Thank you for your kind words Herb and I am glad that your wife is doing so much better.

But I think you are unfair to David Oaks and MindFreedom. In fact they and he do propose alternatives and had an entire conference on alternatives this month. And David has worked with a new program in Oregon that allows consumer/survivors to manage their own treatment/resources plan, not sure of correct name, with help from a peer/csx to choose what will work for them from what is available in their area. This is a fine approach I would love to see implemented all over the country.

I am not a Breggin fan, I found his comments on people labeled bipolar offensive in Toxic Psychiatry. He basically wrote a whole group of folks off as obnoxious and said he would be tempted to force medicate them while at the same time deriding those who use mood stabilizers as taking the easy way out and avoiding their problems. I don't find deriding anyone's choices helpful, especially coming from a doctor.
We might never agree on ECT, frankly it scares the heck out of me, as does VNS, but if someone is desperate, well I would let someone with Lou Gehrig's disease try any dangerous treatment they wanted to frankly so who am I to judge?

I do think informed consent to ECT is extremely rare and the possible effects of VNS such as loss of the ability to speak need to be highlighted for anyone considering it. Also the fact that it has never been proven to be effective in any trial.

Again, I am very glad your wife and you are in a better place however you got there and I hope things stay good for you both.

It's really scary Herb that you wife has to undergo all these risky treatments so you can have a better quality of life. You must be so proud!

In light of this comment, I reread the ABC News report on ECT. As far as I could tell, there was nothing in there about David Oaks calling for a ban on all ECT. In the comments section, he said the following:

"...what about forced electroshock? We told Ms. Morency about heart breaking cases of involuntary electroshock over the expressed wishes of the subject. Surely we can all agree that giving such an intrusive and potentially irreversible procedure over a citizen's objections violates core values."

I think most propenents of forced ECT realize that their position is morally indefensible, so they try to paint all opponents of forcing ECT on those who don't want it as advocating for the procedure to be banned entirely. It is a lie to equate oppostion to forced ECT with opposing it even for people who want it, and I think it borders on being libelous to say that advocating for informed consent is the same as advocating for a complete ban on the procedure.

Kent,

I’ve not followed David Oaks and his movement for some years but make no mistake about it some 9 years ago when I came across the likes of Oaks and I communicated with him and his followers they were all advocating for the banning of ECT. Listed below is a little quote from Oaks’ apparently updated website which I’ve not reviewed in years.

“Oaks, now 48, is executive director of MindFreedom Support Coalition International, a Eugene, Ore.-based umbrella group for the "Mad Pride" movement. The grass-roots campaign, also known as "MindFreedom," includes so-called psychiatric survivors and dissident psychiatrists who reject the biomedical model that defines contemporary psychiatry. They say that mental illness is caused by severe emotional distress, often combined with lack of socialization, and they decry the pervasive treatment with prescription drugs, sales of which have nearly doubled since 1998. Further, they condemn the continued use of electro-convulsive therapy -- or ECT, also known as electroshock -- which they say violates patients' human rights.”
…………………………………………………………………………………
“Oaks considers ECT "barbaric," with a high relapse rate, and notes that it often causes memory loss. He says that, in certain situations, ECT is administered without patients' consent.”

http://www.mindfreedom.org/kb/act/2003/mf-hunger-strike/hunger-strike-media/LA%20Times/

Maybe it’s just that you don’t go back 9 years or more to read many of their original positions and writings. Ms. Juli Lawrence who runs the ECT.org website is also one of those individuals but in her case she has changed her position on ECT although these folks did at one time advocate banning ECT as a therapy option.

Unlike them I have always been a proponent of treatment options and informed choices and by way of background I was also a former President, Board Member and trained facilitator for a local chapter of DBSA. Add to which I also had a state appointment as a Guardian Advocate which amongst its assigned responsibilities was to protect the rights of those individuals unable to advocate for themselves.

I too am opposed to the use of force but the aforementioned individuals did oppose ECT at one time or another. I’ll leave it up to you to research their current positions.

Alison, I’ve not followed recently the position or writings of Breggin either but I do find your statements relating to him interesting in view of our discussions relating to ECT and there is a smirk across my face and a chuckle in my voice. For a price, paid in advance, Breggin will travel and offer up his expert testimony on ECT otherwise don’t count on him.

As I’ve stated, I’ve not followed Oaks or his organizations recent positions or writings on any matters.

Unlike you, I do not agree from my experiences both personally and as a facilitator that “informed consent to ECT is extremely rare.” To the contrary, those with whom I’ve discussed the treatment all did so with varying degrees of knowledge at the suggestion of their attending physician(s) and were not forced or coerced.

I also take exception to your knowledge of VNS. There is both printed manuals and similar matter available on the Internet describing most all side-effects from VNS Therapy and while temporary voice alterations are one such side effect the side-effect of the total “loss of the ability to speak” is extremely rare from my knowledge and would be a result of surgical error and not the therapy.

“Also the fact that it has never been proven to be effective in any trial.” --- Alison Hymes

I would also have to disagree with your statement but that is for another time and place although I would share with you the position and comments of several hundred of the leading researchers and professionals in the field both as to how they read the study results and why they feel this therapy should be another tool in the physicians handbag.

http://www.vnsdepression.com/p7-00_lettersfromthemedicalprofessional.htm

Your good wishes are much appreciated as we maintain our constant vigilance over “the beast” knowing full well that “the beast” is controlled, stabilized at the moment and once again in remission but my spouse’s illness is not cured by my definition of “cure.”

Warmly,
Herb
VNSdepression.com

.

I am pretty sure that "so-called" is not a quote from MindFreedom's website. I went and looked for their mission statement and pasted it in below. I'm not sure why you are so hard on MindFreedom, I'm quite sure they have never interfered with you or your wife's choices in treatment. As to the rarity of truly informed consent to ECT, well when you say "some knowledge" that says it all to me.

The side effect of total loss of voice from VNS I learned about on VNS's own website bulletin board before they took it down, it was statements by folks who had the treatment for epilepsy, the original purpose for which it was developed. It was also on the manufacturer's website that I discovered that they never proved effectiveness for depression in clinical trials, you see at one time I was considering the procedure myself.

Now that the FDA has approved VNS without effectiveness, I can no longer find the original bulletin board.

What are MindFreedom's vision, mission and goals?

Vision: A nonviolent revolution in mental health care.

Mission: In a spirit of mutual cooperation, MindFreedom leads a nonviolent revolution of freedom, equality, truth and human rights that unites people affected by the mental health system with movements for justice everywhere.

Goals: Win human rights campaigns in mental health, such as opposing coerced, forced and fraudulent mental health procedures. Challenge abuse by the psychiatric drug industry. Support the self-determination of psychiatric survivors and mental health consumers.Promote safe, humane and effective options in mental health.

Hi Alison,

While I can respect and read your opinions it appears to me to be based upon little or no documentation or facts and more upon your feelings.

It appears to me from the quotation and the link I cited previously that you either didn’t read the article and/or check out the link. I’ll cite the link for you once again:

http://www.mindfreedom.org/kb/act/2003/mf-hunger-strike/hunger-strike-media/LA%20Times/

As I read the article from which I previously quoted and which appears on the MindFreedom website it appears the article was written by David Oaks for the Los Angeles Times Magazine.

“Oaks considers ECT "barbaric"

“they condemn the continued use of electro-convulsive therapy -- or ECT, also known as electroshock”

So whatever personal feelings you may have I’ve confirmed Oaks’ and MindFreedom’s position and my opposition to him and others of like mind as it relates to the banning of ECT.

“As to the rarity of truly informed consent to ECT, well when you say "some knowledge" that says it all to me.” --- Alison Hymes

Just what does it say to you?

You refer to the original Cyberonics bulletin board which I shall presume you mean their former message board and in which case you are either contradicting yourself or confused. You stated:

“I learned about on VNS's own website bulletin board before they took it down”

You then later state:

“I can no longer find the original bulletin board.”

You cannot find the original message forum as you first stated, “they took it down” and prior to its removal I had actively participated on that message forum for about 5 years and while there were discussions of vocal chord side-effects to the best of my recollection no one having a total “loss of the ability to speak”

“It was also on the manufacturer's website that I discovered that they never proved effectiveness for depression in clinical trials, you see at one time I was considering the procedure myself.” --- Alison Hymes

The sponsor’s website has been in continuous operation for at least the past 9 years. Would you please be so kind as to cite for me where you obtained information on the site to validate the above statement?

“Now that the FDA has approved VNS without effectiveness” --- Alison Hymes

Once again, please cite for me documentation to validate your statement?

If you need assistance you might consider utilizing my website as I’ve tried to obtain all articles and documents of information relating to the therapy both pro and con.

I shall happily leave you to your activities and concerns with MindFreedom other than to know I continue to stand opposed to David Oaks, his organization and any individual or group calling for the banning of ECT or any FDA approved treatment and therapies for purposes of MDD.

Warmly,
Herb
VNSdepression.com

.

It seems barbaric to me to force ECT on anyone, but I still don't oppose people who really want it having access to it. But that's me - I know I can't speak for Oaks or the rest of MindFreedom or anyone else. In any case, the ECT business is not likely to go out of business anytime in the next few years, or next few decades for that matter. It'll probably always be available somewhere, and sadly, it'll probably continue to be forced on some people for quite some time to come.

So matter what people's opinions are, I don't think they have the power to ban it completely. I think some people are upset that ECT is or might be banned in some state institutions. They say some who want it might not be able to pay for it any other way. But noone who is confined in an institution can be said to ever freely consent to something like ECT, because there are so many ways that incarcarated people can be coerced into things like that. So people who are opposed to banning that procedure people confined should ask themselves if they want some people to be forced or coerced into having ECT just so that themselves can get it free or at an affordable cost.

Some words seem to have been left out of my last sentence. (I guess it might have been me who left them out.) What I had meant to say there was something like: "So people who are opposed to banning that procedure even for people who are confined should ask themselves if they want some people to be forced or coerced into having ECT just so that they themselves can get it for free or at an affordable cost."

Sorry for having been so unintelligible. I think the problem may have been because I was using a pay-per-use computer whose time was about to run out.