The Center for Mental Health Studies contracted Linda Andre, head of Committee for Truth in Psychiatry, the largest group of shock survivors, to write the following for its ECT report.
But CMHS bowed to heavy pressure from NAMI and the NDMDA, who lobbied hard to keep negative information from the report. CMHS, after hiring Ms. Andre, censored her material.
Here at ect.org we bring you the censored material! Exclusive!
What position does your organization hold on the use of ECT?
First, our organization is unique in being the national organization of and for persons who have received ECT. We are the only organization that can claim to represent ECT survivors or recipients (there being no such thing as an ECT consumer). We are not industry-funded or industry-backed, like other organizations wrongly construed by CMHS to be "consumer" organizations (NDMDA, NAMI) and we do not include family members (NAMI). The agendas of those groups are necessarily very different from ours.
Our founding purpose, back in 1984, was to advocate for truthful informed consent to shock. Shock, as a brain-damaging and permanently life-altering procedure, should never be given without fully informed consent, including when the patient is technically or really involuntary and when the patient is alleged or adjudicated incompetent. We and our allies, such as all 50 federal Protection and Advocacy agencies, have struggled toward that goal for 13. years. At this point we realize that while informed consent may, theoretically, be the law of the land, in real life it is politically impossible to achieve---it is opposed, for instance, by the powerful American Psychiatric Association, which misleads patients with the totally fake "statistic" that only "1 in 200" instead of all persons have permanent memory loss. Since patients cannot have the protection of informed consent before shock, nor can they find redress for lack of informed consent after the fact, a majority of our membership now supports a total ban on shock. But we have not yet formally changed our position statement to reflect the political reality of 1997.
What do you think about involuntary administration of ECT?
Forced shock is the most profound violation of the human spirit imaginable. The use of force is a second injury superimposed upon the damage of the actual shock itself.
It is arguable that forced treatment (of any kind, and especially of the most drastic somatic variety) is a violation of the U.S. Constitution---that is, if constitutional rights are thought to be applicable to mere mental patients. We reject CMHS' position that this is a matter for states to decide.
CTIP members have experienced the entire spectrum of involuntary ECT. The spectrum begins with lack of informed consent; in that sense all patients have involuntary ECT. Then there are gradations of coercion including pressure from family members acting under the instructions of doctors, director indirect pressure from insurance companies unaware of the long term costs of shock, outright threats of what the patient most fears if she does not sign for shock (depending on the patient, this could be being committed; being released without other treatment; being rejected by a doctor; losing housing). At the other end of the spectrum is court-ordered involuntary shock.
What's your position on ECT's effectiveness and safety?
Even the industry-generated "literature" is divided on the issue of efficacy. The longest industry researchers have been able to show any benefit from shock is four weeks. There is no longer any disagreement in the industry that shock's benefits are temporary.
Some researchers have concluded that there is no difference in efficacy between shock and sham or placebo shock. For example, Dr. Graham Shepard of England carefully reviewed all the existing sham vs. real studies, concluded that there were errors in the research, and that no evidence exists for the efficacy of shock. No one has refuted his findings. Not surprisingly, his study has not been allowed to be published, since a small group of hard-core shock promoters and publicists act as gatekeepers at all the journals where it could have found an audience.
ECT is always damaging to brain, memory, and cognition, and this in turn is devastating to personal integrity and sense of self. Ironically, it destroys the very foundations of what we call "mental health." The disabling effects, unlike the effects on depression, are permanent.
What do you feel about ECT as a treatment option?
We believe ECT is only brain damage and that objective scientific investigation will prove this. We are in favor of such an investigation, while the shock industry (APA) opposes it. Even before an investigation, these facts speak volumes about the nature of shock.
The question could be revised to read, "What do you feel about brain damage as a treatment option?" There may be those who are in favor of brain damage for mental patients. We are not among them. Brain damage is not a treatment option.
There is no justification for using this procedure on humans unless and until it is proven safe to the brain by researchers outside the shock industry.
As long as shock continues to be used, it must be followed by intensive rehabilitation and retraining. This should include cognitive rehabilitation of the type offered to survivors of other head injuries, support groups of survivors to share self- rehabilitation strategies, and job retraining.
In general terms, how has your organization been involved with ECT since 1985?
We organized the year before, after having come together to speak out as survivors at the FDA, to advocate for truthful informed consent to ECT and for an objective scientific investigation of the effects of shock on the brain.
In 1985, we advocated for survivor involvement in the NIMH Consensus Conference on ECT, which was overwhelmingly biased in favor of the men who make their livings and reputations promoting shock as safe when it is not. Two of our members spoke on a panel and many others attended and spoke from the floor.
Since our groups efforts have largely centered around the Food and Drug Administration, it is necessary to briefly describe events before 1985. In 1982 the American Psychiatric Association, allowing a handful of shock doctors on a "Task Force" to speak for the group as a whole, came out against an investigation of shocks effects on the brain by submitting a petition for reclassification of the shock machine to the FDA. (Shock was, largely due to the efforts of survivors and our allies, classified as a Class III device in 1979; Class III devices must by law be fully investigated for safety. Class II devices need not be investigated, so a reclassification to Class If would circumvent a safety investigation.) Since 1982 and continuing to the present day, we have encouraged survivors (whether members or not) to write to the FDA documenting their experiences, and have been successful in that the FDA Docket 82P-031 6 now contains the largest collection of survivor reports in the world. We also submitted three petitions to the FDA: one for a before-and-after CAT scan study of shocked animals, one asking FDA to mandate an informed consent statement written by survivors and containing truthful information about shock's effects on memory and cognition, and another (actually dozens of individual petitions) volunteering our own brains for a CAT scan study of shock's effects. We are very proud of having prevented the reclassification of the ECT device for the past 1 5 years; as long as the reclassification does not take place, the door is open for a safety investigation to take place one day, an investigation that is nearly sixty years overdue.
In 1990, when the Safe Medical Devices Act was being drafted, we organized to exempt the shock machine from automatic reclassification to Class II without a safety investigation.
From 1985 to the present, members worked at the state level towards changing state consent forms- - -often modeled on the APA's or manufacturers' fraudulent forms- - -to truthful statements. Sometimes we were partially successful (Texas, 1992) and sometimes we were not (New York, 1993). We also helped introduce a bill for reporting shock statistics in Texas (which was successful) and New York (which was not).
Our membership grew thirtyfold from 1985 to the present as people continued to receive what APA fraudulently called "new and improved" ECT without informed consent, and continued to suffer brain damage and memory loss.
Can you tell me some of your members' experiences?
First, it is important to note that none of the other so-called consumer organizations surveyed here by CMHS have any data on how many of their members have had shock, let alone how representative those members are of the majority of persons who receive shock. CTIP, on the other hand, has collected and documented the experiences of thousands of persons.
All of our 500 members have signed a membership form which states: "I have had ECT (shock treatment) and I know or suspect that I was not truthfully informed about its nature or consequences. In the interests of protection of future patients, I endorse the statement of "Patient Information About ECT" that has been proposed to the FDA by the Committee for Truth in Psychiatry, and, in so doing, I become a member of the Committee."
The survivor-written "Patient Information About ECT" which all our members agree is representative of their experiences reads, in relevant part:
ECT has one adverse effect that occurs in all cases. That is memory loss. During a course of treatment a patient experiences a cumulative eradication of memory, which begins with recent events and learning (including worries), and gradually extents to the distant past. Once the course is ended, memory gradually returns in reverse time order until, in about a month, the patient has regained the main outlines of her or his personal memory and also knowledge and skills acquired early in life. After this length of time there is little further automatic return of memory, although a good deal more has become strong enough that it can be later revived by reminders or efforts at relearning.
The extent of the permanent loss varies with number of treatments, age of patient, placement of electrodes, and other factors, but the pattern of the loss is the same for all patients. The loss is total or near total for the period of the ECT course and tapers back over previous years with smoothly diminishing severity and no precise cut-off point. The patient's remaining memory appears "spotty" in that the smooth amnesic blanket has merely dimmed some memories but submerged others, depending upon their original relative clarity.
In addition to this erasure of pre-shock memory, which is certain to occur, there may be a permanent adverse effect upon memory function after the shocking. That is, the patient's memory for new experiences and new learning may fade rapidly.
Some patients do not mind their memory changes and seldom have occasion to notice them. At the opposite extreme are persons whose work or way of life is made impossible by them. In between are persons who gradually adjust to various degrees of handicap.
CTIP has collected information about the nature and extent of the permanent cognitive disability that often results from shock treatment, but which is almost entirely absent from articles allowed to be published in the mainstream "scientific" literature. In this effort, CTIP encourages survivors to have brain imaging and neuropsychological testing for brain damage, and to share the results of these tests with other survivors and professionals. At least a dozen CTIP members have undergone testing. The results not only unequivocally show brain damage in all cases, but are strikingly consistent: that is, shock brain damage shows up in the same manner in all survivors. In some cases survivors have suffered significant losses in IQ scores.
In 1991 CTIP published some of these findings in a paper written for the National Head Injury Foundation, titled "Electroshock as Head Injury." Many of our members have undergone formal cognitive rehabilitation for head injury (brain damage) and report that it has helped them but that professional denial of iatrogenic brain damage made access to rehabilitation services difficult. With professional help hard to find, our members share strategies for self-rehabilitation. CTIP is the only source for such information.
Memory and cognitive losses, though profound in themselves, are frequently only the beginning of a chain of losses which result from them and can be lifelong. Examples typical of our membership are: loss of relationships with others including spouses and children, loss of job and career, loss of socioeconomic status, loss of earning capacity---to sum up in two words frequently used by our members, loss of self.
From the perspective of the consumer, what do you think are the overall benefits and risks of
Because of the fraud and deception involved in the "choice" to get ECT even under the best of circumstances, there are no "consumers" getting shock.
One can't talk of benefits without asking: who benefits? Even the published "literature" which is favorable to ECT to the point of fraud, can claim only one benefit: relief from depression for up to four weeks. That same "literature" as summed up by the Consensus Conference estimated the average memory loss from shock to be eight weeks. The patient typically won't even remember the period during which he or she "benefited." Family members and doctors, then, are the only real beneficiaries.
A "benefit" frequently claimed by shock proponents- - -that shock somehow prevents suicide- - -is a public- relations ploy. There is no evidence for this claim.
Unlike the benefit, risks and costs are permanent and lifelong. Permanent memory loss is a certainty, not a risk; the variable is how much memory will be lost. Even a patient who is fully informed of how severe memory loss can be---as no ECT patient ever is---can only guess as to the ways her life will be affected by the loss. Given the extremely high value we as a society place on memory and mental competence, it is a rare patient who would find that the benefit of shock outweighs its risks...that is, if she were allowed to weigh them freely, with full and truthful information.
Ideally, patients would be informed that cognitive function (i.e. short term memory, attention, concentration, and intellectual abilities, including IQ) frequently does not return to normal after shock and should they decide to risk this, would make preparations---if possible---to survive after shock with less ability to think clearly, plan, remember, and work.
What would you say the key issues for this report are?
The report was called for by psychiatric survivors and shock survivors. It was to have looked into involuntary shock, and specifically the federal governments funding of it. Since, as of 1/17/97, it no longer intends to deal with involuntary shock, there is no reason for it to exist at all. There is no need for yet another selective "literature review" summarizing the viewpoints of those who benefit financially from the use of shock. CMHS has done this before, FDA has done it, anyone with a computer can do it.
The Government should have used this report to answer to its constituents, the survivors, and to give voice to them. The power imbalance between wealthy and powerful doctors and the most stigmatized group in our society---mental patients usually impoverished as a direct result of "treatment"- - - is so great that survivor voices have had no outlet. This does not prove that doctors are somehow right and survivors are wrong, or crazy, or liars. However this is what appears to be the case when only the words of shock doctors are considered.
Specifically what needs to be done in terms of future research?
First and foremost: an objective scientific investigation of the effects of shock on the brain. This should involve modern brain-imaging technology to scan brains before and several months after shock, to compare them. It shouldn't be necessary to add that the patients should be getting shock for the first time and should be free of any complicating neurological problem or disease; however it is necessary to add this since shock doctors, in an attempt to blame anything but shock for abnormal brain scans, have muddied their own "research" in this manner.
The Janis memory studies of the 1950s should be replicated. Testing pre-and post-shock should include memory tests designed by survivors, not shock doctors.
Neuropsychological testing of survivors needs to be done to assess memory and non- memory cognitive function. These tests are designed not to require a "pre" test (they are used to asses brain damage in other types of head trauma which cannot be foreseen).
Research should be done on the social and economic costs of ECT. Researchers need to look at the ways in which a family is affected by one person having shock (continuing the work done by Carol Warren on women who had shock in the 50s and 60s). The costs to society of lost productivity and lifetime Social Security disability payments to persons who worked prior to shock need to be documented and factored into any assessment of shock's cost-effectiveness.
What alternative treatments would you recommend?
We do not recommend any treatments; that is not our purpose.
The alternative to using a procedure which has not been tested for safety, and for which overwhelming evidence of unreasonable risk exists, is not to use the procedure unless and until it is proven to be safe.
What do you see needs to be looked at in terms of education for the healthcare personnel involved with ECT?
Most healthcare personnel get their information from other professionals. Whether or not they themselves make money from shock, they have an investment in believing that mass deception and fraud on the scale practiced in the shock industry does not, could not happen. They need to be educated by survivors, and this needs to happen while they are still in school, before they have too great an investment in "professionalism" and the income that goes with it.
The shock "consumer" does not exist; "consumer" implies choice. Patients need to be able to get information from survivors before having shock, not after when it is too late. Educational materials developed by survivors must be available to patients who are incarcerated as well as outpatients. All currently available "educational" material such as videos was made by shock machine companies and/or doctors who make a living doing shock; such materials should clearly be labeled as shock advertisements and should in no case be used to obtain legal consent.
The family of the patient?
The only answer to that is "that depends". Families can be extremely toxic, extremely supportive, or anything in between. In some cases, such as when the patient objects, families should not be involved at all. In no case should hospital staff employ families to coerce or threaten patients or otherwise fraudulently obtain their signature on the consent form; however, the experience of our members suggests this practice is widespread. When the patient agrees, the family should have access to survivor-written materials or survivor videos. Informed consent for family members should include consideration of the possible ways the entire family may be affected if the patient has shock. Sometimes the patients agenda and the agenda of other family members are irreconcilable.
Which experts do you feel are crucial to a full examination of ECT?
Survivors, and survivor groups which are independent of industry influence and funding, are the experts on shock.
The current situation with respect to shock doctor "experts" is unethical and perhaps illegal. It is impossible to name one of these self-selected "experts"--- Fink, Weiner, Sackeim, Abrams, Kellner, Coffey, Welch, etc.---who does not own a shock machine company, receive "research" money from shock machine companies, make videos for shock machine companies, "consult" or work for these companies, make money defending shock doctors and shock machine companies in court, and/or make money directly from giving shock.
It is crucial that these "experts" not be included in a full examination of ECT.