Sep 182007
 

There have been a couple of Morgellons articles in British publications recently, one in New Scientist (subscription required):

http://www.newscientist.com/channel/health/mg19526210.700-morgellons-disease-the-itch-that-wont-be-scratched.html

And another in the Daily Mail/London Evening Standard, from their “This is London” web site:

http://www.thisislondon.co.uk/news/article-23412621-details/M/article.do

The latter article illustrates many problems endemic in the “Morgellons” media phenomenon – a mixture of superficial reporting, and blatant contradictions.

Firstly, they start out on the wrong foot by describing Morgellons as:

The symptoms sound like something from The X Files – sufferers complain of a crawling sensation all over the body, egg-like lumps under the skin and, even more bizarrely, cuts which produce tiny red and blue fibres.

“egg-like lumps” suggests egg sized lumps, which is not a symptom, and nobody would describe their sores as “cuts”, so already the reader has totally the wrong idea as to what we are discussing.

mvc-049s.jpgThen we get this photo of the hand of someone who claims to have Morgellons. This is an interesting link to the quackery surrounding Morgellons. Now I’m not sure who they got this photo from, but I first saw it over a year ago when Russell Altman emailed it to me (this is the original photo, the one of the article is cropped and enhanced slightly). It was taken March 21, 2006 and is the hand of “Connie“, someone that Russell claims he cured with the quack remedy “NutraSilver“, which he also conveniently sells. There is a lot of selling of remedies for Morgellons.

Then we get the patient, Beverly Warren, 63, from Manchester, who says “It feels like tiny insects crawling of biting under my skin“, and later “I scratch and scratch, bit it doesn’t help“, and the article then notes “Beverley’s arms are covered with dozen of sores“.

neurotic_excoriations_44.jpgJust like Beverly, many people who have Morgellons have no problem describing how the scratch for hours, or even how they spend hours picking at their skin. Yet somehow, as in this article, the connection is not made that the scratching and the picking as actually causing the sores and the lesions. It’s called Neurotic Excoriations, and looks like the photo on the right:

And the sensation of insects under the skin is also well known. It’s called formication, and it’s caused by many physical conditions, including Menopause, diabetes, or reactions to prescription drugs. Formication can lead to scratching, which can damage the skin, leading to more itching and formication, which creates a vicious itch-scratch-itch cycle that can be impossible to break.

It’s quite possible that 11 years ago, Beverly, then aged 52, was going through menopause, and was suffering from formication(as 20% of menopausal women do, to some degree), she scratched, and this precipitated her current condition. But again, it could be any number of things.

Moving on, we have Rita, 47, whose symptoms started at age 43, and who illustrates the nonsense behind the claim that “According to Morgellons sufferers doctors are dismissive of their illness“:

“The doctors are very dismissive. One doctor sent the fibres off to a lab, but all she said was that nothing abnormal had been detected.” Among Morgellons sufferers, this is a common experience.

Here’s the contradiction: the doctors are “very dismissive” and yet they “sent the fibers off to a lab“. How is this dismissive? They analyzed the fibers, and found they were nothing abnormal. That sounds like they took her claims very seriously. Beverly, also, speaks of many “doctors and dermatologists”, and “two skin biopsies” – again this does not sound like she has been dismissed, in fact it seems like doctors have gone to some length to find out what is wrong with her.

The article wraps it up with some words from “a handful of experts“, without noting that they are actually not experts in dermatology, nor in fiber analysis, or epidemiology, or anything that might help them discern what is actually going on.

The real experts, dermatologists and psychologists, are not dismissive. In fact they take this problem very seriously, and have a great deal of sympathy for those who are suffering from these symptoms. Saying a condition has a psychological component is not dismissing it, it’s correctly identifying it, so it can be properly treated.

Sep 112007
 

[EDIT: The following lists changes made to the MRF Web site on 9/11/2007, deleting several of the additions of 9/10. Shortly after writing this, the MRF web site reverted back to a version from a week ago, with all the new material on filarial worms removed The full 9/10 text of these pages can be found here: http://morgellonswatch.com/about-2/mrf-filaria/ ]

Onchocerca cervicalis (Horse worm)It seems like someone at the MRF was a little over-eager to share their new theory with the world. Yesterday the MRF web site was suddenly changed from cautious suggestion that Morgellons is related to Lyme disease, to wide ranging speculation of animal worms and rare bacterial infections. These new theories are rather out of keeping with the prior tone of the MRF, and this make me wonder if a new hand is at the helm.

But then today, many of these statements were removed as quickly as they were added. Did cooler head prevail? Is there some internal debate at the MRF? Why are the thought processes of an organization being reflected on their web pages in this manner? Can the media continue to give the MRF any credence in light of these unorthodox claims?

The changes to the MRF are happening so fast that you probably never noticed them. Here are some of the more interesting changes between 9/10/2007 and 9/11/2007:

On the “Case Definition”, deletions in red:

This phenomenon is distinctly similar to the mass movement of microfilaria produced by intravascular adult Filaria typically between 1 and 4 AM.

5. Musculoskeletal effect is manifest in several ways. Pain distribution is broad, and can include joint(s), muscles, tendons and connective tissue. Both vascular and “pressure” headaches, and vertebral pain are extremely common, the latter usually with premature signs of degeneration (e.g., age 20) of both discs and vertebrae. All are characteristics of disseminated Actinomyces species

4. Acute changes in skin texture and pigment. The skin is variously thickened and thinned, with irregular texture and hyperpigmentation pattern. Hyper-growth phenomena are common (nevi, skin tags, microangioma, lipomas, callus formation and Morphea). A common characteristic of infection with Onchocerca cervicalis (A filarial species).

5. Arthralgias. Frequently reported, WITHOUT ARTHRITIS. Common joints are fingers, shoulders, knees and lower vertebrae. Common in chronic Dracunculus insignis infection. (A filarial species)

On the welcome page, this was removed:

Curiously, NO serious search for parasites exists in the published medical literature

also removed, regarding the CDC:

but without a plan to explore and define the true illness they are intending to address. Although it is highly unlikely the CDC will have moved beyond the initial RFP process when peer-reviewed papers reveal the nature, etiology and solution of this illness, we are pleased they are willing to explore it. There will always be a large amount of verification and clarification work to be done as well as medication optimization.

Then the FAQ:

The actual unnamed disease represented by the Morgellons label is vastly different from DOP. A recent systematic study of similar patients has unequivocally verified infection in most with more than one species of zoonotic Filaria and all with unexpected overgrowth of a common commensal bacterium, Actinomycosis israelii. Both are treatable. The second large illness component found in these patients is indeed an episodic delusional state and a verifiable high prevalence of bipolar disease. Review of available NLM data corroborates only that the presence of delusion has been assumed the genesis of imagined infestation with parasites without ever having considered or tested for parasites. Use of even a Mattel microscope would have revealed the Actinomycosis spread, and a simple CBC and CBC will show the elevated monocytosis, abnormal red cell indices, frequently elevated calcium and low potassium.Available, but more specific tests readily reveal elevated inflammatory markers, elevated cytokines confronting chronic infection, and a chronic immune deficiency state resulting in activation of most herpes viruses, many zoonoses, and of course parasites of a still unknown number and species. Physical effects are to skin, brain, peripheral nerves, cardiac conduction, autonomic nervous system function, and hormonal effect. Debilitating subjective symptoms include local or general chronic pain, chronic malaise, and unusual but nonetheless well-documented dermal inter-plane movement of Onchocerca volvulus.

The typical skin lesions vary but fall into at least two distinct types. One consists of near-circular (about one cm) bluish colored scars that persist for decades but begin as one mm raised lesions followed by weeping ulcers. The second are eczematous-like. All occur most frequently on distal limbs or the back or face. The Filaria species commonly identified clearly create the second type lesion. The first, when lesions are in clusters, may be Actinomycosis or when not clustered, Filaria. Actinomycosis lesions may itch, but Filaria dermatoses itch with incredible ferocity.

Some physicians are attempting to treat patients with this illness, although they do not understand its cause. The disease we are addressing exists incorrectly labeled in medical texts as Delusions of Parasitosis. Because of this, cookbook clinicians will necessarily assume you are psychotic or delusional and look no further. In truth, prescription of psychopharmacological agents will help many patients with emotional discomfort…a real part of the illness. However, these drugs DO NOT address the actual parasite infestation readily treated with anti-helmenthics. Psychiatric drugs, again, do not address other components of the disease, but all may eventually respond to drugs that target the Chlamydophila species. THE LATTER REMAINS TO BE PROVEN.

As adequate funding becomes available, we are required by law to regularly post the progress and findings on the Foundation website so as each of us contributes, we can see the result.

These almost sound like the theories of George Schwartz, or perhaps Neelam Uppal. But my best bet is still William Harvey, although I think it’s odd that there is no mention of borrelia burgdorferi (Lyme). Harvey has previous given credence to a wide range of opportunistic parasitic infections based on borrelia burgdorferi infection reducing immunity.

Having looked at the deletions, lets look at something that is still there:

Is it contagious?

Science must answer that question to be certain. However, most data obtained to date strongly suggest this possibility. Its’ mechanism does not appear simple or straightforward. Suggestive data include its appearance in many family members, the finding of parasites, activation of infectious herpes viruses, and low-level identification of antibodies to various zoonotic bacterial antibodies. Many infectious agents can, of course, be transferred by intermediate vectors such as flies. But lack of these expected vectors in many regions of prevalence suggest silent inter-human transfer. The most recent strong hypothesis suggests that an inter-human infectious agent, easily spread by droplet transmission is initially responsible for creating a chronic immune deficiency state. Only such a state might account for the extreme number and types of activated agents that have become measurable and chronic. Its movement is likely silent because of the time for second-agent expression. If highly similar other chronic illnesses turn out to be generated by this initiating agent, the numbers infected are already enormous, so attempts at avoidance near useless now.

That’s rather a ramble, but I think that’s Harvey saying that it’s airborne transmission of borrelia burgdorferi , which causes a chronic immune deficiency state, which allows all these exotic parasites (the “second agents”) to infect you. He also suggests that Chronic Fatigue Syndrome and a lot of other illness are also caused by this, and hundreds of millions of people are infected. This tallies with his paper: ‘Lyme disease’: ancient engine of an unrecognized borreliosis pandemic? , published by Medical Hypothesis, not peer reviewed.

Sep 102007
 

The Morgellons Research Foundation seems to be undergoing a slow meltdown. After the split with the New Morgellons Order last year they have been relatively quiet. Recently though, they stopped asking people to register at the Oklahoma State University, and instead started heavily soliciting donations directly to the MRF.

Then, in conjunction with releasing their latest newsletter, the MRF updated their main page with some rather unusual language:

The Morgellons Research Foundation (MRF) is a 501(c) 3 non-profit organization dedicated to raising awareness and research funding for a seriously misconceptualized illness that we have provisionally labeled “Morgellons disease“. The name Morgellons disease was borrowed as a temporary label by the biologist mother of a two-year-old boy who became chronically ill in 2001, one component of which was visible ‘fibers” protruding from facial skin. The eventual placeholder name came from (1) isolated attention to the skin lesions and (2) after realizing the boy’s illness did not fit the label Delusions of Parasitosis given him by medical clinicians. In a search for others like her son, the biologist created a website for intercommunication. By 2002, she had been contacted by patients from all 50 states as well as globally reporting similar symptoms. The sheer magnitude and rapidity of response compelled creation of the MRF.

That’s very odd. It has never been suggested, by Leitao or anyone else, that her son had been diagnosed with DOP. Nobody is going to diagnose a two-year-old boy with delusions. The rather odd phrasing here suggests this was not written by Mary Leitao.

The page was updated after a few hours to read (as of 9/10/2007, 4:30PST, changes highlighted):

The eventual placeholder name came from (1) isolated attention to the skin lesions and (2) after realizing the boy’s illness did not fit the label Atopic Dermatitis given him by medical clinicians. In a search for others like her son, the biologist found that a third had been formally diagnosed with Delusions of Parasitosis. By 2002, after creating a website, she was contacted by patients from all 50 states as well as fifteen other nations reporting similar symptoms. The sheer magnitude and rapidity of response compelled creation of the MRF.

Seems like someone realized their mistake.

The page continues:

Following a recent clinical database study of patients, the cause and treatment of Morgellons disease are now becoming known, as is the probable mode of transmission. We now know the disease affects people of all age groups, including children. Numerous family members are usually affected simultaneously, and epidemiology review suggests the disease appears to be spreading rapidly since 1980. (The number of families currently registered with the MRF, although large, is thought to represent a fraction of the true number affected.) The disease as we now know it to be, IS currently recognized by the medical community. It was erroneously labeled Delusions of Parasitosis, a name now poised to join the egregious dinosaurs of medical nosology (naming). Because of this misconceptualization combined with practitioner indolence, all patient symptoms had been assumed to be emotionally generated, with little attention to the skin or other organ systems. Curiously, NO serious search for parasites exists in the published medical literature.

Again rather odd. DOP has been recognized as a condition for over a hundred years. There is no doubt that it exists. The above seems to be suggesting that all cases diagnosed as DOP are actually “Morgellons”. this will come as news to Randy Wymore, director of the OSU Center for the Investigation ofMorgellons Disease, who says:

Delusions of parasites (DOP) is a diagnosable condition [...] Of the many thousands who have self-reported at the OSU web-based registration site we do not know whether 1% actually suffer from DOP or 90%.

Perhaps this disagreement is responsible for the widening split between the MRF and OSU.

Finally, regarding the CDC investigation, the MRF now says:

Recently the CDC has taken a public stance regarding the still-undefined “Morgellons disease”. Fairly certain this position was engendered by political and patient pressure, we are nevertheless glad they are willing to review information on mostly self-diagnosed chronically ill patients, as we feel certain this will bring to light the full spectrum of illnesses represented by the Morgellons class of chronically ill persons.

This baffles me. They seem to be admitting that the CDC is performing an investigation without any evidence to support that investigation, and that Morgellons is actually a wide variety of illnesses.

So who is writing this? Not Leitao, Savely or Stricker, they are much more reasonable and level headed. Not pez1103, the MRF’s advocacy coordinator, she does not use language like “egregious dinosaurs of medical nosology”

I suspect that this rather chaotic and discordant editing might be William T. Harvey’s work. He’s the chairman of the board of the MRF. I suspect that he’s going to announce that he’s discovered that Morgellons is a multiple set of illnesses and opportunistic parasitic infections caused by an altered immune system compromised by infection by Borrelia burgdorferi (Lyme disease). [EDIT: Wrong, they are claiming it's worms]

Sep 032007
 

279pill_man_lores.jpgSuppose you have 10,000 people who have self-diagnosed themselves with a mysterious disease that causes horrible itching, and makes you think fibers are emerging from your body. In many cases they have been diagnosed as delusional, and have been unable to work with their doctors in finding effective treatments. These people have very frustrated, and angry at the medical system.

Suppose then an organization comes along, and tells them that they are absolutely not delusional, and they actually have a “newly emerging infectious disease“, and if they are “given appropriate antibiotics long enough” it will “resolve most symptoms“. and that “the treatment presently most successful is antibiotics.”

Two members of this organization even run a clinic to sell these antibiotics for “long enough“, but their services are very expensive, and these two people are just about the only people in the country who sell this treatment, so most of the sick people either can’t afford it, or can’t travel to see them, so these two only sell their treatment to perhaps 200 people out of the 10,000 who self-diagnose.

So what are the other 9,800 going to do? Many of these people were diagnosed as delusional (in addition to whatever other physical symptoms they have), they then self-diagnosed as having “Morgellons”, after reading about it on the internet. They then read on the internet that “Morgellons” can be effectively treated with antibiotics.

So it’s quite obvious what self-diagnosing people are going to do. They are going to self-treat. They are going to buy antibiotics, and they are going to take them. They are most likely going to harm their health in the process.

Sure, antibiotics are prescription only, and with good reason. But creative minds can find them on the internet, or other places. Take this recent thread titled “how do u get antibiotics for so long“. Some of the answers were:

Find a MD to prescribe tetracycline for “ROSEA” then you can get on it long term.
Most women have it. The MD would not prescribe ATB’s for me for LYME or Morgellons,
but said, OK, you have Rosea and I can do it for that.

Also, from mexico, I order Flagyl (NAME BRAND) which fights protozoa and used in ob/gyn settings for chlymadia. Tetracycline and Flagyl [Metronidazole] work together and compliment each other.
——————————————-
medsmex.com
——————————————-
Here are a couple of more sites for antibiotics without a script:

http://www.aclepsa.com/

http://www.drugdelivery.ca/

I have ordered from both places, you should just do a search for the type of antibiotic you are looking for, there are a bunch I found on Google.
——————————————-
I talked my old doctor into prescribing doxycycline for two years based upon Dr. Garth Nicholsons treatment for CFS, I have FMS. I took it for 1 year 9 months. If helped a lot but hard on stomach. All my symptoms are back.
——————————————–

and in another thread:fish-cillin.jpg

I haven’t tried [Tetracycline ] but I know I can get it at the Feed Store (morgellons pharmacy)

Note that the “Feed Store”is referred to as the “Morgellons Pharmacy”, because you can buy antibiotics at the feed store that are intended for livestock. This is something that is well known in the chronic Lyme community, and has hence been transferred over to the Morgellons community. Anti-parasite drugs such as ivermectin can also be found at the local feed store, and are also consumed by people who think they have Morgellons. You can buy some antibiotics (like Ampicillin, sold as “Fish Cillin”) at the pet store in the mall. You can even get these antibiotics on Amazon.com, see also: “Fish Cycline” (Tetracycline), “Fish Zole” (Metronidazole) and several other types of “Fish” antibiotics. Read the comments, nobody seems to be buying it for fish (or birds, if you want Sulfamethoxazole)

So what you have here is a lot of sick people who do not know what is wrong with them, who have somehow self-diagnosed themselves with a disease that practically no doctor thinks is real, and then are self treating themselves with a treatment that almost no doctor would recommend. They find ways to buy these drugs, either from Canada or Mexico, or they take antibiotics nominally labeled for fish.

It’s a major public health problem. Self-diagnosis and self-treatment (for months) with antibiotics for these 10,000 people means:

1) Their actual conditions, physical and/or mental, are going untreated
2) They will suffer from side effects from the antibiotics, possibly serious, which will add to their sickness, further complicating correct diagnosis, as they are taking these antibiotics covertly.
3) They increase their risk of developing antibiotic resistant infections, such as MRSA, and contribute to the overall growth of these “superbugs”.

Sadly the Morgellons Research Foundation, the New Morgellons Order, and Oklahoma State University are greatly contributing to this problem by promoting antibiotics as a treatment, before anyone has even discovered a disease.

Related Links:

http://aquaticpath.umd.edu/news/#anchor14215930

http://www.defenselink.mil/news/newsarticle.aspx?id=43579

http://www.cbc.ca/news/story/2002/07/18/fish_antib020718.html

http://abc.go.com/primetime/accordingtojim/episodes/2007/11.html

Aug 282007
 

Morgellons is by far the best known example of one of several similar conditions characterized by crawling sensations, skin problems (lesions and sores), and the finding of fibers on the skin. The more general term for a condition like this is a “Fiber Disease”. Mary Leitao discovered it on the internet in 2002, and decided it applied to her son’s eczema She called it “Morgellons”, and started an internet phenomena. But the exact same list of symptoms has been around for a lot longer.

Of course, as the Morgellons Research Foundation points out, since these conditions resemble Delusions of Parasitosis, then similar things must have been happening at least since DP was first described over a hundred years ago. What is relatively new is the formation of groups that band together in their insistence that their conditions are caused by some unidentified parasite, toxin, or infectious agent. There are various groups, and various theories, dating back many years.

The following is a brief time-line of various important points in the development of Fiber Disease organizations.

1947, in Skin Manifestations of Internal Disorders, Kurt Weiner describes DP patients who:

“persistently bring little follicular plugs, scales, or woolen fibers wrapped in paper or kept in a box to convince the doctor they have worms or insects in their skin”

1951, Feb – Jay Traver published her paper “Unusual Scalp Dermatitis in Humans Caused by the Mite, Dermatophagoides“. This describes her experiences since 1934 of her own belief in infestation, but inability to get doctors to concur. While she does not mention fibers, her account is often pointed to as validation by people with the fiber disease. Later examination of her evidence concluded the few mites she found were ordinary dust mites, and Traver was in fact suffering from delusional parasitosis (see: John O’Donel Alexander, 1984, Arthropods and Human Skin)

1995 – Approximate date of cases of “NCS” described by Amin in 2001, below.

1995 – Approximate date that NPA started recording cases of “an increasing number of individuals reporting lice or scabies but describing symptoms inconsistent with either of these parasites.”

1996 – Approximate start of popular usage of the internet. From 1996 to 2007, internet usage grows from 16 million to 1093 Million. The internet is a major factor in spreading knowledge of the fiber diseases.

1998, Dec – Oldest archived version of the NUSPA web site. States:

However, because the parasite appears to have so many different metamorphic features, many of which may resemble, human hair, fabric or lint (for example) turn of the century physicians wrongly assumed their patients must have been suffering from a psychosomatic illness rather than a disease.
Rashes, lesions, itching, burning sensations, track marks, scratches, and papules appear from nowhere on the surface of the skin, along with burrows under the skin, containing what the sufferer describes as “eggs”. Some people complain of having symptoms in only one spot on the skin ( i.e., scalp, face, rectum, groin area) while others are infested from head to toe. Acute insomnia can also be a symptom of this disease.
Black specks, iridescent crystals, microscopic hairs, wormlike creatures, hairlike creatures (the size of an eyelash to several inches long, and colors ranging from transparent to shinny black) “lintlike balls” bloody and/saltlike granules and threads, have all been described as emerging from the lesions. Often clothes, bedding, carpets, furniture and cars are heavily infested, again without remedy.

1999, Feb -Postings on parasite mailing list mention parasites that look like “lint” and “hairs”. (Posts byJules and Curtis W. King.)

1999, Oct – Posting on “Elliot’s Disease“, mentions involvement with the NPA.

2000, Feb – NPA has a “Reporting Registry” for Elliot’s Disease (or: “undetermined pathogens which may mimic lice and scabies“), listing the following symptoms:

Sores or lesions, Biting or stinging sensation, Itching, Lumps on head/scalp, Sticky residue on skin, Sparkly particles on skin, Scaling skin, Hair breaking off, White specks on skin, Black specks on skin, Problem in genital area, Itchy, watery eyes, Crawling sensation, Rash, Tracking marks on skin, Hard/crusty shell-like particles on skin, Fibers/lint/fuzzy artifacts, Hair-like dust particles, Symptoms worse at night, Tiny salt-like crystals on skin, Skin discoloration, Scarring

2001, Summer, Mary Leitao finds fibers on her son’s skin. She finds a “Scabies Forum” on the internet where people are discussing finding fibers.

2001, Nov – Neuro-cutaneous Syndrome (NCS): A New Disorder, published by Omar M. Amin in Discover Magazine.

2002, March – Morgellons.com and Morgellons.org domain names registered.

2002, July – Posting by Mary Leitao on medhelp.org mentions morgellons.org, and says:

The symptoms of this skin disease include stinging, pruritic (itchy), non-healing skin lesions. FIBERS of unknown origin are found deep within skin lesions, and are NOT the result of clothing or environmental fibers. Oils or lotions rubbed into the skin can cause many of these fibers to surface on clean skin.

2002, Dec – First Usenet mention of Morgellons, seems to be an excerpt from Rense.com linking Morgellons to chemtrails.

2003, Jun – The Morgellons Foundation, first recorded web site on archive.org, stating:

Individuals with the Morgellons experience itchy, inflamed, non-healing skin lesions. Stinging sensations are common. Unexplained hairloss is seen in a segment of the patient population, as well as a hardening or thickening of skin.
One of the most striking features of the Morgellons is the presence of fibers or filaments of unknown origin on or within skin lesions.

2003, Aug – NPA writes article on Collembola infestation based on digitally altered images, published May 2004.

2004, March, the first local TV News segment on Morgellons at KTVU, orchestrated by Ken Cowles. This is the start of a media campaign that culminates in the summer of 2006 with the ABC Medical Mysteries segment.

2004, May – Earliest mention of Morgellons on CherokeeChas.com (Later home of the NMO)

2004, Dec – Earliest Mention of Morgellons on Lymebusters.

2005, May – Oldest archived Morgellons post on Lymebusters message board.

2005, May – W. John Martin proposes “Alternate cellular energy pigments” as a cause of the Fiber Disease

2005, Aug – A mammoth single thread is started on biology-online.org, entitled “The Fiber Disease“, the thread runs around 7000 posts until Jan 2007, when it is locked.

2006, Apr – MorgellonsWatch.com earliest post, highlighting some inconsistencies on the MRF site.

2006, Aug – The MRF splits in two, and the NMO is formed.

Aug 222007
 

http://columbiacitypaper.com/2007/8/19/science-friction

 It has been a year since the media storm surrounding Morgellons disease peaked and died. The news angles were essentially the same: an alarmist anecdotal lede like the one above, usually featuring a Morgellons sufferer in the reporter’s respective area; the story—or at least mention—of Pennsylvania-cum-Surfside Beach, S.C. resident Mary Leitao, a mother of three who discovered and named the affliction and who founded the Morgellons Research Foundation (MRF); the emerging science, some legitimate, some quackery and the medical community’s dismissal of the symptoms as psychosomatic; something about the CDC; the whole thing capped off with a tragic, cliffhanger-like ending: “For now, the only thing they can do is spread awareness and hope for a cure.” Fade out.

Aug 172007
 

I did not really think many people take the various Morgellons videos seriously. Most of the time it’s pretty obvious what is in the video, and the rest of the time it’s not obvious what we are even looking at.

But it seems some people find these videos interesting, so I though I’d have a go at duplicating some. A couple of hours later, I came up with these three:

A Morgellons worm covered in various weird fibers:
http://video.google.com/videoplay?docid=9105798633025192447&hl=en

A Morgellons fiber with a life of its own, attacking my finger!
http://video.google.com/videoplay?docid=-8108284976579513990&hl=en

A live Morgellons worm, with something coiled inside of it, with fibers on its head.
http://video.google.com/videoplay?docid=8780637254219877005&hl=en

It just goes to show how things are open to interpretation.

If anyone has some other Morgellons video they would like me to duplicate, then please let me know.

Compare the second fiber video with this “real” Morgellons fiber from the former medical director of the MRF, Dr Greg Smith:
http://video.google.com/videoplay?docid=-987303669356961178&hl=en

Aug 132007
 

The following email comes from George, a Morgellons Watch reader:

I am not a Morgellons sufferer, although I have closely followed the debate since 2005. What I have to say here is not meant to be inflammatory to either side of this issue. What I do have to say is important: If you go to a physician and they prescribe you a medication: YOU SHOULD TAKE IT. Just because *you* don’t think you have DOP and you’re prescribed ORAP-doesn’t mean you shouldn’t take it. Take the full course prescribed. If you don’t feel better after fully following your physician’s advice then return to him/her and say- I did what you told me to and I’m not better, what’s next? For people who have pseudomonas or MRSA if you don’t take your antibiotic medications these infections will eventually kill you. These are life threatening and extremely dangerous. MRSA is much more of a threat than “morgellons”. This prevalent attitude of “he gave me an anti-psychotic, therefore he thinks I’m crazy, so I just won’t listen to him” is not helping either the treating physician or the patient. This could be why physicians do not want to be involved in treating this disease.

Let me just give a personal, non-morgellons related antidote. I have had problems with mood swings and occasional depression my whole life. When physicians would suggest I was depressed I would get angry and not fill the prescriptions. It got to the point where I was occasionally contemplating suicide. I saw a psychiatrist finally and was put on an anticonvulsant that is also used for mood regulation. My life has changed. I could have continued locking myself in my room, ignoring work and my family, and I may have never known the difference. I was willing to trust this doctor’s opinion and it has made a change I wouldn’t have deemed possible.

My point is this: many of you are using horse wormer to try to get help. You have no idea what this may do to your overall health over time. This may actually worsen your health to the point that you are suffering from more than just “Morgellons”. The wormer may have ruined your liver, but you may believe the liver damage is caused by Morgellons. I think that if all of the patients went to their primary care physician, took whatever meds they prescribed no matter what their personal opinion on those meds is, and then went back to the SAME physician and told them, nope that didn’t work what can we try now? You have a better chance of returning to health than you do by dousing yourself in bleach, mosquito spray, lice treatments and the other non-prescribed ways you are trying to help yourself. Take the road with your physician all the way to the end and then if you still end up without relief, then and only then consider more non-traditional methodologies.

Lastly MANY medications are used for off label purposes. You may not know why the physician prescribed that medication because you are just looking at the typical patient information that is available to you. Seroquel is an atypical antipsychotic and can be used for primary sleep disorders. ASK the doc why they are prescribing it to you, it may not be for the reasons you assumed.

Aug 122007
 

Randy Wymore (the Morgellons researcher at OSU, and a former director at the Morgellons Research Foundation) recently appeared on X-Zone radio (http://tinyurl.com/2azumk, about at 2:20), and here are some excerpts of what he said:

Question: What if the CDC concludes that Morgellons is Delusions of Parasitosis?

Wymore: That’s impossible from my perspective, and would be just completely irrelevant because the president of the medical school has in the last six months authorized a center for the investigation of morgelllons disease at, in Tulsa, at the Oklahoma State University Center for Health sciences.

Our physicians have seen, I don’t know the exact number, but, I’m a Phd, I’m a scientist, not a physician, and, er, they’ve seen somewhat on the order of around 30 patients, who claim to have Morgellons disease and only one of that group who came through who thought they had this most likely did not have Morgellons and might be suffering from DoP or another psychiatric disorder that does not have Morgellons as the cause of the behavioral changes. So, 29 out of 30 is a pretty high number, and just last week in fact, a couple came up from Texas, and the woman is a nurse and she was examined by Dr Rhonda Casey, a physician, assistant professor of pediatrics at the center at OSU, and right there, with a dermatoscope, that was being broadcast on an HDTV, she was able to find fibers under the skin of the person. In fact every single person who has claimed to have Morgellons disease, fibers have been found under the skin.

You know, the standard … comment is, well, the fibers are textiles, they’re clothing, they’re sticking to scabs, well our physician has completely avoided the open lesions areas and gone away from the lesions to what look like to the naked eye perfectly normal skin. And yet they (use) the dermatascope, which is basically just a hand held magnifying scope that is able to view smaller objects, they are underneath the superficial skin, are these unusual fibers.

Now, every person who claims to have Morgellons disease … have those fibers visible and zero percent of us, who don’t have Morgellons, when our skin’s been examined, not a single person in the sort of, you know, negative control population, which is basically some medical students, doctors, and so forth, … not one of us has had any of those fibers under their skin.

There is something physically different between individuals who have Morgellons disease and the rest of the population. So, you know, with those sorts of numbers, there is no question in, not only my mind, but our minds, collectively I would say, that Morgellons has a real physical pathology. So it’s impossible that they [the CDC] could come to the conclusion that it is a purely psychiatric disorder.

This is one of the problems with this population, there just has not been really adequate diagnostic testing. Now Dr Casey has, through her brilliance, or stumbling upon it, or whatever you want to call it, stumbled upon the fact that in the “normal” looking skin of Morgellons patient there are these fibers in the superficial layers of the skin that are not scarred or not, so there should not be any superficial, environmental textile fibers under the skin. Well, that’s great, but it would be nice if we could find some other diagnostic criteria. And, but you know, that, there you know you getting into some bigger bucks, but certainly a few hundred thousand dollars would be enough to make some very serious headway on this.

Why, if they have this 100% accurate diagnostic test, with no known false-positives or false-negatives, do they have to spend a “few hundred thousand dollars” to find another one?

Aug 112007
 

For a few years, the Morgellons Research Foundation (MRF) has been registering people who think they have symptoms of something like Morgellons. Last year the registration was moved over to Oklahoma State University, Center for Health Sciences (OSU-CHS), and the the MRF linked to that page, and recommended that people register.

In the last couple of weeks, this has changed quite significantly. Firstly the OSU added a bit of text to their registration page:

NOTE:
Information submitted to OSU will be kept in confidence and not shared with other organizations.

Now, I think this is because, as Wymore said a couple of days ago: “The president of the [OSU] medical school has, in the last six months, authorized a center for the investigation of Morgellons disease, in Tulsa, at the Oklahoma State University Center for Health Sciences“. Since it’s now a proper university authorized research program, authorized by the president (John Fernandes, I assume) , they have to follow certain legal procedures, like not sharing information (like email addresses) gathered from patients.

What this means, of course, is that the OSU can no longer share the registration information with the MRF (and it was perhaps somewhat legally dubious they were doing so in the first place). Now, you would think the MRF would obviously still encourage people to register with the OSU, but actually, no. The MRF actually has removed all mention of registration from their web site, starting with the “Register” link that used to appear on every page.

They also changed the welcome page from:

Please register with us. Your information will be kept confidential.

to:

Please sign up for our newsletter below.

Then on the advocacy page, under “Here are some of the ways you can become involved.”, the old text

2. Register with the MRF. Your registration is vital to our efforts, because it makes decision-makers aware of the multitudes of people who are suffering from this disease. Hopefully, we can interest politicians, if many of their constituents are affected. Your information will be kept confidential. To Register click here (link to OSU-CHS)

was changed to:

Email Advocacy@Morgellons.org if you have ideas for increasing awareness and raising funds for research, or if you want to get involved.

The link to the OSU registration also appeared on all previous MRF Newsletters, but was removed as of the August 2007 Newsletter.

So what’s going on? Why does the MRF no longer inform people about the OSU registration? I suspect this is because now that the OSU is no longer sharing the registration data with the MRF, the MRF no longer gets the email addresses of those people. Since the MRF seems much more strongly focussed on fund raising now (requesting $233,000 for research, probably by advisory board member Kilani’s Clongen Labs), they need as many email addresses as possible for money-raising efforts – especially new email addresses.

Perhaps it is also because the OSU registration page includes two links to the OSU Morgellons donation page, and one of the question you have to answer when registering is “Have you donated to Morgellons yet? (Y/N)“, followed by: “Click here to contribute to OSU Research on Morgellons“. Perhaps the OSU registration was just taking too much money away from the MRF.