From: V.V.S.Ramakant
To: adhd-india@yahoogroups.com
Date: Sunday, January 4, 2009 10:06:28 PM
Subject: Re: [adhd-india] Re: Need information on ADD tests
Dear All,
Wish you all a very Happy New year.
I wrote my first mail to this group on Nov 5th. I gave my background of being an adult with ADHD and kid who grew up untreated. Please take this mail with a pinch of salt and use your own judgment to make any conclusions.
Ms Pera has been giving us a lot of information over last many months. I used to think of her as someone who has the best interest our kids in her mind even though the vehemence with which she opposed alternate treatments for children with ADHD and using Michael Phelps as a role model puzzled me. What made me change my mind now is a bit of internet research I did today after being shocked at Ms. Pera’s mail in response to Bobby’s in which she displayed blatant disregard for the works of Dr. Hallowell (referred by Ms. Pera as Hallowell, a rather rude way of addressing a medical doctor) by calling them “distraction” books. According to her he is not a "researcher" and failed to include some important caveats in his book. Someone called David Rabiner PhD apparently does a reliable job. I was deeply hurt and shocked by these statements. I have spent the last one year rebuilding my life and reading a lot about ADHD and was particularly helped by Dr. Hallowell’s work and so have many others. By the way, the first one of the “distraction” books sold more than a million copies as of 2005!! (http://www.booklounge.ca/author/results.pperl?authorid=11641)
I started today by first seeing the two “solid” sources of information Ms. Pera gave all of us. – The sites of the "reliable researcher" David Rabiner PhD and an organization called CHADD. I researched all these and found that there are some “caveats” not mentioned in Ms. Pera’s mail like the conflict of interest (entirely my opinion) raised by the following facts –
- Ms. Pera is a volunteer for CHADD
- David Rabiner Ph.D was on the Professional advisory board of CHADD
- CHADD is partly funded by Novartis (formerly Ciba-Geigy) which makes the stimulant medication for ADHD called Ritalin (sold in India as a generic called Addwize)
Then I researched what is the opinion of Americans about CHADD. I found a relevant article on a website which I read a lot during my early stages of recovery. The article is titled - The Problem With CHADD and "Accommodations" and can be found at http://borntoexplore.org/chadd.htm Please do read this article. A very relevant portion is mentioned below -
“ CHADD omits the many positive and alternative views of ADD held by researchers and experts in the field of ADD. If you look at their website, you will find no mention of anything at all remotely positive about ADD. CHADD is supposed to be an advocacy group. But what CHADD seems to be advocating is not the people who are ADD, but rather the concept of ADD as a severe brain defect. If CHADD was an advocacy group for people who are ADD, then it would spread the news about ADDer's positive attributes far and wide. It would encourage teachers to recognize different temperaments and learning styles and provide creative hands-on opportunities for ADD children, push for smaller class size, advocate alternative schooling, recommend that children be given creativity and IQ tests as part of their ADD assessment, and so on.
Instead, CHADD is pushing for special accommodations by schools and employers under the American's With Disability Act. This issue is particularly dangerous for those of us who are ADD. A backlash has already formed against ADDers because of the special accommodations which a few people have been demanding under the law. For example, prospective ADD attorneys get extra time when taking the bar exam, and employers are now afraid of having ADD employees on their payroll because the law requires them to make "reasonable accommodations". I suspect the majority of people with ADD do not want such special treatment. Moreover, it endangers the careers of ADDers, many of whom are doing just fine. It's a small world, and word of an employee's ADD condition can spread quickly within someone's field, making it hard for them to find a job. I find the law insulting, quite frankly. I don't need extra time to take a test (I have the opposite problem - I rush through tests), or any sort of special accommodations by my employer. I am not disabled, I just think differently.
CHADD is partly funded by the manufacturer of Ritalin, CIBA-GEIGY. They swear their agenda does not reflect this. But when you see how incredibly biased their agenda is towards ADD being a "defect" which requires medication, it's pretty hard to believe they're not being influenced by pharmaceutical companies. “
I found a few more articles which are quite critical of CHADD.
After that I researched a bit more about Gina Pera and found her on the comment pages of many articles which had anything positive about ADHD. She always called them dangerous. An example in the New York Times where the authors talks about Michael Phelps and Dr. Hallowell is here - http://well.blogs.nytimes.com/2008/11/24/michael-phelps-and-the-potential-of-adhd/?apage=1#comments
****Gina Pera says in her comment - I’m sorry, Tara, but this is far from a “new view.” Hallowell has been promoting this idea for years now. And while it might have helped the public to view ADHD in a more balanced manner — which is a wholly good thing — it’s also caused too many parents to eschew medical treatment for their children with ADHD. This, tragically, can result in heart-breaking outcomes. Too often, this is simply not a helpful message; it is a pandering, damaging one.
To which the author replies - FROM TPP — None of the people I spoke with believe (nor does the story suggest) that this more positive model of ADHD means giving up medication as an option. Dr. Hallowell does not advocate foregoing medication and offers it as one option for children and their parents. As the story notes, he now is even a paid consultant for a pharmaceutical company that makes A.D.H.D. drugs. Michael Phelps is certainly a new dynamic in this discussion, and his superstardom certainly does raise new questions about how this is playing out in the ADHD community. I have consistently asked readers not to use hte blog to promote their books. If readers are interested in yours, they can google your name or find you on amazon. ****
There are a few more unflattering comments about Ms Pera’s views in the same comment page. Dr. Hallowell and Michael Phelps endorse McNeil Pediatrics, a much smaller company and a competitor of Novartis in the ADHD segment.
Now I want to talk about what she said in a mail in response to Rachna Singh’s querry about Attentrol.
****Gina Pera says - I just researched Attentrol and found that it is atomoxetine (generic name for what’s sold in the US as Strattera). This is a non-stimulant, and was heavily marketed as such, the implication being that stimulants are dangerous. (It’s pretty easy to exploit people’s fears and ignorance in this area.)
Actually, the stimulants are still the first-line medication for ADHD. And, despite the marketing campaign, Strattera didn’t have quite the success its makers planned. It also has a higher side effect profile than the stimulants.
Anecdotally — from conversations with dozens of people who’ve tried it and other Rx — atomoxetine in smaller doses seems to help with mood (an often overlooked problem with ADHD) but not so much with other ADHD symptoms. But, because it builds up in the system rather than wearing off each day, it can provide a good foundation for the stimulants, which provide more focus. As with most things ADHD, reactions are highly variable. There are some people who will find it helpful as a standalone Rx, but they seem to be in the minority.****
Again Ms. Pera seems to be promoting stimulants and trying to downplay the effectiveness of any alternatives. The following forum in which users talk about Strattera/Attentrol and stimulants will make interesting reading http://www.adhdnews.com/testforum/test655.htm
I have used Attentrol for more than one year. My psychiatrist started with 40 mg/day and I was tested for liver functioning during this phase to make sure that the drug does not affect my liver. Then it was raised to a target dose of 80 mg/day and I was reviewed after 4 months. I had started experiencing positive effects from the first month so we continued the same dosage. On 19th of this month I have an appointment with a German psychiatrist for obtaining a prescription which is valid in Germany, where I am currently staying.
My personal opinion about stimulants and non-stimulants is that they both have their advantages and disadvantages. Their makers should allow the doctors and patients to make an informed choice and not try to force them down by playing a game of fear mongering. “Anecdotally”, Ms Pera becomes a part of the fear mongering when she uses scary terms like danger, peril and snake-oil while referring to the scenarios of taking alternatives to the product offered by the company which pays for the organization that she “volunteers” for.
To finish I would like to give the link to my Myspace profile which I made in the last few weeks – http://www.myspace.com/hunter_at_work Please overlook the photo show in it, I put it purely for show-off, the rest of the content has many links relevant to my ADHD experience. Please do see them and don’t miss my photo next to the space shuttle in the photo show :-)
I am sure by now Ms. Pera would be quite agitated. I am eager and willing to defend myself against whatever she has to say in response to this mail. I have nothing to fear and nothing to hide.
If any member in the group (except Ms Pera of course) does not approve of the manner in which I handled myself in this mail, I will send an apology immediately.
Take care.
With best wishes,
Ramakant