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]

14 Responses to “The Changing Morgellons Research Foundation”

  1. Reasonable and level headed (as you used it) translates into criminally insane, to me!!!!!!!!!!

  2. The MRF’s website has got to be the most insane site I’ve ever read, with the exception of the Morgellons support forums. Because of the incohesive way the information is presented, it appears to me that several people have had a hand in preparing the site. It seems to be filled with contradictions. Someone, possibly Stricker, appears to be twisting things so that Morgellons appears to be AIDS. He’s had experience with the AIDS syndrome. He reportedly was caught lying on his research data in order to obtain a grant. The site seems to be saying that the Morgellons patients have a variety of illnesses. That’s something that we’ve said all along. The website is one lie and one twist after another. It’s clear to me that most, if not all, of the people that post on the Morgellons forums, as Morgellons patients, are quite delusional. DOP is not a thing of the past, and it has not been denounced by the CDC or the Kaiser Corporation. In my opinion, the Board of Directors of the Morgellons Research Foundation belong behind bars for exploiting mentally ill patients and soliciting funds for fraudulant purposes.

    Tall Cotton

  3. Okay, someone has taken over at the MRF. Check out the new case definition, and this from the FAQ.

    Morgellons disease is a placeholder name for what has been called Delusions of Parasitosis (or DOP) until recently by the medical profession. The label was created from 15th century literature describing only unusual hair or fiber growth on a child and devoid of the many other symptoms and signs we now know to be associated with the chronic illness. 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.

    Interesting developments.

  4. Hmm, 11,400 patient parameters, 400 data points per patient = 29 patients? Are these the same patients that Wymore was seeing?

  5. And “zoonotic Filaria” means parasitic worms from animals. Like hookworms.

  6. As it’s been from day one, that site is not constructed for anyone not suffering severe cognitive dysfunction!!!!!!!!!!!!!!!!! Hehehe, I’m about to have a stroke, looking at it. It’s good though. More evidence.

  7. I don’t get it. All of a sudden it’s formication and neurological problems from Filariasis and fibers from Actinomycosis? Who’s writing this stuff? It’s fascinating.

    It does not bode well for the MRF to be taken seriously.

  8. Michael, you’re joking, right? Do you think any of these patients who can’t take care of their mental health needs “get it”? The “morgellons disease” network has always talked their language for a damned good reason. Every last one of ‘em needs the heavy hand of the law to come down hard on ‘em, too.

  9. How many times has the MRF stated that Morgellons is an emerging infectious disease? Now, in a single paragraph, it calls Morgellons “an” illness and also “a full spectrum of illnesses”. They can’t have it both ways, but they seem to be trying to. We’ve said all along that the Morgellons patients have a wide variety of physical problems, plus some that are mental. Now, the MRF seems to be saying the same thing, and although it admits that they have cognitive disfunction, it won’t admit that the patients have delusional parasitosis. It seems strange that the MRF would attribute the fibers to Actinomyces israelii after Wymore’s claims that they withstood a temperature of 1400 degrees, and now it seems to have shelved its ideas about Agrobacterium. So, where is it going with this? is it panicing, and baling out, or is it simply trying to design this made up disease to please as many patients as it possibly can? It seems to be blaming the patients for self-diagnosing themselves with Morgellons, although the MRF is the reason for it, and at the same time wording things in such a way that the patients will think it agrees with the diagnosis and blames the medical community for misdiagnosing them with DOP, and, of course, forcing them to self-diagnose. Again, they seem to want it both ways. Stricker seems to be leaning towards AIDS and Harvey toward lyme coinfections, but it seems that they are trying to broaden the field to give themselves a safer position. In my opinion, it is insane, fraudulant, and highly exploitive. In my opinion, these people are criminals, and hopefully the CDC will see to it that this racket is busted and the criminals are put behind bars.

    Tall Cotton

  10. Chronic Lyme Disease is not recognized by the medical community as being a legitimate disease. Some quack doctors and nurses, however, diagnose their patients with Chronic Lyme Disease so they can prescribe antibiotics indefinitely. This requires many additional and unnecessary appointments, and some of these “so-called” Lyme Literate Doctors charge outrageous prices. They know that these patients, actually suffering from something else, will pay the price. Not only is this draining the patients financially, but the extended use of antibiotics is causing bacteria to mutate. This creates “superbugs” and renders the antibiotic useless, thus putting everyone at risk. This is also happening with Morgellons. It’s not a disease, or even a medical condition, yet some greedy and irresponsible doctors and nurses are taking advantage of their patients gullibility in the same way that they are with Chronic Lyme disease. In most cases, the patients that believe they have these non-existent diseases are mentally ill, and taking advantage of these patients is worse than criminal. What can be done about it? Hopefully the CDC will alert the proper authorities and see to it that these practicianer’s licenses are revoked and the doctors and nurses proscecuted.

  11. Many diseases leave residual toxins in the body. This can trigger an auto-immune disorder. Most people who have read the studies on morgellon’s disease can find links between one disease or another, but without causal evidence stating that one disease is the cause is fruitless.
    It is probably best to say that Morgellon’s is simply a breakdown in the way that the body normally acts, and seems to be related to previously having a disease, whether chronic or simply very severe in nature.

  12. iblieve birdmites and morgellons are the same thing

    this happened to me after trying to save some baby bird eggs bcuz the mother bird was DEAD. NO MATTER WHAT YOU DO THERE ARE THINGS CRAWLING ON YOUR SKIN.

    i have currently been scoping this out on a daily basis, since its happened to me and ive learned how these things are working. the cdc will not answer my phone calls doctors and derms are pushing me away. i believe i could be of some help if someone would listen to me .any responces would be greatly appreciated from one human being 2 another.

  13. Sandra, an infestation of bird mites can certainly make you be overly sensitive to itching. Bird mites are not Morgellons though. It’s just one of many possible causes of these symptoms.

  14. H E L L O , IS THERE ANYBODY OUT THERE WHO ACTUALLY CARES EVEN THOUGH THEY ARE NOT SUFFERING. I DONT SEE ANY SIGNS OF IT .

    i believe it to be true because they are in stages .the life cycle …look it up

    i would have a place heal up and they would lay eggs on another part of my body. the omish have helped tremendously though. but from what i experienced the skin condition thats hurting and killing people are birdmites ,birdlice,etc..and you have to get down to that last one.

    sorry, i dont mean to come off as rude be we (THE SUFFERERS) NEED TO BE LISTENED TO AND THEN UNDERSTANDING WOULD FOLLOW.ONE STEP AT A TIME.ONE DAY AT A TIME

    please reply

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