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“Stop Trying So Hard to Recover!” Dan Neuffer

Dan Neuffer has been investigating ME/CFS and FM recovery stories longer than anyone. In our 3-part series of interviews so far, Dan has said that he’s now seen so many recovery stories that he’s stopped counting them, that he’s seen many bedbound people recover, and if not completely, at least to 50-70%, that he believes everyone can recover, and in this last part, his best advice is to stop trying so hard to recover (!).

The last part of our long interview was the most interesting for me. At this point, the interview was verging on two hours and by the end of it, if you couldn’t tell in the beginning who probably had ME/CFS and who didn’t (and you probably could), as the day turned into night in my van and the mysterious red band on my check deepened in color – I was clearly fading. Dan threw so many intriguing ideas my way that I left the interview exhausted but with a lot to think about.

The Dan Neuffer Interview Pt. 4

Watching the video is highly recommended, as you can get a sense of who Dan is from it. There’s also a written synopsis with added reflections from me below.

  • Dan shares a key concept for recovery from Chronic Illness 00:00:17
  • Dan talks about patterns of symptom improvements in recovery 00:03:01
  • I ask about subgroups that recover more quickly 00:04:55
  • I raise the issue of genetics and predispositions 00:11:22
  • Dan talks about mental health impact on recovery 00:16:46
  • Dan’s surprising answer to Cort asking about people’s struggles with recovery with severe illness 00:19:44
  • The dichotomy of the illness & need for distinctions 00:24:12

Link to download the first 10 chapters of Dan Neuffer’s book, CFS Unravelled, for free: https://cfsunravelled.com/hr/

Link to Dan Neuffer’s YouTube Channel:  @cfsunravelled1  

The Gist

  • Dan Neuffer has been tracking ME/CFS and fibromyalgia recoveries longer than anyone. In the 4th and last part of my interview with him, Dan stated that miraculously rapid cures – while they do occur – are the exception and not the rule, in his experience. Recovering from ME/CFS/FM is more a matter of continuing to accumulate small gains over time. Small gains, though, can be easily missed in a disease that produces so many problems.
  • People who have quicker recoveries tend to have done things in the past that helped them. Dan remembered one person with Buddhist training who was able to calmly use the practices in his course and recover quickly despite being quite ill. That brought up Dan Moricoli’s story of recovery from being severely ill. Besides his yoga practices and disciplined pacing, Dan accepted everything the illness brought to him.
  • Dan’s experience is that people who recovered solely using mind/body approaches tend to be on shakier ground because they often haven’t resolved what caused them to become unwell in the first place.
  • Even some people who have never been well – have been sick since childhood – have achieved health.
  • One of the big takeaways from this last part of the interview was Dan’s advice to stop trying so hard to recover. Do not aim for full health right now – it just increases your stress. You don’t have the capacity to fully recover right now anyway – but you do have the capacity to feel a bit better – and that’s the key.
  • Instead, focus on these questions: What can you do to make life a little better? What can you do to reduce your symptoms a little bit? What can you do to feel a little happier and appreciate and value any gains that you’ve made?
  • When you feel a bit better – don’t launch yourself into life – back to the many things you think you should do.
  • invest whatever gains in wellness you’ve gotten into more wellness – like taking on a hobby or doing something you love. Wherever you are – whether you’re still bedbound or at 50% or 70%, invest whatever gains you’ve gotten back into more wellness.
  • While pacing can be helpful, it should not be the sole focus, and he believes that solely relying on pacing can be harmful as it can sensitize our systems (presumably because they are not getting the stimulation they need?).
  • Instead, Dan’s focus is on finding ways to stimulate the nervous system just enough – but not too much. The goal is to retrain the nervous system so that it doesn’t respond so dramatically to stimuli. If you remain cloistered, you can’t do that and you’ll be stuck.
  • It’s not what we do to recover – it’s how we do it – and that’s probably the biggest message Dan wanted to give to people. His parting thoughts were: “If you can aim for small incremental gains without the pressure of full recovery, and invest your wellness in something that makes you happier and not push yourself, I think that would really serve you”.
  • Watch the interview and get access to the first part of Dan’s book and his website and YouTube channel at the top of the blog.

 

The Slow, Sometimes Hard-to-See, Progress in the Beginning

For Dan, as a patient, it was always all or nothing; it’s got to be fixed right now! But as Dan will note later in the talk, miraculously rapid cures – while they do occur – are the exception, in his experience. Recovering from ME/CFS or similar diseases is more a matter of continuing to accumulate small gains over time. Small gains, though, can be hard to see.

Arrow bursts through

Rapid miracle cures are the exception to the rule. Most cures occur slowly over time.

For one, there’s the problem of “cognitive distortion”. Small gains are harder to chart. As some symptoms disappear, it’s not hard to forget to chalk up that gain – perhaps because of all the others that are left. Dan said when he asks people, “how are you doing?”, he sometimes hears “mostly the same” yet when questioned more precisely (“what about this symptom”), they’ve forgotten that they had it.

I remember Dr. Peterson referring to patients not being fully aware of the progress they’re making. I don’t think this is ME/CFS specific, though. I think it’s pretty much part of the human condition. As human beings, we tend to be wholly focused on what’s wrong, and there’s a lot “wrong”, or at least a lot of what we’d rather not have, that’s there.

Plus, Dan noted that core symptoms like fatigue take longer to get impacted, aren’t reduced, then they tend to overwhelm progress in the other systems, while sensitivities to things like lights, smells, and emotions often tend to disappear first.

The Quicker Recoveries

One person who was attacked while in bed developed PTSD and fibromyalgia shortly afterward. Despite being severely disabled, she’d made complete peace with the illness. She still hoped to recover but was OK with being ill and Dan believes this changed her level of stress and helped her proceed.

She was willing to try new things – like changing her expectations in the midst of feeling dizzy – something that Dan said sounded rather insane and, on the face of it, made no sense – but which she was able to do and eventually retrain her nervous system. She’d done Buddhist meditation for decades and when it came time to embrace new practices, she did so calmly and coolly. She ended up having a very rapid recovery.

Again, that reminded me of Dan Moricoli’s story. Dan had studied Buddhism and other practices before becoming severely ill where he described being in a coma-like state for months. Stressful physical exertions could cause his arms to flop around – sometimes hitting him in the face and his speech would slur.

Dan Moricoli was impaired to the extent that his future looked bleak indeed, yet he fully recovered using disciplined pacing, yoga breathing techniques, and a very slow ramp-up of exercise. One thing he said struck me – he said he accepted the illness from the beginning. He never fought it (at least not for long), he was never a victim of it (at least not for long), he didn’t ruminate about what he’d lost (at least not for long) – he was able to just accept it.

My jaw dropped at this almost superhuman level of acceptance, but I imagine his prior work in these areas and his ability to accept things as they were probably helped.

The Miracle Cure Recoveries

Every now and then, you hear about people who go from being ill for 30 years to hiking in the mountains in 3 months. Dan was initially skeptical of these reports and he would drill people to make sure they had this disease.

https://www.healthrising.org/blog/2015/03/22/on-the-path-dan-moricolis-remarkable-chronic-fatigue-syndrome-recovery-story/

He’s concluded that people who get well quickly tend to have resolved what led to them becoming unwell. Dan’s experience is that people who recovered solely using mind/body approaches tend to be on shakier ground because they often haven’t resolved what caused them to become unwell in the first place.

Recovery After Never Being Well

The past is not necessarily prologue, though, and our destinies are not fixed. Dan then said something that helped explain why he thinks all of us can become well. He said he’s met people who have been sick since childhood who have recovered. Dan would poke back at them.

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“How do you know that you’ve recovered?”

“I’ve never felt so well before.”

“How do you know – when you’ve never felt well before?”

Often, Dan says they are not recovered – not fully. They don’t have a frame of reference for health. They’re 60 or 70% recovered. They’re just so much better that they think they’re back to normal health, but they’re not.

In the past, Dan has referred to more normal cases of ME/CFS – including himself – in the same way. In the same way that we sometimes don’t recognize what progress we’re making, we also sometimes think we’re “recovered” when we’re not – we have more health to go.

A PTSD-Like Illness?

If this is an autonomic nervous system disease, then you’re in a difficult situation, as almost anything can trigger a stress response. I don’t know what PTSD is, but I said it sounds like something like ME/CFS/FM could set you up for a PTSD-like response to potentially everything.

Dan’s view is that PTSD and ME/CFS/FM are similar disorders; it’s just that PTSD has a psychological component that ME/CFS doesn’t have. Regardless, it’s the same parts of the brain that are going bananas.

Stop Trying So Hard to Recover!

watering seedlings

In Dan’s experience, small gains that get put into more wellness are the best approach in ME/CFS and FM.

What about people who are in such a fragile state that they’re afraid to try anything? They’ve tried things in the past and the consequences have not been good, or have even been horrific and they’re afraid to do anything at that point.

Without having any negative (or positive responses) to just about anything, I’m in that camp to some extent. My body seems so touchy and variable that I’ve been leery of exposing it to pharmaceutical drugs. I’ve gotten over that recently and am trying a bunch of things (guanfacine, Doxepin, modafinil, montekulast, nicotine patch) and it’s mostly going fine, but I tend to delay, want my body to be in a good state before I try something. That meant some things have sat on my shelf for months before I gave them a try.

Dan’s advice was startling: stop trying so hard to recover. Take away the pressure of getting to a full recovery. Do not aim for full health – it just increases your stress. You don’t have the capacity to fully recover right now anyway – but you do have the capacity to feel a bit better – and that’s the key.

  • What can you do to make life a little better?
  • What can you do to reduce your symptoms a little bit?
  • What can you do to feel a little happier and appreciate and value those gains?

This may sound like a strange strategy, but it fits with Dan’s notion of ME/CFS being an autonomic nervous system, or a broken stress response disorder. Helping to heal the ANS – which is firmly entrenched in a fight/flight response – is one way people get out of this disorder.

When you feel a bit better – don’t launch yourself into life, back to the many things you think you should do. Don’t go “skateboarding on the roof again” with your health. Dan said we always complain about how everyone doesn’t understand this illness – how it doesn’t get the respect it deserves – but we still don’t give it the respect it deserves either. We are the worst. Dan said he’s seen hundreds of people try to throw themselves back into the thick of things when they start to recover and then fall back.

Instead of doing that, invest whatever gains in wellness you’ve gotten into more wellness – like taking on a hobby or doing something you love. Wherever you are – whether you’re still bedbound, or at 50% or 70%, invest whatever gains you’ve gotten back into more wellness.

This is where he believes ME/CFS becomes a spiritual journal. There’s nothing you have to do. It’s all a fabrication of your mind.

I mentioned Fred Friedberg’s study which found that improvement was associated with having more uplifts. The patients weren’t well, but those that tended to experience some improvement had more uplifting experiences. That same improvement didn’t happen more with people who were pacing more. Pacing may have helped them not crash as much, but it didn’t, by itself, necessarily result in improvement – something else was needed. Dan said that resonates with everything he’s experienced and called having more uplifts “an essential part of our recovery”.

“Uplifts” Associated with Improvement in ME/CFS Study

Pacing Not the Entire Answer

balance stones

Finding the right balance between too little and too much stimulation, and retraining the brain not to over-react to stimulation, is important.

Warning that “I am full of mixed messages”, Dan noted that people start pacing and stop having so many flareups but then said, “Pacing is terrible(!)”, adding that by doing so, you may be sensitizing your nervous system – but also that not pacing is terrible too – by doing too much, you keep over-activating your nervous system.

It’s the focus that counts. I had the feeling that, for Dan, pacing is fine and good, but that while it’s probably a part of many people’s recovery, in Dan’s experience, our focus should be on finding a way to stimulate – but not overstimulate – a very, very twitchy nervous system/body.  We need to retrain the brain/nervous system how to respond to the stimuli. If you remain cloistered and don’t give it stimuli – how can you retrain it?

Most people do too much and too little at the same time. They don’t give themselves the right kind of stimulus to retrain the nervous system. He didn’t argue with people’s experience that graded exercise therapy made them sicker, yet he knows many people who employed graded exercise therapy – just not in the linear, rigid way we’ve seen it done – and were able to recover.

It’s not what we do to recover – it’s how we do it – and that’s probably the biggest message Dan wanted to provide. He said:

“If you can, aim for small incremental gains without the pressure of full recovery, and invest your wellness in something that makes you happier and not push yourself, I think that would really serve you.”

The Recovery Series Interviews with Dan Neuffer

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