Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by Andrew111, Aug 15, 2010.

  1. Andrew111

    Andrew111 Member

    Because I have a high opinion of this book, I decided to do a mini-review here.

    Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia. Haavisto, 2008
    This book covers more than 250 pharmaceuticals for CFS/ME symptoms, comorbid conditions, and disease processes. It references formal research, case studies, and opinions from CFS/ME specialists. It is the most comprehensive guide to pharmaceuticals for CFS/ME. IMO, any doctor who attempts to treat CFS should have a copy of this book. And any patient who wants to discuss pharmaceuticals with a doctor should have this book.

    That was the good news. But the difficulty comes in when one actually sits down to read this book. It's a reference book. Sort of an encyclopedia of medications. This does not help you or the doctor decide what is best for you, what combination to use, or what order to try things. Also, you have to skim the entire book to find which treatments have the highest success rate. I have yet to accomplish this. And, I wish it had been written more like a literature review. IOW, include the key features from each study it cites, so I don't have to look up the abstract on the Internet.

    Still, what's the alternative. You could read other books which offer a handful choices, but they miss some off the good ones in this book. You could go to a website that offers multi-medication protocols. But you still might want to look up the drugs in this book. So although it does not solve every problem with understanding drug treatment, it is still the best CFS/ME drug reference book I've seen. So what I plan to do is look up the drugs I see other people recommending, and take it from there.
  2. rockgor

    rockgor Well-Known Member

    Thanks for the info.

    I don't think this book is for me. I have brain fog, Alzheimer's and lack of
    energy. Looks like some of our posters will find it helpful though. I am
    amazed at how much some folks here know about meds and symptoms and
    what not.

  3. Andrew111

    Andrew111 Member

    There's an interesting story behind the book. The woman who wrote it suffers from CFS/ME. She was not able to get help for it, and she was deteriorating. The clinic she was going to discharged her. She was approaching a state where she would not be able to walk. She began to gather information about mediations, but was worried she would never finish this. Luckily she found a doctor with an open mind. She showed him the manuscript and began trying treatments. Eventually she began to improve. She is not cured today, but doing much better.

    If someone has an open minded doctor who is willing to read, this book could be a big help.

  4. quanked

    quanked Member

    Sounds like the book could be helpful for those who can process the information and retain it. I am with rockgo--I have too much brain fog and memory problems not to mention the confusion I can experience.

    Have you considered contacting the author and recommending an update and some restructuring? If the author has CFIDS then surely she would understand the needs of this population.

    I have often thought about putting a book together (with the help of others) to explain the disease and provide treatment information. However, I always thought of such a project as being very simple in its presentation--I mean S I M P L E . And well written. This idea is so appealing when I am having better days. When I am in a crash I wonder what in the world I was thinking : )

    But if a book already exists then perhaps it could evolve into something that could be helpful to even those of us who have excessive brain problems.

    Just a thought.
  5. bct

    bct Active Member

    I have this book. Highly recommend it, no matter what level of brain fog you have. Well worth the money. The author is Finnish I believe, hence the book is not well known in this country.


  6. gapsych

    gapsych New Member

    Thanks for the information. I hope I can find it in the library.

  7. LindaJones

    LindaJones New Member

    Hi Andrew --

    I think it is important to see a doctor who specializes in cfs.
    The Whittemore Peterson Institute just opened ---
    There is a also the Hunter Hopkins Center ---

    Even if there is no cure it is important to be under the care of a doctor who
    is educated about cfs.

    Also some people are able to recover so it is possible.
    [This Message was Edited on 08/17/2010]
  8. inprog

    inprog Member

    Yes, Linda, we have seen lots of doctors and spent lots of money. I know Andrew has seen one of mine too, who is a specialist in CFS. I think those of us who have CFS have a different reality than those who don't. That reality is that one is often faced with spending for things that don't seem to work for us. We are out a lot of money. Also it does help, it really does, to be as proactive as possible. The patient does know volumes in compared to most doctors so it is a matter of finding open minded ones to prescribe certain things, certain protocols that are not a constraint for the doctor as well. That may not be the case in the begining of our life with CFS, but with reading, and reading and researching, etc. we get quite good at trying to find answers. Some of my ideas come from books like the one Andrew is kind of enough to review for us. An open minded doctor is willing to confer as to what might be a help even if it was something we read about. So it does not hurt to know what is out there. The field is always changing and doctors do learn from their patients. You would be surprised to hear that, most of you.

    Thank you, Andrew, for your review. It's on my wish list soon to be purchased. I shall have to check today to see if Amazon has it. I have not been here in about two years or more. Formerly as "ovrwhelm", wishing you kind regards from Los Angeles.
  9. Andrew111

    Andrew111 Member

    Hi inprog. Thanks for your post. Funny thing, I had forgotten I did this review. I'm happy to see I still agree with it.

    Best wishes to you.