The false promise of miracle cures for Multiple Chemical Sensitivity

Posted on Nov 30, 2009 by Susie Collins in Blog, Guest Bloggers, Linda Sepp, MCS

All ten warning signs of a medical scam are present when it comes to curing MCS, CFS, and FM with amygdala retraining.

Op-ed by contributor Linda Sepp and guest contributor Lourdes Salvador, MCS America.

This post was originally published at MCS America.

amygdalaThe History of Health Scams

People with incurable illnesses are often the target of miracle cure scams. These promises usually involve the marketing of unproven cures for a fee. Often the cure is easy and painless and the aggressive marketing is loaded with lucrative testimonials and success stories in bold fonts and bright colors with flashing text and lots of exclamation points.

They come in the form of websites, word-of-mouth, multi level marketing, email marketing, printed ads, mail, telemarketing, and the backs of traveling wagons.

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.

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.

Ten Warning Signs of a Scam

1. The Promise Of A Quick And Easy Cure

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

3. Claims To Cure Many Ailments Which Have No Cure In Medical Science

4. It’s Not Sold In Stores

5. It Has Undisclosed Ingredients Or Content

6. You Have To Keep At It To Get Results

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

8. Science Hasn’t Even Bothered To Discredit It (No Threat To Pharmaceutical Sales)

9. The Seller Lacks A Medical Degree Or Similar Qualification

10. It’s Too Good To Be True

Targeted For A Scam

Chronic fatigue syndrome (CFS), fibromyalgia (FM), and multiple chemical sensitivity (MCS) are debilitating illnesses which have no cure and leave sufferers lives in ruins. Even those with the best ability to adapt and cope often suffer from the abuse of other well-meaning people who think the ill somehow brought these illnesses upon themselves or that the illnesses don’t really exist. This can create a situation of desperation in which a patient is willing to try anything to get better.

Another thing that creates desperation is a persons unwillingness or difficulty to accept a change of circumstances, such as what occurs when a person with MCS must avoid contact with everything they once believed was safe. Life as it was known no longer exists. Friends, family, home, and career plans are all drastically affected. If a person has trouble accepting the new reality and isn’t willing or able to create a new life within this new set of circumstances and limitations, desperation can set in.

CFS has had its share of miracle cures. The recent discovery XMRV Retrovirus has led to the potential that this virus is the cause of CFS. Many CFS patients have been delighted with this news because it gives their illness long-awaited legitimacy. Still others are not so happy, believing that the drug companies may be behind this discovery with nothing more than intent to market a profitable new drug. Irregardless, in the face of emerging viral evidence, XMRV is now a newly emerged threat for purported cures.

People with MCS are also coerced into unproven treatments. Often, these treatments consist of over-simplified and unsupported views on a single barely-relevant component of a vastly multi-dimensional illness. These over-simplified treatments give false hope and address something that the person can quickly and easily address, such as the amygdala.

An Example of a Medical Scam

The amygdala is an almond shaped part of the limbic system of the brain [see notation 37 in the photo above]. It is believed to be responsible for regulating emotions and fear responses. It is also called into action to ‘alert’ a person to dangers, such as a toxic chemical exposure. Studies have shown that breathing carbon dioxide can trigger panic attacks because the carbon dioxide toxicity alerts the amygdala, generating a fear response… the body’s way of saying, “Get away; you are being poisoned.”

Because most people are not aware of the many chemicals around them and manychemicals such as carbon dioxide are completely odorless, the connection between the amygdala’s response and the ‘flight or fight’ panic response is not made on an intellectual level. The resulting panic attack appears to be an irrational fear, when in reality the amygdala is a sensor which functions as an alert to various dangers.

In some people, it is possible that fear responses can become exaggerated and turn into a vicious cycle. Since people new to MCS are not informed about all the toxic chemicals in everyday products and materials, they may be given a lot of misinformation about what is really going on. Articles which claim MCS is a disorder about smells instead of a response to toxic chemicals increase ignorance of the truth. This can establish a fear of smells in some people, along with inadequate responses to real toxic threats. Through continued exposure to toxic chemicals that injure brain and body processes, the damage becomes more complex both physically and emotionally because more and more biological systems are involved.

More than one health scam purports to cure CFS and MCS by retraining the amygdala to eliminate fear. Unfortunately, these scams rely on an overly simplistic view of complex multi-system illnesses… a view which ignores vast biological evidence of reduced liver function, cellular inflammation, oxidative stress, endocrine disruption, central nervous system changes, and other symptoms which result from poisoning and are not the result of a simple panic attack. The view is so simplistic that it relies on the mistaken belief that MCS and CFS are just fear and completely ignores the biochemical damage done by toxic chemicals… the very thing the amygdala’s alert function is designed to prevent.

Therefore, 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.

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. Having a safe, nontoxic home where one can avoid exposures is of primary importance. Making adjustments to diet, learning about food sensitivities, eating organic foods, drinking highly filtered water, and using targeted supplements to help repair cellular and other damage is also required. 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. But emotional therapies and amygdala retraining won’t remove poisons or cure CFS, MCS, or FM.

Examining the various amygdala retraining claims, it is easy to see that all ten warning signs of a scam are present.

The Promise of a Quick and Easy Cure

People are told a simple brain exercise they can do at home will cure them.

Presents Unproven Patient Testimonials & Emotional Appeals Instead of Science

The websites and material abundantly claim cures and provide emotional testimonials designed to give false hope. Materials flash, have capital letters, and brightly colored text to get your attention. No scientific evidence or proof of cure can be found.

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

These amygdala retraining programs claim to cure MCS, FM, CFS, depression, anxiety, and a host of other illnesses… none of which can be cured by medical science. MCS, CFS, and FM experiments involving successful amygdala retraining which results in remission cannot be found in the scientific literature.
It’s Not Sold in Stores

It’s not sold in stores and it’s not written about in books. The techniques are kept top secret and are often only taught in expensive workshops for a high fee.
It Has Undisclosed Ingredients or Content

The nature of the exercises and ‘retraining’ is not revealed until a fee is paid. No doctor would offer a surgery without revealing the full nature of the procedure to be performed, nor should a person be expected to pay for any type of treatment or therapy without knowledge of the procedure they are paying for.

You Have to Keep at it to Get Results

The purporters of amygdala retraining say it’s simple and easy and claim they themselves have been cured… instantly or within days. But you will have to keep practicing the technique to get results… often for months they claim.

It Doesn’t Work Because You Did It Wrong

After you’ve shelled out money and taken the workshop and don’t get results, you are simply told, “You’re doing it wrong.” But they often can’t specify anything wrong with your technique, just that you have to practice more or concentrate harder.

Science Hasn’t Even Bothered to Discredit It (no threat)

Usually when a complimentary or alternative treatment works, it is a threat to the drug industry and they actively work to produce studies to discredit it in favor of drug based approaches. MCS, CFS, and FM experiments involving amygdala retraining which results in remission cannot be found in the scientific literature.

The Seller Lacks a Medical Degree or Similar Qualification.

None of the purporters of amygdala retraining cures hold medical credentials.

It’s Too Good to Be True

A simple exercise you do each morning for a short time and you’re cured. You can stop the exercise once the amygdala is retrained. After spending hoards of money on testing, doctors, treatments, medications, and other methods, this seems so easy, it can’t be for real.

All ten warning signs of a medical scam are present when it comes to curing MCS, CFS, and FM with amygdala retraining.

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. It may indeed be a great technique to help address the many emotions living with a challenging chronic illness presents. For this small percentage of the chronically ill and general population, retraining may serve as a good coping technique to deal with the many emotions which arise when illness strikes.

However, 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.

In response to amygdala retraining, a respected colleague said: “All the brain retraining programs are just giant frauds designed to suck money out of the sick and desperate. If you want some real answers to CFS, ask yourself why is it one of the most toxic materials (mercury) in most people’s mouths. Why do we inject it into people with vaccines? I could go on. No one wants to ask the hard questions.”

Some people with CFS, MCS, and FM are tired of all the supplements, avoiding places, having to check everything out in advance, and don’t feel that this is a life worth living long-term.

Rather than wasting time on miracle cures, it is suggested that people who want to see a change in their lives become politically active and join in campaigns to stop toxic chemicals in everyday products.

Instead of spending hundreds of dollars on promoted cures and the 30 minutes or hour a day meditating on brain changes, donate to groups like the Environmental Working Group (EWG) and spend 20 minutes a day calling your elected representatives and the companies making toxic products and get them to stop poisoning the planet and human life. The problem of illnesses like MCS would be solved then!

No Toxic Chemicals = No Chemical Injuries = No Illness

© 2009 MCS America. Reprinted with permission.

Photo credit.

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40 Responses to “The false promise of miracle cures for Multiple Chemical Sensitivity”

  1. jacki

    01. Dec, 2009

    Great article:
    I could not agree more:
    the only cure is avoidance of the chemicals…
    change of lifestyle and put your energy in living as NON toxic as possible..
    and get the “world” to change with you…baby steps are better than no steps at all..
    save your energy for healing, for loving
    save your $$ to buy only organic food, clothing, home goods you are making a change each time you do so…making healthy non toxic choices, make a differnece of supply and demand..
    spread the word, educate, educate, educate.
    walk the walk
    actions always speak louder then words
    LIVE THE NON TOXIC lifestyle and others will follow..
    keep the faith and love inside no matter what craziness is going on with the outside..

    GOD BLESS
    light & love
    jacki :)

    Reply to this comment

  2. CatherineWO

    01. Dec, 2009

    Thank you for this intelligent and timely article. I am about to mail out my annual Christmas letter, in which I mention MCS and the success we’ve had this year in our church buildings. I really hesitated to write about it because I know I will get at least one response from a well-meaning friend about something that will cure it all (often some supplement that they are selling). I know some of my family members think I have just given up because I accept that my life is different than the norm. I’m going to keep this article in reserve to send to those who think they have all the answers. Thank you, thank you, thank you.

    Reply to this comment

  3. carol

    01. Dec, 2009

    When you are desperate for recovery from MCS, and you think that you are already doing everything that you can to be well and you’re still not well, it’s so easy to fall prey to glowing promises. Thanks for the “Give your head a shake” words of advice.

    I do believe though, that we can help ourselves “to some extent” by retraining our brains, but the foundation must be set with avoidance of chemicals and a healthy lifestyle. The brain retraining takes a lot of concerted effort and dedication. That just goes with the territory. But, no one should be charging outlandish prices for their advice or services if they truly want their methods to reach and benefit the multitudes of sufferers.

    Best regards
    Carol

    Reply to this comment

  4. julia

    01. Dec, 2009

    Do not quite understand why it is one or the other. How do we know that we do not have the power to heal this or how do we know that there are not miracle cures out there. In other words, this article is claiming to know what the truth is -what does heal- what does not heal and also says what is the only way to heal. We all have our own truth and our bodies are all very different. We are also spiritual, physical, mental ,emotional beings. For myself, when I have cleared deep issues, toxic chemicals or viruses start to come out of my body, much like peeling an onion. This is a wonderful article from one person’s point of view. One persons point of view is not truth. Everyone has their own truth. What is truth? How do we know the cure for MCS is total avoidance? How do we know it is not? I respect the authors viewpoint, and yes of course there are scams out there.

    Whoever undertakes to set himself up as a judge of Truth and Knowledge is shipwrecked by the laughter of the gods.
    Albert Einstein

    Reply to this comment

  5. linda

    01. Dec, 2009

    The word CURE has been used, and anyone who is either so uninformed or deceptive as to call their program a CURE needs to be approached with extreme caution.

    If people market their programs honestly, describing the applications in a well researched, thought out, and honest way, accepting the limitations (as there are limitations to everything) etc, none of us would have a problem with them, and might in fact encourage some people to pursue them as a way to relieve some symptoms, as there is SOME merit to these kinds of exercises and practices.

    Calling them a cure is just out and out false, and not only that, it gives false hope to people who are either too ill or otherwise unable to properly research things for themselves.

    I’m all for intelligent conversation about the merits and limitations of what people do to improve their quality of life. There are a lot of different methods and approaches that help. Articles like this are sometimes necessary to get some people to think about why putting all their eggs in one basket may not be such a good idea.

    Reply to this comment

  6. Jeanne

    01. Dec, 2009

    Susie, Linda, and Lourdes,

    Thank for getting this information on the “Ten Warning Signs of a Scam” posted as widely as possible. I have blogged, tweeted, sent Facebook messages, emailed friends, etc about various health-related scams before. This is a serious topic that warrants serious attention.

    There are few things that upset me more than false cures. I see and hear false cures all the time in my “travels” online because of the many different conditions I have (which include, but are no means limited to, MCS, fibromyalgia, endometriosis, and numerous other chronic conditions) and the type of sites I frequent being “targeted” by scammers.

    Before I comment further on the “Ten Warning Signs” themselves (in a general sense, without getting into the amygdala retraining issue), let me take a moment to note (for those unaware) that I was recently attacked on Twitter (a site I no longer use after electing to close my account) after I, along with three other bloggers, advocated for patients with endometriosis by suggesting that it is wise for patients to consult with their own doctors before purchasing a nutritional supplement advertised online. (Radical idea… I know).

    While this suggestion may sound pretty bland and, frankly, common sense, it was the first in a chain of events that led to a full blown attack on multiple bloggers, including me. I was labeled a “pessimist” and told that I have no business speaking on behalf of endometriosis patients.

    Never mind that I’ve lived with endometriosis for 27 years and the person telling me this was a man. Never mind that I never claimed to be spokesperson for the endometriosis cause.

    The point is that I was, for not the first time since I’ve been a blogger, painted as a pessimist. Prior labels thrown at me include “hope-killer”. I have a reputation for warning people when I see trouble, false cures, outrageous claims, people/companies exploiting the ill, etc.

    Anyone who reads my blog for any length of time knows that I work very hard to be the antithesis of a “pessimist”… but, apparently, anytime one questions a purported “cure”, he/she risks being labeled a pessimist or accused of killing people’s hope. No, I just like to be realistic and fact-based.

    That said, I greatly appreciate the Top 10 list above. These steps could help not just patients with the illnesses listed but patients with so very many chronic illnesses!

    So, THANK YOU, for compiling this wonderful list of claims and phrases to be on the lookout for. The way you worded this Top 10 list is spot-on. I found myself nodding my head as I read it. A great, comprehensive list presented in an easy-to-read 10 step format to make it easier for people to spot scams.

    I am not up on the specifics of the amygdala retraining matters and won’t comment specifically on them other than to say that if the claims being made by individuals/people fall into the categories in that Top 10, it seems common sense to me that it is wise to seriously question the claims.

    I love the Environmental Working Group and I’m certainly all for getting politically active to promote health changes.

    Again, I am not familiar with all the details of the amygdala retraining but I wish to point out that I do not see “meditation” as a waste of time by any stretch of the imagination. Sadly, words liked “meditation” are so widely used/over-used that the term means far different things to different people. Similarly, it pains me to see phrases like “alternative medicine” and “complimentary medicine” get a bad rap when unscrupulous companies totally misuse the terms.

    Acupuncture would be defined as “alternative medicine” by many. With all of my many chronic illnesses (and the specialists that go with them) and with no disrespect to any of those specialists, my acupuncturist has helped me more than all of my specialists combined. It was from my acupuncturist that my husband and I took meditation classes that help me coping with ALL of my (incurable) illnesses.

    I do not understand why a post giving people excellent warning about how to reduce their chances of getting tangled up with scammers and people peddling false “cures” that exploit patients has resulted in the attacking responses that I had heard needed to be deleted. This Top 10 list is a fantastic road-map for avoiding the scammer potholes. I am deeply grateful for this list. While I and other blogger friends of mine have written about scammers and those claiming false cures before, this list was a refreshingly concise one that covered some of the most common and dangerous scam methods out there.

    As far as Linda’s comment… I agree with it word for word.

    The bottom line is that I believe anyone who is interested in protecting patients’ safety and rights will appreciate this no-nonsense Top 10 list because it captures the complicated, ugly, unethical, dishonest world of scammers and false cure peddlers and “calls them out on” their methods.

    This list is a huge service to the chronic illness community as a whole.

    I believe anyone getting hung up on details of what the amygdala retraining does or doesn’t do is missing out on the much more important point that we have here in front of us a road-map for averting trouble, in general, with online individuals/companies pushing their goods as “cures”.

    Job well done ladies!

    Jeanne

    Reply to this comment

  7. Lady Itchalot

    01. Dec, 2009

    Thank you for this thought-provoking article. I appreciate the concern and thought that went into the writing of it.

    For the sake of looking at both sides of the issues, I would like to give my opinions too.

    Ten Warning Signs of a Scam

    1. The Promise Of A Quick And Easy Cure
    ***Yes, compared to not getting better, this sounds quick and easy! My thinking on this is that this treatment is to be used in conjunction with all other protective and supplementals that we already do, until we know that this treatment is working. Neuroplastic exercises for other incurable illnesses, such as stroke lesions and ADHD, seem to take several sessions of 20 minutes daily for over 60 days.
    When I was reading “The Brain that Changes itself” I remember I got quite excited learning about Taub’s Constraint Induced therapy for paralyzed people, and then when reading about OCD, I wondered if this could be done for mcs:
    p173
    “One can see that Schwartz’s technique with OCD has parallels with Taub’s CI approach to strokes. By forcing the patients to “change the channel” and refocus on a new activity, Schwartz is imposing a constraint like Taub’s mitt. By getting his patients to concentrate on the new behavior intensively, in thirty-minute segments, he is giving them massed practice.”

    So, although improvements may be noted at the weekend sessions, I doubt very much that one could call oneself cured without the mass practice.

    2. Presents Unproven Patient Testimonials & Emotional Appeals Instead Of Science
    ****Maybe it’s because the science of neuroplasticity is so young, so in its infancy, that the studies just aren’t out yet. Besides, who is volunteering to do studies on people with mcs?

    3. Claims To Cure Many Ailments Which Have No Cure In Medical Science
    ***Cancer has no cure. But I’m glad that my mom didn’t let that stop her from trying what was available to her at the time. Ditto for my nephew.

    4. It’s Not Sold In Stores
    ***True. Neither are cancer treatments.

    5. It Has Undisclosed Ingredients Or Content
    *** This is problematic. I understand why they do it; it is their income maker.
    One particular website using neuroplasticity to treat mcs, and cfs, uses the following treatments:
    This 3 day training involves:

    * Limbic System Neuroanatomy
    * The relationship between all forms of stress (physical, mental, emotional) and brain function
    * The relationship between impaired limbic system function and Multiple Chemical Sensitivities, Chronic Fatigue Syndrome, Fibromyalgia, Chronic Pain, Anxiety Disorders and a host of often “mysterious” illnesses
    * Cognitive Behaviour Therapy
    * Core Belief Counselling
    * Life Coaching
    * Neuro Linguistic Programming
    * Self Hypnosis
    * Guided Visualization
    * Cognitive Restraint Induced Therapy
    * Somatic Exercises
    * Brain Stimulation Exercises

    The cognitive Restraint Induced Therapy is the one that excites me. That’s the one that I wondered had been developed when I read about Taub and Swartz. Neuro Linguistic Programming is something I have just recently heard about and haven’t had the opportunity to research. Everything else is not new. Brain stimulation exercises are available online.

    6. You Have To Keep At It To Get Results
    ***Yes, because you are retraining your brain.
    7. It Doesn’t Work Because You Did It Wrong
    ***I haven’t heard this. In fact, of the two programmes that I am considering, guidance is given even for the at-home portions, and refunds are given within a certain time frame.

    8. Science Hasn’t Even Bothered To Discredit It (No Threat To Pharmaceutical Sales)
    ***Interesting! Something I hadn’t ever considered!
    Is it too new a science to have come under the lens of the pharmceutical sights?

    9. The Seller Lacks A Medical Degree Or Similar Qualification
    ***Again, each of us must choose to check out the qualifications. I don’t necessarily think a medical degree always is a necessary qualification, but then I have had a lot of success with energy medicine type of treatments. (which may be a form of cognitive restraint induced therapy! aha)

    10. It’s Too Good To Be True
    ****Again, up to the individual to check, I guess. Thank you for setting out these guidelines. I think that it is important for individuals to look at all sides of a proposal before signing!!!

    Another idea that maybe needs to be talked about is the connections within the limbic system and what they do.
    Yes, the amygdala is the “fight or flight (or freeze)” center, but it has other functions. I don’t have my notes with me but I remember learning recently that it monitors the hippocampus. The hippocampus is the birth place of new neurons. So, does it stand that if we can correctly trigger the amygdala to fire up the hippocampus to send out new cells, then we may be stimulating new brain growth? (not well worded, sorry.)

    Thanks again for your stimulating and provocative article.
    Lady Itchalot

    Reply to this comment

  8. cr

    01. Dec, 2009

    Well said and thought provoking. The comments are excellent.

    Reply to this comment

  9. cr

    01. Dec, 2009

    While I haven’t read about the ‘miracle cure’ you are talking about, it seems that in talking about retraining the brain they are also promising CURE. In the sixties I worked with a large group that was experimenting with repatterning the brain….a doctor led study. The child wasn’t supposed to walk or talk, but at the end of a year was smiling…that was all. But many other cases since both in injuries and strokes have proven to ‘retrain’ the brain. I am not scientific, but totally believe that regeneration of the brain cells is possible. I have worked very hard from the onset of my injury to do just that. Though it may not ‘cure’ anything it enhances the quality of life…but you don’t have to spend alot of money on the therapies…it is free.

    Reply to this comment

    • Darlene Rebechi

      23. Apr, 2010

      “But many other cases since both in injuries and strokes have proven to ‘retrain’ the brain. I am not scientific, but totally believe that regeneration of the brain cells is possible”. -cr

      The case studies of stroke damage to the brain and regeneration as shown in the “A Stroke of Insight” story of the Brain Doctor that documented her recovery, are, for the most part a natural recovery. In that, no ‘training’ methods were used, the recovery was not part of a medical procedure, rather a recovery system within the individual’s own psyche.

      The same inner recovery for stroke effects’, also applies to me. I recovered, but there are no miracle cures for brain damage from strokes, only miracle’s of the soul, my take. On ‘other injuries’ , that term is too vague for me to address. Regeneration of brain cells is possible, and someday our scientist’s will understand, but that day has not dawned, as far as I know…

      Reply to this comment

  10. Susie Collins

    02. Dec, 2009

    Aloha Lady and cr, I’m sorry for the delay in releasing your comments, first timers’ comments are held in moderation. I was away from my office all afternoon and just now catching up.

    Thank you all for your sharing your thoughts on this.

    Reply to this comment

  11. varda burstyn

    02. Dec, 2009

    Hi everyone,

    I have done Annie Hopper’s Dynamic Neural Retraining System workshop and I actually have a lot of very good things to say about it. Doesn’t seem as though anyone else on this thread has, and I think that’s the first problem with all the purely negative comments. Having said that, a few points:

    1) The word ‘cure’ was, in my opinion, a wrong choice and I’m sorry Annie used it. She told me that initially she used it because when she came down with MCS she used to google the net from time to time searching on ‘cure for MCS’, and wanted people to find her work if they were doing the same. In fact one of the women in the workshop I took — and the one who got the most dramatic results at the beginning as it happens — found Annie in this way. Regardless, it’s not a word I’m comfortable with.

    2) That said, I don’t think it’s correct to imply or state that no-one ever gets better from MCS. That’s an incorrect overstatement in the other direction, and not helpful. I know several people who, with a variety of approaches, recovered to a large extent from severe MCS: they were able to resume a normal life, complete with work, travel and activity in public places, though were always careful in how they lived. My mother was one of them. Our family had a lot of resources then, we built her a safe house and gave her a lot of help. These were KEY to her improvement, no question whatsover. But the two therapies she credits with taking her out of stablilization into recovery were the Alexander Method and homeopathy (conventional, not antigen therapy). If you read Anat Beniel’s books, you will see that today she explains the effectiveness of the Alexander Method in terms of neuroplasticity, and I believe that it functions to calm and regenerate the limbic system in the brain. Its principles were evolved empirically by a physicist decades ago; its explanation came later. One of the other people I know who really was cured — almost unbelievably so — did something called NMT – Neuromodulation Therapy, and eventually became a pracitioner. I tried it — but I was too stressed at that time, and it didn’t work for me. It did for her, though — and again, involved work with the brain.

    3) the DNR system is NOT ‘amygdala’ retraining but limbic system retraining and — key, key point, this involves the growth of new neuronal pathways. The limbic system includes not only the amygdala, which is activated at the end of a cascade of neurological and neurochemical events, but also the cingulate cortex, the hippocampus (indeed the birth place of new neurons) and the hypothalamus. It’s a complex and interpendent system and the Annie’s method seeks to affect it in its entirety.

    4) Lady Itchalot and I had a very similar experience: we read Norman Doidge’s The Brain that Changes Itself, and found the same principles and possibilities very exciting as potential aids for the chemically sensitive. I had read about neuroplasticity for a long time — 5 years at least — and had wondered from the get-go about its potential to assist us. I really think it’s important to encourage people who work with neuroplasticity to develop ways to help people with MCS, rather than dismiss the fantastic new understandings and therapies that have evolved from neuroscience as not helpful for us. MCS is many things — for some of us, like me, big immune system and infection issues are challenges too, and FM — but it is a neuroinflammatory illness, a toxic injury to the brain, so why wouldn’t we seek to use brain science to assist ourselves? I really urge folks to look into this field, and check out Jill Bolte Taylor’s My Stroke of Insight to see what astounding rebuilding of the brain is possible with the right approaches.

    4) I can tell you that this is not meditation and meditation does not do the same things. Healing with neuroplasticity involves intense focus where meditation involves mindfulness — a different kind of attention. DNRS involves mobilization of tremendous and active mental energy where meditation requires relaxation and detachment; likewise DNR system asks for dedicated, conscious and targetted repetition — this is a different use of the brain (though it makes meditating easier for me) so it’s not old wine in new bottles and the two should absolutely not be confused. You have to practice the DNR System exercises for at least an hour — not half an hour — a day. Furthermore, improvement also depends on being able to reduce certain types of stress during the training period, so that the new pathways of neurons being formed are not overwhelmed with the brain biochemistry of stress (from key sources you identify for yourself during the learning period), so that they can, in time, become dominant.

    5) I am about four and a half weeks out of my workshop experience. The principles of neuroplasticity require practice, practice, practice. As anyone who has learned a second language or a musical instrument will appreciate, it takes a long to time to form new pathways in the brain that make us capable of speaking or playing, and it’s the same thing with the DNR system. In any case, I have severe MCS — not the very worst, perhaps, but definitely in the disabled range. Since I have no independent income or disability insurance, I have to work for a living, which has been very, very hard, and have some stressful volunteer work as well. This means that while I have been able to practice about 50 minutes a day, I haven’t been able to get my stress triggers down where I want them to be, i.e. not perfect conditions for the DNR System method. So here are my results to date:

    * lifting of depression and sense of doom, linked to many changes in my mental life, including recovery of happy childhood and other memories that were inaccessible to me — amazing; but also just a sense of well being I haven’t had in ten years. And every time I do my exercises (3 or 4 times a day) that sense of well-being grows. In and of itself, for me personally, this change in quality of life has been transformational, and worth every borrowed penny it cost to do the workshop.

    * improvement in sleep — a huge issue for me — I am now sleeping in my bedroom (had slept on the couch for four years prior) and having dreams that are of neutral and, just a few times, even slightly positive affect. Had nothing but anxiety dreams and nightmares for ten years prior — nearly drove me mad.

    * less inflammatory pain in a number of places; FM there, but less severe.

    * am wearing clothes washed in my washing machine and dryer — which I air out for a few days before donning them. A couple of years ago I lost use of those machines, and had been washing my clothes by hand and rinsing literally for hours at a time — and of course, developed horrible arthritis in my fingers. My hands are immensely better, and I’ve got 8 hours a week back. Hard to overstate the benefits of that result.

    * I have chemical reactions to most of the things I reacted to before. But by and large they are somewhat less severe, and, key, I recover much faster. Last Saturday I was able to attend a party of fifty people for my father’s 85th birthday, able to be mistress of ceremonies, able TO ENJOY IT and keep my wits about me, but got a hit for sure. Six weeks ago, I would not have been able to enjoy this or have the energy to do what I did, but I would probably have done it anyway and it would have taken weeks to recover, and maybe involved a big bladder infection, and so forth. I woke up Sunday morning prepared to hit the oxygen tank and deal with a huge case of chemical depression, but didn’t feel depressed at all, and didn’t need oxygen either. Had a nice breakfast, went for a walk, got to work. I felt okay, really okay. Tomorrow I have dental work — we’ll see what that will bring.

    So what to make of all this? I do more than DNR for my health. I live in a house that used to make me sick, but which is much better thanks to all my and my husband’s life savings plowed into mold remediation and rebuilding. Still I’m sleeping in the bedroom now and wasn’t before…I eat mostly organic food, I take a lot of supplements, including B12 and glutathione when I can afford it, and I spend a lot of money of probiotics and some prescription bioidentical hormones. I do avoid as many exposures as possible — but I do go to meetings, spend time on the computer and so forth for work — and in the past have paid terribly for these. Now, not so bad. I truly don’t whether I would have had such positive results had my house been the mold pit from hell it once was. Don’t know if these changes will hold and whether I’ll continue to improve. However, there have been truly enormous changes for the better in my quality of life, and my husband is a very happy man as a result.

    You know, while avoidance makes us all feel better, we can’t all avoid, for all kinds of reasons, and need help with reducing the severity of chemical reactions. In terms of what makes us better, there really is a huge variation. The big study by Pamela Gibson that is quoted so frequently (Perceived Treatment Efficacy for Conventional and Alternative Therapies Reported by Persons with Multiple Chemical Sensitivity, Pamela Reed Gibson, Amy Nicole-Marie Elms, and Lisa Ann Ruding
    September 2003 • Environmental Health Perspectives) showed that, apart from avoidance and a safe house, which helped 95% of respondents, everything else, incuding the great standards of treatment, got mixed reviews. Some therapies helped some people; other therapies helped others. If memory serves, getting a 15%-30% score was good for any given therapy. If the DNR system helps that number of people; and if it helps them on a continuum of improvement — from improvement in sleep and depression all the way to significant reductions in reaction — it’s something we should be open to, not reject out of hand.

    Finally, on its cost: $600 if you register early, $800 if not, for a three day intensive with a lot of individual pre and post consultation by Annie herself, for skills that, at least for many who practice regularly, really improve their lives. Every IV I have done (and between chelations and nutritonal IVs I’ve done well over 300 in ten years) has cost between $100 and $150, for an expenditure of tens of thousands of dollars; sauna treatments, antigen therapy (my God, antigen therapy! so expensive), glutathione, B12, and so many other treatments just to keep putting one foot in front of the other — I feel I got my money’s worth and more from Annie’s work. She needs to make a living too. Environmental docs charge lots and lots of money (more than she does) and naturopaths have a license to print it — I’ve gone broke over the years working with them, osteopaths, chiros, cranial-sacral, accupuncture (which is really good for me if I do it three times a week) — a bloody fortune and you keep having to go back for more. I’ve learned a lot, but I’ve never really got better, and never had the dramatic improvements I’ve had to date, even with imperfect performance, with Annie’s method. And never had power within my own hands to improve my moment-by-moment experience.

    I’m not pushing this — it’s early days, and everyone has to figure things out for themselves. It’s new work, and there is no body of research to turn to yet. And I do think that the safer one’s house the more likely one is to benefit. But it distresses me to see thiw work dismissed out of hand. I don’t think it’s a scam and I think Annie has both remarkable skill and great deal of integrity. We may have a new tool — and a general approach, neuroplasticity — of great potential, and certainly we should encourage people to develop it.

    thanks,
    Varda

    Reply to this comment

    • Darlene Rebechi

      23. Apr, 2010

      Verda, “Jill Bolte Taylor’s My Stroke of Insight” :Exactly.

      I would not suggest that you use her story…did you see her tell her story? or read her book? She emphases the remarkable recovery, that after-the-fact, she is attempting to gain understanding of which, to add to the medical journals.

      I don’t question your improvement, I question which part of it was based on getting results by intention. Intention is part of your inner terrain, and creates dramatic changes, but it is the intention, not the program. Point is, where you find the intention can be quite personal, and not necessarily a result of neuroplasticity. Some, dare I say it, find intention in faith. Faith is the belief in things unseen…miracles.

      Reply to this comment

  12. Leslie

    03. Dec, 2009

    I am all for cure. I dont have any huge argument for it except that I have seen myself shake off symptoms over the years that never returned. Also I dont care how i am cured, brain, not brain, scam, no scam…it can come anytime in any form and I will take it. I think we are focusing on the word “cure” too much and not focusing enough on the fact that there probably are things out there that can help us improve, aside from avoiding chems. I bet alot of us experienced at least some (even tiny) improvement somewhere along the line from some pill, treatment, experience, thought, etc…
    when it comes down to it, we have no idea why we suffer from MCS, except that chems are freaking gross. I am willing to try any treatment that I can afford, and is not invasive.
    BTW- my biggest improvements were from fresh air, clean drinking water, and a chem free home. ;)
    xoxo

    Reply to this comment

  13. Bobby

    03. Dec, 2009

    Wow! For a simple article dealing with spotting scams, I am surprised at all the rancor. Maybe I read it incorrectly. What I took from it is: there is never ONE way to deal with an illness as so many theories claim. Because each individual has become ill from different causes, there can never be ONE. I have been ill since 1989 (diagnosed) before there was the internet. Trying everything that came down the pike was the norm back then because you could not get any instant input from others. In fact, you usually didn’t even know anyone else who had EI/MCS. So from someone who has tried and failed with many, many therapies/theories/suggestions etc, I consider this article a great “heads up” to everyone. Just my opinion!

    Reply to this comment

  14. Ruth

    05. Dec, 2009

    Very well said, Varda…thank you so much.
    This is a hopeful and refreshing addition to this forum topic. I wish you well and continued improvements in your health.
    God bless!

    Reply to this comment

  15. Abigail

    09. Dec, 2009

    Thank You Varda, for your excellent notes. And so happy to hear of your successes to date. Your explanations mean that I dont have to write so much.
    I took Annie Hopper’s DNRsystem.com course in May 2009. I have been successful in eliminating MCS reactions by doing her workshop, with immediate great results. It is now December 2009, and I am still doing fine. I have hardly done any homework, and it remains effective. I hardly smell things now, and can go shopping, travelling, and so on with no problems.
    I was sick with MCS for 10 yrs.
    I think the article about scams is important to bear in mind, and as has been noted here, Neuroplasticity is new to most people, even though Dr Bruce Lipton studied and wrote about The Biology of Belief, yrs ago, as did Dr Candace Pert, write Molecules of Emotion, yrs ago. I am concerned that the article may delay some people with chronic diseases and disorders from getting the “cure” they desparately search for. And, yes, we all want to be cured of our debilities, if at all possible, instead of short-term “fixes”, like acupuncture, herbs, etc etc. that keep us all in the poor house and chasing after a “cure”. The path is strewn with people who have tried all the various “fixes” out there – talk about scams!! I spent so much on my health, I was never able to afford a vacation!
    I can heartily recommend limbic system retraining with Annie Hopper.
    Abigail

    Reply to this comment

  16. linda

    09. Dec, 2009

    The problem is with people calling anything a cure when there is no evidence of any such thing. Call it a therapy that can benefit some people, even many people, just don’t call it a cure.

    The merits and benefits (or not) of any protocol, practice or therapy were not the point of this article.

    Reply to this comment

  17. Ruth

    10. Dec, 2009

    Thank you, Abigail, for your comments on
    results you got with the DNR System program. When I first posted this topic on the forum, I was so hoping that there would be some folks like yourself who would contribute to it. It is unfortunate that there was so much focus on the word “cure”….maybe we can put that to rest now, since Ms Hopper, herself, has said (in report on Planet Thrive) that she regretted the use of that word and was correcting it in her promotionals. Maybe we can get back to hearing more about the results people are having. Again,thanks so much for contributing to this discussion. I think that most of us with MCS take a thoughtful, wait-and-see approach to any new therapy that offers hope for a better quality of life, and that is certainly a good thing. One of the things that would be helpful to all of us, would be if you were willing to provide more specifics on
    what you actually did to achieve your positive results, if you would, please.

    Reply to this comment

  18. Betty

    21. Dec, 2009

    Not so fast! Has anyone, including the writers of this article actually tried the program. Ashok Gupta’s program is not expensive, so the very least you could do is try the program before declaring it to be a scam, particularly since his program has helped thousands all over the world.

    Take a look at Julie Genser’s rebuttal to this article at Planet Thrive. http://planetthrive.com/2009/12/mcs-brain-retraining-medical-scam-or-breakthrough/.

    Reply to this comment

  19. linda

    21. Dec, 2009

    This post was about people who claim their method is a cure without any solid evidence to back it up. It was not about the merits or shortfalls of various methods, as that is a different discussion.
    If someone calls something a cure, they better have indisputable objective evidence, and be able to say exactly who will and won’t be cured by it. Otherwise, don’t call it a cure.

    Reply to this comment

  20. Betty

    28. Dec, 2009

    No, this post (article) was about calling something a scam without thoroughly checking out whether or not it is actually a scam.

    While Annie initially called it a cure, she did so because of her personal experience with the program in that she felt that she was cured. I believe that was at least part of her solid evidence in her opinion. While healthy skepticism is encouraged when trying any program, to call something a scam without even trying it is unfair. And it is in fact about the merits or shortfalls, because if a person is calling something a scam, the merits or shortfalls are intrinsic to the discussion. If you cannot discuss the merits or shortfalls, then you have no business calling someone a scan artist.

    Following is an excerpt from Julie Genser’s article on Planet Thrive where Annie recanted the term “cure.” I courage you to read that as well as her interview with Annie Hopper.

    “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.”

    Reply to this comment

  21. linda

    28. Dec, 2009

    We are all very much relieved that Annie no longer calls her method a CURE for MCS.

    The debate has allowed a bit more information to come out so that some people are better able to make informed decisions.

    Unfortunately it won’t stop those who are desperate to be cured from having false hopes.

    I sincerely hope that all people find and are able to afford whatever methods and treatments they need to recover from the horrors of life with MCS.

    Reply to this comment

  22. Susie Collins

    28. Dec, 2009

    I think some basic definitions are needed.

    A scam is a fraudulent business plan, intent is not necessarily a qualifier for it being a scam or not.

    Being fraudulent has to do with implementing a deceitful business practice. Deceit has to do with making false claims.

    Cure is defined as a restoration to health. Claiming a therapy is a cure for an illness is the same as saying the therapy will cause a restoration of health, a full recovery from the disease– there isn’t really any room for qualifiers when you use the term “cure” in selling a therapy. It’s like saying you’ll be 85% pregnant.

    I think the fact that Ms. Hopper removed the term “cure” from one of her websites following public criticism for her use of the word indicates that even she understands that the term is not appropriate in regards to the therapy she’s selling.

    But there are web pages still up in which Ms. Hopper makes claims of cure, main site here http://www.anniehopper.com/articles.htm

    Articles on that website:

    MCS Cure Part One http://www.anniehopper.com/capnews_mcs_cure_part_1.html

    MCS Cure Part Two http://www.anniehopper.com/capnews_mcs_cure_part_2.html

    Reply to this comment

  23. Sal

    28. Dec, 2009

    Well said Susie! You hit the nail on the head!

    Though Ms. Hopper’s therapy was not the topic of this article, I agree that the fact that she removed the term “cure” from one of her websites indicates that she realized the term “cure” is not appropriate.

    To protect our financial interest, health, and overall well-being, it is so important that we are able to make rational judgments and weigh treatment possibilities based on actual facts about them, rather than uncorroborated claims.

    Thanks for all you do for us Susie!

    Reply to this comment

  24. Renee

    05. Jan, 2010

    It appears she’s taken those two links – Part 1 and 2 down. Can’t access them.

    Reply to this comment

  25. Susie Collins

    05. Jan, 2010

    Thanks, Sal.

    Aloha Renee, yes, it appears those pages have been taken off the web since my Dec. 28 comment, which shows Ms. Hopper is probably tracking this post and responding to the criticism. It’s all good. However, I still have some problems with her emphatic position that she has proven MCS, Electro Magnetic Sensitivities and Fibromyalgia are due to an acquired toxic brain injury that impairs limbic system function and synaptic function. This may be correct but only a partial explanation and only for certain types of brain-derived symptoms, not the peripheral sensitivities that current peer-reviewed research shows also occur in most MCS patients. Further, the flyers for Ms. Hopper’s workshops that I’ve seen have no qualifiers for the possibility that the therapy may not work for some people simply because their chemical injuries may not fall under the spectrum she addresses in her therapies. Caveat Emptor, which was the whole point of the op-ed.

    Reply to this comment

    • Darlene Rebechi

      23. Apr, 2010

      Susie,
      “MCS, Electro Magnetic Sensitivities and Fibromyalgia are due to an acquired toxic brain injury that impairs limbic system function and synaptic function.”-as suggested by Ms. Hooper

      The only evidence on this is particular to a sub-group of patient’s in the studies for CFS/ME. Those that have had [not due to] cognitive brain injury. That sub-group are not as inclined to recover into the normative CFS/ME group, which doesn’t imply normal health.

      Reply to this comment

  26. Patricia

    15. Jan, 2010

    “More than one health scam purports to cure CFS and MCS by retraining the amygdala to eliminate fear.” Linda Sepp and Lourdes Salvador

    “The merits and benefits (or not) of any protocol, practice or therapy were not the point of this article.” linda

    These are two completely contradictory statements. As far as I’m aware, there are only two protocols that would be described as “retraining the amygdala”. Those would be Ashok Gupta and Annie Hopper. You specifically focused on amygdala retraining in the main body of your article and then used your Ten Warning Signs of a Scam to link those two people to the idea of being scams.

    “Examining the various amygdala retraining claims, it is easy to see that all ten warning signs of a scam are present”.

    You simply can’t claim that the merits and benefits (or not) of any protocol, practice or therapy were not the point of this article. If you actually stand by that statement, please tell me what the point of the article was.

    Your yourself make a number of unsubstantiated claims: “No Toxic Chemicals=No Toxic Injuries=No Illness”. Since I became ill with MCS in 1985, my brain scans have all shown lesions consistent with post-viral encephalitis. I have no doubt that chemical exposures played some part in my illness but the damage to my brain affects the functioning of my entire endocrine system and the central nervous system. Did the opportunistic infections and chemical hypersensitivies result as a symptom of the brain damage. It’s likely. Even if a person was never exposed to chemicals or viruses, a fungal infection can ravage the central nervous system because fungi release neurotoxic chemicals. Many people with MCS move to Arizona or New Mexico, live in safe housing and don’t expose themselves to any chemicals at all. Unfortunately, Arizona and New Mexico are the two state where you are most likely to contract Valley Fever, which is a serious fungal infection contracted by just breathing outdoors.

    You make other statements as if they were fact when they are no more than conjecture on your part. Your misinformation on what you refer to as “amygdala retraining” is so prevalent throughout the entire piece that it simply staggered me as I read it. It would seem you haven’t bothered to do any reading on neuroplasticity, or you read it and didn’t understand it, or you read it and dismissed it as junk science.

    I would highly suggest you read The Brain that Changes Itself by Norman Doidge, MD and read it thoroughly and with great care. Neuroplastic therapy may be an invaluable part of recovery for people with MCS. As you read Doidge’s book you’ll understand why that might be the case. You’ll also learn in the book that almost all the doctors and researchers he interviewed were relentlessly discredited by mainstream neurologists until there was so much scientific research proving that the brain can be rewired that they eventually had to accept that neuroplasticity is a reality. One of the doctors who was dismissed for years is the inventor of the cochlear implant. All of these doctors have MDs, PhDs or both and were ridiculed for years despite their credentials.

    Annie Hopper is meeting with Norman Doidge, MD this month as he wants to examine her protocol. The man who wrote the book that introduced neuroplasticity to the lay person wants to examine Hopper’s therapy. We will have to see where that leads. I hope it leads to scientists studying the brain maps of people pre and post-training so there is hard, scientific evidence of whether her protocol is actually neuroplastic therapy or not. My personal feeling is that if Dr. Doidge could find scientific support for Hopper’s therapy or be able to definitively discredit it scientifically, the sooner the better. I have no idea if Dr. Doidge is in contact with Gupta.

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

    Like Gupta and Hopper, you have no medical degree or similar qualifications, no scientific evidence to back up this claim and, it would appear to me, no comprehension of the science of neuroplasticity and the brain’s ability to affect organ function and cell growth and health. I’m not talking about positive thinking exercises. I’m talking about the process of creating new neural pathways in the brain that override the faulty wiring in a damaged brain. You have absolutely no scientific evidence to back up your above listed claim yet you insist on scientific evidence from anybody who uses “amygdala retraining” therapies. That’s a pretty big double standard you’re using.

    “In response to amygdala retraining, a respected colleague said: “All the brain retraining programs are just giant frauds designed to suck money out of the sick and desperate.”

    My uncle recently returned from Dr. Taub’s Rehabilitation Clinic in Birmingham, Alabama. Dr. Taub uses Constraint Induced Therapy, which is a neuroplastic therapy that creates new neural pathways in the brain. My uncle was in a wheelchair when he left here. He came back walking and with the full use of his stroke-affected arm. He continues to do the neuroplastic training exercises at home and continues to make improvement every day. Is Dr. Taub’s program just a way to suck money out of the sick and desperate? He has volumes of scientific studies and research to back up this therapy. You might want to stop using terms like brain retraining, which is a very non-specific term, and use brain rewiring or neural plasticity training instead. Although first you would have to research and understand exactly what neural plasticity training actually is and the science that supports it. The Taub therapy has one similarity with Gupta and Hopper’s only it is much more intensive: you do the Constraint Induced exercises 8 hours a day, 7 days a week for 3 weeks straight. That’s intense. Anybody who isn’t motivated to do the work isn’t going to make any improvements. Anybody who is unwilling to do the intensive exercises doesn’t stay at the Taub Clinic. People react to serious illness in different ways. Some people give up. Some people accept where they’re at and refuse to believe they could get any better than where they’re at. And some people, like my uncle, read the science and jump in and try it. He didn’t have to believe the exercises would work in order for his arm and leg to start regaining function. He simply had to be willing to put in the time and effort required to make substantial neural changes to his brain that allowed his almost completely paralyzed arm and leg move again.

    Once again, I would have to refer you to The Brain the Changes Itself for you to understand the science that underlies how every thought we think changes our brain wiring and our body chemistry. Neuroplastic therapy is about creating new neural pathways to take over the work of dead or damaged brain cells. The exercises tend to be physical and mechanical, such as the movement exercises for stroke patients. They also involve very subtle exercises that map how and where our brain is firing when we think. So what we think and how it affects our body can be mapped scientifically. We all carry thoughts and ideas that go back into our infancy. Those thoughts and ideas create very real connections in the brain and some of those connections created in the brain the entire physical system.

    I understand that those of us with MCS have been accused of having an illness that is “all in our heads”. It turns out that a great deal of this illness might just be in our heads in faulty brain wiring. Neuroplasticity has shown that the brain structure and our thought processes both affect our physical health. There is no such thing as a psychosomatic illness because there is no separation of the brain, the mind and the body. If you are unwilling to even consider that consistent thought patterns can adversely affect the brain, central nervous system and the rest of the body then you’ll stay stuck in a way of thinking that has already been invalidated by science. The fact that neuroplastic therapies are already being researched on schizophrenics doesn’t mean that people with MCS are suffering from a similar mental illness. It means that the knowledge of brain plasticity has expanded so greatly that it might be possible to reduce the worst manifestations of schizophrenia by applying very subtle electromagnetic pulses to an affected person’s brain using electrodes that are place on the persons scalp. It’s not electroconvulsive therapy. It’s so much more subtle than that it’s no comparison. The electromagnetic pulses create new neural paths mechanically because the mentally ill person cannot do the work themselves due to reduced cognition of self and the world around him or her.

    “Having a safe, nontoxic home where one can avoid exposures is of primary importance. Making adjustments to diet, learning about food sensitivities, eating organic foods, drinking highly filtered water, and using targeted supplements to help repair cellular and other damage is also required.”

    I find your insistence that people with MCS should live one way (avoid all chemicals and live a very constricted life) and that “amygdala training” might help those with emotional problems because they have failed to “adapt and cope well” with this very constricted and isolating life to be insulting and patronizing to those of us with MCS, including myself, who don’t have the luxury of being able to afford a safe home, thousands of dollars worth of supplements, thousands more for air and walter filtration systems and have to work in the polluted world to have any money at all. It’s also an incredibly rigid way of thinking in that you completely rule out any way for people with MCS to reenter the “normal world”.

    In my own experience with MCS since 1985, I spent two years living in a safe apartment with absolutely no chemicals, ate an all organic diet, took a multitude of supplements and had air and water filters. I made only a very modest improvement even though I did everything you tell me I should do. Was I scammed? Are you a scammer because the advice you currently give didn’t help much at all? It sure cost my parents a small fortune. When the money ran out I was forced back to work whether I liked it or not.

    In a lot of ways I got lucky because I ended up in places where I could tolerate the building most of the time. I once almost lost a job because I couldn’t go into my place of work for a month due to somebody getting their office painted. I found a homeopath that helped enormously with my health even though I was being exposed to chemicals every day. I also started doing my own brain rewiring without even knowing that I was rewiring my brain.

    One of the most helpful things I did for myself was to stop going to support groups for MCS or even signing up to receive letters from groups like yours. I got tired of listening to everybody’s anger at the pharmaceutical companies, the chemical companies, the American Medical Association and on and on and on. I already knew about the problems with the above mentioned Big Evils. I got sick of hearing people talk about it endlessly. It was as if their illness, anger and resentments had completely taken over their lives and all of their energy was focused on avoiding chemicals and ranting against the companies they felt had put them in this dire condition. MCS is a dire illness.

    “Still others are not so happy, believing that the drug companies may be behind this discovery with nothing more than intent to market a profitable new drug. Irregardless, in the face of emerging viral evidence, XMRV is now a newly emerged threat for purported cures.” Linda Sepp and Lourdes Salvador

    Your own comment about the XMRV retrovirus comes across as paranoid. The research facility that discovered the presence of the XMRV retrovirus is a privately funded facility founded by the parents of a young woman who has CFS. The facility and its researchers have no links to drug companies. The fact that you would classify a scientific research study as “an emerging threat for purported cures” is mind boggling to me. As a person with MCS, I certainly wouldn’t want you representing me as a spokesperson.

    I was not involved in any personal attacks on you via Facebook, Twitter or any other social media. I did not contact anyone to try and discredit you in regards to MCS Awareness. I have not worked with Gupta or Hopper or used Gupta’s DVD or taken Hopper’s workshop although I may take Hopper’s workshop in March because it would seem to have significant elements involving neurplastic training. I simply find your piece to be misleading because it is so ill-informed and presents, to me, a very rigid and dogmatic way of thinking.

    Reply to this comment

  27. Sal

    17. Jan, 2010

    This article is about being alert to possible unproven cure claims. It does not address whether the sample AR program has any merit, nor does it attempt to present concrete evidence for or against AR. That would require another rather long or several part scientific article addressing AR specifically.

    Regarding AR, it is good to read in the posts above that some of the unsubstantiated cure claims have been removed from promotional materials. That’s the right thing to do until such a time when substantiation for or against AR is available.

    The Mayo Clinic is now recruiting study participants with CFS and FM for an AR program. This is good news as it will help provide some evidence as to the efficacy of AR. There is more information at the link below.

    A Pilot Study of Amygdala Retraining Program in Patients With Chronic Fatigue Syndrome, Chronic Fatigue and Fibromyalgia
    http://clinicaltrials.gov/ct2/show/NCT01046370

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  28. jason

    18. Jan, 2010

    i haven’t looked into the “mayo trial” but my experience of such things is that the outcome depends on whether the people organising it are pro or anti the therapy in question. many presription drugs have been proven safe only later to turn out as deadly. trials are bad science – you can prove or disprove anything.not only that but how can you do a critical trial for something that requires your total belief to have even its slight limited affect (which is in my opinion at the expense of real understanding and healing). only people who have an interest in this will take up the opportunity, and these people in my experience claim its working even when it isn’t, out of their desperation. the people who sell these treatments claim to know the causes of the illnesses in question here, yet very, very rarely do folk completely recover even though they put their whole heart into…why? cos they don’t understand it – belief in the false fact that they do is necessary for its very limited affect. and folk who do recover whilst doing it may have recovered anyway…if they understood, all would recover. peace…

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  29. Airy

    17. Feb, 2010

    Thank you sooooo much for writing this article. I’ve forwarded it to other friends with MCS.

    I was so gullible when I first got sick (over 10 years ago) and wasted a lot of money on miracle cures. I experienced the desperation and hope, followed by disappointment that happened when “the cure” didn’t work.

    My B***S*** detector has been going off a lot lately over new “cures” that have been popping up all over the place. I love this warning-sign list.

    Keep all the great information coming!

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  30. Bil

    22. Apr, 2010

    Just my 2 cents to add to the discussion. I developed MCS in 2005 because of a chemical spill at work. It took months to get even a tentative diagnosis, having been treated for asthma and allergies first. Both of these treatments are standard for the allopathic medical cartel, and both made my condition markedly worse.

    I spent a year taking acupuncture and other treatments and they worked, sorta, but I fell apart after only 16 hours back on my job. I was fortunate to get good advice from another longterm MCSer and put most of my efforts into avoidance, which, as I now understand it, keeps one from getting worse.

    Over that following years, each time my avoidance failed, I got worse, and I eventually had FM, CFS, a long list of food and other allergies (resulting in severe IBS), and symptoms that are like PTSD. To my doctors, I was just nuts and they hurled diagnoses at me just so much name-calling: neurotic, anxiety ridden, depressed, ….

    During this period, I came to know Annie Hopper, and we traded help where we could. She was, indeed, a mess; her symptoms were somewhat different–I have no electrical sensitivities, but she had bona fide MCS. Unlike me, she also risked some costly “cures” that failed. So, when she announced to me in great excitement that she was cured, I was skeptical.

    I should mention part of the reason for my skepticism. I have made my living over the past 40 years engaged in scientific research and teaching scientific research methods. The main flaw I see with the original paper under discussion here is that the 10 signs of a medical scam are from the point of view of the allopathic medical cartel (which, for me, includes the pharmaceutical, pesticide and fragrance industries). When the claim is made that no science is evident, what it really means is that the old-fashioned Modernist science favoured by the medical cartel is not in view. If you’re trained in allopathic medicine, then non-allophathic medicine is, by definition, unscientific. If you discover something without using the criteria of allopathic medicine, then the criteria for what counts as science will automatically discount your discovery. This is how North American allopathic physicians and the pharmaceutical industry can get away with dismissing the benefits of OTHER kinds of medicine, which, incidentally, often have a great deal of actual science behind them.

    At the same time, one should be cautious about the claims of allopathic physicians that they have a monopoly on scientific medicine. They don’t. Check out the treatments for ulcer, for instance. There are many other areas where our doctors have clay feet too.

    So, without getting too far into the history and philosophy of science, what I would point out is that the original article provides a set of point ONLY for identifying what counts as a protocol recognized by the allopathic medical cartel. It makes no evaluation of the efficacy of the protocol. And we would all do well to keep in mind that, without ANY scientific support, people with MCS have been treated very badly by that medical cartel.

    Now, at the end of March 2010, after waiting to see how well Annie did (she was my personal guinea pig), I took her workshop. I experienced a sudden shift on day 2, as though a switch had been thrown. Three weeks later, I continue to practice and my general overall health continues to improve. I invite you to go to the DNR website and check out my testimonial (No, I was not paid to do it). I think Annie has hit on something here and I think it has the potential to benefit millions of people and to shake up medicine.

    At this point in time, I think that MCS and a list of other complaints are LITERALLY all in the head, by which I mean that they are initiated in a brain injured by toxic exposures, viruses, infections, physical trauma, and emotional trauma. The symptoms are, without question, real. What Annie does is teach us to block the initial reaction from getting started. Once blocked the rest doesn’t happen and the body can heal.

    I should add that Annie is collecting data on what she is doing. She’s not getting rich doing this. Yet, she’s making a MAJOR difference in people’s lives, a handful at a time.

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  31. Susie Collins

    22. Apr, 2010

    Thank you for sharing your story, Bil. I had read it yesterday over at Planet Thrive.

    First, I’d like to clarify that the opinion piece posted above is NOT an opinion piece of The Canary Report as mistakenly stated for months on the front page and in an essay at Planet Thrive. It originated at MCS America and I simply republished here on my blog.

    The essay above written by Lourdes Salvador and Linda Sepp was based on the claims of cure for certain therapies, and the argument, which was an opinion, was laid out based on that premise. No names were used, although people really tried to twist it up as an attack on Ms. Hopper and her therapies. I myself do not agree with the every point in the argument, but the authors are entitled to their opinion. I will note, however, that immediately following the publication of this opinion, Ms. Hopper removed most, but not all, references to “cure” in her promotional materials. You can take that for what it’s worth.

    My personal opinion, which I don’t think I’ve ever stated publicly before this, is that I think Annie Hopper’s claims about MCS being the resulting symptom of an Acquired Toxic Brain Injury involving the limbic system of the brain is basically what Iris Bell has been claiming since 1992. It may be correct but only a partial explanation and only for the brain-derived symptoms, not the peripheral sensitivities that also occur in most MCS patients. So while the technique may work for some, it most likely won’t work for all. But that very important caveat is rarely ever discussed in Ms. Hopper’s informational materials.

    But my main problem with Annie Hopper back in the fall of last year, was not that she wants to promote and sell her therapy– of course she is free to do that– but my issue with her was that she was claiming her therapy is a cure for MCS across the board and is charging a very big fee to share her secrets. I had an online chat with Ms. Hopper and found her to be very naive about the problems inherent in her claiming that her therapy was a cure. She was (and still is I imagine) basing her claim of cure on anecdotal evidence such as yours; there is no replicated scientific evidence that she has found the cure for MCS and I found it highly unethical for her to be making those claims with such conviction.

    I respectfully disagree with your analysis on the lack of research. In fact, there is a very large body of peer-reviewed research on many natural and integrative techniques, including herbs, supplements, acupuncture, diet, stress reduction, cognitive therapy, and much more. Not all research is corrupt, and people must use their own skills at analysis to see what is genuine and what is corrupt– just following the money will tell you a lot. But there most certainly is a lot of solid research out there on therapies found outside allopathic medicine– It may not be recognized by all allopathic physicians, but it’s there, including evidence on the physiological causes of MCS. No one can say in 2010 that there is NO scientific support for a physiological cause of MCS, because there is, although getting that peer-reviewed, published research recognized is the challenge facing MCS researchers today. When I asked Ms. Hopper whether she had studied this research, she indicated she had not. I find this lack of curiosity disturbing for someone claiming to have found the “cure” for MCS.

    While it may be completely true that your MCS was all in your head, initiated by a brain injured by toxic exposures, viruses, infections, physical trauma, or emotional trauma, that belief simply cannot be applied to absolutely everyone with MCS. The illness is far more complicated than that– as the research shows.

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  32. Mike

    10. Jun, 2010

    If he is able to cure one person via his programme or via the placebo effect, he is to be commended.

    Having a Medical Degree means nothing. Our “doctors” are keeping us alive but at what price?

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  33. Mark

    20. Jun, 2010

    If the world would get off the illusion that the almighty dollar is the great saviour of humanity and start doing the right thing namely start helping each other as equals then we wouldn’t need to worry about miracle cures because the incentive to invent them would not exist.

    Reply to this comment

  34. Christina

    23. Aug, 2010

    Not easy to find our way with mcs ; I have been suffering from mcs for more than 10 years and spent so much money yet ; I found your article as I was searching information about the Gupta programme ; really appreciate the warning ; I have no idea if their technique is helpful but am convinced that what they say may go in the right direction , as what is said about Any Hopper programme ; this illness brings so much stress in our life that we may be aggravating ourselves in a vicious cycle ; only brain exercices may slow down or stop the process as well as trying to find our feelings ; I never read on the web about the importance of expressing fears, anger, frustration and much more for people with mcs ; we have to cope with so much that all this builts up in our bodys ; we lock all these emotions and the immune system has to find much energy to prevent these feelings to come out ; I just bought books on ptsd and will try to do the exercices ; it may be a good way to retrain the brain .. ? ; I bought “the ptsd workbook” from Mary Beth williams and “the post traumatic stress disorder soucebook” from R Schiraldi , both of them have a big amount of positive comments on amazon.com; some eft scripts for mcs may be helpfull too, like “my body will process the chemicals safely, I am safe.. Is there any place on the web where people with mcs try to heal with these techniques ? it would be really worth have a try. Of course, I agree with all the advices on the importance of using other things like trying to make our home safe and taking supplements. Really appreciated the controversial comments too .

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