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:
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.
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.