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Archive for October, 2007

What the Wiki??

Posted by Roberta Jewell
Categories: This 'n that

I love the Wikipedia concept: an online encyclopedia developed as a collaborative effort, editable by any and all Internet users. Because of its large number of volunteer editors and rather stringent policies, Wikipedia is generally considered as accurate an encyclopedia as any other. One of the benefits of this ‘living’ encyclopedia is that new information can be added continuously. Or so I thought. As it turns out, I had an opportunity to see the Wiki sausage being made and I’ve got to tell you, it was not very pretty. Here’s what happened:

Several months ago, I submitted an article explaining My Way Out to Wikipedia. I wanted to supplement existing entries about alcohol recovery treatment, most of which described traditional, mainstream programs like 12-step and inpatient care. I figured it made sense to add information about ours, as it is now considered a valid, stand-alone therapeutic approach. By this time, thousands of people around the world had adopted it. Many clinicians within the medical community had embraced it. We were finishing up work on a utility patent for the program. And last year, one of the largest media conglomerates on the planet attempted to acquire rights to our book because of their interest in the unique nature of our approach. I’m not bragging, I’m simply stating why I felt there was adequate interest and justification in placing a simple article in Wikipedia about this new alcohol recovery option. So I wrote and posted an overview, attempting to match in style and tone entries on similar topics.

A few weeks later I checked in and noted my entry had been deleted. I was new to Wikipedia but soon learned that because My Way Out might be considered controversial or commercial, someone (a “competitor” or an individual opposed to the approach) may have lobbied an editor to have it removed.

Commercial I could almost understand–we do have an online store; it’s our primary means of selling and distributing our book. But anyone familiar with our program knows we have always urged individuals to purchase products from whatever source they wish–to find the highest quality goods at the best price possible. I had certainly not promoted the health store in my article; in fact, I had taken painstaking efforts to write the piece in the most objective manner. The point in explaining the program was to encourage alcohol dependent individuals to consider a multi-faceted approach because it had not been formally introduced prior to our program. In a nutshell, we promote a blended therapy that includes a specific regimen of nutritional supplements (vitamins, minerals, amino acids and herbs); anti-craving medication if appropriate; self-administered hypnotherapy; light exercise; and a change in diet. It’s a powerful, comprehensive system and it tackles alcoholism much like you do diabetes, with medicine, nutrition, and behavior modification. In addition, we believe support is important–it can take place in face-to-face meetings or online, whichever an individual prefers. The program is highly customizable and that’s one of the things that makes it very popular. Some drinkers adopt My Way Out to achieve total abstinence while others seek moderated drinking.

So I had tried to¬†explain the program, but perhaps I hadn’t done so with proper objectivity. Or I hadn’t adequately addressed the controversial aspects. However, isn’t that the nature of much new science? Our program is founded on the work of some of today’s most respected specialists in addiction research; men and women whose work has been published in prestigious medical journals. Didn’t we deserve an opportunity to share this? Were other innovative medical treatments excluded from books of learning or was ours somehow different because of the stigma associated with alcoholism?

This seemed the ultimate irony to me. This was the public’s encyclopedia, yet our voice was not to be heard. Nor was I allowed to share a program with those who most needed help–those who had suffered for so long but could not find help and would not find help if Wikipedia had anything to say about it.

So I started over. I assumed I must have done something wrong and that it was simply too difficult for me to be objective. Perhaps I was not able to describe without passion a program for which I felt so passionately. I decided I must hire an expert. I searched until I found a writer and designer (yes, you “design” the articles) who were well versed in–of all things–writing for Wikipedia. They told me, that indeed, Wikipedia had become a fickle task master but they were confident given the legitimacy and success of our program we’d have no problem.

Several days later, after much back and forth, the writer presented me with a brilliant article. It was Wiki dry, objective, and rife in citations, sources, and references–many more than my original–plus a design to match that of the respectable Alcoholics Anonymous entry that had clearly gained immediate access upon entry. I could not have been more pleased. The designer went to work and submitted our article the following day.

The next morning I receive her email. “You won’t be happy to hear this,” she wrote. “The Wikipedia editor deleted the article. They consider it spam.”

Just like that.

I have come to believe that Wikipedia has made its redress process so incredibly cumbersome and painful to an average user that they understand you will simply give up and go away when your article is rejected. But I had to know why this had happened. Again. Why?

Perhaps I’m jumping to conclusions, but it seemed fairly easy to figure out. I looked at the name of the editor who so quickly dismissed the article and read his bio. As luck would have it, our submission landed on the virtual desk of an editor who happens to be–of all things–a physician from the UK. (He boasted, as well, about his status as a bureaucrat.) But when I learned he was a doctor I thought of the many dozens of messages and emails I’d read from members of our online community posting from the British Isles. Patients excited about the prospect of overcoming their drinking problem with My Way Out, but who had left their doctors’ offices in despair. They were not given anti-craving medication upon requesting it; they were often told the program was without foundation; they were provided little to nothing in terms of help or support. This happens all over the world, of course, and I know there are many caring, compassionate and enlightened British physicians. But I have noted what appears to be a disproportionate number of patients in the UK who are simply unable to find help. There, where alcoholism rates continue to soar. I have even heard from some who tell me they have actually lied to their doctors, claiming to suffer from migraine headaches, so desperate are they to receive an off-label prescription for the anti-craving medication, Topamax.

So what to do. Wikipedia encourages authors to contact individual editors in cases like this. So I did and I pled my case. Dr. Bureaucrat never wrote back. I emailed another editor, asking him to override the decision. Again, nothing. I wrote to a third requesting my article be temporarily re-instated so it could be reviewed by a supervisory team. It was not–instead I received an esoteric message in support of the original decision.

I have come to reassess my opinion of Wikipedia and must wonder how many other articles arrive DOA or are colored by the opinions of the selecting editors.

There is a silver lining to this story, however. As I looked around, I found a new resource called “Wiki How”. It’s unrelated to Wiki. The format is less formal and it presents itself as a “how-to” manual. Interestingly, some articles posted there are ranked even higher on a Google search, at least this week. Which means it may be easier for those who are looking for information about our program to find it.

So I decided I’d cut my losses and write yet another article. A number of entries already existed, including “How to Quit Drinking”, “How to Quit Drinking without AA” and “How to Get Sober with a 12 Step Program”, so I focused on “How to Quit Drinking Alcohol Using Anti Craving Medications“. I figured I could write about an important component of our program and one we are often asked about, while including many of the same citations I listed in the original article.

Do me a favor: go check it out and provide some feedback. I invite you to participate in the discussion, add links if you like–you may even edit the article if you have valid content to offer. By contributing, you honor the true collaborative concept upon which Wikipedia was founded–but to which it apparently no longer subscribes.

We’ve come a long way in two years

Posted by Roberta Jewell
Categories: Medications and research

It’s been interesting, this past week, watching the plethora of news stories roll in about Topamax and its potential for treating alcohol dependence. Patients of the My Way Out program have known about this for over two years. I based my book and the therapy I developed around Dr. Bankole Johnson’s 2003 clinical trial as published in The Lancet. It’s always puzzled me that outside of our program and the esoteric work of addiction specialists, his original breakthrough study didn’t gain more notoriety among physicians and their alcoholic patients. We’ve found it to be an extremely effective medication for many alcohol dependent individuals, particularly when it’s used in the context of a multi-faceted program with nutritional supplementation, exercise, behavior modification and support.

So…fast forward four years and here we are. Topamax, does indeed curb the desire to drink. In the meantime, other medications including Campral, Revia, Acomplia, Baclofen and Chantix have also been introduced and found helpful.

Research takes time. I get that. I understand it’s important we adopt rigorous standards when testing new meds. We need to ensure objective results and safeguard those who will eventually trust their health to those remarkable little pills that dance on the receptors of our mid-brains.

But like many people, I wanted results faster than science was willing to offer. It’s one of the reasons I grabbed the research at hand and ran with it. I mixed it up with some rather non-traditional strategies–at least at the time–and incorporated elements from the far East, including kudzu, an herb known by practitioners of Traditional Chinese Medicine. They’d used it for hundreds of years to blunt alcohol craving, so I did too. It has since been proven effective in human studies in the west and is only one of several important nutritional supplements to help detoxify and heal the body while addressing addiction.

I looked also at what holistic medicine had to offer and added hypnotherapy to the program. It’s a powerful tool in overriding old habits while overpowering drinking triggers. Exercise and nutrition were equally important as elements of this newfangled system.

Then came the technology. The online forum. The place to meet for those lab rats brave enough to try all this out. It’s also where much of the magic happens. Even a traditional alcohol recovery counselor will tell you that success in sobriety is very much dependent on a support system. Thousands of people from around the world have found that very thing at My Way Out’s message board and I’m very proud of what happens there each and every day. The support, camaraderie and information sharing are unparalleled.

Our members are often individuals who will not attend face-to-face 12-step meetings. For them, we offer a safe, anonymous and supportive alternative. That is not to say our site is mutually exclusive of local meetings or sponsors. Those are often lifelines for individuals in recovery and in fact, our members sometimes encourage others to seek help at a community AA or Women For Sobriety meetings. We are all about choice.

So what’s next? I certainly have no shortage of ideas. The same is true of Dr. Linda Garcia, MD, the Medical Director of My Way Out, who is called upon to speak about the program, and does so throughout the United States. We have found that health care providers are eager to learn about effective new strategies in addiction treatment, particularly those that are inexpensive and easily managed. This is certainly the case for MWO, which can be administered by any prescribing clinician.

I’ve learned much since writing My Way Out, and to be honest, I do not aspire to write another book (having never aspired to write the first!) because the process simply takes too long. But I do have much to say.

My goal is to continue to refine the MWO program to help ensure individual success for everyone who seeks help by it. I want to provide specific resources in terms of research, motivation, products, and guidance that will not only give people hope that they can overcome their alcohol dependence, but will guarantee their success. We don’t use that word–guarentee–in this “industry”. It’s not allowed. But I don’t care. Because I think we have to continue breaking rules if we want to win this battle. We have to see ourselves healthy and know it will happen before we take that very first step. In my heart, I am convinced that is just as important as any pill that any company will ever develop.

If you don’t believe me, just go to the forum and read the posts of those who have followed the program, or modified it to their needs, and take note of those who are now posting about their success. Notice their user names. Observe their “mood” icons. Read those messages. Feel that energy. You’ll see a pattern, I promise.

That’s not something I wrote about in my book. But it’s equally important. Those individual teach all of us something. And they reminds us of just how far we’ve really come.