Public libraries and ME/CFS

[Hope123]

I was talking to a librarian friend recently and asking her how to encourage libraries to buy books about ME/CFS or related to ME/CFS. It made me think of an idea which might be suitable for around May 12th, which is International ME/CFS Day.

Recently, there have been a number of books published in the US about ME/CFS or by people with ME/CFS. There have also been a couple in the past. Here are the ones I can think of off the top of my head - pls. add if you know more. Consider also asking your library to stock e-books as well as a paper copy; e-books are downloadable from libraries to any computer and are especially useful for those who are homebound.

- Dorothy Wall -- Encounters with the Invisible
- Lauren Hillenbrand -- Seabiscuit and Unbroken -- the latter getting a lot of press now
- Elizabeth Tova Bailey -- The Sound of a Wild Snail Eating -- also new and is on several
top 100 lists this year: http://www.elisabethtovabailey.net/events.htm
- Toni Bernhard -- How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and
Their Caregivers -- published this year
- Floyd Skloot -- don't remember title (sorry)
- A UK book written by a young woman with ME (someone help me with the title!)

Aside from asking your local library to stock these books, consider:

- asking them to host a display of these books around May 12, along with some flyers about ME/CFS and info about local support groups (if any in your area)

- asking any reading groups they host to take up one of their books to read/ discuss

Library usage in the US is at an all-time high due to the recession -- people go there to jobsearch, look for free entertainment materials, pick up their kids after school, etc. -- so I think they are a good way to get exposure. Also, libraries are suppose to reflect the needs of their communities and usually welcome suggestions.

 

[Sasha]

Great idea, Hope - I hadn't been aware of many of these. I don't tend to read about other people's experiences with ME but I'm tempted by the Buddhist one.

I've provided links to the books on UK Amazon so people can read up on them. Remember you can donate to ME Research UK by going to UK Amazon via their homepage (see my sig) and to Phoenix Rising using both US & UK Amazon.

- Dorothy Wall -- Encounters with the Invisible
- Lauren Hillenbrand -- Seabiscuit and Unbroken
- Elizabeth Tova Bailey -- The Sound of a Wild Snail Eating
- Toni Bernhard -- How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers
- Floyd Skloot -- In the Shadow of Memory

Sorry, I don't know what the final title on your list is!

 

[Hope123]

I forgot to add: for context, the libraries where I am have evolving theme displays around the library year-around-- for this month, it would be things like "Christmas Holiday Cookbooks." For other months, "Local Hikes" "Earth Day", etc.

Also, if support group members live in your community, ask them to lend their support to your efforts -- e.g. calling the library after you've presented your idea.

 

[Sasha]

I forgot to add a thing to my post too! On Amazon, you can use the "look inside" function to check out the first few pages or chapters. Very useful to get an idea of whether you think it's worth recommending.

 

[lancelot]

I can tell you that the LA county public libraries have about 80% of all CFS/ME books written. i checked them all out and read them over a 1 year period. the other 20% i bought mostly used off amazon. Some of the best ones were from KDM( for research and treatment) and Dr Bell(for understanding this disease).

 

[Anika]

Another good book - for libraries, patients, even doctors

This is a great idea, Hope. I doubt if I get around to anything for the next month or so, but maybe following up in February or March would give enough lead time for ME / CFS day.

This list is also a great resource for gift ideas!

Another book that I'd like to add to the list; by an ME/CFS patient and about treatments for ME/CFS and FM patients:

Maija Haavisto - Reviving the Broken Marionette
http://www.brokenmarionettebook.com/?book
This site has information about buying, including from Amazon (help the author by linking to Amazon from her site if you're interested in buying) or as an ebook.

I recently got the book, published in 2008, and have been very impressed with it. (I may even get a copy as an ebook next year if I get an e-reader of some type - then I could easily have it with me at Dr appointments, along with other notes). It discusses over 250 treatments (mostly medications) with side effects and various other information - and is extensively referenced to sources, which would give it credibility with medical professionals. The author is a Finnish journalist now living in the Netherlands, and it's written in a very clean and professional style.

Anika



http://www.brokenmarionettebook.com/?book

 

[Cloud]

Oslers Web ...Hillary Johnson

The clinical and scientific basis of ME/CFS....Dr Byron Hyde

 

[beesknees]

Also, I believe most libraries allow book donations. I know I occasionally donate books I've read to the library. So if anyone has a copy of a CFS book they have already read and can bear to part with it, they could give it to the library.

 

[WillowJ]

Also, I believe most libraries allow book donations. I know I occasionally donate books I've read to the library. So if anyone has a copy of a CFS book they have already read and can bear to part with it, they could give it to the library.

Good point, but make sure that you are clear with the library that this is a donation for circulation. In my district, donations automatically go to the book sale. You have to do something special to get the on the shelves.

Has anyone read Stricken?

 

[usedtobeperkytina]

Great idea.

Tina