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

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 12, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    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.
  2. Cort

    Cort Phoenix Rising Founder

    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...
  3. Recovery Soon

    Recovery Soon Senior Member


    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.

    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.

    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 :)

    Of course!
  4. My way

    My way

    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!
  5. Cort

    Cort Phoenix Rising Founder

    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.
  6. jenbooks

    jenbooks Guest

    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.
  7. Enid

    Enid Senior Member

    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.
  8. Cort

    Cort Phoenix Rising Founder

    Enid how did you improve?
  9. BEG

    BEG Senior Member

    Southeast US
    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.
  10. oipemowell


    Portland, Oregon
    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. :D
  11. Cort

    Cort Phoenix Rising Founder

    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...
  12. Wayne

    Wayne Senior Member

    Ashland, Oregon
    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.
  13. kermit frogsquire

    kermit frogsquire

    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!
    slysaint likes this.
  14. sleepy237

    sleepy237 Senior Member

    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:thumbsup:
  15. svetoslav80

    svetoslav80 Senior Member

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


    the city
    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.

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