A Rebuttal Article by Julie Genser, founder of Planet Thrive

The Conjurer, by Hieronymus Bosch

MCS America’s article “Preying on the Desperate: Miracle Cures Hold False Promise” by Lourdes Salvador and Linda Sepp, which defines amygdala retraining programs for multiple chemical sensitivity (MCS), chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), fibromyalgia (FMS), and related illnesses as medical scams, was surely written with good intention but is full of disinformation. Their list of ten ways to identify a medical scam appears to be helpful at first glance but the example they use — of brain retraining programs — states false information as fact and reflects a true lack of understanding of the scientific concepts at the core of the treatments they attempt to discredit. While their checklist has some good points, others just confuse readers and seem to herd them back to medical mainstream, the very system that has failed those with environmental illness.  I wanted to clear up some of the un-truths and faulty thinking found in the article since some of their writing about brain retraining programs appears to be based on articles published on my website PlanetThrive.com in the last few months.
Although everyone is free, of course, to make their own decisions about what constitutes a medical scam, I feel it is important to base those decisions on accurate information. Neither Salvador nor Sepp appears to have personally tried the brain retraining programs themselves. It would certainly be easier to respect their opinions if they had both personally completed the programs they are maligning and then resolved that they received no benefit. Instead, with their article the authors have taken some truths and half-truths and caricatured them, further polarizing the chemically sensitive community on a relatively new treatment approach that needn’t cause such divisiveness and rancor, especially at this early stage. In this rebuttal article, I hope to clarify some of the issues discussed and bring the conversation back down to one of honest and fair exchange.
Their article conveniently avoids naming specific programs, but for the sake of this article, I will stick to talking about Ashok Gupta’s Amygdala Retraining™ Programme* and Annie Hopper’s Dynamic Neural Retraining System™**, the two programs which have been featured in articles on my website of late and have been hot topics in discussion groups such as The Canary Report forum, Planet Thrive’s forum, and Green Canary, MCS-Canadian and other MCS-related yahoogroups. Their article may be referring to other programs as well, but I am not familiar with them and will refrain from commenting on them here.

I’d like to note that Annie Hopper’s program is not an amygdala retraining program but a limbic system retraining, which includes the amygdala, hypothalamus, hippocampus and anterior cingulate gyrus. Grouping several programs into one general category is unfair in this context, as each is unique even if they do have some overlapping techniques.

The main issue the writers seem to have with brain retraining programs is the use of the word “cure” in marketing materials and websites. It’s important to first define the term “cure.” Ashok Gupta defined 100% recovery in my interview with him as regaining “85 to 100% of pre-illness levels”1 of health. In his program’s promotional materials, he has always been very clear to state that some people will be completely healed, some will see significant improvement, and some — 10-15% — will see no improvement at all. That does not sound like a scammer to me.

In my interview with her, Annie Hopper said “I would say that by ‘cured’ I mean that you can resume a normal lifestyle and be over 85% recovered from symptoms.”2 While Hopper has definitely used the term “cure” in her promotional materials, through repeated discussions with her over the past few months about this issue, she has recently agreed to recant that term and has removed it from her website — again, not the actions of a scammer. Here is her statement: “In my enthusiasm from recovering from chemical sensitivities, and witnessing others who have recovered as well, I went overboard and used the term “cure” prematurely and perhaps even incorrectly.  I have changed my vocabulary around this and all references of “cure” have been omitted from the website.  My intent in no way was to mislead anyone.  My intention is to give people the hope and tools that they need to recover.  I know what it is like to have this illness and to lose hope.  If I had to start all over again, I would not use the word cure.  I had no idea that it would create such a stir.  Using the word recovery is truly a much better description of the work that I help to facilitate.  The new website address is retrainingthebrain.com.

The authors state in their opening, about medical scams: “The danger is not merely the wasting of time and precious money to purchase these cures. In addition, these miracle cures often delay appropriate medical care. Some may even be harmful or interact with prescription medications in a negative way.”

This statement seems to be based on the idea that these programs will be the first form of treatment sought by sufferers when the reality is that most people will seek help from their doctor before pursuing alternative treatments. It’s only after Western medicine has not helped them do most turn to less conventional approaches that have less of a proven track record. In any case, Ashok Gupta does advise patients in the first lesson on his DVD program to see a medical doctor prior to doing the exercises.

The greater issue here, for some of us at least, is that in the context of environmental illness most medical treatments require wasting precious time, money, hope, and energy and are certainly potentially harmful. It takes months to find out whether mercury chelation will help or hurt you, or hundreds of dollars to see if the Pall NO/ONOO- Protocol will have a beneficial effect. I burnt my lungs very badly trying nebulized glutathione as part of that protocol. It wasn’t cheap either.

The authors caution against pharmaceutical interactions (I’m not even sure how this could possibly occur with a brain retraining program) without even mentioning that for people with severe chemical sensitivities, taking prescription medication can be very dangerous in itself. Most people with environmental illness try to avoid taking pharmaceuticals because their detoxification pathways for xenobiotics are impaired — one of the cornerstone symptoms of the illness.

For many of us, myself included, we lack access to any medical care at all, because doctors’ offices are too toxic to enter without causing ourselves great harm. Even if we can enter our doctors’ offices, most of the helpful medical treatments such as nutritional IVs, heat depuration therapy, and supplements are not tolerated to some degree or can speed up a potentially dangerous detoxification process. Most of them are also completely out-of-pocket expenses — a great difficulty for those who are disabled and have a very limited or no income at all.

To paint brain retraining exercises as a medical scam within this context does people with MCS a real disservice, because whether or not they provide a true “cure,” they certainly can offer a range of potential improvements. I don’t know anyone with MCS who would not want even a small amount of improvement if they could get it.

A treatment that can be done in the safety and comfort of one’s home for under $200 (like Gupta’s Amygdala Retraining™ Programme*) is not an exorbitant expense, especially compared to the cost of some doctors and their treatments today. A 3-day workshop for $995 for an unproven program like Hopper’s DNRS, on the other hand, I agree is inaccessible both physically and financially for the vast majority of MCS sufferers who are unable to travel to distant towns where workshops are being held and don’t have any savings left to gamble with. This, in itself, does not invalidate the treatment by any stretch of logic. It just makes it inaccessible to most, for the moment; we need to keep in mind that Gupta has been working on this for over ten years while Hopper’s is a new program only a year in existence, and she plans to make it available in various more affordable and accessible formats in time. But she is one person, recently recovered from severe MCS/ES herself, and can only do so much, so fast.

At Planet Thrive we believe that the science of brain plasticity is an exciting frontier and we would like to encourage other practitioners to research and develop new programs in this area. The ultimate hope is that it could help improve the lives of so many thousands of people. Calling recovered MCS patients who are trying to share their recovery techniques scammers certainly won’t encourage others to go public with information of this sort in the future.

They write: These scams are often widely touted by the chronically ill because they offer false hope. When one is sick, scared, in pain, and desperate for relief, the promise of being cured is easy to grasp onto. However, the pain of being duped and realizing it was only false hope can be devastating.

I have yet to read about or hear from one person who has completed either program and felt duped and devastated. Nonetheless, this is a very true statement. I have experienced it myself, and it is terrible. But my experiences of feeling “duped” and being filled with hope only to be completely let down all revolved around treatments offered by physicians. In one situation, the emotional pain and sense of hopelessness was so great, my toxicity level so high, and my situation so fragile, I nearly killed myself. This was no snake oil salesman in the conventional sense of the word, but a respected physician with a thriving practice who made false promises and had a terrible bedside manner.

The authors then claim that “More than one health scam purports to cure CFS and MCS by retraining the amygdala to eliminate fear.”

This is a misstatement. The two brain retraining programs I am aware of (Gupta and Hopper) do not purport to retrain the brain to “eliminate fear.” What they claim to do is help to regulate the unconscious “fight or flight” response to perceived threats, which due to toxic injury from chemicals, mold, and other environmental toxins, has become hypersensitized. The goal is a healthy unconscious alert system; not the absence of one.

They go on to say that “therapies aimed at reducing the sensory action of the amygdala so that it does not alert one to get away before the harmful effect of a chemical exposure cause physiological damage only serves to increase the danger from the harmful effects of these substances. Fear and toxicity are independent of one another.”

Let me emphasize again here that the treatments Gupta and Hopper offer are not meant to leave the patient with a reduced sensory action of their fight or flight center; rather, they are meant to normalize a hypersensitized function. This is a complicated area and I have not studied neurobiology in-depth and do not profess to have all the answers. But my understanding of the process referred to by Gupta and Hopper is that the chemically reactive brain is responding to small amounts of toxic and non-toxic substances in an inappropriate way due to an initial toxic brain injury and ensuing maladapted brain wiring that resulted in limbic system kindling. So we are left with a hypervigilant aversion response to stimuli that might otherwise be inert to others, and our debilitating symptoms are a result of our reactions to the chemicals; not to the chemicals themselves. This is not to say that we are not also having a toxicological reaction to chemicals that damages organs, causes cancer, etc., and this does not deny that we have received toxic injury from chemicals.

In other words, it is our reactions to the chemicals that is the problem in chemical sensitivity, and what keeps us from being able to function in society. If our reactions are normalized, that does nothing to affect the toxicity of the substance involved. Formaldehyde is toxic and will always be toxic whether or not we have severe reactions to it. Wool is non-toxic and will always be non-toxic whether or not we go into cardiac arrest around it. It is our body’s unique reaction to it that is the issue with chemical sensitivity. This is an issue separate from toxicity.

So it follows that whether or not one “cures” one’s chemical sensitivity, it should have no bearing on any activism or lifestyle changes one makes regarding the use of toxic chemicals; the fact remains that toxic chemicals are bad for the planet and for its people. That is a no-brainer. The victims of the Union Carbide Bhopal incident in India surely were poisoned and damaged by toxic chemicals. Carcinogens surely cause cancer. Acid can burn a hole in flesh. But none of these things automatically cause someone to become chemically sensitive; the phenomenon of the brain becoming damaged in a very specific way that activates the hypothalamus pituitary adrenal (HPA) axis and causes the brain to become stuck in a trauma response loop. The focus of these brain retrainings is to stop this looping trauma response and reset limbic system function. This is my understanding of the basic premise upon which the Gupta and Hopper theories rest.

Sepp and Salvador then state that “To date, we are not aware of anyone who has recovered any semblance of a normal life without first making major changes to facilitate healing.”

The authors seem to be implying that programs like Gupta’s and Hopper’s completely ignore lifestyle issues and this simply is not true. Most recoveries I have heard about regarding MCS definitely do involve extensive lifestyle improvements like the ones the authors mention. Annie Hopper herself lives in a special non-toxic home. Gupta clearly writes in his program about the need to address nutritional issues prior to beginning the brain retraining, offers dietary guidelines and lifestyle suggestions in his DVD program, and in my interview with him he states that one needs to follow a healthy diet for years after the brain retraining. Lifestyle changes are not a focus of the brain retraining exercises themselves, but both Gupta and Hopper address them to some degree in their writings and talks. Ultimately, lifestyle changes are the choice of the patient; brain retraining programs and healthy lifestyle changes are not mutually exclusive, as the authors seem to imply.

Regrettably, they go on to say “After these changes, it is quite possible that emotional therapies and amygdala retraining can help the few people who have failed to adapt and cope well with these changes.”

It is really unfortunate that the authors feel the need to blame the victims here and attack the emotional/psychological status of those who are helped by the program. By lumping “emotional therapies” together with brain retraining in the same sentence, they imply that brain retraining is a psychological approach, which it is not. Why not just admit that amygdala retraining might just work for some people — why the need to put down and discredit the psychology of those that claim they have been helped by these therapies; why adapt the strategies of Quackwatch and other mainstream medicine sites that love to label MCS as a psychogenic illness? It is very sad to see those with MCS take the tactics that have historically been used against us by chemical companies and the media and turn them against ourselves.

Another misguided statement: “But emotional therapies and amygdala retraining won’t remove poisons or cure CFS, MCS, or FM.”

This second not-so-subtle word association attempt at implying brain retraining programs are emotional therapies reflects a poor understanding of physiology. Certainly removing emotional trauma can reduce one’s total toxic burden and increase the body’s ability to detoxify toxins. And rewiring neuronal circuits to normalize certain brain functions can certainly do the same. When the sympathetic nervous system is in a hypervigilant state, other body systems — like the immune system, detoxification system, digestion, etc. — are downregulated in order to deal with the perceived emergency. High and continuous levels of stress will also inhibit the immune system (decreasing the body’s ability to fend off opportunistic pathogens like candida and keep viruses like EBV in a dormant state), produce inflammatory responses, and dramatically increase the ability of chemicals to pass through the blood-brain barrier.3, 4, 5, 6 Removing the chronic stress and normalizing brain function can result in better functioning organ systems, a much lower toxic load, and increased health.

Below I address each of their 10 points on how to identify a medical scam:

1. The Promise of a Quick and Easy Cure

Neither Gupta nor Hopper promise a quick and easy cure. They both state the exercises should be focused on in-depth for at least an hour per day for 6 months, no matter how soon or how much one experiences improvement on the program. Outside of this hour each day, the principles should be applied as necessary 24 hours a day, 7 days a week. The brain retraining exercises are uncomplicated but difficult to stay committed to and many people have trouble completing the exercises as advised. Some people may find great improvement in a few days or a week, for others improvements might come in months or not at all. You can compare the brain retraining process to that of learning a new language or a new musical instrument, neither is a quick and easy path, but with dedication and practice it will become easier over time as you strengthen new neuronal connections.

2. Presents Unproven Patient Testimonials & Emotional Appeals Instead of Science

Gupta’s website and DVD programs do indeed present scientific research to support his theory.7 From what I am told, because I have not attended one myself, Hopper’s workshops contain a good deal of science to explain the process. I actually find value in patient testimonials (and so does any sensible medical practitioner) — no matter how emotional — but review them with a healthy skepticism. If anything, I feel that the video testimonies on both Gupta and Hopper’s sites are not emotional enough — I’d love to see people screaming from their rooftops about how their lives have been changed, if it is indeed true. In fact, based on the lack of such “emotional” testimonies, I can only surmise that people are not being cured; merely helped. But that is good enough for me right now to remain open and interested in future developments.

3. Claims to Cure Many Ailments Which Have No Cure in Medical Science

I was left confused by this statement. If I understand it correctly, the authors are saying that every cure ever known to man for all diseases, when first introduced, was a scam. Because before there was a cure, there was no cure. Likewise, if there were medically accepted cures for these illnesses already, there would be no need for new treatment explorations, obviously.

4. It’s Not Sold in Stores

Usually, products are sold in stores; not services. Gupta is not selling a book; he’s selling a therapy. Annie is selling a workshop. We would not expect either to be sold in a store. Does Dr. William J. Rea sell his treatments in a store? No, his store sells products only.

5. “It Has Undisclosed Ingredients or Content”

I definitely agree that ingredients should be disclosed for all products, especially those that are being marketed to ingest or put on the body. However, is it fair to expect to read the contents of someone’s book, therapy, or instruction before paying for it in a capitalist society? In essence, Gupta and Hopper are teachers, providing instruction to those that purchase their seminar. Even Amazon.com only provides limited page excerpts to potential customers; physicians will not tell you the specifics of their treatment for you until you agree to pay them for their services; teachers don’t spell out lesson contents before you pay for their course. To expect otherwise in this world is extremely naive.

6. “You Have to Keep at it to Get Results”

That’s right, like any other physical therapy, you have to work at these brain retraining programs to see improvement. Stroke victims have to work hard to regain use of paralyzed limbs, concert pianists have to practice over and over again to perfect their skill. All three are successful due to the creation of new neuronal pathways and the revised “brain mapping” that occurs with repetition. I don’t think there will ever be a quick and easy pill to take to cure chemical sensitivity. Rewiring neuronal pathways requires sustained effort, focus and concentration.

7. “It Doesn’t Work Because You Did It Wrong”

Gupta absolutely does not say this. He clearly states in his writings and in my interview with him that 10-15% of those that try his program will see no improvement at all, and he does not know why. We can theorize that this might be because there are underlying conditions that continue to traumatize the amygdala, nutritional states that do not allow for neuron repair, irreparable damage to the parts of the brain responsible for new neuron growth, or any number of other reasons beyond our knowledge. But on a common sense level, certainly if one does not follow instructions or leaves out exercises and then does not see results, it is reasonable to tell them they did not follow the protocol as outlined. Both Gupta and Hopper offer 100% money back guarantees but they should not be liable if people are not doing the hard work required to do the program.

8. “Science Hasn’t Even Bothered to Discredit It (no threat)”

Annie Hopper has only been leading workshops for a year, and has not published any medical papers on her theory yet so it is far too early to even make a statement like this about her. Ashok Gupta’s articles were recently published on ProHealth.com, one of the most popular CFS/ME sites online today. Cort Johnson, a well respected CFS/ME/MCS patient-activist is currently doing the Gupta program himself. These are websites and people I respect and trust and I do not need profit-mongering pharmaceutical companies to take notice in order to validate the programs since I have already read through the articles and papers, spoken to Annie directly, and am doing the Gupta program myself. I prefer to rely on direct experience, interpretation and testimony when judging a protocol or treatment; certainly not Big Pharma’s take on it.

9. “The seller lacks a medical degree or similar qualification.”

The underlying principles that the Gupta and Hopper programs are developed with all originated from neuroscientists specializing in neuronal plasticity and related areas of medicine. Gupta credits Joseph LeDoux’s The Emotional Brain and Hopper credits Norman Doidge’s book The Brain that Changes Itself as being the source of inspiration for their respective programs. They did not invent these protocols from scratch and neither claims to.

Furthermore, what makes someone “qualified” to develop a theory to help others heal are qualities you cannot derive from any training or degree. An innate intelligence and passion for problem solving do not come with the diploma when you graduate from medical school. In fact, the one thing most environmental illness patients could probably agree on is that most people with medical degrees that they have gone to for help with their illness have either 1) not understood the illness; 2) not believed in the illness; 3) ridiculed the patient; 4) refused to offer appropriate treatment. Finding doctors who accept your illness is no guarantee that they will actually help you. Even going to some of the top environmental medicine physicians who have experienced chemical sensitivity themselves does not guarantee appropriate treatment. Some people will be helped immensely, others not at all, and others will actually be harmed.

And there will always be those outside Western medicine who become motivated by their own experience with illness to help others once they’ve recovered. Stephen Harrod Buhner, a master herbalist, developed a comprehensive herbal program for Hepatitis C after treating himself. His book on the subject is excellent, and would be a huge loss to anyone who would avoid it because he does not have an “MD” after his name. The movie “Lorenzo’s Oil” was based on parents who researched and developed a theory and treatment protocol for their son when doctors could not help him. Norman Cousins cured his ankylosing spondylitis, as detailed in the book “Anatomy of an Illness as Perceived by the Patient.” There are many such stories.

10. “It’s Too Good to Be True”

It certainly sounds that way. I’m sure all the people in Norman Doidge, MD’s book The Brain that Changes Itself might have thought that too before their conditions were healed. It’s a fascinating new frontier of brain science that needs a lot more study and research.

While this is a good concept to have on a medical scam checklist, it is important to remember that there are many people who feel they have been touched by a miracle after their life circumstance was changed overnight by a relatively simple procedure, usually after years of suffering. As depicted in the movie Awakenings, neurologist Oliver Sacks used the drug L-Dopa to bring patients in encephalitis lethargica-induced catatonic states for many, many years back to life, overnight. Just recently a new theory8 made headlines claiming that multiple sclerosis is not an auto-immune disease, but is a vascular disease that could be treated with simple surgery. The president of the MS Society of Canada, Yves Savoie, said in an interview “This merits serious and robust studies so we’re going to issue a request for proposals.” He also said his group “will spend whatever is required to test the new theory thoroughly” — to either prove or disprove it. I am left wondering why the folks at MCS America don’t give this potentially paradigm-shifting approach the same respect. I understand that the group cannot fund such studies itself, but why publicly discredit the therapy and potentially damage its chances for receiving funding from other sources before it’s totally explored?

Further down in their article they state “At its best, such a ‘retraining’ might be useful for the few people who are genuinely fearful or suffer exaggerated amounts of anxiety over their illness.”

I find this to be an incredibly condescending and offensive statement against all those who are currently doing the Gupta and Hopper programs and having success. I do not understand how the authors could possibly make a statement like this, especially without having firsthand experience with the programs they are referring to, or having conducted an in-depth study with workshop/DVD participants. To this end, it is very irresponsible journalism.

They then say that “claiming that amygdala retraining can prevent poisoning by a toxic agent and somehow cure toxicological damage is nothing more than a complete and total scam”

It certainly might be, however, nowhere in any of Gupta or Hopper’s websites or texts do either claim to prevent poisoning by a toxic agent. In fact, Annie clearly states in our interview with her that “the Dynamic Neural Retraining System repairs limbic system function, it doesn’t prevent illness. In order to protect our health, the planet and prevent MCS and related conditions from occurring, we need to mandate our governments to make changes in the way we live and treat the planet.”

Lastly, they end their article with a tagline: “No Toxic Chemicals = No Chemical Injuries = No Illness”

This is simply not true, as heavy metal poisoning and neurotoxins from black mold, Borrelia burgdorferi, and other organisms can all contribute to someone becoming chemically sensitive. Removing synthetic chemicals from the planet might not remove MCS from the planet. We just don’t know, quite honestly. To pretend to know otherwise is foolish. Of course I agree that chemical use should be highly regulated and eliminated wherever possible, but to say that without chemicals there would be no illness is completely unfounded.

While we at Planet Thrive support the authors’ desire to protect chemical sensitivity sufferers from scammers and quacks, we do not agree with their assessment of these programs, nor with their top 10 list which not only serves to exclude any new therapies, but also relies heavily on Western medicine as an authority for medical truth. When most physicians not only don’t believe in the illness or know how to treat it, and some even ridicule patients who bring these symptoms to their attention, why would we hold them as a model of care? Why is patient testimony and anecdotal evidence without value here, when most of the time its the only thing we have to prove our illness to others? Why is it suddenly okay to label certain sufferers of MCS as having a psychogenic illness?

These are the problems I have with this article and hope to have addressed. Of course, I do not wish anyone to be the victim of a scammer and caution all to use a healthy skepticism when analyzing any new treatment as a possibility. By writing this rebuttal article I do not mean to imply that either program discussed is a cure for the illnesses mentioned. The authors have painted a very black and white picture here, and I just wanted to caution others not to “throw the baby out with the bathwater,” as there are many things we as humans do not know or understand yet in this world. My hope is that those in our community will support these two brain retraining practitioners in the ways that we are able — such as writing to brain plasticity researchers to bring our cause to their attention, asking organizations to appropriate funding to studies, etc. — so that the treatments can be either proved or disproved in our lifetime. I encourage you to keep an open mind and never give up hope of improvement.

*As of January 25, 2010, Planet Thrive is participating in an affiliate program for the Gupta Amygdala Retraining™ Programme after observing over 30 members of the Planet Thrive Gupta Support Group, who reported many benefits over several months time.

**As of April 11, 2012, Planet Thrive is participating in an affiliate program for the Dynamic Neural Retraining System™

1 Ashok Gupta Interview, PlanetThrive.com
2 Rewiring the Chemically Sensitive Brain, PlanetThrive.com
3 How Does Stress Affect the Immune System?, stressaffect.com
4 Stress on the Brain, The Franklin Institute
5 The Effects of Stress on the Immune System, healthtree.com
6 Understanding Stress, helpguide.org
7 Unconscious Amygdalar Fear Conditioning in a Subset of Chronic Fatigue Syndrome Patients, Medical Hypotheses Volume 59, Issue 6, 12 November 2002, Pages 727-735
8 Researcher’s labour of love leads to MS breakthrough, The Globe and Mail

Related Posts Plugin for WordPress, Blogger...