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.

29 Responses to “What is the CDC doing about Morgellons?”

  1. Yes, Michael, 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.

  2. This post has been removed by the author.

  3. 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.

  4. 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?

  5. 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

  6. 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

  7. 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

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

  9. 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.

  10. 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.

  11. 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!

  12. Where is Michael? Out on the road?

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

    Running around in circles, chasing his tail!!

  13. Michael 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!

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

  15. What background would you like?

  16. 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
    http://www.healthsciences.okstate.edu/morgellons

  17. 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

  18. 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).

  19. Tony,

    It’s real? OK. Show us evidencec.

  20. “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.–>

  21. Wow!

    the morgies are coming to shut down this site

    I just found it, it’s not fair!

  22. Well, we’re outnumbered, paps. Hehe.

  23. I think true morgellons is caused by the fibers released on our population by chemtrails. The fibers are magnetized from the ground by HAARP and others in an effort to control the weather. Some have reported that these fibers move on their own. Perhaps they move because of static electricity or an individual’s magnetic field. But how do chemtrail fibers penetrate the skin?

  24. I JUST RECENTLY FOUND THIS SITE, AFTER AN ARTICLE CAME OUT IN OUR LOCAL NEWSPAPER ABOUT THIS DISEASE. THIS IS A HORROR STORY.MY HEART GOES OUT TO ALL WHO HAVE THIS

  25. It is not what it’s being portrayed as, Brenda.

  26. hello,
    the thrip photos are mine. i did not only get them OFF the skin,i actually saw them emerge FROM (OUT OF) the skin, and i continue to live with the truth of this bizarre situation, and you continue to call me a liar.
    go figure, YOU ARE THE FOOL, for misleading people who are crying for help, but Misery Michael you ARE actually getting the word OUT….. your writing talents could have easily been used for good? (WHAT YOU SAY? NO PAY?)
    so i say thank you for increasing Morgellons awareness, this IS a novel parasite, that with a little work could be found out and eradicated!! E-MAIL ME, WE’LL MEET, I’LL SHOW YOU HOW TO INFECT SOMEONE! better yet, i’ll infect YOU… on purpose, then I’ll see you change your tune, then you’ll change sides. we could use you to advocate, but for now, you have a big uninformed judgemental voice that makes you look like the fool to the people who know the truth.

  27. Tallcotton , you should have your facts before you make statements as such. There are now doctors and nurses with this illness. These people are not cult members. I have this illness. It is caused by a parasite under the skin. Found it, removed them, has been told to the CDC for over 5 years. They lied and hid it. What you should be afraid of is nothing kills it and it is contagious. It has hit every state in the US. It eats you slowly. No lie. That is what DR.Wymore is working on. This is a pathogen worse than HIV. So you should be aware and scared! As the CDC has let this spread all this time and told no one. They said it was lymes. Ha I have fought this for 4 years and am hardly ever on forums except to keep up on the progress. It’s not made up or in our heads. You had better hope you don’t get it. As no one knows how you get it or how it’s being spread. It’s everywhere. Since am 24 years USAF retired and know bio weapons, this isn’t in anyone’s head. It’s real and it’s a nightmare. The CDC just let it go on and on. How do you like that one? Plus half of illnesses now, might be this. It can eat you bones,muscles,and your brain. So get your facts. Hundreds of people have been contacted on this illness. Even Geogia has set up a task force trying to get the CDC to do something. Before everyone has it. Now how’s that?

  28. Misty, if you can find and remove the parasites, why can’t you show them to Doctor Wymore?

    How can it be worse than HIV? In what way?

    I’m sorry you are ill. But there might be other causes for your illness than some novel pathogen.

  29. Hello -
    This is my first post anywhere on the topic of Morgellons. I’ve had these bumpy patches developing on my lower legs, then up the thighs, as well as the forearms, over the past 2-3 years.
    Initially, I thought it was my aging skin – perhaps damaged by too much exposure to the sun in the mid-80s. (I’m the fair-skinned type.) Then about 6 months ago, my wife started complaining of being “bitten” on her usually-perfect skin. We figured it might be scabies, though my doctor had diagnosed me about a year earlier with “eczema”. So to respond to the scabies, I got a prescription for the least intrusive response – sulfur cream. We applied this sulfur cream for 4 nights in a row to all members of the family from the jaw-line down to our toes. Then another application about a week after the 4-night application. Symptoms seemed to ease – at least the biting disappeared… for a couple of weeks.

    Now — flashback to summer of 2006. I was working in Eastern Europe as a consultant, and we got to spend a week in Crimea, Ukraine on the Black Sea. After about 5 days of swimming in the strong brine of the Black Sea, we decided to visit our host’s sanatorium-resort (“kurort” in Russian), and we saw the rich black sulphurous muds that people were applying to their bodies. My hosts, my family and I then all jumped into the black mud, covering everything save our eyeballs with the black mud. We stood there in the hot afternoon sunshine, absorbing the sun’s heat into the black muck on our skin – probably 20 minute we stood there. Then we washed it all off in the salty brine of the lagoon.
    Result? Honest to God – my skin was like a baby’s bottom all over for at least 3 weeks after that. No pimples, eruptions, or even hint of Morgellons-type skin surface symptoms. The dangerous part about our escapade in the Black Sea muds was that we most likely overdid it, as my wife couldn’t sleep all night, and a day or two later I seemed to feel a stress in my heart area. (In fact, a 54-year-old German man died from an overstay in the black muds just a week before our arrival in Crimea.) Ukrainians who make use of the black sea muds generally do so under doctor supervision, who prescribes the specific body areas that are to be covered, and for how long. We walked in like a bunch of wild pigs, and simply revelled in covering ourselves in black mud.
    I suspect that my re-infection with pimple-like cysts (aka Morgellons) started up again because my clothing was infested with the “textile-like” particles, which I didn’t properly segregate from my life.

    My wife just discovered Morgellons on the internet yesterday, but the symptoms appear to correspond for me. I’ve been reading some of the herbal remedies that are out there to mitigate the effects. However, my goal is to get my sorry ass back to the mud flats of either the Black Sea or the Dead Sea this summer, and deliberately set about following a schedule of mud applications – maybe 10 minutes of mud on every other day for a total of about 5 applications over 10 days.

    Reading the blogs, it seems that there have been some 12 cases of people who’ve overcome Morgellons symptoms by using alfalfa baths. It’s possible… but I know what worked for me, and I’m leaning towards the muds.

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