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!

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

“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.

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.

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!

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

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.

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.”

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/.

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

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

Thank you all for your sharing your thoughts on this.