The Ben's Friends survey mentioned above has been posted at http://www.livingwithtn.org/forum/topics/in-their-own-words-patient...
I have posted a separate discussion of the survey here on Life With Lupus. The short-form summary of results is also in review for publication in a regular blog on Psychology Today.
Your voices WILL be heard.
Regards and Best,
Red
Hello Red,
I was looking at the link and the site and spotted a discussion on there by "Cookster" regarding Keppra.
I'm on Keppra which is for epilepsy on an high dosage tablet medication...she does'nt want an infusion because with Keppra you have to start off with low dosage into the body to see how your body reacts plus if she does'nt suffer with epilepsy she should'nt have it, as epileptic meds can cause seizures for those not suffering from them and i also see she can't have other epileptic meds she's mentioned which i've taken...so i do advise against it for her health.
I don't know if you'd like to add this for her on the site besides this link on the drug.
http://www.netdoctor.co.uk/brain-and-nervous-system/medicines/keppra.html
Regards Terri :)
Terri -- I'll follow up tomorrow. Thanks for the tip.
Other than that: would it be possible to feature this discussion or announce the publication of the survey separately?
Regards, Red
Hello Red,
Regarding the discussion and where it could be featured, you need to ask JC or Scott, sorry i can't help furthur.
Terri :)
Lawhern said:
Terri -- I'll follow up tomorrow. Thanks for the tip.
Other than that: would it be possible to feature this discussion or announce the publication of the survey separately?
Regards, Red
Here's a bit more current news on the APA and so-called Somatic Symptom Disorder. Ben's Friends are of course by no means the only organization that is negatively responding to this foolishness. For those who can spare the time to read, here is another article by Dr Allen Frances in the highly prestigious British Medical Journal (BMJ).
http://www.bmj.com/content/346/bmj.f1580
The APA chairman of the DSM-5 somatic disorders working group, Dr. Joel Dimsdale, has responded to Dr. Frances in the rapid response comments column, defending the working group revisions of somatic disorders. See http://www.bmj.com/content/346/bmj.f1580?tab=responses
I have in my turn responded on behalf of patients, following Dr. Dimsdale. My input was accepted by BMJ. As of this morning, three other comments are being reviewed by BMJ editors, also pending publication there. This is what I had to offer:
==========================
As a 17-year volunteer (medical layman) advocate, writer, and online research analyst for chronic face pain patients, I have interacted with over 4,000 people in pain. From this background, I hope I will be pardoned for speaking truth to power. I find the rationale and concerns offered by Dr Allen Francis to be compelling. I cannot similarly credit the apologia offered by Joel Dimsdale.
Patients widely understand as Dr Dimsdale apparently does not, that many who are referred by medical doctors to a mental health professional are being told either explicitly or by implication that their pain problem is "all in their head". And they roundly reject that inappropriate conclusion.
Some chronic pain patients might be helped by referral to mental health professionals for ancillary support in a program of ongoing medical care. But hundreds of patients tell me that this is not what actually happens. Dealing with complex and time consuming medical issues, patients are referred by over-worked or ill-trained primary care doctors to get them out of the doctor's practice. By any other name, the objective is triage, not patient welfare.
Somebody tell me how a patient's concerns for their own symptoms can ever be judged "disproportionate" when they experience a red hot ice pick being driven through their cheek or into their ear -- repeatedly for hours on end! But this is precisely the judgment applied in terms such as "catastrophic ideation" or "somatic disorder".
If it were up to chronic pain patients, any professional who uses terminology like "psychogenic pain" or "conversion disorder" would have his or her mouth washed out with soap! Patients get it and it's time for doctors to rethink: chronic pain is often co-morbid with depression and anxiety. But correlation is not cause. Depression does NOT cause pain.
Sincerely,
Richard A. Lawhern, Ph.D.
=========================
If anyone in our communities wishes to add their own voice in this discussion, then I encourage you to read Dr Frances' article thoroughly and to keep in mind that BMJ is a professional medical journal, not a social networking venue like ours. The journal seriously discourages venting, piling-on, or emotional personal stories. So my advice would be to keep your input short, focused, and attentive to the fact that your input will be read by medical professionals. What they need to hear from us is that the assumptions and speculations of the APA working group are unsupported by any reasonable level of science, and will be seriously harmful to patient welfare by facilitating premature dismissal of patients who may have potentially deadly medical problems.
Journal guidelines for responses are provided at
http://www.bmj.com/about-bmj/resources-readers/responding-articles
You don't need to subscribe to BMJ to comment.
Regards and best,
Red
Here is an update on public opposition to the application of Somatic Symptom Disorder as a diagnosis.
========================
Dear Friends and Colleagues
This note is to announce publication of a blog article on Psychology Today, authored by Dr. Allen Frances, MD -- a prominent psychiatrist and critic of the American Psychiatric Association's 5th edition of the "Diagnostic and Statistical Manual of Mental Disorders". Titled "The Medically Ill Speak For Themselves -- And don't want to be labeled as mentally ill", the article provides chronic pain patients and others with rare medical disorders a voice in opposition to the over-broad and scientifically unsupported new category of mental disorders called "Somatic Symptom Disorder" in the DSM-5. Dr Frances employs statistics from a survey which I designed which was announced by the Ben's Friends communities for patients with rare disorders (http://www.bensfriends.org). The findings are attributed and linked to the detailed analysis report at Living With TN.
The Psychology Today article may be found at:
http://www.psychologytoday.com/blog/saving-normal/201304/the-medica...
The summary and detailed survey outcomes analysis may be found at:
http://www.livingwithtn.org/forum/topics/in-their-own-words-patient...
Hopefully this is progress. In my personal view, it is long overdue for psychiatric professionals who define "disorders" to listen not only to their own speculations and surmises, but also to patients who have already been harmed by inappropriate application of naive psychosomatic labels. It is entirely too short a step from "I can find no definite medical cause for your pain" (a statement about the physician's findings or lack thereof) to "the pain is all in your head" (a statement blaming the patient for their own pain). Psychiatric professionals should have a care not to become enablers for frustrated, over-worked, or ill-trained medical doctors who apply such labels without sensitivity to their effects on the patient
==============
Thanks to all of you who offered your voices in the survey.
Sincere best regards,
Red
Again, an update on efforts to confront the APA on the damage that the DSM-5 may do to millions of patients. It turns out that even the psychiatric community is beginning to see light -- too little and too late, perhaps, but the tide of opinion is running against the APA.
I have announced the following to a circle of informed patients and friends who are invested in support to chronic face pain patients.
======================
Welcome news here: the US National Institutes of Mental Health aren't buying into the nonsense in DSM-5 either!
Discovery credit to N.S.E., a scientist / scholar in psychology. (THANKS!)
http://www.nimh.nih.gov/about/director/2013/transforming-diagnosis....
Transforming Diagnosis
By Thomas Insel on April 29, 2013
In a few weeks, the American Psychiatric Association will release its new edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This volume will tweak several current diagnostic categories, from autism spectrum disorders to mood disorders. While many of these changes have been contentious, the final product involves mostly modest alterations of the previous edition, based on new insights emerging from research since 1990 when DSM-IV was published. Sometimes this research recommended new categories (e.g., mood dysregulation disorder) or that previous categories could be dropped (e.g., Asperger’s syndrome).1
The goal of this new manual, as with all previous editions, is to provide a common language for describing psychopathology. While DSM has been described as a “Bible” for the field, it is, at best, a dictionary, creating a set of labels and defining each. The strength of each of the editions of DSM has been “reliability” – each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity. Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure. In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever. Indeed, symptom-based diagnosis, once common in other areas of medicine, has been largely replaced in the past half century as we have understood that symptoms alone rarely indicate the best choice of treatment.
Patients with mental disorders deserve better. NIMH has launched the Research Domain Criteria (RDoC) project to transform diagnosis by incorporating genetics, imaging, cognitive science, and other levels of information to lay the foundation for a new classification system. Through a series of workshops over the past 18 months, we have tried to define several major categories for a new nosology (see below). This approach began with several assumptions:
A diagnostic approach based on the biology as well as the symptoms must not be constrained by the current DSM categories, Mental disorders are biological disorders involving brain circuits that implicate specific domains of cognition, emotion, or behavior, Each level of analysis needs to be understood across a dimension of function,
Mapping the cognitive, circuit, and genetic aspects of mental disorders will yield new and better targets for treatment.
It became immediately clear that we cannot design a system based on biomarkers or cognitive performance because we lack the data. In this sense, RDoC is a framework for collecting the data needed for a new nosology. But it is critical to realize that we cannot succeed if we use DSM categories as the “gold standard.”2 The diagnostic system has to be based on the emerging research data, not on the current symptom-based categories. Imagine deciding that EKGs were not useful because many patients with chest pain did not have EKG changes. That is what we have been doing for decades when we reject a biomarker because it does not detect a DSM category. We need to begin collecting the genetic, imaging, physiologic, and cognitive data to see how all the data – not just the symptoms – cluster and how these clusters relate to treatment response.
That is why NIMH will be re-orienting its research away from DSM categories. Going forward, we will be supporting research projects that look across current categories – or sub-divide current categories – to begin to develop a better system. What does this mean for applicants? Clinical trials might study all patients in a mood clinic rather than those meeting strict major depressive disorder criteria. Studies of biomarkers for “depression” might begin by looking across many disorders with anhedonia or emotional appraisal bias or psychomotor retardation to understand the circuitry underlying these symptoms. What does this mean for patients? We are committed to new and better treatments, but we feel this will only happen by developing a more precise diagnostic system. The best reason to develop RDoC is to seek better outcomes.
RDoC, for now, is a research framework, not a clinical tool. This is a decade-long project that is just beginning. Many NIMH researchers, already stressed by budget cuts and tough competition for research funding, will not welcome this change. Some will see RDoC as an academic exercise divorced from clinical practice. But patients and families should welcome this change as a first step towards "precision medicine,” the movement that has transformed cancer diagnosis and treatment. RDoC is nothing less than a plan to transform clinical practice by bringing a new generation of research to inform how we diagnose and treat mental disorders. As two eminent psychiatric geneticists recently concluded, “At the end of the 19th century, it was logical to use a simple diagnostic approach that offered reasonable prognostic validity. At the beginning of the 21st century, we must set our sights higher.”3
The major RDoC research domains:
Negative Valence Systems
Positive Valence Systems
Cognitive Systems
Systems for Social Processes
Arousal/Modulatory Systems
References
1 Mental health: On the spectrum. Adam D. Nature. 2013 Apr 25;496(7446):416-8. doi: 10.1038/496416a. No abstract available. PMID: 23619674
2 Why has it taken so long for biological psychiatry to develop clinical tests and what to do about it? Kapur S, Phillips AG, Insel TR. Mol Psychiatry. 2012 Dec;17(12):1174-9. doi: 10.1038/mp.2012.105. Epub 2012 Aug 7.PMID:22869033
3 The Kraepelinian dichotomy - going, going... but still not gone. Craddock N, Owen MJ. Br J Psychiatry. 2010 Feb;196(2):92-5. doi: 10.1192/bjp.bp.109.073429. PMID: 20118450
Yes, I believe that Somatic Symptom Disorder will be re-edited out of the DSM after one shameful appearance in this year's version. Sometimes things have to go to a ridiculous extreme before they swing back the other way towards common sense.
Odd, but the following did not appear in the update an hour ago:
I have announced the following to a circle of informed patients and friends who are invested in support to chronic face pain patients.
======================
Welcome news here: the US National Institutes of Mental Health aren't buying into the nonsense in DSM-5 either!
Discovery credit to N.S.E., a scientist / scholar in psychology. (THANKS!)
http://www.nimh.nih.gov/about/director/2013/transforming-diagnosis....
Transforming Diagnosis
By Thomas Insel on April 29, 2013
In a few weeks, the American Psychiatric Association will release its new edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This volume will tweak several current diagnostic categories, from autism spectrum disorders to mood disorders. While many of these changes have been contentious, the final product involves mostly modest alterations of the previous edition, based on new insights emerging from research since 1990 when DSM-IV was published. Sometimes this research recommended new categories (e.g., mood dysregulation disorder) or that previous categories could be dropped (e.g., Asperger’s syndrome).1
The goal of this new manual, as with all previous editions, is to provide a common language for describing psychopathology. While DSM has been described as a “Bible” for the field, it is, at best, a dictionary, creating a set of labels and defining each. The strength of each of the editions of DSM has been “reliability” – each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity. Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure. In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever. Indeed, symptom-based diagnosis, once common in other areas of medicine, has been largely replaced in the past half century as we have understood that symptoms alone rarely indicate the best choice of treatment.
Patients with mental disorders deserve better. NIMH has launched the Research Domain Criteria (RDoC) project to transform diagnosis by incorporating genetics, imaging, cognitive science, and other levels of information to lay the foundation for a new classification system. Through a series of workshops over the past 18 months, we have tried to define several major categories for a new nosology (see below). This approach began with several assumptions:
A diagnostic approach based on the biology as well as the symptoms must not be constrained by the current DSM categories, Mental disorders are biological disorders involving brain circuits that implicate specific domains of cognition, emotion, or behavior, Each level of analysis needs to be understood across a dimension of function,
Mapping the cognitive, circuit, and genetic aspects of mental disorders will yield new and better targets for treatment.
It became immediately clear that we cannot design a system based on biomarkers or cognitive performance because we lack the data. In this sense, RDoC is a framework for collecting the data needed for a new nosology. But it is critical to realize that we cannot succeed if we use DSM categories as the “gold standard.”2 The diagnostic system has to be based on the emerging research data, not on the current symptom-based categories. Imagine deciding that EKGs were not useful because many patients with chest pain did not have EKG changes. That is what we have been doing for decades when we reject a biomarker because it does not detect a DSM category. We need to begin collecting the genetic, imaging, physiologic, and cognitive data to see how all the data – not just the symptoms – cluster and how these clusters relate to treatment response.
That is why NIMH will be re-orienting its research away from DSM categories. Going forward, we will be supporting research projects that look across current categories – or sub-divide current categories – to begin to develop a better system. What does this mean for applicants? Clinical trials might study all patients in a mood clinic rather than those meeting strict major depressive disorder criteria. Studies of biomarkers for “depression” might begin by looking across many disorders with anhedonia or emotional appraisal bias or psychomotor retardation to understand the circuitry underlying these symptoms. What does this mean for patients? We are committed to new and better treatments, but we feel this will only happen by developing a more precise diagnostic system. The best reason to develop RDoC is to seek better outcomes.
RDoC, for now, is a research framework, not a clinical tool. This is a decade-long project that is just beginning. Many NIMH researchers, already stressed by budget cuts and tough competition for research funding, will not welcome this change. Some will see RDoC as an academic exercise divorced from clinical practice. But patients and families should welcome this change as a first step towards "precision medicine,” the movement that has transformed cancer diagnosis and treatment. RDoC is nothing less than a plan to transform clinical practice by bringing a new generation of research to inform how we diagnose and treat mental disorders. As two eminent psychiatric geneticists recently concluded, “At the end of the 19th century, it was logical to use a simple diagnostic approach that offered reasonable prognostic validity. At the beginning of the 21st century, we must set our sights higher.”3
The major RDoC research domains:
Negative Valence Systems
Positive Valence Systems
Cognitive Systems
Systems for Social Processes
Arousal/Modulatory Systems
References
1 Mental health: On the spectrum. Adam D. Nature. 2013 Apr 25;496(7446):416-8. doi: 10.1038/496416a. No abstract available. PMID: 23619674
2 Why has it taken so long for biological psychiatry to develop clinical tests and what to do about it? Kapur S, Phillips AG, Insel TR. Mol Psychiatry. 2012 Dec;17(12):1174-9. doi: 10.1038/mp.2012.105. Epub 2012 Aug 7.PMID:22869033
3 The Kraepelinian dichotomy - going, going... but still not gone. Craddock N, Owen MJ. Br J Psychiatry. 2010 Feb;196(2):92-5. doi: 10.1192/bjp.bp.109.073429. PMID: 20118450
Thanks, this is very interesting! Go, NIMH! It's high time for the mental health field to become more science and biology based and less assumption based.
Late Breaking News [July 2013] -- Following up from the Ben's Friends survey, an important new paper has been written and published under the auspices of "DxSummit.org". The title is "Psychogenic Pain and Iatrogenic Suicide." The intention is to put a load of bird shot across the paths of general practitioner MDs and mental health specialists, to warn them off from ignorantly assigning a diagnosis of so-called "psychogenic pain" to people whose medical conditions they do not understand. The article examines evidence that -- above and beyond their pain itself -- assignment of the diagnostic label may become a factor that raises the risk of suicide in some people.
Feel free to visit and to print out the article from: http://dxsummit.org/archives/1002
If a doctor has ever used the term "psychogenic pain" in your medical records, then they need to read this work.
Regards and best to all,
Red Lawhern, Ph.D.
Resident Research Analysrt, LwTN
By any chance did my next most recent posting text disappear? Odd... R
Here is a repeat of the text...
=========================
Late Breaking News [July 2013] --
Following up from the Ben's Friends survey, an important new paper has been written and published under the auspices of "DxSummit.org". The title is "Psychogenic Pain and Iatrogenic Suicide." The intention is to put a load of bird shot across the paths of general practitioner MDs and mental health specialists, to warn them off from ignorantly assigning a diagnosis of so-called "psychogenic pain" to people whose medical conditions they do not understand. The article examines evidence that -- above and beyond their pain itself -- assignment of the diagnostic label may become a factor that raises the risk of suicide in some people.
Feel free to visit and to print out the article from: http://dxsummit.org/archives/1002
If a doctor has ever used the term "psychogenic pain" in your medical records, then they need to read this work.
Regards and best to all,
Red Lawhern, Ph.D.
Resident Research Analysrt, LwTN
Lawhern, the text is not visible yet.
I have had the same trouble with getting cut and pasted text to appear on this network -- sometimes I think it gets rejected as spam. Try removing extra spacing and quotation marks from the text, to get it to appear. Sorry, I know it is a nuisance.
One more time:
Late Breaking News [July 2013] --
Following up from the Ben's Friends survey, an important new paper has been written and published under the auspices of DxSummit.org. The title is "Psychogenic Pain and Iatrogenic Suicide." The intention is to put a load of bird shot across the paths of general practitioner MDs and mental health specialists, to warn them off from ignorantly assigning a diagnosis of so-called psychogenic pain to people whose medical conditions they do not understand. The article examines evidence that -- above and beyond their pain itself -- assignment of the diagnostic label may become a factor that raises the risk of suicide in some people.
Feel free to visit and to print out the article from: http://dxsummit.org/archives/1002
If a doctor has ever used the term psychogenic pain in your medical records, then they need to read this work.
Regards and best to all,
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
Here's an update on the issue of psychiatric mis-diagnosis and mistreatment of chronic pain patients. It turns out that I've had to go considerably farther afield from my original objectives in getting this issue more visibility. The following announcement has been shared with my circles of friends and professional colleagues. Feel free to do likewise..
Regards and best,
Red
=================
Dear friends and colleagues,
This note is to invite you to read and share with others, an article just accepted at the website DxSummit.org. Titled "Lead, Follow, or Get Out of the Way -- A Layman Perspective On Change" [http://dxsummit.org/archives/1290], this paper lays out in layman's language what is presently wrong with the profession and practice of psychiatry and psychology, to an audience of practitioners in these and related fields. I then propose a program for reforming and redirecting the healing arts, which potentially touches hundreds of thousands who now practice in these fields. I invite the comments of professionals to improve on the first draft and initiate the processes of change.
DxSummit.org explains itself as "The Global Summit on Diagnostic Alternatives: An Online Platform for Rethinking Mental Health". In their own words, "the Diagnostic Summit Committee of the Society for Humanistic Psychology has established the Global Summit on Diagnostic Alternatives (GSDA), an internet-based platform for open discussion about alternatives to the current diagnostic paradigm." Sixty-five core participants are listed among contributors on the site, many of them seasoned in the practice of psychology, psychiatry, counseling and social work. This is the second article which I have had accepted there. The other was titled "Psychogenic Pain and Iatrogenic Suicide", and it is one of the more often read on the site, with over 200 viewings.
This article is of direct relevance to you as an individual if you have ever taken anti-depressant medications with poor results; if you have a child prescribed long-term medications for ADHD; if you have been in counseling or psychotherapy and found yourself being manipulated or coerced; if a friend or relative has been diagnosed with paranoid schizophrenia, bipolar disorder, or OCD; if you've ever been told that your unexplained medical symptoms are psychosomatic in origin; if you have lost someone to suicide who was under treatment at the time.
In short -- to nearly all of us.
If this article is to have any impact on starting a change process, it must be read and discussed. Thus I ask your personal assistance in making that happen among both professionals in the healing arts and their clients. Feel free to forward this note and to share it with your medical doctor. Read it yourself, and offer comment if you feel qualified.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst,
"Living With TN"
This reminded me of what my uncle told me to say the next time anyone says its all in my head. "The next time someone tells you its all in your head, poke them in the eye and tell them that's all in their head" I am just thankful that my local doctor didnt give up on finding what was going on. He pretty much knew from the start was lupus and wasnt to surprised when we got back from mayo and they said it was lupus. And he just shakes his head and rolls his eyes when we tell him the neurologist says its all in the head......