I was given permission by Amelia Withington to post this letter which was written to the Psychiatric Times as well as their subsequent response. The Letter to the Editor was written in response to an article that was published in the August 2009 issue of the Psychiatric Times. I decided not to include a link to that article because the pictures in the article are very disturbing and explicit (you can find it if you search, but be forewarned). Unfortunately, the Psychiatric Times did not publish the Letter to the Editor shown below, but instead, wrote a response to the letter which is also shown below as well.

In a bit of unrelated news here is a very positive comment I received from Amelia …

There was literally a "swarm" of interest in our Morgellons booth at the LDA/ ILADS meeting–I can’t tell you how many health care professionals would do a double-take and say, "that’s what my patients have been showing me/telling me about".  We thought we had brought too many materials, but gave most of them away by the end of the first day.

All one has to do is pop over to LymeNet.org and do a search on “skin crawling” to know how wide spread this is in that community alone. Rest assured there are many laboring hard on our behalf, including those whose names you’ll find at the bottom of the Letter to the Editor shown below. I would like to say thank you to those who wrote this letter, we are grateful for your efforts.

 

Letter to the Editor of the Psychiatric Times

September 20, 2009

As a group of concerned physicians, nurses and scientists who work with patients who have chronic infections, including skin manifestations which are difficult to diagnose and treat, we were appalled by the verbiage which accompanied the photo essay on psychocutaneous disorders in the September 2009 issue. 

First, from a psychiatric standpoint, it is inappropriate to use the term “psychological aberrations” instead of a specific psychiatric diagnosis or condition.  Next, the allegation that the patients “drift” from one physician to another implies a judgment on the nature of the quest to find a health professional who is committed to finding relief for the patient’s suffering.

Such patients are further maligned for waiting until they present as “an emergency” (sic).  If a patient is repeatedly turned away by one practitioner after another, it is understandable that they might be reluctant to seek help until the condition is perceived as an emergency.

An important concession in the “essay” reads “pharmacological intervention may benefit such patients”, as an appendage to the admonition that “traditional mental health interventions are almost always required if the aberrant behavior is to cease”.

The dermatologists who wrote the article go on to define factitial dermatitis as being self-induced, for secondary gain.  Given that scratching oneself is often a response to itching, it should  come as no surprise that  lesions are most often seen in “easy to reach” areas.  However, the fact that patients complain of accompanying pain and itching bears further investigation, particularly if such symptoms preceded the scratching behavior!

“Patients who self-inflict neurotic excoriations are more likely to admit to manipulation of the skin than those with factitial dermatitis”.  The patient who caused the scrotal lesion in figure 6 “simply because it itched” most likely did not view his symptom as “simple” at all!  He did not conceal that he scratched the area.  The value judgment inherent in this caption projects scorn onto this patient’s presumed “weakness”, as well as onto the patients who used  “caustic disinfectants” or who “created dramatic lesions with manicure instruments to gouge out the ‘chiggers’ she believed had infested her scalp for years”.

We contend that none of these patients set out to create “dramatic lesions” or to superimpose infections on areas of severe itching.  We have seen many non-delusional patients who have been to many doctors, desperately trying to find someone who will believe in the suffering they endure.  For most of these patients there is usually a reason for their itching, the nature of which is usually anything but “simple”.

Ruling out substance abuse and related skin sensations is important, as the article notes.  It is extremely rare to see a patient with true delusions of parasitosis in the absence of a pre-existing psychiatric illness.   It is also notable, as Dr. William T. Harvey has observed, that discussions of “delusions of parasitosis” have come into the medical literature primarily in the last 50 years.  The reasons for this are likely multifactorial, and may have to do with ecological changes, exposure to toxins, antimicrobial resistance, and a host of other factors.

Above all, we implore medical professionals in all specialties to resist the urge to belittle the patient whose diagnosis and treatment is not straightforward.  We doubt very much that any of these patients intentionally set out to torture themselves in order to gain satisfaction from baffling doctors.  What we saw in the photos as well as the accompanying commentary are nine patients with a long history of suffering, who still failed to find any understanding or relief after seeking medical attention.

Sincerely,

Amelia Withington MD
Attending Psychiatrist
Crozer-Chester Medical Center
Upland, PA

Raphael B. Stricker, MD
Past President
International Lyme and Associated Diseases Society
Bethesda, MD

Randy S. Wymore, PhD
Director, OSU-CHS Center for the Investigation of Morgellons Disease
Associate Professor of Pharmacology and Physiology
Oklahoma State University, Center for Health Sciences
Tulsa, OK

Cindy Casey, RN
Director, The Charles E. Holman Foundation
Austin, TX

Ginger Savely, FNP, DNP
TBD Medical Associates
San Francisco, CA

 

Response to the Letter to the Edtior

To The Editor:

We appreciate the concerns expressed by Dr. Withington, et al, regarding our recent photo essay.  The co-signatory healthcare providers and researchers are to be commended for their dedication to and efforts on behalf those who suffer from disorders which are difficult to diagnose and/or treat. That said, and with all due respect, we feel that the correspondents completely over-read, grossly misinterpreted and shockingly over-analyzed our presentation. Moreover, for individuals allegedly concerned about the “scorn” heaped upon patients, the letter-writers certainly approached this subject with what might well be interpreted as a total lack of respect and professional decorum. One might even say scornful.

Let us clarify a few points. It is appropriate for dermatologists to say that “psychological aberrations” are present and allow those more qualified to determine the nature of same.  Conversely, it might be appropriate for mental health providers to allow those who have specialized training and expertise in disorders affecting the skin, hair and nails to determine an accurate diagnosis and treatment plan for those problems properly within their purview.

Secondly, the description of common patient characteristics associated with factitious skin disease stand as a statement of fact devoid of the judgmental implications that the letter writers ascribe.  Including those adjectives helps alert healthcare providers who may not be attuned to these characteristics.

Unfamiliarity with skin disease is patently obvious when the authors take issue with our statements regarding excoriations being located in “areas easy to reach.” The point of that statement was this:  traditional skin diseases (psoriasis, for example) do not spare regions of the anatomy beyond the easy reach of fingernails, whereas self-inflicted lesions, by their nature, often do. That is not a commentary about the importance of whatever pathology caused the patient to seek medical attention. It does, however, help completely or partially eliminate a myriad of diseases from the differential diagnosis.

The authors take offense at several of our patient descriptions. No value judgment, especially not “projected scorn” was intended when we described the massively destructive scalp lesion resulting from self-gouging with manicure instruments as being dramatic! Isn’t it dramatic? Do the authors use a different dictionary than the rest of the universe? Why was it “scornful” to explain how and why the lesion came to pass? The authors also imply that the diagnosis of “delusions of parasitosis” is somehow either always inadequate or inaccurate. We agree: that particular diagnosis doesn’t tell the whole story; it does, however, imply that specific, universally recognized organic skin diseases (again: think of psoriasis) are not etiologic, and that proper referral to a qualified mental health professional (a major point of our essay, seemingly missed by the letter writers) might well in order after non-cutaneous pathology has been diligently but unsuccessfully sought.

Lastly, for the authors of this letter to suggest that we belittle patients with ailments that are not straightforward is demeaning and insulting. We neither said nor implied that patients consciously set out to “torture themselves” in order to “baffle doctors.” What we did say, and would reiterate unapologetically: there are unusual patterns of skin lesions, amply illustrated in this essay, which represent important problems that deserve suitable investigation and sound intervention based upon reproducible and widely accepted scientific principles. That often, if not invariably, includes mental health assessment in addition to any skin-directed therapy.

Ted Rosen, MD
Professor of Dermatology
Baylor College of Medicine
(on behalf of all co-authors)


 

I find it telling that the Psychiatric Times refused to even publish the Letter to the Editor. I also believe this comment taken from Ted Rosen’s response to be far from representative of our treatment.

We agree: that particular diagnosis doesn’t tell the whole story; it does, however, imply that specific, universally recognized organic skin diseases (again: think of psoriasis) are not etiologic, and that proper referral to a qualified mental health professional (a major point of our essay, seemingly missed by the letter writers) might well in order after non-cutaneous pathology has been diligently but unsuccessfully sought.

I’m going to hold my tongue on that remark above.

Please refrain from going to their site and writing a nasty response. That will get us nowhere. The tide is turning in this debate (much more on this later), however it takes time. If I were to list the ailments that at one point were thought to be merely in a persons head you’d be shocked.

I think you are going to find the next several months here on the Mundane Approach very fascinating as we are going to be taking on this very notion of DOP.

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Comments on: "Morgellons – Psychiatric Times Letter to the Editor and Response" (7)

  1. Amelia Withington MD said:

    Thank you for sharing this with your readers, Mr. C! The editor of the Psychiatric Times ended up deciding not to publish either aspect of the exchange, as I think she felt that the climate had become unnecessarily hostile. I do appreciate that the editor informed us of Dr. Rosen’s response; we had hoped to open a dialogue with this group of dermatologists, but it appears that they felt they knew and said all they had to share.

    The original article is posted online in the August 2009 issue of the “Psychiatric Times”. I had hoped that the authors would have thought again about the use of such terms as “dramatic”, as when the patient used manicure implements on her scalp. The first phrase that would have come to my mind is, “desperate for relief”, but of course, viewpoints can differ……

    I hope readers of this blog will take heart in the interest we saw, across the board, among attendees at the LDA/ILADS conferences in Washington DC last week. It is also inspiring that the new president of ILADS, Dr. Robert Bransfield, is Morgellons-literate, and has given three grand rounds presentations on Morgellons at residency programs in New York City this week. I have requested permission for Mr. C to reproduce or summarize Dr. B’s power-point presentation here–I believe there will be more to share soon (I’m just not sure of copyright status or other potential concerns yet).

    This was my second LDA/ILADS conference this year, and what was striking in comparison to last year, besides the increased interest in Morgellons (there was a well-attended conference on Morgellons the second day as well), was the presence of a representative from the CDC and from the FDA on the first day. While I’m not able to report like-minded views yet on Lyme and associated conditions, at least they were there, and there was an exchange of information.

    It is also encouraging that, for the first time this year, the ILADS conferences were opened to attendees beyond non-member professionals (who work directly in health care). I agree with the new philosophy that it is important for people from all disciplines, including patients and advocates, to have the opportunity to be present for the latest updates in research and treatment trends.

    For those who are concerned that the emphasis was mostly on treatment with “traditional Western medicine” methods, please be assured that a major focus of the presentations included methods of supporting the natural immune system responses of each individual affected. It is clear that “one size of treatment” does not fit all, and many of us were there to learn more about naturopathic and alternative methods of supporting the fight against these diseases (sometimes with the intention to be used in combination with more traditional Western medicine approaches).

    There is also consistent awareness of the emotional and financial toll of these illnesses, and affordable and reliable treatment methods are valued very highly (and quite consistent with the philosophy of this site :>). Though it has been a difficult journey so far, I do believe we are all present together at the dawning of the Age of Awareness. Thank you to all of you who are helping to increase that awareness by sharing your experiences! Cheers, AW

    • Thanks Amelia, we always want to hear anything you have to say. Visit more 😉 Also, I corrected the post to show it was the August, issue, thank you for that correction.

  2. Touche! Keep it coming, folks!

  3. […] Morgellons – Psychiatric Times Letter to the Editor and Response « Morgellons – A Mundane Appro… morgellonspgpr.wordpress.com/2009/10/31/morgellons-psychiatric-times-letter-to-the-editor-and-response – view page – cached Posted in DOP, Morgellons, Psychiatric Times by Mr. Common Sense on October 31, 2009 — From the page […]

  4. […] If you suffer from this then you know there is something almost unholy, menacing, and terrorizing about Morgellons. To top it off we get to go through the experience scorned and alone. You might end up labeled DOP or worse. What the doctors refuse to realize is what Amelia summed up so well in her response to the Psychiatric Times. […]

  5. brandicarlene said:

    “For those who believe, no proof is necessary. For those who don’t believe, no proof is possible.” Stuart Chase !

    I just heard this quote on TV tonight and thought it was perfect… hope you all like it. I posted it somewhere else too, but figured it belonged here more than the “pet section”!!

  6. Interesting Article on the Manual of Psychiatric Illnesses and the over use of drugs.

    http://www.newscientist.com/article/mg20427381.300-psychiatrys-civil-war.html?full=true

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