This is the 3rd in a series of interviews with Dan Neuffer. The creator of the ANS Rewired program and the author of CFS Unravelled, Dan has been exploring the world of recovery from chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) and related diseases for over ten years.
Highlights from the interview (plus some extra tidbits and links) are below. I encourage everyone, though, to watch the interview to get a sense of who Dan is and what he is about.
I asked Dan, “What about people who have tried seemingly everything but who are not moving forward?”
Dan says that includes just about everyone! We all try all these things but don’t seem to make any progress. For one, we think we have tried it all but, of course, we haven’t, but more importantly, probably the most important mistake is people tend to hop from one thing to the next – they don’t operate strategically. They try this and then they try that. They should be trying this then they add that then they add something else – that’s the key.
It’s one thing to do something and it’s another thing to do something effectively. He has many doctors who’ve recovered in his program and he’s asked them about patient compliance. They’ve reported that patient compliance is far from 100% even for drugs that do work let alone for things like lifestyle changes such as bedtime routines, meditation, and diet that take more effort.
I noted how poor I am now at patient compliance. I’m doing exactly what Dan spoke about. I try something for a while, and when it doesn’t work, I jump to something else. Even when I try something, I don’t do it well. I probably don’t stay on things long enough or I’m not consistent. My guess is that too many years of failure have dulled my commitment and follow-through
So how do we persist with things? Dan proposed that the positives have to outweigh the negatives. What really works, though, is experiencing that something is working – there is no more powerful incentive than that.
Regarding mind/body work, the path can be complex and convoluted. Dan said he’s frequently seen someone try his program or another, have trouble with it and go away and try something else, or maybe read some books and then they try it again – and then they “get it” and it works. That made me think of Dr. Eleanor Stein’s story: it took her years of practice until it REALLY kicked in, but when it did, she recovered fully.
The way you approach your recovery is important. Going into it with an “I have to get well now” approach is probably the least effective approach. It’s probably going to cause more stress – not exactly the thing you want in a disease with broken stress responses. One of the odd things, then, that can inhibit mind/body work is trying too hard. A calm, happy, healing environment – not an easy thing in such a difficult illness – is best.
Dan noted that for most people, it’s one or the other – a mind/body or physical approach, but he’s a proponent of both. Taking something to reduce inflammation and trying to retrain your brain at the same time can seem like a conflict, though, to some people and that conflict can loom so large that they might do better focusing on just one. For his money, though, both done together is preferable.
He reported that he’s seen many people who’ve focused purely on mind/body approaches come to his program – add in the physical approach, along with perhaps a more flexible mind/body approach – and subsequently recover.
I asked Dan what percentage of people with these illnesses could get well if they just did the right treatments in the right way and how many people are just too ill to recover given the treatments present.
Dan said he was coming from his experience only and that his attitude towards recovery had changed over time. After noting that at one time he felt he was too ill to recover, Dan reported that when he started ANS Rewire, he thought that people who have been ill for too long or people who are too ill were not going to be able to recover.
Noting that neurons that wire together fire together – a central tenet of neuroplasticity – and that neurons that have wired together longer should logically fire together stronger (i.e. be more difficult to rewire), it made sense to believe that people who’d been ill a long time probably weren’t going to recover or get significantly better. Likewise, he felt that people with more physical dysfunctions probably weren’t going to recover or significantly improve.
His experience over time, though, has annihilated that way of thinking. He’s seen people recover who he thought had no chance of recovery and recalled someone who was homeless and at 10-15% functional level who made a 70-80% recovery.
He’s met many people who were in bed and couldn’t tolerate listening to an audio tape who subsequently either recovered fully or recovered to 50 or 70% of normal. He noted that most of the time we’re in a bedbound state, it’s not accurate to say that we’re doing nothing. Mentally and emotionally, our minds can still be in a very active and agitated state; in other words, there’s still a lot going on.
(In her book, “The Last Best Cure”, Donna Jackson Nakazawa wrote about the pro-inflammatory immune factors that get released during times of mental agitation and how reducing that agitation helped her dramatically improve her autoimmune disease.)
People can, of course, be so ill that nothing is going on mentally. At one point, Dan was so ill that he said he wasn’t even aware of what was going on.
I recalled Dan Moricoli who said he thought he was in a coma-like state for months at one point. Probably because of the extensive mind/body work he’d done in the past, Dan Moricoli was somehow able to meet a devastating case of ME/CFS without agitation. He was able to accept his illness from the beginning and I wondered if that helped his subsequent recovery. (Using extreme pacing, yoga, and breathwork, Dan Moricoli ended up fully recovering.)
A kind of mental pacing, then, can assist recovery. Dan noted that while mind/body stuff sounds “fluffy”, extensive research on chronic pain indicates it can be effective. Drugs, for instance, aren’t enough to really blunt the pain burn victims experience when they have to undergo the horrific treatments they need to get better. Now they’re being asked to play games on virtual reality headsets when they undergo their treatments.
For a mind-blowing example of how incredibly effective neuroplasticity can be for at least some people, check out Dr. Moskowitz’s story.
Dan noted that when we’re talking about retraining the brain we’re asking people to do weird, stupid, ridiculous things like experiencing pain without it hurting. Context, Dan said, is everything. If you don’t understand the science and understand how it works, it will seem like baloney. If you do understand it, then it’s easier to move forward on what seems like an impossible task. (Most pain neuroplasticity approaches start by explaining the science behind neuroplasticity.)
How ill have people been that Dan has seen be able to recover or substantially improve? Dan said he’s seen many bedbound people recover, or if not recover, get back to 50 to 70% of normal health. It’s not the severity of illness that shocks him – he’s seen too many bedbound people get dramatically better – it’s the people with so few resources who’ve recovered that amazes him now. It blows him away what people are capable of…
The Dan Neuffer Interview Series on Recovery From ME/FS and Fibromyalgia
- Pt. I – Dan‘s Illness Experience
- Pt. II – Broad Themes and Why He’s Stopped Counting Recovery Stories
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