For a few years, the Morgellons Research Foundation (MRF) has been registering people who think they have symptoms of something like Morgellons. Last year the registration was moved over to Oklahoma State University, Center for Health Sciences (OSU-CHS), and the the MRF linked to that page, and recommended that people register.

In the last couple of weeks, this has changed quite significantly. Firstly the OSU added a bit of text to their registration page:

NOTE:
Information submitted to OSU will be kept in confidence and not shared with other organizations.

Now, I think this is because, as Wymore said a couple of days ago: “The president of the [OSU] medical school has, in the last six months, authorized a center for the investigation of Morgellons disease, in Tulsa, at the Oklahoma State University Center for Health Sciences“. Since it’s now a proper university authorized research program, authorized by the president (John Fernandes, I assume) , they have to follow certain legal procedures, like not sharing information (like email addresses) gathered from patients.

What this means, of course, is that the OSU can no longer share the registration information with the MRF (and it was perhaps somewhat legally dubious they were doing so in the first place). Now, you would think the MRF would obviously still encourage people to register with the OSU, but actually, no. The MRF actually has removed all mention of registration from their web site, starting with the “Register” link that used to appear on every page.

They also changed the welcome page from:

Please register with us. Your information will be kept confidential.

to:

Please sign up for our newsletter below.

Then on the advocacy page, under “Here are some of the ways you can become involved.”, the old text

2. Register with the MRF. Your registration is vital to our efforts, because it makes decision-makers aware of the multitudes of people who are suffering from this disease. Hopefully, we can interest politicians, if many of their constituents are affected. Your information will be kept confidential. To Register click here (link to OSU-CHS)

was changed to:

Email Advocacy@Morgellons.org if you have ideas for increasing awareness and raising funds for research, or if you want to get involved.

The link to the OSU registration also appeared on all previous MRF Newsletters, but was removed as of the August 2007 Newsletter.

So what’s going on? Why does the MRF no longer inform people about the OSU registration? I suspect this is because now that the OSU is no longer sharing the registration data with the MRF, the MRF no longer gets the email addresses of those people. Since the MRF seems much more strongly focussed on fund raising now (requesting $233,000 for research, probably by advisory board member Kilani’s Clongen Labs), they need as many email addresses as possible for money-raising efforts – especially new email addresses.

Perhaps it is also because the OSU registration page includes two links to the OSU Morgellons donation page, and one of the question you have to answer when registering is “Have you donated to Morgellons yet? (Y/N)“, followed by: “Click here to contribute to OSU Research on Morgellons“. Perhaps the OSU registration was just taking too much money away from the MRF.

 

From the paper:
Diffuse Pruritic Lesions in a 37-Year-Old Man After Sleeping in an Abandoned Building“, by Jeffrey Dunn, M.D., Michael B. Murphy, B.A., Katherine M. Fox, B.A., Am J Psychiatry 164:1166-1172, August 2007:
http://ajp.psychiatryonline.org/cgi/content/full/164/8/1166

A controversial phenomenon possibly related to delusions
of parasitosis inspiring discussion and media attention
is Morgellons’s disease. As in delusions of parasitosis,
patients describe insects/parasites crawling on or under
the skin, are convinced they are infested and contagious,
and produce physical “evidence” of infestation. In particular,
though, patients complain of fibers extruding from the
skin; such particles produced for examination have been
variously identified as cellulose, fibers with “autofluorescence,”
fuzz balls, specks, granules, Strongyloides stercoralis,
Cryptococcus neoformans, “alternative cellular energy
pigments,” and various bacteria. In no case, however, has
an infectious etiology for these mysterious symptoms
been confirmed. Morgellons’s disease is largely regarded
in the dermatology literature as a manifestation of delusions
of parasitosis (and potentially a means of promoting
patient rapport through destigmatization), despite the efforts
of the Morgellons Research Foundation to promulgate
an infectious rather than a neuropsychiatric etiology.
Until a treatable infectious component is identified, patients
can continue to be treated with neuroleptics—pimozide,
risperidone, aripiprazole—which have been reportedly
effective

Also note eMedicine article by Noah S Scheinfeld, MD, JD, FAAD
http://www.emedicine.com/derm/topic939.htm

Savely et al introduced the term morgellons disease to describe a type of infestation characterized by fibers attached to the skin. The entity appears to be little more than a new designation for DP. Koblenzer and Waddell and Burke have discussed the utility of the term, with Murase et al finding the term useful for building a therapeutic alliance with patients with DP. The Centers for Disease Control and Prevention is currently investigating Morgellon disease.

See also similar sentiments in the Atlas of Human Parasitology, 2007
http://morgellonswatch.com/2007/07/24/morgellons-in-the-atlas-of-human-parasitology/

So it seems that Psychiatrists, Dermatologists and Parasitologists all agree somewhat.

 

The CDC today released a “Request for Quotations” for their Morgellons investigation, which is basically a formality, as the only entity they would qualify to do the work is Kaiser. They also listed the lab tests that would be done (basically all the standard systemic tests).

http://www.fbo.gov/spg/HHS/CDCP/PGOA/Reference%2DNumber%2D2007%2DMorgellons/Attachments.html

They give a list of the work to be done:

2.1. Describe the clinical and epidemiologic features of persons who have reported themselves as having this unexplained skin condition, including assessing the frequency of co-morbid conditions (e.g., neurocognitive deficits, neurologic conditions, major psychiatric disorders).
2.2. Collect information to generate hypotheses about possible risk factors for this condition.
2.3. Assess the histopathologic features of the skin condition based on skin biopsies from a sample of affected patients.
2.4. Characterize fibers or threads obtained from patients with the condition to determine their potential etiology.
2.5. Describe the geographic distribution and estimate rates of illness.
2.6. Describe health care utilization among persons with the condition.

And a timeline:

4.1. IRB [Independent Review Board] Clearance October 30, 2007
4.2. Database of potential cases (study cohort) November 30, 2007
4.3. Database containing all results of clinical evaluations, Including recorded histories and physicals, laboratory tests (See Attachment 001 for required laboratory tests), chest x-rays, digital photos, neuorcognitive/neuropsychiatric examinations. March 1, 2008
4.4. All skin biopsy specimens and fiber samples collected from case-patients . March 1, 2008
4.5. Electronic database containing demographic information, zip code of residence, relevant past health history, such as medications, provider visits, and hospitalizations for cases. Database should include a unique patient identifier to allow linkage of clinical and other test results with demographic, healthcare utilization, and survey data. April 30, 2008
4.6. Database with denominators for all visits (total and by specialty) and hospitalizations during study period to allow estimation of disease rates in the population. May 30, 2008

That’s exactly what you should do if there is some evidence of a new infectious disease, parasite or environmental contamination. You get a patient population (the “study cohort”), and you investigate their symptoms, and see what they have in common, and look for common risk factors and diagnostic markers that might indicate a cause.

What’s a bit unusual here is that the patient population is “persons who have reported themselves as having this unexplained skin condition”, in other words: “people who think they have Morgellons”. This entire study is simply of people who THINK they have Morgellons. Very interesting.

The CDC are investigating Morgellons because it is an “emerging public health problem” and they have “received an increased number of inquiries from the public, health care providers, public health officials, Congress, and the media“, and “some who suffer from this condition appear to have substantial morbidity and social dysfunction, which can include decreased work productivity or job loss, total disability, familial estrangement, divorce, loss of child custody, home abandonment, and suicidal ideation“. All true, but with contested causation.

But wait a moment, why is the CDC getting ready to spend millions of dollars investigating Morgellons, when they simply could go to Oklahoma State University, where:
http://www.healthsciences.okstate.edu/morgellons/vision.cfm

OSU-CHS physicians/researchers have physical evidence of Morgellons Disease
– Morgellons is not psychiatric in origin
– Morgellons is an emergent disease

No only that, but they already have a patient population all of which can be instantly diagnosed by the appearance of fibers under the skin.
http://www.healthsciences.okstate.edu/morgellons/docs/Wymore-position-statement-2-19-07.pdf

Of the thirty or so patients claiming to have Morgellons disease, that clinical faculty have examined in facilities associated with OSU, only one patient likely did not have Morgellons.

100% of the patients, that were felt to genuinely have Morgellons Disease, have large microscopic-to small macroscopic fibers visible under their outer layer of skin.

There are doctors and professors there who have been looking at this for years, and have sufficient evidence to convince themselves 100%:
http://www.mysanantonio.com/news/medical/stories/MYSA072406.morgellons.KENS.1e13fade.html

“I am 100 percent convinced that Morgellons is a real disease pathology,” said Dr. Randy Wymore, an assistant professor of pharmacology and physiology at OSU.

Dr. Rhonda Casey has examined more than 30 Morgellons patients.
“There’s no question in my mind that it’s a real disease,” she said.

So if Oklahoma State University has already figured this out, why don’t they help out the CDC? Do they actually have any evidence? Could it be they’ve been a little hasty in their certainty? Perhaps a little unscientific? Or could they save the CDC some money?

© 2012 Morgellons Watch Suffusion theme by Sayontan Sinha