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Why is Mayo Clinic doing Amygdala Study?

Discussion in 'General ME/CFS News' started by andreamarie, Jan 12, 2010.

  1. andreamarie

    andreamarie Senior Member

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    Sorry re spelling. I'm upset. The study is described as investigating the Mind/Body connection. I feel like they are just laughing in the face of any serious research.
  2. _Kim_

    _Kim_ Guest

    I hadn't read about this. You can leave a comment.

    From Prohealth:

    On Jan 11, the Mayo Clinic Rochester (Minnesota) listed “A Pilot Study of Amygdala Retraining Program in Patients with Chronic Fatigue Syndrome, Chronic Fatigue and Fibromyalgia” with ClinicalTrials.gov.

    This six-month trial of Ashok Gupta’s Amygdala Retraining Program™ (www.prohealth.com//library/showArticle.cfm?libid=14508) will include a pilot cohort of 30 patients.
  3. Kati

    Kati Patient in training

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    It's totaly upsetting. Shouldn't they be world leaders in SCIENCE, and research BIOLOGY of the disease? How insulting!
  4. CBS

    CBS Senior Member

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    Mayo and Depression

    The Mayo study is one of the top efforts listed on the CDC's five year plan -III. CFS Public Health Research Program Activities - How CDC plans to meet its Goals.

    The Mayo Clinic site on CFS has depression at the TOP of a list of possible causes: (http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395/DSECTION=causes).

    There is a nice incestuous symmetry here. The Mayo uses the CDC Empirical criteria to find depressed patients (in the 'Mayo Clinic Rochester Epidemiology Project'), and then the CDC gets to claim that CFS = depression.
  5. Marco

    Marco Old blackguard

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    Hate to be the odd man out here but I do believe that there are a number of common techniques that can help alleviate the symptoms of any disease and there is a fair amont of evidence implicating an abnormal stress response in ME. That doesn't rule out another organic causal, precipitating factor nor does it suggest the Gupta programme can deliver a cure.

    If you read Gupta's original paper (can't find the link at the moment) he is taking about structural changes in neural connections to the amygdala, that is structural organic changes, and isn't the amygdala pat of the body?

    Its unfortunate that the Wessley's of the wordl have forced us back into this old Cartesian mind/body duality and that we immediately get on the defensive when the brain is mentioned. After all the brain is just one of the parts of the body that allows us to act and interact with our environment.

    Given robust objective outcome measures - who can complain if it is shown to have some benefits (and yes I do appreciate the politics).
    sianrecovery likes this.
  6. CBS

    CBS Senior Member

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    The one thing that I would add is the need for a well defined cohort/appreciation of what CFS really is. Way too much noise if 40% of those studied have a Major Depressive Disorder and not CFS.
  7. PoetInSF

    PoetInSF Senior Member

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    I think it's a worthwhile study. Gupta is charging $150 and it's a good thing that someone is doing a scientific study before desperate people shell out more money. Besides, brain injury is as an interesting hypothesis as retrovirus infection hypothesis that Nevada people have been pursuing for the past 25 years to no avail.
  8. kurt

    kurt Senior Member

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    Good comment, last I checked the brain was considered a physical part of the body. Although I find it strange that Gupta took such a narrow view of the 'reprogrammed stress response' problem. Really it is the hypothalamus that would be implicated in that situation, or the amygdala+hypothalamus combination. But the amygdala has been a hot topic the past few years.

    And I like that point that the over-emphasis on the stress aspect of ME/CFS has forced many people to regress to a physical-only explanation. They must then ignore the past 30 years or so of systems biology, the emergence of integrated views of how the mind/body duality really works. There is no voodoo in that, the mind literally can change the physical structure of the brain, and the environment can influence the way the mind works, thus stress matters, and is probably involved in triggering many chronic health problems, including cancer, heart disease, diabetes, etc. And much of our stress response is programmed in during childhood, so if as adults we end up in some situation or environment that is perpetually stressful to us personally, we have little to say about how we will respond, the body just reacts based on early life programming. Add to that genetic immune and detox abnormalities and a high pathogen load (the famous 'flu-like illness') and the combination can rewire the brain, via the hypothalamus. Really, I think the amygdala is just the gate-keeper, it is the hypothalamus that creates the dysautonomia.
    sianrecovery likes this.
  9. cfs since 1998

    cfs since 1998 *****

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    I actually tried the Gupta Programme because it sounded interesting, but my opinion of it actually lessened the more I watched. It's a complete sham. Plus, in a rather irritating fashion, Gupta speaks very slowly and says the exact same things over and over again; he is very verbose, repetitive, and redundant--I think in an effort to make the program seem more substantive than it really is. As far as the Mayo Clinic, as far as I'm concerned, they've long lost all credibility, at least in regards to this disease.
  10. anne_likes_red

    anne_likes_red Senior Member

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    Off topic'ish....

    Kurt - nice to see you. Again.
    I put two words into a blog search last night and yours (I'm sure it's the same Kurt :D) popped up.
    Very interesting blog! Good stuff.
    (Small www .)
  11. fresh_eyes

    fresh_eyes happy to be here

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    Gupta advises people to ignore their symptoms and believe they are not ill. That's the 'retraining'. He also runs a Corporate Training Company and a Stress Management Clinic.
    http://inspiredtocreate.gaia.com/
    Total quackery IMO - which doesn't mean meditation and positive thinking aren't helpful, because they are, and also doesn't have any bearing on whether our brains are damaged somehow, because they probably are.
  12. Frank

    Frank Senior Member

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    I tried Gupta, didn't work for me
  13. starryeyes

    starryeyes Senior Member

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    The Mayo Clinic is not our friend. Over the years PWC have posted about how horribly they've been treated at Mayo Clinics.
  14. dipic

    dipic Senior Member

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    Ugh, where are all the sane people (scientists) in the world?
  15. Zona

    Zona

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    I agree. The two don't have to be in opposition ie brain/miind vs body. The brain IS part of the body and they do influence each other both ways too. I though Gupta believes that a virus or toxin injure the amgydala, which would be a physical thing? I don't think any treatment like this would be the total solution. However I do think we'll eventually find that a bit of this and a bit of that all taylored to our individual situations and bodies will be what helps most. In that same vein I also do not belive that it all revolves around XMRV or that some magic pill, antivirual or whatever will cure us either. As may girlfriend who also has cfs and mcs likes to point out "don't throw the baby out with the bath!".
  16. IamME

    IamME Too sick for an identity

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    Because they're idiots.

    It's not always a two way street: the brain/body can clearly exist without the mind but not vice versa. The two are very much in opposition politically, economically and practically when it comes to "controversial" diseases.

    In a newspaper interview Gupta describes his own illness as burnout (during which he "self taught himself neurology") and ascribes emotions as the cause and insists there is "no underlying disease".
  17. IamME

    IamME Too sick for an identity

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    Sounds like politically correct postmodernist Wessely-friendly babble to me. And just why are people being "regressive" -- a very supercilious stance to take -- if they state the truth, i.e. that M.E is an organic pathological disease and not a BPS/FSS/psychosmatic "gray area" (to quote the psychs). Do you have some sort of issue with the organicity of this disease, which you presumably wouldn't with say, cystic fibrosis or cancer? Incidentally there is no RCT evidence whatsover that CBT improves cancer survival rates and overwhelmingly most cancer patients have not even heard of CBT, nevermind Gupta's quackery. Yet policy makers, the CBT school et al persistently lie through their teeth about that to try to "soften up" pwME.

    Clearly Gupta (not a medical doctor btw) has chosen amygdala to distance himself from the Anthony Cleares and PD Whites who are already obsessed about about the HPA axis (as it's perceived to be the "psychosomatic" interface). And he wouldn't get any customers if people thought he was just window dressing CBT.

    There is no good evidence that "the mind can chance the structure of the brain". Behaviour can, perhaps, but behaviour is not simplyt "the mind". However it doesn't seem of much use in Alzheimers, does it? Despite the best efforts of crossword-puzzle pundits, no-one has been able to satisfactorily slow or avert dementia by sheer mind-effort so it remains pretty much at the level of basket weaving and is why Alzheimers patients and carers justifiably get angry if they're denied access to drugs.

    Honestly, pavlovian conditioning as an expalantion or part explanation for this disease is just silly, and very much at the level of "dinosaur medicine". It's interesting that Gupta, Parke, CBT therapists and all those other parasites home in on ME/CFS (usually listed among alcoholism, phobias, interpersonal probs, "stuckness" on their sites/bumf) rather than including diseases like MS, leukemia, decompensated cardiomyopathy, etc. I guess they're just not "non cartesian dualist" enuff. ;)

    A side effect of XMRV or whatever testing along with good criteria will probably be to exclude such patients from the cohort, except for a few gullible mild/in-denial people, like those who still claim stress is very important in H Pylori or that MS can be cured by the right diet.
  18. shiso

    shiso Senior Member

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    To Mayo Clinic - please do helpful research or no research at all

    What Fresh Eyes said (or see LaurelB's eloquent post re the Gupta program in the "R U Amygdylized?" thread).

    I'm going to elaborate anyway:

    I think Poet makes a good point that brain injury is an interesting focus for research (I happen to agree that researchers shouldn't just focus on viruses). I agree with Kurt that "mind" (e.g. severe stress) can be a precipitating factor for all kinds of physical disease. I also think it's been observed that something in the pathology of CFS makes us less stress-resilient compared to when we were healthy. Also agree that it's a shame that the skepticism about CFS as an organic disease by the medical establishment has caused patients to have a knee-jerk reaction against any study that involves "stress" or anything that doesn't sound biological the way viruses (or retroviruses for that matter) sound biological.

    All that being said, I still believe that this particular "treatment" is a clever, well-designed sham, at least as a physical treatment for ME/CFS, and that the fact that Mayo Clinic is taking it even semi-seriously shows how they view the disease.

    The purported "brain retraining" program peddled by Gupta is NOT about getting your mind to fix a brain injury or structural changes in the brain caused by stress (assuming any such damage was caused in the first place). As far as I know, you can't cure a brain injury or undo a structural change (even if it was caused by "stress") simply by thinking positive. Gupta is clever enough to know that too - significantly, he never says anything about brain injury or neuroplasticity; instead, he uses the cleverly vague term "trauma". He argues that said trauma to the amygdyla is temporary and reversible: all you have to do to fix it is to psych yourself out that you're well and - voila! (or not)

    My criticism of AR is not that mind/body interventions (which is what AR amounts to) have no benefit (I tried the program and it did teach me ways of reducing stress, which was nice.) My criticism is that the so-called "retraining" is on its face NOT a credible medical treatment for improving the actual physical symptoms of ME/CFS (PEM, POTS, memory lapses, word-finding problems, immune abnormalities, difficulty walking, inability to generate anything close to pre-illness levels of mental and physical energy), whether the culprit (or part of the culprit) for the disease lies in the brain or not. An elaborate mind trick does not a ME/CFS cure make.

    If this is clear as day to a lay person/patient, what does it say about the views of the elite medical researchers at Mayo Clinic about our disease that they are spending time and money on this study? Put it together with Mayo Clinic's dismal record of treating CFS patients in the past and take a look at their pleasant website on the disease (which gives the impression that CFS is a vague malady and promotes GET as an effective treatment) - the answer seems pretty clear.

    A worthwhile result is if the study uses patients diagnosed by the Canadian Consensus Definition who do not have co-morbid anxiety or depressive disorder, and finds that AR does not lead to permanent improvement of symptoms specific to CFS, especially PEM. That way, as Poet said, more CFS patients will not waste their money (like I did) actually hoping to cure their disease, and force Gupta out of the ME/CFS research field. (I'm fine with him offering his program with less grandiose claims to a wider audience, just as long as he's not claiming he has a cure for this disease.)

    A damaging (for ME/CFS science) but easily imaginable result is that the study uses Reeves' disease patients, e.g. patients with physical manifestations of anxiety or depressive disorder (which I personally believe AR WOULD be able to cure - positive thinking, alternative nostril breathing and not obsessing about your body should do wonders for such patients) and promote Gupta's program as an effective treatment.
  19. rhiannon

    rhiannon

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    I've also followed Ashok Gupta's Amygdala Retraining Programme. I can honestly say that it opened my eyes to how negative my general attitude was. I didn't think I was a negative person until I started to methodically examine my thoughts. The programme is not a quick fix. It takes a certain amount of discipline and commitment to get to a better place. It's about taking responsibility for yourself and your health. I discovered that I had some fears which I wasn't really aware of, such as fear of being judged at work. What the programme is trying to do is generate self-acceptance and love. Now, my reasoning when starting the programme was that that can't be a bad thing, ill or not. In essence, the basis of the programme is Buddhist philosophy and mindfulness. When following the programme, what you're doing is just noticing your thoughts and than telling yourself not to be negative. It's self-coaching. I find I'm more positive now and not indulging in self-pity. They do say ill-health is a dis-ease of some sort, don't they? We need to look after not just our bodies, but our emotions, spirit and mind as well.
  20. PoetInSF

    PoetInSF Senior Member

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    Sounds like the Gupta thing is a disguised version of CBT then. I'll have to join the chorus and question why Mayo is wasting money on yet another study of CBT when CBT is already well understood. If their intention is to refute Gupta's claim of 80% recovery rate, just calling it CBT would do.

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