I’m currently in Brisbane visiting my father’s family, motivated by my aunty’s 80th Birthday. Technically, it’s six months now since I began the Gupta Amygdala Retraining programme for Chronic Fatigue Syndrome. So I think it’s time for a review.

I say “technically”, because I only really stuck to the programme for the first four of those six months. After that, I pretty much stopped doing the physical Stop-Stop-Stop business; although I kept doing it in my head every now and then. The other thing I had difficulty with doing was taking six months off life to just recover.

After about a month on the programme, a friend of mine with CFS recommended an acting course that he had found tremendously helpful in unlocking the emotional repression that he believed was at the core of his Chronic Fatigue. His background story was so similar to mine, and the course sounded so amazing, that I just didn’t want to wait until I’d done six months on the Gupta program before starting the classes.

Starting acting classes took all my remaining energy… and then some. I also had a couple of other stressors at the time: I was president of a Toastmasters club (what was I thinking?) where I learned to delegate primarily because I was too ill to actually do anything myself. And I was still attempting to unsuccessfully promote my first book. Which, by the way, is getting rave reviews… but few actual sales! I found the emotional rollercoaster of pushing something unsuccessfully really harsh, so I’ve pretty much sidelined it… at least for the time being.

After a few months on Gupta’s programme, I became pretty skeptical of his Amygdala Hypothesis, and particularly of the ability of the NLP business to break the stress response. I’m currently reading The Emotional Brain, by Joseph Ledoux; the neuroscientist whose work Ashok Gupta based his programme on. It’s a fascinating read, very relevant  to what I want to talk about in my public speaking. I grew up in a family where emotions are so strongly suppressed that they’re pretty much taboo, and this has had a tremendously damaging effect on my psyche. So to read this book about the emotional mechanisms hard-wired into my brain is very validating. Ledoux’s key research interest is the emotion of fear specifically, so it talks a lot about the amygdala and the physiological stress response.

I can see how the stress response could become a learned conditioned response, and how the Stop-Stop-Stop technique is intended to break the association. But it’s a bit of a stretch to jump from Ledoux’s research to Gupta’s theory; I’m not sure if Ledoux would go along with it. I’d been under chronic emotional stress for some time before succumbing to CFS, but even if the stress response does become active constantly, I can’t see how this alone can produce flu-like symptoms. It would surely play havoc with my immune system though, and that could allow for a persistent infection.

My main complaint with the Gupta programme is that it’s just so goddam boring. All that Stop-Stop-Stop and meditation; frankly, I’d rather be out living my life. But then it’s really CFS that’s boring rather than the recovery programme. I seem to have fewer days stuck in bed now than I did when I started the programme, and I don’t feel overwhelmed with anxiety so much. I’m functioning well enough that I think the distraction of getting back to what I actually want to do with my life is more productive than walking around saying “Stop Stop Stop!”. Whether it’s Gupta that got me there, or the acting class, or the vitamins, or the rest, or the non-aerobic exercise, or just the sheer passage of time, or some combination of the above… I’m really not sure. I remember a few months ago I was deeply fearful of being ill indefinitely; now I’m not so worried about that. I just feel like I have a mild cold, and a bit zoned out. But that’s quite liveable, so if it never went away, I’d cope.

I’m basically backing off on Gupta now. I’m going to spend less time watching the DVD’s, reading the forums, and probably less posting to this blog. My plan was to spend 6 months recovering, and this blog’s purpose was to reach out to other sufferers seeking support to stay motivated. It mostly worked, and the 6 months is now over.

Chronic Fatigue has felt like a huge distraction for me from what I actually want to be doing with my life. It’s been like driving with the handbrake on; but the brakes have slowly been coming off lately, and now I’m keen to move forward. However, it has forced me to focus more because I could no longer do all the fun stuff I used to enjoy and had to come up with something else. I have enough energy to practise my public speaking, get to an acting class or two a week, plus some practise sessions; and get back to that autobiographical book that I put on hold when I became ill. The book is meant to be inspiring, and I couldn’t see how I could be inspiring when I was stuck in bed most of the time so I put it on hold for two years, but now I’d rather like to finish it.

Focusing on my future gives me less time to focus on feeling ill. And I don’t feel so ill now anyway… I’m hoping the trend continues. If there’s one thing Gupta got right, it’s that the psychological and emotional effects of Chronic Fatigue are enormous. They’re the thing that actually causes the suffering, and we need to pay more attention to these emotional aspects. Getting emotional support from people has been absolutely crucial for me. Sadly my emotional-brick-wall family don’t qualify, but that’s just more material for what I want to speak about down the track.

I’m considering writing a book about my experience with Chronic Fatigue. There was quite a bit of drama in the first 2 years before this blog started, and I think the story itself would help inspire other sufferers. If you think you’d buy a copy at say $10, drop me a comment and I’m sure I’ll be more motivated to put the time into writing it.

My plan now is to rebuild my home page on WordPress, and start blogging there on a more regular basis. CFS and this blog has helped me learn how to do that better. It’s an ill wind that brings no good, as they say. Then I want to get out to more speaking venues, develop a keynote speech, and get this public speaking career thing happening. Having a plan for the future definitely makes me feel more positive, and less anxious. Anxiety is one of the things I want to speak about, so perhaps CFS has taught me a valuable lesson in there somewhere that I can use.

Meanwhile, let me know how y’all are doing!

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Graham Stoney

I'm a guy in his early 50's, recovering from Chronic Fatigue Syndrome and Severe Obstructive Sleep Apnea.

15 Comments

Shane · February 12, 2021 at 4:47 PM

Hi Graham, hope you are feeling better these days. I’m on the Goldie, not too far from Brissy.

Any updates on what has helped you?

I personally found kambo frog medicine helped me quite a bit. I’m not recommending it as it is very challenging to go through. But after 28 years of severe suffering, as in most of that time functioning around 5 to 15%, it has had the most profound healing effect on me. Now I function between 15 and 30%, although still occassionally crash down to 5% from time to time.

I just came across the GP and found your post. Stop-stop-stop sounds similar to the Lightning Process of “STOP!” blah blah…. I didn’t get much value from that program and honestly couldn’t understand how people with severe CFS could even do it. Seems to me there are likely multiple illnesses going on that are presenting in similar ways. Wish we could get better diagnostic tools to categorise them.

I have found that small amounts of medically prescribed dexamphetamine help me function. The psych basically said my brain is in a sort of ADD type state, so the dex revs it up so I can focus and get more energy. I know its not healthy stuff and I hate taking it, but you know when you’ve got things to do like get food and such it becomes a necessary evil.

I’ve also found cetain forms of kinesiology, Neuro Emotional Technique, SpinalFlow and HHS have been helpful too in resetting my nervous system and getting it back to homeostasis. Last year I was able to do a small amount of yoga and found that helpful too.

At 28 years and counting I am not sure I will ever recover; I have accepted that. But I will keep trying and hopefully one day will find the magical elixir that will release me from this prison and give me back the remainder of this life.

Be well, Shane.

    Graham Stoney · February 12, 2021 at 6:23 PM

    Hi Shane. The turning point for me was having a polysomnograph which showed that I have severe obstructive sleep apnea, and I believe that’s what was causing my fatigue. My focus is now on getting that treated, and my health is finally recovering. If you haven’t had a polysomnograph to test for a sleep disorder, I highly recommend it; I wish I’d done it years ago instead of wasting 10+ years on all the CFS treatments I tried, none of which worked because I just can’t breathe while I’m asleep. Cheers, Graham

Nicole Lelema · June 30, 2014 at 10:16 AM

This is one of the most unprofessional postings I have read. If you are involved in all the activities you say you are, you couldn’t be sick. It’s totally unprofessional and doesn’t help any of us who are looking for an intelligent feedback. Nothing on this post is intelligent, and it certainly isn’t fair in evaluating the Gupta Therapy. Nothing is going to help you with your not serious attempts, then you have the audacity to comment on it!!
That’s how this ‘you’ll’ is doing. This illness is hard enough without this crazy thinking.

    Graham · June 30, 2014 at 10:37 AM

    Hey Nicole. Well you sound kind of angry; which isn’t surprising given that CFS affects the emotional centre of the brain. But I’m just relaying my experiences here; whether they’re intelligent or professional isn’t for me to judge. I don’t know what’s going on for you, but I hear a lot of criticism in your feedback. The world is just a mirror to us, so I’m wondering what it is about your own thinking that’s unintelligent, unprofessional and otherwise not serving you. Cheers, Graham

      Jessica · January 25, 2015 at 12:55 AM

      Yes, having an active life doesn’t mean you can’t be sick…. I have got fibromyalgia and I am able to do more and more activities, even a cycling trip of 2.500 km, but I still suffer from pain and severe tiredness…

        Gmc · February 17, 2016 at 5:28 PM

        It sounds like you have some degree of sickness, Jessica. But, while I don’f know for sure, that doesn’t sound like it could possibly be Chronic illness – or long term, systemic, Chronic extremely incapacitating sickness, which Chronic Fatigue Syndrome is.

        A 2,500 km cycle? With a chronic physical illness? I know there are some people can work some and exercise at times, with these kinds of chronic illenss. But I doubt there would be a single doctor who would diagnose anyone who can do a 2,500 km cycle as chronically, physically ill.

        I know fibromyalgia is different as it can have milder forms than the Chronic forms. But the article is about CF Syndrome which has very strict definitions about being a chronic, really disabling indeed, physical illness. Your illness, it seems, cannot even compare in ways which make any sense with the effects of CFS.

          Sally · August 12, 2016 at 7:55 AM

          I have had fibromyalgia for nearly 16 years, although it could be CFF as the fatigue is the worst of my symptoms. They are very similar.
          Some days it’s an effort to walk up my stairs but I can hike and walk long distances. I get into the forest and it’s like a switch goes on and I have energy although it’s definitely an effort. I call it my medicine. My point is that people like Jessica can be chronically ill and still achieve remarkable things. Being in nature is incredibly healing.
          A lot of it is about attitude. Jessica has a great attitude and, like me, is not content to just sit back and let the illness stop her doing what she loves. Jessica should be admired, not criticised! Good on her for pushing herself.
          I can only speak for myself, not Jessica, but when I push myself physically it’s certainly more of an effort that it used to be and my recovery time is a lot slower but I can do it because of my mental determination. Yet there is no doubt I have a chronic illness. GMC, everybody is different and responds to a chronic illness differently. Who are you to judge?!

    Carol · August 20, 2018 at 1:16 AM

    I completely agree with you Nicole! I wouldn’t buy any book from this person. He might be sick, but definitely not with CFS.

      Graham · August 27, 2018 at 12:16 PM

      I feel angry when I see people comment on other people’s health without even bothering to talk them. I’d prefer you to stick to talking about your own experience if you want to leave a comment here. Thanks, Graham

Sophy Wynne · June 20, 2014 at 1:08 AM

I recently completed doing 6 months of the Gupta program as a friend had tried it and was improving. I didn’t find it at all helpful and it has possibly made me worse, I wasn’t going to comment but have found getting my refund very difficult and thought others should be aware. I received an email to say they had refunded my money via PayPal to my email address, I replied to say I didn’t have a PayPal account and had paid by my card, they said everyone paid via PayPal account and that’s the only way they can refund. I duly opened a PayPal account to get my money, only to discover that being a new customer means I cannot access the money for 3 weeks and PayPal have charged me a fee for using them. So once I actually get my money it will be considerably less than the original fee paid due to postage both ways and the PayPal fee, this may sound petty but when all you have to live on is the meagre benefits these days then every penny counts.

    Graham · June 20, 2014 at 7:34 PM

    Hey Sophy,

    Sorry to hear the gupta programme didn’t work for you; I can’t say it cured me in the end either… I quit doing stop-stop-stop after about 4 months, but I did find the stress management aspects of it useful. Bummer about the refund hassles. I hope you find something that works for you.

    Cheers,
    Graham

rogelio · October 25, 2012 at 9:05 AM

most chemicals smells make me sick for examp. plastics, gasoline, perfumes, creams, ect…. i wanna try the gupta programme but i have few resources, i don’t wanna waste my money, please i need your help, my life is a mess, i need your advice on the best therapy for multiple chemical sensitivity

    Graham · December 2, 2012 at 9:26 AM

    I don’t have MCS symptoms as far as I can tell, so I’m not in a good place to advise you. Gupta believes that it’s related to the nervous system and that his program could help you. I can’t say it’s healed me, but the theory behind it might be correct. Good luck! Graham

Lee Lee · July 12, 2010 at 8:38 AM

Hey!! It’s great news that you are feeling well enough to resume a semi normal life 🙂 I hope the rest of the year goes well for you. Regarding writing a book about CFS I’d be very very cautious ….. I know Alister Lynch and Laine Beachly (is that her name?) wrote books after they had it and got better and I also know that the CFS community ripped shreds off of them. Basically, what life was like for them with CFS was not like how it is for many many of us and lots people assumed they had either been misdiagosed or else had a very mild version of CFS and no one who is to sick to even get to the toilet wants advice from someone who was still able to go our for coffee or do light exercise ….. it’s totally invalidating!

Anyway thats just my opinion 🙂
Take care Graham.

    Graham · July 12, 2010 at 10:42 AM

    Thanks Lee. I appreciate the support. Interesting point about the book too… I’ll keep it in mind. I am aware that my dose of CFS has been relatively mild… though even relatively mild is still rather devestating.

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