What would you do if someone did this to you?

[Th1onein]

My son had cystic fibrosis. About three years before he died, I began to study, very seriously, biochemistry, in an effort to save him. I made a call on a CF support group, for people who were interested in working with me. (My field is not science; we were all amateurs.) Several people answered the call. One was a political science professor from BYU.

On the day that my son died, I found an article that had information in it that I knew was the key to solving the mystery of the disease. I began to "shout it to the rooftops," and so did this BYU professor. I couldn't stop studying at that point; it was just something I had done for so long, I was on automatic pilot when my son died, and I continued. This prof from BYU took my work and published it without my permission and refused to give me credit for it. This was at a time when I had just lost my son and I was absolutely devastated.

I continued my study and I believe that I have found a systemic treatment for the disease. A lot of people followed my research and supported it, in many ways. The BYU professor clung to the first finding of my research, though, as if it was the answer to everything. She gave out some really bad advice to a couple of people, based on her misunderstanding of this research and ending up killing a young man. So, of course, the rest of us disassociated ourselves from her. She now has an internet group of her own, on which no one can post anything that disagrees with her understanding of the disease and her "treatment" for it. Anytime the subject of my research comes up, she attacks it vehemently, even though she knows very little, if anything, about it.

Of course, our group has just finished it's work, and the work has been published in a journal and on PubMed. We have a mailing list on the internet, for people to exchange research and to talk about it. Recently, since the work was published, we have had quite a few new people join our group, and they seem to be causing a lot of disruption. Strangely enough, some of their internet ID's were created on the very day that they joined our group. I don't like to censure the free exchange of ideas, but I am beginning to suspect that this woman is either some of these people herself, or has sent some of them, for the purpose of disruption.

What would you do, if you were in the same situation?

[mike_c]

1. hmmm, I can't offer advice-- I had similar shenanigans pulled on me...

...when I was a grad student (prof published my work without attribution). It happens. It's not right, but I suspect it's more widespread than many of us think. Your case sounds more extreme than my experience.

But the reason I replied to this thread was to ask for a link to a PDF of the paper. I don't have a specific professional interest-- it's not my field-- but I have a personal interest in the topic. Thanks in advance.

[Th1onein]

5. Here's the PubMed abstract

1: Med Hypotheses. 2006 Aug 23; Click here to read Links
A new model of cystic fibrosis pathology: Lack of transport of glutathione and its thiocyanate conjugates.

* Childers M,
* Eckel G,
* Himmel A,
* Caldwell J.

Share International Foundation, 1720 205th Pl NE, Sammamish, WA 98074, USA; University of Houston, Houston, TX, USA.

Many of the symptoms of cystic fibrosis are not explained by the current disease mechanisms. Therefore, the authors conducted an extensive literature review and present a new model of cystic fibrosis pathology, which is the culmination of this research. Understanding that the cystic fibrosis transmembrane conductance regulator (CFTR) is responsible for glutathione (GSH) transport, the authors hypothesize that mutations of the CFTR, which create abnormal GSH transport, will lead to aberrations of GSH levels in both the intracellular as well as the extracellular milieu. These alterations in normal cellular GSH levels affect the redox state of the cell, thereby affecting the intracellular stress protein, metallothionein. The authors describe how this disruption of the redox state caused by excess cellular GSH, will naturally prevent the delivery of zinc as a cofactor for various enzymatic processes, and how these disruptions in normal redox may cause alterations in both humoral and cell-mediated immunity. Moreover, the symptom of thick sticky mucus in these patients might be explained through the understanding that oversulfation of mucus is a direct result of elevated cellular GSH and cysteine. The issues of hyperinflammation, altered pH and the imbalance of fatty acids that are typical in cystic fibrosis are addressed-all of which may also be linked to disruptions in GSH homeostasis. Additionally, this new model of cystic fibrosis pathology, clarifies the relationship between the CFTR and the multi-drug resistance proteins, and the lack of cell-mediated immunity by predicting that the substrate of these proteins is a glutathione adduct of thiocyanate. Finally, a new therapeutic strategy by using isothiocyanates to rectify the GSH imbalance and restore the immune system is suggested for the treatment of cystic fibrosis patients.

PMID: 16934416

[mike_c]

6. thank you....

Ah-- now I understand why you chose your DU moniker.

[The Straight Story]

2. I'd bring out the gimp

Ban em if they are not contributing positive and worthwhile information to the topic at hand. Flame wars can be fought at alt.flame if they just want to whine and complain.

If there is something of value, warn them on delivery method, then reserve action for later.

[auntAgonist]

3. I don't know how you'd keep people from accessing your list

I suppose you could heavily password protect it.

I have a personal interest in your work and would love to read some of it. I probably wouldn't understand much of it ...

My deepest condolences on the loss of your son.

my stepson has CF.

aA

[politicat]

4. Change the rules of the forum and require real contact information.

Like a phone number, address or something else that can be independently verified (i.e. through a google search). I have free long distance; I'd happily make any calls you needed. These don't need and should not be public, but you can easily require them of members and new members. (I'd move the board at the same time that I made the rule change so that all members had to re-sign up.) Or require a $5 Paypal donation to post. Anything that verifies a person as real and associates a name, physical address and location with a member.

And it's a private board. Just like here at DU, the mods and admins can set rules about how certain topics are handled, and can squish discussion that is inappropriate and unacceptable or abusive or unverified by science (in your case.). You make the rules. You get to. It's your living room.

Also, contact BYU's biochem department head. What that prof did is plagiarism and is not only unethical, it is an express route to a loss of tenure. Anyone who steals research (and I'm assuming you can verify with your correspondence trail that you should have been credited in the paper she wrote) should not be allowed to continue that behavior, especially not at a fairly respectable scientific institution. (If it were Naropa or Bob Jones, I'd be less confident that you had a chance, but BYU does have a decent science program and is very strict about academic honesty.) As an academic and social scientist, that kind of behavior is utterly abhorrent to me. While yes, inadvertent dishonesty happens and should be handled with second editions, clarifications, and other formal types of corrections, this sounds like it has far surpassed an honest mistake. The academic in me says take her down. People that steal others' work are nothing but frauds, incapable of doing their own work and not to be respected.

[CoffeeCat]

7. Can you compare IPs?

Since you once corresponded with this BYU professor--do you still have emails that show her IP address? If so, could you compare those to the IPs on the mailing list? You might find a match.

I agree with the previous poster who said to require identifying information, for people who want to be on the mailing list. I think it's odd that there are "disruptors" on a mailing list for discussing scientific research. I understand that people might not always agree or diverging theories may arise. However, this isn't a Yahoo political board. I smell a rat because I think disruption like that seems odd--given the subject matter and the people involved.

It's always good to be for the free exchange of ideas, as you said. However, sometimes your peace of mind is more important. Given everything you've endured during the past several years--I think protecting yourself and being kind to yourself should be priority one. Setting some boundaries is ok. Telling people that your discussion list is NOT a debate board and having some ground rules is a good idea. The disruptors on your list may or may not be affiliated with Ms. BYU. However, if disruptions make you think about her--and the hurt she caused--then why not eliminate that type of discussion on your list.

I wouldn't hesitate to let members know that your discussion list is for discussing topics a,b,c--and that although we might not always agree--we're not going to go down paths d,e and f--and if someone wants to go down those paths then another board/mailing list might suit their needs better.

Best of luck to you. I admire you for the amazing work that you've done, and for being so strong for your child. I find it extraordinary that you don't have a scientific background, but you were able to do this amazing research that sounds so promising. I can't say that I understand what you have been through. I have two children, and I can't imagine losing them. It's hard to go there. I can understand how difficult all of this must be--and I only hope that if I were to lose a child, that I could be half as courageous and graceful as you.

Good luck with your continued research. Take care of yourself. Keep us informed and let us know how things are going, if you feel comfortable doing so. :)