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Psycho/neuro/limbic surgery, Questions, Notes

Discussion in 'General ME/CFS Discussion' started by Ren, Nov 5, 2014.

  1. Ren

    Ren .

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    I'm sharing some surface-level observations/questions/loosely-strung notes as a kind of query to see what thoughts others might have and share. (I understand this is a lot of text, so my main question is in orange below. The rest is info which led me to this question, for those who might be interested...)

    Subject: psychosurgery/neurosurgery [Edit: See also terms: "limbic system surgery" and "neurosurgery for mental disorders" (NMD) ]

    Question: Will psychosurgery/neurosurgery be studied and/or promoted as an innovative treatment/symptom management tool for individuals with ME/CFS? (GWI? Lyme? (Fibro?*))

    (If so, will individuals with ME/CFS have the right to refuse neurosurgery? Or will psychiatrists have the authority to (involuntarily) commit/hospitalize "treatment-resistant" patients and perform surgery without patient consent? How can patients protect their autonomy?)



    Context: Occupycfs, P2P, innovative research, U of Michigan, psychosomatic, chronic pain

    Jennie Spotila recently discussed the P2P guests chosen to present on the following workshop question: “Given the unique challenges of ME/CFS, how can we foster innovative research to enhance the development of treatments for patients?” (1).

    Spotila noted that this segment of the workshop "focuses on studying diseases other than ME/CFS as a way to [look] back into ME/CFS results." In other words, "psychosocial theories and functional somatic syndromes" (1). (Please see Spotila's blog for details, full context, and sources.)

    The speakers for the "innovative research" segment are co-authors Dedra Buchwald, Dan Clauw (U of Michigan (2), and Niloofar Afari. Please also note that the workshop chair is Carmen Green (also of the U of Michigan) (1).

    Additionally (as reported by Jeannette Burmeister), the NIH P2P program senior advisor is Paris Watson (3), and Watson is also a U of Michigan alumni who worked earlier as a "project manager for a community-based participatory research project at the University of Michigan..." (4).

    As reported by Spotila: Clauw, Afari, and Green (with Beth Unger) have presented on overlapping chronic pain conditions. And also of note, in advocating CBT/GET for CFS, Buchwald has written that “Treatment-resistant patients should be referred to a mental health professional.” (Again please see Spotila's blog for details, full context, and sources.)



    Language (and policy): lumpers, psycho/neurosurgery, (bio)psychosocial, NIMH (Insel)

    "Lumpers" = non-specific persons who subscribe to the biopsychosocial model of ME/CFS and related (?) illnesses.

    Psychosurgery = a kind of neurosurgery. However, it's my impression that due (in part at least) to abuses, the term "psychosurgery" (while still used for historical contexts) has fallen out of use for contemporary contexts. (New term?: Neurosurgery for Mental Disorder (NMD) Edit: "neurosurgical interventions for psychiatric disorders have all been directed at various targets within this system [the limbic] and therefore some have proposed the term ' limbic system surgery ' as an alternative to psychosurgery" (4a)).

    (Bio)psychosocial: Do disciples of the biopsychosocial model use the prefix "bio" to give undue weight or legitimacy to psychological theories?

    The US National Institute of Mental Health made news this past year when director Thomas Insel announced a new biological emphasis to NIMH research funding:

    "Trial proposals will need to identify a target or mediator; a positive result will require not only that an intervention ameliorated a symptom, but that it had a demonstrable effect on a target, such as a neural pathway implicated in the disorder or a key cognitive operation... Neuromodulatory treatments, such as brain stimulation, have seen the most innovation but will need considerably more rigor in terms of establishing mechanisms of action and required dose...

    In the current climate, with funding tight and clinical needs urgent, we will be shifting to trials that focus on targets as a way of defining the next generation of treatments. The goal is better outcomes, measured as improved real-world functioning as well as reduced symptoms." (5)



    Psycho/neurosurgery:

    Historically, psychosurgery was promoted in part as an economic solution to healthcare burdens. Twice (but often more) as many women as men were lobotomized (6). Lobotomy became more common with returning WWII soldiers, and "[a]bout 12 percent of all lobotomies were performed in Veterans Hospitals..." ((7) Elliot Valenstein - U of Michigan).

    The 1949 Nobel Prize in Medicine was for lobotomy. "Scandinavian hospitals lobotomized 2.5 times as many people per capita as hospitals in the US...mainly women" (8). Swedish records suggest overcrowding contributed to frequent use of the procedure (9).

    In 1972/3, Michigan (lost but) sought to study behavior modification (particularly aggressive behavior) and psychosurgery using individuals held in state ward. (10) The project's chief neurologist (Ernst Rodin - also some time at U of Michigan) allegedly advocated psychosurgery as a means to prevent riots like those in Detroit (11).


    Fast forward - 2000s, and psycho/neurosurgery research is here again ("a renaissance of neurosurgical intervention" (12a)). Cingulotomy for chronic pain, depression, anxiety disorders, OCD, tourette syndrome, addiction/substance abuse, anorexia, and aggressive behavior disorder (this last - reported to have been performed (in Mexico?) without patient consent and for economic reasons (12b)).

    *A "noninvasive cingulotomy, a surgical procedure occasionally performed to sever white-matter connections to the cingulate and provide pain relief to patients with intractable, chronic pain" has been tested as a treatment/symptom-relief method for individuals with fibromyalgia (13). (Edit: please see source, as I'm unsure of the language here - if white matter is severed in the noninvasive method.)

    Aetna insurance lists "somatoform disorders" with conditions for which cingulotomy is considered experimental/investigational. Aetna refers to the "Consensus on guidelines for stereotactic neurosurgery for psychiatric disorders": "Nuttin and associates (2014) noted that for patients with psychiatric illnesses remaining refractory to 'standard' therapies, neurosurgical procedures may be considered" (14).

    Nuttin et al. (2014): "a substantial minority of patients either does not respond, fails to sustain response, or experiences unacceptable adverse effects. It is for these patients who are even more at risk with nontreatment that the use of neurosurgical procedures...may be considered" (15).

    Shah et al. (2008) on functional neurosurgery: "patients must meet operationalized criteria for severity, chronicity, and disability and have a demonstrated inability to respond to standard available treatments, including psychopharmacology and psychotherapy" (16).


    According to PR, the 2011 CFS grant review roster included a cingulotomy researcher (J. Greenspan) (17).

    Valenstein (1988), again: "When I began to summarize the factors responsible for the proliferation of lobotomy it became evident that all of them still influence the practice of medicine... desperate patients.. unreliable claims of cures.. flawed data... desire for "name and fame."...media... Economic pressures... Competition between medical specialties.. and physicians and hospital administrators continue to search for new applications for new procedures once the staff and facilities are in place. It is even possible to argue that some of the factors that shaped the early history of lobotomy are more influential today" (7).

    Regarding Valenstein, however: Psychiatrist Thomas Szasz (cofounder of CCHR (18)) has sharply criticized Valenstein accusing him of having been an apologist for psychosurgery and supporting psychiatric treatments (despite harms) in order to save taxpayers' money (19).


    And finally, this (20) is an opinion piece about neurosurgery for mental disorder (NMD) in Scotland, including forced treatment. The author also links to legal info (21) particular to Scotland describing how individuals can document how they want to be treated in the future should they be judged mentally incompetent. Does anyone know if such procedures/measures are in place in other countries? (Of course patient rights may be ignored, such as has been witnessed with Karina Hansen.)


    (1) www.occupycfs.com/2014/10/31/p2p-agenda-what-the-huh/
    (2) http://www.med.umich.edu/painresearch/about/index.htm
    (3) http://thoughtsaboutme.com/2014/11/...atients-nor-science-meant-to-be-part-of-p2p/; http://www.iom.edu/~/media/Files/Activity Files/Disease/MECFS/Maier IOM MECFS Presentation.pdf
    (4) https://prevention.nih.gov/about/odp-staff/paris-watson
    (4a) http://neurosurgery.mgh.harvard.edu/functional/psysurg.htm
    (5) http://www.nimh.nih.gov/about/director/2014/a-new-approach-to-clinical-trials.shtml
    http://www.nature.com/news/nih-rethinks-psychiatry-trials-1.14877?WT.mc_id=TWT_NatureNews
    (6) http://www.amazon.com/Last-Resort-Psychosurgery-Medicine-Cambridge/dp/0521524598
    (7) http://quod.lib.umich.edu/m/mqrarchive/act2080.0027.003/66:12?page=root;size=100;view=text
    (8) http://en.wikipedia.org/wiki/Lobotomy#Prevalence
    (9) http://www.ncbi.nlm.nih.gov/pubmed/17990197
    (10) http://videocast.nih.gov/pdf/ohrp_psychosurgery.pdf
    (11) http://breggin.com/index.php?option=com_content&task=view&id=185, http://www.amazon.com/War-Mayhem-Reflections-Viennese-Physician/dp/1552122905, http://www.thinktruth.com/contact.html
    (12a) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2688626/
    (12b) http://www.academia.edu/4754621/Surgery_for_aggressive_behavior_disorder
    (13) http://www.rheumatologynews.com/index.php?id=8929&type=98&tx_ttnews[tt_news]=134157&cHash=da03e20e36
    (14) http://www.aetna.com/cpb/medical/data/200_299/0288.html
    (15) http://jnnp.bmj.com/content/85/9/1003.full.pdf html
    (16) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2687086/
    (17) http://phoenixrising.me/archives/11982
    (18) http://en.wikipedia.org/wiki/Thomas_Szasz
    (19) http://www.amazon.com/Coercion-Cure-Critical-History-Psychiatry/dp/1412810507
    (20) http://www.madinamerica.com/2013/03...ing-under-the-knife-when-treatment-resistant/
    (21) http://www.scotland.gov.uk/Publications/2004/10/20017/44081
     
    Last edited: Nov 7, 2014
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  2. alex3619

    alex3619 Senior Member

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    This is a very dangerous area of medicine. I am not comfortable with anyone having these procedures, for any reason. There are such extreme abuses in the medical records that few now can understand the horror. Further, such treatments rely substantially on psychiatrists, neurologists and surgeons making what amounts to guesses and selling them to desperate patients. Its even worse if they are allowed to force them on patients.

    Keeping someone quiet is not the same as fixing them. Damaging the brain to help someone is a high risk procedure at best, and mutilation at worst. Removing a brain tumour, for example, is not remotely the same issue.
     
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  3. chipmunk1

    chipmunk1 Senior Member

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    20:

    Conclusion: Removing the "diseased brain" of a victim is no longer torture. It is a medical intervention!

    http://bjp.rcpsych.org/content/182/5/404.full
     
    Last edited: Nov 5, 2014
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  4. Ren

    Ren .

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    I'd also saved a snippet from Gulf War Treatment for Chronic Multisymptom Illness (CMI) (2013) and just looked at it in a bit more detail (p. 203-5). I mention it here since CMI is often described as an illness related to ME/CFS, or ME/CFS is described as a CMI. Also of note, Clauw is referenced toward the end of the section.

    The snippet though is "In those who have pain, these correlations are explained in part by the effects of stressors on limbic areas of the brain (in particular, the cingulate cortex) that are associated with pain regulation...."

    Otherwise, I'm a bit unsure of the authors' stance. They say something like past abuse makes people hypersensitive, but this isn't a psychological disorder. But then they say people pay too much attention to their symptoms. And I don't understand either if or to what degree the authors believe some portion on the brain to be damaged, as mentioned above in post #3.

    http://www.nap.edu/openbook.php?record_id=13539&page=204


    A 2013 NY Times article/blurb briefly mentions cingulotomy for depression and describes it as a surgical technique that interrupts a bundle of nerve fibers. This seems like a much softer description than others. I don't know if the language has been used this way very purposefully, or if this is perhaps a different procedure.

    I suppose I'm most concerned about a patient's right to choose their treatment. And I'm concerned that this (neurosurgery) is a direction that is being forced, and that evidence/knowledge is being ignored so that biopsychosocial whathaveyou and neurosurgery can be rammed through and funded. Somewhere someone mentioned a NY Times article (I thought) about neurosurgery being widespread in China as they struggle with healthcare. I haven't seen the article though, but it did make me wonder if the US is funding such trials outside the US. Might be good to know.

    http://www.nytimes.com/health/guides/disease/major-depression/other-treatments.html

    http://dailycaller.com/2011/07/26/nih-sends-more-than-90-million-in-taxpayer-funded-grants-to-china/
     
  5. Martial

    Martial Senior Member

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    This is like reading about medieval times torture devices. The creepy horror experiments you watch in some scary movies. They still practice lobotomy in parts of the world today?!
     
  6. Ren

    Ren .

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    I don't know. I don't want to be an alarmist, but I am very wary. I have not read the following, have only skimmed it for general content, but it seems to describe a bit of history, politics, but also the four surgical procedures used for "psychiatric disease": http://neurosurgery.mgh.harvard.edu/functional/psysurg.htm

    Interesting that the biopsychosocial school insists (to my understanding) that ME/CFS is not a disease but an illness. But if they (psych people) want to do brain surgery, then the mental disorder becomes a disease?

    I think it was @alex3619 who said/wrote once that psychiatry is a moving target. Maybe that analogy works here.
     
  7. chipmunk1

    chipmunk1 Senior Member

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    In many parts of the so-called civilized world, sometimes even without consent. It is no longer called lobotomy though.

    http://www.theguardian.com/lifeandstyle/1999/oct/05/healthandwellbeing.health3

    http://www.nytimes.com/2010/12/01/world/americas/01mexico.html?pagewanted=all&_r=0

    http://www.scotsman.com/news/health/executive-to-allow-banned-brain-surgery-1-570692

    http://articles.latimes.com/2003/aug/04/health/he-psychsurgery4

    It's disgusting.
     
    Last edited: Nov 5, 2014
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  8. alex3619

    alex3619 Senior Member

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    If a law like this goes through, without serious complaint, its time for a radical overhaul of health politics and bureaucracy and the health professions themselves. It would be a travesty of medicine. Unfortunately I think things like this may already happen in various guises and under various laws.
     
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  9. chipmunk1

    chipmunk1 Senior Member

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    Another quote from the first article:

    The irony is that drilling holes in the skull to "treat" mental illnesses has been done since prehistoric times. By doing this they make it seem like there has been no medical progress in that field for thousands of years. They are no better than stone age witch-doctors.

    If that isn't an admission of defeat what is?
     
  10. GracieJ

    GracieJ Senior Member

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    Barbaric. I think I wil go vomit now.

    Crowd control. Period.
     
  11. Martial

    Martial Senior Member

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    Whatever happened to the Hippocratic Oath? People can do some pretty disturbing things when it is supposedly justified by medical "science".
     
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  12. chipmunk1

    chipmunk1 Senior Member

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    I think psychiatry is interpreting the Hippocratic Oath differently: First do no harm. If that doesn't work do serious harm.
     
  13. minkeygirl

    minkeygirl But I Look So Good.

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    How about leeches?
     
  14. alex3619

    alex3619 Senior Member

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    @minkeygirl, "Don't Drink The Kool-Aid" is similar to one of my rules of thumb:

    "12. What does one lemming say to the other? "Everyone is moving this direction, it must be a good idea." Beware your fellow lemmings - just because something is popular doesn't make it right or a good idea. Make up your own mind after at least some investigating and if you still agree then follow the others, just be cautious of cliffs and oceans."
    http://forums.phoenixrising.me/index.php?entries/28-rules-of-thumb.941/
     
  15. alex3619

    alex3619 Senior Member

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    If psychiatry had to go by medical science it would be stuffed. Too much of it is not science. Indeed, one estimate is that even in general medicine about half of what is done lacks sound evidence.
     

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