Reviving the Broken Marionette

Frequently asked questions

Target group

Is the book appropriate/useful for people with severe CFS/ME?
The book fully acknowledges the spectrum of severity in CFS/ME - that being "severely affected" does not mean just being "almost bedbound" but that it can mean being almost completely paralyzed, as well as extremely sensitive to medications. Those who are very ill may not be able to read the book themselves, but it is wholeheartedly recommended for their family, carers and doctors.

Is this book useful for me if I have chronic fatigue but I don't know if I have CFS/ME?
This book is not about chronic fatigue, but it is probably still useful to you, even if it later turns you have another chronic illness.

Which doctors do you recommend this book for?
It would be useful for any general practitioner (as well as family practitioners and pediatrists), but especially for any neurologist, rheumatologist, immunologist, endocrinologist, internist, psychiatrist and infectious disease specialist.

Should I get this book even if I'm already seeing a CFS/ME or fibromyalgia specialist?
I am sure it wouldn't hurt. The book is bound to contain things they don't already know, and if you read it you can understand your illness and your treatment much better. Knowledge is power.

Shouldn't we just accept our illness instead of trying to find some miracle cure?
I do think we should accept our limitations, but that does not seem we should not aim to get better. It is possible, and it is much better to do it with the help of medical science than randomly try different therapies. This book does not promise miracle cures nor anything else. The only thing I do promise is that you will be much more educated about treatments for CFS/ME and fibromyalgia.

Author

Do you have CFS/ME or fibromyalgia yourself?
I have had progressive CFS/ME since August 2000. I also have asthma, IBS, PTSD, myofascial pain syndrome (MPS) and hypopituitarism. I don't have fibromyalgia.

How many of these medications have you tried yourself?
About ten. One question I sometimes get asked is "Did you try them all yourself?" No, it is not a blog. There is some anecdotal information too, but mostly I am relying on scientific research and doctors' experiences.

Are you a doctor?
I am not a doctor or a medical professional, though I do medical writing and translation for a living.

Why did you write this book?
The short answer is: because I wanted to help people. For a longer answer, read my author bio.

How can you write a book if you really suffer from CFS/ME?
I have got a lot better thanks to medication. I have had severe cognitive problems, cognitive fatigability and of course everything that comes with CFS/ME. The project was far from easy to complete, more due to the stress it caused than the actual work. Because I am so familiar with medicine it is actually much easier for me to read a paper on neuropharmacology than to read a novel, even though I've been a bookworm since the age of four.

How did you collect all this information?
I made use of about dozen books about CFS/ME and fibromyalgia, a few books about chronic pain, hundreds of studies, papers, websites and articles and several pharmacology and drug references. Having an institution subscription to medical databases was very helpful. Some of the information I collected personally from researchers. A small part of the content is anecdotal. Luckily I had friends and other resources to help me, because my source materials contained information in e.g. Spanish, Polish and Icelandic.

How come you claim there are over 200 treatments, when many doctors would completely disagree with you?
Anyone who claims that CFS/ME or fibromyalgia cannot be treated or that there are only a few treatments available simply doesn't know what he/she is talking about.

What do you think that causes CFS/ME and fibromyalgia?
I personally believe that CFS/ME is always or usually caused by a virus, but other contributing factors may include bacteria, fungi, genetic vulnerability, chemical exposure, vaccinations and other things. There may be several categories, such as the "traditional" ME caused by enteroviruses and perhaps some cases caused purely by chronic bacterial infections. I believe fibromyalgia to be caused by problems with "brain configuration", though infectious agents, autoimmunity and other things may play a part.

That is just my personal opinion, however. My book does not take sides as to what causes these illnesses. Almost all possible theories are covered, and most treatments are compatible with all or most hypotheses.

Who is your "favorite" CFS/ME/FM expert?
Definitely Jay Goldstein (I wrote the Wikipedia article linked here). He is absolutely brilliant and has a fantastic grasp on neuropharmacology. Even Betrayal by the Brain which was written over a decade ago is still ahead of its time!

I also deeply respect e.g. Paul Cheney and Byron Hyde, and of course people like Elizabeth Dowsett and Melvin Ramsay. When it comes to fibromyalgia, Robert Bennett is one of the leading researchers.

Why a broken marionette?
My cover artist Stephen Caissie, a Canadian AD came up with this design for the Finnish version of the book and I instantly liked it. For me, a broken marionette can represent many different aspects of these illnesses: pain, lack of energy and the general feeling of being "broken" and dysfunctional. Also, it can be taken as a metaphor for the assumed central (neurologic) nature of the symptoms - if the wires are cut, the marionette cannot function.

Does the book include information about side effects and drug interactions?
Yes. All the most important side effects, risks and drug interactions are listed. There is also an appendix which explains drug interactions and how even some foods and herbs can cause potential interactions.

Are the prices of the drugs listed?
I have included information about the prices. They are described verbally, such as "very inexpensive", "fairly expensive" or "extremely expensive", as well as "X is cheaper than Y". I have not included specific prices for several reasons: a) they vary widely between countries and sometimes between different pharmacies, b) they are subject to change and many would be outdated by the time the book goes to print and c) the doses of many medications can vary ten-fold or even more, which obviously affects the cost of the treatment.

Is there a glossary?
Yes, there is a glossary (and an index as well), though most concepts are explained in the text.

Why are there no alternative/complementary/holistic treatments listed?
There are several reasons. When I started writing the book in Finnish, it was largely meant for doctors - as I was maintaining a website for CFS/ME which already had plenty of information about herbs and supplements, I figured that people could read the information there, but they'd need more information to be convince their doctors to give them prescription drugs. Also, many doctors would find the book more convincing if it was just medications, no alternative treatments.

The second reason is that I had already written the book in Finnish, including just pharmaceuticals. Had I included other treatments too, it would have taken me a lot longer to finish this one. If this book does well, I might write one dedicated to alternative and complementary treatments in the future.

Does the book endorse cognitive behavioral therapy/graded exercise for CFS/ME?
No! This is a book about pharmaceuticals. No treatments are included but medications. The introduction does explain that these therapies have been endorsed for CFS/ME with false information, and that mildly ill people with CFS/ME can exercise, but should do so with extreme caution to avoid relapses.

Why are there so many medications listed? Isn't that just about every drug in existence?
It does sound like a lot - and it is a lot, but it isn't nearly every drug in the world. You'd be surprised to know how many medications are out there, though many of them have a limited availability. I have not included nearly all of e.g. the benzodiazepines and non-steroidal anti-inflammatory drugs, because there are so many of them. No chemotherapeutic drugs are included.

Does the book contain information about treating symptom X?
Most likely it does. See the symptom list.

Who was Kathleen Walker?
Kathleen was a woman I knew online, a long-time sufferer of CFS/ME with a colorful, lively personality. She was in intractable pain and was constantly trying to find treatment that worked. As she put it herself, she loved life, but hated the way her life had become. She died by her own hand in January 2004. I did not know her well, but I am haunted by the thought that had I only known as much about CFS/ME as I do now, I probably would have been able to help her.

Why should I buy this book if I already have several books about CFS/ME or fibromyalgia?
There are many reasons, but the most important one is that no other book contains a nearly as conclusive take on medical treatments for CFS/ME and fibromyalgia as this one. Even if you've read a dozen books on the subject, you will still learn many new things. This book helps you understand how the medications really work, their similarities and differences, how to choose the right medications to try and what kind of possible side effects and drug interactions they have. Not only that, you will be able to understand your illness and symptoms better.

Also, if you not located outside of the United States, you will be happy to find that the book gathers for the international audience, listing availability and prices for medications elsewhere and also listing many drugs that are not available in the U.S.

The medications

Can you give some specific examples of medications listed in the book?
Sure. See this list for 50 examples.

Why is medication X missing?
I have not included every single medication in a general category (such as benzodiazepines or NSAIDs) if they are very similar pharmacologically. I have excluded medications with very limited availability, except for some that present a novel mode of action which cannot be achieved by using another drug.

How many medications am I going to need?
Most people probably need 2-5 medications for optimum benefit. Some can get a lot better with just one, others may evem need a dozen. A lot depends on how many symptoms you have, how severe they are and whether you're on any non-pharmaceutical treatments.

Will the medications cure me?
It depends on the definition of "cure". If that means being able to stop all your medications and be 100% healthy, that isn't likely (though it can happen). Antimicrobials have cured some lucky people. Some people are able to stay 90% or even 100% better if they keep taking their medications. Others have reported that they have been able to go off their medications after a few years and still stay well, even if they aren't completely back to their old selves. I don't think it is realistic to expect a full cure, but most people can get markedly better.

Is the damage caused by this illness really reversible?
Most of it does appear to be.

How much improvement can I expect?
It depends on whether you have CFS/ME, fibromyalgia or both, how ill you are, and how many medications you (and your doctor) are willing to try (and can afford). A lot of it is also due to luck. You might be lucky enough to try one medication and get 95% better - it does happen - or you might try 20 without benefit, but most people fall somewhere between these.

I do believe that most people with fibromyalgia can get at least 90% better. With CFS/ME it's probably 70-80%. It's probably less for most of the very severely ill, but even 30% improvement can be life-changing if you're very disabled. Children and those who have only been sick for a short time have better odds than adults and may get fully well.

What if I am very sensitive to medications?
I am well aware that many people with CFS/ME are very sensitive to medications. However, there are some medications that usually even the most severely ill patients can tolerate. And sometimes even people who cannot seem to tolerate any medication can tolerate something that others can't. For example, a good friend of mine has severe CFS/ME and cannot even tolerate some vitamins, but she was able to take a fairly high dose of an SSRI for several years (unfortunately it didn't relieve her other symptoms besides the secondary anxiety and depression) and is able to tolerate Lyrica.

How do I know which medications to choose/which ones are appropriate for me?
I have tried to include as much information as possible to help you and your doctor to choose the medications that are most likely to help people with certain symptoms (or lacking certain symptoms/characteristics), men or women, those who are mildly or severely ill and those who have reacted positively or negatively to another medication.

Which symptoms are the easiest or hardest to treat?
This is a difficult question. Generally all symptoms can be treated very effectively in most cases and there are many options for most symptoms. I feel like many neurological symptoms and hair loss are the most challenging ones to treat, but not hopeless by any means.

Availability

Can I get the book as an ebook/audio book?
You can buy it as an ebook, which is a normal unprotected PDF (Adobe Acrobat) file. If you have a screenreader, it should be able to read the book for you.

Can I buy the book in a bookstore?
You might be able to. With enough requests they might place an order. You'd probably have more luck at an independent store than with the big chains. If you can help my book get into the local media, that would help enormously.

Can I borrow the book from my local library?
Most libraries are willing to order books if they are requested. It doesn't hurt to try. One small Finnish library even ordered multiple copies of my book after just one request. If your library refuses to, you could donate them a copy. Usually they won't turn down the offer.

Can I buy the book without having a credit card?
You can buy the book directly off me, but I cannot accept cash or checks (cashing a check in foreign currency is prohibitively expensive here). If you live in an EU country, you can wire transfer money directly to my account, with negligible transfer fees. If you don't, email me anyway and we will figure out something.