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.

11 Responses to “MRF Halts OSU Registration”

  1. It is very unlikely that OSU’s Institutional Review Board, which must approve all human subjects research, would permit sharing of patient data with an advocacy organization that was not bound by HIPPA (Health Insurance Portability and Privacy Act). MRF could ask that patients contact OSU, but OSU can’t take their names directly from MRF, since that would also violate HIPPA. Overall, it is probably a good thing for MRF to get out of the patient registry business and leave it to professionals.

  2. Some Guy,

    I’m not 100% sure, but I don’t think OSU has hippa obligations because they’re not medical practitioners, only researchers…. However, their confidentiality is probably bound by IRB human subjects approval.

  3. Wrong OSU

  4. Oops, I assume it would be roughly the same though.

    The OKState HIPPA site seems more focused on patients rather than research subjects:

    http://centernet.okstate.edu/compliance/privacy_practices.cfm

    Considering the OK State morgellons page explicitly states that information will not be shared, I think that pretty much means they can’t give it (meaning personal information, email addresses) to the MRF.

    I’m suspecting that patient information gathered using an online form is a bit unusual, and the lawyers might not be sure exactly if it constitutes protected health information (PHI). I suspect it does.

  5. All along, I’ve thought, that anyone thinking they have “morgellons disease” could save everyone a world of time, trouble, and MONEY, by signing releases to have all their medical records and reports openly reviewed. I know I’d readily do it, if I thought I had a new disease. I know that’d be step one, if I were a “researcher”, too. It’s all so odd to me.

  6. As of Sept 7th, it now reads:

    Note:
    The MRF registration link is currently being updated. We will activate the registration link as soon as possible.

    Right. The link was REMOVED four weeks ago. Presumably they are eventually going to implement their own registration database.

    But why not just provide a link to the OSU database?

  7. I see a lot of conjecture, and more than a little insinuation. Why not ask the MRF and OSU about this, or have past discussions or criticism already engendered an atmosphere of mutual distrust? Even a dishonest or evasive reply can supply information. I think most people reading this are aware of the difficulties involved in any paradigm shift, and this doesn’t even qualify, its just SOME sort of condition or range of conditions related or unrelated which remains presently misunderstood and mostly unknown. If DOP is a clear diagnosis, what accounts for the commonality of this particular delusion? Can this be proven?
    It is quite understandable to seek certainty over ambiguity, so an established diagnosis is likely even in light of contradictory evidence. There are numerous confounding issues here of pathology, zoology, individual and mass psychology, etc. Skepticism is a rational response to all information, regardless of the credentials attached, so if there is any genuine concern for finding the truth, it makes sense to ask hard questions, but making too many assumptions about the answers will leave you on the wrong side of history. The potential harm being done by erratic or ill conceived reactions is something of grave concern, however, this response has apparently been provoked in many by frustration with the helplessness or unwillingness of the medical community to respond. The evolution of the CDC response to this condition is equally baffling as the MRF. Regardless, this phenomenon is instructive to all of us concerning our own reason and perception, let us hope these lessons are not wasted.

  8. Morgellons is REAL, fibers are unknown to modern day medicine but they are not a delusion – That’s a fact Jack

    If the fibers were Kleenex fibers, the FBI would have been able to find a match with the at least 1 of the 10,000+ “known” fibers stored in their database. If you don’t believe me look it up on the internet. Welcome to the XFiles.

    Here is a link to a picture of a human hair & root which is infected with fibers, please try and explain how that happens…

    http://www.bme.ogi.edu/biomedicaloptics/jacques/fungus/ClevPics/200xInfectedHairEnsn_110BA5.jpg

    Unexplained Dermopathy (aka “Morgellons”) > CDC Investigation
    http://www.cdc.gov/unexplaineddermopathy/
    http://www.psychologytoday.com/articles/pto-20070227-000003.html

    My mother who is a retired microbiologist did a “Fiber Study Summary Report”, here is a copy of her obser
    Morgellons Fiber Study Summary
    - Jenny H******, Clinical Microbiologist Scientist

    Date: Monday, December 13, 2004 10:32 PM
    Following are microscopic observations of specimens of unknown fibers
    taken from four individuals suffering from a condition known as
    Morgellons disease.
    The participants are:
    (full names indicate participants who have granted full permission to publish)
    Jamie – who lives in San Francisco, California
    Cindy G. Casey, RN – an intensive care nurse living in Sausalito, California
    Murphy – an artist & musician living in Oakland, California
    Wendy E. Tripp – a veterinary technician living in San Jose, California
    All of these cities are in the San Francisco Bay Area in Northern California.
    The descriptions are using a light microscope (Nikon LABOPHOT-2), 400x
    lens, and a Leitz fluorescent microscope (LABORLUX D), using an ultraviolet light
    source with a 330 to 380 um excitation filter and a 420 um barrier filter.
    The fibers were not observed to contain septa.
    ___________________________________________________________________
    Jamie, collected fibers from her calves in March, 2004.
    I teased the fibers, and mounted them on a glass slide in sterile
    saline (PSS). Using the 400x lens (light microscope) the following were
    observed:
    Red fibers 48.64 microns wide
    Clear fibers 23.04 microns wide
    Black fibers 28.16 microns wide
    Clear slender fibers with prong like structures 7.68 microns wide
    Red to red & black fibers with an internal structure that resembled
    ladder-like rungs, 17.92 microns wide
    Her sample also included hair, which measured from 51.2 to 74.24
    microns wide. Looking at her sample of collected fibers before teasing them apart,
    some appeared to have a thick black speck in the center of the long strands of fibers.
    I mounted the speck directly on a glass slide (I had to cut the long fibers to separate
    the speck from the “mass” of fibers), added saline and a coverslip, and under 400x
    it was comprised only of extremely tangled black fibers.
    I then examined the sample described above using the fluorescent
    microscope (unstained in saline). The majority of the fibers were
    extremely bright aqua autofluorescent. The black and red fibers did
    not autofluoresce.
    I then made a preparation of fibers in 20% KOH and Calcofluor stain (a
    stain used to observe fungi…yeast and hyphal elements of fungal organisms
    fluoresce bright apple green using a fluorescent microscope in the ultraviolet range).
    The fibers did not pick up the Calcofluor stain…they were the same
    bright aqua autofluorescent color as observed in saline, along with the
    black and red fibers as observed above. I also observed some hair in
    this preparation, which did not fluoresce.
    ____________________________________________________________________
    Cindy and her husband came to my hospital lab on August 12, 2004 and I
    collected a very small sample from a skin lesion on her arm. I
    cultured the material from the lesion using fungal culture media
    (Sabouroud dextrose agar, Mycosel agar, and BHI agar with blood and
    antibiotics), incubated at 30 degrees Celsius for four weeks. The
    result was negative for fungal growth, with a light amount of skin
    bacteria observed. There was not enough specimen for microscopic
    examination.
    Cindy brought additional skin lesion samples for a repeat fungal
    culture and microscopic examination on August 31, 2004. I cultured one sample using
    fungal culture media. The culture was also negative for fungal growth at four weeks.
    The same sample obtained on 8/31/04 was observed following teasing in
    saline as described above using the light microscope to have:
    Clear fibers 12.8 microns to 20.48 microns wide
    Blue fibers 15.36 microns wide
    Using the fluorescent microscope, the fibers showed all bright aqua
    autofluorescent fibers with rare black non-fluorescent fibers observed.
    Cindy also gave me a sample that had been collected on August 30, 2004
    for microscopic observation. Using the light microscope I observed:
    red fibers 15.36 to 17.92 microns wide
    blue fibers 30.72 microns wide
    clear tubular fibers 7.68 microns wide
    clear ribbon-like fibers 15.36 microns wide
    black fibers 12.8 microns wide
    In addition, I found rare spore-like structures that were football
    shaped, 12.8 microns long, some of which had a septate-like division across the center.
    Also found were very rare structures slightly resembling the asymmetrical spores of
    Alternaria species (a fungus)…these were 48.64 microns long
    (Alternaria spores are 7 to 10 microns wide and 23-34 microns long).
    These structures were both amber colored.
    I also observed needle-like structures resembling crystals in this sample.
    ________________________________________________________________________
    Murphy sent me prepared microscopic slides of fibers from several skin
    lesions. Using the light microscope observed were in summary:
    blue fibers 23.04 microns wide (some of which were ribbon-like)
    red fibers 12.8 microns wide
    black fibers 23.04 to 30.72 microns wide
    clear fibers 15.36 microns wide
    large clear fibers 33.28 microns wide
    Using the fluorescent microscope, each sample autofluoresced bright
    aqua blue, with darker fibers non-fluorescing.
    _______________________________________________________________________
    Wendy sent two samples. The first sample, fibers from her torso, were
    collected on September 29, 2004. Using the light microscope, these showed:
    black ribbon-like fibers, 25.7 microns wide
    clear tubular fibers 12.8 microns wide
    blue fibers 15.36 microns wide
    red ribbon-like fibers 12.8 to 25.6 microns wide
    brown fibers with ladder-like rungs 12.8 microns wide
    brown fibers with prong-like structures along the sides 3.84 to 10.24
    microns wide
    The above sample had a predominance of the black fibers described above.

    A second sample (also from torso) collected on October 7, 2004 showed
    the same types of fibers as described above with the addition of:
    brown fibers with ladder-like rungs 33.28 microns wide
    Using the fluorescent microscope, observed were bright aqua
    autofluorescent fibers, with black and red non-fluorescing fibers.
    ______________________________________________________________________
    In summary:
    There were many similarities in fibers from all four individuals, both
    in size and color. All samples showed bright aqua autofluorescence using the fluorescent
    microscope, with red and black non fluorescent fibers.
    The fibers collected from these four individuals from different
    counties of the San Francisco Bay Area are so similar to each other
    that the causative agent may be epidemiologically the same.
    Respectively submitted,
    Jenny H******
    Clinical Microbiologist Scientist
    Marin General Hospital
    Greenbrae, California

    Jenny H. (mom) told me that I tested postive for Morgellons based on her discussion about the fibers descriptions with Mary Latieo. Mary told Jenny that her descriptions matched the descriptions of fibers that had been reported by the people registered with the Morgellons Research Foundation. I didn’t know the name for my illness until I saw a newsbrief about “Mysterious Skin Disease, Striking Bay Area Residents” on KTVU Fox Channel 2 news in Oakland, CA. I was referred to the Morgellons Disease Foundation by KTVU, I did not “find” Morgellons, or do a self diagnosis. I saw a Dermatologist at San Francisco General Hospital, who collected a sample of fibers which I pulled out (not dig, or use tweezers) of my legs by gently rubbing them. I was treated with a special dandruff shampoo prescription, which I was instructed to use for washing my entire body in hopes of treating a fungal type of infection. The shampoo had little or no effect. I returned for my follow-up which was with another Dermatologist at SFGH. She told me that the fiber sample collected showed no growth in 29 days. I wondered why they were watching for the fiber to grow since it is my belief that the fibers do not live outside of our bodies (if they are alive in the first place). I said okay, they don’t grow, but what are the made of? I was told that the skin lab doesn’t test for what the fibers are made of. The lady Dermatologist asked me if I showed my mothers fiber study report to a Psychiatrist. Why would a Psychiatrist be interested in a report on the fibers from a Microbiologist? I did talk to a Psychiatrist about Mogellons disease, and how it has been effecting me. The Psychiatrist was very sympathetic and wished me the best of luck in getting the medical treatment that I needed. I still haven’t been able to get proper medical treatment. I did get a prescription for anti-depressants from a Dermatologist at Kaiser Permanemte in San Francisco, CA. Since when do people have to prove that they aren’t imagining the things they can see and feel in their own bodies? Since when are doctors not performing all possible tests (as recommended in the medical journals) before assuming people are delusional, and since when are medical doctors allowed to prescribe Psych med? I don’t have lessions with fibers protruding out of them, but I have pulled fibers out of every part of my body including the bottom of my feet. The people who claim to have Morgellons have many similarities between one and another, but there is only one thing that we all have in common and that is the fibers which no one can ever say is a delusion. What is wrong with our world today? Wake up, and smell the coffee America, before you get burned. I believe what I see, but I also believe what I feel. There isn’t a doctor in the world who could know my own body better I do…

    Ever hear about no-seeums? Look it up, No-SeeUms are real, even though you don’t see Um. I know someone who got to experience no-seeums personally in Hawaii, she has the fibers too. I sent a sample of the fibers that I saw come out of this lady to my mother, they matched the other fibers. The fibers don’t match any of the 10,000 + known fibers according to the FBI, look it up on the internet, and face reality.

    Thanks for letting post on Morgellons Watch.
    JulieK_SFCA

  9. Julie, I’ve discussed your Mother’s study before. The most interesting thing about it is the conclusion:

    The fibers collected from these four individuals from different
    counties of the San Francisco Bay Area are so similar to each other
    that the causative agent may be epidemiologically the same.

    But she describes widths of from 12 to 48 microns, colors being red, blue, brown, black and clear, and the shapes being ribbon-like, tubular, laddered, or pronged. Some floresced and some did not. The study point mostly to the fiber all being different, and not the same. How can a fiber “match” when there are this huge range of possible types of fiber?

    You are not imagining the fibers, they are obviously real. But there are many places fibers can come from. We are literally surrounded and coated by fibers in the form of dust. They float through the air, they come off our clothing. They are hard to see, so it’s easy to get the idea that they are coming out of your skin. You can even mistake small hairs for fibers. There are lots of fibers. Try to find some fibers that did NOT come out of your body (try just wiping your monitor screen with a kleenex – you’ll see some short dark fibers, just normal dust, but compare them to your own fibers)

    I hope your health improves. Try to work with your doctors.

  10. Sorry to hear you have been infected. Morgellon fibres come from chem trails, no such thing as con trails these days, if you can see it its real. Wake up to the reality that there is an intelligence behind this, and if that means you have to re-evaluate your reality, that is a start.

    By the way, somebody found a cure on this link:
    http://www.alien-earth.org/forum/aitem.php?message=2228&show=0807&page=29

    Chem trails typically carry Barium Oxide & Aluminum Oxide to create clouds, and morgellion fibres for human depopulation.

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