Thursday, June 01, 2006

What is the CDC doing about Morgellons?

It has been reported several times that the CDC is forming a "task force" to investigate Morgellons, but I could find no mention of this on the CDC web site, nor did the news stories go into much detail. So I emailed the CDC to see if they could give me the official line on what they are currently doing. I got the following response (dated Thu, 1 June 2006 ):

"CDC is forming a working group to provide scientific overview for an objective review of issues surrounding what we are referring to as Morgellons Syndrome. This multidisciplinary group will develop a strategy by which we would expect to form a scientifically useful case definition, an important step toward answering other critical questions as to cause and possible treatment. We are basing this work on the evidence of human suffering without prior assumptions as to underlying cause. That important question can only be addressed by objective inquiry. / Dan Rutz Communications Specialist, Centers for Disease Control and Prevention(CDC)"

What does this mean? I'll give you my interpretation.

They are "forming" a working group (meaning it's not formed yet), to "review .. issues" (meaning looking at the available purported evidence, and judge its scientific rigour and its public health impacts.)

They are looking at something they are "referring to as Morgellons Syndrome", (meaning they have not judged it a disease, not even a syndrome, they are just picking a name for something that might turn out to be one of them, but is initially just a phenomenon that the media wants investigated).

The "multidisciplinary" group (meaning it has at least two people, including someone for mental health) will " develop a strategy by which we would expect to form a scientifically useful case definition" (meaning they will figure out if Morgellons has enough initial evidence to qualify as an actual syndrome or not, and if so, narrowly define what set of symptoms should indicate "Morgellons" for the purposes of future investigations).

Which would be "an important step toward answering other critical questions as to cause and possible treatment" (meaning, if it is a real disease, you have to have some statistically meaningful evidence of this before moving forward, unlike the current anecdotal or otherwise poor quality "evidence").

"We are basing this work on the evidence of human suffering without prior assumptions as to underlying cause" - (Meaning, people are suffering, so we should do something about it. Possibly they have a real disease, in which case we should track that down. Perhaps Morgellons Syndrome should be treated as a specific type of delusional disorder. Perhaps there are actually several different things going on here. Possibly patients sometimes have some other disease and Morgellons is an unhealthy distraction, in which case we should demonstrate that Morgellons is a fabrication to remove uncertainty in treatment. Either way, it's just good scientific practice to not make any assumptions).

"That important question can only be addressed by objective inquiry" (Meaning - unclear. Did he mean to write: "those important questions", as referenced earlier? Or is he speaking of the "underlying cause"? Or a more general question? Regardless, I'm in agreement, as all important questions should be addressed by objective inquiry.)

The writer, Dan Rutz, is a man I have great respect for. He's the former chief medical correspondent at CNN. He once wrote:

"I left CNN under the pressure of reporting stories "for competitive reasons" even when I knew the information was highly speculative, sensational, and little else. It was difficult to cave in to a management style that favors the sizzle more then the steak and fails to recognize both the positive value of responsible health journalism or the great harm flowing from the opposite."

I feel Mr Rutz must be seeing much of what he describes in the current local TV coverage of Morgellons. It must be frustrating for him to not be able to at least urge restraint. But that's not exactly his current job. His current job is to tell the media what the CDC is doing. He's doing to very good job of that.

After typing the above, I get a Google alert of this story from sfgate.com: which contains this paragraph which make things clearer:

"Not a day passes when I don't talk to somebody who claims to have this," said CDC spokesman Dan Rutz. "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. We really need to debunk this if there isn't anything to it or identify if there is indeed a new, unrecognized disease that needs attention."

The article itself is much better than others in the media so far . I think perhaps the tide is finally turning.

21 Comments:

At 2:54 PM, Blogger johnboy said...

Yes, Margellons, the tide may be turning. There is an old saying that " better be careful what you ask for because you just might get it". The Morgellons people have been asking US CDC to get involved and now they have. The result will be that the idea that Morgellons is a physical disease caused by a communicable biological or chemical agent will be debunked by indeniable experts. The suffereres will have to face the truth and a chance to be truly healed and web sites offering outrageous and dangerous treatments will be sued for damages. Clinics like the one Ginger works for will be put out of business and the owners sued for malpractice. Our society will be a lot healther, and the Public Health Officials will have considerable heretofor wasted time made available to work on real threats like ebola virus, bioterrorism, pandemic bird flu, West Nile virus, etc.
Oh yes, and the peer reviewers and editor of the Am. J. of Clinical Dermatology will be thoroughly embarrased that they published the Vol.7(1) 2006 article by Snavely, Leitao, and Stricker.

 
At 8:15 PM, Blogger insideout said...

This comment has been removed by a blog administrator.

 
At 11:28 PM, Blogger JeeezeLouise said...

Johnboy,

I believe you are overly optimistic. The "Morgies" are told every day, by their doctors, by their friends, by their families, that there is *nothing* there. If and when the CDC gets around to this most pressing public health issue and debunks it, it WILL NOT MATTER, it will be part of the conspiracy that the Morgies already believe exists.

What I'd like to see would be Lisa Wilson stepping up and saying what she now knows to be true - that Travis had serious paranoid delusions and was a hard-core drug addict.

Yes, the loss of his young life is a tragedy. A tragedy that should not be compounded by making him a poster-boy for a disease that did NOT drive him to suicide, if it even exists.

Of course, if Lisa Wilson does step up, it will only prove that They, the Men in Black, have gotten to her.

Gotta run now, I think I see unmarked Air Force jets strafing my water supply.

 
At 7:16 AM, Blogger Smileykins said...

Just what will become of morgellons disease victims when that day of reckoning finally arrives?

They're not likely to thump themselves upside the head when they hear the verdict and say, "Well, what the heck was I thinking anyway?" and rush back to their physicians' offices begging for antipsychotic drugs.

The one true bond they share, is, afterall, a pathological condition of their brain functioning. Some may actually have DOP, but, also, quite a few probably don't. Still, though.

The mentally ill population is sadly rather ignored, and underserved, to begin with, and mental disorders are oftentimes extremely difficult to diagnose and treat, but patient cooperation is paramount.

While the myth of morgellons may finally end up being debunked, I still don't feel much better about the whole thing. Busting up the scam will be awesome, though.

But, you know what I mean? As apparent as it is to everyone else, none of these people realize there's anything going on with their minds, and they still aren't going to when that day gets here.

Ironically, they don't even acknowledge it with its inclusion inside MRF's case defintion: 4.Cognitive difficulties; 5. Behavioral effects. They embrace the rest of that comprised list of symptoms of "their disease" too readily, and while they hang on tightly to the one cognitive difficulty called "brain fog", as well as, perhaps, depression, and ADHD, that's pretty much it.

It seems that many of them hold a very strong, outdated, opinion about mental illnesses as being, "you're either 'crazy', or you're not", which we all know is an incorrect way of viewing actual mental health issues.

There is nothing for them to be ashamed of. The real shame is in the denial. The brain is like any other organ, and just as a diabetic needs insulin due to a dysfunctioning pancreas, if there is a problem with brain function, it is treatable also.

Without proper mental evaluations and treatment, they are all still going to have "that one thing in common", long after morgellons disease has been ruled on by the CDC.

Without that being addressed they're going to remain ill, and the rest of their health problems are still going to take them down further. Their children will still be neglected, and their pets will still be allowed to die.

Delusions refer to a belief that would be seen by most members of society as a misrepresentation of reality, often referred to as a disorder of thought content.
Delusions often are called the basic characteristic of madness.

Some research suggests that delusions give some patients a sense of meaning and purpose in life and result in less depression. Thus, delusions may serve an adaptive function. Types of delusions include:

1. Delusions of grandeur, or the belief that one is particularly famous or important.

* Many morgies feel they have superior intelligence, and that they are endowed with supreme abilities for thinking outside the box. Many believe they've been given their disease for some special reason, commonly referring to themselves as "the chosen ones"

2. Delusions of persecution, or the belief that other people are out to get or harm the person.

*Most morgies display delusions of persecution, without question. I've yet to see any that didn't feel that outsiders are out to do them harm, and they all seem to believe that there is somebody, somewhere, that has unleashed the plague that has befallen them.

3. More unusual delusions include Capgras syndrome, or the belief that someone a person knows has been replaced by a double, and Cotard’s syndrome, where the person believes that a part of the body (e.g., brain) has changed in some impossible way.

*I believe Cotard's Syndrome is also quite applicable.

So, what's the next step?

Can we all just forget about these members of our society, and allow their sufferings, and all the child and animal abuse and neglect to continue, just as long as the myth has been busted?

 
At 1:43 PM, Blogger Tall Cotton said...

I've read two or three different letters from the CDC concerning the formation of a "Morgellons" task force. They were all different, but basically said the same thing. I'm anxious for the outcome of such an investigation, but I don't think that debunking the Morgellons myth will have a positive effect on the existing membership in the Morgellons cult. I think it will only serve to reinforce their belief that there's a conspiracy to cover up the cause of their so-called "disease". I think the undeniable experts will be denied. They have their "disease" and they don't appear to be willing to give it up. I think the best we can hope for is that the cult won't be as attractive to new membership. I don't believe there are going to be very many lawsuits won by the "Morgies". Websites such as lymebusters which provide the breeding ground for such nonsense have disclaimers for their protection, and I don't think they can be held accountable for published opinions. As far as winning a malpractice suit against a doctor for not accommodating the "believer" with a Morgellons diagnosis, it would be easier to win a lawsuit if he did. No reputable doctor is going to diagnose a disease that isn't recognized by the Centers for Disease Control.

Tall Cotton

 
At 10:41 PM, Blogger Tony said...

Hi Everyone

This is my first post on any www site so I am not sure what I can say etc so please be gentle with me.

I think I have this disease (Morgellons) and it looks like this site is bagging this disease as not a real disease . It is real !!!!!!!!!!!!!!!!! (from my perspective)

Why are people poking fun and being mean and horrible about this illness. As far as I am concerned it is real and with me every day.

Where can I get some help about this issue - it could be anything - I am an engineer - I dont know about this stuff and it worries me.

Please HELP
I am from Australia

 
At 3:10 AM, Blogger Tall Cotton said...

Tony,

Hysteria is spreading like wildfire about an all inclusive set of symptoms and the sufferers are self-diagnosing these conditions as "Morgellons Disease". They are experimenting on themselves, their family members, and their pets with dangerous substances. In my opinion, there is no Morgellons Disease and it is obvious that these individuals are experiencing a variety of other skin related problems. The Morgellons cult groups convince new members that they have a mysterious skin disease with no known etiology, and many of these people are ignoring diagnoses they have received from their doctors and are forgoing their prescribed treatment. There are many known skin diseases, and although we will help you if we can, it is best that you go to a doctor and follow his suggestions. Please list your symptoms and any diagnoses you have received and we will help you if we can. We aren't trying to be mean, but we are trying to discourage membership in the dangerous Morgellons Cult groups. Thank you for your questions.

Tall Cotton

 
At 12:10 AM, Blogger abac68 said...

Tall Cotton - How can you help Tony? You need help yourself buddy.

 
At 2:28 AM, Blogger Smileykins said...

abac68, it's not conducive towards helping your state of mental health to be on this blog, or for anyone else who's already convinced they have morgellons disease.

Get someone to read this, and translate it for you....

http://of-morgellons.blogspot.com/

Leave your comments for Tall Cotton and Smileykins on our blog, and not only will you feel better, but we'll be better able to assist you there, and you won't embarrass yourself further, and bother anyone here that's trying to read having to bear witness to your exhibitions.

Thank you. Better days could be just around the corner for you, real soon.

 
At 8:04 PM, Blogger abac68 said...

My mental state is fine thanks. My purpose for being here is to show everyone that this blog site is a pack of crap, and basically to SHUT it down, just try and stop me.

 
At 8:24 PM, Blogger abac68 said...

You Sick, twisted, individual. How dare this blog site allow material to be written about "a little boy named Drew" and the late "Tavis Wilson" and his mom. LEAVE THESE PEOPLE ALONE!

 
At 8:30 PM, Blogger abac68 said...

Where is Margellons? Out on the road?

No No, busy doing internet research, cutting and pasting.

Running around in circles, chasing his tail!!

 
At 9:36 PM, Blogger abac68 said...

Margellons and crew where are you? Oh I know - sniffing around other websites to see what is being said about YOU. We all know who you are!

 
At 10:12 PM, Blogger Margellons said...

abac68, I'm interested in why you are so pr-morgellons. Can you give me any background on your situation?

 
At 11:12 PM, Blogger abac68 said...

What background would you like?

 
At 11:13 PM, Blogger abac68 said...

Oh and just for the record - SUCK ON THIS!!
1111 West 17th Street
Tulsa, Oklahoma 74107-1898
918-582-1972
May 15, 2006
Re: Morgellons Disease
From: Randy S. Wymore, Ph.D., Department of Pharmacology & Physiology
Rhonda Casey, D.O., Department of Pediatrics
Oklahoma State University Center for Health Sciences
Tulsa, Oklahoma
Dear Practitioner,
This letter concerns a patient population that manifests a particular set of symptoms we have encountered
with increasing frequency, and that OSU-CHS is actively researching. The condition has been labeled as
Morgellons Disease and it is unclear if this is a single disease or a multi-faceted syndrome. Until recently, most of
these patients have been grouped as a subset of the diagnosis of Delusions of Parasites (delusional parasitosis;
DOP). After obtaining careful patient histories and thorough physical exam, we have determined that Morgellons
patients have several important distinctions ruling out the diagnosis of DOP.
This population of patients frequently exhibit the following symptoms:
• Distinct and poorly healing skin lesions with unusually thick, membranous scarring upon eventual healing.
• Moderate to extreme pruritis at sites of lesions as well as un-erupted skin.
• Microscopic examination of these lesions will most often reveal the presence of unusual fibers, which may be
black, blue or red. These fibers, which many healthcare providers initially thought to be textile
contaminants, are often present in the deep tissue of biopsies obtained from unbroken skin of individuals
with this condition. Careful examination of these fibers further reveals that they are frequently associated
with hair follicles, and are definitely not textile in origin.
• Most of these patients suffer from a host of neurological symptoms which can vary in severity from mild to
severe. These neurological symptoms include peripheral tingling, paresthesias and varying degrees of motor
involvement which appear to progress.
• Intermittent cognitive and behavioral status changes are often observed and also seem to progress with the
severity of disease. This is often referred to as “brain fog” by the patient as they experience a waxing and
waning of this symptom.
• Laboratory findings in these patients are variable, but often reveal eosinophilia and elevated levels of
Immunoglobin E.
• Other symptoms of varying severity and frequency have been described, and are included in the attached
case definition.
Morgellons patients differ from classical, delusional parasitosis patients in several areas. They do not respond to
antipsychotics, and new lesions continue to appear upon complete cessation of manual excoriation.
Due to the sensation of foreign material in their tissue, that has been described as sharp, stinging and/or splinterlike,
the patient may have discovered the fibers prior to seeking medical care, and may bring them to your office for
examination. Please do not assume that the patient's problem is purely psychological based on this propensity.
Many of these patients may appear skeptical of traditional medical care due to frequent dismissal of their
symptoms in the past. The combination of suffering from a chronic disease with distressful symptoms and no known
cause or cure can cause some patients to appear anxious or agitated.
We encourage you to take the time to carefully interview any patient who may fall into this category, perform
any testing you may deem appropriate, and most importantly treat the patient with compassion and dignity.
Sincerely,
Randy S. Wymore, Ph.D. Rhonda Casey, D.O.
Director of Research, Associate Professor of Pediatrics
Morgellons Research Foundation
Assistant Professor of Pharmacology
Oklahoma State University
Center for Health Sciences
1111 West 17th Steet
Tulsa, Oklahoma 74107-1898
email: morgellons@okstate.edu
Morgellons Information Line: (877) 599-7999
www.healthsciences.okstate.edu/morgellons

 
At 2:10 PM, Blogger Tall Cotton said...

Tony,

I havn't heard back from you. In case you are reading, I will offer a couple of suggestions. Have you been tested for Lyme Disease? If not, I suggest that you consider being tested. I also suggest that you do what you can to keep your kidneys functioning properly so they can eliminate toxins from your body. Do what you can to boost your immune system. If you have a microscope, throw it away. Stay away from cult groups that are spreading hysteria.

Tall Cotton

 
At 10:25 PM, Blogger abac68 said...

1111 West 17th Street
Tulsa, Oklahoma 74107-1898
918-582-1972
May 15, 2006
Re: Morgellons Disease
From: Randy S. Wymore, Ph.D., Department of Pharmacology & Physiology
Rhonda Casey, D.O., Department of Pediatrics
Oklahoma State University Center for Health Sciences
Tulsa, Oklahoma
Dear Practitioner,
This letter concerns a patient population that manifests a particular set of symptoms we have encountered
with increasing frequency, and that OSU-CHS is actively researching. The condition has been labeled as
Morgellons Disease and it is unclear if this is a single disease or a multi-faceted syndrome. Until recently, most of
these patients have been grouped as a subset of the diagnosis of Delusions of Parasites (delusional parasitosis;
DOP). After obtaining careful patient histories and thorough physical exam, we have determined that Morgellons
patients have several important distinctions ruling out the diagnosis of DOP.
This population of patients frequently exhibit the following symptoms:
• Distinct and poorly healing skin lesions with unusually thick, membranous scarring upon eventual healing.
• Moderate to extreme pruritis at sites of lesions as well as un-erupted skin.
• Microscopic examination of these lesions will most often reveal the presence of unusual fibers, which may be
black, blue or red. These fibers, which many healthcare providers initially thought to be textile
contaminants, are often present in the deep tissue of biopsies obtained from unbroken skin of individuals
with this condition. Careful examination of these fibers further reveals that they are frequently associated
with hair follicles, and are definitely not textile in origin.
• Most of these patients suffer from a host of neurological symptoms which can vary in severity from mild to
severe. These neurological symptoms include peripheral tingling, paresthesias and varying degrees of motor
involvement which appear to progress.
• Intermittent cognitive and behavioral status changes are often observed and also seem to progress with the
severity of disease. This is often referred to as “brain fog” by the patient as they experience a waxing and
waning of this symptom.
• Laboratory findings in these patients are variable, but often reveal eosinophilia and elevated levels of
Immunoglobin E.
• Other symptoms of varying severity and frequency have been described, and are included in the attached
case definition.
Continued…
Morgellons patients differ from classical, delusional parasitosis patients in several areas. They do not respond to
antipsychotics, and new lesions continue to appear upon complete cessation of manual excoriation.
Due to the sensation of foreign material in their tissue, that has been described as sharp, stinging and/or splinterlike,
the patient may have discovered the fibers prior to seeking medical care, and may bring them to your office for
examination. Please do not assume that the patient's problem is purely psychological based on this propensity.
Many of these patients may appear skeptical of traditional medical care due to frequent dismissal of their
symptoms in the past. The combination of suffering from a chronic disease with distressful symptoms and no known
cause or cure can cause some patients to appear anxious or agitated.
We encourage you to take the time to carefully interview any patient who may fall into this category, perform
any testing you may deem appropriate, and most importantly treat the patient with compassion and dignity.
Sincerely,
Randy S. Wymore, Ph.D. Rhonda Casey, D.O.
Director of Research, Associate Professor of Pediatrics
Morgellons Research Foundation
Assistant Professor of Pharmacology
Oklahoma State University
Center for Health Sciences
1111 West 17th Steet
Tulsa, Oklahoma 74107-1898
email: morgellons@okstate.edu
Morgellons Information Line: (877) 599-7999
www.healthsciences.okstate.edu/morgellons/index.cfm

 
At 9:26 AM, Blogger johnboy said...

aba68-- Your post about Dr. Wymore's letter and program is very useful to this Blogsite, and was very informational to me for one. I am only one of many commentors but I believe this site is intended to give equal attention to all sides of the issues and can only do that with the contributions of persons like you that post relevant information such as the letter. (Also I believe that such posting is much more helpful and effective to your "side" than shutting down the site or insulting the Blogmeister and fellow commentors who have a different opinion than yours).

 
At 9:26 AM, Blogger QueenBugB said...

Tony,

It's real? OK. Show us evidencec.

 
At 7:12 PM, Blogger Smileykins said...

"What is the CDC doing about Morgellons?" They still recommend the ONLY logical thing to do.

-----Original Message-----
From: CDC Public Inquiry
Sent: Monday, June 19, 2006 3:48 PM
To: CDC Public Inquiry
Subject: Public Inquiry for Morgellons Syndrome

Thank you for your inquiry regarding the condition some refer to as “Morgellons.” CDC is presently bringing together medical experts from several scientific specialties in a working group to help us understand this pattern of illness or syndrome.

Our aim is to gather information on people reporting this condition to see if they share common traits, experiences, or anything that might have put them at risk for these symptoms.

We hope to learn enough about the condition so we can offer useful advice for control or treatment, something that is not possible now because too little is known.

Since CDC has no clinical center or hospital to evaluate or treat patients, we urge persons who believe they are suffering from this condition or who have distressing symptoms to seek evaluation and medical care from their local health care providers.

(A new public inquiry has been received from the CDC Internet for the above referenced subject.This is an automated system. Please do not reply to this message.)

I think the treatments they've been offered might help, if they tried, but none seem willing to go that route.
It actually seems they'd rather live torturous lives until the bitter end.

 

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