Morgellons Watch

This morning, (Aug 4th 2006), the Morgellons Research Foundation removed every single reference to Professor Randy Wymore from their web site: morgellons.org

As well as removing all mention of him as “Research Director”, they also removed the “Letter to Doctors“, the “OSU Rounds” article, and all his “Medical Updates”

His email address, along with the email address of the Chairman of the Board Charles Holman, and the Nurse Coordinator Cindy Casey, were removed from the “Contact” page. Leaving only Leitao, Buckner and Cowles.

The MRF contact for medical researchers has changed from morgellons@okstate.edu to morgellons@aol.com (although morgellons@okstate.edu is still valid for any researcher who wants to help the OSU research effort).

Dr Greg Smith and his wife have also been fully removed from the site.

[Update:  Aug 5th - All seven nurses: Cindy Casey, Jo Ann Mangili, Judy Smith, Diane Gay, Kristen Seargeant, Patti Nash and Donna Doherty,  have been removed from the site]

I have no interest in the politics here, but this is a significant event in the brief history of Morgellons. The involvement of Professor Wymore has been a major part of every single news story about Morgellons. His presence lent credibility to the story. Without Wymore, the MRF would never have been able to get the major coverage they have been able to. Without Wymore, the CNN, Today Show, GMA and Prime Time Medical Mysteries shows would never have happened.

Without Wymore’s participation in the publicity machine of the MRF, the public interest would have been greatly muted, and the CDC would not have been forced to start an investigation, which in turn led to even more publicity.

My position all along is that there has not been sufficient evidence to support Morgellons being a distinct disease where fibers emerge from the skin. I felt that the excessive publicity given to Morgellons, based on this limited and unscientific evidence, was damaging to the health of a vulnerable segment of the population.

I hope that these changes at the MRF will prompt the media to take a closer look at exactly what has been going on, and to temper their sensationalistic, entertainment based, health reporting.

I also hope that people who think they have Morgellons might be prompted to consider that perhaps there is some doubt in the matter, hence consider they might have something else, and hopefully seek appropriate treatment.

Post on Lymebusters from Dr Greg Smith, Medical Director of the Morgellons Research Foundation 8/2/2006, around 10 or 11 PM, PDT :

It is with heavy heart that I write this note. I have been associated with the Morgellons Research Foundation as a member of the board of directors and Medical Director for almost two years. What has come to pass has saddened and troubled me. I am especially upset that I recently posted a note on Lymebusters asking Morgellons patients and their family and friends to donate to the MRF. It was, and still could be, an exciting time for all of us with this disease.

` Unfortunately, several events over the last month have disturbed me to the point I must retract my previous letter asking for donations to the Morgellons Research Foundation. I ask that you do not donate to the MRF. Instead, donate directly to Oklahoma State University to help fund the research being done by Randy Wymore.

I make this request because I cannot assure you the money you donate would be used appropriately in the fight to understand and conquer this disease.

My wife, Judy, had agreed to become Treasurer for the foundation. We decided it would be prudent to review the financial records and bank statements of MRF before she accepted that responsibility. I felt this was important to protect ourselves and to become familiar with the accounting system being used.

Mary Leitao has thus far not allowed me to see those documents! She said the MRF attorney was revising the by-laws and she would forward when completed. But I could see no reason she should not be able to send the financial information.
As I cannot review the documents, I cannot say that donations to MRF are being used appropriately to investigate the bizarre disease from which we suffer!

Another major concern I have is the apparent lack of desire by Mary and a few others on the Morgellons Research Foundation board to structure the foundation on a more business-like model! Even though MRF has been incorporated and has a board of directors, the decisions of the board seem unimportant to those individuals who have been with MRF the longest. Specifically, Mary, Doug Buckner, and Ken Cowles have recently made decisions which were in opposition to the direction and majority votes of the board of directors or which should have been made by the board.

I have served on a number of boards of non-profit organizations. This is the first time I have felt the board was only a formality and business decisions were made by individuals such as the Executive Director regardless of the board decisions and votes.

I found to my amazement that Mary seemed to expect all board members to agree with her and rubber stamp her decisions. When I disagreed with her, she became upset and angry. The adolescent “drama’ which has ensued has been emotionally draining. Worse, that energy would be better spent trying to understand this disease and educate the public and the medical community about it.

This is not the first time I have experienced the emotional and, to me, rather irrational response Mary has exhibited when someone affiliated with MRF disagreed with her. It is tragic that Mary reacts in that manner, as she now seems to view me and some others at MRF as her enemies. Yet I had been her staunch supporter and will always feel a debt of gratitude to her. MRF was a beacon of light and sanity for me early in my Morgellons journey!

Personally, I remain committed to doing everything I can to further our common goals! But I cannot expend my energy on peripheral, emotional issues. I do not know if I will be welcome at the MRF in the future. Nor do I know if I even am willing to again be associated with the foundation. But I remain committed to “the good fight” for my health, my wife, and all Morgellons patients.

I wish to emphasize I have no evidence of wrong-doing by anyone at MRF. But since I was not permitted to review the financial records (which felt very, very odd!), I cannot in good faith ask anyone to contribute to the foundation.

My best and warmest regards to you all! Remember: FORTITUDE!

Greg Smith
(Gregory V. Smith, MD, FAAP)

Post from Cliff Mickleson, also emailed to me:

New and alarming reports have recently begun to circulate concerning financial irregularities and mismanagement of funds at the Morgellons Research Foundation.

The emerging potential scandal and its attendant controversy is currently focused on alleged malfeasance of office and misappropriation of donated funds by MRF founder and Executive Director, Mary Lieto.

According to sources close to Board Chairman Charles Holman, Ms. Leito has consistently refused to produce financial records or to account for a large number of donations bequeathed to the foundation by donors.

This, despite repeated requests by Board members,

The missing financial records being sought cover a span of several years.

“We are doing all that we can to account for the donations made to this organization” Says Holman:

“Unfortunately, Ms. Leito is not cooperating in this effort to provide accountability to the public who’s trust she was charged with.”

Mr. Holman’s office reports that they are extremely concerned that they have been unable to recover any record of donations personally received by Ms. Lieto for the year of 2004.

Board members are also seeking access to financial records for subsequent years including, and up to, year 2006.

According to MRF Board members who have been contacted concerning this issue, no records whatsoever have been released for public examination by Ms. Lieto.

“She has consistently refused to return phone calls made to her by Board officers,” reports Dr. Greg Smith, another member of the MRF Board of Directors.

“She also has refused all pertinent information requested by the Foundation’s Treasurer” He added.

A spokesman for several of the officers of the Board of the Morgellons Foundation relates that an official IRS investigation of potential civil and criminal activities on the part of the executive Director and Founder Mary Leito and several others, may soon be under way.

-Cliff Mickelson

Both these posts were deleted from Lymebusters, reposted and deleted again. Other members of the MRF commented

Hey, there, Cliff..!

Hope your post can stay up (this time)….

Charles E. Holman
Chairman, MRF

Cliff, you are right on the money with this one! Thanks for posting and for making public what should have been made public long ago.

Folks, if any of you are making donations…sending it to OSU is the safest bet until the MRF is audited and forced to be lily white.

What’s sad is that they have to be forced!

Cindy Casey
MRF/NAP

Yep, it’s time to call Uncle Vinny! Not only are the financial records not being produced…They also seem to have turned on the medical people..the people that have helped them the most.

They have turned on me for encouraging folks to donate to OSU. Weird, huh?

Cindy Casey
MRF/NAP

The Morgellons Research Foundation is an advocacy group. It has orchestrated the current media coverage by spoon-feeding a story to television news, both local and national. For those in the media who would like to do a similar story, I present the following 12-step method:

Step 1 - Find some Morgellons Patients. This is not difficult. Simply ask around on the Morgellons Research Foundation’s recommended Lymebusters forum. There are many people there who love to talk about their symptoms. Beware, as there are a few oddballs around, who might not quite be on message. Beware of patients with web sites that make them look obsessive, such as Anne Dill on Good Morning America, or Richard Vigil on 10News

Step 2 - V.O. - describe the symptoms of Morgellons in a scary manner, you want to hook your audience here. Note that thousands of people across the country have Morgellons, and there are hotspots of the disease in California, Texas and Florida.

Step 3 - Have the patient describe what is wrong with them, and have them show their lesions.

Step 4 - V.O. - Say these patients are being ignored by doctors, who claim it is all in their heads. It is important to set up sympathetic contrast in anticipation of step 9.

Step 5 - Zooming photos. Show photos of fibers and multi-colored fuzzballs, zoom and scroll while doing this, as it looks a lot more dramatic. Speak with a tone of amazement while describing the photos.

Step 6 - Professor Wymore soundbites - like “there’s definitely something going on“. Show Wymore in his Lab and wearing a white coat. Make it look like he’s an expert in this field. Do not mention he’s not a doctor. Do not mention he’s actually an assistant professor.

Step 7 - (Optional), show Wymore holding the letter he has written for sufferers to take to their doctors.

Step 8 - More zooming photos, this time describe how people find fibers inside their lesions. Try to make it sound impossible.

Step 9 - Find a doctor, interview him for hours, and show the line where he mentions “Delusions of Parasites“. Ignore complex terms like Neurotic Excoriations, Dermiatitis artefacta or “Case Definition“, as these cloud the issue.

Step 10 - Back to Wymore (or Ginger Savely), and have them say something to make the doctor seem silly. If it’s Savely, don’t mention she makes her living treating people who are convinced they have Morgellons.

Step 11 - A ray of hope: say that, at long last, the CDC is investigating Morgellons. Do not mention they are just investigating if there is any evidence that it exists in the first place.

Step 12 - Tie it up, cut back to your initial patient to remind the viewer of the human side of the story. V.O. about the hope they have. Make it real.

I sometimes compare Morgellons with Chronic Fatigue Syndrome, since they share many of the same symptoms.

CFS took a while to be recognized as a disease (and there is still much debate), since it’s just a collection of common symptoms that the sufferers feel. There is no real physical manifestation of the disease, which makes it hard to test for, since you just have to rely on verbal reports from the patient.

In this respect, Morgellons has a vast advantage over CFS when it comes to being recognized as a disease. Not only do sufferers have lesions on their skin, but most importantly, they have something entirely new to science, something so unusual that finding it immediately settles the diagnosis, since only Morgellons has this symptom.

It’s the fibers.

That’s really all that makes this proposed disease special. The fibers are the key to the whole matter. That is ALL that is needed to establish this as a new disease - you can work out the details of the other symptoms later, but if you simply establish that people are producing fibers, then you’ve proven your case.

The OSU team claim they could see fibers under the skin within 45 seconds. What exactly is the problem here. Can’t they just take a video and show us what they see? Why did they not do this when CNN was there for two days?

It’s very easy. All this talk about Morgellons vs. Delusions is a red herring. Fibers are real objective evidence, nothing to do with delusions. Just show the fibers coming out of the skin and you’ve made your case.

Wymore says he’s personally convinced, but he can’t get enough interest to persue it effectivly as other people think the patients are delusional.

Well, there’s a very simple way of proving that something new to science is going on, which is sure to get people excited.

It’s the fibers, stupid!

Various myths have arisen around the Morgellons story in the media. The problem with such myths is that by repetition, they get elevated from simple misrepresentations and errors to established facts. This site is about investigating some of the more unusual claims regarding Morgellons, and hopefully dispelling the Morgellons myths.

Myth #1 - 4500 People have Morgellons

False. 4500 people have filled in a survey on Morgellons.org, unfortunately the symptoms described in the survey are so vague that practically anyone could qualify as to having Morgellons. No usable case definition exists for Morgellons

Myth #2 - Since the CDC is investigating it, it must be real.

False. The CDC is investigating the Morgellons reports, to determine IF it is real. Dan Rutz, spokesman for the CDC, says “We don’t have any evidence to support that [there's an infectious process going on]“, and “In the absence of any objective review, people have jumped to conclusions and found each other on the Internet and formed their own belief structure.”

Myth #3 - There is photographic evidence of Morgellons

False. There are a lot of photos, particularly of fibers. The problem is that the vast majority of these fiber photos look just like normal fibers from clothing, bandages, bedding and furniture. Fibers are everywhere, and they inevitably get onto your skin. One researcher claims to have found a few fibers he cannot identify, but forensic investigations often have unidentified fibers, so this tells us nothing.

Myth #4 - Doctors have observed fibers emerging from the skin

Dubious. The claim is that fibers were observed “within 45 seconds“, and yet on the recent CNN report, at least six star patients were examined over two days with the CNN cameras present, and using a portable video microscope. The best evidence they were able to present was a single blue cotton fiber laying on top of the skin. If the evidence is so obvious, why could it not be videoed?

Myth #5 - Morgellons sufferers are really sick, and it’s not all in their heads.

TRUE - Not a myth at all, yet the Morgellons Research Foundation seeks to portray this as a struggle between an new disease, and a summary diagnosis of mental illness. The real situation is a lot more complex.

The Morgellons research Foundation is currently gearing up for a new media promotional piece they are organizing with ABC’s Prime Time: Medical Mysteries, possible to be aired in early August. In this piece they will continue to promote these, and other, myths. I believe this deliberate misrepresentation of the facts is encouraging people to make decisions regarding their health care that may be harmful to their health.