I just shared the petition on my Facebook too.
The following is an extract of a letter sent to the chairman of the Scientific Review Committee for the DSM-5 Task Force at the American Psychiatric Association...
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To: Dr Robert Freedman, MD
Chairman of the Scientific Review Committee
Diagnostic and Statistical Manual Task Force
American Psychiatric Association
Dear Dr Freedman,
I write to implore you to take immediate action to formally advocate for removal of the proposed "Somatic Symptom Disorder" from the final drafts of the DSM, 5th Edition. I understand that final drafts will go to the publisher at the end of this month. It is vital that this so-called "disorder" be withdrawn, on multiple scientific and ethical grounds including the following:
1. There is no body of scientific evidence to support the assignment of a psychiatric diagnosis to the behaviors described in the published draft criteria for SSD. Kappa testing establishes only that multiple psychiatric professionals working from a list of symptoms and behaviors can reliably associate the proposed diagnosis with the listed symptoms. Such testing does nothing to establish the validity of the diagnosis itself. This latter project requires independent research, prevalence and validity testing and factors analysis -- which in the case of SSD seem to be exceptionally weak if not totally lacking.
2. The diagnostic criteria proposed by the SSD Working Group are dangerously over-broad and imprecise. A patient could be assigned a psychiatric diagnosis on the basis of nothing more than the examining psychiatrist or psychologist's personal opinion that the patient's anxiety, depression or medical concerns are in some manner "disproportionate" -- or that they have over-responded to the protracted inability of multiple medical doctor(s) to diagnose and treat their valid physical symptoms.
3. Once assigned a psychiatric diagnosis, the predictable outcome for the patient will be withdrawal of medical care in favor of psychiatric "treatment". This withdrawal will cause enormous harm to hundreds of thousands of patients who deal with complex or poorly understood disorders that are none the less medically valid. Such disorders include Psoriatric Arthritis, Lupus, other auto-immune disorders such as Lyme Disease, Fibromyalgia, neurological disorders including Trigeminal Neuralgia, Cluster Headache and Complex Regional Pain Disorder. Psychiatric diagnosis may also serve to disguise missed medical diagnoses, resulting in increased disability or death of the patient. Moreover, there is no effective course of psychiatric treatment which "cures" the spectrum of medical symptoms which are (falsely, in my view) attributed to SSD.
I understand from BLOGs published on Psychology Today, that all of the concerns above have been pointed out to the members of the SSD Working Group, by their former chairman as well as by other working medical professionals. The Working Group has chosen to ignore these concerns, and appears not even to have been willing to respond to them. Many patients are now aware of this arrogant refusal to address fundamental issues. If I may be forgiven the use of vernacular, what I am now hearing from literally hundreds of patients is that they're about to be screwed over once again by a medical and psychiatric establishment that is more interested in its own financial rewards than in the welfare of its clients. If a medical doctor doesn't understand what is wrong with them, then it's "blame the patient and hand them off to a shrink."
Dr. Freedman, while I do not intend to convey a threat against any individual, if the DSM-5 is published with SSD as a component, I must seriously doubt that either the APA or the psychiatric profession as a whole will find itself immune from negative consequences. The SSD proposal compromises the psychiatric profession as a whole. The APA should expect to face not only serious public criticism but also a boycott of the DSM-5 and its European derivatives by practicing professionals. Once the lawyers inevitably become involved, court cases may establish that the unscientific thinking of the Working Group comprises a defacto institutionalized form of medical and psychiatric malpractice, on a grand scale.
PLEASE DO NOT GO THERE! Help stop this atrocity from happening!
I write to you as an 18-year patient advocate, online author and research analyst for chronic face pain patients. I was webmaster and a member of the Board during the late 1990s for the US Trigeminal Neuralgia Association. My early work with TNA led to their first Asculapius Award for Excellence in web-based healthcare communications. I am now a moderator and content writer for "Living With TN", a social networking online community serving 3500 chronic face pain patients in 90 countries, under the umbrella of the Ben's Friends group for rare disorders. I wrote the Wikipedia entry on Atypical Trigeminal Neuralgia, and I've contributed under retainer to web pages at Allegheny General Hospital in Pittsburgh PA.
I am not a physician and I'm careful to make that known to patients whom I support. Rather, I am a technically-trained layman (Ph.D. Engineering Systems, UCLA 1976). I have 45 years experience in operations research and the evaluation of advanced technology in multiple fields. Thus I am quite familiar with the differences between science and unsupported professional speculation. SSD clearly falls in the latter category. It will cause enormous harm to both patients and the psychiatric community if published by the APA.
Should you wish to further explore these concerns in personal conversation, I am available most days from 0800 to 1700 hours US Eastern Time. I may be reached at [phone numbers deleted]. You may verify my personal and professional profile easily by doing a google search on my full name. You'll get literally thousands of hits ranging back to 1992.
I look forward to hearing your positive response to this plea for rationality.
Sincerely,
Richard A. "Red" Lawhern, Ph.D.
Moderator, Living With TN (http://www.livingwithtn.org)
Personal website "Giving Something Back" (http://www.lawhern.org)
I agree with you red, But I suspect your letter will be met with the same response as someone who advocates just abolishing psychiatry as a branch of medicine altogether......
Red,
I wanted to let you know my GP’s opinion on this. These are ideas of weak doctors. Whom do not care, can’t admit to lack of knowledge or understanding, who do not how to treat patients with complex or hard to diginoise illnesses, and basically do not care for their patients but more of them selfs. In a nut shell, any doctor that would use this are jerks and should not be pratcing medicine.
By the way I love my GP even more now.
If I knew him personally, I expect I would share your opinion of your doctor fully, Kari. Thanks for sharing.
Red
Some doctors are worse than others, that's for sure. I haven't met an ENT yet who isn't only interested in doing something quick, easy and surgical that he/she can bill for, regardless if it helps your condition or not. Too many doctors diagnose according a script and when what you present with doesn't fit it, its all to easy to pan you off on a shrink....
I just hope they listen to this letter.
I'm talking to some other dissident psychological professional people, Min. What they tell me is that the APA has seriously lost its way as a standards-setting body. Many of its senior members are highly insensitive to the harm they are doing to patients, not only with SSD but with several other disorders that exist only in the heads of psychological professionals whose livelihoods depend on being able to "treat" their own delusional fantasy.
So the advice I received was "don't hold your breath". Ultimately, if this atrocity is going to be corrected, it may require a general boycott of the DSM-5, with a serious financial hit to the APA royalties on the book. Barring a last minute miracle, I'll try to find a way to constructively harness public outrage in promoting just such a boycott.
Regards, Red
Red,
I’m sure you would. I think if it was still possible he would still be doing home visits for his patients. The medical world would be a lot better off if there were more docs out there like him; whom went into medicine to help people and not for the bottom dollar.
As for boycott maybe contacting other associations such as the TN, Lupus, and other complex disease associations on national levels and have them band together against? I can not imagine they are too thrilled with this all.
Richard A. "Red" Lawhern said:
If I knew him personally, I expect I would share your opinion of your doctor fully, Kari. Thanks for sharing.
Red
I'm starting the process of contacting patient and shareholder organization Boards, "as we speak", Kari. I'll report progress if any in this thread.
Regards, Red
http://www.washingtonpost.com/wp-dyn/content/article/2007/11/09/AR2...
Read this article, it shows some of the real dangers in "psychologizing" patients who present with symptoms of unknown etiology. It will also make you very angry. One doctor wanted to do psycho-surgery on this guy!
Thank you, Rosa. The article is indeed very apt, for illustrating the tendency of medical doctors to project their own inadequacy onto patients they haven't helped, and to be aided in this process by psychiatrists who still believe in the professional delusional system which mascarades as "conversion disorder" in the DSM.
Regards, Red
You know... this all reminds me of a song. Performed by Slade. The lyrics goes like this.... All the world is a stage, all the people are players- turn on the spotlight.....it's yours... bring up the curtain ......APPLAUSE!!!
Well , something like that. The whole thing just seems like a huge play to me. The word Satire comes to mind too, Red... People playing at being doctors, playing with people's emotions.. so on and so on....... ridiculous.
Venting here!!!!!!!
Venting acknowledged. And Greek Tragedy also comes to mind: many large frogs crowding one another out in a small puddle, while larger concerns go unnoticed and unremarked.
Red
I totally agree.
When hospitalized for pain, the attending physician thought that a "hug" from her would make me feel better.
The same doctor called in a Psych consult, who thankfully, said I was just fine, but in a lot of pain.
Rosa14 said:
They don't need to revise the DSM to write off chronic pain patients as "psych cases," they often do it now anyway and many medical doctors are complicit in the madness. BTW, they are getting more sophisticated with this. One psychiatrist told me that Freud is out and Pavlov is in when it comes to "somatoform disorder." Its not so much that the patient is converting psycho-social stress to physical symptoms through some mysterious process nobody can define, its that the pain centers of your brain become activated due to emotional stress and get "stuck in the on position." If that is where it ended, they may not be doing badly. But old habits die hard, and this is usually followed by talk of "sickness behaviours," "sickness roles," and "enabling family members" as the reason why people with chronic pain can't recover.
Rosa, I have met one older ENT who I like.
I was referred to this large, younger practice after my ATN dx. Every doc I have met there treats me like I am “off”. The first time I went, the ENT didn’t even look in my ear, even though ,most of my pain is in my ear! Thank goodness I have a good neuro who is kind, helpful and caring. The ENTs out of this group were actually cruel!
Here is an update on action to challenge the mislabeling of medical illness as mental disorder.
For the past week, I have been writing letters to key figures in the American Psychiatric Association, concerning the delusional mythology which is so-called "Somatic Symptom Disorder". These have included the Chairman of the DSM-5 Scientific Review Committee, and every member of the APA who is now running for election to their Board of Trustees. Only one of those worthies has responded in any way to my inquiries. ONE. I'm not going to name him here, because he's promised to "look into" the issues, and even that level of indefinite promise might lead to him losing the election. In my opinion, the APA seems to be a truly vile organization, seriously out of touch with the negative impacts of its actions on medical patients of all sorts, and disinterested in learning from those whom it should be serving.
In the meantime, the Diagnostic and Statistical Manual has gone to the publishers and will be on the street by May 2013 (at $199.00 a pop, no wonder the APA has rushed to publish!). Knowledgeable people I've talked to are saying that there is no longer any realistic option for changing the DSM -- it can only be boycotted. Possibly worse, I understand that the APA has withdrawn ("embargoed") all of the DSM-5 diagnostic criteria and discussion drafts from its own website. There may have been last-minute changes to the document that nobody outside APA has seen yet, but we won't know what they were until May. This strikes me as a classic example of controlling the discussion by exercising censorship against critics.
For those of us who can spare the time to read up on the issues and actions surrounding the DSM, I would commend two resources (one of them fairly short, and the other very deep in many articles):
Dr Allen Frances, MD, and Chair of the APA Task Force for the previous version of the DSM (13 years ago) has summarized status in the Huffington Post here: http://www.huffingtonpost.com/allen-frances/terrible-news-dsm-5-refus_b_2473321.html?utm_hp_ref=tw
Suzy Chapman, a patient advocate in the UK, maintains a website dedicated to tracking the pending revision and release of the 5th edition of the DSM. See http://dxrevisionwatch.com/about/
Meantime, here on Living With TN, I (Red Lawhern) propose to set up a special discussion thread (separate from this one) which may become the basis of a published paper. I want to hear about the abuses or difficulties that face pain patients have experienced as a result of being written off by their medical doctors, and assigned a diagnosis of psychiatric or psychological disorder. I want to give our members a public voice among many others who have decided that it is time for the psychiatric profession to correct the irresponsibility and egotistical arrogance of so many of its professional practitioners.
The thread will ask you to write your own stories in your own words. But I will ask each contributor to try to address some central questions:
- How old are you and how long have you had face pain?
- What is your present medical diagnosis?
- Have you had unsuccessful medical or surgical treatments?
- Have you ever been "fired" by a medical doctor who refused to further treat you?
- Has a medical doctor ever referred you to a psychologist or psychiatrist for evaluation?
- What was the finding or diagnosis of the psychologist or psychiatrist?
- As a result of the psychiatric diagnosis, was your medical care affected? How?
- Have you ever been denied medical insurance coverage or payment because of a psychiatric diagnosis?
- By contrast, has counseling or therapy ever aided or assisted you in managing your face pain?
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Our members may recognize other questions or a better phrasing of the questions above. So before I post another discussion thread here on Living With TN, I encourage you to offer suggestions in this one.
Regards and best to all
Red Lawhern, Ph.D.
Moderator and Resident Research Analyst
When I first began this "lovely" TN journey and was looking for an answer as to the pain I was having I went to a local hospital only to be told that I didn't look like I was in pain and was obviously looking for drugs. If the neanderthals that wrote this article think it is "all in our heads" I am surprised they havent brought up the drug abuse angle as well.
I have thought for years that the medical world was going backwards and this proves me right, although I would have preferred to have been proven wrong on this point.
Wendy
crashgirl said:
I have thought for years that the medical world was going backwards and this proves me right, although I would have preferred to have been proven wrong on this point.
Wendy
Or is that that medicine has kind of hit a limit or a barrier in protracted chronic pain syndromes that it is finding it very difficult to surpass causing it to raise the spectre of psychiatric discipline?
Interesting point Rosa..