from the International Institute of Modern Letters, and he was the recipient of the 2015 Todd New Writer’s Bursary from Creative New Zealand. In 2022 he completed his PhD exploring the complexities and impossibilities of living a creative life with ME/CFS – a project which was selected for the 2022 Dean’s List, and forms the basis of Performance (2024). He was the 2022 Ursula Bethell Writer in Residence at the University of Canterbury.
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Merged thread

I started rewatching one of my favorite shows, House M.D., and saw this lovely scene in the first episode (starts at 1:23):



[Cut to clinic and House is with a patient, a guy]

Guy: I’m tired a lot.

House: Any other reason you think you may have Chronic Fatigue Syndrome?

Guy: It’s kinda the definition isn’t it?

House: It’s kinda the definition of getting older.

Guy: I had a couple headaches last month, mild fever, sometimes I can’t sleep, and I have trouble concentrating.

House: Apparently not while researching this stuff on the internet.

Guy: I was thinking it also might be fibromyalgia.

House: [Looks contemplative, and then serious] Excellent diagnosis [sarcastic]!

Guy: Is there anything for that?

House: [heavy sigh] Ya know, I think there just might be. [House goes out of the room, and to the dispensary.]

House: I need 36 Vicodin, and change for a dollar.

Nurse: (jumbled, I can’t tell)

[House gets his change and goes to a candy machine. He gets white candies out of the machine, and goes back to the counter. There he takes the Vicodin and slips them into his pocket, exchanging them for the candy.]

House: Exam room 2. [Places the bottle back on the counter.]

https://tvshowtranscripts.ourboard.org/viewtopic.php?t=33324
 
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