Article: My ME/CFS Story: from the Amygdala Retraining On by Cort Johnson

You can view the page at http://forums.aboutmecfs.org/content.php?290-My-ME-CFS-Story-from-the-Amygdala-Retraining-on-by-cort-Johnson

 

Thanks Cort, your story has been really thought provoking for me. I had a large amount of anxiety when i relapsed over a year ago now and found that like you i was always the wired but tired type. You explianed this so well, because for me this is always a difficult thing to explain, most people seem to think it means just being anxious - but its clearly not. I also have MCS which i have had to varying degrees all my life, worse now though in this relapse.

I started meditating about a year ago and it has really been the most empowering thing i could have done for myself. I am much calmer now and have an increased quality of life. I am still sick though and unable to work etc, but i can now go to school events with my kids etc without getting really ill as i seem to tolerate the everyday stresses a bit better.

Yesterday i attended a Zen Buddhist Sangha, set up by some local people in our very rural community and i had such a lovely time. It was the first non family "social" occassion i have been to since my relapse and it was just so wonderful to feel so calm and happy and accepted amongst strangers. I realised i could start to build a life WITH M.E. I dont have to keep waiting to get better to start my life again. With mindfullness i can see that this is my life and it has a lot of good in it.

That's so encouraging Justy. I gave up meditation because of back pain and I want to give it a go again.

I want to point out that if you look at the symptoms of anxiety and CFS there is some overlap, of course, just as there is with depression - but there is alot that is different. I don't have 'dread', for instance, and nowhere either in depression or anxiety is post-exertional malaise ever mentioned. People with both can use exercise to help them with their problems - and I mean real exercise! The problem for them, I guess, is that they see no point in it.

Something is driving the system for people who are in the wired and tired subset and I think many can blunt that to some extent. It may not leave them well if you but when you are ill any increased functionality is very welcome; hence your appreciation of being able to attend events at your kids school - an everyday occurrence for almost anyone else but a significant event for you.

 

All so true Cort - thank you.

I chose my forum name 'PictureofHealth' to make sure I was focused on what I wanted and it would make me think of health. Now you have reminded me that it is the inner heart feeling too, that could benefit from a positive focus every minute of the day. Perhaps I will rename myself 'Pleasure'! - that brings a warm inner glow and light, and would certainly bring a smile to the heart of anyone I met - 'Hi, what's your name?' = instant warmth. (After all, some people are called 'Joy').

I had been practising Transcendental meditation for a decade by the time I got ill, and considered myself pretty adept at it. Although I found a profound peace from doing it morning and night, I was not able to carry the benefits into my day to day working life. And once I got ill, although I was already v practised at it, I was unable to physically sustain sitting and the meditation. I tried to do it lying down but what my body needed overwhelmingly was profound sleep bordering on coma.

The same with Tai Chi - I had already been enjoying this for years, but became physically unable to stand upright and do the gentle movements once I got ill. To me this has always been about hyperstimulation of the nervous system and immune system. I too did the Lightning Process, Amygdala retraining (bought Ashok's home DVD set) as the hyperstimulation and perhaps hyper adrenaline model made so much sense to me - but in the end, although I had great benefits, it did not touch my physical condition and was not remotely curative.
I have also previously tried a number of other healing modalities including Theta healing, Perrin technique (lymphatic clearing), osteopathy, herbs, etc etc etc etc etc.

My current approach is Ho'oponopono, a traditional Hawaiian healing system: "I love you, I'm sorry, please forgive me, Thank you." Didn't someone always tell us that these were magic words???!!!! (Joe Vitale and Dr Hew Len wrote a book "Zero Limits" about this practice). I love this approach and it has brought a profound sense of feeling connected to parts of me I thought I could not communicate with. In fact, I love it!

It reminds me of the Japanese scientist (?Dr Emoto), who bottled water in a number of different containers and labelled them with different words such as 'Love', 'Joy', 'Thank you' and negative words too. The water which had been bombarded with damaging emotions and thoughts looked polluted and dead, whereas, astonishingly, the other water, in the 'I Love You', Joy, 'Thankyou' and other positively labelled containers produced the most beautiful crystals - all of which he photographed and can be seen on his website.

Bearing this in mind, I will continue with Ho'oponopono. I feel good on mental and emotional levels, yet my body has remained, so far, 'unrepentant'!!!! Perhaps the body is the densest level of existence and the hardest to reach - but I hope its possible eventually. "I love you" sounds like a great vibrational medicine for me and is perhaps, ironically, the one I have always resisted.

So yes, thank you Cort - I can relate to all your wise, wise words and observations.

For me your story shows both the promise and limits of this type of work..... In the abscence of a cure what is left? Improving ones quality of life as best one can...

 

nowhere either in depression or anxiety is post-exertional malaise ever mentioned.

Bingo.

In the abscence of a cure what is left? Improving ones quality of life as best one can...

I was just at a neurologist recently and told him that meditation was my best treatment for CFS. His horrified response was "That's NOT treatment!" Sadly, lifestyle management is all we've got. Good news is it can dramatically change your relationship to the suffering.

Now I'm looking into the Buddha's Brain Book

I went to a workshop with Rick Hanson a few weeks ago at the NY Insight Meditation Center. He said what dramatically boosted his own practice was the conscious focusing on increasing happy states on mind. With meditation I often get into the mindfulness aspects, but don't cultivate the pleasurable. This practice (called Metta in Buddhism) actually rewires the brain and dramatically increases our happiness in life. This whole idea dovetails perfectly with what you were saying.

After that it just seemed CFS sent irritations my way constantly...little eruptions..big eruptions....the peace was gone.....Even if I can't regain the other stuff - the physical grace and well being - and all the cognitive functioning - I do think I can regain some of the peace... I don't think it's necessary that that is gone. It's a real test for sure....at least some grace and peace came naturally then - now it's a function of generating it or clearing a place for it to arrive.....

Maybe we were the people who needed or wanted, for some reason - a real test this time around..

I have thought this for years..........

So have I. When I began my meditation practice I thought for years that I would undertake any hardship to maximize my spiritual growth. Little did I know that this challenge would be put to the test in a ridiculously extreme manner called CFS. I know it is all leading to some amazing growth. I just hope I'll get to understand it in THIS lifetime, after being cured, and then walking the planet like a healthy Ghandi for the rest of my days (unless of course, Mr. Kite comes back and start spouting crazy Govt. theories again- which might break my peace a little

I hope you have a good experience with this seminal figure and I hope we hear about it

Of course!

 

Thanks Cort for sharing with all of us your personal experiences. It woke up my memory too, and I am pleased to see that so many of our lives are so similar. I have seen myself in everything you have said…

As Rivka, “good to read your experiences and learn more about you (even though mind-body stuff is not for me)”. As many of us, I tried it, convinced myself I could do more and more, more than I should, and broke into pieces for a long while.

Stress is a BIG problem. I know that if I could calm down my system I would feel a lot better, at least happier. Rhodiola has been a good help.

Great article, thanks again!

 

I went to a workshop with Rick Hanson a few weeks ago at the NY Insight Meditation Center. He said what dramatically boosted his own practice was the conscious focusing on increasing happy states on mind. With meditation I often get into the mindfulness aspects, but don't cultivate the pleasurable. This practice (called Metta in Buddhism) actually rewires the brain and dramatically increases our happiness in life. This whole idea dovetails perfectly with what you were saying.

I have been wondering if cultivating the pleasurable is a critical part of meditation for people with CFS that is largely missing for many people. Focusing on the breath only can be difficult when your body is in such turmoil. Focusing on the breath and cultivating happiness or just cultivating happiness or joy - which can seem nonsenical but which does work - may be a more effective way to go for CFS. (???)

Thanks for informing me about metta.

 

A friend of mine sings this refrain of a song by the Incredible String Band:

Dust to diamonds, water to wine
Happy happy happy all the time time time!

He is paraplegic. I liked this and used it myself.

 

Thank you so much again Cort and as to how much these things aid along the way. which of course they can do enormously at certain stages repairing CNS/brain damage (always felt in the area of basic functions/ emotions - whatever structure controls) Now I'm able to recognise people again I'm just enjoying all the research findings pinpointing the virals that have the capacity to cross the blood brain barrier and cause this devastation.

 

Enid how did you improve?

 

WOW, Cort! So that's how you achieve such a steadfast calmness, peacefulness, and acceptance of the people and environment around you. One would have to be clueless not to realize that possessing these qualities will release energy for other things.

Thanks for sharing your amazing journey through the uncharted and most challenging road of life with ME/CFS.

 

If a person had the flu, would they be expected to exercise??? NO!! And yet trying to exercise within your "energy envelope" is a challenge always. What seems easy to do for normal people looks herculean to me, and I wonder how do they do that? I do remember in college, before illness, that I COULD do alot!!! And in high heels all day to boot! But you cant lay in bed and atrophy...I tried that and got sicker back in 89 when they told me to get lots of rest.

Another thing that your story triggered Cort, was that many of us get some good results with a supplement or diet, and then it disappears. I messed around with thyroid for 4 years, determined to get the dose right, cuz I had glimpes of tremendous vitality and sunshine in my brain...I even ran up two flights of stairs to my 3rd story apt. Usually I my legs are in near cramping pain on a regular day by the time Im up to the top. I thot...see!!!! There's nothing wrong with my muscles, I just need my hormones right. WRONG. That hope was a heavy loss.

Then I tried low dose naltrexone...1 1/2 weeks made me better...could walk alot. Then it turned on me and gave me horrid symptoms.

I think this sick complex body system is indeed complex. One med or supplement will not shift the whole system.

I could not work my mind so much as you, Cort. I have at times, indeed, when I couldnt get out of bed at all. Im glad Paxil, Klonopin and Vicodin tame my body symptoms or Id be in a nut house.

Well, if XMRV is the culprit driving the sick system and if we can tolerate drugs to control it, hopefully the body will line up. ??? I hope.

Thanks for sharing more and of course, thanks for your tireless work for PWC's. At least your illness doesnt slow down your journalism, etc.

 

Another thing that your story triggered Cort, was that many of us get some good results with a supplement or diet, and then it disappears. I messed around with thyroid for 4 years, determined to get the dose right, cuz I had glimpes of tremendous vitality and sunshine in my brain...I even ran up two flights of stairs to my 3rd story apt.

I know someone with a very similar experience; thyroid worked - REALLY WELL - once and never again....You can't say it was placebo because she's tried everything under the sun and never got that response. She tried for years to tinker with thyroid and it just never worked out. Our bodies are so complex!

You LDN experience is really close to my experiences with treatments.

Exercise is like walking a tight rope for me; some is helpful, doing nothing is a recipe for disaster as is doing very much.........

I think is gotta be something like XMRV sitting up in the CNS messing around...

 

Fearless woman's brain reveals key to phobias

Though I haven't explored amygdala training much, I do have this interesting phenomena of experiencing undue agitation when I see movement in my peripheral vision, something that I suspect is related to my amygdala. It's actually more problematic when I'm more in a relaxed state and at home. My partner can start walking in the room, and even though I know it's her and she's off to do something else, my whole body tenses up.

I really haven't read much this thread or followed it closely at all, but ran into an interesting article that may be somewhat relevant and provide an interesting perspective. This article made me wonder whether we should consider an "amygdalaectomy" of sorts???

Fearless woman's brain reveals key to phobias

Here's the introductory paragraph

The 44-year-old mother of three, referred to in the journal Current Biology as SM, has a rare psychological impairment due to a genetic disease called lipoid proteinosis that left holes where her amygdala — the brain’s danger detector — would normally reside.
​

 

Ah what a surprise, another plug for Ashok Gupta, the UK based conman that has tried to open a string of dating agencies, property firms and now targets ME patients.

His therapy is completely different is it? Funny that since it consists of standing on a cheap piece of paper and saying STOP! Rather like that other conartist, Phil Parker - of the lightning process.

I know someone that spent over a year unable to leave the house as a result of Guptas program, why because they really did have ME and not a mental disorder.

From reading the above story and the repeated improvements with Zinc, transfer factor and a whole host of other treatments that have no effect on true ME, it is clear that the more likely explanation is that you were well but were in fear of actually being well. Your ME had gone, you merely had a mental illness left over, which is understandable if you had been ill 10 years. You would have got the same benefit - as you atested to any wacky therapy. I find it incredulous that there are yet more plugs for conmen like Gupta and Parker.

For anyone looking into this therapy

* Stand on some coloured paper,
* say STOP,
* You dont have to do your symptoms.
* Think some relaxing thoughts,
* tell yourself you are wonderful.
* Hey presto you are cured - there thats for free.

I can report that the Office of Fair Trading is currently investigating these types of sellers for the most serious breaches of consumer law. The penality of which is 2 years in prison. Please be ware and do not believe success stories written by one off individuals on message boards!

 

Thanks for sharing Cort, can relate to a lot, there is a man called Ashok K Jayne, he has meditation tracks available for download on amazon and has one of the most profound effects with his voice and ability to enable us to stop thoughts. Thought I would put his name up here as he is under recognised and I found his track to be amazing. Keep going keeping on going great progress

 

Hey I didn't know so many people with CFS also do Vipassana. I do it too.

 

I know zinc helps boost testosterone, but never seen it in liquid form. CoQ10 seems to help me too. This looks interesting because in some anxiety disorders (which I have), an over-active amygdala is believed to be responsible.