Mislabeling Medical Illness as Mental Disorder

General
21

Hi lambchop,

Good statement you said but i believe like this who are psychiatric doctor's to diagnose anyway...years back when i was at the QE, Birmingham i had to see a proffessor in the field of psychiatry and after he'd gone on abit...i told him straight i could sit here all day and tell you a right load of crap and you'd take it in and he replyed yes i would as we only study the brain.

So how on earth they can diagnose is so misleading to any public member out there :)

lambchop0103 said:

I totally understand both sides of this argument. As a patient who has been diagnosed with UCDT, lupus, neuropathy and my favorite "you are totally fine" and somatiform disorder over the last ten years I get all of our anger and frustration. As a Licenced Clinical Social worker I am actually a bit offended that we are still using terms such as head case. Their are people that have true somatoform disorder. That being said perhaps if the primary care doctors and rhemotologists, neurologists etc took our complaints and history more seriously we wouldn't be diagnosed as a "head case". All illnesses and duffering should be takien seriously no matter how it presents.
22

"CORRECT IN EVERYWAY" Sheila

Sheila W. said:

The system is more and more being built to help the doctors, instead of the patients.

23

Lambchop, do you know of even ONE published set of validated observational data which supports the existence of so-called "somatoform disorder"? Have any field tests been done to establish the reliability of that diagnosis? I would appreciate a literature reference if you have one.

Regards, Red

24

Hi Red,

Lambchop may come up with something you need but just look at this link also...."Somatoform disorder" they have covering several fields of diagnosis already labelled in this field of work...so misleading to people who are ill :)

http://en.wikibooks.org/wiki/Textbook_of_Psychiatry/Somatoform_Disorders

25

Tez, the Wikipedia entry is in some ways a little shop of horrors. Arguably, it takes us back to the bad old days when Freud proclaimed that women who reported the unwanted sexual attentions of their fathers or uncles were suffering from an Electra Complex or Female Hysteria. This is "blame the patient" on a massive scale, and it is one reason for the general disrepute of psychiatry and psychosomatic medicine among so many patients.

There is a book out of the 1970s that I sometimes suggest for people who are having difficulty with family relationships and being pressured to see a psychiatrist. "The Psychological Society -- the impact and the failure of psychiatry, psychotherapy, psychoanalysis and the psychological revolution" (Martin L. Gross, Random House, 1978). In this book, Gross documents what psychiatrists have known for 50 years: that the so-called talking therapies have no useful effect in major psychiatric disorders such as schizophrenia, OCD, borderline personality disorder, clinical depression, or extreme social anxiety disorder. Among client groups who are treated in residence programs, there is no statistically interesting difference in outcomes compared to groups which are placed on a wait list for care for six months. About 50% of both groups will self-report improved conditions six months after initial presentation.

But it is remarkable that psychotherapy is still a recognized psychiatric specialty in hospital and outpatient settings. Counseling and rational cognitive behavior training do have a constructive role to play in empowering pain patients to manage their relationships and cope better with adverse circumstances. But these tools do not address the underlying causes of the pain itself.

Regards and best,

Red Lawhern, Ph.D.

(Senior Systems Engineer)

26

Hi Red,

I totally understand where your coming from 26yrs ago i was labelled a schizophrenic when it was epilepsy with identical behaviour, besides being a manic depressive and bad OCD.

I've been in residence for treatment under force besides the medications and i totally understand your concerns where Somatic disorder is involved as it covers so many issues of the body besides mentally and for members besides people suffering with bad illnesses this diagnosis does'nt help the situation one bit.

Terri :)

27

To continue this thread, 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.. This is cross-posted from Living With TN.

===================================

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)

28

I thought I would share with you, a recent posting to the similar thread that I facilitate on the sister site Living With TN. If members of Life with Lupus are interested in attempting a thread recording their experiences of being written off by medical doctors by referral to a psychologist or psychiatrist, then let me know and I'll set up such a thread here. See bottom of the posting:

=======================

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-ref...

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, on Living With TN and here on Life with Lupus, 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 patients with complex disorders 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 Lupus?

- 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?

===========

Our members may recognize other questions or a better phrasing of the questions above. So before I post another discussion thread here, I encourage you to offer suggestions in this one.

Regards and best to all

Red Lawhern, Ph.D.

Moderator and Resident Research Analyst, LwTN

Member, Life with Lupus

29

Red, what am I missing? Bottom of what posting?

30

Latest Update

Ben Munoz and the owners of Ben's Friends have agreed to mount a patient survey for those of us who have been referred by medical doctors to mental health professionals. Rosemarie Andrade, one of the administrators for Ben's Friends, is setting up short feature links from the main pages of all 33 communities within this umbrella organization for rare disorders. I encourage all who have contributed to this thread, to scan the background explanation for why we are engaging this effort, and then take the survey itself.

I will compile, analyze, and articulate the outcomes of our survey effort in about 60 days, in an article which now has the working title, "In Their Own Words -- Patients With Complex Medical Disorders Speak to the American Psychiatric Association".

The survey is HERE.

The background article is HERE. You will not need a member login at Living With TN, to see the article.

If anyone who has already contributed to this thread would like me to cross-enter your data to the survey forms, send me mail at ■■■■■■■■■■■■■■■■■■■. I'll need to know your user name.

This survey has been announced in the comments column for two blog postings on Psychology Today, and with Ben's blessing, I am opening discussions with staff at the National Organization for Rare Disorders to broaden our outreach.

Go in Peace and Power

Red Lawhern, Ph.D.

Moderator and Resident Research Analyst

Living With TN.

31

I have never been "referred" to mental health by my HMO. However, I was offered/given prosac by a some GPs and Internal med docs several times during the early days of my membership (1998 ish). My complaints were autoimmune symptoms-now that I know. I refused most of the antidepressants.

The HMO was eventualy mandated by the state for patients to undergo a consultation by a psychiatrist and that the reg docs were not allowed to order psych meds for their patients unless first ordered by a psychiatrist who had evaluated the patient.

Is this a relevant scenario?

32

USA Girl, Actually, the circumstance we're trying to gain insight into is what happens when a medical doctor sends a patient to a psychiatrist or psychologist. Under the terms of the DSM-5, the result is likely to be hanging a mental health disorder code on the patient -- and them being denied further medical testing and treatment until the psych treatment fails. However, I will take your comment on board as an input to the article I'm going to write on the overall issue.

Thanks for the input.

Red

33

Thank you Julie... You are most kind.

34

Hi Red,

I've passed a discussion i did on wrong diagnose myself years back through psychiatric doctor's to Scott to see if it would be any good to use also.

Terri :)

35

Thanks, Tez. Wrong Diagnosis is a frequent problem for patients throughout the Ben's Friends communities. Interestingly I also ran into the following statistic in background research for this issue. An estimated 20-40% of all patients seen by a neurologist will present with symptoms that no previous doctor has been able to assign to a recognized medical disorder or disease. Medicine is sometimes more art than science, I fear.

Regards, Red

36

Hi Red,

I know that the psychiatrist's ruined my life through what they did besides half brain damaging me, all down to a doctor calling them in.

There's wrong diagnosis happening everyday one way or another.

Scott will get back to me and let me know if it's any good for what your achieving :)

Lawhern said:

Thanks, Tez. Wrong Diagnosis is a frequent problem for patients throughout the Ben's Friends communities. Interestingly I also ran into the following statistic in background research for this issue. An estimated 20-40% of all patients seen by a neurologist will present with symptoms that no previous doctor has been able to assign to a recognized medical disorder or disease. Medicine is sometimes more art than science, I fear.

Regards, Red

37

Cross-Posted from Living With TN

I should post an update on most recent news for this thread.

1. Ben's Friends is sponsoring a survey for at least 60 days on Survey Monkey. See https://www.surveymonkey.com/s/PF2TFQT

2. The survey has been made visible in comments to three Blogs on Psychology Today, and in comments entered to articles on Huffington Post and Digital Journal.

3. A friend of mine decided to pass on a letter that I wrote to a local reporter here in Charlotte NC. The letter and her recommendation for investigation have gone to five reporters in print newspapers, one of them a national chain. We'll see what comes of this initiative in the coming week.

4. We got over 90 survey responses in the first 12 hours after announcement to 33 Ben's Friends communities with 27,000 members. 10 of those responses were from people who saw the survey mentioned somewhere else.

Will keep on truckin' on your behalf. If you haven't done so already, please use the link above and fill out 30 questions, tell your story and add your voice. Ben's Friends will never sell or reveal your personal data to anybody else. The more of us participate, the better chance we'll have of being heard by the medical and psychiatric community.

Regards and best,

Red

38

PS: if anybody would like to talk with their own local or area papers, let me know and I'll ship you the letter I used to start things rolling here.

39

Here's a little "new news" on the DSM-5 front. And overall, good news. The DSM-5 debacle is getting a lot of press in both the US and Canada these days. I recently wrote to two of the candidates standing for election to the APA Board Of Trustees next May (one of them a present officer of that benighted organization). I have removed their identity because I don't have their permission to share this exchange. See below.

Dear ....

In previous correspondence with me, Dr XX voiced an interest in ongoing critical reviews of the DSM-5. In that context, I believe the following articles are worthy of your serious consideration and action. As candidates standing for election to the Board of Trustees of the APA, you can no longer afford to stick your heads in the sand or shut your eyes in emotional denial. The credibility of psychiatry as a healing art is about to take a body blow from which it may never recover. And you are doing it to yourselves!

The APA is publicly making fools of its membership and victims of those whom it is supposed to serve. With its profound and negligent errors, the DSM-5 is widely coming to be understood as institutionalized malpractice, if not outright fraud. As Sherene Chen-See so aptly phrased the rhetorical question, "Is the DSM-5 Turning Psychiatric Diagnosis Into a Crock?" Her question now deserves to be answered with a resounding "yes" by both the lay public and organizations of government.

Recent Criticisms:

On the front page of this morning's National Post of Canada: "The Sickening of Society:" New Psychiatric disorder could label people who worry about their physical health as mentally ill." http://news.nationalpost.com/2013/02/18/diagnostic-and-statistical-manual-of-mental-disorders/

Another syndicated article with similar title by Sharon Kirkey, appearing in O-Canada, Windsor Star, Montreal Gazette, Huffington Post, and the Ottawa Citizen among others: http://o.canada.com/2013/02/18/new-catch-all-psychiatric-disorder-could-label-people-who-worry-about-their-health-as-mentally-ill/

A letter sent to the APA leadership and published online by the Board of "Pain-BC", a non-profit organization concerned with advocating for pain patients:
http://o.canada.com/2013/02/18/new-catch-all-psychiatric-disorder-could-label-people-who-worry-about-their-health-as-mentally-ill/

==============

From this background, I would offer an insight: it's time for you to wake up and smell the coffee! If you do not get out in front of this rushing train, you're likely to get personally run over when the APA is successfully sued for harming patients, or restrained from publication by a court order. The APA has clearly failed abysmally in its duty to "first do no harm".

I see three possible routes for avoiding the coming train wreck -- the first of them within your individual powers to enact.

(a) Withdraw your candidacy from the APA Trustees and make your reasons known publicly.

(b) Advocate for an immediate emergency meeting of the present Trustees, to suspend the DSM from publication pending an overhaul of its major errors. High on the list of those errors should be those identified by Dr Allen Frances in his Psychology Today articles, referencing Suzy Chapman's detailed analysis of DSM-5 impacts on medical patients. Also constructive are the summary remarks of Sherene Chen-See on Digital Journal [http://www.digitaljournal.com/article/341589] .

The special task force should include medical doctors and educated lay people with complex medical problems among its sitting members, as well as sociologists, psychologists, educators and other stakeholders. If it takes you longer than a year to recognize and fix the screw-ups in the present document, then somebody is deliberately obstructing the process. This is not rocket science. An excellent rule of thumb is that if reliable validity and prevalence data aren't there, then the "disorder" shouldn't be in the DSM at all.

(c) Failing the emotionally difficult dose of common sense in alternative b, the APA might publish the DSM-5 with an errata sheet which commits you to a near-term revision of the document -- explicitly to withdraw or suspend disorder definitions for which there is no adequate basis in validity and prevalence data. It should be obvious that this is a less than optimal solution, given that it still places the APA in the position of making darned fools of yourselves in public. But it may be marginally more palatable to those among your members who remain emotionally wedded to disorders they have invented. And it may keep medical patients from being diagnosed with fictitious psychiatric disorders, while the revision is underway.

You cannot be a part of the solutions, if you continue to make yourselves a part of the problem!

Sincerely,

40

I thought I would provide all of us with an update on the subject of this thread. News articles continue to accumulate on the idiocy being done by the APA. Not long ago there was a front-page article in the largest print newspaper in Canada. I am also gently feeling out a couple of radio personalities on the possibility of their hosting a discussion of issues in the DSM-5 which compromise its credibility as guidance for insurance reimbursement to psychiatric professionals.

Finally, I have analyzed the first 180 responses to our Ben's Friends survey and completed a 39-page article titled "In Their Own Words -- Patients with Complex Medical Disorders Speak to the American Psychiatric Association". The draft abstract is as follows:

ABSTRACT

An outcomes survey was conducted online for patients with rare and complex medical disorders who had been referred by a medical doctor to a mental health practitioner. Responses to 29 questions plus patient narratives were analyzed in 180 patient survey records accumulated during February 2013. Although there was significant imprecision in patient data entries, a picture of common patient outcomes emerges that may be instructive to both medical doctors and mental health practitioners.

Patient outcome reports suggest that medical professionals should exercise self-restraint in attributing physical symptoms to presumed "causes" in the patient's mental state. Of 180 medical patients referred, 97 reported "no success" in previous medical treatment, and 62 reported "some improvement". Just over half of those referred had a tentative or confirmed medical diagnosis. Eighty-one out of 180 reported disagreeing with the referral and 32 reported being told that their medical doctor would not continue treating them unless they went to a mental health professional for evaluation.

Only 67 of 180 referred patients answered "yes' to the question "has treatment by a mental health professional helped you? "

===================The draft is now out for review and comment to a small and trusted circle of colleagues and friends who are expert in chronic face pain. I have an offer of publication for a 600-800 word extract of the work in a Blog on Psychology Today.

I'll keep y'all posted.