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Bestselling Author’s Latest Novel Features Girl with ME/CFS

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Bestselling Author John Connolly’s Latest Novel Features Girl with ME/CFS

“I know some people with ME, and tried hard to get it right.”
John Connolly

If like me you are a fan of thrillers – especially ones with a more than the unusual twist – then you probably don’t need me to introduce the almost legendary work of Irish-born John Connolly, and his stalwart hero, detective Charlie Parker.
 
But, I think it is an important development when we come across such a renowned author choosing to include ME/CFS as an illness within their work. Indeed I am left wondering if this is the first occasion such a thing has occurred and if it might indicate an increased level of acceptance as to the legitimacy and seriousness of our disease.
 
In Connolly’s latest novel A Song of Shadows our hero is nursing his wounds and recuperating in a rented house next door to nine year old Amanda and her mother:

“Amanda Winter often dreamed: strange, fevered visions, filled with confusion and dislocation. It was why the dream of the girl on the sand hadn’t disturbed her more, for she’d had worse. Had she been older, she might have understood it as a function of the headaches and muscle pains that she experienced. Sometimes her mother would give her half a sleeping pill to help her drift off, especially if her condition had been particularly bad for a couple of nights.
 
Her illness had a name – Chronic Fatigue Syndrome, or more commonly myalgic encephalomyelitis, ME – but one of the pupils in her old school, a girl named Laurie Bryden, had claimed that ME wasn’t really an illness at all. She’d heard her father say so. Her father said it was just something that lazy people used as an excuse not to get off their asses and work or, in the case of someone like Amanda, as a means of getting away with low grades because she was really kind of dumb. It had taken all of Amanda’s willpower not to sock Laurie Bryden in the jaw and knock her flat on her back, but what good would have come of it anyway?
 
Amanda hated being sick. She hated being tired. She hated waking up and wondering if today was going to be a good day or a bad day. On good days, she would sometimes try to do too much, with the result that the bad days to follow were so much worse. She hated the low-level headache that always seemed to throb in her· skull, and how long it took her to recover from colds and infections. She hated the night sweats and the weird pains and the tenderness in her armpits…”

I have been a fan of Connolly’s for as long as I have had ME; indeed it is because of my illness that reading is now largely confined to novels. I find reading a novel – no matter if it is a page or a chapter – much more relaxing and conducive to any illness management than meditation or other forms of relaxation therapy (which I have never been able to adhere to for very long). In fact I would say that novels have at various times throughout this illness helped me cope specifically with sleep and cognitive problems – often bringing me to a place where I was better able to function.
 
song-of-shadows-225But when I reached this latest chapter – obtained from my local library (sorry about that John but needs must and all that) – I happened to be sat on the lavvie. So imagine for a moment my shock when Amanda turned out not only to have ME but also that Connolly had focused on that aspect of ME – sleep problems and vivid dreams – which I would rate as one of my most difficult to accommodate symptoms. I simply cannot wait to see how the plot develops and for once bedtime cannot come soon enough.
 
I reached out to John Connolly on Twitter to thank him for featuring a patient with ME in such a clearly well-researched way. He tweeted back, “Very kind of you to say. I know some people with ME, and tried hard to get it right.”
 
A Song of Shadows is currently available in the UK and will be released in the USA on 29th September 2015.

 
Russell Fleming @Firestormmer

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12 comments on “Bestselling Author’s Latest Novel Features Girl with ME/CFS
  1. Merry Speece says:

    Hello, Russell Fleming.

    I liked your review.

    In 1996 Lynne Sharon Schwartz published The Fatigue Artist, a novel about a woman suffering from chronic fatigue syndrome.

    Of course you must know of Nasim Marie Jafry’s novel The State of Me published in 2010.

    1. Hi Merry,
      I enjoyed coming across this in the way that I did and receiving the reply from John Connolly – took me a while to calm down last night 🙂
      For such an international best seller of popular fiction I think including ME and in the way that he chose to, was unique. I certainly hope others will now consider featuring our disease in their work as well.
      I have to mention that at 3.30am this morning I was laughing out loud in bed. This novel – and others in the series – is not all ‘thrills and chills’ by any means. Well worth a read or a listen as I understand now it is on audio book too 🙂
      And thank you for the reference to the other novels. I do of course recognise Nasim’s which is very highly regarded I understand.
      Kind regards
      Russ

      1. Merry Speece says:

        Yes, that is exciting that you heard from John Connolly! I hope that you recover soon.

        You may be right that this is a first that a writer who doesn’t suffer from ME/CFS who has created a character with the illness. Nazim Marie Jafry’s novel, of course, is autobiographical. I’m not sure about Lynn Sharon Schwartz’s book. I read it such a long time ago I can’t remember much other than I supposed that it was autobiographical.

        Thanks for introducing me to a new writer. I will look for John Connolly’s work.

        1. Douglas Coupland’s novel Eleanor Rigby has a minor character with CFS/ME who falls in love with a major character who has severe MS. He’s a very well-known author and doesn’t have CFS/ME, though it’s just a side character. Still, I was quite excited as he is one of my favorite authors.

          I’ve had two novels about CFS/ME and one about EDS published in Finnish, they aren’t autobiographical, though. My next one will focus on mold illness. I’ve also written two plays (based on my novels) about CFS/ME, the first of which premiered in Finland in 2014 – I think it might be the first play produced on the subject. Still hoping to sell the translation rights for my novels!

  2. Walter Irvine says:

    Hi Russ, I’m not much of a reader anymore but I’ll give this a shot. My wife of 12 years killed herself in February after 20 years of Myalgic Encephalomyelitis. I came down with M.E. in 2009 but seem to be responding well to a study medication and medical marijuana. Thanks for helping to shed light on our debilitating disease.

    1. Hi Walt,
      I am very much aware of your personal loss. You’ll perhaps recall we communicate via Twitter? Again I am so very sorry, but was also glad to hear Carol Head’s remarks at the recent CFSAC meeting.
      Connolly is a very good writer I find, and the Charlie Parker series is a strong recommendation from me to any adult who likes a good thriller.
      You can get the book on audio so maybe listening to it would be more amenable to your own situation at the present time? Others on Twitter are aiming to get the audio version, and I might do so as well now – just to see who plays Charlie and the other characters, especially the ones who had me laughing so hard this morning!
      All the very best
      Russ

  3. Sarah bellany says:

    This is great . We really are poping up everywhere.

    I’ve often wondered if Mr Darcys cousin had ME..The sickly one he was “meant” to marry.

    Nice spotting 🙂

  4. I’m writing a novel, Pride’s Children, Book 1 of which will come out as soon as I finish final edits – its main character has CFS.

    I have CFS myself, and have had it for 25 years. This is one way to educate people painlessly about how a person is and isn’t affected by having illness turn their life upside down.

  5. dianne mawhood says:

    thank you for including a character who suffers from this devastating illness . you did it well without giving the reader a mdical lecture . i have had moderately severe/severe ME since 1979. it has completely changed my life . i live in bed , or in a chair . i use a wheelchair .I manage it with supplements , meds and careful monitoring of every action mental and physical . once again thank you

  6. Phyllis says:

    I pray to God doctors and people who do not understand soon will.

  7. Not to “toot my own horn”, but I have written two published novels featuring a police officer who is stricken with ME/CFS and winds up having to go on disability. He is able to function enough that, with help from three unlikely allies, form a private detective agency.

    The books are based on my own experience with contracting ME/CFS later in life and the devastating effects it had on my life.

    For more information, you can go to my website: http://www.jameswjorgensen.com.

  8. Cindy Downey says:

    It’s great that a well known author has included a character with ME in his novel. Gaining knowledge while being entertained is often a less “painful” way to accomplish learning.

    I would like to suggest that people consider requesting their library order Mr. Connolly’s new book. That way more people will have access to it, and can learn from it.

    And, we can request that our libraries order meaningful/helpful books on ME. A couple books I would like to suggest for either library requests, or one’s own reading are: 1) Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia, by Dr. Alison Bested, and Dr. A.C. Logan, and R. Howe; (Dr. Bested was one of the authors of the Canadian Consensus Document, which several clinicians and researchers use to work in the ME field);
    2) Let Your LIght Shine Through, by Dr. E. Stein – available at http://EleanorsteinMD.ca

    Both these books have helpful suggestions for people with ME. As well, the National ME/FM Action Network has some excellent documents including: TEACH-ME A Sourcebook for Teachers of Young People With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FMS). This was written by Dr. David Bell, Dr. Bruce Carruthers (the lead author for the Canadian Consensus Document), and the TEACH-ME Task Force. You can purchase the TEACH-ME book from the National ME/FM Action Network, or download it from their website. Their website is: http://www.mefmaction.com; email: mefminfo@mefmaction.com; postal address: National ME/FM Action Network, 512-33 Banner Road, Nepean, Ontario, K2H 8V7, Canada; phone 613-829-6667; fax 613-829-8518

    The National ME/FM Action Network has an excellent website with up to date research, and very helpful documents for people with ME and/or FM. This non-profit, registered charitable organization has been in operation since 1993, and works to advance “the recognition and understanding of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia through education, support and research.” This group spearheaded the development of the Canadian Consensus Document used by many researchers and clinicians worldwide when they study and treat ME. The overview for the Canadian Consensus Document is also available on this website. It’s a 20 page summary of the Canadian Consensus Document, which can be very useful for people with ME and doctors to consult. This overview is another document that could be helpful for libraries to include in their catalogue.

    Even small actions like adding a good ME resource book to our local libraries could help others, both ME patients and those who care for them, learn more about this devastating disease.

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