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Why is Mayo Clinic doing Amygdala Study?

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

  1. Advocate

    Advocate Senior Member

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    I agree with andreamarie. Would it help googlers find this string if one of the moderators corrected the spelling of the relevant part of the brain in the title of the string?
     
  2. susan

    susan Senior Member

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    The Gupta program has not cured me. However it has taught me heaps to "watch" my body in a new way, relieving it of stress and hoplessness. Gupta states it is not CBT or Positive psychology. I know 3 people bedridden having better lives than me through his program right now....one in bed for 13 yrs. My brain stops me from getting into a fancy debate. I still like the damaged Amygdala theory. It is the cause of PTSD it is said. Why cant the damaged Amygdala affect us in a similar way after a bad flu or a car accident that disrupts our bodys systems. This could explain why the body goes more into Sympathetic mode, throwing the body out of balance, creating a cascade of symptoms as a result. It was the best $190 I have paid without a cure as it has changed me and my total approach to life living with this illness.
     
  3. Stormyskye

    Stormyskye

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    Why does help have to be complicated, expensive, drug filled, or fit into the box of typical medicine? Clearly, that doesn't work at all or none of you would be here seeking answers. While I haven't participated in this particular program, I've used similar retraining to help me recover. And it was free. I stuck sticky notes all over my house that simply said "I am healthy".

    Sounds silly and worthless? Not so. It was a constant reminder to me that this was the goal and nothing less would do. Each thing I did each day, each choice, affected the outcome. What I ate, what I did, how I reacted. Each time I went to put bite of food, healthy or garbage, in my mouth, there was a sign in front of me that reminded me of the goal. Keeping and maintaining a positive attitude is hard work but it's do-able.

    I also used a number of herbs and supplements, bouncing, pacing, etc. to achieve that goal. But collectively, it worked.
     
  4. Robin

    Robin Guest

    Done!

    I have nothing to say about Mayo clinic or Gupta, but I do wish these kinds of studies would use more objective measures of physical exertion rather than questionnaires.

    http://clinicaltrials.gov/ct2/show/NCT01046370
     
  5. Marco

    Marco Old blackguard

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    I would urge reading Gupta's original paper rather than the ads before jumping to any conclusions :

    http://www.ei-resource.org/articles/chronic-fatigue-syndrome-articles/unconscious-amygdalar-fear-conditioning-in-a-subset-of-chronic-fatigue-syndrome-patients/

    In fact read it in conjunction with the Light (Dr's) research Cort summarised from the Reno conference.

    I feel there's a confusion between the pyschiatric somatisation perspective which posits (without describing mechanisms) that symptoms are caused by aberrant beliefs and the growing field of psychoneuroimmunology and systems theories of cognition which suggest that cognitions and emotions arise from the body and not vice versa.

    I had actually considered this programme just before the XMRV story broke but the more I read about the treatment (I can live without the redundant lecture) the more I realised he is using common minfulness techniques that I'm already familiar with.

    I can't say I've ever been accused of being 'politically correct' - quite the opposite in fact. I'm just not prepared to be a passive victim to this disease and I'll do whatever I feel might improve my quality of life while the scientists work on coming up with the magic bullet.
     
  6. JayS

    JayS

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    Wow.

    What a negative thread.
     
  7. klutzo

    klutzo Senior Member

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    I agree that Mayo Clinic's record with CFS and FMS is less than stellar and I don't trust them. I have no answers, but here are a couple of things to think about:

    1. How many of you have had a Neuropsychological evaluation?

    My Neurologist sent me for one, after his initial exam showed some evidence of brain damage, ie. I had a positive Rhomboid, an abnormal QEEG and an abnormal BEAM scan. He told me it is the most thorough and affordable way to find out if someone has brain damage, to what extent, in what areas, and if it can be treated. He was appalled that I'd had a serious closed head injury in a car accident causing unconsciousness, but had never been evaluated by a Neuropsychologist to see if I had brain damage.

    The exam takes about 6 hours, spread over 2 days, so you don't get totally wiped out. I'd been feeling much better than usual, and was sure it would be yet another normal test result, making me look like a nut case. Wrong! I scored as severely brain damaged. My scores were so bad that my government disability revue was changed from once every 3 years to once every 10 years, which I am told is almost unheard of.

    Where this gets interesting is that the Neuropsychologist told me that my brain damage was in the right areas to have caused all of my problems, including what was diagnosed as fibromyalgia, migraine, Lyme Rage, dysthymia, etc.

    He also told me that in his opinion, even though I met the diagnostic criteria, I did not have CFS! He told me he had seen Neuropsych evaluation results on many, many CFS patients, and that they all have a distinct pattern of brain damage that is unique to CFS and only CFS. He felt this pattern was so unique that he said he felt he could pick out and diagnose CFS patients just by looking at their test results, without even meeting them or seeing their other medical records.

    What my doctor said is strictly anecdotal of course, but if this is true, then research could be done to replicate this and it could be a definitive diagnostic tool. It would not be that expensive to do either, since this type of testing uses no expensive medical equipment. Neruopsych test results show physical brain problems and any secondary psychological problems arising from the brain damage. There is a bias towards the physical as cause, rather than the other way around. I noticed this welcome difference right away, since I used to be a Psychiatric Social Worker before the illness knocked me out of the work force.

    2. How many of you have had your neurotransmitter (NT) levels tested?

    I have, by an M.D. who practices Integrative medicine. I was told by him that NT levels change from moment to moment, because every thought we have changes them. Despite this, he said research has shown the most consistent levels can be obtained from urine at 10:30 am, so that is what we tested. My dopamine was too high, which explains the horrific manic reaction I had to the dopamine raising drug Welbutrin, my GABA level was too high, which was logical since I take benzodiazepeine drugs, and all the rest were in the basement, well below normal. The dismally low serotonin level I had would be a physical explanation for my secondary dysthymia, for example, but could I change that over time with positive thinking? I've had no success with that after many years of meditation and visualization, but I have a melancholic temperament genetically, since both my parents did, and I think that is a variable here also. At this time, it is believed that we cannot change our genetic temperament to any great extent.

    I am not implying anything here, since I get more confused the more I think about it, but am offering up this anecdotal info, FWIW.

    klutzo
     
  8. susan

    susan Senior Member

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    I just had the urine test from Metametrix revealing abnormally high neurotransmitters, adrenaline, seratonin, dopamine. Did it with Neurosciences last year....same result....Overmethylation?
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Susan,

    A urine test shows the neurotransmitters you are excreting and doesn't necessarily reflect you body levels. If you have more than enough you may be excreting a lot of a neurotransmitter...On the other hand you may be excreting a lot of a neurotransmitter and depleting your body level. So this is a tricky test to interpret. Least that is how it was explained to me.

    Sushi
     
  10. susan

    susan Senior Member

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    Thanks Sushi,
    He said I am like a wash a basin with the tap running and the plug pulled out......I make them and continually use them up..
     
  11. Mithriel

    Mithriel Senior Member

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    The neuropsychological tests described by Klutzo seem a much better thing to be looked into than more psychological studies.

    I have diabetes and my friends has cancer. No one treating either of these has suggested CBT or any other psychological treatments.

    Psychological treatments are for people who have psychological problems. I have no doubt they can help people with anxiety or depression. No amount of thinking will fix my pancreas, my friend is getting toxic chemicals poured into her body.

    We are not anti these treatments because of the involvement of the psyches with CFS we are anti them because they are inappropriate for the physical symptoms we experience.

    Mithriel
     
  12. Marco

    Marco Old blackguard

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    Patients with chronic illnesses and chronic pain (including heart disease and cancer) are offered mindfulness meditation to help them with their symptoms. This in no way suggests that their illnesses are psychological and it is NOT CBT. I believe the techniques suggested by Gupta are mindfulness based.

    So, in the absence of 'toxic chemicals' available to treat ME is there no value in trying to moderate the symptoms?

    The only harm that I can see is if treatments that have only palliative value are presented as a cure or deter research into organic causes and cures.

    I don't know enough about the Mayo clinic (why do I always think of the old Airplane line - hold the Mayo?) to know if this is an innocent attempt to find palliative treatments or something more sinister.

    PS - I realise Gupta advertises a high 'cure' rate. If you look at his orginal paper he is much more guarded - talking about the treatment being applicable to a sub-set.
     
  13. Mithriel

    Mithriel Senior Member

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    Marco, my point is that these treatments are not rolled out routinely for patients with diabetes or heart disease or cancer. They are definitely not touted as a cure. My friend is not being told she should stop believing she has cancer so she won't have it any more.

    I don't have a problem with anxiety, I don't need to meditate, I am not depressed. Mindfulness has nothing to offer me and if I wanted to try it I could buy a book for a tenner.

    I am INCENSED that they are giving money into looking at this sort of thing while there are PHYSICAL abnormalities they could be studying.

    Give us a treatment, then give those of us who need it psychological help. That way round. Now. I want what is given as a right to every other illness, no more no less.

    Mithriel
     
    lastgasp likes this.
  14. anne

    anne Guest

    Right. I think if Mayo weren't totally useless on CFS, it might be a different story. But they routinely turn patients away, they tell patients that CFS "doesn't mean anything," and they offer them no help at all. Nothing. So to turn money and energy into something like this--as opposed to , say, educating their doctors, or doing actual medical research seems to speak volumes about their view of the disease.
     
  15. PoetInSF

    PoetInSF Senior Member

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    The difference between diabetes/cancer and CFS that CFS is very poorly understood by scientists and patients alike. Hence CFS patients tend to suffer from their own ideas and imaginations about their condition more than diabetes/cancer patients do. CBT's aim is to dispel false beliefs, recognize the reality, adapt to their limitation and do the right thing given what little is known about the disease rather than getting lost in the imaginations.

    I suppose it's a catch-22: one must first dispel the belief that CBT is a psychologist's conspiracy before he/she can get onboard with CBT.
     
  16. anne

    anne Guest

    Do you have some sort of data to back this up? I would think cancer patients, for one, certainly might suffer from their imaginations about the illness, given it can be fatal.

    (ETA) I was sick. I was given an antiviral. I got better. I didn't suffer from anything I could imagine, but rather a messed up immune system and crazy viral loads. I'm lucky, certainly, but the Mayo Clinic won't even talk about viruses in CFS, even with people who clearly have a post-viral case. Instead of helping people cope with their illness, perhaps they should focus on trying to heal them.
     
    lastgasp likes this.
  17. Robin

    Robin Guest

    Because so little is known about the etiology of CFS I'd love to know what the "reality" is!! The CBT you're describing sounds like the UK type where patients are encouraged to think that CFS is not a physical illness and push them on treadmills. Maybe you should elaborate a little more because I have a feeling you're going to get a lot of negative feedback on that comment.

    Regarding CBT: it can be anything. It's just a tool. All it involves is using thoughts to influence behavior. A smoker can could use it to think about a blackened, cancerous lung in order to fight cravings for cigarettes. A diabetic could think about what it might be like to go blind from diabetes in order to make better food choices. I use CBT by reminding myself about the pain of a crash, so that I'll lie down instead of push myself through whatever activity I want to do. CBT is not evil, but certainly how it is used in the UK right now seems abusive.

    That would be the obvious wisdom. This is one of those situations where substituting cancer or AIDS for CFS illuminates the problem.
     
  18. kurt

    kurt Senior Member

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    How interesting! I also had a brain scan early in my CFS, but an MRI, and they did find some unexplainable areas of damage or old cysts but said it was not a problem. Right, I wonder if it was in the same area your Neurologist found problems.

    Does anyone else see the irony here? CFS obviously involves some brain pathologies, and some people are objecting to the study of a rehabilitative brain treatment program, an attempt to 'rewire' brain connections to the amygdala. And that IS possible, although Gupta does not use proper terminology, he should be talking about brain plasticity. Also, I think he should be using terminology like 'rehabilitation of selective CFS brain pathologies' rather than 'high cure rate for CFS' which is an obvious exaggeration if you read reports of people using his program.

    Regardless of Gupta's use of terminology, there is no question that it can be useful to many PWC. And mental activity does lead to physical changes in the brain, read 'Memory's Trace' about studies at Woods Hole Laboratory that prove this. The brain learns and changes every day of our lives. When we learn anything new, the brain changes, and that includes all types of learning, including learning due to sensory inputs as well as learning due to our own mental visualizations and meditations. No, that type of brain changing will not cure infections or alter detox processes directly, but the brain is integral to so many biological functions, who knows what can happen in any given case when brain functions are altered. Also, stress levels are not our problem, it is the stress response that is at issue. And a poor stress response under conditions of a stressful environment can and does alter immune functions, and deplete many of the systems involved in CFS. Then some infections can re-activate and worsen the situation. We can not entirely separate out mind and body, or brain and metabolic health, they are part of a team working together. The idea that we can alter our health through changing our stress response is very rational and there is good evidence it works sometimes.

    There are also physical interventions to the amygdala that can help CFS. Here is some interesting anecdotal evidence about an ultimate treatment for the amygdala. I once corresponded with a woman with CFS who had a brain cyst on the amygdala. One half of the amygdala was removed and that cured her CFS as a side-effect. Something to think about, her amygdala was overactive clearly and that was driving her CFS. That extreme physical change to the amygdala might also have acted on the hypothalamus, reducing its inputs. So a little hard to interpret that case, hard to understand how removing part of the amygdala fixed CFS, but it really happened.

    And there are probably other pathologies of the amygdala and hypothalamus. For instance, if some infection is getting past the BBB and creating neurotoxins that disrupt amygdala or hypothalamic brain function, then solving that infection might also calm down the brain. It may just be that there are multiple causes of amygdala and hypothalamic dysfunction and multiple ways to treat an overactive amygdala and/or hypothalamus. And some people may do better with one treatment modality than others. We are not all the same.
     
  19. Mithriel

    Mithriel Senior Member

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    PoetInSF said
    I was a biologist before I became too ill to do anything and the complexity of the human body amazes me so when I became diabetic I read all about it. The extraordinary thing is how little they know about it. It has an easy to measure symptom, high blood sugar and certain outcomes everyone agrees about, but no one knows the cause or the mechanism.

    They know the pancreas is where insulin is made but have never isolated a cell which secretes insulin. Large scale studies involving thousands of people in Scandinavia and France have provided strong evidence that it is a genetic disorder present from birth, or at least a genetic trait present from birth that is no longer a survival asset. What we think of as "diabetes" is a consequence of years of damage.

    Many illnesses become very complicated once you scratch the surface but there is a concept of it ( the only way I can think to describe it) among patients and doctors. ME had one once and CFS could have one now. Patients and Dr Mikovitz share a similar idea for instance.

    Our problem is we have a group of researchers whose concept is totally different from patient experience whose vision of the disease, or diseases, is accepted by the medical profession. The only thing different with our disease from other diseases is that doctors do not listen to the experience of the patients. The researchers with the money, the doctors who try to treat it and the patients, have a fractured relationship. That is what makes ME different from other illnesses.

    Mithriel
     
  20. kurt

    kurt Senior Member

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    That is an interesting observation. It is clear that doctors and researchers are often unable to make a differential diagnosis between ME/CFS and somatoform disorders. They really do not listen to us, do not believe us very often, unless they have somehow been touched by this illness.

    But differential diagnosis should not be difficult. I have personal experience with this, once knew a person who occasionally faked a CFS type condition to get attention. The girl had a long histery of mental disturbance but I did not know that at the time. So when she needed help, needed a place to rest, my family helped her. Then one day she was 'faking' her CFS situation, had lain in a bed all day in my house until her parents returned. And her parents were not amused and basically told her to knock it off, get up and get going, and she suddenly sprang to life, looking a bit embarassed to be 'caught in the act.' We later learned that she had this type of pattern. Here is my point, this person would put on an act whenever she needed attention and could not get it, maybe a day or two at a stretch. She would call friends and say she was having various medical emergencies, just to get attention. She told us she needed to be reminded to take medications, but her parents said she was on no medications. She had enough energy to work a regular job, walking several miles during the day. This was a clear illustration to me that somatoform illness exists and doctors should be able to make a differential diagnosis. For instance, a somatoform patient would not likely perpetuate a CFS type condition year after year, letting their entire life disappear and losing all friends and creating a load of financial stress and negative attention. This is really a simple differential diagnosis because the incentives for a real somatoform patient conflict with the reality of life with CFS. I have known hundreds of ME/CFS patients over the years and have never met a single one that fit any somatoform pattern like what I just described. I guess what we may need is doctor and researcher education about how to differentiate between somatoform illness and CFS.

    Sorry if I have gotten too off topic from the Gupta Amygdala study. I agree that Mayo has some serious problems with CFS, they seem not to know the CFS literature, or not believe it. So that may create a problem with their study of Gupta, leading to over generalization about the outcomes of the study. But the Gupta type approach still has merits for CFS, for certain subtypes in particular. It just needs to be appropriately categorized as a rehabilitative treatment that may be helpful in some cases.
     

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