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Article: ME/CFS Books for the Holidays

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 21, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Hope123

    Hope123 Senior Member

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    [Cort, you should save this thread and put it out around Thanksgiving next year so people can have more time to buy.]

    Note I have not read all these books. Also, if reading is difficult some might be available as books on tape. In addition, new version Kindles supposedly can read text aloud but I don't have one so don't know the details.

    In another thread I wrote about using libraries to spread info about ME/CFS, one person suggested

    Floyd Skloot -- wrote "In the Shadow of Memory", "The Night Time", and "Patient 002", all dealing to some degree about ME/CFS

    Other ideas:

    Dorothy Wall -- also with ME/CFS, Encounters with the Invisible

    Nasim Marie Jafrey -- The State of Me, a UK novel about a young woman who develops ME and her life afterwards

    Peggy Munson -- Stricken -- a collection of stories from people with ME/CFS

    Hilary Johnson -- Osler's Web

    Rik Carlson -- We're Not in Kansas Anymore -- CFS and the politics of disease

    Benjamin Natelson -- Your Symptoms Are Real -- written by an ME/CFS researcher who has been in the game for over 2 decades and is still involved (written in 2007 though so a bit dated)

    David Bell -- Cellular Hypoxia and Neuro-Immune Fatigue -- written by another longtime ME/CFS clinician and researcher; also A Parent's Guide to CFIDS (1999 - so a bit dated)

    Musicians with ME/CFS:

    - Keith Jarrett - jazz pianist

    - Awadagin Pratt - classical pianist -- I remembered he was out for a while with ?CFS but can't find the reference now

    For people struggling with depression, I'd also suggest 'Darkness Visible" by William Styron, who did not have ME/CFS but did have severe depression at the dawn of the SSRIs. I read this primarily because Styron is a great novelist but people with depression have said it helps them and others in understanding what depression feels like.

    For a good old-fashioned book about the politics of medicine/ research/ practice but not specific to ME/CFS, I suggest "Arrowsmith" by Sinclair Lewis, written in the 1920s. It has some dated details but the ideas are not all that far off from where we are today. Book won the 1926 Pulitzer.

    For medical mysteries, though not ME/CFS, the guy who started it all was Berton Roueche "The Medical Detectives" (long before House or the Discovery Channel) and later on, Oliver Sacks.
  3. Cort

    Cort Phoenix Rising Founder

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    [Cort, you should save this thread and put it out around Thanksgiving next year so people can have more time to buy.]

    I agree :rolleyes::rolleyes:

    I have read many of those books - they are all good. (These were new entries to the field - but I like the idea of a complete list - I will tack that away for next year :))
  4. Cort

    Cort Phoenix Rising Founder

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    I would add Rebecca Skloots book - about Henrietta Flack I think it is; very, very well reviewed and by the daughter of Floyd Skloot.
  5. LaurelW

    LaurelW Senior Member

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    Utah
    It's The Immortal Life of Henrietta Lacks. This is from Amazon:

    From a single, abbreviated life grew a seemingly immortal line of cells that made some of the most crucial innovations in modern science possible. And from that same life, and those cells, Rebecca Skloot has fashioned in The Immortal Life of Henrietta Lacks a fascinating and moving story of medicine and family, of how life is sustained in laboratories and in memory.

    Henrietta Lacks was a mother of five in Baltimore, a poor African American migrant from the tobacco farms of Virginia, who died from a cruelly aggressive cancer at the age of 30 in 1951. A sample of her cancerous tissue, taken without her knowledge or consent, as was the custom then, turned out to provide one of the holy grails of mid-century biology: human cells that could survive--even thrive--in the lab.

    Known as HeLa cells, their stunning potency gave scientists a building block for countless breakthroughs, beginning with the cure for polio. Meanwhile, Henrietta's family continued to live in poverty and frequently poor health, and their discovery decades later of her unknowing contribution--and her cells' strange survival--left them full of pride, anger, and suspicion.

    For a decade, Skloot doggedly but compassionately gathered the threads of these stories, slowly gaining the trust of the family while helping them learn the truth about Henrietta, and with their aid she tells a rich and haunting story that asks the questions, Who owns our bodies? And who carries our memories?
  6. Cort

    Cort Phoenix Rising Founder

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    Thanks Laurel. I think its in several best books lists - it's apparently VERY well written.
  7. urbantravels

    urbantravels disjecta membra

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    I'm definitely planning to read "Immortal Life" at some point soon.

    I'd add Laura Hillenbrand's "Seabiscuit" to the list along with her newest "Unbroken." I have "Unbroken" but haven't read it yet. "Seabiscuit" is just such a terrific read: when people tell me they saw the movie but didn't read the book, I tell them "You're missing out, bigtime." I picked the book up at random in an airport bookshop years ago and I've always loved it.
  8. LaurelW

    LaurelW Senior Member

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    I read Unbroken in about 3 days. It's so engrossing, you hardly notice the time passing. Laura's a fantastic writer.
  9. consuegra

    consuegra Senior Member

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    I too have read Unbroken and it is very good. The subject is a survivor, as is Laura Hillebrand. I am now heading out to get copies of The Sound of the Wild Snail Eating as I have been given the head's up that this is a great Christmas gift and a great small book. It has also been pointed out to me that the author, Elisabeth Tova Bailey, is donating a portion of the proceeds to the Whittemore Peterson Institute.

    Chris

    http://cfspatientadvocate.blogspot.com
  10. Cort

    Cort Phoenix Rising Founder

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    I just ordered 'How to Be Sick'.. Its part of my learning how to be as well as possible in the midst illness practice.
  11. LaurelW

    LaurelW Senior Member

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    That sounds like a good book--I ordered it from the library, so I'm waiting for it too.
  12. kurt

    kurt Senior Member

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    Wow this is a great book, what an amazing story (three stories really). My son, a college student home for the holidays, read through in one (long) sitting, he could not put it down...
  13. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    I put a hold on Unbroken at our library and like the rest of you here, read it in three days. Laura is an amazing writer! I am encouraged to persevere when I read stories of endurance like this, and it helps me put my struggles into perspective. I heartily recommend the book, but if you're squeamish, read with caution.

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