A Rebuttal Article by Julie Genser, founder of Planet Thrive
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 dnrsystem.com in reference to The Dynamic Neural Retraining System.”
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 and The Canary Report don’t give this potentially paradigm-shifting approach the same respect. I understand that neither group has monies for such studies themselves, 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.
Notes
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
posted by earthwalker on December 7, 2009 | 2,596 views | tags: acquired toxic brain injury, amygdala, Amygdala Retraining™ Program, Annie Hopper, Ashok Gupta, brain plasticity, brain retraining, chemical sensitivity, Dynamic Neural Retraining System™, EI, environmental illness, MCS
jmecrow
December 7, 2009 at 1:17 pm
great article julie…thank you!
judson
December 7, 2009 at 4:34 pm
Its still a scam. Wake up and smell the coolaid.
Susie Collins
December 7, 2009 at 6:34 pm
I’d just like to clarify that the opinion piece by Linda Sepp and Lourdes Salvadore was originally published at MCS America under the title of “Preying on the Desperate: Miracle Cures Hold False Promise.” The link to the original article in MCS America’s December 2009 newsletter is http://mcs-america.org/december2009.pdf
It was republished by permission of the authors as an op-ed at The Canary Report under the title “The False Promise of Miracle Cures for MCS.”
Susie Collins
Editor
The Canary Report
Jeny
December 7, 2009 at 6:38 pm
Thank you for writing this! Nothing like counteracting unfounded, closed-minded, emotional attacks and falsehoods with open-mindedness, insight, logic, and facts.
Steve
December 7, 2009 at 10:22 pm
Julie,
very very impressed with your arguments here.
Steve
December 7, 2009 at 10:28 pm
the canary report argument doesn’t hold up. Let’s say, for example you had PTSD from emotional trauma instead of MCS from chemical injury – and for the rest of your life over-reacted to emotional stimuli and were miserable, wouldn’t you want a treatment method for modulating this unnecessary and harmful response? Furthermore, by being “cured”, you wouldn’t go out and subject yourself to more trauma.
Julie Laffin
December 8, 2009 at 8:31 am
i agree, earthwalker, and share your point of view regarding brain rewiring and programs that address it. some of the examples in norman doidge’s seminal book, “the brain that changes itself” seemed science defying when i first read them. time and time again, precisely because the scientists did not accept orthodox medical doctrine they were able to cure complex brain maladies once shrouded in complete mystery.
i believe many of us are still suffering because of a lack of research on invisible illnesses. there has not been the widespread political will to address them and certainly there has been industry pressure NOt to. how often do we hear about parents taking things into their own hands to help a child with autism or brain injury? does it matter what ignites much needed research? should we discredit any information of value that shows promise or direction? based on my own trials and failure to heal, i understand why salvador and sepp are skeptical. but i wish they would have approached this subject in a more even-handed and informed way. thank you, julie, for providing this in-depth analysis of the issues.
Ruth
December 8, 2009 at 10:39 am
Thanks Julie G., a very articulate and informed message for all of us with MCS.
Kerry
December 8, 2009 at 2:09 pm
I took Annie’s program. I know that article was referring to her program and website.
I just need to state first I did not read all of Julie’s rebuttal response of the Canary report article cautioning about amydgala retraining programs. But read most of it and agree with what I did read. You also referenced yourself at the end. Yeh!! Very well written Julie, and I don’t say that with bias. I can see you were careful in your rebuttal. Look, I think in the mcs community we have to be very careful. When writing any article that the masses could read whether its Lourdes or Julie G whoever.. we need to do our research and as far as I am concerned reference how we came about our opinions or so called facts? Unless I am missing something… cause I don’t of course own a website. But when I was writing papers at university you had to do this. For example… read up on neuroplasticity first. Or qualify yourself very carefully and state this is opinion only. Don’t state these are facts. Annie’s program is not just on the amydgala as Julie stated. Its related to the whole limbic system. ( it also can help the whole brain) it deals with helping the brain develop new neuronal pathways.
I did Annie Hopper’s DNR program here in Victoria, B.C. I also did it with about 7 I think folks with mcs as well. There were maybe 2-3 that were there for other health issues. This is my opinion and only mine. I do not at this time see it as a cure but I do see it as very valuable – and a usual tool in helping cope with mcs or improve symptoms. Everyone is an individual and may have co- occuring conditions and different health constitutions. No one can lump all mcs’ers into one pot and say, well this brain retraining program should work for you or will cure you. And if it does not, you did it wrong. That said, I will tell you – that it quite possibly could help many with mcs. And why not try it , see for yourself, make your own judgement about it before dismissing it. There is a lot of books on neuroplasticity. Thats where one should start in their research. Lourdes and Linda. ( sorry to u both) if u read this… its nothing personal… but you are not experts on neuroplasticity or it did not seem like the research was done quite right before writing that article that got posted on canary site.
Annie too, is not an expert but she does have a lot more knowledge and training on it than many of us. Cause its what she does for a living in the last year or so within the context of her developed dnr system. I met Annie prior to her even starting this workshop so I can tell you , she does have some credibility in her background. I do differ with Annie on viewing it as a cure for mcs. I have had mcs and cfs for 14 years. I feel I even had a mild case of it as a child. Toxic injury is that. If this ( dnr) can help reset part of our brain, to not overreact or warn us like the world is going to end… why not. ( its not about reducing sensory) ability. More about normalizing it like Julie said. Yes, I think you can be skeptical in reading sites with flashy images. Any website. Don’t ever lose your ability to critically think for yourself.
I do not like some of the tone of that canary article and said so to some extent to one of the authors. But I also agree with some of it as well. We can be victims easily of so called cures or scammers. And we should not be blamed if something did not work. But in that same type of sentence – the authors to me implied that if we succeed at these Amydgala retraining programs that its cause we have emotional issues and we did not adapt well to the illness prior.
Hogwash!! Some of the mcs community has got to stop criticizing someone else’s illness and telling them they are doing something wrong then if they either improve or don’t improve. Focusing on psychological issues. I agree with Julie, there has been more damage done by mainstream medicine and physicians with us with Environmental illness.
If there is one thing I have been alarmed at over and above – many physicians throwing us under the bus and further making us sick or not believing us and family and friends- perhaps not treating us right… the very people we need support from – the fellow sufferers – mcs and
cfs’rs..can do the same to us. I am a trained social worker before I got this illness so be careful – to debate something here with me. I used to work in mental health, Child protection, Family services and did Adoptions. I have studied much about human behavior and psychology. I am also a Christian and believe – as much as possible. ( sure we are not perfect) by no means.. to try to be unconditional in accepting or loving in your dealings with others and in this case a fellow sufferer. If they say they feel better or have for quite some time, believe them. If they say they don’t feel better. Believe them. Acknowledge others have a role on this earth and maybe their purpose is to educate about new theories in dealing with illness or about how to help retrain our brains and bodies. And maybe others purpose is to help us find support online and show us pertinent articles on the illness. Thank- you to Lourdes, Linda, Susie Collins , Annie Hopper, Astok Gupta and Julie Genser -you all are helping in different ways the cause or case of mcs and cfs. The Reader and consumer should always take responsibility in reading something and qualifying it for themselves..Lets try to be more of a team in helping each other. We may disagree and need to challenge the other at times but I think its ok to have critical debate. Just no telling the other- you did not get better cause you did not do it right or you did get better cause – you have emotional issues and failed to adapt to this illness. ( sorry if this comment is not completely well written) but yes I do still have cfs/mcs. But also yes, Annie’s program has helped me and given me improvements !! I might be trying gupta’s program as well. I also find constitutional homeopathic remedies are amazing in dealing with mcs and cfs too.
Susie Collins
December 8, 2009 at 2:21 pm
Aloha Steve,
I would again like to clarify that the opinion piece in question is not a “Canary Report argument.” As I pointed out in my comment above, the opinion was originally published at MCS America. It was republished as an op-ed at The Canary Report with permission of the authors. You might like to look up the definition of “opinion” and “op-ed” to fully understand what that means in the publishing world. Lots of conclusions are being reached all over the place about the content, intent, and publication of the opinion piece that neither the authors nor I as editor at The Canary Report ever expressed and/or intended.
Susie Collins
Editor
The Canary Report
Geoff Cole
December 9, 2009 at 4:46 am
I have had amazing results with fibromyalgia with our brain wave optimization technology. Our technology also helps the brain develop new healthier neuro-pathways. Please review our website and contact me with any questions.
Geoff Cole
Brain Training Centers of Florida
Chris A
December 9, 2009 at 4:15 pm
AS a person who suffered chemical injury more than 10 years ago, I had tried a host of “cures”. I detoxed gaul bladder, liver, lymph…detoxed from yeast, heavy metals, etc etc etc.
The only thing that has been of help has been Annie’s DNR system. I saw results in one week. I worked the program diligently and am seeing substantial results. And, it has allowed me to start living again.
earthwalker
December 10, 2009 at 2:40 am
Thanks to everyone for all the comments. I love hearing the testimonies from past Hopper and Gupta workshop participants and I encourage all to share your experience with these programs, whether positive or negative.
earthwalker
December 10, 2009 at 2:51 am
Susie, thanks for clearing that up about the title. I corrected the article.
Suzanne Olson
December 10, 2009 at 10:18 am
Not sure why you would give space to Lourdes’ ridiculous rantings. Thank God there are brave souls like Annie Hopper who are willing to help people with MCS. These are not the easiest people to deal with. I went to the mall yesterday, and bought underwear at Macy’s because of Annie Hopper. I’ll be able to wear the underwear without washing it 5 times first because of Annie Hopper. I did jumping jacks last night because of Annie Hopper. I can wear polyester clothes, and wool now because of Annie Hopper. I can go to restaurants, see people, visit people in their homes, because of Annie Hopper. I no longer use a gas mask because of Annie Hopper. I can read easily now, and remember what I read because of Annie Hopper. I am alert and energetic now because of Annie Hopper. I know that I will have a wonderful life because of Annie Hopper. I recommend Annie’s program to anyone with MCS, Chronic Fatigue Syndrome, OCD, Anxiety Disorders, Electrical Sensitivity, Fibromyalgia and perhaps many other conditions. Annie’s a gift. My only fear is that she’ll give up on the ei community, and use her talents elsewhere.
Veronica
December 10, 2009 at 12:29 pm
I attended Annie Hopper’s retraining program in Sept/09. I told her at the time -It sounds too good to be true. I was extrememly skeptical but decided that I had to try the retraining as I wasn’t receiving any help from my regular Dr. as he doesn’t know how to treat MCS and basically told me I was on my own when it came to finding help. I have been seeing a homeopathic Dr. for two years prior to doing the retraining with Annie. I must say that the homeopathic remedies helped tremendously but its a huge financial strain as I need to travel by ferry to Vancouver as well as pay for the testing and treatment.
On the 2nd day after the retraining program with Annie, I was able to fill my own gas tank (I left that to my husband) without any back lash – no brain fag or nausea.
The day after the training was completed I was able to go into the butcher shop and for the first time, I was able to smell sausages and not the toxic cleaner that I had always smelled. I was able to go into CanadianTire and I smelled plastic but not the toxic plastic that I used to and I had no symptoms from being there. One of the best victories for me has been being able to sit inside on the BC Ferries. I haven’t been able to do that for well over 2 years (I always had to sit outside, regardless of the weather.) Another thing that has happened is I don’t need to see my homeopathic Dr as often and also the amount of remedies that I need have been greatly reduced. At present, I am not completely healed but I am much better since taking the retraining program. I am not completely homebound like I was; I can run my own errands and can accomplish more at home. I am grateful to Annie for her courage to step up and help others by developing the DNR system. I found it worth the time, effort and money.
Ruth
December 10, 2009 at 5:46 pm
So glad to hear of your successes! I would hope that you would also go to Canary Report and say these things…there is a forum underway now…I’ve encouraged those who have done the Annie Hopper program to let all the MCSers know what results you’re having…we all need this encouragement so badly!
Please consider doing it. Thanks.
Steve
December 10, 2009 at 11:02 pm
to Kerry, Veronica and Chris A and Suzanne – since you have all done the Annie workshops, I have a few questions for you. I’m thinking about taking the workshop after the new year. I’m not sure the extent of your illnesses. Personally I have MCS but also other complications such as malabsorption and various pain syndromes (like migraines), late stage Lyme, CFS, auto immune problems, etc – all of which probably set the stage for MCS late in the game. Do you feel that the therapy would address any of these issues or is it strictly about reducing chemical reactions? Also, since I’d be traveling from the states, I may be walking into the workshops sick and underslept merely from travel and lodging. Do you feel this will compromise my learning process? If you’d rather not respond publicly feel free to email me backchannel – just do a P- thrive member search for Steve in NY. Thanks.
earthwalker
December 11, 2009 at 3:31 am
Suzanne and Veronica, congratulations on your successes with Annie’s workshop and thanks so much for sharing some of your experience here with all of us!!
John Sanders
December 13, 2009 at 10:53 am
I had been extremely sensitive to fragrances and other chemicals for about four years.
I would avoid all chemical environments, and when I could not, I would wear a surgical mask.
Since I took Annie’s workshops I have not worn a mask, even though I travel often on public transportation in Vancouver, and between Vancouver and Victoria. To me the fragrances do not seem as strong as before, though I do smell them, and they no longer produce the all-to-familiar reactions I used to have. I still avoid them when I can, and when I cannot, I breathe them.
Ruth
December 13, 2009 at 5:17 pm
John, I would like to know more about how you did this,
after the workshop was over…is it possible to share more? After the recommended 6 month period of practicing the exercises (whatever they are) did you have to continue to do them every day?
It seems like I have been asking the questions, but there isn’t any further follow-up.
Thanks.
Leslie
December 16, 2009 at 1:10 pm
This was a very informative read – both the warning, the improvements, the counter arguments- this whole thread is awesome. I am personally about to start the Gutpa program and am looking forward to learning the techniques involved. Do i care if it’s a scam? Not really! I know that sounds crazy but if most people have even the smallest improvement with this type of brain re-training then it is worth my time and money- every single small thing i do to heal myself will add up and eventually i believe I will be a fully functioning woman again. I feel these methods are not invasive and don’t interfere with any other things our doctors may be doing, so why not try it- thank GAWD it’s not another crazy miracle pill or supplement – cause i can barely digest those anyway. A pack of CD’s where someone gives me hope is something i can digest.
I don’t believe it is false hope either- because i truly think we all can be healed one way or another- and we should not give up even when we are at our sickest.
I am glad Linda and Lourdes wrote this, because the thought and controversy it stirred in so many has made it a full circle of worthwhile discussion.
earthwalker
December 16, 2009 at 2:26 pm
Thanks for your comment Leslie. I agree that it was a positive that Linda and Lourdes wrote their article because they gave voice to ideas many were thinking and allowed others to address some of the misinformation presented in some of their arguments.
I think we are all on the same page as far as not wanting anyone to be taken advantage of or preyed on. But we just have to be careful who we identify as the enemy, and recognize that this is not a black and white issue on either side of the issue, but a complex spectrum of grays.
Ruth
December 18, 2009 at 4:22 pm
Have just ordered the Gupta RT program today…noticed that there is excellent support here on Planet Thrive’s group as well as Gupta’s own support blog. Spent a while reading over the posts today….many, many positive reports, and a few who were discouraged that their results were not as they expected. Anyway, I am excited about starting the New Year doing something positive for myself. Wishing everyone the best!
Suzanne Olson
December 18, 2009 at 7:32 pm
My article on Annie Hopper:
http://bit.ly/AnnieHopper
Betty
December 21, 2009 at 6:17 pm
Julie more than adequately debunks Lourdes Salvador’s and Linda Sepps’ claim that Brain Retraining is a scam. Neither apparently have tried the program, yet they fabricate assertions that it is a scam out of thin air. I’ve been researching Brain plasticity, and I for one can’t wait to try Ashok Gupta’s program. I’ve spent tens of thousands of dollars of programs and treatments that have less of a track record, so $200 is a bargain Thank
you Julie for writing this excellent rebuttal.
earthwalker
December 22, 2009 at 3:15 pm
Thanks for your comment Betty.
Suzanne, thanks for sharing your article on Annie Hopper. I noticed you mention that Annie is meeting with Norman Doidge, MD in January. Annie did share that with me last month but I wasn’t sure if it was okay to announce that publicly. This is a big deal, in my humble opinion. This is the physician who surveyed all the top neuroscientists working in brain plasticity for his book The Brain That Changes Itself. If anyone can help connect her with the right people, I think he can. I don’t want to get too excited about it, but hopefully something concrete will come out of that meeting to help validate the program in a tangible way, through funded studies.
Lauren
January 4, 2010 at 8:57 pm
Very good article. I don’t know if this is an appropriate place to say this, but another good training program for CFS/ME is the Therapeutic Training Company in the UK.
Trish
January 15, 2010 at 3:07 pm
Thanks for sharing all this info everybody. I’m hoping to take Annie’s workshop in Mill Valley, CA in early March. I’m not as sick as most of the people who post here, from what I can tell, and if I do get the money together to take the workshop I’ll start posting here about my experiences.
I’m really excited to hear that Annie is meeting with Dr. Doidge. Does anybody know when the meeting is and what is going to be discussed? I hope Dr. Doidge is going to help set up a program where people are brainmapped or have brain images taken before the workshop and then at certain time periods after the workshop to produce scientific evidence of neural rewiring. That would be a tremendous boost to getting neuroplastic therapy out to more people with these conditions.
As far as the cost of the 3 day seminar: In my opinion, $900 is very reasonable considering that it is three days long and each day is 6 hours of training in a very small group. Annie is able to give personal attention to everybody because she limits the group to ten people max. I’ve had doctors who specialize in Fibromyalgia (the condition I’m having the most problems with currently) and they charge $500 and up for the initial patient appointment. That doesn’t even include any testing and the physical therapy they recommend that most people don’t even have very good results from.
Just my 2 cents.
earthwalker
January 15, 2010 at 3:10 pm
Thanks for sharing Trish! I hope you will return here and post about your experience at the workshop afterwards. I don’t have the details of Annie’s meeting with Dr. Doidge, just that it is at the end of January. If I hear anything I will post about it on Planet Thrive. Best, Julie
Trish
January 16, 2010 at 12:01 pm
Julie,
I really don’t know at this point if I’ll be able to take the workshop in March just because of the money situation. I don’t feel that the workshop is overpriced. The bigger problem for me is that the area surrounding the workshop site is a very upper class area and the hotel and motel rates are pretty steep. I think the lowest I found was $135 a night – and that’s for the off season! Add into that the cost of an airline ticket and a rental care and the workshop is the least expensive part of the trip. LOL
But I’m still hoping and praying that the money will come through.
Trish
Ruth
January 18, 2010 at 7:09 am
Just read that Mayo Clinic is doing a study on Amygdala Retraining Programs…results supposed to be in by June this year, I believe. Anyone else know more about that?
This was from a comment posted on Canary Report.
live with mcs
January 18, 2010 at 7:44 pm
I’m not sure what to think of any of this. I have a hard time believeing it’s all mind over matter, I’m not dismissing that it is possible to find relief with this either. I have a friend that has had sucess and I am so happy for them.
I was chemically injured, I go through times of not wanting to wear my mask in stores because I’m tired of living in a bubble or standing out. And at first, I seem to do OK or fine for awhile. Then the toxins build up in my body from being stupid like right now thinking I can handle being around “some” of those chemicals and I end up taking a few steps back with my health.
Has anyone been through this program and exposed themselves to toxins over time and still had no problems. I’m not trying to be narrow minded but have they?
If I’d only known what I know now about toxins and chemicals I would had led a very different life before I became ill. Some of them are still very deadly and to think it’s OK to be around them I have a very hard time with that concept. They aren’t safe for anyone!
I once considered having the inside of my nose burnt so I wouldn’t smell things and or have reactions. Another EI/MCS person said to me that they would “want to know” when they are around something dangerous and to know to get out of there. I guess I’ve grown to think that as well.
I know, I don’t know about this treatment and what all of you are speeking about. So I’m sorry if I sound stupid. It blows my mind how it can all be (((mind over matter))) though! Honestly…How Can That Be? Can anyone help me compriehend that one or enlighten me to understanding it better in easy terms that I might understand? I do want to know, I don’t like being ill either. I want to believe that better days are ahead of me as well, but I just dont get this one! I’m so happy that people are getting better, but how????? It doesnt compute in my brain how it could!
Help me to understand please because this does seem very important.
earthwalker
January 18, 2010 at 7:49 pm
Ruth, please see the article I posted on this today: http://planetthrive.com/2010/01/mayo-clinic-recruiting-cfsfms-patients-for-amygdala-retraining-study/ I have an email in to Ashok Gupta to find out if he is involved in this study or not and I will let everyone know if so. This is very exciting news!
earthwalker
January 18, 2010 at 8:04 pm
Hi Live with MCS,
I understand your confusion and no, you don’t sound stupid for not understanding this. The important point is it is NOT “mind over matter” – NOT AT ALL – and it’s dangerous to think that it is. Do not attempt to expose yourself to something and just think that positive thinking will protect you…IT WON’T! Right now, you and anyone else with MCS are particularly vulnerable to chemicals.
If you want to understand the premise behind this better, you might want to read Norman Doidge’s The Brain that Changes Itself. It is great for opening one’s mind up to the possibilities. Otherwise, it is hard to comprehend how just thinking differently can affect the brain. But we are talking about REWIRING the brain with this program. So the brain functions differently. This is different from saying if you think you won’t react you won’t…this is a concentrated program that takes 6 months of focused work to create new neuronal pathways in the brain. Physical changes; not mind over matter.
My advice to you is to read the Doidge book and keep an eye out on the Internet for the experiences of others with MCS who have done the program. Right now there are about 25 people with MCS doing the Gupta program and discussing it on the support group we have on Planet Thrive. You could also join the group and listen to the discussion. Just start with reading and discussing with others and it will either resonate with you or it will not. There is no pressure on you to do it.
sue v
January 26, 2010 at 6:44 pm
HI,
My son is on nebulized glutathione right now, how did you burn your lungs with it, what should we be looking out for? and did your lungs recover from it, I thought it was supposed to be good for the lungs?? BTW, he is using 10 drops (about .5 ml I think) diluted in 3 ml sterile saline with a drop of hydroxo B-12 added.
thanks, sue
earthwalker
January 27, 2010 at 1:30 am
Hi Sue,
It was years ago so I don’t remember the exact dose, except that it was the starting dose at the time for the Ziem/Pall Neural Sensitization protocol. It burned my lungs immediately – I was coughing and had severe breathing trouble and discomfort for at least 24 hours after that. I had to dilute it down considerably and it took a month to ramp up slowly to the recommended starting dose. I think you would know by now if it was bothering your son’s lungs…I would just pay attention to coughing and trouble breathing. Hope all goes well for him! Julie