How I recovered from M E Hell

[mkokanagan]

How I recovered from M E Hell

​

Like other people that have recovered from ME, I could probably write a book about our ME journey. I say our, because this isn't just my story. I have been blessed with the support of my amazing wife and two adult kids, along with other family members, a few friends that stayed with us and a few new friends that have only known myself with this illness. My support system, small but mighty, may not have always understood or maybe even believed I was physically ill, but they did stay around during this roller-coaster ride.

I have also been lucky to have found caring (and some not-so-caring) medical practitioners that have each gotten me a little bit better for a while over the years, with nothing really holding. This journey really started 20 – 25 years ago, with various symptoms that were always unexplained, pain that seemed to have no cause, legs that felt weak and could barely hold me up at times, tiredness that couldn't be figured out, various tests that all showed that everything was just fine. I'm sure you can all relate to this.

Then 10 years ago (Aug. 9Th, 2009), the ____ hit the fan. Work had been very busy for several years. The stress was at a max as we all tried to keep up with the booming building industry and customers expectations that seemed to get more and more demanding every year. I woke up on this morning virtually unable to walk, talk or do much of anything.

I believe that the final straw was all the chemicals we were breathing in during major renovations at work, along with the small renovation we were doing at home to the main bathroom. The day before, I was installing water-proof boards around the tub to get ready for tile installer.

The rounds of testing began and ended up with a diagnosis of Stress. More testing and still Stress. Then a Naturopath began treating me for Chronic Inflammatory Response System / Chronic Lyme Disease, which did help for a little while. I finally got an official diagnosis of ME from the Complex Chronic Disease Clinic that runs out of the Womens and Childrens Hospital in Vancouver, B.C. Their doctors are considered some of the most experienced in this field, but I didn't make any progress on the program.

At this point, I was starting to give in to thoughts that this was as good as it gets. After all these years, I was hovering around 40-50% of “normal”. Certainly better than 10 years earlier, but not getting back into the real world. Still, I never gave up hope that I could get back to working and helping to bring in more than the disability pension.

Then another opportunity popped up. Claudia Goodell, the founder of the ME/CFS Facebook group Race to Solve CFS and a well known advocate had taken leave from the group to look after herself. During that time she had fully recovered through a program called ANS ReWire and had told myself and others about her success.

Like many others, I had looked at many websites and several YouTube channels from various ME/CFS recovery programs, but had always been skeptical and wasn't about to spend any of our money on them. I didn't believe anyone could get better with them. We all had to wait for the scientists to find a “cure”. As I was busy helping to post various studies on the Race to Solve group and other ME/CFS groups it seemed that eventually the illness would be solved.

For those of us getting older though, waiting for a magic pill is beginning to seem too far away. Because of this and the fact that I trusted Claudia when she explained the theory behind the ANS ReWire program and a little of how she recovered, I took the time to have a look at the website and watched the free videos which explained Dan Neuffers' theory on what causes ME / CFS / Fibromyalgia.

I then watched many of the recovery videos on his cfsunravelled.com website from several people who had recovered from these illnesses. Many of these interviews are people who have recovered through their own methods, along with those that went through his recovery program. They really helped me make up my mind to take my health back into my own hands. When you watch several of the recovery videos, you start to see a commonality in their stories.

I believe what the ansrewire.com program does is blend together the known methods that many people have used and the latest brain training / neuroplasticity that is being used by medical professionals for many ailments. Having read up on and watched several documentaries and interviews on how our brain and body can repair itself if you give it the right conditions, this all made sense to myself. The thing I really like about what Dan Neuffer has put together is that it lays out a straight-forward, logical format based on proven strategies.

I started the ANS ReWire program at the end of August 2018 and now am fully recovered from the illness. I am still building up my body strength and endurance, along with getting used to being back into the “real world”. I am getting over the social anxiety that many of us deal with after being isolated from normal interactions for many years. A friend of mine who is a retired Nurse says this is very common after so many years of living in a very small bubble.

I would highly recommend that anyone who wants to get their life back has a look at this program. Yes, there is work involved, but you will come out the other end a new person if you persevere. We all take different amounts of time to recover, so be patient with your progress.

 

[Not dead yet!]

I'm having difficulty reading such a long post. Is it an ad? I don't see any actions that you took to actually recover. What does the program actually do? Can you give an idea of the activities it suggests? For example the stop technique is mentioned in this thread: https://forums.phoenixrising.me/threads/ans-rewiring.57713/

What are some other techniques? Is it a psychology thing? Because the stop technique sounds like it's coming from psychology. Also you're talking about social anxiety. I'm not sure that's an issue for me, though I can't speak for others.

I'm glad it worked for you, but I'm not ready to try it.

 

[mkokanagan]

I tried to keep it short. Definitely not an ad. I have no affiliation with ANS Rewire other than having gone through program. It's hard to explain everything you do, but the goal is to get your body in a place where it can heal itself. When autonomic nervous system is not functioning properly, there is a cascade effect within many of our bodies systems.

Brain rewiring is not psychology, it is about allowing your synapses to create new pathways. A family member has been going through program at local pain clinic, which is very similair, except she says the ANS Rewire is much more thorough. If you can access CBC.ca (national tv network in Canada), look for The Nature of Things. They have two episodes with Norman Doidge that show many illnesses being helped with rewiring.

Also, I have been watching podcasts on YouTube from DR Mark Hyman, who is a functional medicine doctor. On his Doctors Farmacy (this is not a spelling error ) podcast, he interviews many researchers and medical experts. This program has many attributes that they talk about.

If you watch the recovery videos, you will see a lot of commonalities to see what different people have done to recover, not all through this program. I have also had help from Osteopaths, which has really helped with pain and after a while was able to start Qigong, which helped body and mind.

 

[Not dead yet!]

I tried to keep it short. Definitely not an ad. I have no affiliation with ANS Rewire other than having gone through program. It's hard to explain everything you do, but the goal is to get your body in a place where it can heal itself. When autonomic nervous system is not functioning properly, there is a cascade effect within many of our bodies systems.

Brain rewiring is not psychology, it is about allowing your synapses to create new pathways. A family member has been going through program at local pain clinic, which is very similair, except she says the ANS Rewire is much more thorough. If you can access CBC.ca (national tv network in Canada), look for The Nature of Things. They have two episodes with Norman Doidge that show many illnesses being helped with rewiring.

Also, I have been watching podcasts on YouTube from DR Mark Hyman, who is a functional medicine doctor. On his Doctors Farmacy (this is not a spelling error ) podcast, he interviews many researchers and medical experts. This program has many attributes that they talk about.

If you watch the recovery videos, you will see a lot of commonalities to see what different people have done to recover, not all through this program. I have also had help from Osteopaths, which has really helped with pain and after a while was able to start Qigong, which helped body and mind.

Thanks for the details. There's a blog by a woman with dysautonomia called "Let's Feel Better" and now I realize I've read about this before on her blog. This issue definitely needs more public awareness, and doctor awareness too.

 

[mkokanagan]

I think this is going to be the future of much chronic illness care. Brain rewiring, along with fixing our gut bacteria, seem to be where many of the chronic illnesses are going to be dealt with. Hope your research shows that worth trying.

 

[Tamsyn]

I will check into this program ... but I wonder if it's is like the "amygdala retraining" program run by Ashok Gupta and available to use at home. He is a Harley St doc in London UK who got ME and then recovered using this method he developed. The basic premise (if I remember correctly) is that the brain's amygdala gets stuck in a flight or fight mode due to stresses which could range from a virus to an accident to emotional stress. His program proposes to 'retrain' the amygdala. I bought the program, used it every day for months, and gave it my very best shot with an open mind (as I have done with so many "cures" over the many years) ... but it made no difference to PEM, weakness, sleeplessness, pain or any other troubling issues I have with ME. I liked the basic premise of the program, and perhaps this new program has advanced the science to make it more effective? I'm glad it worked for you!

 

[mkokanagan]

I will check into this program ... but I wonder if it's is like the "amygdala retraining" program run by Ashok Gupta and available to use at home. He is a Harley St doc in London UK who got ME and then recovered using this method he developed. The basic premise (if I remember correctly) is that the brain's amygdala gets stuck in a flight or fight mode due to stresses which could range from a virus to an accident to emotional stress. His program proposes to 'retrain' the amygdala. I bought the program, used it every day for months, and gave it my very best shot with an open mind (as I have done with so many "cures" over the many years) ... but it made no difference to PEM, weakness, sleeplessness, pain or any other troubling issues I have with ME. I liked the basic premise of the program, and perhaps this new program has advanced the science to make it more effective? I'm glad it worked for you!

Hi Tamysn
I had a quick look at program you mentioned. Sounds like there may be some overlap between the two, though the ANS Rewire has about 3 x's the lessons and I believe may be quite a bit more intensive. After the initial lessons are done, which I think you can repeat as many times as you need, you keep on using the techniques until you are recovered. It took myself over a year to recover. Others are done in a shorter time or longer time. You have to be patient with yourself, which I know is hard, but really makes a difference.
Perhaps you can do the same thing with Ashoks program.

 

[Tamsyn]

Yes, the ANS looks more intensive and more developed so might work more effectively. Thanks for posting it!

 

[mkokanagan]

Just read the first part of interview with new Medical Director at the Complex Chronic Disease Clinic in Vancouver, which I was where I was diagnosed. His answers seem to validate the ANS Rewire theory.

Interview with Dr. Luis Nacul: Part One

Last month, ME/FM Society of BC volunteer, Howard Searle, made his way to Vancouver to meet with Dr. Luis Nacul, Medical Director of BC Women’s Hospital Complex Chronic Diseases Program (CCDP), at his apartment. Howard was there to interview Dr. Nacul for an article for our Society’s 2019...

www.mefm.bc.ca

 

[Tamsyn]

The paragraph in the interview that deals with a 'centralized CNS' theory reads:

"I think there is a place for the central sensitization theory, but I don’t think this is the main thing happening in ME. As we have discussed, I think this is primarily a neuro-immune disease. I think there is some sort of pathology in the central nervous system, and as a result, you have problems with the autonomic nervous system which is integral with it, but you also have some neuro-endocrine abnormalities, and some metabolic abnormalities "

Either I'm reading this incorrectly, or I don't know enough about ANS Rewire to comment (very possible!) BUT I don't read this paragraph as supporting rewiring as a cure. He mentions immune system, endocrine, and metabolic issues ... these are separate from brain/CNS issues ... and he does not think the brain/wiring issues are "the main thing happening in ME". (If I understand him right).

Nonetheless, the ANS worked for you, and so that is very positive ... plus it's great that we now have this focus of research happening in Vancouver. Maybe some of that good stuff will spread to eastern Canada!

 

[mkokanagan]

Sorry, the link I meant was the Nervous system. The brain is part of that.

 

[Yana74]

Firstly, congratulations- what a relief for you and your family, and well done - I imagine it was a fair amount of work. Thanks for sharing, too.

I’m in Australia and have considered Dan’s program a few times. I did venture into the Amagydala Retraining quite some time ago, but gave up, not that I really gave it a good go. At the time, I was bedridden and it all seemed to hard! My mind is very fast-paced so I find therapies that require me to monitor my thoughts really, really difficult. The woman that was guiding me through it considered herself cured from the program, but was not quite the same as me, symptom-wise. She had had CFS/ME for a long time, I think around 20 years, but did manage to teach a yoga class for people with chronic illness - I got the impression her level of disability wasn’t the same - not that it makes any difference - but I do wonder why these therapies (Amydala, ANS Rewire, DNRS, Lightning Therapy, Mickel) work for some, and not others.

I have read/watched the recovery stories (so amazing to have hope), but not heard of any that have tried ANS Rewire and not succeeded. I think it would be good to get this feedback from Dan.

 

[mkokanagan]

It might be interesting to ask him that question. I'm sure not everyone using any method would succeed. As you say, it requires work. I think one of the good things about program is that you have access to lessons for a few years, so you can watch lessons as many times as needed. I re-watched several of them 2 or more times, in order to understand them . We can all relate to how hard it may be to figure things out in a fog.

 

[Apo Sci]

The paragraph in the interview that deals with a 'centralized CNS' theory reads:

"I think there is a place for the central sensitization theory, but I don’t think this is the main thing happening in ME. As we have discussed, I think this is primarily a neuro-immune disease. I think there is some sort of pathology in the central nervous system, and as a result, you have problems with the autonomic nervous system which is integral with it, but you also have some neuro-endocrine abnormalities, and some metabolic abnormalities "

Either I'm reading this incorrectly, or I don't know enough about ANS Rewire to comment (very possible!) BUT I don't read this paragraph as supporting rewiring as a cure. He mentions immune system, endocrine, and metabolic issues ... these are separate from brain/CNS issues ... and he does not think the brain/wiring issues are "the main thing happening in ME". (If I understand him right).

Nonetheless, the ANS worked for you, and so that is very positive ... plus it's great that we now have this focus of research happening in Vancouver. Maybe some of that good stuff will spread to eastern Canada!

Excellent article that highlights that central sensitization is an effect of the underlying process and not the primary driver. Sure you may be able to use Rewire to cope with it but since the underlying process isn't bein address eventually the progression of the underlying pathology will continue to worsen the course of the disease.

 

[Tamsyn]

Excellent article that highlights that central sensitization is an effect of the underlying process and not the primary driver. Sure you may be able to use Rewire to cope with it but since the underlying process isn't bein address eventually the progression of the underlying pathology will continue to worsen the course of the disease.

Yes, that's how I read it too. Also, I was a little dismayed on the ANS main site to go to the page stating it had the science to prove the ANS theory as a way to overcome ME. However, the page only cited a few articles, and most of them were really old. I would have thought this new ANS theory would have cited much MORE of the NEW research around ME. But I am still interested in learning more about the theory, so if anyone has had success with it, please share your experience. Or is it just glorified CBT?

 

[Apo Sci]

Yes, that's how I read it too. Also, I was a little dismayed on the ANS main site to go to the page stating it had the science to prove the ANS theory as a way to overcome ME. However, the page only cited a few articles, and most of them were really old. I would have thought this new ANS theory would have cited much MORE of the NEW research around ME. But I am still interested in learning more about the theory, so if anyone has had success with it, please share your experience. Or is it just glorified CBT?

CBT is based on the idea that people can irrationally magnificy events into thoughts that disturb them and resulting in anxiety. The problem with it is that it can't address disturbing thoughts that are rational and it has no way to deal with them then. Think, "ok I'm homeless and sick yeah I'll probably go broke and die", not an easy thought to rationalize out of. I think a lot of people doing positive thinking use it as a way to avoid rational disturbing thoughts through thought stopping.

Meditation for stress, on the other hand, can deal with them which is why it is preferred over CBP. It doesn't matter whether the thought is a magnification or reasonable, you deal with it the same way, by learning to push them aside through willfully changing the focus point of your mind. This makes it effective against any harmful thought whether reasonable or magnified/unreasonable. This is why it is preferred by psychologists as a faster and better method than CBT. Psychologists still doing CBP are actually considered old fashioned today. Funny how it is still being pushed as a ME treatment.

 

[mkokanagan]

Thankfully, the program has nothing to do with CBT. Meditation has certainly helped myself and others that I know. I also do a QiGong routine, which is considered a form of moving meditation. I was able to start QiGong after a month or so of working through the ANS Rewire program. Today I do routine that is about 45 minutes long. Feels very good. ☺

 

[Dan Neuffer]

Firstly, congratulations- what a relief for you and your family, and well done - I imagine it was a fair amount of work. Thanks for sharing, too.

I’m in Australia and have considered Dan’s program a few times. I did venture into the Amagydala Retraining quite some time ago, but gave up, not that I really gave it a good go. At the time, I was bedridden and it all seemed to hard! My mind is very fast-paced so I find therapies that require me to monitor my thoughts really, really difficult. The woman that was guiding me through it considered herself cured from the program, but was not quite the same as me, symptom-wise. She had had CFS/ME for a long time, I think around 20 years, but did manage to teach a yoga class for people with chronic illness - I got the impression her level of disability wasn’t the same - not that it makes any difference - but I do wonder why these therapies (Amydala, ANS Rewire, DNRS, Lightning Therapy, Mickel) work for some, and not others.

I have read/watched the recovery stories (so amazing to have hope), but not heard of any that have tried ANS Rewire and not succeeded. I think it would be good to get this feedback from Dan.

Thanks for your question Yana - sorry, I just came across this by chance now. Hopefully you will see my reply.

I probably haven't done a great job of 'marketing' the ANS REWIRE program to explain what it is. The program is an educational program that teaches a range of strategies but most importantly lays a foundation for understanding and a recovery framework. So whilst there are elements in the program that may be similar to mind/body approaches/therapies you mention, ANS REWIRE is really about taking a wider recovery approach than any one strategy.

So the program encourages you to work with a range of health care practitioners to resolve particular dysfunctions or triggers you experience, whilst helping you engage in a set of core strategies designed to normalise ANS function. That's why we discuss a range of healing strategies and treatments and how you can work more effectively with your doctor, naturopath, psychologist or whoever else you need.

The program goes into why singular approaches don't work for most of us - perhaps this blog I wrote some years ago also goes towards answering that question:

https://cfsunravelled.com/why-are-others-recovering-from-mecfs-and-fibromyalgia-and-not-i/

The most important thing to say about this issue is that it should not be about self-blame. Yes, some people don't put in the effort, yes, some people don't "do it right" - but many people appear to do all the right things and still don't progress! In my view and based on my experience, this is because they are not resolving a major trigger or dysfunction. That's why it's so important to go beyond just 'some program' - it's about making it YOUR recovery program. That is what ANS REWIRE is all about.

So for example, if someone has poorly controlled Type 2 diabetes, hypothyroidism that is not well supported, psychological issues like severe depression, anxiety or PTSD, a severe parasite gut infection etc etc. and they don't address these, their ANS normalisation and overall recovery is likely to be frustrated.

Sometimes these things are obvious, sometimes they are not.

Even if we rule out psychological and physiological complications, the person may be doing the right things but it just doesn't quite work for them. In my experience, they often benefit from a different approach - someone telling them to do essentially the same thing, but in a different way. I could go on - this really needs an interview or podcast to do it justice, not a comment post!

In terms of your question of whether there are people who tried ANS REWIRE and it didn't work for them - the answer is absolutely yes. But I cannot give you any kind of meaningful statistics because it is a self-help program. It's not in a clinical setting so we don't have accurate numbers. I simply don't get the feedback from people and often find out later by chance that they fully recovered, had a partial recovery or no progress.

The reasons for these variances is very complicated in my view. So even if we had statistics, they don't necessarily determine your odds of success, because we need to understand WHY people have variable outcomes so that you can tip the odds in your favour!

So on that note, I am very sceptical about anyone who claims certain success rates, because they are likely based on statistically insignificant numbers and perhaps just as importantly, don't account for the complications as I indicated earlier (eg. the comorbidities that trigger ANS dysfunction). Statistics can still be insightful if they are based on large enough numbers, but the complications need to be categorised meaningfully.

Hopefully this helps you understand why I publish all kinds of recovery stories on cfsunravelled.com , including what people would consider to be from the 'competition'. It's my belief that it's really important that we explore all options and find the right fit that resonates with us.

So whilst I have had people who have tried those other approaches without success then try ANS REWIRE and succeed, I can tell you for sure that it also goes the other way. This may seem surprising given that ANS REWIRE has a much wider scope - however, for some folk less is more! It means they can focus their efforts and if that singular approach works, then their more focussed approach can create a better outcome.

Hope that's helpful and appreciated.

 

[Yana74]

Thank you, Dan, for your honest and thoughtful response ?

 

[Abrin]

So the program encourages you to work with a range of health care practitioners to resolve particular dysfunctions or triggers you experience, whilst helping you engage in a set of core strategies designed to normalise ANS function. That's why we discuss a range of healing strategies and treatments and how you can work more effectively with your doctor, naturopath, psychologist or whoever else you need.

I hope you don't mind if I ask a question about the program.

I was just wondering what benefits ANS REWIRE has over something like tracking heart rate variability in order to help normalize ANS function?

I have wondered about the program in the past but the general sense I've gotten from the literature I've read and the videos I've watched about it is that it just many just teaches you strategies to help you spend more time in PNS?

I just wanted to clarify with you to see if I was making false assumptions about the nature of the program and if it was more wide encompassing then that.

Thanks for your time.