Is neural/limbic retraining (DNRS) a treatment for ME/CFS or not?

[mbunke]

Yes, he says so, but it didn’t work for me and that is the only reason I can think of as most of the techniques in all of these programs are for damping down the sympathetic response.

Oh yes, I forgot, you mentioned this before. I would think it's something else, but maybe you're right. If I remember you said you really did commit to the program right? Do you feel like when you did the exercises, you really believed that the pain/symptoms were false brain reactions, or were you more just saying the words? I noticed a shift a few days ago where it finally clicked for me that the symptoms are false brain messages, and I feel like I dissociated them for the first time and the words I'm saying I actually believe now.

 

[Sushi]

Oh yes, I forgot, you mentioned this before. I would think it's something else, but maybe you're right. If I remember you said you really did commit to the program right? Do you feel like when you did the exercises, you really believed that the pain/symptoms were false brain reactions, or were you more just saying the words? I noticed a shift a few days ago where it finally clicked for me that the symptoms are false brain messages, and I feel like I dissociated them for the first time and the words I'm saying I actually believe now.

Yes, I really committed to the program. I think we may have done different programs as I’m not sure what you mean by “exercises?” Can you tell me more?

 

[mbunke]

Yes, I really committed to the program. I think we may have done different programs as I’m not sure what you mean by “exercises?” Can you tell me more?

Sorry, I meant the rewiring. See, that's the problem with Dan's program I think, he doesn't talk about, explain, or focus on that enough. It gets lost in all this other stuff, and even though he says the rewiring should be "central," he doesn't make it central. In DNRS, the brain exercises, which they call "rounds," are explained very meticulously and the instructions are to do them for at least 1 hour per day for 6 months and then whenever symptoms come up.

Dan basically makes it seem like all you have to do when you feel symptoms is take a deep breath, relax, and try not to worry about it. That's not it. It's two main things: (1) depersonalizing the pain ("This is not the true state of my body, this is just a mistake my brain is making"), and (2) re-conditioning. Re-conditioning means changing your thinking patterns so that every time you think about a symptom, you visualize positive imagery to induce feel-good chemicals in your brain as much as possible. This could be memories or future visualizations, and you can bolster it with sound effects, music, smells, etc. With repetition, your amygdala will stop associating the symptoms with fear/negative emotions (which keeps them alive!) and start associated them with safety and calm. And that will make the amygdala stop inducing the symptoms because it only pays attention to what's dangerous or important. That's what the depersonalization helps with--it relabels the symptom as "no longer important." So the brain, instead of sending off its alarm bells, simply moves past it. Since the symptoms (if they're limbic) need stress to survive, they then eventually die, as long as the exercises are done consistently and repetitively.

Let me know if that didn't make sense. I'd encourage you to check out DNRS or Gupta to see if you like it better! I posted the link to the transcript of the DNRS DVD's somewhere on this thread.

 

[Sushi]

that's the problem with Dan's program I think, he doesn't talk about, explain, or focus on that enough. It gets lost in all this other stuff, and even though he says the rewiring should be "central," he doesn't make it central.

It's two main things: (1) depersonalizing the pain ("This is not the true state of my body, this is just a mistake my brain is making"), and (2) re-conditioning. Re-conditioning means changing your thinking patterns so that every time you think about a symptom, you visualize positive imagery to induce feel-good chemicals in your brain as much as possible. This could be memories or future visualizations, and you can bolster it with sound effects, music, smells, etc. With repetition, your amygdala will stop associating the symptoms with fear/negative emotions (which keeps them alive!) and start associated them with safety and calm.

Thanks for that clear explanation!

And that will make the amygdala stop inducing the symptoms because it only pays attention to what's dangerous or important. That's what the depersonalization helps with--it relabels the symptom as "no longer important." So the brain, instead of sending off its alarm bells, simply moves past it. Since the symptoms (if they're limbic) need stress to survive, they then eventually die, as long as the exercises are done consistently and repetitively.

Makes sense.

Let me know if that didn't make sense. I'd encourage you to check out DNRS or Gupta to see if you like it better! I posted the link to the transcript of the DNRS DVD's somewhere on this thread.

Your explanations are clear--thank you. I did do the Gupta program some years ago but didn't find any help from it. I'd still like to know whether those with an over active sympathetic system do better with these programs than those with over active parasympathetic systems. I'll see if I can self-modify Dan's program to include what you have written above. Thanks again.

 

[mbunke]

Thanks for that clear explanation!
Makes sense.
Your explanations are clear--thank you. I did do the Gupta program some years ago but didn't find any help from it. I'd still like to know whether those with an over active sympathetic system do better with these programs than those with over active parasympathetic systems. I'll see if I can self-modify Dan's program to include what you have written above. Thanks again.

That would be interesting. Did you tell me you got a test done by a doctor that confirmed you're parasympathetic dominant?

 

[Sushi]

Did you tell me you got a test done by a doctor that confirmed you're parasympathetic dominant?

Yes, I had extensive autonomic testing done by an autonomic specialist. I also have a cardiac pattern that indicates an overactive vagus nerve--high vagal tone indicating an overactive parasympathetic system.

 

[mbunke]

For those of you who have asked for research supporting neural retraining, here is a starting list I've been working on. This is only a small fraction of the existing research on neuroplasticity's ability to rewire our brains. There are more conditions I have to add and more reseach to existing conditions listed. There is limited research available for CFS because it's a new approach (within the last couple decades), so of course it will take time, but I've listed most of what I know about it below. However, if you read the studies on other similar conditions, you will find that it's not hard to see how the same principles apply to CFS.

Disclaimer: There are studies listed that use the word "psychosomatic," especially ones by Dr. John Sarno. I do not agree with everything these doctors say about how unhealthy psychological habits can cause illness. I believe these are one more stressor to add to the bucket of stressors that tip us into limbic dysfunction, including virus, mold, heavy metals, etc. Just like in any physiological illness, unhealthy psychology may play a part, but it is not the whole story. Dr. Sarno opened the door again to the idea that stress can cause illness, and although he preferred a stranger, more Freudian analysis, many doctors have taken his original ideas and updated them using the latest research on stress/allostatic load and its ability to alter immune and nervous system function. Other studies will talk about emotions and CBT, etc. Again, I don't believe these are sufficient to explain/heal 90%+ of CFS cases, they are simply a part of the puzzle and the research is listed to show that that's true.

Cheers.



Anxiety
Paquette, Vincent, et al. “‘Change the Mind and You Change the Brain’: Effects of Cognitive-Behavioral Therapy on the Neural Correlates of Spider Phobia.” NeuroImage, vol. 18, no. 2, 2003, pp. 401–409., doi:10.1016/s1053-8119(02)00030-7.


Aphasia
Musso, Mariacristina, et. al., "Training-induced brain plasticity in aphasia." Brain, vol. 122, no. 9, September 1999, pp. 1781–1790, doi:10.1093/brain/122.9.1781

Sarno, J.E. "Emotional Aspects of Aphasia." In Sarno, M.T., Acquired Aphasia. Academic Press, New York, 1981, 465-484.


Brain and Spinal Cord Injury


Chronic Fatigue Syndrome
Brighton & Sussex Medical School and Sussex & Kent ME/CFS Society’s Survey

Crawley, Esther M, et al. “Clinical and Cost-Effectiveness of the Lightning Process in Addition to Specialist Medical Care for Paediatric Chronic Fatigue Syndrome: Randomised Controlled Trial.” Archives of Disease in Childhood, vol. 103, no. 2, 2018, pp. 155–164., doi:10.1136/archdischild-2017-313375.

Crawley, Esther, et al. “The Feasibility and Acceptability of Conducting a Trial of Specialist Medical Care and the Lightning Process in Children with Chronic Fatigue Syndrome: Feasibility Randomized Controlled Trial (SMILE Study).” Trials, vol. 14, no. 1, 2013, p. 415., doi:10.1186/1745-6215-14-415.

Crawley, Esther, et al. “Comparing Specialist Medical Care with Specialist Medical Care plus the Lightning Process® for Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME): Study Protocol for a Randomised Controlled Trial (SMILE Trial).” Trials, vol. 14, no. 1, 2013, p. 444., doi:10.1186/1745-6215-14-444.

Finch, Fiona. (2010). Lightning Process Snapshot Survey of clients' experiences with CFS/ME.

Gupta, Ashok. "Can amygdala retraining techniques improve the wellbeing of patients with chronic fatigue syndrome: A clinical audit of subjective outcomes in a small sample." Journal of Holistic Healthcare, vol. 7 no. 2, 2010.

Gupta, Ashok. "Unconscious amygdalar fear conditioning in a subset of chronic fatigue syndrome patients." Medical hypotheses vol. 59, no. 6, 2002, pp. 727-735. doi:10.1016/S0306-9877(02)00321-3.

Hagelsteen, Johan Henrik, Reiten, Inger Marie Moen. "Evaluering av en behandlingsstrategi." Dagens Medicine, 2015.

Parker, Phil, et al. "Understanding the Lightning Process Approach to CFS/ME; A Review of the Disease Process and the Approach." Journal of Experiential Psychotherapy, vol. 21, no. 2, 2018, pp. 21-28.

Reme, Silje Endresen, et al. “Experiences of Young People Who Have Undergone the Lightning Process to Treat Chronic Fatigue Syndrome/Myalgic Encephalomyelitis - a Qualitative Study.” British Journal of Health Psychology, vol. 18, no. 3, 2012, pp. 508–525., doi:10.1111/j.2044-8287.2012.02093.x.


Depression
Leuchter, Andrew F., et al. “Changes in Brain Function of Depressed Subjects During Treatment With Placebo.” American Journal of Psychiatry, vol. 159, no. 1, 2002, pp. 122–129., doi:10.1176/appi.ajp.159.1.122.

Mayberg, Helen S., et al. “The Functional Neuroanatomy of the Placebo Effect.” American Journal of Psychiatry, vol. 159, no. 5, 2002, pp. 728–737., doi:10.1176/appi.ajp.159.5.728.


Drug & Alcohol Addiction
Parker, P., "Association between impulsivity and flourishing in Substance Use Disorders (SUD): bridging the gap between pathology focused psychology and positive psychology?" European Journal of Applied Positive Psychology, vol. 3, no. 3, 2019, pp. 1-9.

Parker, P., Banbury, S., & Chandler, C., "The utility of measuring flourishing in substance and alcohol use disorders research: a systematic review", European Journal of Applied Positive Psychology, vol. 2, no. 5, 2018, pp. 1-13.


Emotional Regulation
Lévesque, Johanne, et al. “Neural Circuitry Underlying Voluntary Suppression of Sadness.” Biological Psychiatry, vol. 53, no. 6, 2003, pp. 502–510., doi:10.1016/s0006-3223(02)01817-6.

Schwartz, Jeffrey M. “The Volitional Influence of the Mind on the Brain.” Consciousness, Emotional Self-Regulation and the Brain, edited by Mario Beauregard, John Benjamins Pub., 2004, pp. 195-238.


Fibromyalgia
Fors, Egil A, et al. “The Effect of Guided Imagery and Amitriptyline on Daily Fibromyalgia Pain: a Prospective, Randomized, Controlled Trial.” Journal of Psychiatric Research, vol. 36, no. 3, 2002, pp. 179–187., doi:10.1016/s0022-3956(02)00003-1.

Guenter, Dale, et. al. "Neuroplasticity-based Treatment for Fibromyalgia, Chronic Fatigue, and Multiple Chemical Sensitivity: Feasibility and Outcomes." 2019.


Gastroenterology
Drossman, Douglas A., et al. “Alterations of Brain Activity Associated with Resolution of Emotional Distress and Pain in a Case of Severe Irritable Bowel Syndrome.” Gastroenterology, vol. 124, no. 3, Mar. 2003, pp. 754–761., doi:10.1053/gast.2003.50103.


General Neuroplasticity
Bach-y-Rita, P. "Plastic brain mechanisms in sensory substitution." Cerebral Localization, Springer, Berlin, Heidelberg, 1975, pp. 203-216.

Beauregard, Mario, et al. “Neural Correlates of Conscious Self-Regulation of Emotion.” The Journal of Neuroscience, vol. 21, no. 18, 2001, doi:10.1523/jneurosci.21-18-j0001.2001.

Cramer, Steven C., "Harnessing neuroplasticity for clinical applications." Brain, vol. 134, no. 6, June 2011, pp. 1591–1609, doi:10.1093/brain/awr039.

Department of Neurophysiology, Nencki Institute of Experimental Biology. "Jerzy Konorski on Brain Associations." Act Neurobiologiae Experimentalis, vol 66, pp. 75-90, 2006.

Hebb, Donald O. The Organization of Behavior: A Neuropsychological Theory. Lawrence Erlbaum Associates, Publishers, 1949.

Kolb, Bryan, and Robbin Gibb. “Brain plasticity and behaviour in the developing brain.” Journal of the Canadian Academy of Child and Adolescent Psychiatry = Journal de l'Academie canadienne de psychiatrie de l'enfant et de l'adolescent vol. 20,4 (2011): 265-76.

Krech, David, Mark R. Rosenzweig, and Edward L. Bennett. "Effects of environmental complexity and training on brain chemistry." Journal of comparative and physiological psychology vol. 53, no. 6, 1960, pp. 509.

Ochsner, Kevin N., et al. “Rethinking Feelings: An FMRI Study of the Cognitive Regulation of Emotion.” Journal of Cognitive Neuroscience, vol. 14, no. 8, 2002, pp. 1215–1229., doi:10.1162/089892902760807212.

Philip DeFina, Jonathan Fellus, Mary Zemyan Polito, James W. G. Thompson Ph.D., Rosemarie Scolaro Moser & John DeLuca (2009) The new neuroscience frontier: Promoting neuroplasticity and brain repair in Traumatic Brain Injury, The Clinical Neuropsychologist, vol. 23, no. 8, pp. 1391-1399, DOI: 10.1080/13854040903058978

Schwartz J.M. & Begley S., The Mind and the Brain: Neuroplasticity and the Power of Mental Force. 2002 New York: Harper Collins.

Springer, S. P., and G. Deutsch. "A series of books in psychology. Left brain, right brain: Perspectives from cognitive neuroscience . New York, NY, US." (1998).

Young, James A, and Margarita Tolentino. “Neuroplasticity and Its Applications for Rehabilitation.” American Journal of Therapeutics, vol. 18, no. 1, 2011, pp. 70–80., doi:10.1097/mjt.0b013e3181e0f1a4.


Obsessive-Compulsive Disorder
Schwartz JM, Stoessel PW, Baxter LR, Martin KM, Phelps ME. "Systematic Changes in Cerebral Glucose Metabolic Rate After Successful Behavior Modification Treatment of Obsessive-Compulsive Disorder." Arch Gen Psychiatry. 1996; vol. 53 no.2, pp. 109–113. doi:10.1001/archpsyc.1996.01830020023004


Pain
Beecher, Henry K. “Pain in Men Wounded in Battle.” Anesthesia & Analgesia, vol. 26, no. 1, Jan. 1947, p. 21., doi:10.1213/00000539-194701000-00005.

Beecher, Henry K. "The Measurement of Pain." Pharmacological Reviews, vol. 9, no. 1, March 1, 1957, 59-209.

Beecher, Henry K. "Relationship of Significance of Wound to Pain Experienced." JAMA. 1956;161(17):1609–1613. doi:10.1001/jama.1956.02970170005002.

Bigos, Stanley J., et al. “A Prospective Study of Work Perceptions and Psychosocial Factors Affecting the Report of Back Injury.” Spine, vol. 16, no. 1, 1991, pp. 1–6., doi:10.1097/00007632-199101000-00001.

Harkness, E. F., et al. “Is Musculoskeletal Pain More Common Now than 40 Years Ago?: Two Population-Based Cross-Sectional Studies.” Rheumatology, vol. 44, no. 7, 2005, pp. 890–895., doi:10.1093/rheumatology/keh599.

Melzack, Ronald, and Patrick D. Wall. “Pain Mechanisms: A New Theory.” Pain Forum, vol. 5, no. 1, 19 Nov. 1996, pp. 3–11., doi:10.1016/s1082-3174(96)80062-6.

Mendell, Lorne M. “Constructing and Deconstructing the Gate Theory of Pain.” Pain, vol. 155, no. 2, Feb. 2014, pp. 210–216., doi:10.1016/j.pain.2013.12.010.

Price, Donald D., et al. “Plasticity in Brain Processing and Modulation of Pain.” Progress in Brain Research Reprogramming of the Brain, 2006, pp. 333–405., doi:10.1016/s0079-6123(06)57020-7.

Rashbaum, Ira G., and John E. Sarno. “Psychosomatic Concepts in Chronic Pain.” Archives of Physical Medicine and Rehabilitation, vol. 84, Mar. 2003, doi:10.1053/apmr.2003.50144.

Sarno, J. E. “Chronic Back Pain and Psychic Conflict.” Pain, vol. 6, no. 1, Feb. 1979, pp. 112–113., doi:10.1016/0304-3959(79)90164-7.

Sarno, John E. “Etiology of Neck and Back Pain.” The Journal of Nervous and Mental Disease, vol. 169, no. 1, 1981, pp. 55–59., doi:10.1097/00005053-198101000-00008.

Sarno, John E. “Etiology of Neck and Back Pain.” The Journal of Nervous and Mental Disease, vol. 169, no. 1, 1981, pp. 55–59., doi:10.1097/00005053-198101000-00008.

Savage, RA, et al. “The Relationship between the Magnetic Resonance Imaging Appearance of the Lumbar Spine and Low Back Pain, Age and Occupation in Males.” European Spine Journal, vol. 6, no. 2, 1997, pp. 106–114., doi:10.1007/bf01358742.

Stanley J. Coen and John E. Sarno (1989). Psychosomatic Avoidance of Conflict in Back Pain. Journal of the American Academy of Psychoanalysis: Vol. 17, No. 3, pp. 359-376.


Stroke & Traumatic Brain Injury
Dams-Oconnor, Kristen, et al. “Poster 27: Feasibility of a Computerized Cognitive Skill-Building Program in an Inpatient Traumatic Brain Injury Rehabilitation Setting.” Archives of Physical Medicine and Rehabilitation, vol. 90, no. 10, 2009, doi:10.1016/j.apmr.2009.08.057.

Levin, Harvey S., and Jordan Grafman, eds. Cerebral reorganization of function after brain damage. Oxford University Press, 2000.

Sawaki, Lumy, et al. “Constraint-Induced Movement Therapy Results in Increased Motor Map Area in Subjects 3 to 9 Months After Stroke.” Neurorehabilitation and Neural Repair, vol. 22, no. 5, 2008, pp. 505–513., doi:10.1177/1545968308317531.

Taub, Edward, and Steven L. Wolf. “Constraint Induced Movement Techniques To Facilitate Upper Extremity Use in Stroke Patients.” Topics in Stroke Rehabilitation, vol. 3, no. 4, 1997, pp. 38–61., doi:10.1080/10749357.1997.11754128.


Tinnitus & Auditory Deficits
Cheng, Yuan, et al. “Reversal of Age-Related Changes in Cortical Sound-Azimuth Selectivity with Training.” Cerebral Cortex, 3 Sept. 2019, doi:10.1093/cercor/bhz201.

Jastreboff, Pawel J., and Margaret M. Jastreboff. “Tinnitus Retraining Therapy: A Different View on Tinnitus.” Orl, vol. 68, no. 1, 2006, pp. 23–30., doi:10.1159/000090487.

Jastreboff, Pawel J. et. al., "Neurophysiological model of tinnitus: Dependence of the minimal masking level on treatment outcome." Hearing Research, vol. 80, no. 2, 1994, pp. 216-232, doi:10.1016/0378-5955(94)90113-9.

Jastreboff, Pawel J., and Jonathan W. P. Hazell. “Tinnitus Retraining Therapy: Implementing the Neurophysiological Model.” 2004, doi:10.1017/cbo9780511544989.


Vision Loss, Blindness
Bach-y-Rita, Paul, et al. "Vision substitution by tactile image projection." Nature vol. 221, no. 5184, 1969, pp. 963-964.

Bach-y-Rita, Paul. "Sensory plasticity: Applications to a vision substitution system." Acta Neurologica Scandinavica, vol. 43, no. 4, 1967, pp. 417-426.


Additional Research
Finch, Fiona. "Lightning Process - Outcome measures study." 2013, doi:10.13140/RG.2.2.29818.24002.

Finch, Fiona. "Lightning Process Snapshot Survey of clients' experiences." 2010, doi:10.13140/RG.2.2.23107.35366.

 

[Pendergast]

Thank you @mbunke !
How are you doing with the DNRS? Are you still noticing some improvements? (even if those are small?)

I started reading the DNRS transcription but it will take me some time because it's large.. I hope it will be more useful than Gupta, which I also read and I think the main technique was a little bit simplistic. I really don't understand how can the Gupta be so expensive for such a poor "revelation"

I'm also practicing meditation, based on the work of Dr. Joe Dispenza. I have practiced it before but inconsistently. Now I'm trying to do it on a daily basis.

No improvement so far but I'm gaining skill. At the beginning I only was able to stay 5 minutes in the "mindfulness state" and now I reach sometimes 30-40 minutes.

Even if I don't notice any health improvement yet, I'm aware of the huge "thinking noise" and anxiety I have, which is there all the day and I think we are only conscious when trying to meditate.

Maybe that noise is consuming a lot of energy and is part of the "wired but tired" problem.

So I will keep on with the meditation and try to complement it with the DNRS.

I'm still skeptical about the idea of chronic activation of the ANS (symphatic vs parasymphatic) being the cause of the problem instead of one consequence more.

But as the cause is unknown, we only can act on the consequences and see what happens...

A big hug!

 

[Timaca]

For those of you who have asked for research supporting neural retraining, here is a starting list I've been working on.

That is quite an extensive list! Thanks for sharing!

A pharmacist recommended this book. Amazon also suggested this book. They both seem to talk about brain retraining. Are you familiar with either book?

 

[xebex]

@Timaca i read the divided mind by Doctor Sarno, similar info. I use techniques he pioneered to significantly reduce my back pain that i believe is caused by a slightly squashed disc and lack of oxygen in the muscles around it. I have not been able to completely rid the pain BUT it has been a huge help.

 

[Aerose91]

interesting yes i have vague histamine like issues and vasodilation issues, i was taking it for the vasoconstriction it induces.

could you provide a source about it being a mast cell stabilizer, i can't find anything? thanks

This is work of Dr Mozayeni in Bethesda, MD. He had me on it for that reason. I'm sure he has some literature published for it somewhere, I'm just not aware of where

 

[xebex]

@Aerose91 thanks for this info! I’ll have a google

 

[Judee]

That's an lot of research material you have, @mbunke. Are you writing your college thesis on ME/CFS?

One thought: I've heard that Esther Crawley isn't well spoken of in the ME/CFS community at Science for ME? I'm not sure of the others though. You could ask @Countrygirl about her as well.

 

[Wayne]

I just got done watching the first episode of this series, and thought it was very well done (unlike other similar kind of videos I've tried to watch in the past). I'll post a little more tomorrow on what's in it, but I wanted to get the link up tonight, so that anybody interested can watch it before it expires tomorrow.

The first episode was just less than an hour. This might be of interest to anybody who has an interest in DNRS, but with a larger number of topics, it feels a little more far-reaching. The ability to watch the first episodes ends tomorrow at 4:00 Pacific Time.

From Chronic Fight or Flight to -- "Radical Remission" - 10-Part Online Series

 

[mbunke]

@Pendergast Hello! I'm still inching along. I recently went off a med and went on a new med which threw my system off a bit and felt like it set me back. Also the stress of Corona is likely a factor! If anyone is experiencing flare-ups, that's totally normal, considering the craziness happening right now! Just means upping self-care and being extra mindful right now. Here are some excellent free resources btw: https://www.curablehealth.com/covid-19

Your progress with meditation is amazing! I still can't keep that kind of focus. I try to do 15 per day. Is there a link you could send for the meditations you're doing? And I haven't done the Gupta program, you said you found a transcript of that somewhere too? I'd love to read it if so! I'm glad you've found resources and you're sticking with it, these things take soooo much discipline. I really like ANS Rewire, not for the rewiring techniques as much, but because he talks about all the other things you might need to supplement the rewiring. For me, I'm finding those things will definitely be necessary. So for people that find the rewiring alone doesn't work, just know that sometimes it requires extra help!

@Timaca Thanks for sharing those books! I haven't heard of the first, although Howard Schubiner is one of the leading providers in the Mindbody world. He leans heavily on Dr. John Sarno's work (second book), which I've read. I recommend his book The Mindbody Prescription, however--He uses a very Freudian explanation that I don't agree with. His theory is that when we have rage that we can't/don't express because it's socially unacceptable, our brain creates physical symptoms to distract us from that rage. The cure is simply to understand this because once you're aware of the rage, the brain's "trick" no longer works and it stops creating the physical pain. This is silly to me. The problem is much simpler: too much stress causes CNS dysfunction. But I still like Sarno's work because if you read it with that critique in mind, almost everything else is very helpful, and repressed anger (and any repressed emotion) is proven to create significant stress! It's just not the whole story.

And I'll give the Schubiner book a read, thanks for suggesting!

@Judee I am not doing a thesis on this, but they better give me an honorary doctorate by the time I'm done Just a nerdy person with CFS and lots of time on her hands. Thanks for the tip on Esther Crawley! I didn't know that. I've tried to stay away from the politics in the CFS community because I find it to be a huge downer, but I completely understand why people get angry at certain doctors/researchers. I'm not a fan of the "just use CBT and graded exercise" approach of course. I do think every one of us could benefit from CBT hugely, but I don't think it will be a cure for 95%+ of us. I like Dan Neuffer's explanation of how to use exercise in ANS Rewire. He really unpacks the problem with GET and explains how to actually use exercise to your advantage.

It's good to know that about her because I plan to put all this together into a website/Youtube channel, and I'd like to put disclaimers for sharing resources that might be controversial. I don't want to give people the impression I'm a fan of the GET approach, but that doesn't mean she hasn't done compelling work elsewhere, and people might look away immediately if they think it smells like GET.

@Wayne Thanks for sharing! It looks like it's on the 4th episode now, I will give it a watch!

Stay safe everyone! We're like the superheroes of the world right now, we need to teach everyone else how to keep yourself occupied when you can't leave your house!

 

[Pendergast]

Your progress with meditation is amazing! I still can't keep that kind of focus. I try to do 15 per day. Is there a link you could send for the meditations you're doing? And I haven't done the Gupta program, you said you found a transcript of that somewhere too? I'd love to read it if so! I'm glad you've found resources and you're sticking with it

Hi Mbunke!
I have just finished a 50 min meditation! This is my record I think.

And just when I took the silence off the mobile, here it was your message. (Synchronicity? )

I set up my meditation method based on two very basic videos (which are in Spanish) and the books I read from Dr. Joe Dispenza.

Well, in fact, I only read one book. The other two were free audiobooks to listen in Ivoox.

I don't know if those will be in English. Maybe you can try and find it out. The books I listened to/read were:

- You are the placebo (maybe the most interesting one).
- Breaking the habit of being yourself
(The one which better description has on how to meditate).
- Becoming Supernatural (Here the man I think gets a little bit crazy).

But in general I didn't found the books very interesting from the point of view of how to meditate.

There are some guided meditations for buy on his website but I havn't bought any.

I only found this one on YouTube, which is in English and I can't use it but you will!

And here is one of his conferences, just in case you want to hear him. (I have heard a lot of stuff from him and basically he always says the same, so it's no neccesary to hear more than this one) :

About Gupta's, I have a Pdf file with the main stuff but it's in Spanish so I don't know if you still want it.

If you do, send me a PM and I will give it to you.

A big hug (without Coronavirus )

 

[panckage]

@mbunke Ester Crawley's "research" had CFS patients considered cured even though the scores got worse in the study. That is just the tip of the iceberg. No placebo, no blinding, patients choosing their own trial arm. Conflicts of interest that weren't revealed (study member a consultant for an insurance company). The results of the study were used to deny CFS patients disability. Crawley still maintains the study was fine and her daughter used it to cure herself of CFS

Its the PACE trial the absolute worst piece of $&#@ and most harmful study in the history of ME... You might want to look into a little

Edit: Crawley was only indirectly involved with the PACE trial. My mistake. Similar issues with her research methods though

 

[frozenborderline]

For those of you who have asked for research supporting neural retraining, here is a starting list I've been working on. This is only a small fraction of the existing research on neuroplasticity's ability to rewire our brains. There are more conditions I have to add and more reseach to existing conditions listed. There is limited research available for CFS because it's a new approach (within the last couple decades), so of course it will take time, but I've listed most of what I know about it below. However, if you read the studies on other similar conditions, you will find that it's not hard to see how the same principles apply to CFS.

Disclaimer: There are studies listed that use the word "psychosomatic," especially ones by Dr. John Sarno. I do not agree with everything these doctors say about how unhealthy psychological habits can cause illness. I believe these are one more stressor to add to the bucket of stressors that tip us into limbic dysfunction, including virus, mold, heavy metals, etc. Just like in any physiological illness, unhealthy psychology may play a part, but it is not the whole story. Dr. Sarno opened the door again to the idea that stress can cause illness, and although he preferred a stranger, more Freudian analysis, many doctors have taken his original ideas and updated them using the latest research on stress/allostatic load and its ability to alter immune and nervous system function. Other studies will talk about emotions and CBT, etc. Again, I don't believe these are sufficient to explain/heal 90%+ of CFS cases, they are simply a part of the puzzle and the research is listed to show that that's true.

Cheers.



Anxiety
Paquette, Vincent, et al. “‘Change the Mind and You Change the Brain’: Effects of Cognitive-Behavioral Therapy on the Neural Correlates of Spider Phobia.” NeuroImage, vol. 18, no. 2, 2003, pp. 401–409., doi:10.1016/s1053-8119(02)00030-7.


Aphasia
Musso, Mariacristina, et. al., "Training-induced brain plasticity in aphasia." Brain, vol. 122, no. 9, September 1999, pp. 1781–1790, doi:10.1093/brain/122.9.1781

Sarno, J.E. "Emotional Aspects of Aphasia." In Sarno, M.T., Acquired Aphasia. Academic Press, New York, 1981, 465-484.


Brain and Spinal Cord Injury


Chronic Fatigue Syndrome
Brighton & Sussex Medical School and Sussex & Kent ME/CFS Society’s Survey

Crawley, Esther M, et al. “Clinical and Cost-Effectiveness of the Lightning Process in Addition to Specialist Medical Care for Paediatric Chronic Fatigue Syndrome: Randomised Controlled Trial.” Archives of Disease in Childhood, vol. 103, no. 2, 2018, pp. 155–164., doi:10.1136/archdischild-2017-313375.

Crawley, Esther, et al. “The Feasibility and Acceptability of Conducting a Trial of Specialist Medical Care and the Lightning Process in Children with Chronic Fatigue Syndrome: Feasibility Randomized Controlled Trial (SMILE Study).” Trials, vol. 14, no. 1, 2013, p. 415., doi:10.1186/1745-6215-14-415.

Crawley, Esther, et al. “Comparing Specialist Medical Care with Specialist Medical Care plus the Lightning Process® for Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME): Study Protocol for a Randomised Controlled Trial (SMILE Trial).” Trials, vol. 14, no. 1, 2013, p. 444., doi:10.1186/1745-6215-14-444.

Finch, Fiona. (2010). Lightning Process Snapshot Survey of clients' experiences with CFS/ME.

Gupta, Ashok. "Can amygdala retraining techniques improve the wellbeing of patients with chronic fatigue syndrome: A clinical audit of subjective outcomes in a small sample." Journal of Holistic Healthcare, vol. 7 no. 2, 2010.

Gupta, Ashok. "Unconscious amygdalar fear conditioning in a subset of chronic fatigue syndrome patients." Medical hypotheses vol. 59, no. 6, 2002, pp. 727-735. doi:10.1016/S0306-9877(02)00321-3.

Hagelsteen, Johan Henrik, Reiten, Inger Marie Moen. "Evaluering av en behandlingsstrategi." Dagens Medicine, 2015.

Parker, Phil, et al. "Understanding the Lightning Process Approach to CFS/ME; A Review of the Disease Process and the Approach." Journal of Experiential Psychotherapy, vol. 21, no. 2, 2018, pp. 21-28.

Reme, Silje Endresen, et al. “Experiences of Young People Who Have Undergone the Lightning Process to Treat Chronic Fatigue Syndrome/Myalgic Encephalomyelitis - a Qualitative Study.” British Journal of Health Psychology, vol. 18, no. 3, 2012, pp. 508–525., doi:10.1111/j.2044-8287.2012.02093.x.


Depression
Leuchter, Andrew F., et al. “Changes in Brain Function of Depressed Subjects During Treatment With Placebo.” American Journal of Psychiatry, vol. 159, no. 1, 2002, pp. 122–129., doi:10.1176/appi.ajp.159.1.122.

Mayberg, Helen S., et al. “The Functional Neuroanatomy of the Placebo Effect.” American Journal of Psychiatry, vol. 159, no. 5, 2002, pp. 728–737., doi:10.1176/appi.ajp.159.5.728.


Drug & Alcohol Addiction
Parker, P., "Association between impulsivity and flourishing in Substance Use Disorders (SUD): bridging the gap between pathology focused psychology and positive psychology?" European Journal of Applied Positive Psychology, vol. 3, no. 3, 2019, pp. 1-9.

Parker, P., Banbury, S., & Chandler, C., "The utility of measuring flourishing in substance and alcohol use disorders research: a systematic review", European Journal of Applied Positive Psychology, vol. 2, no. 5, 2018, pp. 1-13.


Emotional Regulation
Lévesque, Johanne, et al. “Neural Circuitry Underlying Voluntary Suppression of Sadness.” Biological Psychiatry, vol. 53, no. 6, 2003, pp. 502–510., doi:10.1016/s0006-3223(02)01817-6.

Schwartz, Jeffrey M. “The Volitional Influence of the Mind on the Brain.” Consciousness, Emotional Self-Regulation and the Brain, edited by Mario Beauregard, John Benjamins Pub., 2004, pp. 195-238.


Fibromyalgia
Fors, Egil A, et al. “The Effect of Guided Imagery and Amitriptyline on Daily Fibromyalgia Pain: a Prospective, Randomized, Controlled Trial.” Journal of Psychiatric Research, vol. 36, no. 3, 2002, pp. 179–187., doi:10.1016/s0022-3956(02)00003-1.

Guenter, Dale, et. al. "Neuroplasticity-based Treatment for Fibromyalgia, Chronic Fatigue, and Multiple Chemical Sensitivity: Feasibility and Outcomes." 2019.


Gastroenterology
Drossman, Douglas A., et al. “Alterations of Brain Activity Associated with Resolution of Emotional Distress and Pain in a Case of Severe Irritable Bowel Syndrome.” Gastroenterology, vol. 124, no. 3, Mar. 2003, pp. 754–761., doi:10.1053/gast.2003.50103.


General Neuroplasticity
Bach-y-Rita, P. "Plastic brain mechanisms in sensory substitution." Cerebral Localization, Springer, Berlin, Heidelberg, 1975, pp. 203-216.

Beauregard, Mario, et al. “Neural Correlates of Conscious Self-Regulation of Emotion.” The Journal of Neuroscience, vol. 21, no. 18, 2001, doi:10.1523/jneurosci.21-18-j0001.2001.

Cramer, Steven C., "Harnessing neuroplasticity for clinical applications." Brain, vol. 134, no. 6, June 2011, pp. 1591–1609, doi:10.1093/brain/awr039.

Department of Neurophysiology, Nencki Institute of Experimental Biology. "Jerzy Konorski on Brain Associations." Act Neurobiologiae Experimentalis, vol 66, pp. 75-90, 2006.

Hebb, Donald O. The Organization of Behavior: A Neuropsychological Theory. Lawrence Erlbaum Associates, Publishers, 1949.

Kolb, Bryan, and Robbin Gibb. “Brain plasticity and behaviour in the developing brain.” Journal of the Canadian Academy of Child and Adolescent Psychiatry = Journal de l'Academie canadienne de psychiatrie de l'enfant et de l'adolescent vol. 20,4 (2011): 265-76.

Krech, David, Mark R. Rosenzweig, and Edward L. Bennett. "Effects of environmental complexity and training on brain chemistry." Journal of comparative and physiological psychology vol. 53, no. 6, 1960, pp. 509.

Ochsner, Kevin N., et al. “Rethinking Feelings: An FMRI Study of the Cognitive Regulation of Emotion.” Journal of Cognitive Neuroscience, vol. 14, no. 8, 2002, pp. 1215–1229., doi:10.1162/089892902760807212.

Philip DeFina, Jonathan Fellus, Mary Zemyan Polito, James W. G. Thompson Ph.D., Rosemarie Scolaro Moser & John DeLuca (2009) The new neuroscience frontier: Promoting neuroplasticity and brain repair in Traumatic Brain Injury, The Clinical Neuropsychologist, vol. 23, no. 8, pp. 1391-1399, DOI: 10.1080/13854040903058978

Schwartz J.M. & Begley S., The Mind and the Brain: Neuroplasticity and the Power of Mental Force. 2002 New York: Harper Collins.

Springer, S. P., and G. Deutsch. "A series of books in psychology. Left brain, right brain: Perspectives from cognitive neuroscience . New York, NY, US." (1998).

Young, James A, and Margarita Tolentino. “Neuroplasticity and Its Applications for Rehabilitation.” American Journal of Therapeutics, vol. 18, no. 1, 2011, pp. 70–80., doi:10.1097/mjt.0b013e3181e0f1a4.


Obsessive-Compulsive Disorder
Schwartz JM, Stoessel PW, Baxter LR, Martin KM, Phelps ME. "Systematic Changes in Cerebral Glucose Metabolic Rate After Successful Behavior Modification Treatment of Obsessive-Compulsive Disorder." Arch Gen Psychiatry. 1996; vol. 53 no.2, pp. 109–113. doi:10.1001/archpsyc.1996.01830020023004


Pain
Beecher, Henry K. “Pain in Men Wounded in Battle.” Anesthesia & Analgesia, vol. 26, no. 1, Jan. 1947, p. 21., doi:10.1213/00000539-194701000-00005.

Beecher, Henry K. "The Measurement of Pain." Pharmacological Reviews, vol. 9, no. 1, March 1, 1957, 59-209.

Beecher, Henry K. "Relationship of Significance of Wound to Pain Experienced." JAMA. 1956;161(17):1609–1613. doi:10.1001/jama.1956.02970170005002.

Bigos, Stanley J., et al. “A Prospective Study of Work Perceptions and Psychosocial Factors Affecting the Report of Back Injury.” Spine, vol. 16, no. 1, 1991, pp. 1–6., doi:10.1097/00007632-199101000-00001.

Harkness, E. F., et al. “Is Musculoskeletal Pain More Common Now than 40 Years Ago?: Two Population-Based Cross-Sectional Studies.” Rheumatology, vol. 44, no. 7, 2005, pp. 890–895., doi:10.1093/rheumatology/keh599.

Melzack, Ronald, and Patrick D. Wall. “Pain Mechanisms: A New Theory.” Pain Forum, vol. 5, no. 1, 19 Nov. 1996, pp. 3–11., doi:10.1016/s1082-3174(96)80062-6.

Mendell, Lorne M. “Constructing and Deconstructing the Gate Theory of Pain.” Pain, vol. 155, no. 2, Feb. 2014, pp. 210–216., doi:10.1016/j.pain.2013.12.010.

Price, Donald D., et al. “Plasticity in Brain Processing and Modulation of Pain.” Progress in Brain Research Reprogramming of the Brain, 2006, pp. 333–405., doi:10.1016/s0079-6123(06)57020-7.

Rashbaum, Ira G., and John E. Sarno. “Psychosomatic Concepts in Chronic Pain.” Archives of Physical Medicine and Rehabilitation, vol. 84, Mar. 2003, doi:10.1053/apmr.2003.50144.

Sarno, J. E. “Chronic Back Pain and Psychic Conflict.” Pain, vol. 6, no. 1, Feb. 1979, pp. 112–113., doi:10.1016/0304-3959(79)90164-7.

Sarno, John E. “Etiology of Neck and Back Pain.” The Journal of Nervous and Mental Disease, vol. 169, no. 1, 1981, pp. 55–59., doi:10.1097/00005053-198101000-00008.

Sarno, John E. “Etiology of Neck and Back Pain.” The Journal of Nervous and Mental Disease, vol. 169, no. 1, 1981, pp. 55–59., doi:10.1097/00005053-198101000-00008.

Savage, RA, et al. “The Relationship between the Magnetic Resonance Imaging Appearance of the Lumbar Spine and Low Back Pain, Age and Occupation in Males.” European Spine Journal, vol. 6, no. 2, 1997, pp. 106–114., doi:10.1007/bf01358742.

Stanley J. Coen and John E. Sarno (1989). Psychosomatic Avoidance of Conflict in Back Pain. Journal of the American Academy of Psychoanalysis: Vol. 17, No. 3, pp. 359-376.


Stroke & Traumatic Brain Injury
Dams-Oconnor, Kristen, et al. “Poster 27: Feasibility of a Computerized Cognitive Skill-Building Program in an Inpatient Traumatic Brain Injury Rehabilitation Setting.” Archives of Physical Medicine and Rehabilitation, vol. 90, no. 10, 2009, doi:10.1016/j.apmr.2009.08.057.

Levin, Harvey S., and Jordan Grafman, eds. Cerebral reorganization of function after brain damage. Oxford University Press, 2000.

Sawaki, Lumy, et al. “Constraint-Induced Movement Therapy Results in Increased Motor Map Area in Subjects 3 to 9 Months After Stroke.” Neurorehabilitation and Neural Repair, vol. 22, no. 5, 2008, pp. 505–513., doi:10.1177/1545968308317531.

Taub, Edward, and Steven L. Wolf. “Constraint Induced Movement Techniques To Facilitate Upper Extremity Use in Stroke Patients.” Topics in Stroke Rehabilitation, vol. 3, no. 4, 1997, pp. 38–61., doi:10.1080/10749357.1997.11754128.


Tinnitus & Auditory Deficits
Cheng, Yuan, et al. “Reversal of Age-Related Changes in Cortical Sound-Azimuth Selectivity with Training.” Cerebral Cortex, 3 Sept. 2019, doi:10.1093/cercor/bhz201.

Jastreboff, Pawel J., and Margaret M. Jastreboff. “Tinnitus Retraining Therapy: A Different View on Tinnitus.” Orl, vol. 68, no. 1, 2006, pp. 23–30., doi:10.1159/000090487.

Jastreboff, Pawel J. et. al., "Neurophysiological model of tinnitus: Dependence of the minimal masking level on treatment outcome." Hearing Research, vol. 80, no. 2, 1994, pp. 216-232, doi:10.1016/0378-5955(94)90113-9.

Jastreboff, Pawel J., and Jonathan W. P. Hazell. “Tinnitus Retraining Therapy: Implementing the Neurophysiological Model.” 2004, doi:10.1017/cbo9780511544989.


Vision Loss, Blindness
Bach-y-Rita, Paul, et al. "Vision substitution by tactile image projection." Nature vol. 221, no. 5184, 1969, pp. 963-964.

Bach-y-Rita, Paul. "Sensory plasticity: Applications to a vision substitution system." Acta Neurologica Scandinavica, vol. 43, no. 4, 1967, pp. 417-426.


Additional Research
Finch, Fiona. "Lightning Process - Outcome measures study." 2013, doi:10.13140/RG.2.2.29818.24002.

Finch, Fiona. "Lightning Process Snapshot Survey of clients' experiences." 2010, doi:10.13140/RG.2.2.23107.35366.

This says nothing about the quality of the studies. It's just a classic Gish gallop. You dump a ton of links and of course nobody with me/cfs is going to have the capacity to read through all of those to debate them. Almost anything can get published, and that says nothing about the quality of the evidence. The ones by Crawley et Al have widely available criticisms by David Tuller and others , basically they use almost no objective measures like cpet performance or even something as simple as actometers. Suffering from the same problems as the pace trial.

Instead of dumping tons of links it would be more convincing if you took the few ones that directly apply to me/cfs , and actually break down the studies in detail to show how they prove their conclusions , etc. There is tons of poor quality research in this field, some of it even in good journals. When someone is trying to make a scientific point , it's better if they argue the details with quotes from the literature rather than just link like thirty studies. The latter tactic may be intimidating or confusing to fellow patients, esp those with limited cognitive energy, but would never convince a scientist

 

[suevu]

Yes, I had extensive autonomic testing done by an autonomic specialist. I also have a cardiac pattern that indicates an overactive vagus nerve--high vagal tone indicating an overactive parasympathetic system.

You sound like a typical CCI AAI case. A book one.

 

[suevu]

The allergies and sensitivities mbunke is talking about are things that are also common among people who don't have ME. ME might trigger or worsen some of these comorbid conditions, but they aren't an integral part of ME, at least for the majority of PWME. I have some airborne allergies that started before my ME, and haven't worsened with ME, so I don't consider them part of ME. I don't have greater sensitivities to light or sound or environmental chemicals. Some foods that I used to enjoy now worsen my ME, but I don't consider that to be a food sensitivity, but rather that those substances now alter pathways involved in ME severity. One example is peroxynitrite scavengers.

I think her question is valid. Successfully treating one comorbid symptom of ME isn't treating ME, which is what she's asking about: the fatigue/lethargy and PEM that is specific to ME.

So, to answer your question, I'd say that I don't have any sensitivities other than exertion or chemicals that directly affect the metabolic pathways involved in ME.

All my food sensitivities are gone now, I can tolerate any food, spice or drink (with the exception of alcohol) that will still get me stool bristol type 3, no pain or abnormalities at all in my gut.

Do I qualify? I did have many food intolerances in the past, during my onset.