I guess be glad Rocky Mt. Oysters weren't on the menu.

Dear Liz,

I wanted to take a moment to respond to some of your negative advocacy postings and that of some of your friends as I read it regarding ECT.

While I am in alliance with you and your buddies regarding informed consent I’ll go further by adding that which I’ve proactively advocated through many years of mental health activism and that is education and encouraging hope and persistence and collaboration with one’s trusted, caring, knowledgeable and licensed health care practitioner(s) in order to make informed and un-coerced medical decisions.

I’ve read some of your writings, some of Ms. Linda Andre’s and much more of those of Ms. Juli Lawrence’s and that of a number of forums and blog sites. You folks all seem to have one theme very much in common. That is you all tend to write, as I see it, from a negative advocacy. You all tend to find things wrong with therapies, people and the system, not that I’m saying that you or your friends are necessarily wrong in all cases. I would guess negativism and sensationalism sells better or draws more attention.

I’ve read and commented on CL PSCH’s forum several times and while I find his dialog and several of the other medical professional blogs extremely interesting I’ll put it to you similarly as I’ve done with them. Now that I’ve read your negativism about Fink and ECT how about sharing your positive medical experiences to help those who suffer from serious mood disorders acquires positive results to their treatment(s), establish control, stability and longer-term remissions over their illnesses.

Yup, there are improprieties and lack of disclosure all over whether it is in the highest branches of government, the bureaucracy that controls our medical systems, researchers who supply the data from the studies we read as well as some of the doctors who attend to our health care and those who may blog on the Internet.

The point is as I often share in my commentaries, there are doctors, good doctors and better doctors and when a doctor hangs out his shingle to practice it does not state if he/she graduated the first or last in the class or if they will or will not be financially compromised. The effort should be made to find the better doctors and those who paid attention and graduated in the top of their class and who are concerned and caring for their patients.

So while you guys take the time and bytes again and again to repeatedly vilify the likes of Fink, Sackeim et al which by now is old hat, at least to me, I’ll share the fact that my spouse’s attending physicians have through the years willing and forthright shared information with us whether prompted by our questions or otherwise and they have shared known side-effects of ECT and the questions in their own minds that still remain as to the mechanism of actions etc.

I am a relatively informed support person and health care advocate and I have preferred to share on the side of our experiences, research and knowledge from a pro-active and positive advocacy and activism and unlike many who I refer to as “the bitch and moan” folks I could easily spend much time lambasting Lamotrigine as an example for causing the side-effects it had to my spouse. I think I am more understanding and knowledgeable than you seem to be as a patient to also understand that the same drug or in the case of ECT it has also benefited others. I was knowledgeable and prepared with Lamotrigine yet we still ventured forward in the hope that drug would benefit my spouse. It didn’t. It did cause major side-effects and distress. I have shared my spouse’s experiences with the medication, when appropriate, but I have not vilified the drug.

I am an advocate not only for existing treatments such as ECT knowing the potential devastating side-effects of ECT and a number of drugs but I have also spent considerable time advocating for newer therapies. The fact is there is a large and unique population of seriously ill and disenfranchised MDD patients for which many of the current treatments have proven ineffective or short-lasting.

So how about sometime sharing and discussing all the wonderful treatments and therapies that have benefited you all these years and maintained your long-term remissions or those you haven’t tried but are knowledgeable of or is it easier to be negative and destroy than it is to be positive and to build?

Warmly,
Herb
VNSdepression.com

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Liz has stated before that she's not completely against ECT because she knows it DOES benefit others. She has also talked about what has worked for her in her videos. Please don't automatically put Liz and people who agree with her in the "bitch and moan" category. Although you didn't directly say that, you seemed to be suggesting that with the tone of your comment.

At the risk of being accused of bitching and moaning I was told that the only thing left for me was ECT. I struggled with MDD for years. I've tried drug after drug after drug. I asked about the possibility of permanent memory loss from ECT and these risks were downplayed. I understand that is not everyone's experience. I worry about forced ECT on the woman in NY because I realize that had I lived in NY the story could have very well been about me. She doesn't want it. Why isn't anyone listening? For those that willingly sign up for this, I am not opposed. I support an individual's right to choose their course of treatment. We all have the right to our opinions. Now, if only someone would listen to Simone.

At the risk of being accused of bitching and moaning I was told that the only thing left for me was ECT. I struggled with MDD for years. I've tried drug after drug after drug. I asked about the possibility of permanent memory loss from ECT and these risks were downplayed. I understand that is not everyone's experience. I worry about forced ECT on the woman in NY because I realize that had I lived in NY the story could have very well been about me. She doesn't want it. Why isn't anyone listening? For those that willingly sign up for this, I am not opposed. I support an individual's right to choose their course of treatment. We all have the right to our opinions. Now, if only someone would listen to Simone.

Herb,

Despite losing my kidneys to the MH system and my PTSD getting much worse due to psychiatric labeling, I will share this positive story with you. I started seeing a clinical psychologist 7 years ago, when I started I was in very bad shape and on a mood stabilizer that wasn't helping one bit. I had been hospitalized right before I started seeing her, 3 times in 12 months in fact. Since I started working with her I have not been hospitalized once, I have been taken off mood stabilizers for good, been re-diagnosed at PTSD rather than Bipolar 1 and PTSD, and have managed to cope with ongoing medical traumas without losing it despite the fact that medical trauma in childhood was the trigger for my PTSD. So yes, psychotherapy with a caring and skilled and well trained professional can work very well.

Coincidentally, ABC News just recently produced a good article about this subject:

http://abcnews.go.com/Technology/story?id=3397685&page=1

Dear Alison,

I couldn’t be happier for you than to read that you’ve obtained efficacy and wellness and even more importantly by way of talk therapy; certainly a non-invasive and non-medication means to help control one's illness is the first approach I would consider and share by way of education from our experiences.

While you also have searched and utilized what I refer to as the “Trial and Error Approach to Wellness” so too has my spouse and me. About 44 years of battling her illness has taken us from holistic approaches, talk therapy, the pharmacopeias of medications as well as total abstinence of all treatments, ECT, VNS and then some. What is important to me is not banning and/or denouncing any therapies but sharing one’s experiences both positive and negative in the hope that others may learn and possibly benefit.

When one reads from the link provided by Kent’s posting above is the likes of David Oaks and the Peter Breggin’s of this world denouncing and calling for the banning of ECT which has in fact benefited individuals and yet their continually omitting their sharing of solutions to the medical challenges my wife and others have experienced strongly bothers me. If individuals like these had their way, there would be no therapies or treatments. As one experiences and learns the seriousness of mood disorders one learns there is no one treatment or therapy that can benefit all just as one also learns that the use of labels taken from a book, the DSM IV, is anything but scientific and the diagnosing of these illnesses at the moment cannot be quantified or tested through X-rays, MRI, blood tests or the like but we do the best we can at the moment with what we have.

Like you, my spouse over the years received several psychiatric diagnoses and did not respond well to medications. Unlike you she has no situational issues to account for her MDD and while she has utilized psychotherapy for many years it is totally ineffective in maintaining or preventing or improving the periodic relapses in her mood state. On the other hand VNS Therapy has proven for her to be “pretty remarkable” in establishing a 3 year period of a continuous depression free state without the use of any psychotropic medications for purposes of depression and over the last 4 years she’s had several brief relapses only to be quickly aborted through the adjunctive use of ECT either through a single or a brief series of 3 bilateral treatments. So when one compares her 37 year history to the past 7 years the quality of her life and that of mine has been “pretty remarkable” as well as improved.

The point being, I’ve read some of the writings of Breggin (a self-promoter and not a researcher), Breeding (a Ph.D. and not an M.D.), Oaks and the others and I strongly disagree with their positions on banning ECT. Breggin also doesn’t write about his failures especially knowing as I do of several patients that had no success with his treatment either.

As research continues to come forth I personally believe more and more in the bio-neuro-chemical theories of the malfunctioning of the brain whether through a genetic predisposition to these very serious illnesses or one caused by situational stresses of various kinds affecting the proper development of the neuronal networking of the brain.

I am also reminded of the fact that placebo also has beneficial effects upon one’s mood disorder.

So while the science of the brain, in my opinion, is still in its infancy I am for utilizing whatever therapies are available with the understanding one should be educated when making informed and un-coerced medical decisions with a trusted, caring, and knowledgeable and licensed health care practitioner(s). Almost all the available treatments come with potentially serious side-effects but this should not be a deterrent to trying to prevent suicide or suicidal ideations and improving one’s quality of life over these illnesses.

I wish you continued success and wellness and thanks for sharing what is working for you.

Warmly,
Herb
VNSdepression.com

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