This should be interesting. Paula Zahn is doing a story on Morgellons at 5PM Pacific, 8PM Eastern today (Thursday June 22).
Regardless of the tone of the piece, this will cause a huge blip in the number of “reported” cases, as viewers go to morgellons.org, and fill in the form. They list 4131 right now, which jumped up from around 2000 a few months ago with the local TV coverage.
Hopefully CNN will have done considerably more homework than the local news.
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.
The following Q&A is aimed at addressing some of the misconceptions regarding Morgellons that have been propagated in various media articles.
(Note: This will be a work in progress – please email me suggestions and corrections at Morgellonswatch@gmail.com)
Q) What is Morgellons Disease?
A) Morgellons is an proposed disease, unrecognized by doctors, promoted and self-diagnosed via the internet. People claiming to have Morgellons have widely differing symptoms, the most common of which is they feel they have been misdiagnosed by their doctors. Supporters claim the most notable feature is fibers emerging from the skin, yet everyone has fibers on their skin.
Q) Is Morgellons a real disease?
A) Not by conventional medical standards. The offered case definition is very long, and very vague. It fits a very large number of existing diseases, and simply suggest co-morbidity of a variety of conditions such as eczema, chronic fatigue and anxiety disorders. The “evidence” for Morgellons is entirely anecdotal.
Q) What is the History of Morgellons?
A) Morgellons was first proposed in 2002 by Mary Leitao, to explain her 3-year old son’s eczema. Leitao looked at her son’s skin under a microscope and found fibers on it, and decided she had discovered a new disease characterized by fibers emerging from lesions, and started a foundation. Her son’s eczema cleared up naturally. His symptoms did not include those of the more recent claims of Morgellons. The list of symptoms has rapidly expanded as more people registered. Leitao encouraged people to seek out fibers in their lesions. The idea of Morgellons was spread over the internet.
Q) Are the most cases in California, Texas and Florida?
A) Yes, because that’s where the most people are, those states have the highest populations. Morgellons is a self-diagnosed disease. People “register” over the internet by filling out a simple form on Morgellons.org.
Q) Who is Ginger Savely?
A) Ginger Savely is a nurse practitioner who was unable to find a doctor in Texas to supervise her practice, due to her unorthodox and possibly dangerous treatment of Lyme disease patients. She gives similar treatments to self-diagnosed Morgellons suffers. She is a member of the Morgellons Research Foundation, and co-authored an article on it with Leitao. She is active in the Media campaign, and is seeking new patients. She makes a living from selling her unorthodox treatments.
Q) Have researchers determined the fibers are not environmental?
A) No. Randy Wymore is the director of Research at Leitao’s MRF. He works on a volunteer basis using the facilities of OSU. He has been examining fibers sent (often anonymously) to him. Many fibers he would discard as environmental, but there were a few he could not identify. Not being able to identify a fiber is not the same as proving it is not environmental. Fibers go unidentified all the time in forensic cases. To prove it was not environmental, you would need to prove it was generated inside the body. This has not been done.
Q) Do most doctors dismiss Morgellons Sufferers as having Delusions of Parasitosis?
A) No. There are a wide range of things going on here. Doctors understand that people might mistakenly think fibers found on their skin are connected to their disease, without the patient being delusional. If a patient has lesions or itching, then there are a vast range of possible causes for this, and doctors would attempt to diagnose and treat them. Delusions would be diagnosed if the patient claims to see things that are not there. There are some people who are clearly delusional and who are highly resistant to any hint of a psychiatric diagnosis. These people are likely to latch onto anything they feel explains their symptoms.
Q) Do people “sweat black tar“?
A) No. Again this is based on one statement, and was then picked up by the media. This time Savely was quoted as saying: “These people will have like beads of sweat but it’s black and tarry“. She was probably referring to what other people call “black specks” (dried blood, necrotic tissue, or blackheads). The imagery was just to vivid for the press to pass up.
Q) Does Morgellons cause muscle twitching?
A) No. It’s not a real disease, but the list of supposed symptoms was extended to include “uncontrollable muscle twitching” after a report (May 2006) that former Oakland A’s pitcher Billy Koch has Morgellons. The extensive Morgellons Research Foundation’s “Case Definition“, written (Feb 14 2006) a few months before the Koch report, does not mention muscle twitching even as a secondary symptom.
Q) Is it odd that some fiber analysis shows some fibers to be made of cellulose, a molecule generally found in plants?
A) No, far from it. Cellulose is what the majority of environmental fibers are made from. Paper, tissues, cotton, q-tips, linen, ramie, rayon, tencel and lyocell are all made from nearly pure cellulose.
Q) Is it true that “Dermatologists claimed the filaments were all delusions, although none had studied them“?
A) No. Dermatologists often look at samples that patients bring in, in order to eliminate the possibility of parasitic infestation such as follicle mites, scabies or lice. Filaments themselves are not delusions, they are physical objects.
Q) Where do the Morgellons sufferers on TV come from, if this is not real?
A) From the internet. The TV report have been orchestrated by Ken Cowles, the MRF director of media relations. He seeks out people in the local area who have registered with the MRF, and sets up interviews, and supplies photographs and video. The people featured are often active in promoting Morgellons on internet message boards. For example, the Alabama WKRG report featured the family of Leigh Ann Cofield, very active on the Lymebusters forum
Ginger Savely participated in a “live chat” today.
I’ll quote a few bits:
Ginger Savely: There is no one treatment that works for all. I tell my patients
that they are all “lab rats” because this is all experimentation. I give a
combination of antibiotics (sulfa drugs, Biaxin, Cipro, Doxy are some),
antifungals (fluconazole) and antiparasitics (like ebendazole, Stromectol or
Prazequantil).
Lab rats huh, you are experimenting on your patients (see later)?
Question from Michael in Los Angeles, CA: Nurse Savely, it is often mentioned
that the highest number of cases of Morgellons are in Texas, California and
Florida. Is it not the case that these three states simply have the highest
populations of all the 50 states, and that Morgellons is actually evenly spread
over the country?Ginger Savely: Good question. However, there is a
higher PERCENTAGE of the population of those 3 states that are reported cases.
So it is not just simply the quantity from each state, but also the higher
percentage of the total population from each state.
Not true. According to the USP database, Arizona, Georgia, Missouri, New Mexico, Oklahoma and Vermont all have a much higher percentage than California. Still, the USP sample size is small, so I’d like to see some figures from the MRF. Remember however, it’s a self reported survey, not very accurate either way.
Ginger Savely: I no longer have a practice in Texas, unfortunately. The heat
from the Texas Medical Board was too much for me here. So I have transferred my
practice to San Francisco, CA. California is a more liberal, open-minded state!
Patients who want to see me in San Francisco need to send an email to
lymesf@gmail.com asking for a new patient packet. If you have a sympathetic
local doctor you can ask him/her to contact me directly for suggestions
So, kicked out of Texas, and trying to drum up business in SF. These TV spots make for great infomercials eh?
Ginger Savely: I’m not sure but I do know that in general the medical
establishment tends to be very conservative and cautious. There is a big move in
medicine towards what is known as “evidenced based medicine”. In other words,
unless there is hard-core science behind something doctors won’t touch it
What, “evidence based medicine” is wrong? Hard-core science is bad? If you can’t figure out what is wrong with someone, then just dose them with massive amounts of antibiotics, antifungals and anti-parasitic drugs.
Ginger Savely: Yes, Rife machines are sometimes used and in approximately 30
percent of cases it helps.
Rife machines!!? Are you kidding? Better watch out for the FDA
Ginger Savely: It would be unethical to do a double blind placebo controlled
study at this stage, with so many people suffering. We just try each treatment
on each patient until we find something that works for THEM. What works for one,
doesn’t seem to work for another. This is puzzling. But right now, it is all
about getting these people better and ending or at least lightening their
extreme suffering.
Ah yes, unethical to do any kind of study. What if placebo were the most effective treatment? Are you perhaps even keeping records? Any statistics at all?
I find it amazing that the media swallows the line that cases are centered in Texas, California and Florida.Some of the more fringe “media” outlets on the web are taking this, and suggesting it must be a disease bought over the border by illegal immigrants.
Let’s look at some infographics. Firstly from Morgellons.org, we have a little map that shows the states with the most cases:
See, it’s Texas, Florida and California!
Now, here’s a more detailed map from “Unidentified Skin Parasite (a.k.a. “Morgellons Disease”) Database“. Darker states have more cases.
Finally, here’s one from Wikipedia:
Notice the amazingly high degree of correlation between the maps! This proves without a doubt that cases are highest in CA, TX and FL!!
But wait, what’s Wikipedia doing supporting this nonsense?
Actually, the Wikipedia map in not a map of Morgellons incidence. It’s a map of population.
That’s right folk, there are more cases in CA, TX and FL, because MORE PEOPLE LIVE THERE!
The only reason those states have the most cases, is that they have the most people.
You might as well go around saying that the highest incidence of people is found in California, since it is, and it’s just as meaningful.
And CBS2 news in Los Angeles gets people all scared, saying that Los Angeles has the highest number of cases of Morgellons in the country. Could this possibly be related to the fact that (excepting New York) Los Angeles has MORE PEOPLE than any other city in the US?
Recently (April 2006) a member of the Morgellons Community, a young man, died of a drug overdose. He was one of several patients of Ginger Savely, a Texas Nurse Practitioner who offers diagnoses of Morgellons to those who seek it.
This young man was very intelligent and well-spoken. He was also a self-admitted drug abuser, taking a wide range of drugs including heroin. He was very open about this, and discussed his extensive drug use, and his related health problems, at great length on a large number of internet posts.
After he was “diagnosed” in early 2005, he apparently became increasing depressed and paranoid, believing that he was the subject of biological and electronic harassment.
His passing is very sad, but it is made sadder in that the Morgellons Community will memorialize him as a victim of Morgellons. I think that “Morgellons” probably did contribute a little to his fate, but not in the way that Savely and other would suggest.
It is very, very, sad.
Karla McLaren was a new-age healer and teacher. An author with several books like “Emotional Genius” and “Becoming an Empath”. A self described “full-fledged member of the New Age culture for over thirty years”.
Then, a few years ago, she became a skeptic, and she wrote this wonderful article that explains in part why it took so long.
http://www.csicop.org/si/show/bridging_the_chasm_between_two_cultures
In a very similar manner we have two cultures in the area of Morgellons. One of rational skepticism, and one of alternative beliefs. What these two culture have is a failure to communicate. Karla gives a heartfelt request that I’m sure many Morgellons sufferers would agree with:
“I would ask you to respect our humanity, and approach us not as if you are reformers or redeemers. I would ask you to approach us as fellow humans who share your concern and interest in the welfare of others. I would ask you to be as culturally intelligent as you are scientifically intelligent, and to work to understand our culture as clearly as you understand the techniques, ideas, and modalities that have sprung from it. We are a people, not a problem“
Mr Schwartz, a recently defrocked doctor, is one of the supporters of Morgellons sufferers.
http://www.freenewmexican.com/news/36346.html
Schwartz said he talked to a man who said he used to work with the CIA, and the man told the doctor about a government-developed bacteria that got out of control in France. That theory would substantiate claims that Morgellons has come from bottled water from France, Schwartz said. Schwartz said he is not sure what to think of the theory that the disease comes from imported bottled water because some of his patients don’t drink bottled water
One wonders then, why there would not be more Morgellons in Europe?
Schwartz is either a quack, exploiting people’s fears for money, or he simply shares and reinforces the delusions of those he “treats”. Good job he can no longer pescribe medicine or peddle narcotics.
While looking into the CDC’s actual interest in Morgellons, I came across this report from the Duval County Health Department:
http://cctvimedia.clearchannel.com/wtev/morg2.doc
The Duval County Health Department Epidemiology Program began to receive phone calls from the public in February 2005 regarding a skin condition called Morgellons Disease recently highlighted in local news reports. DCHD initiated an investigation into the epidemiology of Morgellons Disease in Duval County. Each reported case was documented and investigated, and the feasibility of designing an epidemiologic study was considered.
[…]
The following chart represents all of these inquiries which include telephone calls, emails, and written letters. Calls began in February 2005 and DCHD continues to receive sporadic calls. Although there appears to be a cluster of reports around March 3,2005, this is attributed to the airing of Fox News’ coverage of the illness and is not a true cluster of disease.
[…]
DCHD Epidemiology consulted a pediatric dermatologist within the health department for his professional opinion. It was concluded that this is a psychological condition that has been mentioned in literature for hundreds of years, and further dermatological research is not practical. DCHD then consulted with the Centers for Disease Control and Prevention in Atlanta, GA. The reply was the same in that there was no interest to support research into Morgellons disease
I wonder if this is how Morgellons.org somehow got the idea that there was a “team” assigned to investigate Morgellons. Here’s another version of the report, as a FAQ:
http://cctvimedia.clearchannel.com/wtev/morg3.doc
Due to high media interest the following personnel were involve with initial research:
Dr. Zaheer, C. Bailey-GOC II, R. Kay-EIS, and R. Alcantara-RN; to this date continued research personnel include: Dr. Zaheer, S. Jones-GOC II, S. Traynor-EIS and R. Alcantara-RN.
The team investigated, and deduced the normal skin conditions, sprinkled with DOP.
[UPDATE: 5/26/2006] After similar reports in May, the Los Angeles County Department of Health Services released a brief statement:
No credible medical or public health association has verified the existence or diagnosis of “Morgellons Disease.” The current description of the disease is vague and covers many conditions. Until there is a credible, national standard for the diagnosis of this condition, there is no basis for making it a reportable disease. Concerned individuals should have careful clinical and laboratory investigation of their serious skin irritations, but at this time there is no reason for individuals to panic over unsubstantiated reports of this disease.
The deeper Morgellonites are pushing this story
(http://www.reutershealth.com/archive/2006/04/21/eline/links/20060421elin004.html)
The implication being that many doctors and psychiatrist are in league with the pharmacutical industry – and have a vested interest in diagnosing things as psyciatric disorders so that Big Pharma can sell more psychopharmalogical drugs.
This is about as likely as the clothing manufacturers being in cahoots with the dry-cleaning cartels by labeling their garments “dry-clean only”, when you know perfectly well they’ll do just fine in the laundry.
The question to ask (and I’m borrowing here, Seinfelt I believe) is “how would that even work?”
When your doctor suggests perhaps a component of your disorder is mental, then does he get some kind of kickback from Big P? How much might that be? How does that money get to him?
Doctors get paid a lot already. What portion of their income comes from these psych-referral kickbacks?
How does the accounting work? Follow the money. In all the decades of auditing of various health industries – has there been one shred of evidence of such a kickback scheme?
It must be more subtle – the Doctors get paid by insurance companies that get paid by the consumers, who get high premiums because the price of psych drugs is so high. Doctors keep over-prescribing them, so everyone makes money.
Consider though, how would that even work? The individual doctor will get paid regardless. If he writes needless prescriptions, he does not get paid more. He’s taking a risk of getting caught. So it’s better for the individual doctor to get paid as normal, and let others take the risk.
So there HAS to be a kickback scheme involved.
But nobody has ever produced one shred of evidence of any financial irregularities.
And don’t point at that Reuters story above – read it first, it explains why they have “links”. Their links are most tenuous, and quite innocent looking. Heck, I have links just because I own share in SPY, which includes some pharma companies. Most of you dear readers, if you have a 401K, or other retirement account, will have some shares in a mutual fund that also invest in Pharma. Are you involved?
How would that even work?
