The idea that the brain is plastic in the sense of changeable, adaptable, malleable is, I’ve come to believe, the single most important change to our understanding of the human brain in 400 years. Norman Doidge
Michael Moskowitz’s office is not a place you want to end up. If you’re in pain, though, he might just be the one you want to see.
The Bay Area Medical Associates in Sausalito, California is not a place you want to end up at. This pain clinic treats people with intractable pain – people who have tried everything they can think of without success. It’s the end of the line for most of the pain patients it treats. It is, as Michael Moskowitz, director of the clinic, told Norman Doidge, the place “where people come to die with their pain”.
Moskowitz’s story was the first one featured in Doidge’s captivating 2016 book “The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity.” Moskowitz knows of what he speaks when he’s talking about pain. In 1994, while waterskiing he flipped over and hit the water awkwardly with his head. Despite everything Moskowitz tried – morphine and other opioid drugs, physical therapy, traction, self-hypnosis, anti-inflammatory drugs etc. – the pain strengthened, and even worse, spread. Thirteen years later, not only was it present on both sides of his neck but it had spread to the middle of his back. In constant pain and out of options, Moskowitz turned to an unlikely idea – neuroplasticity.
Neuroplasticity
Neuroplasticity refers to the ability of the brain to alter the way it’s functioning. If a portion of your brain is damaged, for instance, other portions of your brain can take over the functions that have been lost. People who’ve had strokes can regain functioning by physically and mentally prodding the brain to create new connections. Over time, bit by bit, undamaged areas of the brain can learn, at least to some extent, to take over those functions.
Neuroplasticity’s core thesis is that neurons that wire together fire together. The more they fire together, the stronger the connection they produce and the more powerful they become. Think of a river carving out a channel. The more water that flows through that channel the slicker and deeper it becomes – and the harder it is for the river to breach its banks. On earth, rivers that become deeply entrenched can carve their way through rising mountains.
Neuroplasticity proposes that the sensations we experience, activities we engage in, the thoughts that we think, the feelings that we return to again and again – they’ve all carved out channels in our brain.
At the time Moskowitz began his experiments, however, the relationship of neuroplasticity to pain, however, was hardly known. Now we know that if we experience an injury or an illness that continuously saturates our brain with pain or other unpleasant sensations, those pathways will strengthen.
Pain that persists is terrifying because it sets off the amygdala, before the parts of the brain that modify our emotional responses can be turned on. The result is that we re-experience the trauma that caused the pain and this trauma is continuously reinforced by it. The terror demoralizes us. Moskowitz
By the same token, the “use it or lose it” rule also applies to the brain. If you stop appreciating things, finding ways to be joyful, etc. those pathways and your ability to experience those feelings will diminish.
The Chronicity of Pain
Chronic pain is a much more complex process than acute pain. In contrast to acute short-term pain, chronic pain includes an important “learned” component. Many studies have shown that the brain takes what it believes will happen in the future into account when it decides how much pain it should deliver.
If the brain believes that actions can be taken to relieve pain, our experience of pain will diminish, but if the brain believes that the pain will get worse, it will actually ramp up our pain levels substantially. (The same process presumably applies to activity and fatigue; if the brain anticipates that fatigue or pain will result, it will clamp down on our ability to be active.)
Believing that future injury is likely, the brain keeps whacking us with pain stimuli in order to compel us to find ways to heal the injury. Immobilization certainly works in acute pain – an injury, after all, needs time and rest to heal – but in chronic pain, it produces a physiological state that results in more – not less – pain. Similarly, the brain produces fatigue, pain and other flu-like symptoms during an infection to give us time to heal.
But what if the brain for one reason or another gets stuck in a pain-producing mode? Thirteen years later, after taking all the medications and therapies medicine could provide, Moskowitz, a pain specialist, not only remained in pain but his pain had spread from one side of his neck to the other side and down his back. He was getting worse, not better.
Competitive Plasticity to the Rescue
“I don’t believe in pain management anymore. I believe in trying to cure chronic pain.” Moskowitz, in “The Brain’s Way of Healing”
The key factor, Moskowitz found, however, had to do with the “use it or lose it” phenomenon and a process called “competitive plasticity”. Competitive plasticity recognizes that the same areas of the brain can engage in many different functions.
Nowhere in the brain is this better demonstrated than with pain. Pain is such a fundamental and important sensation that the areas of the brain that process pain signals overlap with other areas of the brain which govern movement, emotions, vision, thoughts, etc. Because six of the nine parts of the brain involved with pain are also involved with mood, it’s easy to see why pain is so often associated with depression and vice-versa.
It’s not surprising, then, that strong pain – and/or presumably, fatigue – signals can interfere with very basic processes as the brain devotes more and more attention and energy to assessing, thinking about, worrying about, etc. pain/fatigue.
As pain-processing areas expand in the brain, we lose our full ability to problem-solve, regulate emotions, resolve conflicts, relate to others, distinguish other sensations from pain, effectively plan… Every time the pain worsens it feels like it is here to stay…The amygdala is not a place of moderation. It is a place of extreme emotions, fight-and-flight and post-traumatic stress disorder. Moskowitz
Moskowitz’s key insight was to try and devise ways to wrench back the brain to normal functioning – to change its “learned behavior” and stop its focus on pain.
The process he devised was both counterintuitive and multidimensional. Recognizing the brain’s push to immobilize him and prevent further injury had only strengthened his pain pathways, he reasoned that overriding his brain’s signals to rest, to lie down, etc. could help, but that was only the start of the process.
Realizing that he needed a counter-stimulating force, Moskowitz developed a way to force his brain to process something other than pain. Because our brains devote so much brainpower to processing visual stimuli, Moskowitz focused on using visual stimuli to steal back regions of his brain that had been captured by pain.
His first patient was himself. Moskowitz drew a map of what a brain in chronic pain looked like: a map indicating that large parts of his brain had been hijacked by pain. Each time he experienced pain, he pictured his brain as it was – and then he imagined his pain map shrinking.
Relentless Battle
Moskowitz’s recognition that he had no easy task before him provided another key insight. He’d, after all, been in pain for a long time. His brain had had 13 years to learn how to process and deliver pain signals as efficiently and as devastatingly as possible.
Moskowitz literally rewired his brain to turn off a raging, out-of-control pain response.
He was engaged in a relentless battle to reconstruct how his brain was functioning – so he practiced assiduously – and recognized it would take time to “unlearn” that process. Every time he experienced pain, he fought back with the visual signal of the pain map in his brain shrinking.
Moskowitz’s dedication made the difference. It took him three weeks of practice to notice a “very small” decrease in his pain levels. After a month, his pain reduction visualization process had become so automatic that he never let a pain spike go by without attacking it.
By six weeks, the referred pain that had crept from his original injury in his neck to the middle of his back had disappeared. Four months later, pain in his neck began to shut down. Within a year, the neck pain that had bothered him for 13 years was totally gone. Moskowitz had effectively rewired his brain so that he no longer felt pain that area.
The Gist
After an accident, Dr. Michael Moskowitz, a pain doctor, tried and failed to treat his pain – which widened and grew worse and worse over time.
As is common in a state of chronic pain, Moskowitz’s brain, over time, devoted more and more of its resources to assessing and paying attention to his pain. This process not only increases pain levels but, by taking resources away from other areas of the brain, it can impact one’s mood, ability, cognition, movement, etc.
Applying neuroplasticity findings to pain, Moskowitz created a visual based approach designed to tone down his brain’s response to pain.
He used the process of “competitive plasticity” to consciously tell the pain-producing parts of the brain to disengage.
His approach required a relentless and disciplined approach but eventually he was able to rewire his brain and completely turn off what had been a raging and out-of-control pain response. After 13 years, he became completely pain-free.
Moskowitz used the same approach with a nurse – with a back injury so severe surgeons were unwilling to operate on her. Despite being in severe pain for over a decade, and despite still having a serious back injury, the nurse was able to turn off her pain response as well and now leads a normal life.
Moskowitz’s is just one of many approaches which are using the innate neuroplasticity of the brain to treat disease.
She was declared disabled. In constant pain no matter how many painkillers she took, she became depressed and suicidal. Ten years after her accident, she was taking huge doses of morphine and spent entire days in her Jacuzzi. The slightest movement could trigger unbearable amounts of pain.
It was all she could do to make it to Moskowitz’s office. He’d been treating her for five years without much success when he developed his pain visualization process.
Moskowitz introduced Jan to his new approach by having her first read Norman Doidge’s first book, “The Brain That Changes Itself”. Then he had her visualize her pain brain maps shrinking. She also visualized the pain signals coming up from her lower back into her brain, and then having the brain not react.
Moskowitz told her to look at the brain maps seven times a day, but Jan, locked into her massage chair at home, looked at them constantly. By the third week, she was beginning to have a couple of minutes a day without pain. By the fourth week, she was pain free for as long as half an hour – the first time that it happened in over 10 years.
By the time Doidge talked to her a year and a half later, this woman, with intractable spinal injuries so severe that surgery was not an option, was completely out of pain. She told him that she felt that she had been asleep for a decade, and now all she wanted to do was to stay up for 24 hours a day and catch up.
Neuroplasticity
Doidge found the process Moskowitz was applying no different than those he had seen working in the victims of stroke, physical trauma or other conditions. The gains are tentative at first, but if the practice is aggressively applied they build over time. Doidge even compares learning to reprogram the brain to learning a musical instrument – or more aptly, perhaps, learning a new language. The practice is most difficult at first but gets easier over time.
Moskowitz’s patients’ pattern of change is also consistent with what we see when the brain learns a new skill, like playing a musical instrument or learning a language. The time frame is typical of what I have seen in significant neuroplastic change: the change occurred over weeks (often six to eight weeks) and required daily mental practice. It’s hard work. Doidge
Eventually, though, Moskowitz’s technique changed the programming of Jan’s brain’s so completely that it learned to disregard the pain signals emanating from her injured back without her thinking about it.
(Moskowitz) thinks that once they have learned and practiced the technique over hundreds of hours their unconscious mind takes over the task of blocking pain by using competitive plasticity” Doidge
This is where the lines we like to draw between the brain, the mind and the body become blurred. Moskowitz’s and Jan’s brains, though no fault of their own, had become broken. For whatever reason, the normal response to injury – which should result in the pain signaling lessening – failed to kick in. Instead, no matter what treatments either tried – and both had access to all of them – their pain levels increased and increased.
Note that Jan was an RN and Moskowitz was a highly trained professional working in the pain field. After trying everything under the sun, what finally worked for them was a visualization practice aimed at the brain – a process that most of us would probably scoff at. Yet that process was powerful to enable a woman whose back was too damaged for a surgeon to operate on her to live without pain.
It was all done through “behavioral therapy” – a conscious manipulation of the brain to change an unconscious brain programming. We program the brain all the time. Learning how to drive a car requires a conscious effort which ends up being an automatic, learned behavior. Why not use the same process to program the brain to respond to internal stimuli – pain signals – differently?
“It is a fact that brain and body reliably turn conscious effort into unconscious effort to unconscious action that allows us to move from learning to mastery, returning the disease of persistent pain to the fleeting symptom of acute pain.” Doidge
It should be noted that not everyone has had such a dramatic response. Moskowitz believes that the willingness to engage in the practice – to again, again and again visually beat back down those pain sensations – has something to do with that. He’s working with Dr. Maria Golden to beat them down in another way, though, by using pleasurable sensations to grab the brain’s attention and wrench it out of its pain pathways.
You can find Dr. Moskowitz and his colleague, Dr. Marla Golden, at www.neuroplastix.com which, among other things, includes therapeutic brain animations which can be used to turn down pain levels, the doctors talking about their treatment approaches, and “The Neuroplastic Transformation Workbook” for those who want to try their techniques.
Moskowitz’s program is just one instance of many that have been developed to use neuroplasticity to reduce pain and other symptoms.
Annie Hopper’s Dynamic Neural Retraining System
Annie Hopper, for instance, is using neuroplasticity in a different way in her Dynamic Neural Retraining System (DNRS) program to attempt to heal what she believes is a broken brain in MCS, FM and ME/CFS. She pins the blame on damaged sensory processing which results in inflammation, fatigue, pain, etc. and attempts to rewire the limbic system and reduce an over-active stress response using different methods from Moskowitz’s.
I started the six-month program this week. Five months with an unrelenting “cold” which has not responded to antivirals, supplements, etc. gave me an extra incentive to try something new. Hopper, like Moskowitz, emphasizes the need for repetition and practice, practice, practice.
- Coming up – a DNRS ME/CFS success story from a medical professional. This person is not over ME/CFS, but over time, she has seen substantial improvement
Does Moskowitz think his method will also work for CFS?
Doidge reported that Moskowitz has used this technique in a wide variety of pain conditions (altho FM was not mentioned). That suggests to me that it’s a generic technique that might work for the pain in any disease in which the pain processing centers of the brain have become overactive. Both fibromyalgia – and for many people – ME/CFS fit that category.
I had 6 very long and serious spine surgeries since I was 13 years old. By the age of 38, the pain from the previous surgeries had me completely home bound with 5 little children. A specialist in a large city 7 hours from me operated again to attempt to give me some relief. Not only did this surgery (which re-fused me again from my neck all the way to my tailbone and took out all former instrumentation and replaced) make the pain worse, but I developed M.E. and fibromyalgia within weeks of the surgery. I was too fatigued to help myself, and in too much constant pain to try. After 3 years of home P.T., and other types of therapies, I was placed on OxyContin. It actually helped with the spine/hip pain, however the Fibro pain was still present. 16 months ago my Pain Clinic reduced my dosage to 1/3 of the mg I had been on for 18 years. Between the back pain, Fibro pain, and fatigue that has had me bedridden for the last 8 years…I have begged my family to help me permanently end this nightmare.
It’s extremely difficult for patients who are suffering with multiple and separate chronic illnesses to even get a doctor to listen-let alone help.
But I suppose there is nothing anyone can do about any of these terrible illnesses. Right? So why are doctors so worried about patients like me taking pain meds? If I wanted to take my life-I could figure out another way.
Has giving me back this relentless pain stopped the Opioid epidemic. I sure hope so. I may not stick around long enough to rejoice that our country has eliminated drug all drug users.
Katherine, I hear your pain and can empathize with you! I have been trying to find an alternative to a very small amount of daily Tramadol. 25 to 50 mg. Depending on the day. Because of the raised eyebrows and doctors reluctantly giving me a script for fear of them getting in trouble. The amount I take helps my hyper autonomic nervous system response and helps with POTS. It doesn’t help pain much at all at that low dose. But it will take a slight edge off. So far, I haven’t found a real good supplement. Though I am now trialing California Poppy and Wild Lettuce. Both seem to help. If I can get out of pain enough to sleep, I feel much better the next day.
You can’t undo a surgery and once the nerves start over firing it’s hard to stop. I found with injured nerves it has taken a long while for it to settle out. Most my surgeries I’ve notice 2 years and then it’s not constantly on my mind. Yet, it’s still there.
It is tiring to have chronic issues and then put chronic pain on top. I hope for you peace and ability to keep coping. Science is advancing so much and knowledge is increasing – hoping for better solutions, “purple bandaids” for us all.
So interesting. In addition to having ME and pain, I’ve battled depression since college. Recently, my antidepressant cocktail suddenly stopped working-again and I decided to try TMS (it’s a big time commitment but is covered by most insurance companies). I’m so curious now if the plasticity theory is aligned with TMS in that there is a reprogramming of the pathways in the brain. So far, I believe TMS has helped.
Glad TMS has helped you. I’m 45, and have had severe depression for 25+, endometriosis 35, fibromyalgia 30, migraines 38, and to the point after domestic violence I got PTSD & anxiety, I was attacked by a mentally ill client I developed CRPS, and made everything else worse. Since nothing has helped they tried TMS, unfortunately it backfired triggered migraine every time & physically hurt too much. No relief, just had to stop. Ive tried every procedure except spinal cord implant bc I’m scared since everything backfired. I nor have PNS trial (goes in back but not in cord) & a new treatment for medication resistant depression. This opioid war has hurt chronic pain patients who were the least likely addicted less than 1%, and not reduced use or overdoses, naltrexone reduced deaths. I’ve tried every psychological & physiological treatment to address pain, depression, anxiety & ptsd but not much has helped at all. I take classes for distraction & to not lose more cognitive skills so Id love if retrain brain helped, just haven’t benefited from any treatments yet. I’m really happy when I hear others benefited from treatments Zi had high hopes about like TMS.
Fibromyalgia is one of the best conditions to treat with the Neuroplastic Transformation approach. Dr Golden and I have seen almost all pain, mood and anxiety disorders respond well to this approach, if the patient is as relentless as their pain or mood disturbance. Dr. Golden has also found this approach to be very helpful for chemical dependency treatment, while I have done a great deal of work with medical cannabis and neuroplasticity.
Thanks filling in that missing piece….Doidge described a large number of conditions which your protocols had helped in but not fibromyalgia! Now we know it responds well – good news indeed.
We just featured your book by the way in our last two Cannabis blogs :). You were actually the Doctor in “The Doctor Speaks” – you’ve really been getting around! :0
https://www.healthrising.org/blog/2019/08/21/marijuana-as-medicine-for-me-cfs-and-fm-iv-the-doctor-speaks-treatment-pt-i/
Not to say that this isn’t a workable treatment for chronic pain, as I am familiar with pain gate theory and had tried similar exercises for reprogramming my brain’s responses to pain. I wish you well, Cort and think the brain is one of the most powerful ‘treatments’ of all. For myself, this didn’t work so well and so I wondered why…
The best idea I could come up with is that my pain, mostly from Ehlers-Danlos joint dislocations and subluxations, was probably repeated acute pain from continuous injury. I’m not sure where the line is between a broken pain feedback system and actual repeated injury–since some conditions (like osteoarthritis for instance–which I also have) get worse with overuse–although moderate use is usually associated with pain improvement.
Hope you do well, Cort. If you have any other ideas about what constitutes chronic vs. continuous acute, I’d love to hear them!
Thanks! I am going to give the program my best. I will definitely be looking more into this fascinating field and how the transition from acute to chronic pain happens.
The most incredible thing for me about the Moskowitz story was Jan’s ability to stop her brain from receiving and acting on the pain signal emanating from her ravaged back. Her back is unchanged, it’s structurally messed up, yet she is no longer in pain. She has learned to stop her brain from acting on those pain signals.
She’s not a genetic freak who just doesn’t feel pain. Far from it. Prior to trying Moskowitz’s treatment approach Jan was basically living in her Jacuzzi/ massage chair – and still gulping down pain pills. Now she’s completely out of pain…It’s pretty mind-blowing…
The book “Cure – A journey into the science of mind over body” is a good overview of the placebo effect, visualization, and other mind-body treatments in “curing” things like pain in patients with severe back problems and numerous other conditions.
So did you just buy the $48 book, or are you traveling to their clinic and paying for treatment???
You have done an excellent job explains my approach. One thing to clarify Jan’s experience. She still feels pain, just as I do, but it is persistent pain that is gone for both of us. Our chronic pain is gone, but acute pain is unaltered. For that I recommend Medical cannabis and neuroplasticity. I’ve written a book about that, as well, Medical Cannabis: A Guide for Patient’s, Practitioners and Caregivers.
That’s interesting, Nancy B. I’ve been hypothesizing for years now that Fibromyalgia (in most people diagnosed with it) does involve body-wide injury-type malformations in muscle fascia. I don’t believe that an over-active CNS is exaggerating the pain, rather that it is so overwhelmed with the real pain existing everywhere, that it already tends to only focus on the worst spots. In my experience, I always had one “worst spot” that monopolized my attention, and a couple more spots that I was constantly aware of. But the slightest pressure or probing (eg by a therapist, or by myself) of spots that weren’t commanding attention already, felt like they were a raw wound being probed and the pain level was immediately high enough to break through the prioritization regime. And this applies to most of the body. I don’t believe the CNS is exaggerating the pain from the spot being probed at any one time; I believe that spot has something in the muscle fascia area approximating to a wound. Fascia all over the body is like this; I believe it is under some kind of constant strain and pressure from malformation, and is toxic, probably from toxins being trapped in adhesions and malformations.
In normal healthy bodies, I hypothesize, the fascia is being hydrated and flushed out (probably by movement). If there is something I would love to see incorporated into meta-studies, it is whether there is an absence of FM cases among people who did certain “high mobility” activities regularly, such as Yoga or dancing. I did a lot of road cycling and got FM; and recently I read in a Robert Schleip paper that riding a road racing bicycle is one activity that is not good for fascia mobilization.
As I have finally succeeded in rehabilitating myself, I have progressively adopted (as I become able) more and more “mobilizer” activities such as Yoga, trampolining, and table tennis. I am determined to make myself as “FM-proof” as possible for the rest of my life. And as I have got better, I have become more conscious, not less, of low-level pain all over. I have got rid of the worst, flared-up symptoms at particular locations that always used to predominate. Everything I have been doing has been targeted at hydrating, detoxing, and mobilizing the fascia body-wide. I’ve written elsewhere about the many things I do.
I recently watched an extremely interesting presentation by Todd Hargrove in which he pointed out that numerous people who have been included in studies as healthy controls, pain-free, turn out to have injuries that show up in scans, identical to the people who are in pain. One of Hargrove’s suggestions is that the pain is actually coming from something we don’t understand well enough yet – and most of the nerves are actually in muscle fascia. It could be that treatment and rehabilitation of the fascia is where the solution lies. Scanning of the fascia is a science that is in its infancy, but there are findings that confirm that this may be where the difference is between people in pain, and the healthy controls with the “same injuries”.
On the subject of EDS, which I believe is an “opposite problem” to what I and others with FM have, Dr Pradeep Chopra has recently had a very fruitful sharing of insights with gurus of The Feldenkrais Method. I think one of the best things anyone with EDS can do, is find a good Feldenkrais practitioner. I believe that the connective-tissue problem in EDS is exactly the opposite problem to FM; your connective tissue is too weak and stretchy; mine was too stiff and stuck. Ligaments and tendons are the “same stuff” as fascia; they blend in to the fascia envelopes. In FM, the fascia has become “more tendon-like” and in EDS, the tendons have become “more fascia-like”. They are just the opposite end of the same spectrum of potential dysfunctions in connective tissue / fascia.
My having EDS and also easy to dislocate things. We have to tense up our muscles and we do it constantly to keep ourselves pulled together and upright. We get muscle fatigue from doing that. I get some pretty severe spasms too. Lots of us find bracing helpful. I find a neoprene abdominal binder when I travel to make life much happier. I can relax my back muscles from trying to stabilize me from movement. Then things don’t pull out in my back as bad.
I have severe problems with spurs and calcification of all vertebrae in my back and neck. I have bulging disk and also a couple places with spinal cord compression. I feel this build up is to try to stabilize my back. Others might would see it as a horrible problem, but if it weren’t there, I’d be even less stable having to rely on faulty Collagen muscles to hold me together and probably in even worse pain. I have some problems with managing my pain. But considering…..I think I do pretty well. However, I do find a mild muscle relaxer (Bentyl) and 1/2 to 1 Tramadol (50mg) at night necessary. But I cycle on and off those to keep a low dose working. It also stabilizes my autonomic nervous system sympathetic response. Best things I’ve used for POTS.
Issie
Where Else have you written about the protocol you have successfully used to break up this facia. I would be very interested
I have been dx with both. You’re sorely mistaken that people with Eds don’t get stuff or stuck.
I feel as if the fascia in my forearms are very tight and stained. They seem to be pulling the muscles in such a way as to cause them to contact.
You’ve written more about this. I will look into it. Thanks
Have you purchased and practiced and integrated the processes in “The Brain’s Way of Healing” by Doidge and “Neuroplastic Transformation Workbook” by Moskowitz?
Please order these books and read them and actually DO the processes they recommend as if your life depends on it.. Actually–your life does depend on it. The best is yet to come.
Please invest the time and energy to “do the steps they recommend” to make it possible for you to have what you need and want and dream of.
This is interesting, and visualization can certainly be a powerful method for some things. I can see (sorry) it applying to pain better than to a cold, although if you find the right image(s), and have the confidence in it, it well could.
It is hard for me to see how it could apply to ME/CFS because of the broad spectrum of symptoms and disorders within the disease. Possibly taking on one major symptom at a time.
Good luck with the cold, Cort. You’ve had it so long, though, can’t help but wonder if it isn’t something else going on.
Thanks. I’ve felt I was over the “cold” several times only to have it come back.
The pain centers of the brain are a lot better worked out than the fatigue and flu-like symptom centers I think. Hopper’s practice does not rely on visualization though – it’s focused on reducing what she believes is an over-active stress response – which from the beginning has clearly been wildly over-active in me. It must be using up a ton of energy.
I’m don’t know how much the stress response is involved in ME/CFS/FM – I know it’s involved – but is it it? I don’t know but I would love to get the stress response under control and that energy going to other things.
I think of this as one of many approaches that could be helpful.
I took Annie’s DNRS program in a live workshop setting a few yr’s ago; it was worthwhile for sure
It largely wasn’t about nor would I approach it as a ‘do the re-wiring work to address specific symptoms’ kind of thing. But re-wire to really see ourselves functioning at the level we were b4 getting ill or at a much higher level than we are currently. To continually take our focus away fm whatever is going on in the moment that is (very) unenjoyable
That’s a simplistic explanation 4 something that takes a long time & continued commitment no matter how progress is going … I fell out of the regular practice needed & have been thinking lately I need to get back to it!
So this post is serendipitous 4 me. Thx Cort! And, Cameron, I encourage u 2 not worry about specific symptoms and definitely look at giving it a go 🙂
Liz, your comment is very interesting. Thanks for it.
One has to remember that as per the CPET tests people with ME/CFS have abnormal physiology and exercise intolerance. The key appears to be to keep physical activity gentle enough so bad not to go over the anaerobic threshold and to rest/relax enough to keep the HR low. Introducing low level anaerobic exercise as able. At the same time the emotional/cognitive over exertion can be kept low with mindfulness techniques such as this one. The idea that you can “cure’ ME/CFS or every better manage it with just CBT appears flawed. The PACE trial actual results showed CBT alone to be ineffective.
I think the idea of mental “pacing” is a really good one. My god, with my mind buzzing around so much, it must be burning up a ton of energy. The brain, after all, is the most energy intensive organ in the body.
Hi Cort
I came across Moskowitz a few years back and it helped so much with my intense fears at the time – it really resonated with me, especially the amygdala stuff inducing a constant state of trauma. You’ve reminded me to revisit it again, as after initial gains, I, probably like others, forgot about it a while (which is probably a positive in itself, as I was going about my life more). Another absolutely fantastic set of guys to look out for regarding pain, neuroplastity and the mind/body/social connection is Lorimar Moseley and David Butler and their Explain Pain book and other info (check out lorimars YouTube videos – hes such an engaging guy). This stuff has been invaluable to me with my pain and m.e. Its definitely worth a look for anyone suffering fibro/Cfs pain and fatigue.
I used some of Dr Maskowitz’s program many years ago and found them helpful for chronic pain associated with FM. Thanks for reminding me about his work. Anyone who wants to know more about Dr Maskowitz’s program may do so at his website http://www.neuroplastix.com/
Glad to hear from someone with FM. Thanks for sharing that and good luck. 🙂
Looking forward to the DNRS post, Cort. Recently my daughter used the program for her MdDS, a rocking/swaying disorder. After two months of steady practice, her MdDS was largely unchanged, but unexpectedly most of her food sensitivities had disappeared.
Btw if anyone is looking for motivation in the mind-over-matter department, go to the DNRS site and listen to the testimonials. Clearly these people are not shills. Several have had years of debilitating fatigue, but you feel perhaps their fatigue is bundled with other, autonomic nervous system problems, all paired with various food and chemical sensitivities, and thus may not be related to more ‘classic’ ME/CFS.
Once the summer calms down, like Cort, I too am going ‘all in’ on the DNRS program. As I’ve mentioned before, I massively over-exercised four straight days back in 2015, and suddenly, after 32 years of mild/moderate ME, found myself permanently stuck in a new moderate/severe category. I am hoping to engage my limbic system in the fashion of Gupta’s or Dan Neuffer’s programs and push myself up a level…or three. Any progress I will report back on.
The testimonials are incredible – as is Annie’s story herself – successful career woman – a wellness counselor – she was in excellent emotional and mental shape and yet an exposure to to a bad building she moved to set an incredible stream of events in motion.
She ended up living in her car for a time and could go into convulsions when exposed to chemicals. At one point her sensitivities simply exploded overnight – she woke up a changed person – hypersensitive to electrical currents and all manner of things. Her brain had abruptly changed.
Yet she is now completely normal, is able to travel around the world and has no need to avoid chemicals at all. There are numerous stories like that.
The big question for me is how well this program might work for ME/CFS. I know it can work very well for MCS…I would be very happy, though, to be able to get my stress response of the hair trigger its been on for decades and see what happens. I think every boost we give our system gives other things the opportunity to work. Time will tell.
Hi Peter, I’ve never read of anyone with such an identical illness pattern to my own. I was diagnosed with ME in the UK 27 years ago, age 24. Very ill for 5 years, but gradually “recovered” enough to think it was gone, but looking back now it had simply become “mild to moderate” as you describe. Well enough to exercise, but I crashed easily and often without realizing it.
Then in December 2013 I was doing a stupid “run every day” challenge, some Facebook running group I was part of at the time where you had to run every day no matter what and share a photo each day. I got sick with a fever of 99 but ran through it for about 4 days. That was the beginning of severe ME/CFS, MCS, MCAS, POTS, and this year I added Fibro to the list.
I’ve been doing the ANS Rewire program for 3 months, and have gone from needing a wheelchair to support myself walking around the house, to doing my own grocery shopping and daily gentle yoga. All the Fibro pain has gone. The fatigue is going to take a lot longer I can tell, but I’m as relentless in my daily practices as the illness has been, so I think I’ll beat it in time.
Cort, wonderful information. It reminds me of what I’ve been doing for my fibro, lupus, degenerative osteoarthritis, etc. pain. I’ve been pairing the pain sensation with a rapid move into mindfulness. My awareness of the pain sensation leads into a state of observing any words or images attached to the sensation which can worsen the pain. When I was a newbie fibromite, I noticed the negative thought when pain would intensify: “I can’t stand this!”. The amygdala’s response is as to a dangerous threat and the sympathetic nervous system is activated. Stress! I think it’s the Acceptance that is the big factor. When I am able to have an accepting attitude toward pain and can even greet it and invite it to stay, inevitably it decreases significantly or goes away.
From the beginning I have noticed how physically susceptible I was to small stressors – things which would never would have bothered me before – which had an impact. It wasn’t a huge problem – it was just always present.
This greatly increased with my recent cold. I could see the flu-like symptoms magnify greatly when depressing thoughts would flit by. – which would prompt more negative thoughts – more symptoms. Never had I seen that so clearly or dramatically. That was a real wake-up call.
The acceptance issue certainly Hopper’s paradigm and there is another crucial part – a really crucial part to her program – which I don’t feel I should mention other than to say that’s it’s an important to return the system to its former healthy functioning.
I have been reading all these comments, so have yet not followed up on what they contain. In response to your last comment, though, Cort, I’d like to mention that since I started TM almost 2 years ago, my stress response is almost close to gone, whether to pain or to emotional “assaults.” It has cultivated in me a more observational stance to both. I think it is worth adding to what this new approach adds. Indeed, TM is a kind of brain rewiring. Probably, it depends on what the individual person finds most comfortable to try. Re TM, by the way, it took me many years and many teachers from non TM backgrounds to allow me to understand how the practice could work for me. (Continuing thanks to all of them).
Cameron, I did TM about 20 years ago and was recently disappointed to learn that the mantra which I thought was unique to each person was not, e.g. the same mantra would be given to women of a certain age, etc. However, I did find TM helpful at the time.
I think that those of us suffering with ME/Fibro/EDS and similar type illnesses are constantly tuned in to how our bodies feel which can both be a positive and a negative.
It means any sensation can be amplified which isn’t going to be very helpful and can lead to negative feelings to “protect” ourselves. This can end up with us doing less and less which is of course very damaging.
As well as having ME for many years I also suffer with chronic migraines, sciatica and osteoarthritis so I am very aware of pain within my body but I am also aware that it isn’t helpful for me to dwell on what is going on.
I guess it does depend on how bad the pain is because if it is a very severe migraine then I do have to give in for at least part of the day but on other days even if I am not feeling great I will give activity a try and see how I get on. A short walk in the park with my dog gives me a lift even if pain is present.
For example I have recently started a yoga class for 75 minutes a week. It’s difficult for me to manage but at least it starts off with a lot of relaxation and floor work gradually building up to standing exercises. I am the only one who cannot do all the exercises but just accept this and I am very pleased with what I can do and it always gives me a psychological boost when I am going home. Last week was the first time I had done a yoga or pilates class for over 9 months and I was exhausted the next day until 4 pm but then some energy came through and I was able to go for a short walk.
Today I actually had a mild migraine because of an extremely stressful day yesterday with stuff that was outside of my control but I still went along to the class and surprised myself with what I could do, however the migraine pain came back during the class more strongly and I needed my strong migraine painkillers when home.
All in all it only left me with negative feelings during the afternoon when I really did feel bad but I have no regrets that I did give it a go and hope that I will continue trying to get my body to ignore too frequent pain signals.
Hi Pam
Similar things have happened to me. It’s easy to get excited, see progress and then push too hard. I think it’s just part of the process. I think slow and steady does it and good luck with your practice!
I know this article is old but this comment is so applicable now. I have restarted my mind body symptom (dizziness, light headed ness) work and many programs are now talking about acceptance.
Cort, one of the hallmark symptoms of my immune dysfunction is its inability to recognize antigens or possibly to build sufficient antibodies against common viruses. Consequently, for years, whenever I catch a cold or the flu or a stomach bug, I have it usually three times. The first time is the worst, the second is less intense, and the final time is mild. I usually have a few days to a week between episodes. So if I catch a cold, it’s likely to cause me grief for a month to six weeks. I’ve become practically a Hughsian germaphobe because of this. I do hope you will soon be on the other side of your cold.
Me too! I got a cold – and it wasn’t so bad – and then did some physical work and felt fine! And two days later – which is when my PEM usually hits – just got hammered by it. It settled in deep.
I have had times where it’s disappeared and hopefully it will again. I’m quite optimistic 🙂
Thanks for posting this, Cort.
I just reached the six-month mark on the DNRS DVD program. I bought the DVD’s to help me with severe photophobia.
I am now able to watch the television at normal intensity for 12 minutes at a time without getting a migraine. For me, that’s huge, an increase from zero minutes before DNRS.
I can now subject myself to solid air fresheners for 13 minutes at a time without a migraine. Yaay!
I’ve even been able to go grocery shopping, including the detergent aisle, without getting a migraine. Yaaay again.
I still have plenty of opportunities for improvement, but I’m greatly encouraged by my small progress. I plan to keep practicing until my sensitivities completely subside.
It hasn’t been easy — my symptoms got worse before they got better. I’ve read Doidge’s book and it makes sense. The DVD’s are around $300 and she (Hopper) has a money back guarantee. So, there’s nothing to lose.
Oh, I forgot to say — my mood has Greatly improved! And my horrible anxiety is almost gone. I did not buy the DVD’s with those in mind at all.
There’s another guy, Gupta, who sells a program for calming the amygdala. I’ve heard good things about that program too.
Congratulations. One thing I look forward to is this background anxiety disappearing. That’s one thing I’m sure is clearly possible. That mood switch alone would be worth it – boy would that be worth it! Hope you continue to see progress.
hi cort,
may I ask why you choose this and not dan neuffer or gupta? dan neuffer cured hid me/cfs totally. as dit gupta. both with more testimonys on really me/cfs.
would this work for me/cfs as a whole or just the stress response?
I am for years 98%-99% bedbound. severelly ill. what could it offer me?
thanks, wish you good luck!
I did try Gupta and it didn’t have much impact. Interestingly Hopper is quite similar to Gupta in some ways and it is having more of an impact this time. I don’t know if I’ve changed or her approach is a bit different but it’s definitely having more of an impact.
Just haven’t gotten to ANS Rewire which I hear good things about it.
Well, since the stress response is actually intimately tied to immune functioning, metabolism, pain, even muscle activation getting it to calm down could conceivably impact many areas. Time will tell for me 🙂
This is certainly something you can do from bed. There is an exercise which incorporates standing and movement but there’s no reason you couldn’t visualize it.
PS (re cold) I really highly recommend zinc! and aerosol salt/bicarb of soda nasal spray (aerosol makes it possible to be without preservatives; diluting salt with bicarbanate of soda makes it much softer on the tissues – there are a couple of makers: Himalayan Salts makes one, Neil Med makes one; helps me both to heal and preventively).
I know people get tired of the advice I give when asked…..try to find at least an hour of joy every day.
And don’t let CFS/FMS “be” your life…..it is a part of your life. You have to redefine yourself and have a new focus. Who will you be when/if your life changes? Alot is changing perception and definition. I try to not let my illness define me or stop me from my goals and desires. (TRY is word here, cause sometimes I’m stopped in my tracks.)
I find it better for me to not focus on it all the time or read about it or research it. Therefore you don’t see me on forums much any more. If you do, I’m probably in a flare again. I find I do better without it being constantly on my mind. (Yet when in a bad flare, its hard to not acknowledge it.)
Hope this helps you Cort. Did the MCAS things help?
I have had intractable pain for 7 years. I have no problem trying out Moskowitz neuroplastix videos and ideas. I have had physical therapy, injections, massage, whirlpool, tens, lidocaine, heating pads, etc. the list goes on.. to no avail…
Also I have done the DNRS program and while it helped me with anxiety it was no cure. I have also done ANS Rewire.. almost finished…. I like it better for a couple of reasons, one being that Dan’s work has no paid affiliates. And he comes across more human, flexible and likeable. Also his approach is more multi factorial than DNRS. The downside is that you have to set up your own daily schedule and program while with Hoppers it’s pretty much set out for you.. Although it can be a good idea to tailor your own… In my opinion DNRS can possibly be harmful as you are not allowed to talk about symptoms at all and encouraged to tell your symptoms (it’s) to STOP. What if someone really needed the Dr. but was following DNRS to a tee and ended up in a bad way? It’s kind of cultish in my opinion. Not to mention that in the DNRS handbook it advises to stay away from MSG .. but when I told someone in the group about MSG who was wondering why they got a headache whenever they went out to eat.. I was reprimanded by the DNRS administrators and told I was triggering that person to be afraid of food and my comment was deleted…
I could go on but needless to say I wasn’t over all impressed. Unfortunately I was hoping for a cure, or remission and was let down.
I also like fatigueanswers.com
free videos I find them helpful and calming. It’s a knock off the lightening process I believe, but seems to contain more advice.. I have not purchased that as of yet.
I want to add that I have tried, benzos, all kinds of supplements, muscle relaxers, anti depressants, midodrine, H1 and H2 blockers, inhalers, beta blockers, Toradol, and all kinds of diet changes, juicing, meditation, certain strains of probiotics, prebiotics, etc the list goes on and on! Yet I have been in chronic pain for 7 years and with pots and cfs for 3 years. I have crashes where I am bed bound with tachycardia and breathing problems with swollen tonsils, glands, migraines, tinnitus, muscle spasms, and brain fog.. then I have periods of time where I have little to no tachycardia or migraine and breathing is some what easier etc etc and I can cook, take a shower, do house hold chores, go grocery shopping, sit in the sun for awhile and walk the dogs. No where near well, but not bedbound. rinse and repeat! anyhow I got off on a Tangent! But I really wish Noone had to suffer chronic conditions at all.
You”ve worked really hard and I applaud your willingness to try so many different things. Good luck with your continuing search!
This is very encouraging and interesting.
From my naive perspective it almost seems like magic (not in the sense of ‘abracadabra’ and everything is fixed) – maybe alchemy is the better term. Taking a set of constants and changing it into some thing else. I just find the concept to be quite exciting.
I also like that it’s takes a lot of practice – too often we look for an easy fix, when true change takes time and effort. I’ve been able, for some years now, to use a process of: a) progressive muscle relaxation technique b) microsmic orbit technique (qi-gong visualisation exercise) and finally c) embrace anxious sensations (usually in the stomach or solar plexus) and focus on allowing them to expand (yuck but necessary) before they dissipate almost entirely and warmth and relaxation takes their place.
So based on this article, I thinks it’s time for me to up the ante and put more time in on a daily basis and try to deal with anxiety as it comes up, rather than waiting until it builds up to a certain density and wait until bedtime to apply my technique. Hopefully I can rewire it until it becomes subconscious. Can’t wait to find out!
I like the fact too that these practices are not advertised as being easy or usually quick because I would be shocked (happily shocked for sure) if anything that worked was.
My son and I have done the DNR dvd course with no success. We both have severe CFS. Watching the videos was a real big effort for both. It took us a long time to finish them. Some things were questionable for us from the beginning, but we still took a leap of faith and were consistent for all the required months.
One of them was the testimonials of a few people talking about great improvements from the first day attending the course. I really doubt you can rewire your brain in a few hours.
Another one was the fact that if you want the course to work, you can’t question it. I think good treatments work, wether you question them or not.
Last idea is, we found it was more oriented to chemical sensitivities, but not as easily applicable to CFS.
Check out miguel bautista and dan buglio
“If the brain believes that actions can be taken to relieve pain, our experience of pain will diminish, but if the brain believes that the pain will get worse, it will actually ramp up our pain levels substantially. (The same process presumably applies to activity and fatigue; if the brain anticipates that fatigue or pain will result, it will clamp down on our ability to be active.)”
Strange terminology these people use. “If the brain believes . . . ”
You mean if “I” believe, brains as such don’t believe, the brain is a set of organs.
Why would “damaged sensory processing” result in inflammation, fatigue, pain, etc.
what is damaged sensory processing? Surely it is the converse: neuro-inflammation results in altered sensory processing, at least that is what the evidence so far says.
How do you know you are re-wiring anything? Nice analogy but can’t we just say re-learning? why do we need these odd ideas?
I prefer the neuro-immune models of FM, MCS and ME, inflammatory cytokines are released into the blood stream, pass across the BBB and induce microglial activation. Neuro-inflammatory states cause havoc in many neural systems including memory, sensory modulation, cognitive speed and perception. Depression results from neuro-inflammation. In the vascular and musculo-skeletal system, arteriolar width is affected, redblood cell deformity is affected, muscular cramping increases, blood volume is affected etc.
I don’t see a brain “re-wiring” model to solve these issues which may all be present in one person.
Hi Ian,
“Why would “damaged sensory processing” result in inflammation, fatigue, pain, etc.
what is damaged sensory processing?”
When I mentally overexert (like having a too long joyful conversation with multiple persons that costs me too much energy) some of the first signals that I have to urgently stop and take a rest is a flare up of body-wide pain.
Talking (about simple non-emotional-loaded things) and enjoying myself “too much”, hardly something associated with any negative feelings, seems to consume so much energy that it starts a very strong flare in pain and something that resembles inflammation all over my body. Much of the pain and fatigue “sinks” to my legs.
The process is that bad that pain increases 10-fold within minutes. If I ignore the warning signals and proceed further exhausting myself another 5 to 15 minutes I often lose my ability to walk on two legs (having to crawl to a resting place to lay down) and may expect a nasty PEM.
Sensory overload costs plenty of brain power to process it. Having a conversation with multiple persons does so too.
I think it is that exhaustion that costs so much energy that waste and toxic by products of producing energy accumulate that fast (both due to producing energy at a pace higher then we can afford and due to having insufficient energy left to do the IMO continuously needed effort of cleaning up waste) , that it shuts down our mitochondria (high amounts of ROS do tank ATP production) and triggers our nerves to go into high alarm mode. I believe they can sense high amounts of ROS and other waste and signal it to the brain as an alarm saying “destructive exhaustion going on, need to stop urgently!”.
In any case, I learned to “appreciate” pain as a warning signal showing me I need plenty of rest urgently. Near each time I ignored it, PEM followed. So learning to suppress pain in ME/CFS is IMO a tricky thing to do!
dejurgen. I understand what you are saying but describing what you feel does not confirm that “damaged sensory processing” results in inflammation. Phenomenology is a poor explainer of physiology. I do understand because I have had many patients with FM who have great difficulty with sex, as soon as the become aroused the pain increases, this makes sex very difficult for both parties – one of the worst things about FM.
In addition, what you describe is also common to MS and PD. Neither of these diseases could easily be described as “damaged sensory processing” but both are definitely neuro-inflammatory ( as well as neuro-degenerating). People with MS and PD have many sensory problems, such as hypersensitivity to sound and light and cold and heat.
We don’t understand enough about the effects of raised inflammatory cytokines in the body and even less about the effects in the brain. General medical practitioners continue to make the mistake of saying that FM and ME are not inflammatory – they are wrong, the evidence is clear but they do not understand what is actually meant by inflammatory.
Ian,
I appreciate your explanation and input here. With my FMS there is definitely inflammation. I even have lab markers for them. Very high CRP and MMP9. No “cause” other than CIRS from mold and an internal fungus/protozoa that is still being researched. Now possibly this is the cause and FMS is just a descriptive label…..But all members in my family have FMS. Whether or not these things are passed genetically still in question. As my sister and her son also test for this. My mom and father both had FMS. Generations of dysautonomia in our family.
But I also have CIRS and researched mitrochondrial issues and genetic mutations as a possible “cause” for that. I can’t unthink that away. However, my sister mitrochondria was much better functioning than mine, despite her having 50% of same genetic mutations.
But, if my back goes into a spasm and stress starts to tighten up my neck and shoulders, I can get myself calmed down. Get my Therapycane, release knots and bring myself back to a tolerable level. However, I can’t stop with my meditation an over response of mast cell degranulation that that stress induced. (However, there are some people who has learned to do that. I’m not there yet.)
People can with strong meditation and willpower change the function of their body. Look at the monks who sit in cold environments and cause steam to rise from their bodies as they heat them up with there thoughts/meditation. But not thinking us with all these issues will get control as they do. If we could do that…..thinking we would be better. Cause we sure have the will to be better.
Interesting comments about your FMS patients having pain with sex. Mast cell degranulation with MCAS can happen with heightened emotions. It happens with sex for many and they must have mast cell stablizer on board for this heightened expression or sex will cause an issue. Getting upset can also set this stage. And even joy (@dejurgen) can set off a response. Mast cell stablizer were the turning point of my getting better with my HyperPOTS. The antihistamines alone were not enough.
Issie
I don’t mean “I” at all. The brain works on programs which automatically assess a situation far more quickly that you or I can consciously assess them. These programs nestled in the bottom of the brain are very primitive as well: Hopper described them as having all the intelligence of a three-year old. They’re constantly and unconscious to us adjusting our physiology in response to the threats they see in the environment around us.
Moskowitz’s injury had not gotten worse over the 13 years but his brains response to it had. That has nothing at all to do with a belief system.
Damaged sensory processing refers to an inability to filter out sensory data appropriately. A touch becomes painful. Small amounts of chemicals become painful and invoke large responses in the brain – which are inflammatory in nature – and which further sensitize the nerve endings – which produce pain and other symptoms – and on you go. You’re caught in a vicious circle.
So far as I can tell – and I plan to do a lot more reading – these idea rely on neuroinflammation in the sensory parts of the brain which could be started or kept going in the ways you describe.
There’s really no issue, I don’t think, with the concept of “re-wiring”. Studies have shown areas of the brain involved with pain, for instance, lighting up in people with a lot of pain and then diminishing when the pain is reduced.
Cort: So called “‘re-wiring” is generally used to describe cognitive activity to intercede autonomic processes (sort of: thoughts change unconscious mechanisms). I still do not see the value of the concept over and above the concept of learning.
Here is alternative explanation to “By six weeks, the referred pain that had crept from his original injury in his neck to the middle of his back had disappeared. Four months later, pain in his neck began to shut down. Within a year, the neck pain that had bothered him for 13 years was totally gone. Moskowitz had effectively rewired his brain so that he no longer felt pain that area.”
Firstly he recognised it would take time to “unlearn” the painful tension in his muscles.
By using a visual map and concept of reducing pain he was relaxing the muscles around his thoracic spine (notorious for reacting to neck pain) but easier to relax than the neck and shoulder muscles. As this pain receded through relaxed muscles his neck pain also reduced a bit. Continuing to use his visual cueing he managed to relax the neck muscles more and more, slowly reducing the pain. No longer in a hurry and having a procedure he “believed in” led him out of his pain.
Also, who knows what else he did with his posture.
“Moskowitz had effectively rewired his brain so that he no longer felt pain that area.”
But had he? He could have reduced the pain sources.
The accident and subsequent chronic pain Moskowitz had is all too common – very common. I have worked with such cases and seen many of them (not all) learn to reduce their spinal pain by the same approach I describe. In FM the most important first step is to acknowledge that you have a condition that is not going to go away easily, by ignoring it or by “pushing past the pain”. It requires that acceptance. After that the pain often reduces. The reduced anxiety helps to reduce the pain. My point is that that first step has an impact. The more drugs you take the more chronic it becomes. Some drugs, such as steroids and opiates actually increase pain over time. (They are both associated with neural inflammation and allodynia).
I don’t know whether Moskowitz had damaged areas of his brain but I doubt it.
Dr. Hodgson, the neuro-immune model you describe equals classic Myalgic Encephalomyelitis (M.E.)
But since the American agencies (NIH and CDC) established their “CFS” definition, which left out the severe neuro-inflammatory and immune dysfunction aspects present in the Tahoe cohort, studies of which were the sole basis for “CFS”, the patient population characterized as “ME/CFS” or “CFS/ME” includes many who do not have the classic M.E.
Many patients, instead of M.E. have one or more conditions that have been, alas, misdiagnosed as being congruent with M.E. via “CFS”, and therefore may have at least one condition that seems to respond to these brain “re-wire” programs.
Unfortunately, while you may prefer the neuro-immune models of M.E., the highly centralized national health systems of Northern Europe and the federal agencies of the U.S. do not, and they have the power and the public relations machines.
Deborah, Thanks for reminding of that. I do forget that diagnostics is a real problem when discussing these conditions.
I was bedridden for about 2 1/2 years with CFS/ME, definitely had a more severe case and have a caretaker. I was absolutely bed bound, couldn’t shower, and couldn’t even go to doctor appointments.
I started DNRS and Gupta along with meditation and breath work for 2-3 hours a day about 1 year ago. First few months didn’t notice much change, but my chronic pain improved a little. I kept going. 6 months my fatigue level improved some, I was able to go outside, walk around the house. It’s been a little over a year of practicing EVERY SINGLE DAY, and I can now walk between 2,000-4,000 steps a day, go to the mall, drive a little, I even went on a plane a few weeks ago. I’m nowhere near healed, but I’ve come a LONG way in just a year.
I plan on continuing neural retraining until I’m completely healed. I have been on every single drug for CFS and done every “alternative” type of treatment. (Probably 100’s of IV’s) DNRS, and meditation (I believe both are important) have by far given me the greatest improvement.
I’m coming up on being sick for 4 years in October, but I really feel I will be back to 100%, it’ll just take more time. In the meantime I’m still practicing every single day. 🙂 if you were severely sick like I was, you really have to give it time, I didn’t notice any difference until maybe 4 months in, and I practiced 2-3 hours a day. But it helped me immensely!
I really acknowledge your for your commitment and discipline Kristin. May your progress continue!
If you want a particularly inspiring and energetic testimonial Rachel’s website and Instagram page detail her success with the program (mostly severe MCS and food sensitivites, she had already made significant progress dealing with fatigue and exercise intolerance before starting the program using mold avoidance and other treatments). https://resilientlyrachel.com/
On the other hand ME/CFS patients like Jennifer Brea and Lyme patients like Ana Harris (http://anaharriswrites.com/my-brain-retraining-story/) have had negative experiences with brain retraining programs so I don’t think they are for everyone, at least not as the first step to getting healthier. We don’t really have any data for how many people benefit from the program and how many drop out because it is not working or is making things worse.
Agreed. We don’t have studies and as the program requires quite a bit of work and the progress, when it occurs can be slow, I imagine the dropout rate might be rather high.
Plus ME/CFS is not a one-size fits all condition – there are probably quite a few conditions included inside it which will respond to different treatments.
Personally I like this approach because it I think anyone, ill or healthy, who did it would likely come out happier 🙂
My pain experiences:
I have somehow, much like Philip Hayward, learned to increase my ability to “suppress” pain over time. I for example can have my dentist drill holes from the top of my teeth to a position within my teeth that lies below the gums without having any sedation. I do have all my dental nerves and my teeth are quite sensitive to both cold and heat so they are working fine.
While I have far fewer knowledge on how I got to this point then dr. Moskowitz and the methods I used may have more drawbacks then his, I feel I have over two decades worth of increasing skill at reducing pain sensation and have some experiences to share:
* Pain signals are often ridiculously hard to decode. But over the years I learned that very few pain I experienced was “wrong” as in not being a warning signal of some kind.
* It seems to warn me quite well for being close to the threshold of overexertion / PEM; see my reply to Ian Hodgson PhD.
* The FM related pain seems to point to actual microscopic damage / overexertion problems / waste buildup or something similar just like Philip Hayward describes. While my senses are only accurate enough to point the source of this pain to the muscles, tendons and ligaments, Philip may be wright it are the fascia. Or it could be a mix of the muscles, tendons, ligaments and fascia depending on the case.
=> Looking at above three points, suppressing pain “too” effectively may endanger an ME/FM patient to worsen the condition.
* I think I learned to tolerate pain a lot better by “distracting my brain” from using the pain sensing regions. But as pain *sources* grew stronger and stronger over the years (in part due to being able to suppress pain and push myself increasingly beyond a safe energy envelope) I had more and more pain to suppress in more and more regions of my body.
* This gave me similar experiences as Philip Hayward: when I better learned to suppress pain in one part of my body, another part of my body flared up in pain.
* Suppressing sudden short lasting unanticipated pain has always been impossible for me as my brain couldn’t catch it before it acted strongly.
* When I realized I suppressed so much pain and that it both did cost me plenty of mental energy to do so and it allowed me to overexert too often too much, I tried and learned to less suppress pain.
* When doing so, gradually all sorts of pain came flaring up. At times I learned by experience that I was suppressing cluster-like headaches (considered to be the worst possible pain). Then I temporary suppressed pain more to take a more gradual building down scheme.
=> Looking at above points, I learned to not go for the best possible pain suppression as it seems to cost too much energy (increasing exhaustion and with it ME) and overrides a safety alarm. I also learned to take into account my unsuppressed pain levels were about ten times as high and learned to act more as if they truly were that high.
In a manner of speaking I learned my body to trust me I would take it’s warnings serious enough even if the pain levels I felt were a lot lower. That may be an important thing to do as it removes the bodies need to continuously increase pain “to make it clear that you have to pace yourself and be more careful”.
=> Remember the nurses case: her spinal disks are heavily damaged. Being able to reduce pain levels to near non-existent would be a very bad thing if it enticed her to continuously increase the damage on them. That would risk building up damage to the spine AND the spinal cord that much till the spinal cord is broken beyond repair!
* Reducing pain is a rewarding experience.
* Many rewarding experiences go hand-in-hand with being rewarded with a certain amount of dopamine.
* Dopamine however is the addiction hormone! Being unaware of this process may do several things:
– Create an unhealthy need to ever decrease pain sensation far below “optimal” and tolerable levels.
– Ever devote more brain power to do so, risking to deepen ME (or susceptibility to deep crashes when something like a sudden infection weakens you)
– Dangerously ignore rapidly accumulating damage.
– Trigger the typical addiction signs: whenever not supplied with a new dose of “addiction fix” getting *very* anxious. This method could hence actually trigger much increased (sensitivity for) anxiety when not performed well!
– Deplete dopamine levels. Remember: ME patients are known to have a high anxiety state and many researchers find depleted dopamine levels. That *could* point to a hidden addiction mechanism trying to mask either pain or exhaustion (a similar mechanism exists with exhaustion producing even more anxiety IMO).
=> Watch out for “pain decreasing addiction signs”. Part of the addiction mechanism may be not that much different from the addiction mechanism of more traditional pain drugs (minus the additional chemical imbalances pain drug introduce).
This “addiction-!LIKE!” mechanism may even be part of what causes a vicious circle in ME/FM!:
* The brain gets stronger / more powerful at higher (nor)adrenaline levels.
* That allows the brain to better suppress pain.
* It even better allows to suppress fatigue A LOT.
* Doing so is a very rewarding experience for people with bad ME/FM cases; especially if circumstances “force” (by for example needing to care of children alone or making money to not starve) them to keep activity above what they can do without this strong adrenaline boosts.
* Self-detecting addiction is difficult. When the “type of addiction” is undescribed and unknown, it is very difficult. When being in a very depleted emergency state, detecting anything going badly wrong is even more difficult.
* High levels of adrenaline make people blind to their limits. For example a frail old person will try and lift a car to rescue his grandchild AND not question if that is a realistic or safe thing to do. Adrenaline is *designed* to make us blind for our limits!
=> Having a combination of depleted energy, high pain levels, high adrenaline levels restoring significant parts of our lost abilities AND dopamine rewarding us to dig deep in our reserves and create adrenaline boosts can be a *very* nasty and hard to detect combination and *may* be a very generic trait of ME patients.
=> It may even differentiate ME patients from FM patients: FM patients unconsciously able to trigger above mechanism may well create ever bigger depletion of their energy levels. If they learn to suppress pain well they may even “get” ME before they observe they also have FM or largely being able to keep “hiding” their FM side in plain sight.
=> People with increased pain sensation may largely protect from such self-destructive (energy drain) vicious circle but easily get in an ever-increasing pain vicious circle.
=> The above mechanism would suggest plenty of overexert and crash plus PEM cycles in the ME case and a more continuous bad pain level in FM, with over-exertion making them very fatigued but less in a PEM like way. This is close to observations in dominant ME and dominant FM cases.
=> Above !!!HYPOTHESIS!!! does not suggest ME (and FM) patients are addicts or sensitive to addiction but may, out of desperation and lack of other options, trigger an addiction like mechanism that is far more costly then anticipated.
Nurse Jan’s case, while providing very beneficial results, shows signs of such dangerous (prone to crash when outside circumstances suddenly increase load IMO) mechanism:
“Moskowitz told her to look at the brain maps seven times a day, but Jan… …looked at them constantly….
…She told him that she felt that she had been asleep for a decade, and now all she wanted to do was to stay up for 24 hours a day and catch up.”
=> “constantly”: both strong willpower ?and? dopamine plus avoiding drops in dopamine?
=> “all she wanted to do was to stay up for 24 hours a day and catch up”: years long adrenaline “high”? Years long seems impossible but I believe I had that too and still have it to some extend.
NOTE: I am NOT discounting Moskowitz’ ideas but adding warning to it to not rush in blindly.
And adding to dejurgen thought and someone else above……I don’t personally think it’s a good idea to suppress or not talk about or acknowledge things that have happened to us or how we feel about it. People with PTSD internalize their trauma and until it can get worked out in their thoughts/mind they continue to have flashbacks, disturbed sleep and phobias. I also strongly believe we can hold those “pains/memories” in our muscles/body and unless released it could potentially turn into something far worse. For example: I’ve had massage that caused me to cry when working on stuck knots. The massage therapist would ask me about certain things in my life when this happened. If she could get me to talk about whatever had popped into my mind and I could talk about it and cry…..the knot would be released. She says we hold memories and pain in our body. It could be muscles or organs. We need to let them go. And suppressing it more may be harmful.
But, I do agree that we don’t need to let our illnesses consume us and stop us from living. We have to find a way for it to not be the definition of who we are.
I’m like dejurgen in emotional interaction…..it drains my reserves. But, I think it aids to healing and is a necessary part of the process. Maybe taken in small spurts and processing at our own pace….and only we can decide how fast or slow that is. Don’t be afraid to say…. got to rest and take a break now. Just be sure if it’s from a friend to let them know it’s not them but your bodies overload switch got flipped. Then go back with a ((((hug)))))) and try again.
Issie
Moskowitz’s and Hopper’s approach is coming from a different place. They’re approaching the situation from the idea that the brain is essentially broken – that its sending out massive amounts of pain and other symptoms inappropriately.
The pain response should diminish over time not get stronger, small amounts of chemical shouldn’t cause convulsions, etc.
. Paying attention to those symptoms and thinking about them only reinforces them. This is neurons that fire together wire together – and eventually get stronger.
The idea is to slowly change the programming so that brain focuses on other things than the pain response, or the chemicals its encountered.
A key part of this process may be that when the brain gets out of its “alarm mode” not only is more energy available to go to healing, etc. but that it releases the brakes it has put on movement and energy production. Could the brain – or a limbic system dysfunction – be effecting energy production? Could it move the body into a state of Dauer? Both Cortene and the Metabolic Trap target the limbic system I believe.
The goal, then, is not to get the stress/pain response engaged. Thus EVERY time Moskowitz and Jan felt pain they initiated that visualization process. Every time the stress response is invoked Hopper’s system it gets fought back – wrestled back, hopefully – so that it’s not going bananas anymore.
I hear you Cort when saying:
“They’re approaching the situation from the idea that the brain is essentially broken – that its sending out massive amounts of pain and other symptoms inappropriately.”
But let us be honest, nurse Jan with
“she was told her back had deteriorated so much that surgery was no longer an option.”
SHOULD have at the very least a certain amount of pain warning her to be very careful with doing ANYTHING that affects the position of those damaged disks.
While I congratulate her with her devotion to the process and the results she got, she is a VERY poor example to illustrate a process in her brain was broken. The massive amount of damage does necessitate massive amounts of pain.
It being that bad that she considered terminating her own life did warrant to override this pain mechanism. I can see that. But please don’t call this an example of the brain going wrong! It far more resembles replacing a fuse that keeps melting down with a thick copper wire. It’s trading off certain strong discomfort and disfunctionality for a high unknown risk.
My point is that overriding pain mechanisms that strongly is gambling that the body is plain wrong. In my experience it rarely is when it comes to pain but others may have different mileage.
I suggest to consider that the actual source of pain is real and pointing to serious problems and risks. I suggest to not suppress pain for the full 100% either medically or by mind techniques, surgery… so that you still have the warning system in place and realize it likely still points to real dangers to avoid.
I now prefer a massive reduction in pain over 90% rather then gambling going the full 100% will be safe too. On top of that, I’d like to point out that there are plenty of possible pitfalls in trying to even reach that 90%. In my case it took me over two decades to get there. Sure a good guidance by renown doctors will help make this process both quicker and safer. But when someone on HR gets that result in a few months by watching a DVD or reading a book I’d advice them to watch out for signs that they may be “too successful” at it.
And yes, I do imagine someone in really bad pain longing soooooo much to not feel that pain again. I have felt pain far beyond my imagination (imagination when being healthy) too. And I have pushed the art of reducing pain too far before. That’s what I warn against and wish to share my experience on the topic here.
I agree to some extent with the idea that Jan’s brain was not necessarily “broken”. Moskowitz’s was – his pain had spread and spread and was out of bounds relative to his injury – which is where most people with FM find themselves. His case is more relevant.
I would say that Jan’s brain was not working as well as it could though. If the goal in life is to be active, to participate, to have a productive life then it was failing her. if the goal of the brain is to serve the organism’s needs then something was not right. It may be that all our brains are kind of “broken” in the sense that we’re not making full use of them and are allowing them to fall into non-productive traps.
Your point regarding further damage is well taken. I imagine, though, that if you’re in a lot of pain then having to worry about too much pain suppression might actually be a welcome trade-off.
Moskowitz does talk about pain signals that occur in the future – so they do happen when following hsi program – and if the brain thinks an injury has occurred or is imminent I imagine but don’t know, that at least with this program, it will register pain.
I appreciate that you are flexible and that you carefully examine the basis of your ideas and others and try to think things out for yourself – to the extent actually that I can hardly ever remember seeing in others.
I agree that going slow or being moderate with any treatment option works best, and I don’t see how there could be a one-size fits all treatment in this disease. The recovery stories section of Health Rising – with all the different modes of recovery – makes that an impossible idea.
One goal at HR is simply to present differnt possible treatments and see, hopefully, over time how they sort themselves out.
And I Sir Cort do appreciate your fine skills at explaining such hard to explain topics. You do a very fine job and you would well deserve to be once honored with the “Sir” title :-).
I’m known to look at everything from a dozen of angles and do it over time and again before rushing in. I admit to that. That makes me very sluggish in trying things. But it also compensates this sluggish rate with a good hit-to-failure rate giving me a more then decent improvement rate.
Some appear to do far better then I on “try now and sort it out later” methods. Disaster nearly every time for me. I can only be happy for those who succeed in it!
“One goal at HR is simply to present different possible treatments and see, hopefully, over time how they sort themselves out.”
You do a very fine job a presenting and researching so much information!
I try and do a job at sorting it out. That’s complementary. If people complain about my lengthy comments: nothing a collapse or expand comment button can’t fix :-). I know at least some read it so it’s not a total waste :-).
It’s important to note nurse has not become immune to pain. She’s simply shut off the pain signals emanating from that OLD injury. If she moves her back in a way which could cause her a NEW injury – her pain signals will return. I imagine that after more than ten years dealing with this condition and, as a nurse, knowing exactly what has occurred – she is very careful with her back!
The fact that she’s not in pain now is actually beneficial to her back and her overall health. Why? Because instead of being immobilized in her chair – causing further weakening to her back – she can go out, walk, ride bicycle, etc. and do the normal everyday exercises which strengthen her back. Plus she’s not onpain killers which are doing god knows how much damage to her body.
It’s amazing that you were able to suppress the pain so effectively but please note that you weren’t doing the Moskowitz program. We can tell that because in the Moskowitz program enormous amount effort is put at first but over time the effort diminishes and eventually becomes almost non-existent as you change the programming of your brain. You, on the other hand, ended up working harder and harder over time.
Keep me posted Cort. I’m open minded and want to support your chosen path. I’m hoping it helps. I believe our Mind/Body connection plays a huge role in our responses in life.
Issie
“as a nurse, knowing exactly what has occurred – she is very careful with her back!”
That is a VERY important point that needs to be stressed more in the blog IMO.
Know the injury is there and know it’s extend well. That at the same time is the very RISK in applying this technique to FM (an ME). Please hands up who can tell what the EXACT type and extend of damage is when having FM before applying this process. In my opinion Philip Hayward is one of the few people on this planet even getting close to understanding this. Most FM patients stand by the notion that their pain is just “plain wrong”.
How on earth can such a patient take the source of this pain into account when the “old” pain is no longer there after the process? Philip and I were quite alike in developing skills to suppress pain. But what makes our cases so much different is that he learned to see so much earlier then me that the source of his pain was real and physical (plus a brain modulating component on top of it). He then self-learned to heal much of the underlying issues.
I only realized when it was much too late. And I only recently learned to reduce issues (mainly in the abdomen and brain) decreasing pain over there.
Not having an open mind for sources of devastating pain and exhaustion in FM and ME being caused by real physical damage or very severe biochemical imbalances yet still reducing the symptoms with mind techniques is like diving into every river and lake you visit without first assessing if it is deep enough. Sure it can go fine for some people and some time. But the risk of hitting a rock just below the surface of that water that appeared to be so deep is real. Plenty of people got their backs broken and paralyzed for life by skipping a few checks and safety measures to get quicker to the joyful part of diving.
Getting back to the original quote: “as a nurse, knowing exactly what has occurred – she is very careful with her back!”
Reducing pain sooooo much is an euphoric experience. After such harsh living conditions VERY few people would be immune to the arousing effects of this euphoria. Many very smart and educated people stepped into such pitfalls.
“all she wanted to do was to stay up for 24 hours a day and catch up”
points to her having a strong increase in such euphoria causing hormones. Such feelings and desire to go on and on and on are not healthy in nature as they steer the body and mind to push beyond its boundaries a lot.
SHE might be able to avoid damaging her back and self-reinforcing exhaustion IF she has a very good health otherwise.
Heck, even I lived for three years such euphoria with both really strong pain tolerance and more energy then ever before DESPITE me now knowing I had severe breathing deficiencies and being intolerant to half I used to eat since being a few years old.
Trying to do so while having a debilitating energy deficiency disease (like ME and to an extend FM), having nearly no clue what actual damage acts as a source of the underlying pain and lacking the full *personal* follow up of the best doctors like Moskowitz (by going the cheaper DVD or book route) is a wholly different thing!
“but please note that it wasn’t Moskowitz!”
It wasn’t and I am not going to claim that. But I see quite a number of parallels.
“In the Moskowitz program enormous amount effort is put at first but over time the effort diminishes and eventually becomes almost non-existent as you change the programming of your brain. You, on the other hand, ended up working harder and harder over time.”
He may have had a source of pain that could be sufficiently safe “contained”. He may or may not have developed the skills to avoid further damaging his neck simultaneously while developing his pain reducing techniques. As such, if he did, his brain could have learned to “trust” him to not doing anything harsh that could risk his neck deteriorating further.
Over time, the combination of less pain, less brain overload due to this pain, less pain killers with plenty of side effects AND being sufficiently careful with his neck plus some light exercise of it could have allowed his neck to heal and physical damage to fade away.
I on the other hand failed to contain, let alone decrease, the source of my problems. Quite the opposite: being able to suppress pain and early fatigue so successfully I indulged in overexertion and “living to the fullest”. I very likely accelerated the growth of underlying physical problems.
THAT is very likely why I needed ever more mental effort to suppress the growing levels of pain: ignoring the warning signals and living the full live I rapidly increased the amount of underlying physical causes for pain so I needed to suppress ever bigger and more plentiful sources of real pain.
NOW, I slowly manege to use less effort to suppress both pain and fatigue and slowly heal. So the process may be not that much different from what Moskowitz uses. For sure he likely is more efficient at it. But I made the fatal mistake to start and continue the process AND suppress signs the underlying problem was growing at ever increasing pace.
He on the other hand *may* not be completely aware of his excellent skills to avoid triggering the old injury and allow it the rest it needed to heal itself. Suppressing the pain while sufficiently self-constraining the use of his neck may have sped up the process. Once his body “trusted” he would be careful enough to not endanger himself that “trust” plus his reduced pain levels could have allowed his neck muscles to relax and that in itself could have helped self healing.
As said, I am not against the idea and process he developed. But I strongly would encourage to learn the process of exploring what triggers and reduces pain and fatigue first and keep doing it while being on the process.
I also would strongly encourage to watch out for the combo dopamine/adrenaline. It is KNOWN that adrenaline is a big issue with the majority of ME patients and dopamine deficiency has been observed in many studies. Data on FM is more scarce. Now starting a self rewarding process to reduce pain could strengthen their role.
Being open minded (and looking out for sings) that one can affect the other isn’t such farfetched proposal. As neither is being aware that both increased dopamine and adrenaline levels can mask their presence quit well till it’s much to late.
So while dr. Moskowitz and my process are different, they show quite a number of similarities in the process. With it may also come similarities in potential pitfalls.
But couldn’t your worry about the “rock” apply to just about any treatment? Any treatment could push the body in a way that seems helpful at first only to realize later that it didn’t work. Or treatments push the body in the wrong way immediately – and then you have to recover.
Treatments that suppress the pain response such as opioids can be quite helpful if done correctly. Sometimes its the pain response itself that has gone wrong – which is a kind of physical injury – but not to the body per se.
Until we know the basis of ME/CFS then everything is a crap shoot and carries risks. While you hit a rock I imagine that most people who find they are progressing – particularly if they are progressing slowly – as happens with these programs – are actually progressing (???). Could the slow nature of it be a positive aspect?
That said I do know of people who have progressed in one way – tried to ignore negative things that were coming up – and then got whacked! Those people include myself by the way (lol).
May I suggest that you are on the very skinniest of branches thinking that you know better than Moskowitz what happened in his case. Moskowitz is a pain specialist and tried everything he could = from many types of drugs to physical therapy – to fix his pain. It only started to diminish when he applied his techniques to visually calm down the pain pathways in the brain.
Is it possible that you were actually not doing damage to your body with your techniques – that you actually may have been helping out but that a parallel process was occurring which you ultimately could not evade?
“But couldn’t your worry about the “rock” apply to just about any treatment?”
Sure I do. I most definitely do! That’s why I learned to be careful and to not dive head in first.
That’s why I hope to entice people to be careful in what they try and do, and that includes my hypothesizes that I very often (in the different topics I comment in) word with “might, may, hypothesize, could, risk, be careful, it could badly backfire, only do this under medical guidance, contact a good PT rather thentrying this yourself…”.
I think I can say that I use these precaution words well above average in my comments, hoping to not give people the impression I have the answer and it’s safe to follow.
NOTE: please tell me when I fail to make this clear!
That is what I often miss in both “laymen” and specialists being genuinely excited in what they reached as improvement. There is a clear risk for “overreaching”. For sure their experiences and knowledge has plenty of merits (at least the many genuine ones). Being excited to have such huge improvement does award thinking it may help many more others. And it can and will! But that doesn’t make it a “one size fits all” nor a sufficiently safe process. We near all had backfiring we could hardly or not recover from (from following less safe routes).
At the very least I hope that most people (who read my lengthy posts) do realize I try to tell I do NOT have the answer and I wish to share ideas and hope people add to them to either debunk or improve them!
I hope you can see I changed my mind and ideas often after peoples input and critics. And I will continue to do so. Leaving plenty of uncertainty allows better to improve upon an existing practice and idea IMO.
The opposite of doing so is displayed by so many conventional doctors saying “You can’t be possible that ill, I checked all and there is absolutely nothing wrong with you” and, when you doubt they are wright add “I am the specialist here, do you think you are the doctor here? If I say there is nothing wrong then there isn’t. I’m the professional here. It’s in your head!”.
Also, think about this……they were both on massive pain medication. That has a rebound effect and can also stop working. The more you add, the less effective it is. The more you need. When it wears off, the stronger the response and the more aware of pain you would be in. They both got off that cycle and that in itself would tone down the intensity of pain. Also their minds would be clearer as they weren’t “doped up”. With clearer minds we can for sure have better control of our perception of what we are experiencing.
Issie
“May I suggest that you are on the very skinniest of branches thinking that you know better than Moskowitz what happened. Moskowitz is a pain specialist and he tried everything he could”
I hear you. But, despite what it seems, do not believe I know what happened. I do however suggest that there may be other things to consider, with the plentiful “*may*’s and *mights*” in place.
May I return the question and ask what is the actual scientific EMPIRICAL evidence that his method works broadly and has a low incidence rate of severe side effects in the long run?
It seems to me that there isn’t any! A few very strong cases including his own and many people having good experiences isn’t such evidence.
True scientific empirical evidence !requires! keeping track of all cases participating in the scientific research. That disqualifies ALL successful cases of people who have improved by reading a book or buying DVDs and using the methods in them. Tracking those sufficiently well is plain impossible.
It seems to me dr. Moskowitz is a true pioneer in many ways (and I DO respect that a lot):
* he offers insights previously not known to medicine
* he has a vast amount of medical knowledge and even more so specialized knowledge when it comes to pain (and certainly overwhelms my knowledge of both!)
* but his current method seems to operate on both the edge AND fringes of science. It seems his current methods are based upon science but not proven by science. That is a vast difference here!
As an accomplished scientist in a totally different domain, I do believe I can spot when new knowledge is running in front of science or call it pioneering. That is by knowing a general set of requirements for calling an advancement “scientifically and empirically proven”.
The evidence that it is a proven effective and safe method in a broad range of circumstances may be out there but I certainly did not see it yet. If so, his current insights may be both visionary and ahead of its time. Until then, be aware that it is not science yet but only build upon science.
In short, a hypothesize that demonstrated it can achieve some great results in some cases. But it lacks real safety checks.
Dr. Moskowitz being an accomplished pain specialist certainly is a strong selling point. But know it comes with one big disadvantage: a scientist in near any field cannot easily backtrack on published ideas nor adapt them in a big way without damaging his career in a major way.
So questioning things like safety and how high the success rate is will have to come from outsiders, at least so long as he doesn’t come up with empirically backed up figures.
So do I call myself smarter and do I try to pretend I do know better then he does? NO! But when my experiences are strongly pointing to potential severe risks of his therapy then I strongly feel compelled to point this out at the risk of appearing pendant or snobbish.
That’s not that different then the many patients warning that thyroid supplementation caused them a bad backfire. Here too there are plenty of patients being very happy with it. And it is backed up by plenty (much more then in this pain case!) of bright scientists. Are they arguing those are wrong too? Not in my opinion, they are pointing to these ideas not being a “one size fix all” and having had devastating effects on some patients health.
They too question this unproven science as being one size fits all. And often they offer alternative hypothesizes to see how well they fit with other patient’s experiences (by looking at how other patients react and share their experiences).
Pacing for example is one of our biggest tools helping most of the patients to some extend. It’s born out of patients questioning the “proven” conventional knowledge by thousands of highly specialized doctors and professors in medicine (actually still about half the entire worldwide medical community) that moderate amounts of exercise cannot ever deteriorate a CFS patient health. Their questioning and proposing many alternative options mixed with the knowledge and vision of some medical pioneers to offer us the best they could offer: a good and well described pacing protocol with clear notes on its limits and boundaries.
Linking it to the new pain ideas, in years past a single medical schooled pioneer might have seen such good experiences with pacing that he’d pitch it as a wonderful tool leading to full recovery when applied well. Some would see no problem in that, but I would. And now that doctor would still be a very valuable pioneer!
End of ranting; sorry for doing so :-). Having experienced the cost of extending ideas similar to the ones proposed !too far! forced me to write a series of strong warnings to be careful and moderate expectations and even more so determination (as some propose that when getting worse you only need more determination: can work or create disaster IMO).
I’d very happily be proven overly cautiousness. If not, I hope it’ll save some from making the same mistakes I did.
“Is it also possible that you were actually not doing damage to your body with your techniques – that you actually may have been helping out but”
Quite possible, but highly unlikely.
As said, (since the last two years) when I overexert then an early warning signal is pain levels to increase about tenfold body wide in as little as 5 to 15 minutes depending on the occasion.
When I then pace and rest abruptly, crashes and PEMs are really rare. Walking capacity however is by then already diminished from about 800 meters when rested to about 100 meters at those instances.
If I ignore this signal and keep pushing myself for as little as 5 to 15 (depending on the occasion) minutes I near always end up with a crash and PEM (about 80 to 90+ % percent of cases). My walking capacity consistently near completely or completely disappears. I often end up being not even able to walk “proper” on hand and feet but have to crawl on hand, feet and my belly to move to the nearest resting place.
Other things often follow in rapid procession: brain acting weird and confused, speech impairment, breathing problems, vision problems…
I do feel this points to something more then a mere problem with poor brain adaption to pain. What pain to start with? Each of these many instances had “fairly reasonable” and well acceptable pain levels just 15 minutes earlier….
And that is just the most blatant of plenty of things pointing the same direction.
So I tend to see these pain surges as a warning signal that something physically and or biochemically is really getting out of hand *at the places this pain appears* (meaning body wide).
One can argue “but you only exerted your brain”. I’d say true, but it seems to provoke a very quick massive body wide surge in inflammation, leading to the very quick following surge in body wide pain. And no, that doesn’t need to be a “wrong” brain signal IMO. Oxidative stress going out of control (due to exertion) and shutting the entire body down in “full stop” mode seems reasonable to me too. Remember oxidative stress, or better hydrogen peroxide, acts as a signal molecule switching mitochondria to Dauer in the Naviaux/Davis hypothesis.
So I value Phillip’s experiences. I’d not go that far to state that all pain is (near) exclusively due to underlying physical causes. But I do believe that in near all (FM and ME) patients a (patient depending) mix of clear physical causes and some brain pain amplification and/or attenuation is present.
So “treating” the brain amplification part as presented by dr. Moskowitz and others’ methods can IMO actually *help* decreasing underlying physical damage *under specific conditions*. Under just as much other *specific conditions* it may just as well create havoc.
Phillip was able to radically diminish pain levels by “just” addressing the underlying problems and multiply his exercise capacity “on the side”.
Combining both the brain thing and successfully tackling the underlying causes may be quite powerful, but that is NOT the method described in this blog. Using the brain thing alone without appropriate “side measures” like increased pacing and tackling underlying causes feels like riding a rodeo.
As to the question: “do I think I know better then dr. Moskowitz?”. Let me phrase his own words in following interview prohealth.com/library/treating-chronic-fatigue-syndrome-and-fibromyalgia-interview-with-david-moskowitz-m-d-21454
“ImmuneSupport.com: You said that “to the extent Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM) are autoimmune diseases, I can treat them.” Please elaborate a bit on your belief that CFS and FM are autoimmune in nature. As you know, debates about the true nature and pathology of these diseases are ongoing.
Dr. Moskowitz: Because these are difficult diseases to diagnose and treat, very little is known about them. For a long time patients who suffered from CFS or FM were thought to be “making it up” or somatisizing psychiatric issues. There is increasing recognition that FM and CFS may be autoimmune in nature.”
Now that contains two big issues:
A) He implies that applying this method successful for CFS/FM depends upon both diseases being (largely) auto immune diseases.
B) By his answer to the question he implies to say that if they are auto immune diseases, he can treat them.
=> A) is still highly debated in medical science. Some blame hormones, others a protein like thing in the blood, others neurological problems, some the immune system (which can be either auto-immune or some other immune problem)… So this is not settled science yet.
=> B) reaching some results in for example psoriasis is no *proof* his methods can treat auto-immune diseases. When I have a flare in vitiligo, an immune and /or auto-immune related disease, then pacing more can help it tone down and block the flare. That is no proof that pacing can cure auto-immune diseases in general.
So this interview, very likely containing his own words, make the idea that applying the brain plasticity treatment to ME/FM is an actual scientifically proven and tested method VERY questionable to say it mildly.
Not saying that it doesn’t or can’t work. Saying I can’t argue with science if it ain’t there (at least not as in remotely solid empirical science). That in itself warrants caution IMO. We ME/FM patients had a few too much disappointments and things going wrong already.
I’m afraid that’s a different Moskowitz…You’re referring to a 2003 interview with David Moskowitz – a nephrologist.
Michael Moskowitz – a pain doctor – is the doctor featured in Doidge’s book – http://www.neuroplastix.com/styled-4/styled-4/mhm.html
Again….. please consider……they had both been on massive pain medicine. When that wears off the pain response/sense is stronger. There is also rebound pain with them. They both got off those and their minds were clearer. Therefore, the perception of pain probably diminished as they weren’t having rebound or ineffective breakthrough from tolerance. When our brains are clearer, we can make more sense of our perception.
Very interesting discussion, all. I’ve just been struck very forcibly by something Issie just said. Prolonged use of painkillers might result in a strong rebound of the pain when the medication is discontinued. Maybe I did myself a big favor by never relying on painkillers. It wasn’t just heroism on my part; all painkillers that actually suppressed pain for me, had side effects such as gut upsets. Most painkillers don’t seem to do much anyway, for FM pain.
The only time I “relied on a painkiller” was during one of the worst flare-ups of pain at a specific spot, that I believe was an actual injury such as a tear in the fascia, or a complex “pinch” of fascia (always resulting from a tricky movement such as reaching behind me). Then, I took Nurofen, and it actually did reduce this kind of pain. But only for about 3 days, because my stomach would be too distressed by then.
I’ve gone about 12 months now without any occurrence of these types of provoked flare-ups; they were gradually diminishing in frequency. At my worst, I seemed to have one of these specific injuries somewhere on my body “about half the time”. I guess the frequency dropped to about one every 3 months, over around 5 years of gradual improvement, before I stopped getting them altogether. I’m pretty confident now of “pushing” into challenging stretches and positions without provoking anything other than momentary twinges. And I’m still working on breaking through the limitations I’m becoming aware of, for more challenging stuff that I’d once never have dreamed of attempting. The last milestone was that I managed to feel a heel actually contact against a buttock for the first time.
Wow! Talk about a downer!
Norman Cousins was an American political journalist, author, professor, and world peace advocate. After an exhausting trip to Russia, he became ill with a severe connective tissue disease. When the doctors all but gave up on him, his wife moved him into a hotel room and found a doctor who was willing to administer high dose vitamin C IVs. He also directed his wife to find as many funny movies as possible and he watched these whenever he was awake. He recovered from this serious bout of disease which was later diagnosed as ankylosing spondylitis, a painful collagen disease. His recovery is documented in his famous book, Anatomy of an Illness.
To anyone who can’t see an end to their suffering, to those who feel hopeless, to those who believe their problems are different from others’ or worse than others’, please know that I have been in your shoes.
I had been ill for 28 years when my doctor recommended DNRS. I didn’t believe it would help and I waited almost a year before I decided to try it.
The DNRS is helping! I had chronic migraines and environmental sensitivities. Since I started DNRS, I have had only one full-blown migraine.
And my brainfog has greatly decreased. My energy has increased a little.
I’m not cured. But I’m hopeful!
This is NOT a placebo. It’s all about forming new neural pathways, just as you would teach your brain to do after a stroke or an injury.
The program takes determination, and you have to put aside your doubts when they rise up — and they will — you will have rough spots, sometimes long rough spots. But the program encourages you to keep training even when the symptoms seem unbearable.
This goes way beyond positive thinking or self-talk. It’s hard work, requiring fortitude — and if you are reading this message, then you already know you have fortitude; you can do it.
I am now able to briskly walk a mile three times a week, and last week, for the first time in years, I ate ice cream. It was heavenly!
Keep trying new things. Love and light to you.
Twenty-eight years and migraines have disappeared. Whoa. Thanks for passing that on and thanks for the encouragement.
Cort this is something simple. I have had CFS.ME for 21 years, but rarely
am I held captive to the flu or a cold. I simply take Colloidal Silver. I make
it myself ($$$$), and the dosage is not hard just take about 20 mis 3 times a day when you are like that. Contrary to some beliefs, you will not turn blue, and it will not hurt you. It is antiviral and antibacterial.
I should clarify regarding the migraines —- before starting DNRS I went on a migraine – avoidance whole food diet. I owe much of my migraine improvement to diet. However, with DNRS, the migraine situation improved even more, and I am gradually introducing foods that were triggers before. Hope I didn’t mislead!
To those who don’t believe that brain retraining is a cure: it may not be.
But if you want to improve your mood, reduce anxiety, reduce brain fog, and be better able to handle environmental stressors, then trying one of the neuroplasticity programs may change your life in very positive ways. : )
I should also state that I am in NO WAY ASSOCIATED with Annie Hopper; the only connection I have is that I bought the DVD’s and practice every day.
This reply is for Billie Abbott: Apparently you’re unaware that it’s almost THE definition of ME/CFS to never have the flu. We don’t have the normal fevers that would kill off the flu bug, or cold virus, so we stay sick w/ME/CFS. The fact that you’re “rarely held captive to the flu or cold” means you have ME/CFS.
And how is that improving?
Unfortunately there was no “response” box after Frances’s response to my post about TM, so I’ve come all the way to the bottom of the blog.
Frances, I always thought that “secret” mantra stuff was a bunch of hooey, especially since I was given my mantra in Brazil (and they pronounced it wrong).
An Ayurvedic teacher showed me in a book on Ayurvedic principles that there are four mantras, depending on your birth month. She was one of the teachers who helped me learn how to make TM useful for me. *She also taught me how to pronounce the mantra properly!*
It takes many teachers, sometimes, in any situation.
I have had ME/CFS for 35 years. I conservatively estimate that my husband and I have spent $5000 out of pocket each year for various treatments (not covered by insurance) that I hoped would be the answer. That is $175,000.
I have gotten better, but by no means am I “cured”. I work but can’t do housework or yard work or aerobic exercise. Symptoms are always changing and just when I get rid of one awful thing, another pops up…like trading the devil for the witch.
I went to Amazon to check the reviews on the DNRS book “Wired for Healing”. 30% were 1-3 stars and even the 3 star ratings were bad. I don’t get excited about 5 star ratings because these are often put on by shills.
Finally, would DNRS heal an AIDS patient or a cancer patient?
It is time for the ME/CFS community (and that includes me) to stop hoping for “magic beans”. Read “Osler’s Web” by Hiliary Johnson, a journalist with ME/CFS. It follows the ME/CFS epidemic from its beginnings in San Francisco and LA in 1980 as it spread around the country and through years of researchers coming close to the cause and then being shut down. It is 700 pages and tedious but impeccably researched. If you can’t concentrate long enough to read it, have a family member read it to you. The education will be good for them too.
I haven’t read this book but recently have been looking into retrovirus. It’s one thing that makes sense. I wrote about it on Healthrising forum. This is the direction my doc and I have just taken with me. I have been on a few new additions for a week and already feel a fog is lifting. I agree, there are no magic pills…..it is going to take alot of work and determination and Detox to get better.
Issie
There always seems to be the retrovirus hope but numerous efforts have been made to find them – including recently by at least three really excellent labs (Ron Davis, Ian Lipkin and the BSRL I think) and all have failed. Two major attempts have been made to look for specific retroviruses as well. I wish it had been that simple and easy! Nevertheless, good luck with it.
The book is not the course. If you’ve read the reviews then you know that the negative ones largely come from people who wanted the book to be a how to manual for the course – which it is not. Since the book doesn’t actually state what’s in the course a critique of the book should not apply to the course.
It’s possible that HIV/AIDS and ME/CFS are very different illnesses. I would suspect so. ME/CFS may have immune issues – the nature of which are mostly still in doubt – after decades of searching. The massive destruction of an important part of the immune system was, on the other hand, documented rather quickly in HIV/AIDS. It results in all manner of opportunistic pathogens invading and eventually killing off untreated HIV/AIDS patients. None of those pathogens have ever been associated with ME/CFS. In fact, no pathogens have definitively or even halfway definitively or even a quarter of the way definitively associated with ME/CFS.
Moskowitz and Hopper appear to believe they are mostly dealing with sensory and nervous system issues – issues which could, given where they are taking place, impact many systems. I suspect they believe these are different kinds of disorders that we are used to – disorders than are hard to discern because they deal with deep brain issues which are difficult to measure – and largely invisible – but could cause a tremendous amount of havoc. That seems like a potentially good model.
I realize it is an unusual program but I did not mean to present it as if it was some magical program that could make your ME/CFS suddenly disappear. Certainly the people who’ve stated that after a lot of work they are making slow but positive progress aren’t making that statement. Nor would Moskowitz’s patients who only see progress after an immense amount of relentless work. In other words – no magic beans….- just the opposite, in fact.
@Cort, being in attack and defense mode isn’t helping you (or dejurgen) to feel better. You are free to try whatever you like. I appreciate that you are willing to share your next chosen path.
There will always be people who will disagree with us. I think some of the ones who speak up so loudly are the ones who are truly searching for answers. If they perceive that something may cause ones that they care about to either be hurt more or mislead…..I applaud their trying to stop what they perceive to be someone “jumping from a cliff”. If you had such strong feelings, admiration and respect for the person and felt that way towards them…..you’d do the same. You guys chill…….
It probably won’t hurt you to try it. I’m sure you may get some new skills from it. But “IF” it doesn’t work as well as you hoped…… look at what it has taught you and don’t feel defeated. And if it gives huge improvements, yayyyyy, bravo!
Issie
Betty, see my post, above.
Even if DNRS or Gupta does not cure you, it will probably make your life much better.
I did what you did — looked at reviews on Amazon. I was left with the impression that this was a scam. It took me a year to decide to do it.
Also, you have to be able to do it, that is, you have to be able to practice every day. If you’re too exhausted or too ill, or if you’re grieving, then you may not be able to practice.
If you opt not to try brain retraining, another option is meditation. Studies show that calming the amygdala reduces pain and helps reduce the stress response. And it’s totally free.
Oops, my mistake. Thanks for pointing out Cort!
I had however seen his site, but I was confused. As Michael H. Moskowitz seemed near invisible on the internet I guessed it had to be the other person.
But (had to redo due to browser crash; should have saved :-(, plenty of work filtering results) something odd turns up:
When looking up “Michael H. Moskowitz” on scholar.google.com excluding patents and citations to narrow down search results, results are overwhelmed by other people. One remarkable name pops up:
Michael *A* Moskowitz with an utterly impressive research and publication list on… …neurology including pain and neuroplasticity.
The *only* paper containing the terms “Michael H. Moskowitz neuroplasticity” on google scholar (a fairly good tool to find scientific publications) is spandidos-publications.com/10.3892/ijmm.2013.1476
… from Michael *A* Moskowitz scholar.google.com/citations?user=PGLDt7kAAAAJ&hl=en&oi=sra
This person works at Harvard Medical School and their is no single reference to Harvard in Michael H. Moskowitz personal page you linked too. Also the pictures don’t add resemble so it appears to not be one and the same person named Michael A. H. Moskowitz. These are two different persons.
When looking up “Michael H. Moskowitz” other people called Moskowitz including the Harvard professor overwhelm search results.
When trying to narrow down the results to either “MH. Moskowitz” or “MH Moskowitz” I get two publications named:
“Use of lidocaine patch 5% for chronic low back pain: a report of four cases” and
“Pharmacotherapy of neuropathic low back pain”
They are cited (referred to by other authors) 49 and 39 times respectively in journals with impact factors ranging between 2 and 3. The higher the impact factor, the “more respected” a journal is considered.
Now let me start to say that I failed to find any reference to neuroplasticity in either publications. Then let me also add, not trying to boost, that I have both publications cited a lot more and in journals with considerably higher impact factor then those two publications and I have many more publications. Take into account I had to retire early from this field of research. That decreases citations quite a bit compared to staying in the field as other researchers tend to forget you over time if you leave the field.
When I read Michael H. Moskowitz his resume, “He served as a member of the Examination Council for the American Board of Pain Medicine from 2006-2010 and as the former chairman of the Educational Committee of the American Academy of Pain Medicine. He has also served on the American Academy of Pain Medicine’s Continuing Education Committee, Enduring Materials Committee and chaired the Academy’s Website redesign committee.” sounds very impressive to me.
If that is true, his modest publication list doesn’t match such high profile the least. I don’t remember having ever seen such mismatch between scientific accomplishments, seating many years in important national committees and the accompanying publication list…
Also looking up “Michael H. Moskowitz” on duckduckgo on “US settings” did result in oddly few real scientific material. Mostly things referring to his website. Many to health websites discussing his scientific methods. But the science they are discussing appears to be rather “ghostly”. Odd.
So I looked further to http://www.bayareapainmedical.com/, the website of his pain clinic. On either “Welcome” or “About BAMPA” I expected to see the picture of a big and luxurious building, as that often seems to “express” to people the importance and high level of quality of the clinic. All I did find on the entire site was a picture of yachts in the Bay. Odd…
So looking further. When looking at “practitioners”, I expected to see a big list of doctors with roaring titles and their specialization or even the ability to select departments. What I did find was no single name under that tab and “info for practitioners *visiting their website*). Odd again…
Now the only other name I did find was Marla Golden, DO, MS. I am not aware of official medical titles in the US, but I see no MD. Is “DO” an official certified medical title one could get from respect universities like Harvard or Yale? It appears see is a “Holistic Osteopath” and that could be anything in my book so I could use some help here.
What I don’t need help with is their location:
Michael H. Moskowitz is located at San Rafael, CA 94903
That’s California; looked it up.
Marla Golden is located at:
784 Blanding Blvd Ste 108, Orange Park, Florida 32065
That’s Florida, even to google maps ;-).
My guess is that she isn’t daily present at the clinic in the bay area. That makes quotes like “It is, as Michael Moskowitz, director of the clinic” (from this blog) sound a little bit less impressive. It seems he is director of his one man pain clinic. In our country we call that a private practice. And one man private practices don’t have directors nor boards over here. And it certainly doesn’t require two directors (neuroplastix.com/styled-4/aboutus.html)!
Now Marla Golden has a tad less impressive resume but still
” She is a diplomate of both the American Board of Emergency Medicine and the American Board of Pain Medicine.”
“Dr. Golden is a Clinical Assistant Professor of Emergency Medicine and Regional Assistant Dean, Philadelphia College of Osteopathic Medicine, Georgia Campus. Dr. Golden has served as the Chair of the Credentials Committee of the American Board of Pain Medicine, as a member of the Credentials Committee and the Examination Council of the American Board of Pain Medicine. She has served on the Annual Meeting Planning Committee of the American Academy of Pain Medicine. She has been active in Florida as a spokesperson for the Florida Academy of Pain Medicine. She served on the Board of Directors and as the Legislative Chair and Public Relations Chair of the Florida Academy of Pain Medicine. She lectures nationally on the Connective Tissue System and Neuroplastic Transformation.” sounds impressive too.
Tried to have a single research publication for “marla golden” in google scholar and failed. Now how goes that for having such important functions including being a sort of professor in a university??????
Last one for the day: location:
“1050 Northgate Drive
Suite 410
San Rafael, CA 94903”
Does the “Suite 410” point to a single room in the building or not?
Using Google Maps, he seems to be located in a big building, also locating “JB&A Distribution” according to the tags:
“JB&A is a Value-Added Distributor of audiovisual hardware, software, solutions & trainings. We’re experts in Video, Broadcast, Production & ProAV.”
Also located in the same building is “First 5 Marin” according to the second tag I see: “First 5 Marin is dedicated to supporting the school readiness of all children in Marin—through access to quality early learning opportunities, support for children with social/emotional and other special needs, and by working to ensure that schools are prepared to receive all children.”
Not my idea of how a big successful pain clinic looks like but things may be different in the US.
=> Am I overly critical or do I have fine tuned intuition (sensing a lot of marketing tricks to let appear the whole thing a *lot* bigger and more important then it is)? Can someone please help me figger this out? Don’t want to break down someone with mere google and duckduckgo searches, but I do find it difficult to see things match up to how things are pitched.
dejurgen
I certainly understand the desire to see a rich research record but consider that you may be trying to make a busy doctor into a researcher. Moskowitz’s high profile came from Norman Doidge’s decision to write about him.
Remember Einstein? The patent clerk? While I agree that academic credential are important – and always point them out when I can – but sometimes valuable things can come from outside the established realm.It’s possible Moskowitz came up with something which works.
I would be shocked Moskowitz reached out to Doidge and snookered him into believing fluff; i.e. he used Doidge as a marketing tool. The only book Moskowitz has written on this subject appears to be a rather dry handbook.
The best way to determining the validity of Moskowitz’s approach may be by critically examining his thesis: that visualizing the pain control centers of the brain can help reduce pain.I intend to look further into neuroplasticity. It’ll be interesting to see what I find. If its indeed true that the brain can be programmed to ignore pain signal who knows what is possible?
“that visualizing the pain control centers of the brain can help reduce pain”
I believe this is a valid method of reducing pain. Visualization techniques have been used for over 50 years to alter pain, anxiety and depression. These three syndromes are part of many debilitating conditions from phobias through to suicidal thoughts.
What is visualized is a personal matter. When his method was used in the 60s-80s (when I was a clinician) it was thought that what you visualized was important but it turned out to be idiosyncratic and technically, within reason, you could visualize anything that mattered to you. (I don’t remember anybody visualizing horror or fearful images).
Why does visualization work? I think for several reasons:
1. The “interrupt” as used in Gupta’s program and others.
2. Attentional shift, Melzack and Walls showed us that an attention shift was similar to the “gate” in pain regulation. It is used often with children. It is especially useful if you are “dying to go to the toilet” (especially if you have FM and a hypersensitive bladder sphincter). Using a good attentional shift you can forget about the bladder and go to the toilet an hour later. (how did that happen? because the sphincter sensitivity is partly under attentional control and the pain is due to a signal not being effectivey modulated).
3. Preoccupation. here the imaging is “a job” to be done. Going through the process of visualizing requires energy and work-done. Energy is “triaged”.
4. Relaxation. Once the visualization has been repeated enough it is “habitual” and habitual activities are more relaxing than origination. Here it is helpful to have visualizations which are relaxing or calming.
5. Meditation. Visualizations are meditations (ala buddhism). Mediation is a well know, tested process for reducing pain. (I use it all the time).
Interestingly I have a colleague who is researching the use of LSD for depression and for alcoholism some of his early findings are that only one or two treatments are needed to make a significant difference, far greater in effect than eg. duloxetine. Such a sudden change in mental activity is profound. I doubt it is related to the experiential “trip” but has underlying effects on inflammation (My hypothesis). With this treatment there is no re-wiring but a significant shift in chemistry. We have much to learn.
DO is equivalent to MD in US. Different approach, similar rigorous training. DO’s are gaining increasing respect for what they’ve always done. As in any profession, there are good ones and not so good ones. I’ve been exposed to both. But for e.g., NYU Hospital has a young DO (she’s excellent) who recently moved from their critical care/pulmonology department to their lung transplant department.
A DO helped me heal from a double cervical herniation when no one else could.
That’s not to say that your comment might not have merit. But I do think it is incorrect to paint all DO’s as questionable. I’ve been the very grateful recipient of some outstanding care by DO’s. And, all covered by Medicare, to go to your question of their legitimacy.
A PS to deJurgen: DO stands for Doctor of Osteopathy. I don’t know what the MS after Dr. Golden’s name was; possible an MS in public health, or in social work. Just guessing.
Dejurgen, a further PS, after rereading your post : “One man clinics” are quite common in the US, and considered perfectly legitimate. The organization of medical care in the US is completely different from what one would expect in Europe. One of the most respected ME/CFS doctors in the US (who also is a researcher) is Susan Levine, MD, whose one woman practice in NYC is called a clinic. That’s quite common.
I just posted today an article based on Norman DOIDGE book about how neuroplasticity can help cure chronic diseases
It’s in French but with Google translate it’s easy to translate
https://lafabriqueaglie.wordpress.com/…/soigner…/
Thanks!
Hi Cort- Non stop cold symptoms? Are you sure it’s not an allergy? Food, mold, inhalant? They all can have cold-like symptoms. I get bronchitis now from cows milk and chicken eggs make my nose run a steady stream! Also for anyone with flu-like symptoms that come and go be aware of the possibility of a tick born disease (including viruses). Wishing you well!
Thanks! My diet is very clear but it could be that I’ve developed an allergy to pollen as this has been a tremendous pollen season in the West. I’m about to explore than angle. Thanks for the reminder 🙂
I thought you had known hay fever and treated it Cort.
I have a longtime weakness against the common cold. From September to February I used to have half of the time really bad cold. About 15+ years ago my doctor prescribed some vaccination like pills that prevents most of them and I was in the lucky 1/3th where they work very well. Note that all kind of vaccination is debated among some ME patients.
Last year cold season extended to about the entire year. I started to suspect hay fever but dismissed the idea as I had never been allergic to anything before and I had to cough too. This year I had the same but a bit worse. Then I saw on the weather channel a report that hay fever occurrence is rising the last few years a lot. Over 40% of people are now supposed to have it and it is rising fast. Climate warming was blamed.
Whatever the cause, I learned that many people who were not allergic before became so. And the weather woman told it clears up after some good rain. A few days later, it rained and my nose was less stuffed. I had experienced that a few times before. A common cold should go the other way. Then I had still the cough question. Hay fever doesn’t cause that. After searching I learned that stomach acid reflux could be the culprit here. While I considered it not really bad, I learned I often had to cough after some minor stomach acid reflux. It looks like the stomach acid isn’t the cause by itself, but the “grainy” debris drenched in stomach acid flowing back to my lungs. That causes lung inflammation and irritation hence the cough.
Lately I had a bit more stomach acid reflux then before. After doing some research I did find a possible cause for both problems increasing. Many ME patients have a drop in IgG values. And that links to:
Also mast cell activation is linked to it en.wikipedia.org/wiki/Immunoglobulin_G:
“IgG are also involved in the regulation of allergic reactions… …antigens can cause systemic anaphylaxis in mice through classic pathway by cross-linking IgE bound to the mast cell receptor FcεRI, stimulating the release of both histamine and platelet activating factor (PAF)… …IgG antibodies can prevent IgE mediated anaphylaxis by intercepting a specific antigen before it binds to mast cell–associated IgE.”
So a drop in IgG without a similar drop in IgE values can cause mast cell degranulation increasing susceptibility to all kinds of allergies, maybe chemical sensitivities and mast cell related acid reflux problems.
I opted for a mild local anti-inflammatory spray over taking mast cell stabilizers as the latter can have either very good or quite bad results with ME patients I heard. The stuffed nose was largely solved in less then a week. The cough took some measures to reduce acid reflux and is a bit more difficult to tackle so I settle with a reduction for now.
I began the journey of trying to conquer my pain of M.E. with holistic, nutritional, acupuncture, CBT, GET. Progressively, I got worse, and while I certainly believe in biofeedback, mindfullness, pacing, etc., ny spine continued to degenerate as well as my brain entered a new neurological stage, seizures, and memory loss. As a social worker, and a writer, Ive kept extensive diaries. My doctors like to blame my pain on depression, but my clinical notes say otherwise; as my pain worsened and traveled my cervical to lumbar radiculopathy, my depression increased. Im no longer able to teach my brain new things, from learning new musical instrument to ceramics. My short term memory barely exists.
Now, from spending thousands of non-reimbursable dollars, Im facing poverty. I understand doctors need to make a living, but it offends me when someone who may have discovered a miracle relief for this population, it is a marketable product, $48, which is not scientifically proven. Along with the other “CFS” miracle cure vitamin supplements at costs of hundreds of dollars to people who have lost their incomes. Sorry, Im cynical and skeptical. You wouldn’t offer this theory to a person with diabetes or heart disease…
It’s certainly all right to be cynical and skeptical and I’m sorry you’re in such bad shape!
Moskowitz’s practice, it should be noted, is not designed to be used for people with diabetes or heart disease – it’s aimed at people in pain. I don’t know if it would work for you but please note that Jan was probably in similar place, she was in terrible pain and suicidal, she had tried everything she could think and I would bet was having massive cognitive problems given how much pain she was in.
Maybe,as crazy as it sounds, it’s worth a shot?
Hi, do you know there is a group of people who have symptoms called corneal neuralgia. They have severe pain in their eyes. So, even they don’t have vision problems, they cannot use their eyes because of severe eye pain. Most of them have to apply disabled because they cannot work or study. Are there some ways to help these people?
Thank you.
I’ll be interested to hear your experience DNRS Cort. I’ve actually had the program for a few years but didn’t want to start before I could get a full differential diagnosis for other possible conditions. (which has been surprisingly challenging). I sincerely believe these techniques can help some CFS patients, but if you have a different undiagnosed illness committing to something like this seems like a form of self torture. If you look at the history of CFS, you can see a long line of these mental approaches being touted as potentially helpful against things that we now know unquestionably are not going to be improved by psychosomatic modalities. Similarly the history of medicine is littered with people who were discovered to have a treatable illness after decades of psychiatric abuse and just like conventional psychiatry these approaches have tremendous potential to help, except when they don’t. I’m more of a mind-body guy myself, but I gotta admit that I didn’t cure my devastating sleep issues with 5 years of visualizations (which I did). I did it with 1/4lb of protein at midnight. So I have to ask where I would be right now if I had doubled down and really committed to DNRS? Would it have fixed my rebound hyperglycemia? Is there a shred of evidence that any mind body approach can reverse small fiber neuropathy? Maybe it can, (seriously, anything is possible) but you see why I’m skeptical.
I don’t know about self-torture. The goal of the DNRS program is to turn limbic system functioning and pain and sensory processing systems back to normal. If it works it takes time and work but other than that the program is not difficult or torturous! At worst it could be a waste of time and energy.
Asking or suggesting that a program like this or any program for that matter cure everything – from rebound hypoglycemia to HIV/AIDS (as another commenter suggested) is I think asking too much.
It’s clear from the many stories that the program can help people with horrific chemical sensitivities, hypersenitivity to electrical signals and probably some people with diseases like ME/CFS and FM – diseases, in order words, which probably involve central sensitization – and problems with sensory processing which causes the limbic system to overreact producing symptoms like pain and fatigue as a mechanism.
Since the program is aimed at reducing the stress response which is clearly upregulated in my case I would be very happy if it impacts that! That alone would well worth the time and money put into it.
In any case why burden the DNRS with having to do things that we don’t expect other treatments to do? No one expects drugs or compression stockings to cure POTS, or CoQ10 or D-Ribose to cure the energy problems in ME/CFS. We don’t even expect a doctor with their complete protocols to cure either ME/cFS or FM. So lets not burden the DNRS with that.
With regard to small fiber neuropathy if Moskowitz’s program could remove the pain from a crippled back I assume it has the potential to be helpful with SFN Plus nature works in strange ways – SNF could be caused by problems in the brain – https://www.ncbi.nlm.nih.gov/pubmed/29392206
Cort,
Thank you for your comments here. I so appreciate your level-headed, realistic assessment of these approaches. I am about to order the 14 day DVD from DNRS. I’ve spend the last couple of years putting all my energy and then some into supporting my daughter who has struggled for survival with a congenital condition that very few neurosurgeons seem to understand. Her second surgery was in December from an expert who, finally, I really believe understands her condition and did the correct surgery to address it.
That said, these years have had me in a state of chronic adrenalized overload, and I’ve described myself as being in a state where someone threw a heavy block of concrete on my stress response accelerator. Prior to that, I’d began to see some hope for my CFS and Fibro through careful pacing and monitoring of my exertion level, through treatment with Metformin and B12, and a couple of other things.
I was in better shape going into this period of stress. But I think that the only reason I’ve been able to be there for my daughter in these last two years and somehow found the strength to appear capable intermittently is that the maternal access to the stress hormones has kept me charged up.
Now she’s doing better–not out of the woods, but doing better–and I am letting down a bit and PEM and other symptoms are shaking their fingers at me and telling me I shouldn’t have expected I’d get away with pushing this long.
It’s not like the concepts in Annie Hopper’s book are new to me. I’ve spent most of my life as “sensitive,” and “difficult” person and “the princess and the pea,” especially over the last 28 years as the battles with Fibromyalgia, CFS, IBS, and other issues have settled in. And this isn’t the first time I’ve been attracted to the discoveries regarding neuroplasticity and a “reptilian brain” stuck in the on position, and thought this sounds like me.
So I think you are absolutely right. Treatment is never a one-size fits all proposition. And maybe there are many in the CFS community who don’t fit with this treatment. But it sounds like it has my name on it (I read the book) and maybe yours, and I’m very happy that you referenced the program in this blog. I’m ordering the 14 day DVDs tomorrow and will look forward to hearing more from you about your progress on HR.
Take care, Cort, and thank you as ever for Health Rising.
Thanks NJ and good luck with program! Please let us know how it goes.
I have ME/CFS did DNRS for 3 months for my mold hypersensitivity symptoms subsequent to starting mold avoidance (my story is briefly depicted in Unrest). It significantly improved my brain fog, fatigue and to some degree, my detoxification. I have heard of quite a number of cases of CFS and chronic Lyme being completely cured by it so I believe it’s certainly possible though different people may have varying mileage. I went hardcore on the mind-body route for a while with no other medical treatment and my physical function did improve a fair amount during that time but oddly my cognition did not. I also hit walls and backslid at various points. Poor mental health and handling of stressors can make it harder to do brain retraining.
It’s very clear to me right now that mind and body have profound effects on this illness. I honestly think of CFS as a dramatic illustration of the huge interrelationship of the body and “mind”, mental and physiologial, emotional and physical, however you want to put it. Obviously it also as real as any other major illness and deserves great research, social support and medical research oriented toward treatment. At this point, I take both integrative medical treatment and mind body work as important parts of my treatment.
I think Dan Neuffer’s program probably offers the best synthesis of these approaches as far as I can tell, however I’ve never purchased it.
This is an excellent article that explains some of the concepts Dr. Golden and I developed using Neuroplasticty to treat pain. Doidge stresses the visualization technique, but we have moved well beyond that, as described in our workbook Neuroplastic Transformation. Between the book and the Neuroplastix.com workbook section of our website we have hundreds of approaches to try to invoke Neuroplastic change in pain processing. This approach has been used successfully all over the world. Dr Golden and I are currently wrapping up a Webinar series that will be available on recording shortly on our website. This approach can help with all pain disorders. By the way Fibromyalgia is a quintessential disorder of neuroplasticity gone wrong. That does not mean that there is not a peripheral component of this. Neuroplasticity and somatoplaticity are one thing. This is mediated via an organ that almost no one knows they have, known as ECM (the Extracellular Matrix) and the Peripheral and Central Nervous System. This gives constant communication and adjustment to brain and body 24 hours a day. Also, regardless of whether pain is generated centrally or peripherally, it is all real pain and we can always make it better or worse. I have recently created a graphic of this interaction with a step by step approach to neuroplastic and somatoplastic interventions. I would be happy to supply it to this website, if you would like to see if you think it would be useful to this forum. I certainly would like to thank Cort and the rest of the commentators for their thoughtful discussion and distribution of our program.
Thank you so much Dr. Moskowitz for chiming in! It’s ALWAYS heartening when a doctor or researcher takes the time to contribute 🙂
Thanks as well for letting us know of the many different ways to use neuroplasticity to reduce pain. I look forward to watching the webinar series and checking out the workbook and investigating the website more (and the extracellular matrix!) 🙂
How can I contact you for help and consultation?
Dr. Moskowitz did not write this blog but you should be able to find him by looking him up on the internet. If you don’t succeed with him other brain retraining techniques are available. Good luck!
I did DNRS and it works! Yes it’s not an easy fix but what a miracle.
wooow can you explain what did you do?
I have applied visualization, remembering happy moment of my life, imagine the best future for me but i’m stil ill…
what is wrong with me?
I am happy to see this post here, Cort. I see that it is old now. I stopped reading this site in 2019 when I started DNRS. I AM HAPPY TO SAY THAT I HAVE HEALED MECFS, FIBRO, MCS, POTS and so much more. I started with DNRS, went all in and was back on my feet within 6months. However the process of deep healing of my nervous system was a much longer journey. Because as soon as I got my body out of the chronic freeze/collapse state- old trauma began to come up to be healed. So from DNRS I moved into learning poly vagal theory and more somatic based trauma work. My life now is better than it ever was before I got sick and did this work. Thanks for Sharing the hope here.
I am in Australia and need a doctor who is familiar with this approach to pain
A Doctors Map where you can find good practitioners will be up shortly. 🙂