Suggested readings on supporting someone with CFS/ME?

Discussion in 'Fibromyalgia Main Forum' started by girlfriend_2006, Jun 16, 2006.

  1. girlfriend_2006

    girlfriend_2006 New Member

    Hi All,

    My boyfriend has M.E. He has been bed-bound now for three months and is in terrible pain (as I'm sure you've all experienced).

    He was bed-bound for four years (before we met) and was in remission for about a year and is now suffering with this DD again.

    I have posted here before asking for suggestions on ways to help him. I am now hoping you can make some suggestions on reading material that I should look at or even websites for the loved ones of those battling this terrible DD?

    I want to know as much as I can and be as supportive as I possibly can be.

    Many thanks and best wishes to you all,
    teri


    [This Message was Edited on 06/26/2006]
  2. Marta608

    Marta608 Member

    First of all, Teri, how lucky he is to have you in his corner!

    I just found, thanks to another board member here, Devin Starlanyl's website that has a lot of good info on it. You can google her/it easily. Just type in Devin Starlanyl's website.

    And of course the library here has an abundant number of good articles and advice on the subject. See the top of the page in purple marked LIBRARY. Go from there. [OK, so it's above the purple tabs....lol]

    Good luck to you both!

    Marta
    [This Message was Edited on 06/17/2006]
  3. mrsjethro

    mrsjethro New Member

    Bump for Teri for maybe some more suggestions.....
  4. mrsjethro

    mrsjethro New Member

    Teri,
    Just a thought. I'm rather new to this and didn't recognize the term M.E. What I found when I did a search was that it is also CFS or chronic fatigue syndrome. (at least that's what I got from my search) Sometimes people don't answer some of these for this reason. They may not recognize what you a searching for. Also this board moves pretty fast, especially on weekends.

    You might consider changing the title of your post to something like "need help to support boyfriend with cfs" or "suggested reading for cfs". I don't really know how to put it into words. If this is what you are looking for, that is.

    If M.E. is the same thing as CFS, you also might find more results by looking for reading material for the CFS terminology rather than the ME....even if just looking in bookstores.

    Any of these syndromes/diseases are very difficult for the people that are going through them, but I also think it is equally difficult for the people that love them. I think that it is wonderful that you care enough to take the time to try and understand his condition more. Just learning about it and trying to understand what he is going through will help him far more than you can ever imagine.

    (((((hugs to you Teri)))))
    you sound like a wonderful and supportive person.
    Deb
  5. findmind

    findmind New Member

    If you'd like to understand what CFS/ME can do to a person, there are a couple of easily bought books:

    Running on Empty by Katrina Berne, Ph.D. is the best one I've ever read.

    Living with M.E., the chronic/post-viral fatigue syndrome by Dr. Charles Shepherd, Medical Director to the M.E. Association (at least back in 88-90).

    Do his drs know he is bed-bound? What do they say? Are you in U.S.? Does he have good ins./money to get specialist care?

    Do you know you can get CFS/ME? You must be ever-vigilant and keep your own immune system strong and manage your stress levels. Take good care of you so you can help him, ok?

    You are his angel right now, and we here all care about him and you, so please keep us up to date, will you?

    findmind
  6. findmind

    findmind New Member

    BUMP for Teri, plz

    findmind
  7. girlfriend_2006

    girlfriend_2006 New Member

    Thanks very much for all of your suggestions!
    I am in Ireland and I don't think there is much of a support network here but I will be sure to locate the books you've mentioned!

    To findmind: as far as I know he is not in any real consultation with his GP and I doubt if he knows he is bed-bound. He is not even on painkillers!

    I know he tried just about everything a couple of years back and gave up as nothing worked. Now since his relapse he just figures he has to suffer it out I guess.

    On a positive note, he had a good day last week and we actually got to spend a couple of hours together, thankfully.

    Also, I wasn't aware that I could catch it. I thought there was a lot of disagreement on that--any further information you could point me to on that would be greatly appreciated as well!

    I will keep you posted for sure!

    Many thanks and all the best,
    teri
  8. Marta608

    Marta608 Member

    Read my post "If You Want to Feel Better, Read This". It's not a scam, it's what's helping me.

    Marta
  9. abbylee

    abbylee New Member

    The Purpose Driven Life is one of the best books I've ever read. I can't find it to give you the author's name, but reading it really made a difference in my life.

    I found it! The author is Rick Warren.

    abbylee
    [This Message was Edited on 06/24/2006]