Published on June 11, 2019 by Dan Neuffer
Last updated on July 6, 2020 by Dan Neuffer

21 comments

Claudia shares her reflections on three decades of illness and advocacy work and her insights for recovery

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picture of Claudia with ME/CFS/MCS/Lyme/Fibromyalgia recovery details

It’s hard to get your head around suddenly feeling well when you have been severely ill for over three decades.  Claudia shares how a book review request suddenly opened a whole new world to her that led to her recovering her health.

Having already overcome Chronic Lyme, she was still sick with the symptoms of ME/CFS, Fibromyalgia and Multiple Chemical Sensitivities.  Then, the concept of ‘recovery’ crosses her desk, something she never heard of and shortly later, she enrolls in ANS REWIRE and goes on a journey that leads to a fast recovery leaving her feeling a little disorientated.

Claudia has a lot of insights on the recovery process, so listen carefully to this wonderful interview.  For anyone in the ANS REWIRE program, look out for the additional ‘Insights Interview’ portion inside the program!

Transcript Part 1

Dan:      Imagine being sick for over three decades with fibromyalgia chronic Fatigue syndrome (ME/CFS) multiple chemical sensitivities (MCS) and chronic Lyme disease.  Imagine being closely connected to the advocacy world being an advocacy leader and being up-to-date with the research when suddenly you come across somebody.

Talking about recovery what’s that you say never heard of it?  Now imagine making a full recovery but imagine doing it unusually quickly in just three months. Well I'm excited to bring to you this interview with Claudia which was recorded six months after she recovered and at the time of publishing now she's actually been well for over a year. 

You can probably appreciate that this would be quite a whirlwind experience and given her vast experience with the illness and the advocacy world Claudia has a lot to say and she has a lot of wisdom to impart. So to make it easier I've actually broken this interview into a number of parts so that you can enjoy them in in bite-sized chunks. Now please don't make the mistake of skipping ahead to find that magic cure. The wisdom and the lessons are throughout the whole interview. It's about understanding how Claudia made that shift in paradigm.  Claudia actually used the ANS rewire program but what is key is understanding how she came to use it so effectively and she shares a lot of insights in this interview.

For people in the program there's also an additional portion that is published inside the Insight Sections so make sure you watch that. You might also like to listen to the testimonial for ANS Rewire that Claudia recorded where she shares her thoughts on what made her experience such a success.

So get comfortable and enjoy this wonderful interview with this amazing lady who really understands the recovery process. You can binge watch it or you can enjoy it in small chunks. It's totally up to you. I look forward to your comments as usual.

Dan:      Today I'm here with Claudia from the US. Hi Claudia. How you doing?

Claudia:  Hi Dan I'm doing great.

Dan:      Yeah it's not a loaded question now. Whereabouts in the US are you?

Claudia:  I'm in Phoenix Arizona. Phoenix Arizona.  So the Southwest.

Dan:      Yeah and um look you recovered from CFS and fibromyalgia. You were in the program and you recovered about six months ago but you were actually ill a long time and involved in advocacy as well. Can you tell us how long ago it was that you became ill?

Claudia:  I became ill in 1985, over 30 years ago.

Dan:      Yeah, 33 years ago wow and I guess before you got ill, you’re always a healthy person?

Claudia:  Yeah, pretty much. I had a thyroid issue as a child but other than that I was a very healthy person.

Dan:      Okay.

Claudia:  Yeah .

Dan:      And so what happened? How did you know that something was wrong? What were your first symptoms?

Claudia:  Um, I would start by saying I was under a lot of stress at that time. I was 25 and I was recently divorced with a child, didn't have any education or resources, so a lot of stress and I got sick.  I got herpes simplex and then two viruses all in the same few months, I would say. Bacterial, viral, I don't know what they were but I was just really floored with sickness. That was the start of progression. That was when I began to know that something was wrong. I was not returning to my old self.

Dan:      Right, yeah. Must have been very tough. You know being a single mom and then being ill?

Claudia:  Yeah.

Dan:      Yeah. But what happened? You went to the doctor and what did they say at that point?

Claudia:  I, you know, I was young, I was 25 so I attributed it to stress mostly. Um, when I had some real hard core symptoms I would go to the doctor and try to figure it out but nothing really ever came if it so I would say mainly at that time I just kept pushing. Yeah, I um, I was really pushing too. I ended up going to college and graduate school and working and I had, um, my husband now I was dating him so it's a very active kind of stressful fast-paced lifestyle. So but I did start at that time trying to figure out what was going on so the investigation began in 1985 and really nothing was uncovered for over 20 years.

Dan:      Twenty years that's when you got diagnosed is that right?

CLAUDIA:  I was diagnosed in 2005.

Dan:      Wow.

Claudia:  But because at that point, I completely crashed. I could no longer even get through a shower to get ready to go to work in the morning.

Dan:      Yeah.

CLAUDIA:  I was sitting on the floor in the shower holding my hair dryer up with my you know hand because I couldn't, I couldn't even get ready yeah so yeah things came crashing down at that point. I don't know why.

DAN:      Nothing had happened.

CLAUDIA:  Nothing that nothing different.

DAN:      Just years of illness.

CLAUDIA:  Yeah.

DAN:      Yeah.

CLAUDIA:  Well, the job I was in was extremely stressful I would have to say I had been an audiologist, a clinical audiologist for many years and I thought that was what was causing my problems so I left that field and I went into pharmaceuticals which was horribly stressful. I was traveling a lot with a, you know, my car and it was a very, very stressful job. So I think that stress was probably what caused me to have that big crash.

DAN:      Yeah.  Well, anyone who has got Fibromyalgia will know that as soon as we place too many demands on ourselves we tend to have flare-ups, don't we?

CLAUDIA:  Yeah, yeah.

DAN:      And that makes things very, very difficult. Goodness, so long to get diagnosed and, and you know I mean what kind of what led to the diagnosis? I mean obviously, you were so severely ill but I mean, I guess you had the fatigue and you had pain, you got diagnosed with CFS and Fibromyalgia?

CLAUDIA:  Yeah. I was diagnosed by a Rheumatologist, eventually. I think I counted, I saw 22 specialists in that period of time and no one there some people were indicating that it might be

CFS but she actually diagnosed it. Okay. I had extreme pain every day all over my body. I had migraines. I had cognitive issues that were severe at that point. I was trying to drive to doctor’s offices that I would call on and I couldn't remember how to get to them. I had to pull over, and this was before cell phone navigation, so I had no idea where I was. I couldn't remember words. I was losing language capability. I was my short-term memory was gone so it was a lot of hard neurological symptoms that were very scary and then of course the physical pain and lots of digestive issues. I was diagnosed with Irritable Bowel Syndrome at that time so yeah the exhaustion was just so much it was overwhelming and it just, at that point, I couldn't get out of bed so I was forced to leave my job and in the process of trying to get the short term-long term disability with my job, they required a diagnosis. So yes, I was really pushing to try to get a diagnosis and yes I had a lovely doctor at the time who also had a chronic illness so she understood and, and did the best she could to diagnose, to fill out paperwork and get to the bottom of what was going on.

DAN:      And did you have a lot of other symptoms like sensitivity to sounds or lights?

CLAUDIA:  Yeah.  When I had migraines, I had extreme sensitivity to light. I, I pretty much always had a sensitivity to loud sounds. I also noticed that if I was scared, suddenly like my husband used to like to pull pranks where he would just say “boo”, I could feel surges of adrenaline shooting down on my arms and that was, and so I knew something was really not right with my nervous system. I could just tell.

DAN:      What, what about sleep, sleep issues?

CLAUDIA:  My sleep was terrible. I went for a sleep study at a university and they said that I had a sleep problem but it was not apnoea it was that I had no, no deep sleep, whatsoever so my cells were not recovering during my sleep. So that was an issue.

DAN:      Yeah. I mean you we spoke before and you mentioned quite a lot of symptoms. I mean you even you also had chemical sensitivities is that right?

CLAUDIA:  I did. I really didn't tolerate any kind of medications and I didn't tolerate smells. A lot of smells were just blah. I would get a migraine literally from smells if I walked through Home Depot I had to get through it really quickly. Pesticide smells, perfumes, Alcohol. I couldn't tolerate alcohol at all.

Dan:      Yes

Claudia:  One sip and I would feel a migraine coming on.

DAN:      Yeah, yeah. And did you find that you’d get run down a lot like and you'd be susceptible to catching flus and, and colds all that?

CLAUDIA:  You know interestingly I did not I didn't get any kind of flu or cold or normal sickness throughout at least that last 13 years.

DAN:      Wow, wow.

CLAUDIA:  Yeah, it was the strangest thing. I would say I'm the healthiest sick person I know.

DAN:      Yeah, yeah, well I guess you probably over the 20 years of illness probably learned how to take care of yourself very well given how vulnerable you are.

CLAUDIA:  Maybe it was a lack of exposure.  I wasn't around children, I,  my daughter was grown, I really didn't socialize that much but Yeah, I always thought it was my immune system was not properly responding anymore

DAN:      Right.

CLAUDIA:  It wasn't doing its job I don't know. Yeah totally. So my, my relapses were more in the form of exhaustion and you know a little bit of a fever feeling and that sort of lots of pain.

DAN:      I'm just thinking you had all these symptoms and they were obviously severe.

CLAUDIA:  Yeah, yeah.

DAN:      And you know, you know you had to even stop working and when you were working, you were struggling. I mean, you know, what did the doctors say If they didn't diagnosed you with CFS and Fibromyalgia I mean like what's?

CLAUDIA:  Yeah.  I, I got a laundry list of diagnoses. I, I got Endometriosis, I got migraine, I got possible depression which I did not have, I got something called Hypogammaglobulin, which is an autoimmune disorder involving the globulins something to do with elevated Bilirubin. I mean they would pick and choose all these other little things that were obviously abnormal within the system but they never put the whole package together until this final, you know, this finally, this doctor said yes, it's CFS and Fibromyalgia. So I had a, you know, many, many different diagnoses so I felt like I was chasing all these things around but couldn't find a common element for any of them.

DAN:      Did you say you were also diagnosed with chronic Lyme?

CLAUDIA:  Yes, chronic, untreated Lyme. So in, in the late 1990s I was living in Dallas Texas and I was helping build mountain bike trail and I was bit by a tick. At that time I didn't understand that ticks

carry disease so I didn't go get checked up. But later in 2012 there was a Lyme specialist, she is a neurosurgeon actually who practiced holistic medicine who moved into my town at the time, Albuquerque New Mexico, so I went to see her and she diagnosed me with chronic Lyme and treated me for that and also for heavy metals.

DAN:      Yeah and were there able to confirm that the that the Lyme infection was gone at the end of the treatment?

CLAUDIA:  Yeah.  She retested and it was gone. The heavy metals were difficult. The lead, I had a very difficult time getting rid of lead. You know, people think that it's hokey, you know, tests for those heavy metals but one of the metals that showed high was gadolinium and I had gone for an MRI with contrast and they had used gadolinium and they told me that the half-life of it was very short and that it should have been out of my system a month before on the test and I, records just it was extremely high. So that was, to me, you know, some support that okay, this test although, it may not be absolute levels, it gives me an idea of the trending so I could see that yes, there, you know, mercury, lead, gadolinium, you know all these, calcium, were really high and now they're really low or gone.

DAN:      Yes

CLAUDIA:  And then once she cleared those with nutrition and herbs and so forth then she addressed the Lyme because she explained to me that the heavy metals form a sheath around the Lyme disease in the brain so that it causes it to be stealthy, the immune system can even see that the Lyme disease is actually there.

DAN:      And what was the treatment for the Lyme?

CLAUDIA:  It was also an herbal protocol, it’s called Byron white and she chose which ones I should do and how often.

DAN:      And how long were you doing that?

CLAUDIA:  It was extremely low doses. I did it for three years. It was a long protocol and it involved nutritional changes. I was, at that time I went gluten, dairy, sugar, and alcohol free. Yeah. Um, I drank only reverse osmosis water. She had me doing these funky green drinks, you know with kale and ginger.

DAN:      Ok, how did you feel at the end of all that?

CLAUDIA:  Much better. My brain, brain clarity was definitely improved. My energy levels were better. I would say at that point I was operating at 60% of where I had been you know prior to becoming sick. Right. So it was a huge improvement but not enough.

DAN:      Improvement, but still all the symptoms.

CLAUDIA:  Yes, all the symptoms were still there and the setbacks when you did anything.

DAN:      Yes, yeah. So took out the Lyme kept the chronic fatigue and Fibromyalgia.

CLAUDIA:  Exactly.

DAN:      And a few other diagnoses that you had as long as the arm. I think one of those did you say one of the diagnoses was also for Hashimoto's?

CLAUDIA:  Yes.

DAN:      Okay and um so um is that something that you still would say you have?

CLAUDIA:  Uh, I don't think I have Hashimoto's anymore.  I, I still take thyroid medication at this point. My, in my adolescence it started as hypothyroidism and then later changed to Hashimoto's. I don't think I have Hashimoto's because that's when it you know it flip flops. It doesn't do that anymore.

DAN:      Right

CLAUDIA:  It's stable normal. Um I don't know what would happen, I still take the medication, if I stop I don't know at this point, and it's possible that I don't have it anymore.

Dan:      Yeah interesting. We’ll talk more about that a little bit later.

Claudia:  Yeah.

DAN:      Okay, so um what would you say having CFS and Fibro was like at its worst? I mean is there a moment, I mean you mentioned that, that moment in the shower? Would you say that was your low point?

CLAUDIA:  Definitely.

DAN:      Or was there another point?

CLAUDIA:  That was the lowest point for me. I, I was bottomed out. I had nothing left. I, I was so afraid because, you know at first I was afraid because I didn't have a diagnosis then I was afraid because I had a diagnosis and basically she said you have these two things and there's nothing I can do that's more than what you're already doing .Go home and keep doing what you're doing. That was so scary.

DAN:      Yeah.

CLAUDIA:  You know trying to navigate through the medical system .Thankfully, I had my experience in the pharmaceutical and audiology fields because that helped me have the knowledge and skills to navigate with physicians. I knew how to talk to them. But you know it's a scary place to find yourself with a chronic disease and having no one help you.

DAN:      An incurable disease. Yeah,  An incurable disease you’re told.

CLAUDIA:  Yeah, and not knowing what that means for your future and you know, your spouse is looking at you like what, what did the doctor say? What are they going to do for you? Because that's the natural response. You get sick the doctors tell you what to do and that's not the case. So you're just left floating in this terrible place.

DAN:      I mean 20, really 30 years right, yeah, thirty three years. I mean how are you getting by with your life? I mean, did you even know what normal was? Did you even know how sick you were? I mean?

CLAUDIA:  No.

DAN:      You know how, how you must, you know how did it impact your life? I think it must be hard for people to understand what it's like to be sick for three decades.

CLAUDIA:  Yeah, it's hard for me to even wrap my brain around it because I would say that outwardly I'm a very optimistic very positive, I’ve been called Pollyanna. You know, I'm just that kind of person. I always try to look at the bright side of things.

DAN:      Yes

CLAUDIA:  But on the inside I was sad. I was so broken. I, I tried not to go there to that dark place because it was not helping.

DAN:      It isn’t a place you can cope with it very easily is it?

CLAUDIA:  Right, no, you can’t go there.

DAN:      And so you just don't even want to think about that stuff because, no, you just can't, you can't afford it because you're too ill.

CLAUDIA:  Right. Exactly. Um, and I've always been a helper I mean it you can see that from my fields of choice. I was an audiologist. I liked helping people so for me to be the person on the other end was extremely uncomfortable I wanted to be helping so I think that's why I found going into advocacy a natural fit. Yeah. Because I felt like no one should have to go through what I went through in terms of getting a diagnosis and then feeling so isolated and having not known what to do or where to turn and Yes, the responses from, from other people in society were awful sometimes. In fact, the caseworker for the company I work for a top five pharmaceutical company she said to me one day you know if you had cancer, this would be a lot easier. I mean I I don't even know what to do with that. It’s just terrible.

DAN:      I don't even know what to say.

CLAUDIA:  Yeah, I had no response myself.

DAN:      I’m just waiting for you to take the conversation forward because I'm feeling a bit stuck. Yeah.

CLAUDIA:  Yeah, yeah. So people don't know what to do with you.  I guess is the point I’m making.  People in society don't know what to say or do because they're used to, you got sick, you get fixed

This this whatever this ME/CFS Fibromyalgia world is, is so unknown to people. Yeah, It's terrible.

DAN:      So, so it took you 20 years to be diagnosed.

CLAUDIA:  Right. Yeah.

DAN:      And then, so then you were off work there for like 13 years is that right.

CLAUDIA:  And all that education that I spent so much energy on and money and time, you know, no work.

DAN:      And I mean you're just doing your advocacy work in in the CFS Fibromyalgia community and, and what, what what's your average day like? I mean how does how does life look after 20 years?

CLAUDIA:  Yeah, so I would also say I'm a doer another.  I'm not a person who likes to just be.

DAN:      Yeah

CLAUDIA:  Which is good and bad because I learned through the disease and recovered process that just being is actually healthy but doing was my thing and so I, I think I got into advocacy because I was looking for help for myself but through it,  I realized I could help others.  And so I took on that role. I created actually a 24 hour mountain by race that was a benefit to the CFIDS Association and I ran that for three years.  So it was really successful and I was very proud of achieving that even though I was sick, but I got to a point where I had to step away from that.

DAN:      Yeah, I was gonna say, I mean what toll did that take on you physically?

CLAUDIA:  A lot, because you know even though it was a one weekend a year it took a full year to plan. Yeah. It was quite a lot of work and but out of that came the Facebook group that I utilized for my advocacy so

I kept running that from 2007 until 2018.

DAN:      Wow so that was how big was that group?

CLAUDIA:  It was thousands of people so it was a big group. I also served on a couple of platforms. I was on a US working group to the CDC for ME/CFS and participated in the Pathways to Prevention the P2P meeting for ME/CFS at the NIH for the they created that Institute of Medicine report about the

disease in 2015. So I was pretty involved in all of that. I participated in some FDA meetings, patient centred stuff so I was pretty involved with that on a daily basis, so that kept me busy. I also became an artist during the time that I was sick.

DAN:      Yeah, yeah.

CLAUDIA:  That was a beautiful coincidence.

DAN:      Yes.

CLAUDIA:  And actually very therapeutic. I, I.

DAN:      It's difficult to become a triathlete whilst we have CFS?

CLAUDIA:  Yeah, yeah.

DAN:      I could see how that would have been a wonderful fit to give you some kind of an outlet and, and I guess help you keep some semblance of happiness because like I said you felt very sad inside and you've been robbed so much and you can’t work and you can't participate with your family and all this kind of thing, so yeah, I mean what a great, great way to have an outlet, I mean, yeah, it sounded like I was perhaps putting some words in your mouth from our previous conversation but can you tell us what, why did it affect your relationships and, and with your family and friends?

CLAUDIA:  So for my husband and I it was a huge impact because we actually started mountain biking together in 1985-86 so our entire life was surrounded with physical activity.  I was not an athlete

as a kid it wasn't until I met him that I started doing athletic activities and so we, you know we were on tennis leagues and softball teams and play volleyball and skied and had this very active lifestyle and hiked and biked and travelled a lot and my daughter does all of those things too so you know most of my family activities were physical. All of my friends are athletes so I felt so isolated and, and jealous very jealous. I tried going to events and participating as a spectator and I just I was so filled with bitterness I couldn't even go anymore.

DAN:      It's a slap in the face isn't it? Oh yeah let's celebrate your amazing achievement whilst I can't do anything ever.

 

CLAUDIA:  Yeah, Yeah.

DAN:      Whilst I get to sit here on the sidelines for the next 30 years. Yeah, It’s hard to keep cheering people on you know?

CLAUDIA:  I have to say even my husband didn't quite grasp the severe nature of the impact that it had on me.

DAN:      Yeah.

CLAUDIA:  We had conversations about that early on and I said I don't think you understand what it's like to lose the ability to do what you truly love to do. And he said well no if it happened to me, I would just find something else that I love to do. And I thought, wow, you know the words flow out so easily but it's such it.

DAN:      Try living it. It’s such a difficult path to take with grace.

DAN:      Yeah.

CLAUDIA:  And I tried to take it with grace,

DAN:      Yeah I think it sounded like you did fairly well but there's a limit to what any human can do isn't there?

CLAUDIA:  Yeah.

DAN:      And, and it appears that with ME/CFS and Fibro we love exploring those limits because just about everyone I speak to whether they've recovered or their still ill with it um I find them so inspirational. And you know, including people who haven't recovered. You know? The people who are ill with it.

CLAUDIA:  Oh yeah.

DAN:      It's like they inspire me I mean how they just manage it you know? Yeah. And because maybe when I reflect on my own years many years of illness, not compared to you, but you know?

CLAUDIA:  Yeah. You know the best years of my life one might say 7 years of illness in my 30s.

DAN:       I, I don't think I did such a good job coping with it at all. You know? Especially as the years go on you know and we go through these crazy cycles. Look uh you mentioned your treatments some of your treatments. I mean you know obviously you come across a lot of ideas a lot of theories. You’re in the advocacy world you’re in the research you know not as a researcher but you're connected to seeing a lot of research with your advocacy work.

You must have tried a lot of treatments over the years?

CLAUDIA:  I tried so many things. I tried so many and in fact you part of the answer to this it goes back to your prior question about what was my daily life like. Some of the coping mechanisms that I tried to initiate helped me I think cope but also helped me stay at a certain level with the disease as well. So some things that I did were, art, obviously I learned to do art. That was something that activated my brain but also my spirit. I also learn to play a musical instrument on my own because I

thought that that was important for my brain. I couldn't do it very often and I was terrible at it but it was good stimulation for the brain and I knew intuitively that I needed that. I did word puzzles. They were so, so difficult but I did them. And so I feel like all of those little things were helpful to me.

DAN:      To give you some semblance of still doing as opposed to just staring at a wall feeling sick.

CLAUDIA:  I was so afraid of atrophy, physical and mental atrophy that I, I wanted to keep doing things. Those things, plus I still did a lot of physical activity that most people with the disease can't do, but I didn't do them well and I didn't recover from them well so I would never recommend that.

DAN:      Yeah.

CLAUDIA:  In fact I probably it was causing more harm than good but I, I just had this fear that if I stopped moving I would die. It was just that's just how I felt.

DAN:       Did you try a lot of different sort of treatment protocols or?

CLAUDIA:  Yeah.

DAN:      I mean you must have seen a few doctors in those years?

CLAUDIA:  I tried lots of different supplements. Whatever people would tell me, try this try that. I tried I did herbal protocols. I did chiropractic, physical therapy, acupuncture, yoga, tai chi, chi-gong, and I tried steroids once or twice just low doses of them. I’m trying to think of what else I did. Movement. I, I always moved. You know, walking, you know yoga stretching whatever.

DAN:       Did the doctors try and come up with like different medications and things like that? Did you stay connected to doctor over the years? So

CLAUDIA:  Yeah. I always did, yeah, but they really didn't have anything for me. They suggested antivirals for herpes simplex but you know I only did that for treatment when I had a flare-up but those just made me feel awful anyway. No.

DAN:      So what are you what are you thinking at this stage? I mean it's been 30 years. I mean, I mean I imagine you wouldn't really, I shouldn't say, it I mean were you expecting to recover again one day?

CLAUDIA:  No. No.

DAN:      Did you think but when did you give up on the possibility of recovering your health?

CLAUDIA:  Probably because I'm so involved in advocacy and I saw the research coming through I just didn't ever feel like anything, okay, my, this is what I felt like. I felt like there was a wheel to recovery I felt like the the research that's out there, especially now there's some really good research right now.

Transcript Part 2

Dan:      What are you thinking at this stage- I mean it’s been 30 years I mean, I mean, I imagine you weren’t really, I shouldn't say, it I mean were you expecting to recover again one day? Did you think about, when did you give up on the possibility of recovering? Your health?

Claudia:  Probably because I'm so involved in advocacy and I saw the research coming through I just didn't ever feel like anything okay my, this is what I felt like, I felt like there was a wheel to recovery. I felt like the, the research that's out there, especially now there's some really good research right now, they were the spokes, right? Everybody's got a spoke that they believe is the answer but no one had the hub. There was no hub, there was no common denominator to all of it um and that's where your program came in. To me your program was clearly the hub that tied everything together. It just clicked. As soon as I read it I thought that's it, this, this make sense.

Dan:      Yeah, yeah so you feel that was the turning point or do you think a turning point happened before that?

Claudia:  No this program was definitely the turning point. I think I, I had prepared my body a little bit by doing the Lyme treatment for the three years starting in 2012

Dan:      Yeah

Claudia:  I had a better baseline. Mentally I was definitely prepared to receive the information that recovery was possible. I’d lost both my parents in a short period of time and moved to a new state so I was feeling like yeah you know I can't I can't be like this forever. I can't what happens when I get elderly and you know I saw my parents deteriorate and I thought oh god with this disease how is that gonna look.

Dan:       Claudia, I mean you know like you've been suffering for over 30 years I mean I imagine that you were just as motivated and just as unhappy we and, and unaccepting of the illness in the beginning or in the middle or many times you know? And, and I'm wondering I mean what, what changed.

Claudia:  What changed? Yeah.

Dan:      And how could you even be open-minded? I mean you had you heard of other people recovering from the illness?

Claudia:  No, no. Okay. I, well I shouldn't say no. I'd heard of one guy who claimed to have recovered from it and I investigated it and it was not solid so no. I had never I had heard of people who have recovered early on in the disease. Yeah. Maybe in the first year or two and I always thought well they probably didn't have it they probably had something else chronical fatigue maybe, the symptom not the disease chronic fatigue syndrome.


Dan:      Right

Claudia:  There's a definite difference between those two things.

Dan:      Huge difference.

Claudia:  Yeah. So no, I didn't believe recovery was possible. I wasn't seeking out recovery when this program came to me.

Dan:       But then why would you even consider it? I mean if it why get some book you know from some bald guy from Australia and it’s like a book, like you're in touch with all the research? This guy says yeah maybe it's possible to recover. I mean I mean surely that doesn't sound right.

Claudia:  Yeah. So this is how it went down. So the book, I think he requested to post the book on my Facebook group and I never posted anything that wasn't sound research. That was the premise of the whole group. So I thought well okay, I can't post this until I check it out okay, so I went to the website and I downloaded the first Discover Hope book and I read it and I thought, oh my gosh, well so far this is, this is clearly based on reality and biology and he knows the disease so I was intrigued enough to keep reading. So I, I also watched a couple of recovery videos and I could see the authenticity in those videos.

Dan:       Yes.

Claudia:   It was definitely not snake oil and I knew that.

Dan:       I mean you must have been shocked.

I mean being involved on the advocacy and, and the websites and all the stuff you're doing and then

Claudia:  Yeah.

Dan:       You found this website with recovery interviews and you're listening to them and they actually you can see that people really ill and who have really well and.

Claudia:  Yeah.

Dan:      I mean what must have, what was, what was that first video like for you and what's going on in your head?

Claudia:  You know I still had tons of scepticism because here were the thoughts in my mind. Well they were not as sick as me, or they had some slightly different version of it than I did, or they have just a different makeup than I do and so they could do this and it worked for them. I've tried everything it's not going to work for me.

Dan:      Yeah, yeah.

Claudia:  And so there was this huge barrier I had every, every excuse in the book who was coming up right but I still felt intrigued by what I was reading and hearing so I ordered the book and I started reading the Kindle version before the Amazon book arrived and all this was in one day.  This was not over period of a month. It was one day. So it was just I was flooding myself with it because I couldn't get enough and, and I told my husband when he came home and I said you won't believe this. This is phenomenal. I can't believe I haven't heard about this before and this make sense to me. And, and I think that was a point in your book where you had five steps and one of them was to align yourself with a Naturopath and this is so bizarre but that week my neurologist, just in passing had said by the way, we have a naturopath on staff here. Why don't you set up a consultation? And I had just set that up and so I felt like, this is really bizarre, but I felt like all these things were unfolding in front of me, someone was going like this, right and, and in the past I think I’ve ignored those and I’ve learned that you should never ignore those and so I am going to open myself up to this and just, just try. It doesn’t cost that much, it's, it's, it's not gonna take that long for me to just try.

Dan:      And look I'm assuming that those recovery interviews weren't of people who were in my program. They were just people who recovered in all different ways that you saw. Is that right?

Claudia:  It was a mix yeah.

Dan:      it was a mix. Yeah, yeah.

Claudia:  A mix of people.

Dan:      Because that’s how it started. It was never about the program. It was just about the people who recovered.

Claudia:  The people who recovered.

Dan:      Yeah. In whatever way, you see now?

Claudia:  You know it’s interesting because as you watch those you see common threads though.

Dan:       Yeah. I hope people see that but I'm not sure that they do.

Claudia:  I definitely did. I saw a lot of common threads and in what people try and what seemed to work.

Dan:      Yeah, okay. So okay, so you decide you're clearly thinking well this this is possible maybe for other people. I'm not sure if you're convinced for yourself. I was not. And then you decide to go into the ANS Rewire Program. Um, how, now look, again,  um you know I just wanna say to anyone listening you had one of those what I would say atypically fast recoveries  that there is a proportion of people who have these very quick recoveries. There's there are reasons behind that but I always want to say you know don't expect to have like such a fast recovery as you did.

Claudia:  Yeah I didn’t expect that.

Dan:      You know, I took somewhere between 12 and 24 months to recover. Mind you I didn't have all the resources that you did but many people I meet recover in a year, a year and a half, so it really varies you know?

Claudia:  Yeah.

Dan:      And what I would say is that it doesn't necessarily depend on how sick you are either.

Claudia:   Right, right.

Dan:      So strangely enough I often see some of the sickest people take the least time and some of the more well people actually take longer.

Claudia:   Wow.

Dan:      And it gets very complicated and it certainly is very frustrating it's very counterintuitive so yeah it's a bit all over the show. But can you tell us a little bit how long you know it took you to recover in the program and how long you've been well now?

Claudia:  So I started the program March first and by the end of May.  So, three months later I had completed the program and I thought that I was about 85% recovered but in our conversation at that point I realized I'm a hundred percent recovered! My brain just hasn't caught up with the idea.

Dan:      Right.

Claudia:  I just I hadn't experienced enough positive experiences events to you know solidify the fact that, oh my gosh, this is really, this for real.

Dan:      Yes, actually I do remember that that conversation because you said 85% of recovered. I said fantastic that's great, congratulations. And I said so you know what symptoms do you still have? What kind of things will still trigger flare-ups? And you go well I have no symptoms, nothing I do through triggers a flare-up. I go well like 85% that’s 100%. The look on your face was like yeah.

Claudia:  The brain is a little slower to react. Three months is a really short period time to catch up.

Dan:      I mean obviously very confusing time and I know you've had you know a confusing time afterwards still trying to adjust to this reality. And look I certainly relate to that. I often tell people that after (inaudible) never been a runner I actually don’t like running. I can’t run now but I did run because I could and, and I remember I was running, I don’t know how long, 10, 20 minutes running a beautiful sunny afternoon and I hadn't been ill in, in years, not in years, in in in in in you know maybe six months, I hadn't had any symptoms. I'd been able to do whatever I want no flare-ups it's all good right?

Claudia:  Yeah.

Dan:      And I tried to think of myself as a well person and I realized even whilst running and not having any symptoms I couldn't do it because you know you get so smashed up.

Claudia:  Yeah.

Dan:      So many years.

Claudia:  Right.

Dan:      It's like who you are and, and it's really hard to think of yourself as well even when you are.

Claudia:  You know, I, I don't even think I know what well is still, right?

Dan:      Yeah

Claudia:   It's difficult to embody that still.

Dan:      Yeah, yeah. So look this is obviously a lot of people who are listening who are not in the program and you know I want them to get something out to see in an interview whether they get into the program or not it's not. Like it's not about you know this is not like a promo. The interviews have always been with people doing whatever, right? And, and they're not advertisements for other programs. They’re about sharing insights and, and about them learning something. I mean first of all what would you say to them even is the program? I mean online program? I mean you surely you're supposed to get treatment from your doctor to get well? How does this make any sense?

Claudia:  Well so for me I would describe it as comprehensive first of all because I feel like it contains all of the elements necessary to attack this disease so nutrition and movement and pain management and brain training and sleep training I guess, posture, you know so all these different elements all combined and it's multilateral and, and its presented to you so that you can do it at a self-paced and it's self-paced environments so you watch the video as you can as you feel like you're able to.

Dan:      Was that important for you?

Claudia:  Yes, yeah because there's always when you're sick with ME/CFS and Fibro there's always that background fear that you know what if? What if I do too much? I'm gonna have a relapse. Or you know what if I can't pay attention long enough? And you know so yeah, that's hugely important. Okay take it as you can in small segments. Don't do it tomorrow or do it the next day, you know do it as you need to. Or go back and do it again if you have to.

Dan:      Yeah

Claudia:   Do it six times, it doesn't matter.

Dan:      You would have obviously done probably many of the things in a program already um.

Claudia:  I had, yeah.

Dan:      You know, I mean people do things like pacing their activity so that they don't get flare-ups. Yeah. People change their diet to have a healthier diet. Many people do gentle exercises like yoga. Many people do you know some mind-body things you know like some meditation. If you'd been doing all of these things I mean what do you need the program for? I mean.

Claudia:  That’s a good question. There was there were a couple of huge missing elements for me. I was already meditating but when I ramped up my meditation as recommended it really had a big impact on my nervous system. I felt it happening. In fact felt it enough that it scared me. While I was meditating sometimes I felt these strange sensations happening so it was definitely setting a foundation.

Dan:      Yeah, yeah. What kind of what kind of strange sensations?

Claudia:  It was um and I later I googled it and found out that it's pretty natural but I would go and so I was doing a 45-minute session every day and I would go through these sort of like 10 minutes cycles where I would fall deeper and deeper into my meditation and it felt like I was leaving this planet it was definite escapism. I was somewhere else and it was almost like when you're falling asleep and you have that ahh, you know that jolt?

Dan:      Yes.

Claudia:  That was sort of what it felt like. Like I went somewhere and then I realized there's like the other part of your brain says, whoa, where'd you go and then poof I'm back and oh.


Dan:      Yeah it’s literally like that isn’t it?

Claudia:  Literally, woo, but then it felt really good at the same time and so I started to just learn that I needed to just relax into it just yeah you know and it was the same principle with pain.

Dan:      Yes.

Claudia:  I needed to relax into the pain and not fight against the pain.

Dan:      Yes.

Claudia:  So yeah I learned some lessons through both of those examples for sure.

Dan:      So the program obviously encouraged you to work with other professionals if, if you need to? Yes.  You mentioned you had a neurologist, you had doctors. Did you do anything new or different with them? Did you end up working with that naturopath? Were there any other treatments that you used in adjunct with the program as the program encourages you to do, that do you think was important?

Claudia:   Yes, so a couple of things that I did some of the things I stopped doing that were helpful one was leaving advocacy before I started the program and, and this was just something that came up with in myself. I felt like I had part of me in both worlds, the sick and the healthy worlds and, and I couldn't be split like that anymore and my being he wanted to health, you know I wanted health more than anything but we all want that right? So I decided well, being over here in the sick community is not helping me achieve that goal. I kept hearing through my meditation practice what you focus on is what you become and so I decided okay I'm going to give up the advocacy and I'm going to give up contact in social media with everything having to do with the sick world all that.

Dan:      That must have been hard?

Claudia:   It was very traumatic. It was very difficult to make the decision but once I did it, it felt like a huge relief. It was, it was very liberating.

Dan:      Did you a hand like the Facebook group did you hand it over to someone else to manage or did it just stop?

Claudia:  No, I had three very helpful people who had agreed to take it over and they still run the page so that it was you know I felt comfortable that I could do that without letting people down.

Dan:      Yes, yes.

Claudia:   So yeah so now I am.

Dan:      You can wave them a quick hi now.

Claudia:   Hi guys, thank you! Okay. So that was something I gave up. I also gave up my weekly massage treatments because I  felt like they were actually at a point where they were causing me more pain and harm than they were helping I had done that for many, many years probably two decades so I stopped. So that was two things that I gave up.

Dan:      Yeah what made you give that up? Was it just you intuition?

Claudia:  I think it was because I moved I had a different massage therapist and it just didn't it didn't work well anymore.  Yeah. But I realized that once I stopped I didn't need it. It wasn't helping. So then I did a steep I did start seeing that naturopath and on my first visit I gave him your book actually because it was the timing of such. I, I just had started reading it and I said look you know I'm not pushing this on you but I just want you to be aware that this is something I'm following right now and if you and otherwise I'll listen but, but you know I'd like for you to know what I'm in. So he actually purchased the book and read the book and I think he called you. In my next visit he told me that and I was floored because I had never even been to a medical provider who had acknowledged ME/CFS before, let alone someone who would go that many extra miles. I, I was so emotional I think I cried in his office. And every time I see him he thanks me. He thanks me for helping him help his patients.

Dan:      Yeah that’s wonderful.

Claudia:  Oh yes he’s phenomenal. Yeah so he was super supportive which I think was really helpful for me but he did make some changes. He doubled my thyroid medication and you asked about that. He also added progesterone. I had a hysterectomy back when I was 38 I had endometriosis that was another one of my laundry list diagnoses.

Dan:      And, and I actually it's my firm view I understand that there are people who have endometriosis who don't have CFS and fibromyalgia but it's my firm view that, that those things are connected. Some people who have CFS and fibromyalgia the fact that they end up with these issues is due to the root cause of the illness.

Claudia:  Yeah.

Dan:      It's, it's no coincidence because people always think how I can be so unlikely to have so many different illnesses. It’s like am I cursed? And it, and it's like well it's not it's not different illnesses it's

Claudia:  Right it's, it’s just one thing.

Dan:      Just a different expression. Yeah that's right.

Claudia:  Yeah and that's what it felt like on the inside.

Dan:      Yeah and some of those things take on a life of their own you know that all needs to be addressed but yeah it's, it's all connected.

Claudia:  Yeah, yeah. So he added I was on estrogen, he added that progesterone and actually the progesterone work synergistically with the estrogen. I didn't know that it would help with the estrogen. It also helped me sleep better. Instantly I noticed I was sleeping much better and you know once you get some good sleep you start feeling better so it helped me it was a good starting point. I think he tweaked a couple of supplements too.

Dan:      Yeah.

Claudia:  Nothing dramatic. I was maybe taking five or six, and that’s it.

Dan:      Yeah. So these were like, like energy metabolism kind of.

Claudia:  Yeah vitamins D3, B12, C. Yeah, yeah that sort of thing yeah.

Dan:      So did you make all the changes at once? I mean when you first start to notice some change I mean what are you thinking?

Claudia:  So no I didn't make them all at once. I was very slow. In fact he kept asking if I wanted to take progesterone and I kept saying let's wait because the thyroid you know and the supplements and this program and I I’m all about the scientific approach, you know, change one thing and see what happens so we did it very slowly very gradually. But I would say first and foremost I noticed my sleep was improved and, and part of that was the progesterone but part of it was the sleep part of your program. I practiced good sleep hygiene which I already had done most of but I hadn't incorporated all of it. I listened to the sleep video I didn't do it very often but I did it enough that I knew what it was and binaural beats were part of my practice too so I did that at night. Let's see, so that, that word those were some of the first things I noticed and then I noticed that, and I don't remember when it was in the program, several weeks into it I think I noticed, oh my gosh I had three consecutive days where I felt good, that was new, what was that about? You know, and of course my reaction was, oh that'll never happen again but that was great yeah. And then I started noticing that in the evening I still felt like I did when I woke up in the morning. You know there wasn't that oh god I, I can barely make it through the rest of the night, you know? I still felt like I could take a shower and go out and do something! I started experimenting with doing activities in the early morning because prior to that I could not function in the morning at all. If I tried to do anything in the morning before say 10 or 11 o'clock the rest of my day felt horrible. I would get a migraine or I would have exhaustion or it would set off a full-blown relapse and you just, just going to a doctor's appointment or anything so I noticed that I could start doing that and it was okay. My days became longer that was a bonus. Yeah. Wow I have this whole block of time to do stuff now.

Dan:      What do I do? Yeah. Now obviously pain yeah pain is real you know obviously nobody is suggesting that  you’re  imagining the pain or anything like this and you know you're doing a lot of different strategies like you say ANS Rewire is multilateral. It is based on the idea though that it's not just central sensitization but there's other processes that are wrong in a body, inflammation, gut dysfunction, lots of things, and it's also talking about the fact that really what's driving all of this is the dysfunction of the autonomic nervous system. So you're doing all of these things and there's some specific things for pain but, I mean how did the pain resolve? I mean, how do you go from having pain all the time to now not having any pain? I mean yeah it did happen in one go? Was it, was it a particular strategy or treatment or how did this happen?

Transcript Part 3

Dan:      Now obviously pain yeah pain is real.

Claudia:  Yeah. Yeah.

Dan:      You know obviously nobody is suggesting that you're imagining the pain or anything like this. And you know you're doing a lot of different strategies. Like you say ANS REWIRE is multilateral. It is based on the idea though that it's not just central sensitization but there's other processes that are wrong in a body, inflammation, gut dysfunction, lots of things, and it's also talking about the fact that really what's driving all of this is the dysfunction of the autonomic nervous system. So, you're doing all of these things. And there's some specific things for pain, but I mean how did the pain resolve? I mean how do you go from having pain all the time to now not having any pain? I mean…

Claudia:  Yeah.

Dan:      Did happen in one go was it was it a particular strategy or treatment or how did this happen?

Claudia:  It was so fast. It was shockingly fast. Um, I listened to the pain management video twice, so I applied it once when I had a migraine and the migraine went away, which to me was magical, although I had a hard time replicating that. But…

Dan:      So it didn't happen like that for migraines afterwards that easily?

Claudia:  No.

Dan:      But nonetheless it had an impact on you because you were kind of going, how is this possible?

Claudia:   Yeah.

Dan:      Oh what the heck just happened, yeah?

Claudia:  And it was, what I learned in the videos was about the imagery and how powerful visualization really is and how um the same mechanisms occur in the brain when you visualize something as it does when you actually do that thing and that blew my mind.

Dan:      Well you're obviously very research-based.

Claudia:  And I have a degree in psychology.

Dan:      You have a degree in psychology but you’re doing a lot of research in the MECFS and Fibro advocacy world. I mean you’re talking about imagery? I mean hello, like…

Claudia:  I know.

Dan:      How did you connect that? Now obviously I do share some research in the program like for people listening you know you know they are for instance people in hospitals with severe burn victims who use virtual reality, in order to help them cope with their pain and reduce their pain levels.

Claudia:  Right.

Dan:      So you saw, what was it that research that convinced you, hey, there can be some things I can do? Or was it the wacky experience with the migraine that kind of did it for you?

Claudia:  I think the research had the biggest impact on me.

Dan:      Right.

Claudia:  Because I felt like okay, this is solid this is tried and true. There is evidence to base this on. Once I felt comfortable with that then I would apply it and then it worked, and I realized okay, this is actually really, I have the power right here. Yeah. Okay.

Dan:      Yeah and so you obviously had pain all over your body right, not just the migraines?

Claudia:  Yes.

Dan:      So you know here you are you've got pain all over your body, every day I assume or?

Claudia:  Every day. Every day.

Dan:      Okay, so then one day there's less pain or one day how, what did you do? How did it happen? Sorry to press you, but you know people wanna know?

Claudia:   You know I think it must have happened one day, uh but it took me a couple of, two three days to realize that hmmm, I don't have pain. Alright. And so that was a shock. And again I thought okay, it's a one-off. It's going to come back and it never did. It never came back.

Dan:      It never came back at all?

Claudia:  No. No and, and in fact I as I began ramping up my activity level and doing more physical things the way that I felt was different now. I if I went to the gym and did weightlifting I would feel the normal soreness that you feel from weightlifting, and in a day or two it was gone.

Dan:      Right.

Claudia:  So it was completely changed from how I was before.

Dan:      And so do you did you put that down to something specific or was it just you're not sure because you were doing all the different things in the program?

Claudia:  Oh I think it was the ANS rewire portion of the program for sure.

Dan:      Yes. So the brain training portion of ANS Rewiring.

Claudia:  Yes. Definitely.

Dan:      Right. Right. Okay.

Claudia:  And it's embarrassing because I'd like I said I have a degree in psychology but it was many years ago and when I learned psychology of the brain we were taught that you know you're born with a fixed brain. You can't form new synapses you can't form new connections. It is what it is and we of course know now that's not true at all. We have plasticity in the brain and, and Western medicine is beginning to utilize that, as is sports medicine and so you know you actually

Dan:      Like cochlear implants.

Claudia:  Cochlear implants. Exactly.

Dan:      Deaf people can hear again that couldn't happen if your brain wasn't plastic. and yeah I mean when Dr. Merzenich first  showed his research he had to he had to use acceptable language the suggestion  that it was the brain was plastic and, and then when he finally came out  right and said it I mean he had a really hard time in the research community and Yea. You know in the end you know he became the father of neuroplasticity and, and you know we got cochlear implants from it and all these wonderful things. But change is sometimes difficult to, to accept but there's a lot of deaf people who can hear now.  Yes, who really appreciate it.

Claudia:  Yes, so true. And it's funny as an audiologist I would tell people if you're getting a hearing loss get hearing aids now don't wait because that portion of your cortex that you know utilizes the auditory information it will atrophy over time. You know you need to stimulate it, keep stimulating it because it will respond to that. And I never thought that's plasticity I never put that together until this program and then I thought, oh my gosh, that's what this is.  This is this is real stuff. It's not woo woo. You know. Yeah and no one is saying that because you're doing this that the disease is psychological. It is completely physiological but there are coping strategies that occur that feed into the physiology of the disease and it's those that you address. So you know it, it all makes sense.

Dan:      That's right. I mean, we, in order to address the retraining of the brain I mean we look at physical strategies, we look at physiological strategies, and we look at psychological strategies because of course the brain, the way you know connects to a heartbeat, and your, your stomach, and your, your body, and our hands and your thoughts, I mean that it's all connected to the brain so we're just using whatever mechanism we can.

Claudia:  Right.

Dan:      And there's other mechanisms.

Claudia:  Yeah.

D:There's actually many other mechanisms and that's why people recover in so many different ways.

Claudia:  Right. I just remembered something too - one of the key things that I grasped regarding pain was to remember that pain is simply another stimulus just like what we see and what we hear and it tastes. It's just another one of those senses, right? And, and so I had to just remind myself, this is, don't judge this. Don’t place of judgment or negativity on it, which is so easy to do with pain.

Dan:      Well I'm going, that’s nice of you to say that but I mean like you know, part of me wants to say well you know get real. I mean like, how can you say that? I mean when you're suffering from pain for like 30 years?

Claudia:  Yeah.

Dan:      How can you change this? I mean this was just not like very difficult for you? Yeah. Or what allowed you to do that?

Claudia:  it's super challenging but I remember this woman who actually has CFS she's an author and she writes these Buddhist inspired books she said that she would, when she was feeling very sick she would just lay on the couch and make observations without judgment. And one of them was just describe the scene. Okay I see a middle-aged woman lying on the couch with her eyes closed. And you know continuing on, and so I think I incorporated some of that to just make observations about the situation without the emotional judgment.

Dan:      Yeah which is really what's a lot of brain training in ANS Rewiring is about. Like, like the whole meditation tracks and everything to give you that foundation. So it's wonderful to hear how you put that across.

Transcript Part 4

Dan:      If we um, if we talk um, specific to the people who are not in the program and um try and give them some understanding uh you know of some of the things that, that you've uh, that you've done here and in the program. Um I mean we spoken about how we did the meditation and you know changed your physical activity levels in a certain way and uh you're doing some of these brain training techniques and some of this meditation techniques I mean like we said earlier these are all things that you've kind of already been doing, yeah?

Claudia:  Mm hmm.

Dan:      I mean how could they understand that it could be different now? I mean um you know, I'm just wondering how would you try and explain it to them what you were doing? And I wonder almost is there anything you can share about how they can change their approach even if they don't go into the program you know that can perhaps make a difference ? These are big questions you know to ask.

Claudia:  Yeah. It's a big question but I think there are answers. I, I think that for me the meditation was paramount.

Dan:      Yeah.

Claudia:  That 45 minutes of silent meditation was paramount to me. The breathing techniques as part of the meditation, breathing and, and allowing myself to do meditation without feeling like you know because some people try meditation. I've had people say, oh I tried meditation it didn't work and it's kind of laughable to me because it's a practice to do it forever. You don't try it and fail right? It isn't about stopping the brain from thinking it's about sometimes examining what it is that you're thinking about, but it's also about just going inward, returning to the breath.  It's just thinking about your own breathing pattern to allow your body to settle down. We need that, especially with this disease that we need our autonomic nervous system to just settle down. So to me that was huge part of this. Setting the platform.

Dan:      Yeah. And it was around your understanding how it was connected to the root issue and why it as helpful that motivated you to commit to the, to practice.

Claudia:  Yes.

Dan:      Yeah.

Claudia:  Um, and there was something in the program where you talked about that the body, the body wants to find homeostasis. The body is good at finding homeostasis. That stuck with me. And so everything that I did I kept in mind that idea that I what I'm doing, my actions are only augmenting the body's process in order for it to find homeostasis. I'm just helping it along. In fact I printed that statement out about the supplements that I take that you talked about in your program, that you know these are, I’m only taking these to help my body find its own homeostasis. I printed that verbiage out and I put it everywhere in my house where I had Supplements, and every time I went to take them I would read that out loud, because I felt like it was important for those words to be heard by my ears to go into my brain, and my brain to say okay body we're gonna do this. We’re gonna make this happen. Yeah.

Dan:      You sound like you really focused on doing some good self-care.

Claudia:  Definitely. Oh some…

Dan:       Was that hard to do I mean after, I don't know, you know words like self-loathing come up often with people when their experiences illness for a long time.

Claudia:  Yeah.

Dan:       And, and you know what an awful thing to say, you know?

Claudia:  Yeah, I mean yeah I was pretty self-deprecating I was constantly if not just to myself in the mirror, to other people I would put myself down minimize my abilities and um, I think it was a coping mechanism too. You know if I say at first you can't say it. You can't beat me to it, right?

Dan:      That's right. Um yeah so yeah it's like an excuse isn't it it's like it's yeah saying an excuse .Yeah, yeah I'm not up to scratch, but this is how it is.

Claudia:  Right.

Dan:      You know?

Claudia:  Yeah, yeah. You know, but after that many years of living it you do believe it, and it is true at some point. It does feel true. So I, I think I self-care was definitely important. You know I had I think I said my I lost both parents and so I spent three years taking care of both of my parents, their money, their household um while I was sick. After the Lyme treatment so I was a little bit better. I was on call 24/7 for three years. If the phone rang I would freak out. I had PTSD from that. No doubt. So um after that after they passed and, and I moved then this program came up I decided my life is going to be about me for however long it takes me to get through this program, because I am no good to anybody if I can't do this.  I have to do this.

Dan:      Yeah. Good for you.  Must have felt a minute weird to be kind and loving to suddenly I mean did you feel weird?

Claudia:  Yeah. It is really difficult um because in my career choices I'm a giving person too. I am the person people call when they have a problem. My neighbor just said to me you're so easy to talk to I feel like I can tell you anything. And that's who I am so is really challenging for me to give myself a hug for a change. And, and say no to people and pick and um choose what kinds of things I want to focus on right now. I want to focus on myself I want to be selfish. I said those words to my husband. I want to be selfish for a little while.

Dan:       And feel good about it.

Claudia:  Good, good.

Dan:      Yeah. Another question um well let me ask you what do you think was the most important part of your recovery?  You mentioned the meditation would you said that was it?

Claudia:  Hmm.

Dan:      Or was it some of the things we were just talking about then?

Claudia:  No, I think the meditation set the stage for me to be a good receptacle of the rest of the program. I think that the ANS rewiring was the key for me.

Dan:      The rewiring. Okay. Fantastic.

Claudia:  Yeah definitely. Yeah. That was the missing the big missing element from what I had been doing I think.  Yeah.

Dan:      How important do you think, well you know with all the different things, I mean the rewiring you know it's kind of pervasive. It puts all the strategies into context.

Claudia:  Mm-hmm.

Dan:      So you’re already doing exercise, pacing, uh you know all these different things, uh supplements, right, but now it's like the rewiring and the program gives distinctions on all of those things which can be rewiring distinctions but there can be other distinctions too can't there?

Claudia:  Yes.

Dan:      Did you did you think that that was a big part of, did you, I mean I don't want to put words in your mouth, but I'm wondering did you find as you were listening the program that those were like  lightbulb moments? Did you find when you made those little adjustment and those little distinctions in your approach was that big deal or was it more the big chunks that mattered?

Claudia:  No, I think rewiring actually taught me a lot about myself, about my process for coping with things just in general, mmm and, and it wasn't really who I wanted to be, so it showed me that, which was that was very helpful. Um it, it helped me learn how to better approach other parts of my life, especially activities. Um I can now go to an activity but like I said with joy and excitement and not have all of those other thoughts come up.

Dan:      The trepidation and all that.

Claudia:  You know, like yeah,  I went on a hike recently with some friends and at the parking lot, it was a long drive to get there about an hour and a half, and I got out of the car and was gathering my things and I realized this is the first time I've gone on an activity in decades but the only feeling I'm having right now is sure excitement. I am excited like a little kid.

Dan:      Isn’t that awesome?

Claudia:  Yeah, yeah and I haven’t experienced that in years.

Dan:      Were there any other sort of moment since you've recovered where you’ve kind of gone wow! This is like, you know? This is really happening!

Claudia:  All the time! Yeah. And there’s stupid times. Like I said at the grocery store or at the dentist today.

Dan:      Yeah

Claudia:  you, you said to me the other day, boy you don't really know how that's gonna go because you have a new body now, yeah. And I was thinking that at the dentist today because they were asking me questions about my previous dental care and how I responded so forth and I said to myself well this is a whole new body. I don't know how I'm gonna respond to anything anymore. That right. You know things are gonna be different. Absolutely. Everything’s going to be different.

Dan:       Absolutely. Um let me ask you a bit of a an important question and maybe not so straightforward. You know some people for various reasons, you know I always say to people you know be kind to yourself you know there’s this there’s this whole balance between responsibility versus self-blame. You know?

Claudia:  Um hm.

Dan:      There is about determination and then there's about you know being overzealous, you know?  This is all such a balancing act and you know there's some people who, like yourself, who are very fast responders, who have a very rapid recovery even after long periods, even after severe illness, even after being bit bound, you know?

Claudia:  Right.

Dan:      And then some people really just takes longer, yeah? You know, and recover maybe in 12 to 18 months, sometimes even a little longer. And then there's some people who just don't do so well at all.

Claudia:  Yeah.

Dan:      Now do you have any thoughts or opinions of what is it? I mean you've seen people's comments in the program and you've been working you know over ten years in the in the community and advocacy. I mean what do you think is the difference between the people who respond fast in the program and the people who respond slower and the people who don't respond at all?

Claudia:  Well, you know I've had a few conversations with people about the program, people who are either trying it or considering trying it, and people who have not tried it and didn't know about it, and it's interesting to me to hear the language that people use with ME/CFS and Fibromyalgia. And that was one of the things that I changed also that I haven't mentioned. There is a specific language used in the community of chronic disease and um I think it holds us back, and, and I don't think we even realize the language we use but it's a lot of focus on the can't, and shouldn't, and the what if, and need to have to, those kinds of verbiages, and I think those can be very harmful. Um so I think one of the things that I initiated myself was to watch my language and change my the way I speak and, and as I talk to people about the program or, or recovery even, I get a lot of pushback, a lot of  scepticism, a lot of well I can't because. Um I can't because of all these various reasons and, and I think it's so easy we just get sucked into this life of sick. It's, it's a pit and, and it's you become, it defines us, and we're there. I have a very good friend who was diagnosed with a mass multiple sclerosis at the same time that I was diagnosed and I, I feel like we both went into advocacy and it became our definition of who we are. And I think that's good but it can be very damaging too. And I think all of us do that. So that's one thing I noticed. I also know some people go into this recovery mindset with a very analytical mind, a little too analytical like they're gonna pick it all apart before they can even start. I got I'm gonna look at, watch all the videos before I apply it and then I'll go back and you know start slow and I'm gonna take a bunch of notes. I didn't do that. I took the I highlighted the book a little bit, and I wrote a few notes, and I did the homework assignments, but I definitely didn't go into it thinking I'm gonna memorize this whole thing and, I didn't even want to understand some of it.

Dan:      Yeah.

Claudia:  Some of it I thought, I can't understand what he's saying right now but I don't think I have to. I don't think it's important. I think that's too much pressure, Um, and you repeat so much and you rephrase so much when it's important that I knew that I'd get it eventually.

Dan:      Yeah.

Claudia:  So I think that that approach is helpful and I think that's something I learned maybe in college or graduate school maybe probably graduate school because there's such a data dump and there's not enough time to do everything, so you have to just start to learn oh okay, I'll, I'll grab that thing and I'll grab that thing and those other things may come later. You know?

Dan:      Yeah look I think that is wonderful, wonderful advice and very, very intuitive. Thank you for sharing that Claudia. Certainly I can see that what people want to know, know and sometimes I ask them what is it that you need to know and they go actually I do already know it I just need to do it.

Claudia:  Yeah.

Dan:      They don't often make that until I asked a question and if they know and, and then sometimes never get to that point because they never had that conversation with me.

Claudia:  Wow.

Dan:      And so they’re still stuck in I have to learn it all, and I don't know, and they don't do it, you know?

Claudia:  Yeah, yeah, yeah.  They get paralysed.

Dan:       Yeah, what’s that saying, paralysis through analysis and, and I think we can all get caught up. It does become our identity our outlook you know? it's,  it's not, I don't think, I don’t want people to hear there's people who are in the program or they’re not in the program it's not, or this is who you are, it's not blaming you, it's not you fault. Yeah.

Claudia:  No.

Dan:      I was the same way. You know?

Claudia:  Yeah, Right.

Dan:      We can all be like that okay? And, and you found a way not, and you, I'm sure it's been the same way too.

Claudia:  Oh definitely.

Dan:      But you found a way.  You made a choice. This is our power. We can make a choice. You made a choice once you understood why, right, to change how you look, to change your language and just

say I'm moving forward, and this is why surprisingly I find the people sometimes who are the illest, or the most down and out, sometimes do the best uh because there is that shift through desperation will do it.

Claudia:  Yeah, desperation is a good word.

Dan:      It, it’s a bit like um you know I had a back problem after, after CFS and yeah I'm supposed to exercises but what are the exercises gonna do? I’ve got problems with my discs, right? and bla bla bla bla bla and we will have this discussion and then I got so bad I, I couldn't move I couldn't get off the floor I was like screaming in agony you know and, and it's like and then I supposed to go and do Pilates, I'm like you exercise and I’m like really, really that's gonna do it? But then there came to this point where there was such desperation that I started doing it.  I didn't like doing it. I didn't enjoy it. It was painful. I've struggled and I did it, but then suddenly I was doing it every day, not everyday like, but I was doing it every time I was supposed to do it, because now I felt I had to do it. Like yeah, I don't do this, I don't want to look back and say oh well, you know, did you do it absolutely, and are you sure it didn't work, you know? No. I wanted to be able to say, say yes I did do it, and even if I wanted to proof that it doesn't work.

Claudia:  Right.

Dan:      You know?

Claudia:  Yeah. It doesn't matter.

Dan:      it doesn’t matter, but at least do it, you know? And, and I've actually met people um who've recovered from CFS and fibromyalgia who went to prove that something doesn't work, but not in a way of doing it to sabotage themselves, they actually did do it fully. It wasn’t ANS Rewire, it was their recovery strategies. But they did it and they recovered you know?

Claudia:  That’s great. I love that.

Dan:      And so it doesn't matter what your reason is but it's we’ve gotta find a way to, to shift our focus. And I love through your whole discussion about the worlds; the sick world, the healthy world, and to focus. And it's not that it's in your head or positive thinking will make you well and you know but it's like it's like anything hard you want to achieve in life you're not gonna do it focusing on the negative outcome, right?

Claudia:  Yeah, yeah, yeah. Where you put your energy is where you where you go.

Dan:      Yeah you're not gonna,  you know get great grades to make it in go to college or something like that if we keep thinking I have a look I can't learn I'm not good at getting good grades, bla bla bla bla bla, you got talk it up, you know?

Claudia:  Right.

Dan:      You're not going to go do well in sport if you keep saying yeah but you know I'm not good runner.  I'm not a good runner. I can't run. The way my legs are they’re too short. I’ve got problems with my knees. You know, you're going to say yeah I can do it. You got to find a way around it, you know? Yeah.

Claudia:  Right.

Dan:      And I think the psychological side, you know what we're doing here is we're doing the most amazing thing, yeah? Incredible. I believe that you are one of the most inspiration people I will ever speak to in my life and I'm lucky I get to speak to many people like that, yes, because I meet many people who recover, but it doesn't take it away from how amazing it is, and how rare that is, and it's not rare as in or you are a person, you know, that is, no one else could be like that. No. Right. But it's like you've stepped up to the plate. You know you've stepped up to the plate.

Claudia:  Yeah.

Dan:      And you've done it, you know?

Claudia:  Yeah.

Dan:      And my message is we can all step up to the plate.

Claudia:  Yeah. We can.

Dan:       Yeah. And I think sometimes we need something more. And I find there's two reasons why people want to recover. One is to get away from their suffering, they’re suffering. Their suffering, their suffering.  There's so much and people just don't get how bad it. That's a great motivator and sometimes when that is bad enough that really pushes us forward. But I find that we also need a go-to goal. You know we need something, a reason to do it.

Claudia:  Yeah. Yeah.

Dan:      You know? Do you think that was your, that that you had that, that there was a big go-to reason for you?

Claudia:  Yeah, I think my parents’ death was a catalyst for me. I, I just felt my mortality was on the front burner and I just couldn't fathom that. I'm gonna be 60 in a year and a half, and I kept thinking, not even a year and half. I kept thinking I don't want to be an elderly person with this disease. I can't do this for another 30 years. I can't do this for another ten years. I just can’t. Um, my whole life has gone by and, and I've been a sick person. I don’t want that. I need to change this.

Dan:      Yeah.

Claudia:  I, I just felt this urgency. I can't explain it any further. And, and I have to say I was I have been practicing a lot of different sort of spiritual things lately too over the last say ten years, listening to a lot of different teachers, um spiritual teachers and things related to meditation and Buddhism and that sort of motivational style and talking about going inward and learning about yourself more and I think all of that really had a big impact on the opening up to the idea of recovery, but also being able to accept where I was with my disease, because I had not done that before. I was, I thought I was accepting the fact that I had this disease, this chronic illness, but I was fighting against it all the time, and the push/crash cycle was evidence that I was not accepting it.

Dan:      Mm hmm.

Claudia:  So I think that was a key component too, was being able to sit down and say look, this is where I am right now. It sucks big time, but this is the reality of my life and I don't like it. It’s not what I want, obviously, because I keep pushing, right?

Dan:      Yeah.

Claudia:  The fact that I’m pushing is demonstrating the fact that I want to bust through the door. I don't like this door.

Dan:      But do you say acceptance, like you, you said acceptance. What does that mean? I mean, does it mean that you, you give in? Does it mean you just, what does it mean?

Claudia:  It means I understand and I see clearly that this is my starting point. Yeah. It’s my jumping-off point.

Dan:      Yeah.

Claudia:  And I will not fight against it but I take the steps necessary to, to make a change.

Dan:      So it's about respecting it isn't it?

Claudia:  Definitely. Most definitely.

Dan:      Respect your current reality, connect with it, yeah, sure but change how you relate to it, yeah, and have a view that it will change going forward.

Claudia:  You know what now that you say it, it was a lot like the labelling of pain without the emotion. I, it's just another sensation. The same. It’s, it's it is the reality, I'm not going to judge, it I'm not gonna describe it I'm not going to place negativity with that, it just is what it is it is. It is where I am.

Dan:      Is there anything I forgot to ask, anything else you wanted to say?

Claudia:  I am just so excited I feel like I feel like, wow this was right with me this whole time and I didn't know it? Oh my gosh. But there were necessary steps that I had to take and paths I had to follow to get here.

Dan:      Yeah.

Claudia:  Just like there was to get sick, right?

Dan:      Yeah.

Claudia:  And, and so the unravelling of it is beautiful and, and I can't wait to see where I am a year from now because it's wide open and I just it's wonderful. I'm so excited.

Dan:      Yeah.

Claudia:  Um, every day is great. Fantastic. And for people to say how are you and for me to actually say I feel great is, it's wonderful every time!

Dan:      Yes, yes and that look what's, what's a parting message you have to anyone listening to the interview today?

Claudia:  Gosh I’d say put down your weapons. Put down your shields. Open up. Consider the option of recovery that it's viable and listen to some recovery videos. Try it, just try it. Read the book. If it makes sense go forward.

Dan:      Yeah. I want to add to that. You know there's many paths. You don't have to do ANS Rewire, but open yourself up to the possibility that there was a path for you.

Claudia:  Yeah. Yeah.

Dan:      And if ANS Rewire can be part of that, great, but if it's another path, also great. Any path. Come tell

me all about it. And I love sharing all the stories, you know?

Claudia:  Yeah.

Dan:      Just be open to the idea of even life after, right?

Claudia:  Absolutely.  And I just want to thank you Dan. I can't say thank you enough for, I don't know how you did it, really, honestly. I think about how sick you must have been and, and with no outside support and you just must be a brilliant mind because you, you nailed it. And I don't know how you managed. You incorporate it, and the more are the more I experience out there the more I realize, ah, he might have pulled some of that, and might have pulled some of that and all these different components that you put together to make this program. It’s magnificent. You're changing people's lives for the better and I think that’s just wonderful and I appreciate you..

Dan:      Thank you very much for saying that. That's very kind and I guess my answer would be that I was probably one of those sceptical people that you were mentioning earlier but got some doubts themselves.

Claudia:  I guess that’s a good driver.

Dan:      It was a good driver. I literally didn't want to ever do anything unless it made sense of why and, and that drove me to abandon all these ideas out there, and just I needed to find something that made sense and explained it and pulled it all together and without that I wasn't prepared to do anything ever again.

Claudia:  Well it’s amazing to me, and you motivate me and inspire me and I hope I can find my niche soon.  

Dan:      I'm sure you, I think you're on your way already. So look, at congratulations. Thank you. It's really awesome to see you have your life back and thank you for sharing your story and inspiring others.

Claudia:  Thanks for the opportunity.

Dan:      You’re welcome.

If you are interested, you can also watch her ANS REWIRE testimonial here:

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Linda j

Thank you for the great recovery video which had new insights for me. I found the comment about being the most well sick person interesting as I feel the same too and haven’t had any colds or vomiting bugs since becoming sick and I also have kids of school age. 😀 xx

Claudia L Goodell

Linda I’m glad something I said resonated with someone else! I wish you the best on your journey.

Jesse Hartigan

Thank you, Claudia, for sharing your story. It was very inspirational to me and also gave me a few key insights that I aim to use for my own recovery. Your points about (a) changing your identity from a sick to a well person, and thus leaving advocacy work, was very useful for me to reflect on; the other key factor I took away was (b) how you approached the program – just getting into it, doing the homework, focussing on the rewiring and the meditation, but not getting too bogged down in the details. Thanks and Warm regards, Jesse.

Claudia Goodell

Hi Jesse,

I’m so glad my words and experience are helping you in your recovery process. There are so many perspectives shared my those who have recovered that make a difference in someone else’s recovery. I’m so grateful to Dan for these candid interviews of people who used various methods to recovery. These insights are priceless. Someday someone will be watching yours!

Terry

These videos are so inspiring. Not getting bogged down with details really rang my bell. I’m 62 and have bwen challenged with cfs since 2003-16 years. So, good job, Claudia! My main obstacle is getting part way into a program and then stopping,like you mentioned, so this was encouraging!

Claudia L Goodell

Go Terry. Keep going. Start again if you paused. Pause if you need to, but keep trying. You can do this. Completing the symptom questionnaire was motivating for me because if I just thought about my status I wasn’t able to guage things accurately. When I put it into the survey it was clear that things were improving. That provides more hope to keep going. You got this!

Riikka

Hello, I have a question for Claudia. How did you treated your chronic Lyme? I have it too and I am so greatful if I can find some cure for it. I suppouse that I can’t recover from me/cfs if I don’t recover from Lyme disease first.

Claudia

Hi Rikka, I think Dan could speak to the necessity to do a separate recovery from Lyme prior to an ME/CFS recovery program. That’s just how it worked out for me. I saw a neurosurgeon in Albuquerque, New Mexico who specializes in holistic medicine. She made a clinical diagnosis based on history of untreated tick bite, symptoms and labs. She follows ILADS protocol and treated me with an herbal protocol called Byron White Formulas preceded by treatment for heavy metal toxicity using Byron White as well. I followed her recommendations for 3 years, 2012 through 2015. It wasn’t until 2017… Read more »

Riikka

Thank you for answering, Dan. I listened Kikis story again. There was a lot I had forgotten so thank you for reminding me and thanks to Kiki for sharing! I think I have to do what I can here I live. I can´t do exactly same things but there are always something… We all have our own path to follow but it helps when you can hear others stories of recovery.

Riikka

Thank you for answering me Caludia. I think I have to find something here in Finland, maybe I can´t find exactly same things as you but may be something similary. And thank you so much for sharing your story!

Joy

is there somewhere where i can READt= the story rather than listen ? i am not an auditory learner more a visual

Malin

Thank you for sharing your story. I have also had an gradual onset of fibromyalgia and me/cfs but only got my diagnoses a few months ago. Both me and my doctor think I have had it since my late teens, I’m 36 today. It is nice to hear someone talk about fms/cfs/me with hasn’t had the classic sudden onset and severe symptoms with being bedbound. The fact that I didn’t have that resulted in me not really believing in me having these illnesses in the beginning, that I was not sick enough. However know I know better. Looking back over… Read more »

Helen

I wanted to skip from the 1st to the 2nd video, but it played both at the same time! It is too rambling.

Janet

Thank you for this inspiring conversation! How wonderful it was to hear two people honestly & joyfully sharing their journeys of suffering & healing. I am very moved. Loved it!

Luka

Dear Claudia and Dan
Thank you very much for such inspiring and insightful interview.
With such amaizing testemonials,and with a such higly precise scientific/expirience based programme, I find that recovery is not only possible, but,obligatory for each of us who are suffering this condition.

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