The Next Step? Ashok Gupta at the IACFS/ME Conference

May 9, 2009

Posted by Cort Johnson

Ashok Gupta recovered from chronic fatigue syndrome (ME/CFS) patient almost ten years ago. His research into his condition lead him to develop a new theory of the disease and novel techniques for treating it. He believes that the fear center of the brain – the amygdala – has become chronically activated – causing the body to over-respond to virtually every stimulus presented to it. Over time this results in exhaustion, hyper-sensitivity, increased pain, etc. After treating patients for about five years in his clinic in London he created a DVD program patients can use to guide themselve through his program.

The cognitive behavoral therapy studies presented at the IACFS/ME Conference did not have good results. Ashok Gupta’s – admittedly using quite primitive statistics – did. Are therapies utilizing neurolinguistic programming (NLP) the next step in the mind/body efforts to tame this disease? Ashok Gupta thinks so and he was busy trying to get funding for a study that he believes will show that the program can make a difference in this disease.

I’ve used the Amygdala Retraining techniques and found them over time to be very helpful and so was glad to sit down with Ashok at the IACFS/ME Conference to ask him more about it. Happily he came across in person as the same relaxed and grounded person (with the same tie!) I’d seen on his DVD’s.

How did you get started on this?

I had gone to two CFS units that formally diagnosed what I had as CFS. I went through all the blood tests, etc., etc. I could feel that my body was full of adrenaline or whatever you want to call it – that I was on edge. I was sitting at home I could feel that some response was going on in my body – some stress response – and when I was speaking to somebody or put into a mildly stressful environment I could feel my heart start pumping but it wasn’t anxiety per se – the feeling was distinct to anxiety. I’d always had some anxiety in my life but nothing had been comparable to this complete exhaustion. There was something unique happening. So I started looking into the stress response and anxiety disorders.

I looked into the latest research on what causes severe anxiety – the answer was the amygdala. I read Joseph Ledoux’s work and said to myself you know this stuff is exactly what’s going on in my body and I looked at all the CFS literature and put all that together as well and said there is a really obvious mechanism.

I challenge anyone to read Joseph Ledoux’s work and not see parallels with CFS. He looks at the HPA axis and says the HPA axis is simply a response unit of the Amygdala.

The Amygdala is the fear center of the brain – is research on the Amygdala oriented towards panic disorders and things of that ilk?

Originally I would say that research on the amygdala was focused on anxiety and panic disorders but now it’s being implicated in depression and autism and addictions. The Amygdala is essentially our protection system to help us respond to many sorts of emotional or physical stressors. But my question is what if the Amygdala is also responding to a viral threat? Or an immune threat or a potential allergen?

The issue with chronic fatigue syndrome is that the Amygdala can get it wrong and over respond.

In ME/CFS (chronic fatigue syndrome) sometimes it’s like you don’t have control over the body; the body seems anxious in and of itself. The connection between anxiety disorder and ME/CFS is an intriguing one. I know someone who had an anxiety disorder for a time. At one point he was in his car outside his house and he couldn’t get out of the car – his body would not obey him – he was actually frozen in place. ME/CFS, to me anyway, seems like you’re caught in a slow freeze – the body seems less stuck but it’s stuck all the time – like you’re driving around with your parking brake left on. Dr. Baraniuk believes that the filtering mechanisms of the brain aren’t working and the brain is being flooded with too much information and this is impeding everything.

That’s what I’m saying; the Amygdala magnifies the signals from the body and from the outside world. You ask a CFS patient – how do you feel when you’re put in stressful situation? And they’ll tell you they feel much more stressed than before when they didn’t have CFS. It’s because the amygdala is magnifying every mental, physical and emotional stressor that that person is experiencing.

They’re saying the exact same things in Fibromyalgia – that the pain signals are being magnified in the brain in fibromyalgia. The most obvious ‘guy’, the most obvious ‘person’ that could be doing this is the Amygdala. I’m flabbergasted that no one is looking into this idea.

When the Amygdala is responding it compromises the functioning of the immune system. We know when we’re stressed our immune systems are less effective. People are talking about oxidative stress about autonomic nervous system problems, over sympathetic nervous system arousal, chronic arousal…the only thing that can cause that is a conditioning event; you have a stress, you have a virus, you put them together – and you have a chronic period of post-viral fatigue which causes a trauma to the Amygdala. I think of these as Amygdala conditioned syndromes.

Is it possible that the gateways that are controlling the flow of information to the brain are broken and the Amygdala is responding all the time; i.e. the Amygdala has not chronically gotten turned on it’s just responding all the time to this constant overflow of information?

Consider if you’re in a dangerous situation; your eyesight is sharper, your smelling is sharper, your senses are enhanced so that the Amygdala can take in more critical information to give you a better chance at survival. So the question for me is who opened the floodgates?

In CFS the body still thinks it’s being stuck in illness mode – it feels like it’s still being attacked. If you ask patients they’ll tell you that they feel like their body is under attack. They like their bodies are constantly overreacting; that they don’t feel right in their skin. They do feel anxious but it’s not a normal kind of anxiety; it’s a sense of a lack of control over their bodies.

My hypothesis does not say that you’re worried about your body. My hypothesis says that at the periphery of consciousness there will be a continuous cycle may be going on that you may only have fleeting glimpses of but those fleeting glimpses are an opportunity to control the Amygdala.

Researchers have shown so much interest in the HPA axis in ME/CFS and it plays a big role in the stress response but you believe they’re kind of missing the forest for the trees.

I believe that the Amygdala is the master gland when it comes to stress responses, anxiety response and oxidative stress. It’s the gland that makes the decision whether the body should be stimulated or aroused. It then sends a signal to the hypothalamus (the ‘H” in HPA) – so the hypothalamus is the servant of the Amygdala.

If you talk to people who are doing anxiety research and fear research they’re all talking about the Amygdala whereas ten years ago they were talking about the hypothalamus ,so in those particular areas they’ve moved on and realized that the Amygdala is one of the most important glands in the brain and yet in CFS research we seem to be mostly ignoring it.

In my mind the reason for that is simply that the research on the Amygdala is something that is fairly new.

Where did your interest in Neurolinguistic Reprogramming begin?

I could that what was going on in my body was completely unconscious – I had no control over it – which is one thing that makes me think this is not a psychological but an neurological illness. But I thought that there must be a way that I might be able to consciously control this reaction. So I trained in NLP, I learned meditation, breathing techniques, etc. because I’d known that patients had found some relief from meditation. A lot of patients have tried meditation and relaxation techniques and it helps them.

I became healthy using these techniques and set up a clinic. It took me a few years to figure out what works. In early 2006 I began to work on the DVD program. I didn’t do that until I’d gotten my techniques as good as they could be. I would estimate that my program has relevance – will help – 80-85% of the CFS population.

What about people who are really ill – bed bound – can they benefit?

Yes. There are people who’ve been bed bound who have improved on the program enough so that they have a normal level of functioning; they can’t exercise but they can travel, etc. Their process can take longer. I had an e-mail from a lady who’d had CFS for 30 years and had never walked up the stairs and she was pretty much bed bound and now she can go on day trips, she can go up and down the stairs – she can’t exercise yet but she can do many things that she wasn’t been able to do before.

People who are at 40-50% functioning can actually get to the point where they can get to fully exercise but to get to that level probably takes them from 12-18 months. In my mind this can’t be some sort of cognitive reprocessing – I believe there’s actually something very deep and profound going on in the bodies of these people.

People are suspicious of any behavioral approach to ME/CFS…… What has the response been to the program.

The response has been very good generally. Obviously there are some people who, unless it’s a drug or surgery, will dismiss what I’m doing because what they’ll say is that what I’m doing is psychological. CFS is not psychological but neurological. The Amygdala retraining techniques involves neurological not psychological techniques.

This isn’t a semantic trick. The AR is redesigned to retrain the brain – to rewire the brain neurologically. We’re talking about structural changes in the brain based on these techniques – and that makes it a neurological technique. This separation between the brain and body, in my opinion, is completely ridiculous.

Cognitive behavioral therapy is like using a fire extinguisher on a warehouse blaze; it might be able to help in some situations but it’s not getting to the root. I can understand why some people are naturally suspicious (about my technique) but all I can say is that these are neurological techniques.

Sleep is obviously a big challenge in ME/CFS patients and you recommend doing relaxation exercises before going to sleep. You also recommend something called Indian Head Massages. What are those?

I find Indian head massages so powerful because you’re increasing blood flow to the brain and stimulating the muscles and the nerves. Before you go to sleep try to massage the front of the head, the side of the head and the back of the head and you’ll have better sleep at night. If a person can get their nervous system calmed down in the last two hours before sleep it means that they’re have more restorative sleep. The last two hours before sleep are incredibly important for Amygdala retraining.

What does the Amygdala Retraining bring to the table that you don’t find in meditation and other mindfulness activities?

The Neural Linguistic Programming (NLP) is the most important bit. Many patients already have tried a bit of relaxation/meditation etc, but it does not make them recover necessarily. The NLP retrains, the meditation and breathing is simply there to support and accelerate the retraining.

Are you 100% recovered?

Yes. The thing I have to do is to make sure that I eat healthily, that I meditate, that I get regular exercise and that I monitor my stress levels.

If you speak to patients that have recovered and they will tell you that if they encounter something stressful in their lives that their symptoms come back. The Amygdala is vulnerable. Even after you’ve recovered from CFS there is a period of time; maybe six months to a year where you have to make sure that you are not stressing yourself out. That doesn’t mean escaping from the world – that means controlling the stress response.

I take common sense measures to maintain my health and yes, I’m completely healthy – I can do anything a healthy person can do.

Patient Reports on the Amygdala Retraining Process / The Amygdala Retraining Process on Prohealth / Ashok Gupta’s Amygdala Retraining Website

The IACFS/ME Conference Treatment Edition: Part I / Part II

 

 

40 comments

{ 40 comments… read them below or add one }

cort May 10, 2009 at 6:12 am

I absolutely do recommend it. I’ve been doing it on and off for over a year now. Honestly it hasn’t been easy for me to figure out how to do it in a way that really works for me – I think I’m a slow learner in this area – but it’s really starting to pay off.

Three things have kept me going over this time. One I kept getting flashes of its power – which would then fade – but still kept me intrigued and engaged. Second it introduced me to a variety of mind/body techniques that I’ve found helpful. Third the explanation absolutely fits my experience; I’m in the kind of aroused, anxious, wired but tired subset – I feel like there’s this little motor running all the time – which is what the theory proposes.

I don’t always do the program as stated – I often take pieces of it and use them – I find the process of ‘looking’ in a mindful way at what’s going on very helpful. I can exercise a little more without consequence – no huge breakthroughs there – but definitely increased well-being and I think the benefits will continue to grow.

I think its worth the investment. When the forums get up on the website I’ll open a section on it – so people on the program can assist each other with it. I think that will be very helpful.

Reply

Anita Patton May 11, 2009 at 9:27 am

I believe that you must combine these type of therapies with medical assistance. This type of recommending treatment not properly done in clinical trials, etc., can have negative affects on a very ill population who will do anything to try and recover even slightly. All the brain training in the world doesn’t lower my viral load, decrease inflammation, or make it easier to absorb nutrients in my gut system. It seems like putting the cart before the horse. There has to be a joint effort in science, neurology, and coping techniques of life and living with a chronic illness that has been poorly misunderstood and not supported by our federal government.

Reply

cort May 11, 2009 at 2:45 pm

Of course use medical assistance as well _ I have certainly benefited from both – but there is a tie-in between these types of treatments and the physiological problems found in ME/CFS; it’s the stress response system.

Tests have consistently shown that our ‘fight or flight’ system (sympathetic nervous system) is activated and our ‘rest and digest’ system (parasympathetic) is underactivated. These types of stress reduction techniques can help to rebalance those two systems. Since both those systems also influence the immune system doing them can also help to improve your immune functioning as well – thus aiding whatever treatments you’re using for that and perhaps helping to reduce viral loads. Its intriguing as well that the immune problem most associated with ME/CFS – the natural killer cells – is also most effected by the stress response system.

I look at these kinds of treatments as important prongs of a total treatment regimen.

Reply

Peg Fiels September 12, 2012 at 3:07 pm

Cort
Please tell me what the Amygdala training is composed of.
I have done NLP and probably would need more. I have helped myself from being an invalid and legally blind to seeing 20/12 and walking now but that has taken me many years and I am still not where I want to be.
Any info would be appreciated
Peg Fields
502 817 7949

Mette Marie Andersen May 11, 2009 at 9:58 am

I always feel the need for a word of caution when people claim they have had ME/CFS and have been cured or have cured themselves. How on earth do they know what they have had ? We still don’t have a reliable biochemical diagnostic test for ME/CFS and anyone can claim to have sufferred from this disease in the past. Most known virus- and bacteria infections will cause fatigue in some people and anyone who has overcome a simple infection can claim to having been cured from ME/CFS. That is why we need a proper test.

Reply

kaninkoker May 11, 2009 at 1:48 pm

Hi Cort
You must simply not belive in those who tells you that they are 100% recovered
by Ashok Gupta ? This is a mental technics. You can compare this Gupta with the Scinetlology-church dianetic-cours. It humbug. In Europe we have something called LP (Lightning Process) and I tell you. This is brainwashing programs and has nothing to do with adeqat thretmans to ME/CFS. Belive me! 100% recovered means that you are able to work 100% and have a lot of time with your family ect right?
Forget it! I know many people that have tried this mental technics but it really does not work. ME/CFS is an immune-defect! Never forget.

Reply

kaninkoker May 11, 2009 at 4:16 pm

cort wrote:
“Tests have consistently shown that our ‘fight or flight’ system (sympathetic nervous system) is activated and our ‘rest and digest’ system (parasympathetic) is underactivated.”

So far there has been 6 known research reports focus on the levels of adrenalin in ME/CFS sufferers. Just one of this research reports shown that adrenalin level was a little bit higher than normal. The 5 others shown lower or normal levels of adrenalin. This has to do with the “fight or flight” system.

I tell you. Both, Lighning Process, dianetics, Gupta all have in commen to put their finger on this “fight or flight” as the main problem, but it has nothing to do with the pathofysiology of ME/CFS!
The Lightning Process was introdused as the “cure” for ME/CFS som years ago. It made comletly hyseria.! At the beginning the cost was $1000 for a 3 days “training program”. Than it cost $3000 over “the night”…. I tell you. it became a game of pyramide! A lot of people wanted to make money, and big money! Oh yes people was so healty. We called`em LP-”healty” because they could only tell us how enormos healty they were. Not 100% but 150% healty. None of them was capable to turn back to their jobs or live a normal life like realy healty people do… so this was hysteria!

Please do not make the same mistake as we did in scandianvian and particulary Norway, some years ago. This LP “game” started in UK and the psykiatriclobby really loved it, in both in UK and Norway. They said: “what did we tell you, its all in you mind”. So the moral is, “Don`t feed the trolls”

LP hurt the ME/CFS case very badly both political and a lot of MD turn their back to ME/CFS sufferers in these to contries. I think every ME sufferer do some kind of CBT or Gubta every day. Of course we have to ballance our activity every day or we will become sicker. But do we really want more CBT or do we want some adequat threatments? Cort: go to youtube and look for the WPI films I upploaded 4 weeks ago. Surch for “real progress in ME/CFS ” (PS. part 1 and 2.)

I want to thank you so much for your wonderful job for those who suffer from ME/CFS.You have a lot of readers in Europe. Thank you so much!
(english is my second language….bla.bla.bla )
from a norwegian

Reply

cort May 11, 2009 at 4:59 pm

This is a complex issue; yes adrenaline (epinephrine) is not increased in ME/CFS but perhaps the most consistent finding in the entire field is altered heart rate variability readings which suggest increased SNS activity and decreased PNS activity is present. In fact the CDC recently found that these aberrations continued even in sleep; ME/CFS patients didn’t appear to be fully relaxing even when they were asleep.

I am in the ‘aroused’ subset – I can feel it – and these stress reduction exercises do help me. I see two problems; the governments or powers that be – especially in Europe – jump all over anything that smacks of psychology – inflating their benefits and thus turning away from studying physiology. The patients, on the other hand, seeing their fundamental interests dashed once again, turn against things that may in fact be helpful, even if they’re not necessarily curative. Its a problem.

I think Gupta and others will help some people alot and alot of people less. Even if they do offer a way to ‘remodel’ your neural system so that ME/CFS is somehow resolved (and I’m a long way from that point) I think they’re both too difficult and time-consuming for most people to do that. Gupta is helpful but not easy and at least for me – its a very slow process. So its essential that other options be developed and a shame if any option shoves others out of the way.

Reply

kaninkoker May 11, 2009 at 6:09 pm

Agree with you cort. A lot of people make benefit from both Gupta an yoga etc and its a blessing that something can stop or reduce this awful sympoms. But we both agree that this is not a cure for ME/CFS.

You wrote something about defects in NK – and T-cells in our immunesystem. In my opinion, this is the roots of ME/CFS. And the “mice experience” conviced me.
The researchers “knock-out” the mice NK and T-cells with an injection of a protein/ enzyme called dUTPase( Epstein-Barr virus-encoded enzyme) The mice developed fever and sickness behavior like ME/CFS sufferers. Her is a link: http://www.ncbi.nlm.nih.gov/pubmed/15368518

(I know the focus on this blog is Gupta, but I think this is very important.)
People may say that oh this is just a mice and their immunesystem are differents…
The truth is that all mammals have an immunesystem very similar humans. (developed 50 – 70 mill years ago) And I think herpes viruses like EBV, CMV and HHV-6 (and the “new” virus discoverd by WPI called HHV-5.5 (5 point 5) plays a major role in the pathfysiology in ME/CFS. Why some people got ME/CFS and others not has to do with both genes and envirment, I think.
Mice has shown that they simply can`t handle EBV enzyme dUTPase, while most people can. But people with ME/CFS can not handle this enzyme like the mice. Our NK cells and T cells got knocked too by this enzyme. I think there is a lot of hope and I also think that the Whittemore-Peterson Institute have the answear. PS! Dont forget the ME/CFS London-conferance 29th of may….

Best,
Kaninkoker

Reply

cort May 12, 2009 at 6:30 am

Great post Kaninkoker. The WPI believes that NK cell dysfunction is at the heart of this disease for that particular subset. One of their goals is to develop a laboratory animal model for ME/CFS – it seems to be an essential step for understanding any disease. They’re just ploughing ahead – I’ll have the summary of the Reno Conference up soon – there’s a special section on them. I was astonished at what they’ve accomplished. Thanks for the link – I hadn’t heard of that before.

I don’t want to downplay AR though. I have hope that it could be curative for me – I just think that if it is it will take quite some time. The treatment for me is up and down but illuminated by at times by sometimes rather astonishing jumps. The question for me is how far will it go? Will those jumps eventually morph into wellness? I just don’t know.

I think the AR procedure is calming my body down and giving my body’s natural healing properties a chance to re-assert themselves – which includes better immune functioning.

The last London Conference was great! Looking forward to getting the DVD’s from this one as well.

Reply

kaninkoker May 12, 2009 at 4:51 pm

The London Conferance is known for “high quality” lectures. I think this will be a really great one. WPI with both Mikovits and Peterson will be there. Have you ever heard about Prof. Harald Nyland?

He will be one of the speekers at the conferance. He was the first MD to prove that at least one parasite was capable to cause ME/CFS. (Gardia-lamlia) This was in 2004 (or 2005) we had a “gardia-lamlia” scandal in Norway 20 04 and about 5000 became very sick with serious diarea. Between 50 – 100 of these developed ME/CFS so far….by the Canada-criteria. Several hundreds are still not feeling well but do not fulfilled the criteria. So he was the first to prove this connection. It makes me wonder; are the heart of this disease in the gut? Well, about 90 % of our immunesystem are in the gut, thats what I have heard so its possible….
I looking forward to getting DVD?s from this conf. as well.

Best
Kaninkoker

Reply

Terri May 14, 2009 at 4:21 pm

I’m on the fence regarding this program. Do you think that one can get the same results through relaxation excerises and meditation? I wonder if it would help those of us who have POTS/Dysuatonomia?

I would really like to try it but am currently without income so it would be a huge expense for me. I do have a strong response to stimuli along with bouts of anxiety so I think I could possibly benefit from it but if meditation would do the same thing….

I really appreciate your blog and reports on various treatments. I’m relatively new to the illness but am severely affected (housebound).

Thanks Cort.

Reply

cort May 14, 2009 at 4:37 pm

That is an interesting question. I think the AR ultimately is stronger than meditation – it’s very different – but meditation is an important part of the program. It’s not been an easy program for me – it’s taken quite a while – but I think it presents big possibilities. I don’t know about the POTS; one goal of the program is to reign in the autonomic nervous system – which is implicated in POTS. Plus POTS is pretty common in ME/CFS; if he purports to help ME/CFS patients then that should part of it.

I think you should just present your case to Ashok; tell him your situation and ask him to donate the program to you with the provision that if it works out you’ll pay him back when you have money. Perhaps promise him that you’ll communicate about it if it’s effective. (He is a nice guy.) Please let me know what happens.

Reply

Terri May 15, 2009 at 11:15 am

Hi Cort-

Thanks for the great suggestion to contact Ashok. I wasn’t sure where the best place to contact him was so I sent an email to the main website? Hopefully it will reach him.

Doing that made me realize that I would really like to try his program so I look forward to hearing back from him.

In what way has the program been challening for you? I also love the idea of having a forum on your site in which we can ask questions about his program and problem solve about it.

I’m currently finishing up my fourth month on Valcyte which has had little effect but then I haven’t experienced the typical viral symptoms that people have. I was lucky to benefit from Roche’s patient assistance program. I’m glad I tried Valcyte but its time for me to move on to another treatment.

I look forward to more communication.

Terri

Reply

cort May 20, 2009 at 2:30 pm

Ashok said something like sometimes it’s like reaching for something just on edge of consciousness – like a glimmer that you barely notice is there but when you reach it’s very strong. That’s been my experience. One important part of the program is identify triggers that turn on the stress response. I’ve had a horrible time doing that but I’m actually starting to get the hang of it and it is quite powerful. You have to slow yourself down to do that and I’m generally so agitated – partially because I often push my physiological boundaries – that it’s been hard to get deep enough.

My belief now is that the stress response is triggered by all sorts of things – not just conceptions about the disease (aka CBT) but negative conceptions, attitudes, beliefs, etc. regarding everything. Everybody has these – but in CFS I think they trigger a physiological response that locks my body up. I think my body is just supersensitive to negative stimuli of all kinds.

So has Ashok answered you back?

Reply

Lisa Theobald May 20, 2009 at 10:54 am

I did Ashok’s prgram down to the letter, but found it did nothing for my post external malaise. I went to his message board for help, what they told me to do I was already doing, so when doing activities, I was doing the right things. Yet nothing changed.

Reply

Val May 20, 2009 at 1:29 pm

Everyone I’ve met with fibromyalgia is considered low income as they are on disability. Unfortunately, it’s going to be difficult for any/all of us to spend $190 on a maybe. I’ve spent thousands trying to get better over the years. Nothing worked. It’s now difficult to imagine anything working after dealing with so many “wonder cures.” No more money left to try out another miracle cure. Tried acupuncture, chiropractic, herbal meds, a slew of meds from regular MD, etc., etc.

I must say that any program that helps you to relax must be good for us. I never feel relaxed…always on edge. If I had the money, I’d purchase the program just for relaxation tools. But I don’t.

Looking forward to hearing good news about progress with this new treatment.

Val

Reply

Christina Gombar May 24, 2009 at 7:47 am

Hey all — Full disclosure — Ashok sent me a set of the DVD gratis, on the understanding that I would
blog about it, and as it’s been six months — the recommended time to become fully well — I can start to give an honest answer now.

At $190 — I think the program is a good investment — it is a valuable tool for managing the stress response that sends many of us into a the territory where we are the most agitated, and our symptoms magnify 100 times and we get really sick. I did the program religiously — giving it hours and hours a week last winter. Coincidentally, some unpaid writing opportunities came my way. As ever, I felt myself become over-aroused, excited by the opportunity to write, but stressed at the vast number of things I needed to do to organize my material. I felt myself on the verge of a collapse — I was getting way outside my “envelope” — as Dr. Jason says. (Cort — I’d love to see Dr. Jason and Ashok Gupta have a discussion!) I used the technique, which is no great mystery — just asserting a little OCD exercise in to disrupt your panic-stress-illness inducing thought pattern. It was a save, I made my deadline and produced articles I was really proud of.

The DVD’s are quite lengthy, detailed, well-produced, soothing, intelligent. Why is this important? There are so many “coaching” programs out there by chronically ill people — that are hard to use, poorly executed, amateurish, etc. I care about presentation, I care that things have been thought out.

OK — the downside — this works very well for the stress response. But it does nothing for post-extertional malaise, which I get if I spend more than 2-3 hours on the computer. My problem is, for several years, I seem to be at the “recovery” level of his “cured” patients. Meaning, if I take my supplements, rest, meditate, pace myself, don’t multi-task, do yoga, do things I enjoy — that is, stay within my “envelope” — I can be relatively well. The Retraining program has allowed me to control the stress response of work/sensory overload a bit. But if I walk too much — as I did last weekend on a trip to New York — the technique doesn’t help. A few days of reduced activity did. I also have not been able to give up my supplements. He claims that everything cascades from the “stress response” -but — look, I’m almost 50 — even fully healthy people my age need a lot of the supplements I’ve found keep me as well as I can be.

To me, the ultimate test of Ashok Gupta’s Amygdala retraining program is — can we go back to work full time, in a self-sustaining career? Time will tell in my case. One issue is — once you’re feeling better, and able/trying to work more — you just need to do your work. Professional writers I know, who actually support themselves with their writing, must work 11-14 hours a day. There’s no way around it. It’s hard to do that, and spend hours a day doing the technique.

It’s the same issue I found when I first got sick, close to 20 years ago. I was canned from my Wall Street job, and thought the solution was self-care and lifestyle management. Unfortunately, a well-paced freelance life didn’t afford me enough money to live. So back I went to a full time job, and instantly I got very sick. When my ability to pace my life and meditate, exercise, etc. was gone — so went my health.

I’d love to be able to say that the Amygdala Retraining was a full cure, but for me it hasn’t been. I continue to work with the technique and the advice — which is common sense stuff, nothing crazy.

Bottom line — I think it would be worth the $190 — most of us spend that in supplements in a month, and unlike a series of acupuncture or semester of yoga — it’s something you can use forever.

Reply

Pat May 27, 2009 at 5:05 pm

Cort, I would like to ask a few questions. I’ve been reading the testimonies regarding this AR therapy and they are so encouraging and inspiring. Have you ever heard of this kind of improvement and recovery with any other treatment? If it is so successful, would this not be a ground breaking discovery? Has any of this been refuted by other researchers in CFS?
Also there was a post above that stated : “This type of recommending treatment not properly done in clinical trials, etc., can have negative affects on a very ill population”. Is that possible, that AR can have an negative or side effects on the body?
Thankyou for your help and comments

Reply

cort May 28, 2009 at 6:40 pm

Actually I have not heard this kind of positive response from other treatments. Take Valcyte – a good number of people have tried Valcyte now – and while you hear some positive outcomes for sure – you also hear alot of so-so or basically null outcomes.

We really need to know more about how the broad range of patients will respond to the AR. Take me – I’m very happy with AR – but I’ve been doing it on and off for a year – and many people might not want to stick with it for that long. Even after a year I’m not nearly well but I’m just alot better and I feel pretty sure that I’ll keep slowly improving. I certainly don’t want to hold myself up as a test case though. I’ve done the AR in a rather haphazard fashion – I’ve never really dedicated myself to it as Ashok suggests. On the other hand I’ll bet there are alot of people like me. In part this is because the program is not a particularly easy thing to do – some people just won’t go for it.

Put it this way – I don’t think this program will benefit everyone the way it could because it contains some roadblocks that people will have trouble negotiating; it takes a good chunk of time during the day and it takes time over the long term. Some of the recovery stories are amazing, though. I hope to include it in a Forum package I’m trying to get going and in a treatment assessment program I’m also trying to get started.

No researchers have refuted the AR and quite a bit of research is heading towards the area of the brain Ashok Gupta believes is involved.

I don’t see how the program could harm if it’s done correctly. It never suggests that one should push through one’s symptoms. In fact it suggests that doing that just re-engages the stress response. The program is designed to get patients to a place where they have lessened or even no symptoms and at that point decide have them decide whether they should engage in activity or not.

Reply

Anastasia June 10, 2009 at 6:48 pm

I have been practicing first Mindfulness then other types of Buddhist meditation for several years. I find it incredibly helpful; in fact, I have found it transformative. My practice changed me from someone who reacted to someone who responds. I have been asked to teach meditation to friends and they have referred their friends. My guided meditations are particularly popular but everyone falls asleep which they enjoy but is not my intention.

Buddhist monks have been studied and their brains do, indeed, work differently from those of non-meditators. We can absolutely change our neurology. I do not question that assertion.

I am now very calm. But, alas, I am still sick. My experience with Meditation has been very much like Christina Gombar’s with the method under discussion – I may be chill but I still get post exertional malaise.

In fact, I experienced a long and wonderful remission of symptoms to a range of about %30 to %80 functioning for years. The years leading up to that time and, in fact, those years themselves were some of the most stressful of my life. I was not even a little bit Zen but my health was improved enough that I could hide my illness much of the time, run my own video production company, travel and even think. I was always dragging my behind and I was frequently moderately ill, but it felt like heaven compared to the illness that preceded it. If I had to collapse somewhere for a couple of days, I would much rather it be in Delhi or Zanzibar!

I hadn’t really thought about the lack of correlation between stress and my remission before now but it is pretty stunning. I can’t explain it but it happened. I now practice several different types of meditation, stress very little and I’m quite ill.

For me there is no more eloquent proof of the limits of these methods to cure ME than Pema Chodron, a highly respected Buddhist Nun and teacher who, despite being a world class meditator, still suffers from ME even though she has a most disciplined mind.

I think everyone can benefit from meditation and Mindfulness meditation is accessible to everyone – it’s also free! I also think that controlling the stress response and having a disciplined mind is beneficial for every illness man is heir to. And, I’m quite sure that there are many it would cure. I just haven’t see any evidence, personally, that it is curative for ME.

Peace out,
Anastasia

Reply

Helena Griffiths October 20, 2009 at 5:17 pm

The Gupta Programme has had miraculous results for me.
I could hardly get out of the house until the CD’s and workbook arrived last week.
I completed session 4 of the Amygdala Retraining Programme and it had an instant effect. (Sessions 1-3 are available free on YouTube)
Now i am working through the remaining Sessions’ to deal with underlying anxiety,bodily chemical unbalance etc that i was unaware of.
Many thanks to Ashok, i can now start rebuilding my life and live again.

Reply

cort October 20, 2009 at 5:35 pm

Glad to hear it Helena! I think we should all keep in mind that when Dr Mikovits talks about keeping a retrovirus under control that among the things she talks about are hormones and pro-inflammatory cytokines; these are two things that the Amygdala Retraining Program can be very helpful at. Simply by turning the stress response down you automatically re-modulate the immune system so that it should be a better deal with pathogens of all types. Despite all the interest in antivirals and such the Gupta program has shown to be very helpful for many people. I think its a good adjunct for any treatment and I hope you continue your great progress!

Reply

Erik Johnson October 20, 2009 at 9:10 pm

The variable of emotional stress-response is an entirely separate issue from viral infection.
While there are undoubtedly some people who happen to have a viral illness that might benefit from such a program, this would not inherently apply to the condition itself… and presenting it as if it were, would be a misapplication of the principle that therapies claiming to be FOR a condition should be intrinsic to that condition.
And not to comorbid ones.

Reply

cort October 20, 2009 at 9:19 pm

If the stress response is disturbed in an individual and many studies have shown alterations in the HPA axis and in HRV readings then any activities – whether they be pharmaceutical or behavioral in nature or whatever – that help to return those findings to normal – should assist the immune system because the HPA axis and sympathetic nervous system both regulate the immune system – whatever their viral status.

Reply

Erik Johnson October 21, 2009 at 7:20 am

The assertion that everyone could benefit is similar to the assumption that anyone who was involved a traffic accident could benefit from traffic school.

If someone was sitting at a stoplight and got rear-ended by a drunk driver, we have no reason to assume that anything about their pattern-behaviors were at error, faulty or maladaptive…. and require any correction whatsoever.

What if the person sitting in the motionless car was a driving instructor?
Would it be appropriate to insist that traffic school helps people to drive better,
so he should attend anyway, regardless of his status?

Reply

cort October 21, 2009 at 8:48 am

Who said anything about patterns and behavior? Do you believe behavior is the only way to dysregulate cortisol and the sympathetic nervous system? I don’t. I was referring to physiological measurements not behavior. I wasn’t referring to cause either – I was referring to the aftermath. Are you saying that because a virus has been found we should ignore ways to treat other physiological abnormalities in this disorder?

And who said everyone? Everyone doesn’t benefit from these therapies – some people such as Helena benefit really a lot and some benefit less and some don’t benefit at all. Are you saying that because everyone doesn’t benefit we should ignore them?

In a class of ‘everyone’ which includes people who do or do not benefit from these therapies its entirely appropriate to state that ‘everyone could benefit’. It’s not appropriate to say ‘everyone will benefit’

Reply

Erik Johnson October 21, 2009 at 9:11 pm

>
“I could that what was going on in my body was completely unconscious – I had no control over it – which is one thing that makes me think this is not a psychological but an neurological illness. But I thought that there must be a way that I might be able to consciously control this reaction. ”
>

That’s about as “Behavioral” as it gets.

Reply

cort October 22, 2009 at 7:20 am

The idea that the mind can effect the functioning of the body is fairly new to Western medicine and apparently entirely new to you. Heart patients are given mindfulness exercises to slow down their heart beat. Asthma patients are given breathing exercises to prevent asthma attacks. If the autonomic nervous system is involved its involved – and it’s definitely involved in ME/CFS – it can be manipulated.

It would be great if ME/CFS was a simple disorder but its not – yours attempts to make into a behavior vs physiology issue just don’t hold water. There are behavioral things that help in ME/CFS; pacing is a good example; you watch the effects of too much activity and proceed accordingly; Ashok’s Amygdala Retraining is another – you observe the effects of another stress input – negative thoughts – and proceed accordingly. Sorry – but both help! There are many accounts of patients that have found help from that. Some do not. Perhaps you should try to incorporate these new findings into your understanding of chronic fatigue syndrome rather than try and argue them away. Quite frankly I don’t know what else you can do. These are actual people speaking after all.

Reply

Erik Johnson October 22, 2009 at 7:40 am

If someone has the ability to control their illness by mental means but neglected or failed to do so until they received therapy or instruction, they need “mental” help.
What could be plainer than that?

The comparison is often made to physical trainers, as if people could not find ways to exercise effectively without professional help, but when it gets right down to it,
a trainers main product is MOTIVATION.

The promoters of mental interventions have never failed to try and and pursuade society that since the mental input is controlling a physical response, that this is NOT a mental deficit.
But although they may say nothing to humor those who desperately wish to believe it, this doesn’t really fool most people.

Reply

cort October 22, 2009 at 8:49 am

You’re using mental in the context of ‘mentally ill’. I’m using mental in the context of using mindfulness techniques to alter the rate and depth of breathing, the production of stress chemicals, to relax the muscles, etc. If the sympathetic nervous system is turned on – by whatever means – then research has shown that it is one of the few systems that you can ‘reset’ mindfully.

I believe that the SNS activation in this disorder does not have a behavioral origin – I believe it’s physiological. Why not have a chronic infection in the body that leads to a state of hyper arousal in the central nervous system. Why not? Why does it one have to be behavioral and one physiological?

I agree that these approaches try and bridge two worlds and that they are difficult to explain because of that and that people on either side of the issue will try and take advantage of that. That’s the world we live in though – and it changes nothing about the actual issues at stake here.

Reply

Ramona November 4, 2009 at 7:02 am

I have just discovered Gupta’s work in the past hour. Google lead me here. I have to say that his hypothesis here: http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=14977&B1=EM110409F

Along with his article
Gupta, A. “Unconscious Amygdalar Fear Conditioning in a Subset of Chronic Fatigue Syndrome Patients.” Medical Hypotheses Volume 59, Issue 6, 12 November 2002, Pages 727-735

Totally conform to my own hypotheses regarding CFS. I have suffered from this disease for 39 years. I have tried most known methods of treatment and a few really fringe methods. I always recover enough to work but always relapse for a period of time. In the past six months, my stress went through the roof through no fault of my own. I am now in a very active flare up.

As to the back and forth between Cort and Erik, I have to say Erik that you fundamentally misunderstand the mind/body equation. We have been taught, especially in the West, to see these systems as separate. This separation is the direct cause of much of the suffering in this world. All bodies are a continuum. The ‘mind’ or call it the nervous system if that makes it easier to understand, is totally implicated in the ‘body.’ In fact, recent studies demonstrate that nerve fibers penetrate immune cells all over the body. We are ONE organism and all the systems in ‘selves’ are integrated. Gupta is NOT claiming that CFS is a psychological problem. Quite the contrary, he is claiming that there is a complex feedback between the nervous system and what we call ‘the body.’ I would claim that it is all the body, that the mind is in the body and the body is in the mind. CFS is not ’caused’ by the nervous system, but the nervous system is involved in a complex feedback loop with the immune system. This we now know is true whether we are studying CFS or cancer.

Any therapy which has the potential to disrupt this feedback loop is potentially beneficial. If the therapy does not work for some people, that is of no real consequence as we do not understand these mechanisms to be able to fully explain what is going on.

Meditation does not help me. I get very calm, but remain sick. I get blissful in one sense, but cannot sleep. I am going to pursue this method with the idea that it may treat ONE

Reply

Ramona November 4, 2009 at 7:05 am

I have just discovered Gupta’s work in the past hour. Google lead me here. I have to say that his hypothesis here: http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=14977&B1=EM110409F

Along with his article
Gupta, A. “Unconscious Amygdalar Fear Conditioning in a Subset of Chronic Fatigue Syndrome Patients.” Medical Hypotheses Volume 59, Issue 6, 12 November 2002, Pages 727-735

Totally conform to my own hypotheses regarding CFS. I have suffered from this disease for 39 years. I have tried most known methods of treatment and a few really fringe methods. I always recover enough to work but always relapse for a period of time. In the past six months, my stress went through the roof through no fault of my own. I am now in a very active flare up.

As to the back and forth between Cort and Erik, I have to say Erik that you fundamentally misunderstand the mind/body equation. We have been taught, especially in the West, to see these systems as separate. This separation is the direct cause of much of the suffering in this world. All bodies are a continuum. The ‘mind’ or call it the nervous system if that makes it easier to understand, is totally implicated in the ‘body.’ In fact, recent studies demonstrate that nerve fibers penetrate immune cells all over the body. We are ONE organism and all the systems in ‘selves’ are integrated. Gupta is NOT claiming that CFS is a psychological problem. Quite the contrary, he is claiming that there is a complex feedback between the nervous system and what we call ‘the body.’ I would claim that it is all the body, that the mind is in the body and the body is in the mind. CFS is not ’caused’ by the nervous system, but the nervous system is involved in a complex feedback loop with the immune system. This we now know is true whether we are studying CFS or cancer.

Any therapy which has the potential to disrupt this feedback loop is potentially beneficial. If the therapy does not work for some people, that is of no real consequence as we do not understand these mechanisms to be able to fully explain what is going on.

Meditation does not help me. I get very calm, but remain sick. I get blissful in one sense, but cannot sleep. I am going to pursue this method with the idea that it may treat ONE pathway in the disease.

CFS is NOT psychological. That does not mean there is no nervous system component. Can you try to see the difference? If you are a sufferer, it might mean you could help yourself if you stop resisting understanding this aspect of the disease.

And Cort, I would love an email from you. I am assuming as the administrator, you can see the address I typed in to the comment field.

Reply

Erik Johnson November 4, 2009 at 9:42 pm

If somebody successfully recovers after years of illness by choosing to cognitively remodulate their “fight or flight response”, the unavoidable corollary is that their illness must have been unnecessarily prolonged by their failure to “get help” sooner.

And as you have just suggested to me, it was their stubborn “resistance” to get this help which keeps them ill.

So can we also surmise that since Ashok recovered completely, but others that have done amygdala retraining have not, that they are being resistant to the process? And simply need to try harder?

Reply

Khaly Castle November 5, 2009 at 10:04 pm

I have to say, this whole Amygdala retraining thing strikes me as a slightly more sophisticated version of the Lightning Process, and by sophisticated I simply mean that it seems to cater more toward the potential customer’s idea of oneness with self, a more positive affirmation than “if you are feeling ill, then you are not doing this process correctly”.
See http://www.sayer.abel.co.uk/LP.html

At least, it doesn’t seem to be said out loud with the AR, but the implication is the same.

Recently, Ashtok Gupta responded to the XMRV findings. I imagine he had to, given the magnitude of the WPI’s paper and its implications. Mr. Gupta’s response, in part, was:

“Recently you may have read about the “XMRV” virus, and how it might be involved in ME/CFS. I have spent the last few weeks researching the area, and have written a draft medical paper (below) which explains how the XMRV findings fit with the Amygdala Hyperarousal Model for ME/CFS and Fibromyalgia.

Essentially I believe that XMRV may simply represent one of many opportunistic infections in the bodies of patients. Its presence may simply be due to a weakened immune system caused by chronic overstimulation of the sympathetic nervous system, allowing opportunistic infections to flourish. Once the amygdala is retrained, the immune system can come back to balance and fight off these infections. This is probably why many patients do recover from ME/CFS and Fibromyalgia yet have not taken any anti-viral medication. Further research is required to see whether XMRV actually in any way might contribute to ME/CFS.”
(entire article at
http://planetthrive.com/2009/10/xmrv-retrovirus-findings-and-amygdala-hyperarousal-model/)

First of all, I’m not sure Mr. Gupta is qualified to write a medical paper, draft or otherwise. Second, I find it curious that Mr. Gupta fails to note that “the virus” is a retrovirus, not just another one of the bajillion possible opportunistic agents that CFSers run into ho hum oh my. It is a new retrovirus, and the implications can be vast and stunning.

Third, even if its presence is due to an already weakened immune system (due, no doubt, to a broken-thinking cycle leading to a misfiring amygdalic response), it is simplistic and misleading to state that fixing our broken amygdalas, or any other behavioural training, can “fight off” a retroviral infection. Retroviral infections are lifelong, or at least, I’m not sure how amygdala retraining has ever rid anyone of HIV.

Earlier today I was speaking to someone about mold toxins. This person is applying Amygdala retraining to his/her situation with toxic mold illness. I commented that the fight or flight response was particularly crucial in this situation, because this response is exactly what tells you that you’re in a bad place. I said that “one of my very FIRST indications that I am in a toxic situation is a slight alteration in mood. Without that little trick, I’d be in a lot worse shape. It has literally saved me dozens of faceplants.

It goes like this for me…a slight change of mood, a little compression feeling in the back of the head/neck, migraine, floor. Floor, like in seizures-on-the.

So I love my amygdala hyper-response!”

In response, I was told that if the amygdala training worked, I would no longer find myself on the floor at all with severe mold toxicity. If I calmed my brain’s overreaction to the toxins, I wouldn’t be on the floor in the first place.

I ask you, if you were to substitute “severe peanut allergy” for “severe mold toxicity”, would the same sentence make any sense to you? Or, to take it to the next step, would it make any sense to you if you substituted “severe Parkinson’s disease” or “severe Muscular Dystrophy”? And then, if that seems a little not-so-right, why is “severe CFS” any different? Unless you don’t think it’s AS biologically driven as the other afflictions I just mentioned.

Don’t get me wrong. Anything that calms the mind is a good thing, in any situation. It does not, however address the underlying etiology. We still have a peanut allergy, we still have mold toxicity, we still have Parkinson’s or MD or CFS. We’re just more “okay” with it.

Reply

Erik Johnson November 6, 2009 at 10:09 am

Well put, Khaly.
Calming the mind is indeed good, if one possesses a mind that is not calm, which, of course… is not always the case for all people with CFS, even in the face of immune dysfunction and disablement.
However, one should consider the message that society receives, if someone with CFS manifests any form of recovery by damping down their anxiety behaviors.
Which is basically this:
“However much you recovered is exactly the amount that you were doing it to yourself, as demonstrated by what happened when you stopped doing it”.

Reply

Graham January 8, 2010 at 8:26 pm

Interesting. We seem to have a whole spectrum of views in the comments here. I’ve suffered from CFS for almost two years now, and have just started the Gupta programme. The 6-month commitment sounds difficult for me to maintain without support, so I’ve set up a blog to help monitor my progress. If it works for me, you’ll find out. If not, I’ll tell you that too. If you’d like to see how I go, follow my blog..

Reply

Graham January 15, 2010 at 7:06 pm

There seems to be a lot of unnecessarily negative pontificating going on here. Erik, have you actually watched the Gupta DVD set? Have you tried the programme yourself and found it didn’t work for you? Or is your objection just that his explanation for the cause of CFS disagrees with your own, and therefore couldn’t possibly be addressing the root cause? Last time I checked there wasn’t a global consensus on what causes the illness; or even a widely-agreed effective treatment.

For me, the question is whether it works or not. I don’t care whether the explanation agrees with anyone else’s entrenched pet theories or biases. I’ve just started the programme, and am optimistic. If you want to see how I go, follow me on my blog. Cheers, Graham

Reply

Rebecca May 9, 2011 at 12:49 am

@ Erik Johnson who wrote:

”If somebody successfully recovers after years of illness by choosing to cognitively remodulate their “fight or flight response”, the unavoidable corollary is that their illness must have been unnecessarily prolonged by their failure to “get help” sooner.” ”And as you have just suggested to me, it was their stubborn “resistance” to get this help which keeps them ill.”

Allright, this can make me really angry. So all the people who got well by the programme had resistance which keeps them ill?? Don’t make me laugh! I think rather the people who don’t try the programm have a resistance to getting better.

And the programme is NOT at all about changing things ”cognitively” . So I can clearly make up that you have no idea what you are talking about.

So all the people who got better with the programm failed to get help sooner? Pfff. Most of the people who try the programm have tried EVERYTHING on the planet to get better. So you are telling just bullshit here. The people who are still ill with ME/CVS, also failed to get ”help sooner” than, otherwise they would be also better wouldn’t they.

Ok, I know so many people who got better with the programm, including myself.

So I guess I agree with Graham. Perhaps the people who just critisize should try the programm themselves first before they can judge.

Reply

redrachel76 August 14, 2012 at 9:47 am

I have not tried this and do not intend to.
It just sounds like psycological mumbo jumbo with some biological words thrown in.
Those of you who have improved on it – I am glad you have and wish you well. I certainly don’t wish this disease on anyone. I find meditation, biofeedback and calming hobbies good mentally so in that sense they are helpful but they certainly don’t cure or seriously treat this physical illness.
Those of you it has helped, carry on doing it, but I hope it doesn’t get funded over serious biomedical research.

Reply

Leave a Comment

Previous post:

Next post: