Reddit mentions of CFS Unravelled: Get Well By Treating The Cause Not Just The Symptoms Of CFS, Fibromyalgia, POTS And Related Syndromes

Hello, I'm also a chronic pain patient, as is my husband. You bring up many valid concerns. I have been researching the autonomic nervous system in regards to my illness (ME/CFS and Mitochondrial Disease) and also in regards to my husband's undiagnosed pain syndrome.

My opinion of the answers the researcher is giving are mixed. There are some aspects of their short explanations that I understand a bit better than someone who may have not been investigating the autonomic nervous system. The researcher is not really communicating very well about all the ins and outs of the autonomic nervous system, which I guess is difificult with an AMA. In addition, they are using some very inflammatory language about rewards and behavior, that is not helping their cause. I'm not 100% sold on all of their methods and conclusions and I'm generally skeptical when "psychologists," try to tackle these kinds of problems.

However, I encourage you not to "throw the baby out with the bathwater," so to speak, when it comes to the idea of being able to "hack" the autonomic nervous system through changes in routine and attitude. There's a field of study called "Neuropsychiatry" and a similar one called "Psychoneuroimmunology." Both are beginning to understand the autonomic nervous system as both a "top down" system, and a "bottom up system," meaning that communication from the interior body impacts sensation, but it also flows the other way, where sensation (which can be physical or emotional) can impact the structure of the brain/nervous system as well. They often use the term, "feeling states," instead of physical and emotional sensations, and don't differentiate between the two.

In the researchers defense, I don't think they're trying to insinuate that anyone "caused" their own pain, or is seeking rewards in the way you are describing. However, I also think they gave an oversimplistic and rather dismissive response to the very complex issue of opiate pain meds. I wonder if there is a language and cultural barrier at play in the mix.

I don't know anything about Loin Pain Haematuria Syndrome, and don't know if any of this stuff is applicable to your situation. But, if you're interested in understanding some of the ins and outs of the autonomic nervous system in relation to pain, I highly recommend checking out Dan Neuffer's book, CFS unraveled, which has info helpful for those not only with CFS, but also chronic pain. He also has a website with a free video series that describes much of what's in the book. It's called ANS Rewire, and though I believe you have to sign up to get access to the videos, they are all free.

To understand the idea of "feeling states" in relation to brain structures and how they both function and can be affected, I highly recommend this video by neuro-psychiatrist and professor, Mark Solms. It's about an hour long, but it will change your understanding of how your mind works in regards to pain, and other things as well.

I appreciate how challenging your situation must be, and I wish you well!