The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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POLL: Do you still read books and newspapers now that you have ME/CFS, or do you read much less?

Discussion in 'General ME/CFS Discussion' started by Hip, Sep 20, 2017.

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Do you read just as many books and newspapers now that you have ME/CFS, or do you read less?

  1. I am actually reading more books, newspapers and magazines since developing ME/CFS

    11.4%
  2. I read about the same amount of books, newspapers and magazines as I always have

    8.1%
  3. I am reading slightly less now that I have ME/CFS, but my reading habits have not changed much

    1.6%
  4. I am reading about 50% less books, newspapers and magazines since getting ME/CFS

    15.4%
  5. I am reading about 90% less since getting ME/CFS — substantially less than when I was healthy

    44.7%
  6. I never (or hardly ever) read books, newspapers and magazines now that I have ME/CFS

    18.7%
  1. Hip

    Hip Senior Member

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    This poll asks whether the amount of reading you do has changed since you developed ME/CFS: are you still reading as much as you used to when you were healthy, or do you read less now that you have ME/CFS?

    Here I am referring to the in-depth sort of reading, that involves getting stuck into a good book, or reading long newspaper and magazine articles and essays on interesting topics.

    I am not talking about reading emails, text messages, short forum posts, or reading stuff online when you are Google searching for something, which just information hunting rather than in-depth reading.



    Before getting ME/CFS, I used to be a fairly voracious reader, reading books, newspapers or magazine articles for perhaps at least 3 hours each day, sometimes much more.

    However, since getting a viral brain infection in 2005, and then not long after developing ME/CFS, I have not read a single new book (nor re-read any of my best loved books), and I now rarely read newspapers and magazines (probably just a few newspaper articles a month, and even with those, I just skim through).

    In my case, the brain infection led to some ADHD symptoms, making reading much more difficult. But in addition, I find that the brain fog of ME/CFS makes it hard to get much out of reading: reading requires that your mind and imagination works fluidly, because it's your mind and imagination that fleshes out the words and descriptions on the page. But I find my mind is usually too tired or brain fogged for this, so it just becomes too much effort to read, and thus I find reading is no longer enjoyable or natural.

    Also, if you are like me and have the emotional flatness symptoms of ME/CFS, you may find it harder to tune into literature with an emotional content, because instead of grabbing your interest, that emotional content seems to have less meaning for you.

    Watching TV is easier, because the television does all the work: you don't have to use your imagination to flesh out the written word; the TV provides all the sounds and images for you. So I find watching the news on TV, or watching a film on TV, much easier than trying to read a newspaper or book.

    These days, I find I mostly read ME/CFS-related stuff online, which still requires some effort, but I make the effort because it seems to be the most pertinent topic to read if you are hoping to find treatments that may improve your health. But I would not call this in-depth reading, and I would not call this getting lost deep within an enjoyable book or article; my reading of ME/CFS stuff online is just information hunting.
     
    Last edited: Sep 21, 2017
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  2. Wonko

    Wonko Senior Member

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    The other side.
    I haven't stopped reading totally. I did for several years as books are quite heavy and it was easy to lose the book/page after a while of holding it, that problem was solved once I tried an e-book (now a tablet) probably about 3-4 years ago.

    I used to have literally thousands of books, couldn't move for the damn things, or their bookcases, boxes etc. I no have less than 50.

    As may have been obvious from the sheer quantity of books I used to own I used to read quite a bit, both fiction and nonfiction, in several areas. At any one point I could have several books on the go at the same time and could consume, depending on size, a couple of books a day.

    I now read maybe 2-3 books a year, light fiction, and that's only because of the tablet I use as an e reader.

    It's just that most of the time, reading is such hard work, it's stopped, most of the time, being in any way pleasurable, or relaxing, and due to my CI it's not exactly informative either.

    I do not read newspapers, gave that up as too much like hard work 30 ish years ago.

    edit - I voted 90% reduction but have just realised I may qualify for the hardly ever section ;)
     
    Last edited: Sep 20, 2017
  3. Binkie4

    Binkie4 Senior Member

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    I find it hard to remember the plot of novels. Before I had ME, reading was a deeply loved activity.

    Now I dip into nonfiction for a page or two. That's it.

    I still buy books in the belief that I am what I was but I have piles of unread books.
     
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  4. Diwi9

    Diwi9 Senior Member

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    I'm unable to read at any length. During my worst time, I could only skim PR posts. Things are slightly better at this time with treatment for mast cells, which has improved brain fog. Two graduate degrees and a member of two book clubs, although I haven't attended in months and had to resort to audiobooks...not the same.
     
  5. Snow Leopard

    Snow Leopard Hibernating

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    My eyes hurt like hell when I read books, so much less!
     
  6. NotThisGuy

    NotThisGuy Senior Member

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    i only read cfs related stuff. biological pathways and such things. so everything that could help me to get better.
    i lost 100% interested in newspaper and politics.
    They dont care about cfs, so I dont care about them.
    Since I have cfs I also have way too improved critical views to read all that stuff in newspaper.
    It's pretty much 100% sponsered content. hidden addvertisement covered and sold as articles.
    Like: "oh a video or meme showing how drinking tap water saves the environment... yeah sure.... the people behind this video or meme are also making money when your health declines by this poisonous tap water."

    books are just too long and I dont have the concentration for that.
    magazines would be a nice thing if they were about CFS.
     
  7. TigerLilea

    TigerLilea Senior Member

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    I read much more now that I have CFS/ME simply because I have the time. I've been a reader since my early 20s and always have a book on the go. Now I'll sometimes have several books that I'm reading at the same time. I do find on the days that I am extremely exhausted I'll have to go back and reread some parts as I don't always retain what I read.
     
  8. Subtropical island

    Subtropical island

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    I'm in a book club (although have been struggling to make it to meetings now). I would bring home a stack of books (held in hands arms straight it would cover my face) every month, read them all, plus half a dozen on my e-reader and then have newspapers, emails, internet browsing on top of that.
    I've always been a voracious reader and the only times I've not been up to reading in the past I was feverish hospitalised (unable to breathe) shortly after or similar.

    ETA: I still have such a stack on my bedroom windowsill because I can't quite believe I won't be able to read them. I pick them up, but never make it through the first page before I forget what I was reading or get the shakes. One day soon, I'll have to be brave enough to return them to their owners, unread.

    Now I have to put on a timer for 15min even to read email and visit this forum. If I exceed 30minutes I get PEM.
    I shedule one email or two at most a day to write. Most days I try not to so I can do other things in the day.

    I can listen to audiobooks (without a timer) but only if they're like terry pratchett where if you fade out for a bit it's still fun.
    I can watch TV shows but I often find I'm missed the last few minutes, I can see some of the images in my memory but none of the conversation.

    I've been editing a book recently of short stories by locals (yes, this is insane but I don't want to always be letting people down and hoped this would be a positive thing I could do. It wasn't.) I used to be able to do this in one sitting and excellently without any effort at all, in fact it was harder not to edit when reading.
    Now, I schedule reading 2-3 pages a day and editing, missing a hundred things I'd normally edit, and carrying on in the ME coping system of 'let it go'. Most days I can't even do that. It has taken 2 months and I've lost the chance to do a lot of things, like sitting in the garden, I want to do instead.

    Reading a newspaper is an exercise in sitting next to the paper for a while and then going to bed, having absorbed the odd picture.

    Reading this forum is technically something I should be rationing more. My fingers shake and end up hitting the wrong part of the screen, often delete my messages with an inadvertent flick, and I get weak and shaky ...when I stay here too long.
    But I am lonely. (I'm not alone, I have support, but no-one who could comprehend what this is like except my 80+yr old dad, who says he'd struggle to live with this. And I was supposed to be taking care of him.) sometimes I just go to the newsfeed and smile to see your avatars liking snippets of text. It helps to feel a little bit like I'm present while conversation is going on.
    I'm so unutterably bored. Furious, suffocating in the rest I have proven over and over I need to do.

    I ticked the 90% box becasue it included how much I used to read before. The I never read box could apply to lots of people who aren't struggling with the change but never read a lot anyway.
     
    Last edited: Sep 20, 2017
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  9. Subtropical island

    Subtropical island

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    One sign I need to rest RIGHT NOW is an inability to be succinct. Pithy. .... I can't seem to choose between parts of what I want to say and ramble on ...
    See?
     
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  10. Diwi9

    Diwi9 Senior Member

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    @Subtropical island - Hang in there. I know and understand your boredom and inability to abate it. Sounds like you suffer serious cognitive dysfunction too. At my worst, I found that at different times of day, I had more ability to focus...and waited for those moments to do my online reading and writing. When the screen started to be too bright, or my muscles started to fasciculate, that was the time to rest. Do take care...hugs!
     
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  11. alicec

    alicec Senior Member

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    I read much more - I have more time and there's so little else I can do - but the content is different.

    I've always been a voracious reader - fiction, non-fiction and newspapers in my spare time, many scientific papers in my work.

    Now I can't read things that are too technical, too slow moving, philosophical or introspective. I need some kind of strong narrative to hold my concentration.

    Mostly now this is fiction, but not always. Reading a book in bed is easiest - sitting at a screen most difficult.

    Scientific papers are difficult - usually I skim and ignore most of the detail, just look for the essence - and these days I read very few.

    Newspapers I abandoned long ago but mostly because the content was so abysmal. We have excellent news and current affairs radio programs on our public broadcaster so now I keep up to date with these.

    My eyes do get sore but otherwise the boredom would be intolerable - so I keep reading.
     
  12. ebethc

    ebethc Senior Member

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    I have always read a lot - and that's still true. However, my reading is more superficial (eg very broad + shallow, vs medium breadth + very deep)... More than one factor, though, and not all CFS related
     
    Last edited: Sep 25, 2017
  13. Sandman00747

    Sandman00747 Senior Member

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    My eyes read the words of books, journals, and magazines, but somehow my brain, which used to absorb information so readily, does not process those words into proper thought and comprehension. So if I want to understand anything

    nowadays, I have to reread it at least five times which becomes so frustrating I often just give up. This translates into a massive reduction in my reading over the years which I can't help but think has dulled me quite a bit.
     
  14. Cheesus

    Cheesus Senior Member

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    My eyes can't handle it, but I listen to a lot of audiobooks now.
     
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  15. Oberon

    Oberon Senior Member

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    Same here, I use to go through 1-2 books a year reading before I had CFS. Now I easily go through 1-2 books a month with Audiobooks. I find audiobooks with the right narrator to be a much more enjoyable experience.

    I have a large preference for fiction, i.e. fantasy and sci-fi, because it takes a heck of a lot less focus and If I miss something here and there it's not too big of a deal.

    It's especially nice during crash days to be able to lie in bed with the lights off and just do nothing other than listen to an entertaining audiobook. It keeps my mind occupied and allows my body to rest.

    I can post up recommendations if anyone's interested.
    ___________________________
    On a side note one thing that many people don't realize is that they can get thousands of free ebooks and audiobooks from their local library.

    Most libraries these days have Overdrive which lets you check in and check out ebooks and audiobooks. It's a great money saving tool for those who can't afford books and don't want to acquire them using illicit means.
     
  16. Cheesus

    Cheesus Senior Member

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    They're my genres too. Audiobooks are my primary form of entertainment. I can get through maybe 4 per month if I am on a binge.
     
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  17. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I gave up reading books for a while but since acquiring a Kindle I've been able to read more. All of my ebooks come from my library's Overdrive site. I find it difficult to hold on to actual books. Kindles can be read in the dark. I usually fall asleep while reclining on the couch, Kindle in my lap or having fallen to the floor. It automatically shuts off after a few minutes of non-use.
     
  18. rosie26

    rosie26 Senior Member

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    I stopped reading the newspapers at severe onset and could only read a little bit at a time in those years. I had to distract myself though from how bad I felt symptom-wise so I did begin to read some light fiction books if my eyes were able to but I paid for it also if the books were too heavy to hold in bed, most were paperback but even some of those were too heavy. I mainly listened to talkback radio, volume low. I found the TV too hard mostly. I couldn't handle any bad news or dramas.

    I used to have the newspaper delivered and would read before going to work but had to cancel it at severe onset. My severe onset was two weeks after 911 in 2001. I couldn't handle any of that terrible and shocking news. I was in a major physical crisis myself, with ME.

    Throughout my moderate years I was able to read more fiction books and autobiographies at a slow pace. I think looking back from now, books are better for me than reading online. I bought a laptop around 2009 and now read mostly online. I find it too much really. I kind of long to go back to when I didn't have a computer for that reason. I get too addicted to looking at things on the net when I should be resting.
     
  19. Maria1

    Maria1 Silence speaks volumes

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    I read an on line newspaper every day but I don't read it in depth; I skim.

    I've probably read 2 novels since I became ill. I still buy them with the intention of reading but find reading really, really tiring.

    When I read its as if I can actually physically feel my brain straining to work. As if it needs a good oil, or the neurons aren't meeting up (if that's what neurons do!).

    I try not to spend too much time on here, because it wears me out, especially the science posts, which interest me, but I struggle to read and understand.

    My job (from which I was retired on ill health) involved vast amounts of reading. The last two jobs I did both had the requirement 'able to analyse complex written information' .... now I struggle just helping my kids with their homework :(

    ETA added 'written' to complex information
     
    Last edited: Sep 21, 2017
  20. anni66

    anni66 mum to ME daughter

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    My daughter used to devour books. She no longer reads other than short blog pieces. It' s too hard for her to start something and then either realuse the limits she has now, or to read more than she should and suffer for it later.
    She is still positive and has told ne how many bookcases i will have to buy fir when she can immerse herself again .
     

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