How XMRV Retrovirus Findings May Fit With The Amygdala Hyperarousal Model for ME/CFS

by | Oct 29, 2009 | Brain Plasticity News, Chronic Fatigue / ME News, Featured, Fibromyalgia News, NEWS | 31 comments

a draft paper by Ashok Gupta

BrainRecently 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.


Background

Recently scientists from the Whittemore Peterson Institute (WPI) led by Dr Mikovits, claim to have discovered a retroviral link to ME/CFS (1). This pioneering research has identified a retrovirus called XMRV, shown to be active in two-thirds of patients (published), and antibodies for the virus were present in 95% of patient (unpublished research). The samples were taken from outbreaks of ME/CFS in the 80’s and 90’s.

Mikovits’ team said further research must now determine whether XMRV directly causes CFS, is just a passenger virus in the suppressed immune systems of sufferers, or a pathogen that acts in concert with other viruses that have been implicated in the disorder by previous research.

The purpose of this paper is to hypothesise how these findings may fit with the Amygdala Hyperarousal Model for ME/CFS (2).


Three Potential Hypotheses

Overall there are three broad hypotheses that we can infer from the findings so far, as per Mikovits’ statement:

1. The XMRV virus directly causes the symptoms of ME/CFS.

2. The XMRV virus indirectly causes ME/CFS by suppressing the immune system in concert with other pathogens, allowing opportunistic viral and bacterial infections to flourish causing the symptoms of ME/CFS.

3. The XMRV virus is simply a passive opportunistic infection which establishes itself due to general suppression and dysfunction of the immune system from another source. (This general immune dysfunction may be caused by autonomic dysfunction as a result of amygdala hyperarousal).


Evaluation

There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2” biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.

RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia.

It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical” MS and Autism.

The XMRV virus may simply represent one of many viral and bacterial infections present in the blood of ME/CFS patients, and that many of these previous infections (including EBV) had been previously prematurely suspected as the root cause of ME/CFS. There have been many previous studies which have shown similar results to those found for XMRV. As an example, a 2002 study found that out of 261 patients with ME/CFS, 68.6% of patients had active mycoplasma bacterial infection present compared to 5.6% of controls, a similar result to that found for XMRV (4). A 2003 study found that 30.5% of CFS patients had active HHV-6 virus present, but only 9% of controls (5). For Chlamydia pneumoniae it was 7.8% of CFS patients compared to 1% of controls (5). For Parvovirus B19, it was detected in 40% of CFS patients but only 15% of controls (6).

What was interesting in the 2003 (5) study was that having one particular infection did not predict the likelihood of having another infection. This may indicate that the infections themselves are not cumulatively affecting the strength of the immune system to fight off opportunistic infections, but that a general immune deficiency is allowing particular types of infections to establish themselves in a pattern unique to each patient.

According to the WPI research, 4% of healthy controls had active XMRV virus in their blood (versus 67% of ME/CFS patients), which is similar to the levels of active mycoplasma infection in healthy controls. Therefore presence of active XMRV does not necessarily predict ME/CFS, and would not support the first hypothesis. If 4% of the US population were found to have active XMRV pathogen in their blood, this would amount to over 10 million people. Yet there is no evidence that XMRV causes cancer where it is active, or that it has any effect on health. It is merely a suspected link in 23% of prostate cancer cases where it is found in 1% of surrounding tissue, with no causal link established at this stage; one hypothesis is that its presence is simply linked to immune deficiency. Once again, the XMRV virus was found in 6% of benign biopsies showing that its presence may be widespread in the general USA population. Further research however is critical.

It may be that XMRV may be a localised virus to the USA, especially since a recent report from Germany (7) found that out of 589 biopsies carried out on prostate cancer cases, not a single patient showed any evidence of XMRV. They conclude that “One possible reason for this could be a geographically restricted incidence of XMRV infections.” (7) The WPI research was carried out on documented ME/CFS outbreaks which represent a very small percentage of ME/CFS cases.

If 95% of ME/CFS patients show antibodies to XMRV (yet unpublished data from Mikovits’ team), yet only 67% show active virus, this could indicate that a third of ME/CFS patients no longer had the active XMRV virus, yet still were suffering from ME/CFS. If this is confirmed to be true, then the first hypothesis would seem redundant, and XMRV could only be the root cause of ME/CFS if the second hypothesis were correct, i.e. that XMRV had adversely affected the long term performance of the immune system. Alternatively the presence of antibodies could imply that the virus is still active in more that 67% of patients, but had not been picked up through previous methods. It would also be interesting to know the percentage of healthy controls that tested positive for XMRV antibodies which has not been revealed.

One way the link within the second hypothesis could be established, is to test whether the presence of active XMRV predicted higher levels of other opportunistic viruses and bacterial infections. According to the second hypothesis, presence of active XMRV should predict suppression of the immune system and further opportunistic pathogens. However, as previously mentioned, there is little evidence that having one opportunistic pathogen in ME/CFS predicts the likelihood of having another, therefore cumulative immune deficiency caused by XMRV attack is unlikely, otherwise previous studies would have highlighted this finding in the blood of ME/CFS patients. This once again seems to tentatively support the third hypothesis, in that XMRV may simply be a passive opportunistic virus similar to other herpes viruses such as HHV-6 and EBV. Even if presence of XMRV did predict the likelihood of secondary infection, it would still be difficult to infer causality.


The Amygdala Hyperarousal Model and XMRV

The Amygdala Hyperarousal model states that ME/CFS and Fibromyalgia may be caused by a conditioned trauma in the amygdala following an acute viral, bacterial or physical insult, combined with psycho-social distress. Once the classical and operant conditioning has occurred, the amygdala in association with the insula, become hyper-sensitive to signals from both the body and external stimuli, and magnify both the extent and frequency of the incoming stimuli in the sensory thalamus and cortex. This then produces the ME/CFS vicious circle, where an unconscious sensitivity reaction to symptoms causes chronic stimulation of the HPA axis, immune reactivation/dysfunction, chronic sympathetic stimulation leading to autonomic dysfunction, mental and physical exhaustion, allergies, compromised detoxification, mitochondria dysfunction, oxidative stress and a host of other distressing symptoms and secondary complications. And these are exactly the symptoms that the amygdala, the insula, a
nd associated limbic structures are trained to monitor and respond to, perpetuating a vicious circle.

The Amygdala model predicts that there is likely to be TH2 dominance over TH1 due to overstimulation of the sympathetic nervous system. This has already been extensively documented in many studies of sympathetic overactivity due to acute stress and anxiety (8, 9, 10). Although an ME/CFS patient may not necessarily mentally experience acute stress or anxiety, the model predicts that the physiological aspects of the stress response are chronically engaged, thereby causing disruption in various systems of the body including the immune system. TH2 will dominate over TH1, causing a likely increase in opportunistic viral and bacterial pathogens such as XMRV, as well as an increase in allergic responses due to TH2 over-sensitivity, as well as increased propensity to produce antibodies. There is extensive evidence of increased chemical and physical sensitivities in patients. The parasympathetic system is suppressed, compromising digestive and detoxifying processes in the body.

Once the sympathetic autonomic system is conditioned to be chronically activated, it is very difficult for autonomic and Th1/Th2 balance to be restored. Opportunistic viruses and bacterial infections flourish, in themselves causing further symptoms in addition to the ones caused directly by amygdala hyperarousal.

In the field of Psychoneuroimmunology, many studies have shown that excessive sympathetic activity can have an immuno-suppressive effect on the body via Neuropeptide Y release, thereby pointing to another pathway by which excessive sympathetic stimulation may compromise immune function. A study by Fletcher et al (11) seems to model this effect in ME/CFS patients. ME/CFS patients tend to show low natural killer cell cytotoxicity, (NKCC), and it is known that Neuropeptide Y (NPY) suppresses NKCC. NPY is concentrated in the sympathetic nerve endings, and following stress, is released together with adrenaline and noradrenalin. Fletcher et al’s study tested the hypothesis that elevation of NPY occurs in ME/CFS and that the elevation of NPY is associated with severity of clinical symptoms. They found that NPY was significantly associated with severity of clinical symptoms, and that NPY could be a potential bio-marker for ME/CFS. This shows a direct link between levels of symptoms, and sympathetic overactivity where the most likely culprit is amygdala hyperarousal.

The WPI team are working on the hypothesis that many of the symptoms of ME/CFS may be caused by XMRV attacking the cells of the immune system, thereby compromising immunity. However, there is potentially another culprit for reduced immunity as discussed: chronic sympathetic activity. This has already been shown to suppress general immunity and especially TH1 function, whilst at the same time causing TH2 dominance, inappropriately stimulating allergic responses in the immune system. (8,9,10)

There is a possibility that XMRV somehow directly affects TH1 function, and simultaneously directly affects the autonomic nervous system, however there is no evidence of this and further research is required.

What is most interesting about the XMRV announcement is that the team also found higher levels of XMRV in people with Autism and atypical Multiple Sclerosis (as yet unpublished). A study by Nicholson et al (12) looked at the presence of co-infections in ME/CFS patients versus patients with Autism Spectrum Disorders. The study found that both groups had higher incidence of multiple, systemic bacterial and viral infections compared to controls, but interestingly, both ME/CFS and Autism patients had very similar levels of active infections when compared to one another. Autism is a disorder where sustained amygdala hyperarousal is accepted as a model for partly explaining the disorder (13), so once again there is tentative support for the amygdala’s role in ME/CFS.

This is a very important finding because of the differences and commonalities between ME/CFS and Autism. We would not necessarily expect any commonalities with respect to infections as the conditions seem to have a very different neurobiological basis. However, the common factor may be sustained amygdala hyperarousal, but due to very different causes. The sustained amygdala hyperarousal in Autism may develop in early childhood due to socio-biological reasons, whereas sustained amygdala hyperarousal in ME/CFS may develop as a result of several co-curring acute factors triggering a conditioned trauma in the amygdala later in life. Both conditions then result in a unique pattern of chronic sympathetic stimulation, but for very different reasons, causing similar levels and types of opportunistic viral and bacterial infections. It is likely that the level of hyperarousal in ME/CFS is much more severe and dwarfs that of Autism, but both conditions exhibit enough of a chronic long t
erm sympathetic response to result in opportunistic infections.

Several recent studies have reported abnormalities in amygdala volume in Autism. (14,15). Furthermore, most studies in Autism show abnormal processing by the brain and the amygdala in response to emotional stimuli, and continual background amygdala hyperarousal is once again suspected (13). Further research is required to test any abnormalities in the function of the amygdala in patients with ME/CFS, which may not show up on standard brain scans. It would be interesting to understand the levels of active XMRV virus and antibodies in Autism.

Finally there are a host of physical changes in the brains and bodies of ME/CFS patients which have been well documented and which are consistent with the concept of chronic autonomic dysfunction. These findings cannot be ignored as a result of the XMRV announcement, but need to fit within an integrated hypothesis.

There are many patients who do recover from ME/CFS and Fibromyalgia over time, and yet may not have taken any kind of anti-viral medication. This may indicate that changes that a patient themselves initiate, may be enough to strengthen the immune system, bring the body back to homeostasis, and eradicate opportunistic infections such as the suspected XMRV.


How Amygdala Retraining Might Reduce XMRV and other Opportunistic Pathogen Levels

Amygdala retraining aims to reduce the stimulation of the sympathetic nervous system by creating a projecting neurone from the prefrontal cortex to the amygdala to control its over-zealous reactions. This in turn would reduce the sympathetic overload, allowing TH1/Th2 ratios to gradually return to normal, allowing the body’s own immune system to fight off opportunistic infections such as the suspected XMRV. Symptoms from amygdala hyperarousal (including changes in the brain), and symptoms from opportunistic infections would then subside, as well as any allergic effects of TH2 dominance.

Amygdala retraining aims to bring homeostasis back to the body after a period of imbalance, where the balance between the sympathetic and parasympathetic systems returns to normal, as does the TH1/TH2 balance.


Conclusion

The WPI findings are indeed a step forward in ME/CFS research, and are significant findings. However, further research is required to validate the idea that XMRV is a contributing factor in the pathogenesis of ME/CFS, versus being simply another passive co-curring infection such as mycoplasma, HHV-6 and EBV.

Amygdala retraining aims to reduce the levels of opportunistic infections such as the suspected XMRV virus by strengthening the immune system through balancing the TH1/TH2 ratio and bringing the body back to homeostasis.


Future Research

Further research is required to answer the following questions:
– What was the percentage of healthy controls that tested positive for XMRV antibodies? (The 3.7% figure seems to be referring to the percentage of healthy controls which tested positive for XRMV virus DNA rather than antibodies in unpublished research)
– What percentage of people with Autism display evidence of active virus or antibodies?
– What percentage of patients with other neurodegenerative disease, fatiguing illnesses and neurobehavioral disease show evidence of XMRV?
– Can the studies be replicated effectively across the ME/CFS population?
– Can the studies be replicated in different parts of the world?
– Why are controls which have active XMRV not displaying obvious pathology?

*As of January 25, 2010, Planet Thrive is participating in an affiliate program for the Gupta Amygdala Retraining Programme™ after observing over 30 members of the Planet Thrive Gupta Support Group, who reported many benefits over several months time.


References

(1) Mikovits JA et al. Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Science. 2009 Oct 8
(2) 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
(3) Nicolson, G.L. Chronic Infections in Neurodegenerative and Neurobehavioral Diseases. Lab Medicine 2008; 39 (5): 291-299
(4) Nijs J et al. High prevalence of Mycoplasma infections among European chronic fatigue syndrome patients. Examination of four Mycoplasma species in blood of chronic fatigue syndrome patients. FEMS Immunol Med Microbiol. 2002 Nov 15;34(3):209-14
(5) Nicolson GL et al. Multiple co-infections (Mycoplasma, Chlamydia, human herpes virus-6) in blood of chronic fatigue syndrome patients: association with signs and symptoms. APMIS. 2003 May;111(5):557-66.
(6) Frémont M et al. Detection of herpesviruses and parvovirus B19 in gastric and intestinal mucosa of chronic fatigue syndrome patients. In Vivo. 2009 Mar-Apr;23(2):209-13
(7) Hohn 0 et al. Lack of evidence for xenotropic murine leukemia virus-related virus (XMRV) in German prostate cancer patients. Retrovirology. 2009 Oct 16;6(1):92. [Epub ahead of print]
(8) Hashizume H et al. Anxiety accelerates T-helper 2-tilted immune responses in patients with atopic dermatitis. Br J Dermatol. 2005 Jun;152(6):1161-4
(9) Ermolao A et al. Relationship between stress hormones and immune response during high altitude exposure in women. J Endocrinol Invest. 2009 May 21. [Epub ahead of print]
(10) Höglund CO et al. Changes in immune regulation in response to examination stress in atopic and healthy individuals. Clin Exp Allergy. 2006 Aug;36(8):969-71.
(11) Fletcher AM et al. Neuropeptide Y (NPY): Correlates with Symptom Severity in Chronic Fatigue Syndrome. Abstract of presentation to IACFS/ME Conference, Mar 2009, Reno, Nevada
(12) Nicolson G. et al. (2009) Similarities of CFS and Autism Spectrum Disorders: Comparison of Blood Co-Infections. (Source: Abstract of presentation to IACFS/ME Conference, Mar 2009, Reno, Nevada. By Nicolson GL, Nicolson NL, Haier J. The Institute for Molecular Medicine, Huntington Beach, California, USA; Department of Surgery, University Hospital, Munster, Germany.
(13) Kleinhans NM et al. Reduced neural habituation in the amygdala and social impairments in autism spectrum disorders. Am J Psychiatry. 2009 Apr;166(4):467-75
(14) Schumann CM et al. Amygdala Enlargement in Toddlers with Autism Related to Severity of Social and Communication Impairments. Biol Psychiatry. 2009 Sep 1 [Epub ahead of print]
(15) Mosconi MW et al. Longitudinal study of amygdala volume and joint attention in 2- to 4-year-old children with autism. Arch Gen Psychiatry. 2009 May;66(5):509-16.

31 Comments

  1. Erik Johnson

    The era of mindbodyBS is over.

  2. ME Sufferer

    sorry agree with erik on this. The time for mind body bs purveyors is well and truly over, take Wessley and White with you as you close the door Gupta. May god have mercy.

  3. earthwalker

    My understanding of the Gupta program is that it is NOT mind-body BS. It works on a physiological level, rewiring neuronal circuits. This sort of approach has been proven to work with other disorders; it’s not a fly-by-night idea. This comes from my own research into brain plasticity, then discovering Gupta and starting his program. I don’t have ME but I have a disabling illness. So far, I find the program to be very helpful.

    I hope people can keep an open mind. Unlike others who charge thousands for treatments that can be harmful in the long-run, this brain retraining costs much less, is physically accessible to those of us who are homebound, and as far as I am aware, will not harm you.

    The worst is it will not do anything. You won’t even be $190 poorer because Gupta has a money back guarantee if it doesn’t work.

    In my book, it’s worth a try. You don’t have to agree of course. But I would urge people to at least do the research before disparaging someone trying to make a difference in the lives of others.

    It might not work for the most severe ME sufferers or people whose ability to create new neuronal cells has been damaged – by a virus or other means – but it doesn’t mean it won’t work for some.

  4. ME Sufferer

    Sorry earthwalker but making money from the sick and disabled with pseudo science which imo is bs and quackery at its finest is one of the lowest things I can think possible of doing.

    The pschobabble is slowly being researched out of me/cfs. I just hope those who are justifying it and who supported it are brought to book and pay for what they have done to us as a community.

    Please don’t talk to me of research with this useless last gasp attempt to keep the ball in the psycho somatic court that is truly beyond belief. The cat is out of the bag all this neuro linguo reprogramming bs is in my mind not too dissimilar to brainwashing.

    We wont stand for the abuses anymore, do you understand.

  5. earthwalker

    Well I certainly don’t support psychobabble or psychosomatic BS. I have suffered enough of it myself, believe me. We just obviously have a different view on what the Gupta program is. To me, it is definitely not working on the level of belief systems, or blame the victim, or if you just believe in it hard enough it will work. But it is working on a neuronal cell level. That is my opinion on it. I think it’s a shame not to explore ALL avenues. A virus might have caused the brain damage, but this might help recircuit the brain around that damage, offering relief to some…

  6. ME Sufferer

    I’m sorry I respect your opinion earthwalker, and understand that you believe it could be beneficial. I did not mean to attack you personally and am sorry also for your suffering.

    But I have personally and we all with this damn me/cfs have suffered at the hands of people like this for too long in their denials and obfuscation of the science that is already out there.

    We need research, we need care provisions, understanding, and mostly to take away the playing down and belittling of our disease. Not another bill for a spurious treatment (cfs/get anyone).

  7. ME Sufferer

    Sorry meant to say (CBT/GET anyone).

  8. judderwocky

    My reaction: The “overactive” Amygdala hypothesis is the last savior for those in the dying CBT field… they’re frantically trying to assert dominance over a disease they have mis-used for years. The stress reactions – anxiety and such, that CFS patients experience is most likely due to the chemical effects of RNASE L, immunoglobbin, and other immune chemicals. “Interferon-gamma (IFN-γ) triggers several antiviral mechanisms in target cells including the induction of indoleamine-2,3-dioxygenase (IDO), which degrades the essential amino acid tryptophan to kynurenine. Because tryptophan is a precursor of the neurotransmitter 5-hydroxytryptamine (serotonin), tryptophan depletion by IDO can cause mood disturbances in patients with chronic immune activation.”

    serotonin is needed to make melatonin. SSRI’s are given to people with panic disordrers.

    The side effects of interferon treatment are known to mimic CFS and many researchers are using it as chemical model of what is happening.

  9. Faith

    I’d like to know the percentage of people who’ve recovered after reading the Doctors book.
    If you’re one of them and you read this message please respond and perhaps we could have a private chat.

  10. earthwalker

    Hi Faith,
    Just want to clarify that Ashok is NOT a doctor. He has no medical training. He studied neurolinguistic programming (NLP), hypnotherapy, and meditation, some of which is incorporated into his program. He is also a self-recovered CFS patient.

  11. Kurt

    To those who think XMRV validates their ideas that CFS is biological only, I think you should do your homework about XMRV and its effects. One of the areas of the DNA that is commonly attacked by XMRV is a communication system in neuroendocrine cells. That means the parasympathetic nervous system may be broken in an XMRV infection. In that case mind-body treatments that help regulate the parasympathetic responses (such as fight-flight, and many others) may in fact be essential to management of this disease, as the natural signals to the parasympathetic are not getting through. If this is true, then I suspect Gupta’s ideas are over-focused on the amygdala, it may be that there are many other areas in the parasympathetic nervous system that are failing. Obviously if we could get rid of the XMRV then the parasympathetic functions might return to normal, but they also might still need re-training, and some type of cognitive training might be useful for that as well, basically a type of rehabilitation. I think the eventual answers to CFS will include both antivirals and parasympathetic rehab, and some of that may be similar to some of what Gupta has found to work. And more will be invented I am sure as this moves forward.

  12. Kurt

    More thoughts about XMRV causing a type of parasympathetic failure. This could lead to all types of immune system problems, hyper-sensitivity to environmental stimulants (mold, EMF, chemical smells, etc.), poor stress tolerance, hyper-sensitivity to light, pretty much any parasympathetic response that involves neuroendocrine cells would be altered. Also, with continual fight-flight, from the effects of XMRV on the neuroendocrine cells, we would experience depletions of B vitamins and glutathione, and would be shifted towards anaerobic metabolism. Bloodflow to internal organs would be reduced and all types of digestive and absorption and detox problems would result. Any of this sound familiar?

  13. earthwalker

    Very interesting Kurt. I like your thinking on this. These issues/illnesses are so multi-faceted and it will take a multi-faceted approach to recover.

  14. ME/CFS

    I am doing the program for 2 months already, and it definitively increases the quality of my life. Whether it will be a cure, I don’t know yet, however it made it very obvious: ME/CFS is a physical disease which is strongly connected to a overreactive nervous-system.

    Whether the amygdala or some other part of the brain/body is responsible vor this overreaction is not really important.

    The question is: How to calm the system down. Ashok Gupta suggests some pretty good answers and strategies.

    He continually stresses the point that ME/CFS is a PHYSICAL disease. However, an overreactive ‘body-mind-system’ is strongly interlinked with it.

  15. Ian

    Gupta and all the other brain retraining programs are just giant frauds designed to suck money out of the sick and desperate. If you want some real answers to CFS, ask yourself why is it one of the most toxic materials (mercury) in most peoples mouths. Why do we inject it into people with vaccines ? I could go on. No one wants to ask the hard questions.

  16. earthwalker

    Ian, good point about the mercury. I’ve been asking that for years. My first diagnosis was mercury poisoning. It was from a broken thermometer, which at the time I didn’t even know that mercury was toxic. Unbelievable the lack of education on it.

    As far as Gupta goes, are you calling him a fraud without trying the program firsthand? Some people are being helped, see the post before yours above. Why would you ignore that testimony and make a judgement over it before trying it yourself?

  17. Zenfishn

    just because you can string a bunch of technical terms together does not mean a thing. This sounds to me like someone trying to shove a square peg into a round hole. It is the same BS that people who have no idea of the suffering that we go through have been pushing. Friends, family, strangers say “you just need to think positively and you will feel better” BS

  18. Jeny

    More ignorant naysaying comments. Sigh.

    Well, for those who are actually interested in getting better… I have been half-heartedly doing the Gupta program for MCS, starting almost 6 mos ago (as of Nov 26!), and I saw obvious, though mild improvement within 2 days. I was in a very stressful situation at the time, and my symptoms are VERY severely exacerbated by stress. But EVERYONE’s immune system is affected by stress, so there is no reason why anyone couldn’t benefit from this as long as they give it a chance. Ironically, the people who need this the most are those who are stuck in negative thinking and patterns of anger and fear. I believe those are the ones who see the improvement right away.

    I recently started getting more serious with Gupta and related exercises, out of pure desperation, and I get better every time I focus on it. And I’m still not dedicating even 50% to the program. I went into a craft store the other day, yes during holiday season with all the noxious fragrances, with only an N95 mask, and did not have any reactions. I rarely leave the house b/c every trip out means a major brain reaction and a nasty recovery period in bed and subsequent fibromyalgia.

    And yes, it is similar to brainwashing. So you believe that it is possible to brainwash a person, i.e. alter their brain patterns via non-invasive means, but it is not possible to use the same methods to change their brains for the better? Interesting assumption.

    And yes Gupta does have an idea of what we go through, at least on terms of CFS. If you would watch his intro videos before passing judgment on someone who has dedicated his life to solving this problem, you would know that. And if you think people are ok paying $190 for 20+ hours (don’t quote me on that) of DVDs that just tell you to “think positively and you will feel better,” then I guess you think we’re all fools. But again, just a little investigation would show you that many of us are very intelligent and educated people. My healing partner was more sensitive than I was, and she has seen massive improvement; she has a job outside of the home, functions very well in society, and is flying to Asia for vacation on our 6-month Gupta anniversary this week. Before, she was wearing a gas mask everywhere in public. Of course, contrary to what Gupta recommends, we are not relying on this as our sole means of treatment. She is doing much more than I am, but my only other therapy is supplements and a half-hearted rotation diet, as I still can not tolerate detoxing. She also is not dealing with the toxic emotional issues that impede healing for so many of us.

    Do I think this can cure everyone? No. I do think you have to get rid of a large amount of your brain toxicity first. If you are in the acute phase of disease and your brain is still swimming in neurotoxins, I just don’t think you can overcome that in this manner. There have been days early on when I was so depressed, angry, and hopeless that I wanted to punch Gupta in the face. No way were the exercises going to be of any help on those days. People have to come to their own healing in their own time. If I had not already been educated in neurophysiology & immunology, learned a little about neuroplasticity and what is possible with it, and watched Gupta’s explanation of his hypothesis, then I would not have been as receptive to this. Luckily, I was in the right place to accept it at that time in my life.

    I think those who can benefit the most are those who have done a good deal of detoxing and are left to deal with the resultant damage, which Gupta explains as being a vicious cycle of chemical reactions and electrical currents. This is not so unlike the local vicious cycles described by Dr. Pall. (I doubt that either Gupta or Pall will disagree that mercury is toxic and a major contributor to CFS/MCS and other forms of EI… this does not in any way contradict his hypothesis). I have the feeling that many with CFS might fit in that category much more than those of us with MCS. However, I do think that the number of people with MCS who can heal with this is significant, and I do think I am going to be one of them. Scratch that… I KNOW I am already one of them who has done SOME healing thanks to his methods. So maybe it is going to suck when people learn that I recovered using Gupta and will thus assume that I had a psychiatric illness. I will live with that in exchange for living in isolation, poverty, illness, and constant fear of reactions and death. I refuse to let my ego and stubbornness steal any more years of my life from me. I won’t poo-poo a potential “way out” of this awful existence in an attempt to prove to the world that I am “really” sick. Staying sick for a decade does plenty to validate the point that you are “really” sick. But the fleeting opinions of others is not worth even a week of my life, much less a decade or more.

  19. gupta promotions sickens me

    This self promotion is something else. Psuedo science and bullshit all to make a couple of quid for this joker at the expense of the sick and disabled.

    Disgusting!

  20. 22 years and counting....

    I pity those of you that are perhaps in the earlier stages of this illness and cant see further than the mantra “It’s a virus”. It’s no virus. It perhaps once was but not anymore. It’s undoubtedly a ‘brain’ problem caused by the initial virus and short of brain surgery you’ll never get better until you open your mind up to all the possible treatments. Mind/body BS? Whats that all about? Some of you so ignorant that you think that that mass of brain in your skull doesn’t have anything to do with how your body works???

  21. valentinelynx

    I would like to make an observation. Many people with an investment in a theory or theories of the etiology of CFS appear to be now feeling defensive in light of the findings of the WPI re: XMRV & CFS. One of the most popular responses is to postulate that XMRV is an opportunistic infection, like many other viruses that have been considered to be possibly the causal pathogens. According to this theory, XMRV, like EBV, CMV, etc., would be acquired or reactivated when the immune system is suppressed by some other insult(s), such as sympathetic overactivity, toxic overload, emotional/sexual abuse, etc. This is indeed a theory that must be ruled out before establishing XMRV as the cause of CFS.However, if XMRV were another such opportunist, it should be found in equal (or at least significantly elevated) frequency in other conditions characterized by immunosuppression, such as HIV, severe stress, diabetes, chemotherapy, etc. etc. This is something to keep in mind when evaluating the potential of XMRV as the cause of CFS.

  22. CJ

    It is sad that lack of understanding and validation of CFS by family members and doctors has created such a need in us to prove it is physical and not psychological. I have studied neuroscience, physiology and psychology and I have come to believe that these distinctions are arbitrary and man-made. Emotions and psychology do not exist as such without the brain and body, and vice versa. We are complex beings and should realize that everything affects everything else. I tend to say that my illness started with an infection, but I was also under psychological stress (who isn’t). Does that mean it is a psychological illness? I say NO! For others, maybe it starts with a severe psychological trauma. Does that mean it is not a physical illness? Again, I say NO! I don’t think their is anyone who can deny that the body affects the mind and the mind affects the body. The relaxation response (a physiologic response mediated by the parasympathetic nervous system) is the body’s natural state for healing. Through techniques such as biofeedback and meditation people can learn to control previously unconscious body processes with their conscious mind and facilitate healing. I have heard that adept yogis have been able to completely control inflammatory processes when injected with an irritant substance. When we learn to play a new instrument we “re-wire” our brain. So why then, if this illness has injured my brain, might there not be techniques designed to “re-wire” it and help regain some of my lost capacity. It seems obvious to me that my body and brain are stuck in an overactive fight-or-flight response all the way down to the level of cellular immunity (yes, they are connected) that has left me completely flattened. While I know nothing of Gupta’s work or suggestions, I think the concept is very plausible. There is a saying, “Happiness is an inner state, influenced by external conditions but not dependent on them.” I propose the same can be said about health. If I had spent the last 6 years practicing to be a buddhist monk instead of taking all the boxes full of western medicines, maybe I would have been better off. And yet here I am, struggling to decide which medicine or supplement to try next. I hope each and everyone of us finds the fastest road back to health.

  23. keir

    I would urge the author to look at glutamate/NMDA excitotoxicity (a form of brain damage common to most diseases that affect the brain including Traumatic Brain Injury) and the resulting effects this has on the brain. Years ago I read an interview with an EEG researcher who found that all ME patients had a form of microseizure which makes a great deal of sense when one thinks about how this would affect brain function. When the brain “resets” for a tenth of a second every few seconds, it would result in problems with attention, focus, sleep (via alpha/delta wave anomaly) startle reflex (known to be dysfunctional with ME,) memory, and especially, the central sensitization of hyperalgesia, etc. These are the exact things found with ME. As well, DeMeileir has mentioned the finding that ME patients have a form of “light epilepsy” that disturbs sleep. No wonder I literally didn’t reach deep sleep for 10 years (until getting prescribed long acting opiate pain meds that continued to work into the sleep period.)
    The use of GABA agonists is based on this premise since it is the major inhibitory system to glutamatergic excess; another major inhibitory system is the endorphin system and it may vary in patients which system is needing to be bolstered to produce the “anti-seizure” affect needed to reduce symptoms. My own experience with opiates has convinced me of this hypothesis; I have had no narcotic effects and have only improved since my pain meds have increased. Basically, opiate pain medications work as a form of endorphin replacement therapy in those whose endorphins systems are faulty. These ideas are further bolstered by findings of elevated glutamate in FMS patients and insufficient beta endorphin in ME patients.
    Gupta is forgetting that a major component of this illness is the cardiomyopathy (infection of heart nerves in one of the heart valves by viruses such as herpes causing circulatory dysfunction) and this leads to a form of bacterial toxemia via low oxygen state which explains the “lock jaw light” muscle rigidity that we experience and poor exercise response (this is likely to be an endogenous process in most although those with “pure pain only” FM–and no poor exercise response–may have true, acute ciguatera poisoning or other toxemia such milder organophosphate poisoning causing the effect since they don’t have the viral cardiomyopathy.) It’s highly likely (based on my own suspicion) that this toxemia is also related to the NO/ONOO dysfunction and it is known that the NO/ONOO cycle also contributes to glutamatergic excitotoxicity and could also be a source of the hyperalgesic effect and cognitive complaints for all ME and FM patients (probably primary in FM and secondary in ME.) In my own case, the illness did not start in earnest until after the initial 2 month long virus (which was like no flu in the world; having serious cognitive aspects to it) and a light recovery ensued for about a month and then worsened as I tried to exercise (I was an endurance athlete) and started having episodes that I now know were heart arrhythmias (my heart felt like it stopped and my vision and hearing were affected with a tunnel vision-like effect and muffled hearing; classic arrhythmia.) I believe that as the cardiomyopathy worsened and the toxemia developed, my pain and “lock jaw light” got worse and worse (especially since I kept trying to exercise) along with the other symptoms typical of this illness.
    Although the brain is a major component of this illness (both in direct affect on the CNS and peripheral effect on the CNS caused by the toxemia) there are other systems of the body that are affected directly (not just in a “top down” manner via the CNS affect on the body) such as the heart and it it likely that the illness doesn’t really begin until the heart is affected by viruses.
    If XMRV pans out, I would be willing to lay odds that it works in the manner described by hypothesis number 2. This is like the case of AIDS in which the pathogens that kill the person are other pathogens and not HIV which just allows the immune system to be damaged and allows other pathogens to do the dirty work.

  24. CN

    Thanks for spreading the B.S. After Emory, Mayo Clinic has been Dr. Reeve’s closest partner in his “CFS” studies. It remains in the interest of the CDC and insurance companies to keep belittling the organic facets of the disease and suggest stress came first, not any virus. Lets see how many kids with “CFS” who can’t attend grade school get signed up for this program of a non-doctor who supposedly cured himself. Money-back guarantee?

    Even Bernie Siegel admits there’s only so much mind-body stuff, prayer, attitude, etc. can do. That’s why people need doctors. This crap is why anyone stuck with the “CFS” label can’t get a doctor even if they’re half-dead.

  25. Dave

    “Amygdala retraing” is a fancy medical term! Let’s see if I Change the name to “Hippocampus retraining” or ” hypothalamu retraining’, or oblangata retraining”.. and practice yoga, relaxation, positive thinking and positive affirmation and many techniques of CBT & DBT…described under Gupta’s retraining..
    What would be the outcome!
    Same……or more …. or less…………..
    That would be an interesting study that any research university can promote… and fund .. with money back garantee…

  26. shewolf

    I quit reading at “This is probably why many patients do recover from ME/CFS and Fibromyalgia yet have not taken any anti-viral medication.” Not many people recover.

  27. truthinhealth

    While I like to stay open to possiblilties, it is true we are leaving the “stress induced illness” theory on the shelves for now as more viruses, retroviruses are found to cause disease along with genetic predisposition. If there are those who are helped with the amygdala retraining that is great, but to focus on that and not the science behind the cause is down right dangerous. We must take the xmrv cause seriously, as the the other 2 retroviruses are deadly so this one probably is too. No they may not cause disease directly, but they lead to opportunistic infections or cancer that lead to death. What if Drs in the “80’s had insisted on amygdala retraining for AIDs patients?

    While there is no treatment yet for real CFS/ME, sure try anything that does no harm and that your pocket book can afford, but let us keep up the science in the direction that offers the most promise. By far.

  28. earthwalker

    I totally agree with you TruthinHealth. One should not abandon viral and other approaches for brain retraining. It really is a tool to use along with everything else we do to support health and vitality – diet, lifestyle, personal growth, etc. However, I’m not sure if it is accurate to compare it with the AIDS virus – as far as I know the damage from HIV is to the immune system, not to the limbic system. Amygdala retraining addresses limbic system dysfunction. It’s also important to remember that there are so many factors contributing to ill health, and ALL of us have multiple toxic injuries and unique biochemistry and histories. Most likely, there will never be a “one-size-fits-all” cure-all for this or any illness – there are just too many variables involved.

  29. Maureen

    Looking in Yahoo brought up your blog – I’m glad it did, thank you.

  30. Lily

    This seems to be a recurring theme, that people tend to dismiss the Gupta Programme because Ashtok says that the illness may have something to do with the brain and neurological system, which makes people believe he is saying that those who suffer are just having mental problems. That’s not what he’s saying at all. He says that a combination of factors, including viral, emotional, environmental, all contribute to the illness because the amygdala sees all of these as threats, and therefore becomes overactive and therefore the body becomes dysregulated. As with any illness, even if it began as a viral illness, it will cause psychological stress due to ongoing and debilitating symptoms that are physically difficult to cope with and that change the normal lifestyle of the person affected. Those obviously will take a toll, which contribute to the amygdala becoming affected, while it is already sensitized due to a possible virus or whatever else. It all makes sense, I wish it wasn’t so dismissed just because there may be a mind and body connection to the illness. It doesn’t mean sufferers are crazy. They are usually type A high achiever types. I am in no way affiliated with the program. I am taking the program, but I do not work for them, I’m just letting everyone know my opinion.

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