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Why is Mayo Clinic doing Amygdala Study?

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

  1. PoetInSF

    PoetInSF Senior Member

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    Cancer is more fatal, yes. But cancer diagnosis/treatment/prognosis are well established by the mainstream medicine and they are well accepted by patients. That doesn't leave much to imagination unless the patient is, well, neurotic. The situation with CFS is totally different. Nothing is well established or accepted, and therefore it's only natural to imagine on your own about the cause, treatment and prognosis. It's a human instinct. And it's made worse because CFS patients feel they've been neglected and abused by the main stream medicine. The problem is that such imagination can lead you do things that doesn't help, or reject things that may help. Hence I think CBT could be useful for some CFS patients by dispelling imagination and start managing the disease with the best available info.
  2. PoetInSF

    PoetInSF Senior Member

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    The reality is that little is known except for the relationship between activities/rest and symptoms. Meanwhile, people are busy imagining virus, chemical, mold, diet, bacterial imbalance, vitamin, H2S, organ failures, CDC conspiracy...

    I'm not faimilar with UK's treatment. Do they really claim that CFS is not a physical illness? Even much villified Wessely seems to admit it is a physical illness. I don't find CDC's version objectionable and I thought they adopted UK version.
  3. Robin

    Robin Guest

    In this book about CFS/fibro, Michael Sharpe explains the Oxford CBT study.

    For a thorough, well sourced synopsis of what's happening in the UK with CFS in regards to CBT and GET, read this thread.
  4. Mithriel

    Mithriel Senior Member

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    Kurt, your friend did not have a somatoform disorder but a personality problem, a genuine mental illness or even downright malingering.

    Somatoform disorders, as spoken of by Wessely etc, are physical symptoms experienced by the patient which have no organic basis but come from the patient's unconscious mind. He believes that someone may get a virus, or just be overwhelmed by life, and discovers that being ill helps them cope.

    Being ill gives them a reason to opt out of solving their problems, they get attention from family, from doctors, get given money from the State. They don't have the stigma of a mental illness so they like it. However doing all this makes them deconditioned so they can do less and less.

    Because of this, the UK clinics can honestly say to patients that they believe they have physical problems they just don't believe that they have a physical cause. Thus CBT to get the patient to understand that nothing is actually wrong with them, like persuading someone they are having a phantom pregnancy and there is no baby inside them. Once you realise you aren't physically ill, get yourself fit again with some GET, hey presto good health.

    Any one who doesn't get better is refusing to accept the reality as is anyone who is convinced they actually do have damage to their bodies. The psychiatrists have done their best it's our fault we are still ill so why should we be given any sympathy or benefits, we have made our choice.

    Problem is it doesn't fit the natural history of many of us and most of their successes probably come from people who would have got better anyway.

    Now they are trying to get anyone with chronic fatigue to be classified as having a somatoform disorder in the new DSM, so for the first time physical symptoms will taken as evidence of mental disease even with no obvious mental problems.

    Mithriel
  5. shiso

    shiso Senior Member

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    The harm you mention here is the exact harm I see coming (if this post looks too long, please skip to the last 2 paragraphs).

    As others have said on these forums (some from personal experiences), the Mayo Clinic has a clear record of NOT taking CFS seriously as an organic disease. Their website advocates exercise and antidepressants. The description of this study outright calls the Gupta AR "a mind body practice" and claims that it will examine whether practices such as neurolinguistic reprogramming (a fancy word for literally telling yourself over and over you're going to be 100% better), yogic breathing, and mindfulness meditation will improve "fatigue, quality of life, and sleep" (showing their lack of knowledge about the symptoms most specific to CFS, i.e. PEM, and completely ignoring cognitive dysfunction) - using questionnaires - not exercise stress tests, neurocognitive function tests, sleep studies, or brain scans. Doesn't sound like a serious study of the brain to me.

    The question presented here is NOT whether mind and body are connected (I think few would argue that they aren't), whether mind can change the brain (neuroplasticity studies have shown this is possible, like with stroke victims), or whether mind/body practices are helpful for CFS patients or not (25 years of anecdotal evidence that they are for many), nor is it about comparing the efficacy of mind/body practices versus drugs (toxic or non-toxic).

    Mind/body practices can or course be beneficial for our minds and our bodies as with any disease, and I think most (even if not all) would agree that keeping our minds healthy is of utmost importance. For those who have been helped by Gupta's program, I believe you and am truly happy for you. I know I used harsh words in my earlier post in describing his program as a sham (I was just conveying my personal disappointment with it), but am not discouraging others from giving it a try. Gupta knows many of us, in our circumstances, will take a shot at palliative over nothing and that's his prerogative as a businessman. But do we really need the Mayo Clinic to spend time and money to tell us "mind/body practice such as NLP and meditation are palliative"? In my view, no, we really don't.

    Here is where I am going with this: Funding for CFS research is ridiculously sparse (something between $1 and $4 per patient in federal funding, not much more from the private sector - in any event a fraction of a fraction of a fraction of what is spent on almost all other diseases). Doctors and researchers in mainstream medicine who believe this disease is organic are equally sparse. But mainstream institutions like CDC and the Mayo Clinic are the very institutions that other mainstream doctors and government decision makers look to for the supposed truth about a disease they don't understand.

    The foreseeable scenario: The high and mighty Mayo Clinic publishes the results of its questionnaire-based mind/body study about the effect of AR on "fatigue, quality of life, and sleep" on a few patients proclaiming AR had a fair/substantial/ amazing (take your pick) benefit on patients' "quality of life" (which of course can mean anything from having a more positive outlook about their prognosis to a real CFS patient being able to return to full-time work). This feeds into encouraging CDC's recent trend of spending large portions of its paltry CFS budget studying mind/body medicine and into most doctors'/researchers' already held beliefs that this is a mental (not brain) disease that can be cured by the "mind", deterring others from pursuing other avenues of research into the organic (and I include real mind/brain research) basis of the disease that might get us closer to a real cure, and leaving them with less money to do that with.

    OK - time to go take a relaxing bath so I can get all this out of mind before bed! :rolleyes:
  6. anne

    anne Guest

    Very well said, Shiso.
  7. Mithriel

    Mithriel Senior Member

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    Shiso, that is exactly what has happened in the UK.

    When the NICE guidelines - the rules for doctors in the UK were drawn up they used "evidence based medicine". The only trial that have been funded are psychological ones using questionnaires which ask if people feel less fatigue at the end of the treatment usually CBT or GET. No other symptom is examined.

    These few trials are rolled out with authority as the best available treatment. People on this forum can't believe that there is a conspiracy to trivialise and psychologise CFS so the average doctor thinks these trials are as good as have been done for things like Rheumatoid Arthritis and MS, so all we are offered is CBT and GET.

    When we argue we are brushed off as a few militant complainers who don't want people to get better.

    It is headed to the US, Reeves has seen how well the tactics have worked here.

    Mithriel
  8. starryeyes

    starryeyes Senior Member

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    Yep Mithriel. This is my big fear about the future for PWC in the U.S.
  9. julius

    julius Watchoo lookin' at?

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    Good science really has to be quantitative. It doesn't matter how well funded or controlled a study is if the result is the subjects qualitative observations about how they think they feel.

    The entire DSM (the manual of all psychological/psychiatric 'diseases') doesn't have a single test in any of the thousands of 'diseases' it contains. There is no quantifiable measure for any psychological condition (and no, the connection between neurotransmitters and psych. conditions has never been proven) . So basically, any money invested is research into psychological conditions is wasted money.

    A patient saying he thinks he might feel better is not science.
  10. August59

    August59 Daughters High School Graduation

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    When I became ill approximately 3 years ago, my cardiologist was so concerned with my rapid degeneration across multiple disciplines that his office called the Mayo Clinic and had me an appt. within 3 weeks. I spent 10 days there the first trip and 5 days the second trip and had every conventional test and some unconventional test run during that time. I saw a general internal medicine, cardiologist, neurologist, orthopedic and a vascular doctor and not a single one mentioned the term "CFS". My official documents listed my diagnosis as: myalgias, fatigue, hypogonadism, hyperlipidemia and a few more typical terms that I already knew of. I had insurance at the time, but the total bill was roughly $32,000 and they did not offer or suggest one bit of treatment. It was pretty much "We don't know what's wrong, but something is". Needless to say I was very disappointed and it certainly didn't shore up any support from certain friends and family.
    The ironic thing was that within a week of returning from my last trip to Mayo (and I mean last) was a newspaper article in my local newspaper about a man that had CFS. He had went to Duke Medical Center for 2 weeks and they pretty much told him the same thing that the Mayo Clinic told me except they have a "Chronic Disease" dept. and the doctor there was very familiar with the Hunter Hopkins Center in Charlotte, NC. It took me about 6 weeks to get an appt., but I had a diagnosis within 2-3 hours.
    The Mayo Clinic just doesn't want to venture down the road toward CFS. My guess as to why they are doing this study is that particular dept. had grant money, or some type of funding, and needed to do something and grabbed this and went with it.
  11. kurt

    kurt Senior Member

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    Good catch Mithriel, I must have had brain fog when I wrote that, obviously our friend had a mental disorder and was an attention-seeking malingerer. She did complain of physical problems that might be considered somatoform, but what I described was really more malingering and pathological attention-seeking.

    One simple exercise/oxygen stress test can disprove the idea that chronic fatigue and PEM are somatoform. The unwillingness of government care systems to explore known ME/CFS biomarkers is criminal.

    By now they should well know that GET and CBT do not work in very many ME/CFS cases and often are harmful. It is as if all standard medical reasoning is thrown out the window with this illness. The medical profession as a whole seems to be in decline, not able to hold to first principles well anymore (Hippocratic oath, scientific processes, learning from experience, basic differential diagnosis, etc.)
  12. Linkerzijde

    Linkerzijde

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    Hi,
    I have had a diagnosis since 2007 of Chronic Fatigue Syndrome from a neurologist specializing in MS with a background in neurovirology. He believes my symptoms are due to persistently reactivating herpes viruses and I have been taking Valtrex 500MG once a day to attempt to hold these abeyance.
    I am at the Mayo Clinic right now. I have come here not so much for the chronic fatigue syndrome, but to investigate reoccuring kidney stones and a few other neurological issues that do not seem to fit the typical course of CFS/ME (neuralgia of the trigeminal nerve).
    Nobody here has told me that my CFS problems are strictly speaking "all in my head." What they have told me is that I am suffering from a "central sensitization syndrome" in which the thalmus (nobody has said anything about the amygdala) has become sensitized to peripheral sensations and is actually sending descending signals that have "opened up peripheral pain pathways." This may or may not be correct, but nobody here is telling me this is "all in my head." They are recommending attending their 3 week pain rehabilitation program. I do not know what is involved in that. Is this the British model of CBT and GET? Learn to think positively and it will get better?
    What I can tell you is that nobody I have talked to here has much love for the viral theory of CFS/ME. I am a little amazed at how the central sensitization syndrome/pain rehab approach has become a kind of orthodoxy here across departments. How does that happen? There isn't one practicioner here that disagrees with this approach? I can tell you that the general internist here has told me he is not fond of psychiatric explanations for these kinds of chronic conditions. He doesn't support the "sickness behaviour" or "sick role" approach. He thinks what I am experiencing is very real and probably worse in the totality than many other kinds of illnesses due to the fact that there is a general lack of social legitimacy and support. I did not get the sense I was being dismissed. I did not get the sense that there was a lack of compassion here at all. However, if you are wedded to the viral theory of CFS/ME, I wouldn't recommend coming here. There seems to be little to no support for those ideas. Try Stanford.
    Something I noticed in reading this thread:
    1.) There seems to be a desire to differentiate CFS/ME sufferers from those with "somatoform disorder" so as not to get lumped in with those "head cases." But I think we need to recognize that the entire idea of somotaform disorder is in itself very controversial. Nobody has been able to specify a mechanism for this. The entire concept lacks scientific rigour in that in any given case it is only falsifiable in the negative. What I am trying to say is that it is doubtful if anyone can truly be said to have a somatoform disorder at all. I am not sure what we gain by assuming that there is a cohort of psychiatric cases polluting the population of those diagnosed with CFS/ME. The entire idea of somatoform disorder is very problematic.
  13. barbc56

    barbc56 Senior Member

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    Absolutely!!! It's just too Freudian. I don't believe that we can subconsciously make ourselves ill. While anxiety, etc. may play a role in illness, it doesn't directly cause disease.

    If I could just think positively and be cured, I would have been cured a long time ago. :aghhh:

    Barb C.:>)
  14. Linkerzijde

    Linkerzijde

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    Hi barb,

    Thanks for the reply. But what I get from reading this thread is that there seems to be a persistent us/them dichotomy. "We" (real CFS/ME sufferers) who are generally sick with a biological disease complete with bio-markers and "those others" genuine psych cases with somatoform disorders, who pollute our cohort and give false positives for CBT and GET. These people can think themselves out of their sickness beliefs. My point is that the entire idea of a somatoform disorder (really psychiatry itself) rests on shoddy scientific ground. We should be careful about saying anyone has a somatoform disorder. I agree with the poster above who says medical science seems to be in decline. That was very well put and is evidenced by the persistent reliance on psychiatry to explain all disability related to chronic illness, chronic pain, etc. These ideas are regularly trumpeted out for people suffering chronic pain of all types. If you think the Mayo clinic is bad on CFS/ME check out its pamphlet on Teens in Chronic Pain. Downright frightening in their recommendation to parents to basically ignore their children's pain and yet they insist the pain itself is real!
    user9876 likes this.
  15. Holmsey

    Holmsey Senior Member

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    I probably shouldn't comment as I haven't had time to read the whole thread but like many others here I've tried Gupta's programme, I did so because what he was proposing was plausible. That is that there was a feedback loop between aspects of mind and how the body responded to them. When you watch a movie and something unexpected happens you get a fright, both a mental and a very physial experience, you were never in any danger, nothing touched your body and yet you've released adrenaline your heart rate goes up, you are on the way to shock. It didn't seem absurd to me that the body could get locked into an 'oversensitized' state and what Gupta proposes is that you 'cure' this by spotting up regulation and 'coaching' the mind in order to achieve a down regulation.

    Calm the mind calm the body.

    Sales pitch over, it didn't work for me and I'm a tryer, I'd love to know how many success stories there are and what their state was in underaking the programme.

    Just as much I'd like to know how many failures he has and I include myself as one of them. I still get regular emails announcing new people I can give money too, or tweaks he's made and prepared to hold workshops on. The whole set up seems geared pyrymid style toward Mr. Gupta having a great life, but even when I was involved (3 years back) it was obvious he had ambitions to be 'mainstream' and 'recognised'. If I recall his offices were on Harley Street in Londay and you have to be both ambitious, pretentious and well funded to have an office there.

    On that note, if the Psyc's can use him I'm sure he'll play their tune, whereas when he sold to me it was his mantra that 'This is a physical illness, I can't stress it enough, this is a...'.

    Worrying stuff, but only if someone concludes this is the general replacement for CBT.
    ukxmrv likes this.
  16. aiden424

    aiden424

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    I think the Mayo Clinic is a joke! I went there 6 months after I got sick, was there for about a week and a half. Had a head to toe exam including phychiatry. Had a huge bulls-eye rash on the top of my right foot. All they could come up with was that maybe I had a unknown virus. Idiots!!!!!
  17. K2 for Hope

    K2 for Hope ALways Hoping

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    I couldn't get into Mayo for osteo-arthritis because I have ME/CFS and mentioned it on the "application" to get an appt for the arthritis.

    They phoned me to let me know there is no cure for ME/CFS and therefore, they wouldn't see me for the osteo-arthritis either.

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