April 17, 2006
From: Randy S. Wymore This is an open letter to all interested parties regarding Morgellons Disease and my role in Morgellons Disease research. This may come off as a long and rambling letter, but a number of emails to me, as well as comments about me, suggest that I need to cover several issuess.
I was sent a copy of statements and questions that a poster by the name of Sabrina made on a public forum. Other email writers asked individual questions or made comments in bits and pieces, but Sabrina pretty much covered all of the topics, so I will reply to her statements and questions directly.
First of all, Sabrina, thank you for pointing out to me some of the issues that I had not even thought about conveying. You asked questions that I should have answered, but in some cases never even thought of in the first place. I am pasting in some of your comments and questions and then will add my thoughts after each one.
"Since fairly poor labs and even college teaching labs can sequence large stretches of DNA, there should be no reason that the maker of the video cannot do so. Such work is inexpensive and easy. It is also CONVINCING and NOT subject to interpretation."
'This tells me that MRF should have "no reason" to not already have this information as well, right? Dr Wymore says it "is inexpensive and EASY." I do not really know, perhaps I missed this release of information. Does anyone else know? '
No, you did not miss the release of this information. I should have made clearer what I meant. I do not have a candidate organism in hand that I can use to extract DNA to amplify and sequence. The red & blue fibers, black specks and white granules are associated with the disease, but none of those objects are 'it', the actual organism. The maker of the video claims to have 'it' in hand. Once a researcher has the suspected organism, then one can do the molecular biology. This is actually the key to this whole mystery. What is the causative organism? This is where my research and the video maker's are quite different. He claims to have isolated the causative agent. I have not done so. Or, if I have, I have not recognized it as such yet. Also, several people have questioned my 'sequencing of DNA for less than $20.00' comment. Well, here is a commercial service at: http://www.nwdna.com/sequencingpricing.htm . The type of sequencing that would be performed is actually listed at $8.50 per sample. I overestimated the cost because there is also 1-4 day mailing of the samples to work into the total price. Also, once again I did not really make my comments very clearly. I did not mean that the entire organism's genome of DNA could be sequenced for that small price. But, for that price one can get several hundred, to a thousand nucleotides of DNA sequenced. Definitely enough sequence to compare to the global databases to get a handle on an organism. The entire genome would take big bucks and months to years to finish, depending on the size of the organism's genome.
'"A fragment of sequence can be submitted to the global database search engines and will be either human, or mouse or rat or cockroach or whatever species it came from."
So, what has the Morgellons fragment been determined to be??? It should be pretty easy and inexpensive to get this information, right? Perhaps I missed this information as well. ' I really do hope that it will be easy and inexpensive to get this information once a candidate Morgellons organism is identified. '
"There was a time, well over a decade-and-a-half ago, when DNA sequencing was difficult, time-consuming and expensive. Now it is cheap and accurate. There is no reason not to use the 'gold-standard' of DNA sequencing to identify this supposed, engineered organism."
' I would love to ask the good doctor about this cheap and accurate technology he speaks of. I see "no reason" why this has not already been done. Do you? Maybe it has? Who knows? We don't. '
You bring up a point that, in all honesty, I never even thought of until I read the above statement. You don't know what I have done or not done. This is an issue that I should have thought about but had not. Please stay with me for a bit while I try to explain why I never thought to discuss my lack of progress with the Morgellons community.
A) I am about to use the term 'professional' with regard to biomedical research and I just want to make clear what I mean. I mean 'professional' in the basic sense of 'the way one makes a livelihood'. I don't mean professional in the sense of a doctor or lawyer; that sort of thing. I am paid to be a scientist and in general, I have resources that most amateur researchers do not have at their disposal. Now, also I am not using the word amateur in a negative sense, the way some might say 'amateurish'. The basic meaning of amateur is that a person does not do the work or endeavor for a living; it is not the source of their livelihood. My use of professional vs. amateur research is not meant to disparage anyone's efforts in science. Many of the asteroids and comets that have been discovered in recent years have been done so by amateur astronomers. Some of them have better equipment than many academic institutions, but they are still amateur in that they do not get paid to be an astronomer.
B) There is an aspect to being a professional scientist that many people are unaware of. We don't publish our failures. For the most part, moving the cutting edge in any field forward is dependent upon what does work & not the failures. Silly as this might sound, I really never thought about updating on the lack of progress as I would never do that in my field. This was pretty clueless on my part as I know that many Morgellons sufferers, their friends, family members and health care providers want to know what is going on. If I was doing this purely from an academic perspective I would research this for months to years & never write or publish anything until a complete enough package of information was accumulated that I could write a manuscript & send it out for review & publication. As an example, my last co-authored publication
(http://www.molbiolcell.org/cgi/content/full/16/6/2972) took a couple of years and 15 co-scientists in Florence, Turin, Milan, Italy and Tulsa, USA to accomplish the work. The manuscript was first submitted in October of 2004 and after more experiments and revisions, was finally published in the June of 2005 issue of the Journal. I chose this paper as an example, not because it has anything to do with Morgellons, but because it is freely available at the above link. Many journals have subscription-only access to articles that they publish, but I think this one can be accessed from anywhere. We never discussed this research with any outside groups until the paper was published. This slow pace is typical for professional scientists. The general feeling is that it needs to be as perfect and complete as possible before it is ready for public consumption (and here 'public' means other scientist). I have NEVER planned secrecy regarding successes with my Morgellons research. From the beginning, I have planned to release important information as soon as I am sure about it. I had NOT planned to make everyone wait for the glacial pace of writing a manuscript, getting it reviewed and then published; which can take a year or more. Since I have not identified the causative agent(s) of Morgellons, I didn't think I had anything to report. I see now that reporting failures or limited success should be done. In my field there are no forums or posting boards or anything like that, so I had not thought about keeping those with personal interest in Morgellons informed in a 'real-time' way. In my mind, the science and my work on Morgellons were separate from the conversations surrounding Morgellons and that are going on around the clock and around the world. I realize now that I was wrong about that. A bit further below I will describe the current state of my research, including the dead-ends and failures that I would never normally discuss with the scientific community; not because I am embarrassed or feel like a personal failure, but because it would be considered irrelevant and not of interest within the scientific community.'
"Availability of the organism's DNA or RNA should not be a problem. When properly handled, the DNA and/or RNA from just one single cell should be enough to amplify and then sequence."
If this, "should not be a problem" what is the answer? Does the good doctor have one? Who can answer this????"? '
I did not explain what I meant and your question is quite appropriate. What I meant is that if the maker of the video actually HAS in possession a few cells of the cause of Morgellons, or even better a culture of the organisms, then he should have plenty of DNA (or RNA if 'it' uses RNA instead of DNA) to do what I described. The DNA will need to be amplified by a process called PCR (polymerase chain reaction). All it takes is a few cells worth of DNA or RNA to be able to amplify a stretch of DNA for sequencing. I might have misinterpreted the video, but the way it was presented it left me thinking that he has the organism isolated or at least he has access to the organism. IF that were the case, then it should be no problem to extract the DNA/RNA perform PCR and sequence it. Also, when I say 'not a problem' I mean it within the context of lab work & not the way I would use the phrase outside of the lab. I shouldn't have done that. Molecular biology can be very tedious and repetitive. I might take weeks to get a single PCR reaction to work so that enough DNA can be generated to sequence. In my glacially-paced world, generating the sequence, whether in 3 days or 3 months would be 'not a problem'. Bad phrase for me to have used. However, this does NOT change the meaning I intended. IF the maker of the video DOES have in his possession, or access to the organism that causes Morgellons, then there should be plenty of genetic material to amplify and sequence.
' "Hopefully, if the maker of the video feels that he has information regarding the cause of Morgellons Disease, then he will perform the necessary, proper and fairly easy experiments so that this information can be shared with other researchers. Just as with many things in life, talk is cheap." '
' Well I'll be. Who knew that these experiments are "easily" done? We wouldn't have known this before. I thought this was going to be hard, what do I know? Thank God this is so easy for them. Should speed things up do you not agree????"
Within the context of molecular biology, PCR and sequencing IS considered easy. It can be frustrating and time consuming, but 'easy' in the sense that it is ultimately doable. In my previous lab, one of the technicians had a degree in English, but ended up doing lab
research. She never had a formal molecular biology course, but after a few hours of training she could PCR with the best of them. Many aspects of molecular biology are considered 'cookbook' with regards to the techniques. PCR and preparation for sequencing fit into that category. The difficult part is identifying the causative agent. He claims to have already done that hard part. The DNA analysis in comparison, is the easy part.
Sharing information with other researchers????? Why in the world would tamtam even be bothered with suffers to begin with? None of us are researching anything, right? Could the good doctor be out of touch?
There was no intent on my part to disparage the research that anyone has done or will do in trying to figure out Morgellons Disease. I see that I did not specify, but I was referring to the research community of scientists who do research for a living. Quite frankly, I am in awe of some of the wonderful, high resolution micrographs I have seen from some Morgellons sufferers (or their loved ones). Many of those images are far better than any microscopic images I have taken. I do NOT say that in a sarcastic or patronizing tone. I mean it. I am not a microscopist by trade & will never be as good with a microscope as some of you who may be reading this. The information I meant was the information about the only thing that really matters; WHAT IS THE CAUSE OF MORGELLONS DISEASE? He claims to be in possession of that knowledge. If I even thought that there was a strong MAYBE that I had found the cause of Morgellons I would get that information out so that treatment options could be considered. There will be plenty of health-care providers willing to take a chance on a treatment, once the cause has been identified. Then, at a more leisurely pace I'd finish up all proper details for the academic community.
'Perhaps he is only intrigued by the actual organism. '
In this instance, 'he' means me. A fair enough issue to bring up, since most readers of this long-winded essay and I have never met. I will give an answer, but each person has the obligation to choose to believe me or believe that I am not telling the truth. I am definitely NOT ONLY interested in the actual organism itself. Personally, I wish that 'it' did not exist. I wish that no one suffered from Morgellons Disease. I clearly have no power to grant wishes.
'Talk may be cheep but in this case silence is not golden either. This silence creates a negative space that can be filled with all sorts of things and this is dangerous in my opinion. '
Absolutely true! I am trying to fill-in some of that void.
'MRF was created for Morgellons sufferers. It is a tax free organization and belongs to all of us. Do you feel like a part of this organization? People repeatedly ask to help them in any way they can. Are these offers ever accepted? Not that I am aware of. Maybe they have all the help they need? I truly hope this is the case. ???" '
Others will have to answer most of those questions you ask. The one question that applies to me is whether or not I feel like I am part of this organization. Since late last spring I have been the Foundation's Director of Research in a voluntary capacity, so yes I am part of the MRF. I am not a board member or responsible for the day-to-day running of the Foundation, so in that sense, no, I am not a part of the formal structure of the Foundation. I could choose to no longer volunteer or they could ask me to stop being the Director of Research and that would be the end of it.
' Apparently we walk a different path. Now be on your way. '
I think that some of our paths are not to different and overlap on at least one topic. We both want to know how to cure Morgellons Disease.
'I would have much rather had Dr. Wymore tell us if the DNA sequencing has already been done instead of only mentioning this to disprove a video. Does anyone else find this to be strange and sad?' 'I see contradictions everywhere! It's easy, inexpensive, and accurate...... Tell me why we are all still sitting here in the dark suffering and grasping at straws daily? ???" ' 'Why did I come to a public forum to look for answers rather than a foundation set up for people like me? Think about that one very hard.???????'
While one or two of your questions are likely rhetorical, I will address
the others. Here is my research update that includes failures,
dead-ends, unknowns and observations that will never be published, because no one in the research world would be interested. Some of what I am about to tell you has only been done once and until it is replicated is fairly meaningless in scientific circles. Yes, as I will discuss below, there has been DNA sequencing. No, it has not revealed the likely cause of Morgellons.
1) Individual red and blue Morgellons fibers were placed in bacterial media and cultured at body temperature. Isolates of those bacterial populations were grown on lab preparative media, blood agar, chocolate agar and a type of media that tends to support fungi better than bacteria. The bacteria were stained with various stains and observed both alive and dead. The bacteria were separated out into pure cultures (I think). PCR was performed and the amplified DNA was sent to a commercial sequencing lab to do the DNA sequencing. Two different
bacterial species were identified. They were: a) Pseudomonas putida and b) Corynebacterium efficiens. Does this identification mean anything? I do not know. Both of these can cause infections, especially in immunocompromised individuals. Both of these bacterial types are found in soil and can be found in skin.
The fact that they grew from fibers that were associated with skin makes it difficult to say if they are related to Morgellons Disease in any meaningful way, or merely normal skin contaminants.
Still, these are the only two DNA sequences to be identified so far.
2) The fibers can be dissolved in 6 molar hydrochloric acid, at 90 C. The fibers first fragment and then dissolve, much like hair.
The fibers are not touched by strong reducing agents or chemicals that are routinely used to isolate DNA (guanidinium isothyocyanate), even after sitting in the chemical for over a week. One preliminary spectroscopic analysis suggested a strong sulfur signal.
This has not yet been reproduced. A blue fiber was analyzed a little over a week ago by a collaborative chemistry lab.
This fiber was neither, cotton, cellulose nor any known textile. No definitive composition has been determined so
far. The chemical/spectroscopic analysis is an ongoing process.
3) I receive 2-15 packages of samples per week. We look at the samples in the order they come in but each sample may have 5-50 smaller packages of samples inside them.
We cannot examine all of them in detail. One emailer asked if my lab was poor and in a basement somewhere and another
person commented that I have been given all of the material I need to solve the mystery, but it is up to me to do so, I just need to hurry up and do some work.
Just to be clear, no, my lab is not in a basement. As for the poor vs. rich, that is a tough call. Rich labs have million dollar grants, and I do not have one of those, so maybe poor would be a better description of my labs financial status.
On the other hand, I amnot lacking for supplies and normal operational needs.
My lab personnel consist of my full-time lab technician, an undergraduate who volunteers a few hours a week and myself.
We are a small lab for sure. The small number of hands in my lab that are working on Morgellons is a factor in how much gets accomplished.
If we quickly examine the submitted samples and move on there is the risk of overlooking something important.
If we spend a lot of time on individual samples we keep getting the backlog of samples even further behind.
Trying to strike a well-balanced approach is not trivial and the time spent per sample is variable, depending on the nature of the sample.
I can only ask that people who have submitted samples be patient.
4) There are many ideas about the cause of Morgellons that have been forwarded to me.
Some of the proposals that people have sent me include: a) springtails, b) S. maltophilia, c) Strongyloides, cutaneous larva migrans and nematodes in general d) flukes, e) parasitic nematomorphs from cotton, f) engineered organisms (either industrial-strength that got into the environment or intentional bio-weapons), g) extra-terrestrial, h) ancient life-forms that escaped from an earthquake fault or volcano, i) viral, j) 'other' protozoans or parasites, k) non-contagious genetic or environmental factors and l) dangerous dental work.
The bad news is that each of those ideas has proponents who feel they have proof for their idea. The good news is that the more specific and refined the idea, the easier to get evidence for or against the likelihood that it CAUSES Morgellons Disease.
There is a distinction here, which needs to be perfectly clear. If a person has non-healing lesions, is in a weakened state or has a compromised immune system, there are many organisms and parasites that may set up house in/on that person. I am not interested in those opportunistic organisms
I want to find the CAUSE of the diverse and often strange
symptoms of Morgellons Disease. The cause must explain all of the
varied symptoms including the production or appearance of the red, blue, clear and dark fibers, the black specks, the sand-like granules, the callous-like membrane, the peripheral neuropathy and the central nervous system changes.
When I am trying to PCR and then sequence DNA I must use a small stretch of known (or suspected) DNA called a primer. Primers can be very general or very specific. When we think something is bacterial, there are primers that can amplify and then be used for sequencing the DNA that will work on ANY bacteria known. These same primers are used to find new and previously unknown bacterial types.
The reason is that all bacteria, from the ones living in everyone's small intestines to the exotic ones found in very novel locations, all share certain genes and stretches of DNA. Such primers are perfect for searching for unknowns that we grow in the laboratory from the fibers or scabs of Morgellons sufferers. But, if we think it is a specific organism, the primers can be designed that will ONLY amplify that specific DNA.
With that in mind, I feel that a) & b), springtails and S. maltophilia can be eliminated. The primers for the stretch of sprintail DNA will amplify a specific gene from over a thousand species of Collembola and yet we can never amplify this DNA from fibers, scabs, dried skin or callous material.
Even if the Collembola had been in contact with the scabs or the fibers it is likely they would have shed a few cells and that should be enough to amplify the Collembola DNA. Since that hasn't happened, I consider it unlikely that Collembola are the cause of most of the Morgellons symptoms. Also, none of the Collembola proponents have explained to me where the fibers are coming from or why the neurological effects would make any sense from a Collembola infestation.
Similarly, in addition to the general bacterial PCR primers, we have S. maltophilia-specific primers and cannot amplify any DNA. I also do not think that the proponents of allergies to bad dental
adhesives/antibiotics have made a very strong case.
First, the sulfa drugs need to be at a high enough concentration to cause an allergic reaction & as a pharmacologist I find it hard to believe that such a concentration could ever be reached from sulfa-drugs leeching out over years and decades from the dental work. Second, some patients actually report some improvements while on sulfa-style antibiotics. Well, it can't work in both directions; a person either is or is not allergic to sulfas, and the drugs will either cause the problem or help it.
Third, there are children who have never had any dental adhesives/ crowns/ caps on their teeth that have symptoms of Morgellons Disease.
Remember, I'm not trying to convince anyone of anything here. I have been asked to not be secretive and say some of what is on my mind. That is what I am doing here. This is NOT a position statement from the Morgellons Research Foundation. These are my personal thoughts and nothing more. I am trying to give you a glimpse of my thought process as a scientist.
I will address the Strongyloides and CLM proposals in a separate section. Most of the other proposed Morgellons causative agents are not easily testable, until a specific species is identified or suggested.
D-k in the above list all remain candidates. I'm not saying any specific ones are LIKELY, but from a scientific perspective, until they are eliminated (which won't be easy for some of them) they remain candidates. There is also the possibility that a combination of the above may be necessary. There may be a genetic predisposition or a genetic protective component to Morgellons. Similarly, there may be certain environmental factors that trigger or repress the symptoms.
5) Some of you may have had the misfortune of receiving one or more vile, vulgar and belligerent emails from a person or two who claims to have figured out what causes Morgellons Disease and who is also kind enough to share that information, but only for the right price. The website in question claims that there really is no such disease as Morgellons and that it is nothing more than a combination of common parasites and nematodes. Specifically, Strongyloides is mentioned alongwith cutaneous larva migrans.
I would like to quote from this website (as of 4/12/06): "By the way, fibers are the shedding of their shell/ skeleton!" That is utter nonsense for multiple reasons. Nematodes/small worms/Strongyloides have neither a shell nor an internal skeleton or an exoskeleton. They have a multi-layered cuticle. Even if one wanted to make a point over semantics to give the benefit of the doubt to him/them it still makes no sense.
The Morgellons fibers cover a range in size from way tinier than even the smallest Strongyloides to several inches in length. The Morgellons fibers are not hollow, nor do they look like a split open cuticle. The red and blue fibers have no cellular structure or even 'ghost' outlines where the cells might have been. Many of you have probably spent more time looking in a microscope than I have. Most Morgellons sufferers that have looked at the fibers feel the term 'fiber' best describes their appearance. Small or large, red or blue they look like fibers. Also, published data suggests that Ivermectin will cure 97% of Strongyloides infections with a 2 day course of treatment. Some Morgellons sufferers have taken Ivermectin for weeks or months and few have reported that they are cured afterwards. There has been no DNA that can be amplified from the fibers that has been anything other than normal contaminating bacteria or in one case human female DNA, likely from cells of the person who submitted the fibers (it looked like there was a bit of bleeding & some white blood cells may have been the source of the human DNA). I do not know if the fibers are synthesized, shed or how they form, but they are not the shell/skeleton (which is impossible) or cuticle of Strongyloides. In an effort to be thorough, I will not completely reject the hypothesis that Strongyloides are involved in some cases of Morgellons.
I do, however, reject the idea that they are the CAUSE of Morgellons Disease. I will order PCR primers for Strongyloides and PCR from the scabs and fibers to see if there is any evidence of cutaneous larva migrans.
6) Some Morgellons patients have been fortunate enough to find kind and competent health-care providers. This is wonderful if it has been your experience. Unfortunately, many Morgellons Disease sufferers have not been treated in such a kind manner and have often been labeled as
delusional, without the benefit of a through physical examination. Many of you have been told, 'stop scratching and you will heal'.
Well, while my ultimate goal is to find a cause and cure for Morgellons Disease, one of my short-term goals has been to convince a skeptical medical world that Morgellons Disease is not an internet-based subset of Delusions of Parasites.
Over the last 6-9 months, I have been accumulating data (really evidence) that SOMETHING really is going on here. That, this is not just a gigantic conspiracy, or herd hallucination by a group of delusional people. I have been convinced that Morgellons Disease is real for quite a while now. Every day that we do not find the cause of Morgellons Disease, it is not a waste of time. Because, practically every day we find more of the evidence that further confirms the reality that Morgellons is not DOP. Between emails & phone calls I am fielding questions from physicians, nurses and nurse practitioners, physician's assistants and public health officials from state and city/county parish health departments. They all would like answers, which I cannot provide to them. Still, I think that most of them are willing to consider the possibility that Morgellons is real, and that is some progress.
There are those who refuse to discuss the science or evidence and are obsessed with the 'impossibility' of the symptoms of Morgellons. Most recently, I had a pathologist suggest that the fibers were being injected under the skin with a hypodermic needle and syringe. When it was pointed out to him that some of the lesions are on the back where a person could not possibly inject his- or herself, the pathologist had the obvious answer: the Morgellons patient was getting their husband/wife/child to inject into those hard to reach locations.
I was pretty amazed that he was able to even think up such a crazy idea, let alone think it more likely than the possibility that Morgellons was real.
7) What's next for the research? Continue the search for any unusual/completely unexpected bacteria that are grown from fibers, scabs or other Morgellons material. A search for living organisms; eggs or immature forms of any parasites that might be involved in Morgellons. More spectroscopy of the fibers and chemical analysis to try to identify what the fibers are made of. Clinical faculty here at OSU-CHS will see patients for evaluation and sample collection, as well as identifying other health-care providers who want to participate in this research.
As soon as funding becomes available, an epidemiologist will begin her PhD studies in my lab by initiating a formal epidemiology study. We have bits and pieces of information but we really need this formal epidemiology study to help guide the direction of the clinical and lab-setting research.
Randy S. Wymore, Ph.D.
Assistant Professor of Pharmacology & Physiology
Oklahoma State University
Center for Health Sciences and
College of Osteopathic Medicine
1111 W. 17th St.
Tulsa, OK 74107