What is your approach/"protocol"?

Awwww, Seaotter, that's so hurtful. You don't want me to think that my alternative to the alternative voice isn't welcome here, do you? Or do we only tolerate alternatives that we agree with? Tsk tsk tsk.

Luna - I am tuned into your frequency as well. I won't waste my good solar batteries on anyone who comes around just to be mean and nasty - no matter how many alias they might have. I don't get how anyone would draw some sort of demented joy out of this behavior, but I suppose we can't all be nice. Like the saying goes about bullies - ignore them and they will go away.

Now back to our regular programming! 

You should definitely get outside and walk, Luna. I appreciate doing that so much more these days. It is brisk where i am now and it feels so good to get out there and breathe in the fresh air. If you are surrounded by wildlife and beauty - you will enjoy it so much more!

Years ago I met a woman on Paltalk who used to come to our room and verbally abuse us. One day I sent her a p.m. asking why she was so cruel and she told me that it was her job. She said that she was writing a research paper on stress and how people reacted to it. Her job was to go into various rooms to instigate the participants and document their reactions. For some reason she confided in me and even gave me the link to her website. Sure enough she worked in the mental health field, can't remember her exact title. 

When I was dx'd I read a post on another board which warned us to be careful because the boards were infiltrated at times by people who submit provocative posts in order to document our responses to stress.

I hope this is the case here. Even a misguided attempt at obtaining knowledge is far better than just being plain old mean. 

Anom, Good one! 

Words of wisdom, Viv, words of wisdom!

Additional Information:
abstract references cited by index terms collaborative colleagues

Tools and Actions: Review this Article
Save this Article to a Binder Display Formats: BibTeX EndNote ACM Ref

DOI Bookmark: 10.1016/j.chb.2004.12.003

ABSTRACT
The explosion of use of Internet-based communication for health requires attention to the ways survivors of specific diseases and those close to them participate in using resources. This research focuses on two cancer groups - breast and prostate - and how they use WebMD asynchronous bulletin boards. Four hundred and eighty two messages were coded for communicator (survivors, spouses, others) and content of messages. Most common communicators were survivors, but the two groups differed in percentages of communicator. Of four main categories of content - medical/treatment, intimacy/sexuality, emotional expression, and support - most common were support and medical/treatment. The groups differed significantly on those four categories, with breast cancer more support-dominated and prostate more medical/treatment-dominated and more intimacy/sexuality messages. There were no group differences in emotional-toned vs. social support seeking vs. providing support, or positive vs. negative emotions expressed. Generally, there was considerable commonality, and the differences found primarily supported gender-specific notions of communication and need.

REFERENCES
Note: OCR errors may be found in this Reference List extracted from the full text article. ACM has opted to expose the complete List rather than only correct and linked references.

Alexander et al., 2003.
Help is at your keyboard: support groups on the Internet. In: Frey, L.R. (Ed.), Group communication in context: Studies of bona fide groups, Erlbaum, Mahwah, NJ. pp. 309-334.

American Cancer Society, 2004.
American Cancer Society. (2004). Cancer facts and figures: 2004. Atlanta: American Cancer Society.

Barrera et al., 2002.
Do Internet based support interventions change perceptions of social support. American Journal of Community Psychology. v30. 637-654.

Coreil and Behal, 1999.
Man to man prostate cancer support groups. Cancer Practice. v7. 122-129.

Davison et al., 2000.
Who talks? The social psychology of illness support groups. American Psychologist. v55. 205-217.

Deans et al., 1988.
Cancer support groups: who joins and why. British Journal of Cancer. v58. 670-674.

Du Pre, 2000.
Communicating about health: Current issues and perspectives. Mayfield, Mountain View, CA.

Fernsler and Manchester, 1997.
Evaluation of a computer-based cancer support network. Cancer Practice. v5. 46-51.

Fox and Fallow, 2003.
Fox, S., Fallow, D. (2003). Internet health resources. Washington, DC: Pew Internet and American Life Project. Available from: www.pewinternet.org/pdfs/PIP_Health_Report_July_2003.pdf. Accessed 08.11.2004.

Gackenbach, 1998.
Psychology and the Internet. Academic Press, San Diego.

Gray et al., 1997.
Interviews with men with prostate cancer about their self-help group experiences. Journal of Palliative Care. v13. 15-21.

Herring, 1996.
Two variants of an electronic message schema. In: Herring, S.C. (Ed.), Computer-mediated communication: Linguistic, social and cross-cultural perspectives, John Benjamins, Philadelphia. pp. 81-108.

Holland and Lewis, 2001.
Human side of cancer. Quill, New York.

King and Moreggi, 1998.
Internet therapy and self-help groups - the pros and cons. In: Gackenbach, J. (Ed.), Psychology and the Internet, Academic Press, San Diego. pp. 77-110.

Klemm et al., 2003.
Online cancer support groups: a review of the research literature. CIN: Computers, Informatics, Nursing. v21. 136-142.

Klemm et al., 1999.
Cyber solace: gender differences on Internet cancer support groups. Computers in Nursing. v17. 65-72.

Michelson, 1997.
Seeking social support: parents in electronic support groups. In: Kiesler, S. (Ed.), Culture of the Internet, pp. 157-178.

Monahan-Martin, 1998.
Males, females, and the Internet. In: Gackenbach, J. (Ed.), Psychology and the Internet, Academic Press, San Diego. pp. 169-197.

Muncer et al., 2001.
Structure of newsgroups giving social support. Cyberpsychology and Behavior. v3. 1017-1029.

National Research Council, 2000.
National Research Council. (2000). Networking health: Prescription for the Internet. Washington, DC: National Academic Press.

Owen et al., 2003.
Investigation of the effects of gender and preparation on quality of communication in Internet support groups. Computers in Human Behavior. v19. 259-275.

Preece and Ghozati, 2001.
Experiencing empathy online. In: Rice, R.E., Katz, J.E. (Eds.), The Internet and health communication, Sage, Thousand Oaks, CA. pp. 237-260.

Rice and Katz, 2001.
Ronald E. Rice , James E. Katz, The Internet and Health Communication, Sage Publications, Inc., Thousand Oaks, CA, 2000

Salem et al., 1997.
Mutual self-help goes online. Journal of Community Psychology. v25. 189-207.

Sullivan, 2003.
Gendered cybersupport: a thematic analysis of two online cancer support groups. Journal of Health Psychology. v8. 83-103.

Wallace, 1999.
Patricia Wallace, The Psychology of the Internet, Cambridge University Press, New York, NY, 1999

Weber et al., 2000.
Exploring the efficacy of support groups for men with prostate cancer. Geriatric Nursing. v21. 250-253.

Winefield et al., 2003.
. Australian Journal of Psychology. v55. 30-34.

Wright, 2002.
Social support within an on-line cancer community: an assessment of emotional support, perceptions of advantages and disadvantages, and motives for using the community from a communication perspective. Journal of Applied Communication Research. v30. 195-209.

CITED BY
Constantinos K. Coursaris , Ming Liu, An analysis of social support exchanges in online HIV/AIDS self-help groups, Computers in Human Behavior, v.25 n.4, p.911-918, July, 2009

INDEX TERMS
Primary Classification:
J. Computer Applications
J.3 LIFE AND MEDICAL SCIENCES
Additional Classification:
H. Information Systems
H.1 MODELS AND PRINCIPLES
H.1.2 User/Machine Systems
Subjects: Human factors
H.3 INFORMATION STORAGE AND RETRIEVAL
H.3.5 On-line Information Services
Subjects: Web-based services

General Terms:
Design, Human Factors, Management

Keywords:
Cancer, Gender, Health, Internet, Support

Collaborative Colleagues:
Thomas O. Blank: colleagues
Margaret Adams-Blodnieks: colleagues

The ACM Portal is published by the Association for Computing Machinery. Copyright © 2009 ACM, Inc.
Terms of Usage Privacy Policy Code of Ethics Contact Us

Useful downloads: Adobe Acrobat QuickTime Windows Media Player Real Player

Obtaining knowledge using cruelty to cause stress among people who are seeking support for an illness just doesn't seem right either. Stress is the last thing we need as we all gather in this community to reduce our fears and gain knowledge. I don't like it! Although, I don't think that is the motivator here.

There are ethical guidelines in psychology and social psychology in experiments. I will bet you this behavior is in violation of those guidelines. It may be professionally "actionable" in getting a department head who okayed this research to be thrown out of the APA, or even legally actional as the intentional infliction of psychological distress.

Since psychologist Stanley Milgrim did his experiment on getting people to think they were torturing others in the 1960s, there has been a crackdown. NPR even did a program on this.

Anomdenet: OH! I love this Troll spray........

Efflorescing, I wonder who you contact if you hear about that kind of unethical study????

"Validating one modality of healing does not invalidate another modality of healing"

Unfortunately, I think for the majority of folks, it does. Don't lose sight that it is quite a blessing if your mind is open enough to consider fresh ideas.    

The Twa's posts reveal a very black and white attitude - but  you are seeing things in living color... (as your avatar might clue us in, LOL.)      

Vivre is right: I, too, look forward to hearing more inspiring words from you, loneplume.

and Pill, you have hit the nail on the head, when you say that "Unfortunately, I think for the majority of folks, it does. [talking about the fact that validating one modality of healing does not invalidate another modality of healing]. Don't lose sight that it is quite a blessing if your mind is open enough to consider fresh ideas". 

Below is the course of action someone chose to pursue. Of course, this person would like all of  us on this Board to go the same way she chose to go. But I am sure you all will agree that this is out of the question for most of us. Also: my take on this is that time will tell us, soon enough, if these bombardments were the right way to stay alive long term:

......I had 4 rounds of dose dense AC, 12 weeks of Taxol/Herceptin, and 13 additional treatments of Herceptin. My staging was "clinically" 2B or 3A. Unknown because I did neoadjuvant therapy. I also had a lumpectomy + AND, and 33 radiation treatments..... 

Plume, what a lovely painting. Your kind and generous soul comes right through.

Did everybody see Plume's painting?

http://community.breastcancer.org/member/93010/profile

Welcome to the alternative section loneplume.  Many of us here are survivors of early stage bc, doing what we believe is within our power to prevent a recurrence, to live the most vibrant lives possible. I read your profile and I'm so sorry you lost your siblings in rapid succession, and now your stage iv dx.  And through it all, you painted such a beautiful painting.  I'm glad you found your way here.  I think you'll find a lot of like-minded ladies here.  Some who come here aren't, and yes there is an ignore feature.  You just click on that person's profile and to the right you'll see an option 'ignore this poster'.  It's easy to reverse if you ever want to turn it off. 

WLL-I think the first thing you need to do is detox. Find a doctor to help you do this. I went to a chiropractor, but there are ND's who can help you through it too. Even though I changed my eating to good nourishing food, and was exercising daily when I finished rads, I just felt like i wanted to get all the stuff out of me from treatments and kill any damn cancer cell that might be lurking. You have been though a lot with chemo and you need to build up your immune system and your cells. My chiro gave me a liver cleanse called advaclear. You combine it with a pure diet to give the liver a chance to recoup since it has been working so hard. She tested my Vit D level which was very low, so she started me on 6000 IU Vit D. It still took me almost a year to get that number up, I also started to up my vit C to over 1000 mg a day. And I started selenium, mag, tumeric, and a couple of others. I do tend to change things. I eventually added iodine. Check out the iodine thread for all the info on that and the relationship to bc.Oh, and get on a minitramp and start bouncing. Get the lymph flowing to help filter all the gunk out. Take it one day at atime.  I keep reading and changing things constantly. It may seem overwhelming now, but eventually it all just becomes a habit, an enpowering habit.

Sheridan, what protocols have you done so far?