A Cure for Morgellons disease?

 the MRFEvery doctor has those patients in their practice. They have chronic pain or other myriad of symptoms but all the blood tests, scans, and even biopsies keep coming back negative or normal. Yet the symptoms persist and the patient keeps returning for follow up visits convinced that they have some horrible disease. We used to call them hypochondriacs but more politely and professionally these patients are diagnosed as having one of 5 different Somatoform disorders (aka, psychosomatic disorders). These include;

  1. Somatization Disorder – The catch-all diagnosis of multiple unexplained and usually chronic complaints.
  2. Hypochonriasis – Unexplained pain/symptoms dominated by a preoccupation with the belief that the cause is a serious disease (i.e. cancer).
  3. Conversion Disorder – A sudden loss of normal neurological function (vision, hearing, ability to walk) or abnormal neurological symptoms (seizures) in the absence of a clear cause and usually in the context of a recent severe psychological stressor (i.e. trauma).
  4. Pain Disorder – Pain in one or more sites without an obvious physical cause.
  5. Body Dysmorphic Disorder – Preoccupation with a physical sign or defect that is not evident to others.

Most non-psychiatrist physicians are hugely reluctant to make a diagnosis of a somatoform disorder in these patients. They fear the potential legal and professional ramifications should they diagnose the problem as “idiopathic” when actually the patient really has pathology and the doctor is an idiot.

But even deeper is the concern among most physicians that their patients will react very adversely to being told that no physical cause for their symptoms can be found and that in all likelihood they suffer from a psychiatric disorder. I.e. “it’s all in your head”.

It’s not a baseless concern. To have a psychiatric cause for a physical symptom caries very negative connotations in our society. Patients fear that people (including their own family members) will consider them to be “crazy” or be accused of “faking” their symptoms for secondary gain.

However, these patients are neither crazy nor are they faking their symptoms (part of the process of making the diagnosis of somatoform disorder is ruling out malingering i.e. patients who fake pain to get narcotics or win lawsuits). These disorders are as real as depression and now two new studies suggest that reassuring these patients that their symptoms are not caused by some horrible disease can be quite therapeutic.

The first study from Germany found that patients with somatoform disorders were more likely to misunderstand what their doctor is telling them and believe that they have a serious physical illness. The second study found that 10 sessions of cognitive behavioral therapy designed to relieve stress, increase emotional awareness, and become more socially active helped these patients think differently about their symptoms.

The take home point is that clear and direct communication with the patient is essential and that psychotherapy, behavioral therapy, and possibly pharmacotherapy for depression/anxiety should be started as soon as the diagnosis of somatoform disorder is seriously considered.

Obviously these studies have significant implications for those who believe that they are suffering from the hypothetical disease known as “Morgellons”. The main problem with Morgellons is that in the absence of any proof of a physical cause for their bizarre symptoms, these patients have many characteristics of somatoform disorders including an overwhelming belief that they have a serious physical illness.

And it’s not helping that entire organizations have formed to promote the belief that Morgellons is NOT delusional parasitosis and/or a somatoform disorder. These organizations appear to be perpetuating the negative connotation that physical complaints can be somatic in origin. For example, in their co-authored paper, Ginger Savely and founder and Executive Director of the Morgellons Research Foundation Mary M. Leitao write,

“The vast majority of patients with this disease have been diagnosed with a psychosomatic illness. Typically, patients have sought help from between ten and forty physicians and report that their symptoms are not taken seriously.”

Actually, if they have been diagnosed with a psychosomatic illness then their symptoms have been taken very seriously because they have received the correct diagnosis that fits their clinical presentation and the one that has the best potential for effective treatment.

It is very common for patients with somatoform disorders to have seen multiple physicians and have undergone multiple tests before finally getting psychiatric help. The first study mentioned above helps to explain that this happens as a result of misperceptions and miscommunication between patient and doctor.

In the very least this study describes and explains the behavior of Morgellons patients a whole hell of a lot more than any “research” from the Morgellons Research Foundation ever has. The best scientific and medically ethical approach for Savely, Leitao, and the rest of the MRF would be to consider alternative physical diagnoses for their patients only in the context of treatment failures for psychiatric illness.

I.e. they need to ensure that psychiatric causes have been ruled out FIRST before looking for a physical cause. In this way patients with a true somatoform disorder can get appropriate treatment without bouncing from physician to physician.