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Physical Illnesses May Soon Be Labeled “Mental Disorders”

You can help prevent the creation of Somatic Symptom Disorder. After reading this piece, click on the link to Dr. Frances’ article, “Mislabeling Medical Illness as Mental Disorder." He has the best chance to get your feedback (via "page views" and comments to his piece) to the American Psychiatric Association before the new manual for mental disorders goes to press. Read More

Thank you, Toni

Thank you, Toni, for a personal perspective on Dr Frances' commentary in which he and I set out our shared concerns for diverse patient groups for the implications of the SSD construct and its catch-all criteria.

I'd like to make a couple of points in response to issues you raise:

Although it is the case that the proposals for the "Somatic Symptom Disorders" section of the forthcoming DSM-5 has garnered little attention in mainstream media, the DSM-5 Task Force and the SSD Work Group are well aware that international advocacy organizations, patients, caregivers and advocates are very strongly opposed to the SSD criteria.

Since February 2010, there have been three, widely publicised stakeholder review and comment periods. During the second DSM-5 public review (held in May-June 2011), APA reported that the 'Somatic Symptom Disorders' proposals attracted more responses than almost any other section. (Copies of a round 90 of these submissions, including submissions from advocacy organizations and professional bodies, across the three stakeholder comment periods, are compiled on my website.)

As I've said in the commentary, "... rather than revising in favor of less inclusive requirements or subjecting the entire section to independent, external scientific review, the Work Group's puzzling response [to significant stakeholder opposition] has been to lower the threshold even further from 'at least two from the B type criteria' to 'at least one' – placing even more medical patients at grave risk of attracting an inappropriate mental health diagnosis."

Second point: If patients have secondary anxiety, depression or other conditions for which they would like access to therapies or to psychotropic medications and to have these covered by insurance, there are a number of other disorder sections they could already be accommodated under without being assigned a new and untested mental health disorder that subsumes the DSM-IV categories previously termed "hypochondriasis," and "undifferentiated somatoform disorder" (plus a couple of others).

This new SSD disorder category will serve as an umbrella term for patients perceived as "catastrophisers," "over-vigilant," or "over involved with their symptoms" (or over-involved with their child's symptoms) or whose coping strategies are considered "maladaptive" - as well as encompassing those with diagnosed illness or general medical conditions who are perceived to have become "consumed" by "illness worries" or where their levels of distress in response to illness or their perceptions of impairment are considered in excess of what would be expected from their patient history, physical examination or laboratory findings. So I see no benefit, myself, to any patient to have "SSD" stamped across their file.

"… change the criteria so the

"… change the criteria so the disorder includes only those who truly suffer from somatization."

If they are so careless to lable everybody with a chronic disease as "somatizing", I wonder if that condition actually exists. Is there any evidence fot that?

re: ...change the criteria so the..

Very good point. Indeed the idea of 'somatization' is at best extremely problematic.

I discuss these problems and those of all psychogenic explanations for physical impairments in my book 'Authors of our own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses', details which can be located on Amazon, as well as elsewhere.

I was one of the 90 who submitted objections to the new categories, though, it has to be said, I object to the 'old' categories also, for reasons related to anonymous's comments.

About Criteria for Somatic Symptom Disorder

I challenge the professional psychiatric community to produce ANY body of controlled, randomized trials data or independently validated observational data which establish the existence of a mechanism by which emotional distress can be converted into physical pain that was not pre-existent before the distress itself. I believe there is an excellent case to be made for the assertion that psycho-somatic medicine as a field is founded on the opinions and equivocations of professionals who have a financial self-interest in the assignment of these diagnoses and their legitimation as a basis for Insurance and individual payment for "services" rendered.

In the words of Thomas Szasc, this is truly the "manufacture of madness".

Sincerely,
Richard A. Lawhern, Ph.D.

What does Georgetown and Canada Think?

Rheumatologist Arthur Weinstein, named one of Washington D.C.'s Top Doctors in a current circular, testified at the 2010 review of the IDSA Guidelines Hearings, ordered by Connecticut's then-attorney general. His speech was notable in suggesting those with ME/CFS, FM, "post-Lyme," GWI, etc. be lumped all together. ".. we [emph. mine] are doing just that" didn't specify whether his partners in doing so were at Georgetown, or in the IDSA overall. There was a good deal of open discussion during that hearing of "medically unexplained symptoms." MUS is also the subject of this presentation from the U.K.:

http://www.rcpsych.ac.uk/pdf/8 Ash IC2012.pdf

This paper is frighteningly notable in that psychiatrist Simon Wessley, chief diluter and denialist of ME/CFS and Gulf War Illness (again, read it for yourself) is tied to insurance multinationals, and was a primary supporter for a lay-published anthropological thesis (Impotent Warriors) tying the fatigue and symptoms passed on to military spouses, including burning seminal secretions, to emotional guilt of afflicted soldiers. The study was paid for in part by the Canadian Ministry of Defence.

Ehlers-Danlos Syndrome and SSD

Ehlers-Danlos syndromes (EDS) is a group of genetic collagen mutations that have been particularly suspect in the eyes of doctors, many of whom refuse to think through how a problem with the body's most abundant protein can literally affect the entire body. EDS is akin to having a foundation problem in a house; with such a fundamental structural problem, the entire house can fall apart, and seemingly unrelated problems can all be linked to the foundation being unstable. We have been fighting mental illness diagnoses for decades, most arising because doctors who should be helping treat us decide we're too obsessive about finding the answers, or in getting help, or simply because they feel nothing should be giving us so many problems. The new definitions set back even advocacy for EDS—how particularly easy would it be for me to be diagnosed? I'm an advocate for families with EDS helping them through the problems I've faced, and as such, am constantly "obsessed" about my own illness. Some of us with EDS wind up under involuntary commitments, because no one could be that sick. It's far too easy to classify incurable or complex disorders as mental illness already, without making it easier.

unbelievable

...that could have been me if MS hadn't progressed far enough to finally be recognized for what it was/is! ...as I read the comment above, my heart started twisting too... three of my nieces have EDS...this is quite disturbing. You know me and my family history Toni... can you imagine how many things would have been missed if several of us received this ridiculous "diagnosis?"

OY... going over to that link... thank you!

I'm kind of wondering if the

I'm kind of wondering if the diagnoses is based 100% in hard-nosed science or if there is some percentage of commercial self-interest involved given that new diagnoses = new income stream: never hurts to add a few new cars to the gravy train, eh.

This would put us back in the "crazy" bin

I have had Fibro for years, just recently looking into it after toughing it out for around 7. This would set me back to being treated like it's all in my head. It would also set physical reseach back, because why would they investigate any further if it's all in my head again. The pharmacutical companies must be funding this research, because clearly they are the ones who will benefit.

I have some experience with being misdiagnosed with this and nearly dying

My father in law is a heart transplant surgeon. He misdiagnosed me with this mental illness and shared his thoughts with at least 2 of my doctors, my primary care doctor and my rheumatologist. This had drastic effects with my medical care. I nearly died from burst blood-filled ovarian cysts which I had for at least 2 years before having an emergency hysterectomy. The ob/gyn said I would not have lived another day, as my remaining left ovary was blood-filled and larger than his fist. I had heavy periods since having a tubal ligation at age 34. I had symptoms in each of the categories listed for Somatic Disorders, but I had them because I have Ehlers-Danlos syndrome and I have atrial fibrilation. I lost my career because of the timing of the surgery. It wasn't until reading this article that I really understood what it was he was claiming to my doctors, as he had called me a hypochondriac. This criteria cannot be changed or many people would be misdiagnosed and could face dire consequences, as I did because of my father in law's manipulation and his toying around with psychology. We need to be protected FROM the medical profession, not victimized further. Imagine the effects of this passing. What would happen to people after being wrongly diagnosed? Would they become traumatized and unable to work, or would they die from lack of treatment? There is no "checks and balance" system in the health field, but there needs to be, based upon the number of mistakes made. Please don't make it easier for mistakes to occur and lives to be lost or horribly affected.

Thanks for your comments, everyone

I'm sorry I can't respond to each of you individually. But I hope you'll go to Dr. Frances' article (cited twice in mine) and copy and paste your comments there because he's the person who is in contact with the people at the APA who have the final say on what will go into the 5th edition of the DSM. If you read Dr. Frances' credentials, you'll see why!

All my best to all of you. Your stories have moved me deeply.

Toni

CPRS and Paget bone disease

point me to to nut house quickly .... 5 years ago I was diagnosed with complex regional pain syndrome after breaking my elbow in 2 places ...pain was unbearable ...now almost 5 year later I have now after A LOT of complaining been diagnosed with pagets bone disease after the dog (LAB 7months old) hit my knee and cracked my femur ...hmmm is the treatment for pagets bone disease going to also fix the pain I have through my arm cannot wait to see....hope there is plenty of room as I am not sharing in the nut house

somatic versus physical

I have actually had both a somatic illness and am fighting a rare autoimmune disorder. During a time of extreme stress I developed Conversion Disorder (physical paralysis in response to emotional stress) but successfully beat it. I was diagnosed with Behcets Disease. I did research and helped my doctor diagnose me. By the definitions here, I would be labeled as mentally ill (I AM bipolar but that's beside the point) and my autoimmune issues would be labeled as "all in my head". I had enough doctors do that over the years. I don't need it to become status quo.

'somatic versus physical' is incorrect

It is incorrect to say 'Conversion disorder' is a diagnosis of a 'somatic' illness. As the dictionary shows, 'somatic' means related to the body, so a somatic illness will be Multiple Sclerosis, cancer etc.

Many people get this wrong because of psychiatric terminology. The use of the prefix 'soma' in these contexts is to say somehow the metaphysical (beliefs, lies, delusions, 'bad thinking') causes PHYSICAL (as in 'somatic') disorder. Hence the use of the word 'somatisation' and 'somatoform' (a term not in the OED but which is used to denote 'mimicking' a bodily disorder. I discuss the terminology in my book.

As for a diagnosis of 'conversion disorder', there is much wrong with that diagnosis and other psychogenic explanations, again which I discuss in my book. It's your choice whether or not to accept that diagnosis from your doctor - but the unsoundness of the diagnosis is very dangerous for people as a misdiagnosis of organic dysfunction, on various levels. I also discuss the problem of attributing serious physical dysfunction to 'stress' in the book. Psycho-social 'stress' explanations are particularly unsafe for various reasons.

involved patients

Despite the points Angela is making, i think you're raising another very important issue with this diagnosis, Debra: Anybody who is doing their own research on their symptoms might be considered "excessively" involved... I could even see some doctors throwing this label on patients when they're frustrated with the amount of research we're doing...

CRPS Research

I have a GP who admitted not knowing much about CRPS, I took the time to print some info and send to him. I wanted to debunk myths of CRPS being in my head and his mindset of pain medication being taken only to forget about pain. For this now I feel I have been viewed as mentally defect and overly focused on my symptoms. Yet, just recently the good doctor took my blood pressure ( I am full body CRPS) he watched my arm turn red, then sent me for blood work. I had told him no way this would work, I know how my body reacts to the slightest of things. I endured 5 attempts at a blood draw, including 2 from hand with no luck. My body was in flight / fight response. Next day I am in full blown flare up and can barely walk or raise my arms. Pain so bad I vomit so no way to take pain medication or neuro blockers. If I cannot mentally relax myself I'll be headed for the emergency room to endure odd stares and drug seeking questions. It's the life of a chronic pain patient. Seven years ago I sat on local boards in the community, ran a business and did fabulous things. Now? I fight just to be treated like an intelligent human being. When and how did I lose my rights as a patient to be involved and informed in my treatment? It's not just here, I dealt with same issues when battling breast cancer.

Thank You, Toni Bernhard

Toni Bernhard, thank you for this timely and informative discussion of the DSM revision due in May 2013. I am a psychotherapist, and have worked with the DSM for over 30 years. I remember several situations in which clients had medical problems that had been missed by doctors, and the clients were referred to me for psychological counseling for 'somatiform disorder' and 'conversion' symptoms. In several situations, I was able to draw on my strong medical background and refer clients for the appropriate medical diagnosis and treatment. In fact, several clients returned to my care and thanked me for saving their lives. If their medical problems had continued to be perceived as psychological or emotional, they would have died.

If the new diagnostic category of Somatic Symptom Disorder is approved, there are several tragic possibilities: 1) patients with difficult-to-diagnose medical conditions will be ignored by the allopathic establishment, resulting in unnecessary pain, suffering and death; 2) patients who are victims of medical error or malpractice will be intentionally labeled as somatic in order for the doctor to protect him/herself; 3) patients with verifiable psychiatric problems will be in the position of having their medical problems ignored because of known psychiatric diagnoses; 4) patients who are insistent that their medical problems be treated for root cause instead of suppression of presenting symptoms (unfortunately common in current medical practice) will be perceived as 'difficult' and given a permanent psychiatric diagnosis on their electronic records.

The overall distressing possibility of this new DSM category will likely be to silence patients from being their own strong advocate; patients whose level of distress, under more respectful circumstances, could be a red flag for further appropriate medical evaluation, diagnosis and treatment.

This it whats crazt, Cause

This it whats crazt, Cause Its not in my head that im in pain daily, these people who whan to pass fibro. off ass just being all in ur head deserve to feel this pain daily like we do and everything that goes with it

Its Not In The Head..Thats Bull!

I was told the same thing by a doctor 11 years ago..its all in your head..you had a rough past..etc. I wasnt depressed anxious nothing..basically a happy person so I knew that was a crock!The pain is sometimes hard to explain but it gets unbearable and am I depressed now? Yes in a way because of the pain! Its hard to try and get going everyday ..and trying to raise 2 grankids with this is just plain awful! I have since been diagnosed with arthritis and feww more things . I was also told by another docotr fibro was in the muscles and tissues..one doctor told me I was in too bad of shape to join his fibro group. Its not in the head..its in the body!!

Additional commentaries from "IBS Impact" and "Mind Your Body"

Readers may also be interested in two insightful blog responses from a couple of weeks ago to our concerns around the SSD category:

From IBS Impact blog:

http://ibsimpact.wordpress.com/2012/12/17/proposed-dsm-5-criteria-may-un...

"Proposed DSM-5 Criteria May Unfairly Label Physical Conditions as Psychological Disorders"

and from Dr Tiffany Taft for "Mind Your Body":

http://opbmed.blogspot.co.uk/2012/12/moving-in-wrong-direction.html

"Moving in the Wrong Direction", Dr Tiffany Taft, Ph.D., Northwestern University

unbelievable

Glad to see people are fighting against us. More research is needed, not less - which this change in diagnostics could lead to as they start researching a label that is inappropriate.

crazy list

Ihave a hidden illness I am not going crazy and there is no need to say that to a person who has a hidden illness or disability. Had people saying that for years to be told that it isn't all in my head and that I have a very painfull condition.

this is one of the most depressing and unethical things I can imagine the medical profession doing

I am 50 years old and very very ill with mitochondrial disease. For years I was told that I had psychiatric issues needing immediate intervention. For years I became more ill and more debilitated. I went from doctor to doctor, from hospital system to hospital system.

This is simply sheer laziness, along with horrible arrogance. Not until I found a little family practice doctor who KNEW in his heart that I was not mentally ill, did I get any help. He had to argue with people way above him to demand testing and biopsies to finally get the diagnosis and finally try to get some relief. Sadly it is too late and the damage is done and I will continue to deteriorate without much help available at this point.

Doctors are not Gods. They need to be more humble and willing to look for the unknown instead of labeling the patient as mentally deficient...which is way easier and sure makes them feel better. But it damages people, in more ways than anyone can imagine. It damages the patient's heart and soul also. Isn't that what doctors take an oath not to do?????

Again, thanks….and please also put your comments on Dr. Frances' blog

Thanks again to all of you who have commented here. You make compelling arguments for not including Somatic Symptom Disorder in the new manual.

Our best chance to stop this is for you to 1) share this article with others so that we can report the number of "page views" to the APA and 2) if you haven't already done so, copy and paste your comments from here into Dr. Frances' blog comment section which I refer to in my piece. He has the ear of the APA committee, having chaired it in the past. Here's the link to his blog piece:

http://www.psychologytoday.com/blog/dsm5-in-distress/201212/mislabeling-...

Thank you all so much,
Toni Bernhard

So let me get this straight...

SSD would assume that a heart attack survivor (like me, for example) with ongoing cardiac symptoms due to Inoperable Coronary Microvascular Disease, who lives with daily bouts of frightening chest pain ("is this something? is this nothing? should I call 911?") and whose daily life is significantly impacted by every decision based on weighing the likelihood of further debilitating symptoms - does not actually have a physical condition after all.

In my experience, it's like a chicken and egg assumption: we feel anxious and worried and afraid because of the physical symptoms we experience - a perfectly normal reaction to a frightening day to day reality.

plus health insurance worries

Plus, i also worry about whether something is covered by my health insurance! Maybe i shouldn't have xyz test because my insurance rates might get hijacked...

hypokalemic periodic paralysis, andersen tawil syndrome

Three years ago i began to receive treatment for a disease that is considered very rare. Almost every medical research paper will state less than 100 people in the world have the disease,, andersen tawil syndrome,,fifty years of pain exhaustion mental confusion and many other symptoms written off as mental disease or defect,,I literally had given up till both of my children began having the same symptoms that I had as a child and worsening in my adult years to the point of being disabled,,

IT is my belief this is a very ancient disease and much more widespread than the specialists believe,,IT is often if not always looked at as a somatic or trash basket diagnosis as that is so much more expedient,,thank god my new pcp had an open mind and with evidence i provided her through my research she has now been treating me for over 3 years..Changes in the dsm will only make it more dangerous for people to be diagnosed,, their are provocative tests that can aid in diagnosis if you are lucky enough to survive them,, karen carr biehl

Holding a hammer doesn't make everything a nail.

Liaison psychiatrists have long considered themselves to be the red haired step child of medicine and this category is another attempt to establish a professional foothold through ideology rather than empirical evidence.

For those unfamiliar, according to Working Group member Dr. Michael Sharpe, a liaison psychiatrist is a medically qualified doctor who has expertise in the diagnosis and management of psychiatric illness in the medically ill; psychiatric illness and other psychological factors that interfere with recovery from medical illness; and bodily symptoms that are not adequately explained by underlying physical illness.

While there are clearly situations where PLs can help people, firmly held ideological beliefs (confirmation bias) can just as easily blind the holders to the damage done when they are wrong - particularly when creating subjective criteria.

Wow.

I am so appalled by all of this. Thank you for getting the word out.

I have chronic neck and back pain, and have been told more times than I can count that I "focus on the pain too much," and that I should go see a psychotherapist.

After years of physical therapy off and on, I finally found a physical therapist who taught me about the nature of chronic pain and the nervous system. Rather than drawing on the shoddy explanations for pain provided by the field of psychology, he summarized research that had been done by actual pain scientists in the field of neuroscience.

What I learned chronic pain can occur when we go through a painful physical experience. Sometimes our nervous systems continue to sense pain even after the initial physical injury has healed. In my case, I was seeing all the wrong people and being told I was a hypochondriac, when really I was experiencing something that has been documented by many people in fields of research other than psychology.

Learning about all of this has really helped me get a handle on my pain and bring my anxiety level way down. This proposed addition to the DSM would be a huge step in the wrong direction.

I'm pretty much done with the field of psychology, in terms of hoping for help with chronic pain.

If you would like to hear an explanation of chronic pain that is actually empowering and based on science, I recommend the following two links:

http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic_pain.html

http://www.lifeisnow.ca/

You can also check out my blog at http://sunlightinwinter.wordpress.com :)

This can be really dangerous!

It really seems like our medical progression is going backwards. This is sad. So who decides that the disease is a mental problem? And at what point do the doctors listen to the patients and run the proper testing?

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Toni Bernhard, J.D., is a former law professor at University of California at Davis. She wrote the award-winning How to Be Sick and, recently, How to Wake Up.

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