The CDC has been talking about looking into “Morgellons” for a while, and I’ve been surprised they never mentioned it on their web site, despite having a phone line set up to take Morgellons related messages. Well, they finally put up a page.
http://www.cdc.gov/unexplaineddermopathy/
It lists the symptoms of Morgellons, and says:
The etiology of this condition is unknown, and the medical community has insufficient information to determine whether persons who identify themselves as having this condition have a common cause for their symptoms or share common risk factors.
This is exactly what I’ve been saying all along. There is no evidence that Morgellons is a distinct disease. There is no evidence (insufficient information) that people who say they have Morgellons have anything in common other than their symptoms. There is no evidence of a single cause.
They also say something else I’ve always been saying:
Persons who believe they may suffer from this condition should contact a healthcare provider for evaluation and medical care.
Morgellons is currently a list of symptoms. A very long list of symptoms that can be caused by a very large number of conditions. Sure, you can “have Morgellons”, but that just means you have some of the symptoms. It does not mean you have the same thing that other Morgellons believers have.
The CDC is saying that, since there is no evidence of a common cause for this set of symptoms called Morgellons, if you have some of these symptoms, then you should go to a healthcare provider, so they can try to determine the actual causes of your symptoms, and fix them, or at least treat your symptoms.
On the title of the CDC page: “Unexplained Dermopathy” – that particular phrase was created just for Morgellons, it produced zero Google hits up until yesterday. “Dermopathy” is a disease of the skin. When a disease is “unexplained”, it is often referred to as being “idiopathic“. A very large number of skin conditions and symptoms are idiopathic. For example, Erythema Multiforme is a disease with many symptoms very similar to Morgellons (lesions, itching, malaise, joint pain and vision problems), yet 50% of the cases of EM are idiopathic. So “Unexplained Dermopathy” is really not a very good name for a distinct disease. On the other hand, it’s a good name for a large collection of unexplained cases of various dermatological symptoms.
Yeah, this is interesting. It basically does say what this website has been saying. I don’t think people think this website wants people to get better. But it does. I have said time and time again that if a scientific study can prove there is morgellons i will believe in it. So far no studies have shown anything, I think they have even done more harm then good, but that is just me. Hopefully the CDC can resolve this and get people to get the proper treatment. I do want people to be well no matter what they have.
911
It surprises me to no end that people use the CDC investigation into “Morgellons” as a staple that “Morgellons” is a distinct medical condition. I’m pleased now that they have given it an ambiguous name and have clarified their stance on the issue — that it is not a distinct medical condition.
I will stand by this, that if the CDC finds “Morgellons” to be a distinct medical condition, it will be a Morgellons victory (rightly so, if the science is good) but if it is found not to be a distinct medical condition, that the CDC will be chalked up to being part of the “medical conspiracy” to “silence Morgellons.” It’s damned if you do, damned if you don’t.
I previously stated that Morgellons is not a medical condition. Let me clarify. Morgellons is a medical condition, but it is nothing new. It has been around for aeons, and for many years it ‘s more severe form has had a name. That name is Ekkboms Syndrome, or Delusions of Parasitosis (DOP). This doesn’t, of course, mean that the patient’s symptoms are “all in their heads”. In many cases, the symptoms are very real, and although they are sometimes grossly misinterpreted, in these more severe cases, the illogical beliefs of the patient are firmly fixed.
A variety of physical and/or mental conditions can lead to DOP, and although a similar set of causes may be found for some patients, this will not apply to the entire group. Morgellons/DOP is a serious mental condition. In severe cases, the Morgellons believer is psychotic. In cases of lesser severity, the patient may respond to counselling without the use of antipsychotic medications, but it’s doubtful that this will work for the entire group.
The CDC has “again” requested that the Morgellons patients work through their local doctors, and since many of these patients have said that they won’t go that particular route, the situation may be at an impasse. Where does that leave the Morgellons patient?
Tall Cotton
Michael –
Quote from CDC: “… insufficient information to determine whether persons who identify themselves as having this condition have a common cause for their symptoms or share common risk factors.”
You said: “This is exactly what I’ve been saying all along. There is no evidence that Morgellons is a distinct disease.”
I say: YOU are saying that there is no evidence that Morgellons is a distinct disease. THE CDC did NOT say that it is not a distinct disease – they said that a common CAUSE has not yet been identified. Very different – you are reading what you would like to believe into their comments. They have NOT at all implied that there are not symptoms that are distinct to this disease. In other words, they say nothing that would negate the fact that Morgies DO have symptoms in common – that means that it IS a “distinct disease”. Hmmm …. do you get it ?
Haven’t you all read the study that found Collembola under the skin of 18 of 20 people who were diagnosed with DOP. The doctors actually knew what Collembola looked like and used the right stain to be able to see it. This is not new – there are numerous cases all over Europe from 5 decades ago showing Collembola under the skin. Would you have bothered them because they did not give it a name (“Morgellons”) ? Would you like to say that all those doctors who found Collembola way back then had photo-shopped their findings ? Really, you people should consider trying to do something new and intersting in your life – they call it “get a life” so that you don’t spend your time obsessively picking on those less fortunate than yourselves. Please consider it – try something new and fun. Become alive again.
Liatris,
A disease requires a common pathogen. Without a distinct cause, there is no distinct disease. Common symptoms mean nothing. Many vastly different medical conditions have similar symptoms.
Moreover, you complain that no one has read the collembola study. We have discussed the collembola study ad nauseum. This blog has discussed the collembola study. If you read it, I will repeat, you will see that no collembola were found. Not a one. Except when the pictures were enhanced by computer imaging software.
On a personal note, has being rude and attempting to be condescending generally worked for you in the past?
Liatris
No, they are the same, look at what we said:
Morgellonwatch:
CDC:
It the same thing: “insufficient information” = “no evidence”, “a common cause for their symptoms” = “a distinct disease”
“Unexplained” doesn’t translate into, “not taught in med school”, or “my doctor is stupid, guilty of malpractice, and lacks professional curiosity”. Knowing that is how patients who believe in “morgellons disease” think, in my opinion, it is criminal for the “morgellons disease doctors and researchers” to prey on them.
Sarahbionedunn (and Michael),
I agree with you when you say that “many vastly different medical conditions have similar symptoms.” But also true is the fact that there are many diseases that do have similar (or the same) symptoms but have different/distinct causes. A few examples are arthritis (caused by various infections, injury or over-use, tumor necrosis factor, genetics), cancer (caused by viruses, toxin exposure,radiation), and dermatitis (caused by allergies and infectious microorganisms {viral, bacterial, fungal, parasitic}).
So you have read “the” collembola study. Are you sure that it was not made more clear in a way that was honest ?
You did not respond to my stating that there are numerous studies finding that collembola was infesting people’s skin actually dating back sixty plus years and the reports came from all around the world. Australia(1945), Alaska(1954), California(1954), Sweden(1955), Texas(1962), Arizona(1995), Belgium(1996), Romania(1998). The above are examples that are delineated in English in the link below. There are about another half dozen reports there in different languages.
http://collembolareferences.blogspot.com/
Just because dermatologists and infectious disease specialists are not finding anything when they do actually bother to look (with at least a skin scraping), certainly does not mean nothing is there. By and large, they do not know what to look for. It is an unresearched zoo out there. And they should not pretend to think otherwise.
There is a highly respected parasitologist named Daniel Brooks(PhD) at the University of Toronto who is responsible for collecting and identifying/classifying over 5,000 different types of parasites and more than 2/3rds of these parasites are new to science. How ? Why ? Because he is really looking and he is successful because, even though he does not know what to look for or what he will find, he is diligent. He has to try all sorts of different stains to see which parasites will become visible/viewable. He would have to experiment with different combinations of magnification and lighting of the microscope. He looks for parasites on vertebrates – a category to which we, as humans, belong.
If you go to a typical microbiology lab and tell them that you have had an infectious microbe as well known as an enterococcal strep and it was found in your throat in the past, they will tell you that it will never be found in a throat sample. I had this happen. I told them to please set up to grow and, thus, identify it. Well, they did not grow it and another lab did. If you do not provide the environment needed, whether it be the right growth media on a culture plate or the right temperature for growing the particular “bug”, you will not grow it and therefore, it will not exist. The same is true of not using the right stains and microscopic lighting and magnification. If a typical dermatologist were to take a skin scraping from one of the vertebrates that Dr. Daniel Brooks had identified several skin parasites from, how many do you think the dermatologist would find ? It is outlandish for doctors to assume that they know all there is about diagnosing parasites -so much so that they think they can honestly rule out “PARASITES” (and yes, it is BIG !). On the basis of this piddly knowledge, they diagnose DOP – so readily ? It is totally mind-boggling to me. This is a completely unacceptable disservice to the suffering patient.
Of course, not every single person who thinks they have parasites under their skin do. But what about those who do and are not even remotely being assessed properly ? The time is way past due that the CDC, NIH, and medical doctors accept the fact that they need to seriously investigate parasitology and begin to learn what all is out there. They will have to experiment with different stains, etc and keep an unbiased, objective mind in order to see all that they have not seen before because they did not know what to look for and how to even begin to find it in a skin sample. Imagine how much more complex this becomes (and needing of detailed knowledge) when a doctor takes a skin scraping and ends up with the hind leg of something .. or might it be a tail of … of ….. something.
The reason that the work has not been done so far (except by Dr. Brooks and a few others) is obvious to me. The authorities (CDC, Medical Doctors, etc) do not like acknowledging that they know virtually nothing about a topic THEIR TOPIC – especially if it is devastating their patients who they are supposed to be keeping well (ie, they are failing). So there is the ego part – not surprising, it is human nature. The other major reason is that to figure this all out will be A LOT of work ! And they KNOW that. They would rather be on the golf course, right ? Sure, there are a few exceptions. So, you then COMBINE the EGO thing with the LAZINESS – ACK !! They do not want to touch it ! To first say, “We have not known a thing about diagnosing parasites – oops, sorry all you patients.” And then to start to arduously work on it (which further confirms that they have not know enough). It is apparently much easier to be immoral and I guess they figure if they don’t lose any sleep over it, and they are getting away with it because all their colleagues are also pretending to be asleep – they might as well continue to keep up the charade. It is easier than being truthful. It’s sad.
Below is a link to one of many good pieces on Dr. Daniel Brooks.
http://www.scienceagogo.com/news/20050122232243data_trunc_sys.shtml
Hi, Liatris. That old collembola study has been worn out, and talked to death, for years. I’d even posted a topic that included how it came about, asking for corrections, from anyone, if I’d stated anything wrong. Nobody corrected me, but, rather, I recently saw that someone who thinks they have “morgellons disease” misinterpreted it as something favorable that had been posted about it.
Remember saying on lymebusters that you have liver damage from taking so many antibiotics for lyme disease? What doctor did that to you? Also, I can’t post anything there, so could you supply a link to whatever scabies forum it is that you ran TC and me off of. Thank you.
I’m sorry, you had mentioned tylenol, too. How badly is your liver damaged? I know of a lady who had to get a liver transplant, because she had taken tylenol for headaches, daily, for years, without knowing the hazards. I am very sorry that happened to you, and hope for the best.
Liatris says: I agree…there are many diseases that do have similar (or the same) symptoms but have different/distinct causes.
Exactly the point. “Morgellons” seems no different than any conditions that you listed. How does this support your claim that Morgellons is a distinct medical condition? I’m confused.
Liatris says: So you have read “the” collembola study. Are you sure that it was not made more clear in a way that was honest?
Yes, I have read it, ad nauseum. The collembola study says point-blank that no collembola were found.
Liatris says: You did not respond to my stating that there are numerous studies finding that collembola was infesting people’s skin….
Collembola may alight someone’s skin, may take a test bite trying to find a bit of yummy plant, but they do not infest one’s skin as, say, a bot fly inhabits human skin. They do not enage in the insect behaviors described by “Morgellons” sufferers regarding their skin.
Liatris says: Just because dermatologists and infectious disease specialists are not finding anything… certainly does not mean nothing is there.
Not finding something usually concludes that nothing is there. I’ll grant you, there are rare, extreme cases, but after so many “Morgellons” sufferers skin samples have been inspected, someone must have found just one thing.
Although the causes of Morgellons are many, and varied, doctors do know about delusional disorders, how to diagnose and treat them. It’s the patients responsibility to respond by following the doctor’s treatment protocol, or if in doubt, to get a second opinion. Many Morgellons patients have been diagnosed multiple times, but have refused to accept the diagnosis.
It’s not the purpose of this blog to convince any Morgie that they are delusional, or to talk them out of their convictions. One of the characteristics of Delusional Parasitosis is that the beliefs of the delusional patient are firmly fixed. The purpose of this blog is to assure undecided patients that there is no evidence that Morgellons is a distinct disease, and that they should seek the advice of a good doctor.
That doesn’t mean that they should shop around for a doctor that believes that Morgellons is a distinct disease. Some doctors are taking that position only to exploit their patients. In my opinion, researchers are also using the Morgellons issue in an attempt to obtain fraudulant research grants.
There is no such thing as Morgellons Disease, but the term is rapidly becoming synonymous with a real health syndrome. That syndrome is Delusional Parasitosis. Fortunately, the condition is treatable, if the patient is willing to follow their doctor’s advice. That may include taking antipsychotic medications because the worse cases are psychoses.
If the patient’s false beliefs aren’t too firmly fixed, he may find help through counseling without the use of such medications. But the patient must be willing, or become willing, to accept the truth. Please don’t be led astray by the many “so-called” Morgellons support forums.
Tall Cotton
Collembola study:
http://delusion.ucdavis.edu/others.html
National Institute of Health’s Office of Rare Disease Classifies Morgellons as a Duplication of the “1q42 11 q42 12” Gene.
STOP your funded harassment upon people suffering with this affliction.
Your massive amounts of obvious disinformation and contrived BS will stand as hearkening evidence of a massive, funded, campaign of disinformation and public manipulation to further the suffering of thousands in mental and emotional anguish.
You’re going down.
HARD.
Prepare to defend yourselves against a massive onslaught of class-action suits in the very near future.
-M
This is a database problem on a version of the database not intended for public viewing. rarediseasesinfo.aspensys.com is a “staging area” of the ORD extranet for putting up test versions of the database. All the pages there have the Morgellons hotline message. So it’s just broken. The actual 1q42 page is here:
http://rarediseases.info.nih.gov/asp/diseases/diseaseinfo.asp?ID=1945
Note the url ends in nih.gov, not aspensys.com
On the aspensys site, all the pages have the Morgellons message:
Wheat Hypersensitivity
Having more than five fingers
Looking at that a bit more, it seems the ORD database of “Rare Diseases Terms” is just very simple, comprising simply of the Disease name and the Synonyms.
At some point, someone wanted to add the Morgellons contact info to the Morgellons page, but since the pages are generated by a simple asp script (diseaseinfo.asp), the only way to do this was to modify the script (basically a very specific patch), which should have had some code like
IF ID==9805 THEN add the morgellons message
But for some reason the version of the script that is on the aspensys.com site does not have the test (or it’s badly coded, so is always true on aspensys), and so it adds it to every page. This has probably been like this for months, and I’m surprised nobody noticed it. It’s also a very messy way of doing things.
You can view the raw database as an excel spreadsheet here:
http://rarediseasesinfo.aspensys.com/DiseaseTermExcel/DiseaseTermsExcel.asp
And the extranent site is here, which confims it is actually a test site or staging area.
http://rarediseasesinfo.aspensys.com/
It’s also at this URL, as bsp-lmit.com seems to forward to aspensys.com:
http://rarediseasesinfo.bps-lmit.com/asp/diseases/diseaseinfo.asp?ID=3342
That’s some weak IT people. Test sites should not be Google indexed, now if someone searches for Morgellons and any rare disease they get a result on the test page, which will lend itself to no end of confusion.
Example:
http://www.google.com/search?q=morgellons+streblodactyly
streblodactyly is a crooked finger.
Prevenge,
You just got owned. Ouch.
Mercy sakes, and try settling down, Prevenge. Also, ironically, in a very roundabout way, the link you provided might be assistive to some people.
Where it says, “Information about Chromosome 1, q42 11 q42 12 duplication is available from”, and lists The NLM Gateway and PubMed, click onto the one for PubMed.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=PureSearch&db=PubMed&term=%28Trisomy%5BTitle%5D%20AND%201q42%5BTitle%5D%29
(100 summaries versus 2. Read from them, and try to get well.)
Looks like Aspen Systems fixed the staging area version, the pages will still show up in Google for a while, but if you click on the result, it no longer mentions Morgellons on every page.
http://www.google.com/search?q=morgellons+streblodactyly
http://www.ktvu.com/health/13810037/detail.html
It is time Morgellonswatch to admit you were wrong. Will you have the guts to do it or will you be the cowards that you are collecting web e-mails and selling addresses to drug pushing companies or are you finally gonna come clean now that your fight to keep this quiet is at is end?
“CDC Protest March” Friday August 17’th
Yes, “this Friday” there is scheduled on the CDC Sidewalk in Atlanta,
Georgia a “PROTEST MARCH” and ALL are Invited who can attend.
Free “No DOP T-Shirts” will be given to the first 200 to show up. The
Media “WILL BE THERE” and it’s possible that a CDC spokesperson is
being forced to become compliant to “Interview” and to address
the “Morgellons Attendees” who show.
This is the beginning of forcing the CDC to
#1) Address the Issue which they’ve ignored.
#2) Open the doors to a continuous dialogue with CDC
If you know anybody who can attend, or is financially able to attend,
and anybody who lives in the area, please forward this information on.
Richy
I AM a Medical Doctor and I AM suffering from many of the clinical signs described within what is currently reffered to as ” Morgellons” including the fibers. No question…………………this is a real medical condition who’s eitiology must be found. Why the predjudice I am unsure. Innocent untill proven guilty right. The degree of zealous rejection within this blog likely resembles ” The Earth is Flat” debates. Let us learn from history. Closed minds cannot discover. I honestly do not understand how/why an educated mind could be so narrow.
Drjaz, I am sorry that you are suffering this thing that people call “Morgellons”. I also have alot of bizzar symptoms. Are you a doctor in the U.S.? Have you, with your educated mind(the only one I have witnessed on this blog)found any type of productive treatment? I have the lesions, not as bad this time, and my vision is getting pretty bad. I was told that there is an antibiotic eyedrop that helps, but can’t get it without a prescription. I use sulfur soap, and an antifungal spray, they are at least slowing it down. Thanks, Niecy
Dr. Jay Traver WAS a real medical doctor who suffered from all of these symptoms. She even wrote and presented a paper. Her sisters shared her condition.
What do I do because I have this?
Work with your doctor to find treatments that best address your specific symptoms. You are an individual, and deserve individual treatment.