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

By: CN

CN — Sun, 28 Feb 2010 20:48:55 +0000

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.

By: keir

keir — Sun, 13 Dec 2009 02:57:59 +0000

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.

By: CJ

CJ — Tue, 08 Dec 2009 05:32:21 +0000

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.

By: valentinelynx

valentinelynx — Mon, 07 Dec 2009 09:22:05 +0000

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.

By: 22 years and counting....

22 years and counting.... — Thu, 03 Dec 2009 14:17:16 +0000

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???

By: gupta promotions sickens me

gupta promotions sickens me — Mon, 23 Nov 2009 23:05:14 +0000

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!

By: Jeny

Jeny — Fri, 20 Nov 2009 17:14:14 +0000

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.

By: Zenfishn

Zenfishn — Fri, 13 Nov 2009 14:16:56 +0000

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

By: earthwalker

earthwalker — Mon, 09 Nov 2009 05:29:01 +0000

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?

By: Ian

Ian — Sun, 08 Nov 2009 23:57:44 +0000

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.