Customer Reviews

Reviving The Broken Marionette: Treatments For Cfs/Me And Fibromyalgia

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I developed CFS and fibromyalgia while living in the midwestern US, and the doctors I spoke with were less than helpful. They had few treatment options (which did not work for me), and threw up their hands saying there was nothing they could do, sending me on my way.

Not only was this a great overview of the many potential treatments out there, but it's empowering to see how much thought and research the author has put into the book. This is a great resource to recommend to doctors (if I could afford it, I'd send a copy of this to every doctor who was less than helpful), and a great springboard for more detailed research yourself about specific treatments you think will work for you.

There's a serious lack of literature about CFS treatments, and a serious focus on antidepressant-only treatments for fibromyalgia (at least where I've lived), and this book fills a void.

Another treatment book I thought.......Dr. Teitlebaum's books had pretty comprehensively covered the waterfront for me on that end. What more could a patient authored book offer? It turns out - a lot.

Maija Haavisto is a Finnish writer with CFS who's health was declining rapidly when she found a drug, low-dose Naltrexone. (LDN), that stopped the progression of her illness and improved many of her symptoms. (She used a draft of the book to convince her physician to try it.).

"Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia" focuses on the pharmaceutical drugs used to treat CFS. First she explains how each class of drug works and why it might be applicable. Then she covers how each drug works, study or physician information on each, it's possible side effects, cost and availability in different countries.

She clearly has a lot of contacts as she uncovers treatment after treatment option I had never heard of. A particularly important and now pretty much neglected source is the work of Dr. Jay Goldstein. Her chapter on Nootropics - "smart drugs" that skirt the boundary between stimulants and mood altering drugs (and are usually quite well tolerated) was eye-opening. Did you know Dr. Goldstein used ergoloid , a strong anti-oxidant that improves oxygenation to the brain and is used to treat migraine and senile dementia to good effect in some of this patients. Or that vinpocetine, which has anticonvulsant properties and improves brain microcirculation might be able to increase physical endurance in CFS.

Besides covering all the antimicrobrials, antimicrobrials, antivirals, beta blockers, corticosteroids, cholinesterase inhibitors, etc., etc. used in CFS she has an impressive section on experimental therapies. Did you know that tadalafil (Cialis), which is related to Viagra, improved shortness of breath and improved exercise tolerance in one study? Or that some people with ME/CFS have noted improvement from oversensitivity after using the motion sickness drug scopolamine? Or that theophylline might be able to help neutrally mediated hypotension (low blood pressure upon standing) in ME/CFS?

Sometimes Maija reaches beyond study and online material and covers treatments that possibly could be helpful. There's ibudilast (ketas), an anti-inflammmatory, anti-allergic vasodilator used in asthma and multiple sclerosis . Could it have neuroprotective effects in ME/CFS as well? How about monteleukast (singuliar) - an anti-inflammatory helpful in interstitial cytisus - might it have a role to play for some?

Did I mention she also covers studies on ME/CFS's cousins such as irritable bowel syndrome, interstitial cytisus? The book has a good index that can be helpful in tracking down treatments for symptoms and everything is fully referenced with over 1,000 citations. This 350 page, handsomely designed book is clearly a work of love and Maija's commitment to uncovering the last pertinent fact on every possible pharmaceutical treatment is impressive indeed. (Her web site contains regular updates on the drug findings for ME/CFS and Fibromyalgia)

Except for intramuscularly injected supplements (B-12, magnesium, Myer's Cocktail) there's no information on supplements but this book is a gold mine for information on the over 250 pharmaceutical treatments used in ME/CFS. At the very least it should be on the bookshelf of every CFS physician and many people with ME/CFS. Not every patient wants to dig through or needs information on all the anti-convulsant drugs, for instance, used in ME/CFS but if you want to learn about the wide variety of pharmaceutical treatments available for CFS -and the options your physician might have missed - this is the book. Five stars.

Check out a discussion here [...]

It's mostly an exhaustive review of the treatments for CFIDS/ME and Fibro. It's going with me to my CFIDS doctor next time, along with all the PostIts stuck on the treatments I want to ask him about.