Tuesday, January 15, 2013

Happy New Year, The Addiction Model For Eating Disorders and a Much-Belated Hello!

Wow, I am so behind on here! :/  I have too many damn websites now! *headdesk*

Here are a few of my recent vlogs pertinent to the ED Community:

HAPPY NEW YEAR! <3  [The daily vlog thing, I've been doing but haven't strung them together to publish! Ugh, maybe I'll get to that, maybe not... :/  Ah well, I love you guys! ^_^ ]:

This is a vlog regarding the Addiction Model for Eating Disorders.  I share some research and my personal thoughts.

Monday, September 10, 2012

Saturday, August 25, 2012

My Video re: New Study: Pro-Ana Sites *HELP* Anorexics & Those w/ Other Eating Disorders?!

Published on Aug 24, 2012 by
A study published in "Health Communication" [professional journal] earlier this month indicates that ProAna Sites HELP many with eating disorders and may even be crucial in their path to recovery!
Much like the French-led ANAMIA Study did when published results showed evidence of positive outcomes in ProAna Community participation [and the U.S.-led Peebles and Wilson Study thereafter], this news is turning the world on it's head. The news stories are countless now: Every major agency has something to say about this groundbreaking new study.
The ProAna Movement has been a topic rife with high controversy since 2001, when the first wave of mass media attention -- and immediate, passionate, vehement condemnation -- began. Why the controversy? Until recently, the only studies conducted on ProAna Sites were in the form of content analysis. Front-page material has been erroneously interpreted by outsiders as being taken literally by participants in ProAna Communities. The Movement has been said to glorify and promote eating disorders; to recruit vulnerable youth to embracing ED's as a "Lifestyle"; denying that ED's are genuine illnesses; and/or denying that ED's are serious and Life-threatening. ED Awareness groups have adamantly opposed and campaigned hard to have such communities expunged from the Internet, alongside widespread Media condemnation. Such intense political pressure ultimately resulted in two waves of mass-censorship.
In 2008, France formally banned ProAna websites outright, imposing a steep fine and possible imprisonment of anyone found to own a ProAna Site. Here in the U.S., Facebook, Tumbler, Pinterest and similar social networking sites have implemented policies which ban ProAna content outright under the umbrella of "Self-Harm."
In recent years, more authentic data has been amassed -- rather than outsiders looking in, trying to make sense of the material found on these sites, those within such communities are speaking up; speaking out and sharing about the true meaning of the "Lifestyle" Anthem [written as an empowerment strategy and rejection of victim mentality in the face of a potent, insidious, devastating and incurable chronic illness; fatal in 20% of cases and VERY difficult to treat] and what ProAna is actually about [i,e., unconditional ED support outside of the rigid censorship seen in Conventional Recovery Communities].
So, what really goes on in ProAna Communities? Two notable studies preceded the one mentioned in this video: The Peebles and Wilson study here in the U.S., and the groundbreaking ANAMIA Study, conducted in France, which looked at Eurpoean ED sufferer experiences with ProAna support sites online. The evidence collected in the past few years clearly indicates that these communities are not the horrifying threat they were purported to be for the majority of the past decade -- and is actually *helping* people on the path to recovery.
FULL CITATION: http://www.unboundmedicine.com/medline/ebm/record/22873763/full_citation/Comm...
Title Communicating Stigma: The Pro-Ana Paradox.
Author(s) Yeshua-Katz D, Martins N
Institution a Department of Telecommunications , Indiana University.
Source Health Commun 2012 Aug 8.
Abstract This study explores the personal experience of pro-ana bloggers, members of an online community for people with eating disorders. Using Erving Goffman's work on stigma, this study explores the motivations, benefits, and drawbacks of blogging about a stigmatized mental illness, as taken from the bloggers' own perceptive. We conducted 33 interviews with bloggers from seven different countries via phone, Skype, and e-mail. Participants were motivated to blog because they found social support, a way to cope with a stigmatized illness, and means of self-expression. Participants described blogging as a cathartic experience and perceived the social support they received from other members of the pro-ana community as a benefit. The fear that the eating disorder will be revealed if the blog is exposed and the concern that the blog encourages disordered eating were the perceived negative consequences of maintaining such a blog. Thus, blogging about anorexia serves to both alleviate and trigger anxiety about living with this stigmatized illness. Recommendations for future research are made.
Language ENG
PubMed ID 22873763

LINK TO FULL IU INTERVIEW ARTICLE: http://newsinfo.iu.edu/news/page/normal/22967.html
IU researchers interview pro-anorexic bloggers for groundbreaking new study
Primary motivation of many was to seek social support and deal with stigma, not promote a 'lifestyle'

Aug. 20, 2012

Friday, August 24, 2012

New Study: Pro-Ana Sites Actually HELP Participants!

8.20.12:  It is with great joy that I bring this news:  An Indiana University study published this month in Health Communications shows that participation in a ProAna Community actually *benefits* participants!  Those of us who are veterans of the Movement know this well, but this is a cause for celebration: At last, beneath the detritus of sensationalist media hype, the Voices of the Movement have been heard:  We are here to support one another in Living with ED's -- NOT to recruit, promote, deny or glorify pathology!

IU researchers interview pro-anorexic bloggers for groundbreaking new study

Primary motivation of many was to seek social support and deal with stigma, not promote a 'lifestyle'

Aug. 20, 2012

BLOOMINGTON, Ind. -- A groundbreaking new research study from Indiana University suggests there may be benefits to the controversial activities of "pro-ana" bloggers, the online community for people with eating disorders.

Most of the 33 bloggers from seven countries interviewed for the study, which has just been published in the journal Health Communication, said their writing activities provide a way to express themselves without judgment, which the authors believe can be crucial to their treatment.

"We don't know what are the effects of participating in this community on health," said Daphna Yeshua-Katz, a doctoral student in telecommunications in the IU College of Arts and Sciences. "But we do know that the current therapy for eating disorders is not effective."

"These communities are providing support, albeit supporting an illness that may result in someone's death," added Nicole Martins, an assistant professor of telecommunications at IU. "But until they're ready to go and seek recovery on their own terms, this might actually be a way of prolonging their life, so that they are mentally ready to tackle their recovery process.

"From the outside looking in, this looks like a really disturbing community, but I think that the fact that these women are able to find support from one another and find a place where someone understands what they're going through is a really good thing," Martins added.

They acknowledged that the study findings are different from media coverage and other research about the pro-ana community.

The National Association of Anorexia Nervosa and Associated Disorders in 2010 reported that eating disorders affect more than 11 million people in the United States alone. Anorexics lose between 15 and 60 percent of their body weight and are susceptible to osteoporosis and heart ailments that can lead to death. It is viewed as a mental illness.

Little is known about the "pro-ana" online community because of the closeted and secretive nature of its members. The IU study is believed to be the first one to focus on interviews with the bloggers. Previous research in this area has centered on content analysis of what these people, mostly women with the disorders, are writing.

The researchers reached out to 300 bloggers and received a 10 percent response -- a statistically significant response. Both men and women with eating disorders were approached, but only women participated. Participants ranged in age from 15 to 33. Most were attending high school or college, and all lived in countries where anorexia is most common. About two-thirds lived in the United States.

Yeshua-Katz said many bloggers express themselves through song lyrics, music and photos that they call "thinspiration," which are very controversial. Complaints from eating disorder support groups have led Internet service providers to shut down pro-anorexia websites, but the site administrators and bloggers have remained resilient.

"They use the blogs to look for support and understanding, but at the same time, the content they display is something that for us -- people who are not sick -- is very disturbing," she said. "Studies show that people with eating disorders are stigmatized. Therefore these bloggers are looking for a place to vent out and express themselves without judgment of others."

Yeshua-Katz, the lead author on the paper, frequently researches how marginalized people are mediating their stigma through social media.

"The results revealed that the answers to why individuals are attracted to pro-ana sites have little to do with the need to share a broad philosophy or outlook and may stem from the desire simply to belong to a safe community of individuals with similar experiences," the researchers wrote in the study.

Their primary motivation for blogging was to seek social support. Most bloggers started publishing because they did not want to feel alone and were interested in finding others like themselves. They described interactions with family and friends as stressful "because they lack the understanding of their situation, while online they receive support constituted with sympathy, understanding and encouragement."

About half of the bloggers also said self-expression and the need to cope with social stigmas were other motives. When asked to give an example of how blogging might help them cope with stigma, six respondents answered that blogging offers them a different reality.

The majority of the sample reported that blogging about their illness improves their mood, and they found relief through their writing. The support they found was seen as unconditional.

"They receive encouragement when they post about their weight loss success and comfort in bloggers' comments when they fail in such efforts. Moreover, when a user wants to stop self-harm behavior or go into recovery, the community supports her choice too," the researchers explained.

"Our participants perceived the support within their ED community to be stronger than the support they received for their so-called strong ties to their offline life," they said, adding that eight bloggers reported meeting other community members in person.

In medical literature, a patient's decision to find support is seen as a good predictor of compliance and treatment leading to a cure.

Nearly 20 percent of the women interviewed for the study indicated that they were in the process of going through recovery from the illness. One respondent, who was in recovery, said that her blogging activities "gave her the skills to talk about her illness in the recovery process."

Of the 33 women interviewed, 27 defined their eating disorder as a mental illness and six said it was a coping mechanism. Contrary to previous research based on content analysis of the blogs, only three of those interviewed called anorexia a "lifestyle."

"In other words, people living with eating disorders are not purposely making unhealthy or health-compromising decisions. They are trying to find the best way they can to live with this disorder," the researchers wrote.

"I think that's encouraging that a majority don't look at it as a lifestyle," Martins said. "The silver lining is there that if they realize that it's a disease, then maybe they'll eventually seek help for it. But right now this is how they're coping."

While most studies make the claim that pro-ana websites promote and maintain anorexia by sharing tips for weight loss and concealing the disorder, only five bloggers mentioned this as a reason to start their blogs.

"Participants in this research, except for shutting down their blogs, did actively engage in ways to warn their audience about the content and ignored or blocked requests for tips and tricks from what they nicknamed 'wannarexics' -- young teenagers who want to become anorexic," the paper said.

Yeshua-Katz and Martins hope their research provides the medical community with greater understanding of the people they are treating. One of the bloggers they spoke to expressed difficulty finding "recovery" blogs and still follows the pro-ana blogs because "it's hard to totally abandon them."

"For example, they were missing a 24-hour support place," Yeshua-Katz said. "We need to see what about (the pro-ana blogs) is drawing people into the community and design blogs for recovery that offer the same kind of useful information so the recovery will work.

"By knowing what they're doing in those blogs, we might be able to find better ways to provide online support," she added.

The paper also highlights a major paradox for the pro-ana community. "They go online to vent out and to relieve stress. But then by having their blog, by having their secret life, it adds another level of stress to their life," Yeshua-Katz said. "There is an information game going on, and it's very intense and stressful because your stigma is unknown."

Ten of the pro-ana bloggers actually produce two blogs -- a "healthy" one for family members and friends and another about their eating disorders.

"The fact that disordered eating is such a solitary and isolating experience makes the Internet an ideal place for offering support and advice," the researchers wrote. "The pro-ana community is worth studying in its own right as a social space that affords a style of interaction that would be highly unlikely to be visible in the offline or pre-Internet environment."

This news isn't shocking to those of us who have Lived this Truth since the First Wave began in the mid-late 1990's.  What's new -- and so very positive for us -- is that this is a formal study MORE than just content analysis from an outside perspective.  This is the first study in the US to look at the positive side of Pro-Ana.  France preceded us with the ANAMIA Study, a comprehensive European study looking at Pro-Ana sites from the perspective of the participants' experiences.  This news is a Dream Realized for me, and I cannot be more blessed to see this information come to society at large.  My fervent hope is that this study will be the gateway to more funding and research in order to protect and understand (or at the very least, tolerate) the presence of the Pro-Ana Movement on the Internet.

I've been campaigning for this Truth for over a decade, and it is so beautiful to see it coming to light ahead of the grotesque sensationalist media which has long-demonized the Pro-Ana Movement as a whole.  Myself and the Project Shapeshift Community, as well as a consortium of other Pro-Ana bloggers and Administrators, are celebrating this triumph!

I am infinitely grateful to the IU Researchers for investigating this issue, and I look forward with great anticipation to see a more broad societal realization that ED Sufferers NEED AND DESERVE to pursue ANY path, free of judgment, which helps them cope and survive best.

It's a good day for us, Precious Ones! <3

Much love and BE WELL!


Sunday, August 5, 2012

10 Most Disturbing Communities On The Web -- A.G.E.'s Thoughts

I just read this article, "10 Of The Most Disturbing Communities On The Web."
You can bet your ass I commented, too. Here's why:  On their list, they include things like pedophile communities, drug abuse communities, hackers and blackhat SEO tactic communities. Guess what their number one item was?

I'll give you some time to think about it...

Have you guessed what's WORSE than pedos, hackers and spambot hawkers?

Yep.  ProAna. *headdesk*

Here's my reply:
"Really? #ProAna is the NUMBER ONE most disturbing thing on your list? Okay. Here's the TRUTH: ProAna isn't ProPathology. ProAna is an alternative approach to coping with ED's -- for sufferers, by sufferers. Conventional approaches offer us a 60-75% failure rate for helping those with eating disorders. This skewed, media hype demonization is a perfect example of outsiders inappropriately interpreting a niche community. Inside ProAna communities, one finds a very different environment than one may think based on content such as depicted in item #1 in this article. NO ONE with an eating disorder would recommend, recruit or tolerate those interested in weight loss or to looking to 'get sick' asking for 'help.' It just doesn't happen. What we DO see is fierce discouragement of dangerous behaviors and a supportive environment for those not helped by conventional treatment/recovery modalities.
Check out the following videos for an inside look at what the ProAna Movement is REALLY about:
Understanding the ProAna Movement I: www.youtube.com/watch?v=GYy1_zNvkHA
Understanding the ProAna Movement II: www.youtube.com/watch?v=_e1SEJPeh_g

Care to share your thoughts/opinion? I'd love to hear it.

Friday, July 20, 2012

AnaGirlEmpath's ProAna Education Series -- 2nd Video Is Up! :)

Understanding The ProAna Movement II:  History, Development and Censorship

The ProAna Movement remains one of the most controversial and highly-debated phenomena of our time.  In this series, I will be sharing findings from 10+ years researching ProAna.  My original question was, "Why?"  That question led to many others, and seeking answers has driven my studies since that time.  In Part II, historical information regarding medicalized support communities online; the evolution of ProAna in terms of the online dynamic, and the extensive efforts of condemnation and censorship are discussed.
Questions are welcomed and encouraged! :)

Eating Disorders and Personification: Ana? Ed? Male Or Female? ~TWR Thursdays w/ A.G.E.

It is very common for people with eating disorders to personify their ED. This is because the ED Voice and the experience of ED consciousness is experienced so much like there is an entity within, separate from self. Many patients name their disorder and intuit a gender for it as well. Ana, Mia, Ed, Rex, Eddie, Edna...the list goes on. Interestingly, female names seem to get the most flack; particularly Ana and Mia. This is likely due to the negative association with the Pro-ED stigma -- with which many people recovering from ED's are afraid to be wrongfully associated. What about you? Do you experience your ED as a Dual Consciousness? Is it a male or female presence? What do you call it? Please share!
I also share a favorite recipe of mine. ;)

Monday, June 25, 2012

To Kill Or To Violate? An Ethics Question

Medical Ethics. That is what is on my mind right now. Memories come flooding back from that course...and the following issue keeps me up at night -- literally. I am talking about the recent ruling by a UK judge that a 32 year-old anorexic who has been forced into treatment/refeeding many, many times, must again endure the treatment despite previously filing two DNR advance directives and the support of her family and friends regarding her wish to not endure another round of traumatic medical intervention. Why? Read on.

Practical Ethics

To kill or to violate?
Published June 21, 2012 | By Charles Foster

A highly intelligent 32 year old woman has profound anorexia. She has had it for years. It is complicated by alcohol and opiate dependency, and by personality disorder. Her BMI is 11.3. A healthy BMI is around 20. Less than 17.7 is in the anorexic range. Less than 14 indicates dangerous weight loss. Over the last 4 years her BMI has been well below 14. She describes her life as ‘pure torment’. All the things she wanted to do have been frustrated by her illness. She feels unable to give anything to the world, or to take anything out. For years she has had intense treatment for her anorexia and related conditions. On about 10 occasions she has been sectioned under the Mental Health Act. One of those periods lasted almost 4 months. Twice she has executed advance decisions refusing life-saving or life-prolonging treatment.
There are only two options: death or the violation of her autonomy . If she is not admitted against her will to hospital, detained there for not less than a year, and forcibly fed under physical or chemical restraint, she will die. She understands this perfectly well. She doesn’t actively seek death, but doesn’t want to be force fed. As well as the anorexic’s usual horror of calories, the forcible medical administration of nutrition reminds her horribly of the sexual abuse she suffered as a child.
Her loving, articulate parents want her wishes to be respected.
The prognosis is not good. Even with the draconian force-feeding regime, it cannot be said that there is a probability of a good result (in the sense of giving her a life acceptable to her). But it’s possible. The chance cannot be said to be negligible.
That’s what landed on Peter Jackson J’s desk in May. What should be done? The approved judgment, A Local Authority v E and others [2012] EWHC 1639 (COP) was handed down on 15 June 2012.
First, she was not capacitous. That meant, absent a valid and applicable advance decision, that the best interests test principle should govern the decision-making.
It was decided that the advance decisions were not made at a time when she had capacity, and were accordingly not binding. ‘I consider that for an advance decision relating to life-sustaining treatment to be valid and applicable’, said the judge, ‘there should be clear evidence establishing on the balance of probability that the maker had capacity at the relevant time. Where the evidence of capacity is doubtful or equivocal it is not appropriate to uphold the decision.’ (para 55). This is an autonomy-honouring declaration, although some will no doubt feel, wrongly, that to apply such a high standard may frustrate the provisions relating to advance decisions – provisions which, of course, are designed to facilitate autonomy.
So: where did the patient’s best interests lie? It was a close call.
When you’re assessing best interests in such cases, you do a literal audit. You draw up a balance sheet. On one side are the factors in favour of life; on the other the factors in favour of death. It sounds cold and scientific, as befits a determination which is notionally objective. But then comes the weighting of the factors. Not every factor is equally significant. The weighting is necessarily subjective and intuitive. But the patient’s past expressed wishes and (even if she is not technically capacitous) her present views, weigh very heavily. The judge noted that the patient’s wishes and feelings ‘are not the slightest bit less real or felt merely because she does not have decision-making capacity…..particular respect is due to the wishes and feelings of someone who, although lacking capacity, is as fully and articulately engaged as [the patient].’ (para 127).
The judge concluded that ‘[t]he competing factors are…..almost exactly in equilibrium, but having considered them as carefully as I am able, I find that the balance tips slowly but unmistakably in the direction of life-preserving treatment. In the end, the presumption in favour of the preservation of life is not displaced.’ (para 140).
This presumption is hallowed by constant reaffirmation by the courts, and is now reflected in Article 2 of the ECHR (which provides that everyone’s life shall be protected by law). It means, in this context, that there’s a strong legal presumption that life is valuable. Presumptions can sometimes be very valuable.
The principle is not absolute. It can give way to other considerations: see, eg, Airedale NHS Trust v Bland [1993] AC 789. Also, as the judge noted, the Mental Capacity Act 2005 might have given absolute priority to the preservation of life, but does not. The approach taken by the Act is reflected in the MCA Code of Practice at 5.31:

“All reasonable steps which are in the person’s best interests should be taken to prolong their life. There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery.”

This meant, said the judge (para 122), that ‘[the patient’s]life is precious, whatever her own view of it now is. She is still a young woman, with the possibility of years of life before her. The prospects of her making a reasonable recovery are highly uncertain, but it cannot be said that treatment efforts are doomed to fail or that treatment would inevitably be futile.’

It was this that swung the balance. Should it have done so?

Many in the lay press think the judge was wrong. They will be followed in due course by many academic commentators. The argument is essentially that this is a suffocatingly paternalistic decision; that a woman who has suffered most terribly at the hands of her disease is being made to suffer further in order to keep in play some irrelevant, antediluvian Judaeo-Christian principles about the sanctity of life; that autonomy should have won the day (cont p. 94).
A few comments:
(a) Autonomy is a victim of anorexia. It is so badly paralysed that it can’t do all the work.
(b) The evidence was that a regime of compulsory treatment had a chance of improving the BMI, and that the patient’s mental state improved significantly as the BMI increased to 14.5/15. Accordingly the regime is an autonomy-facilitating regime.
(c) Death, so far as we know, annihilates autonomy.
(d) The language of sanctity isn’t essential. Many of the cases don’t use it. Say ‘utmost respect’ for life if you want. The presumption still does its job.
(e) There are plenty of secular commentators who regard the notion of sanctity as foundational. Look, for instance, at Hoffmann LJ (as he then was) in Airedale NHS Trust v Bland.
(f) Don’t be scared by the spectre of vitalism. It’s not remotely a corollary of the principle as it is wielded in the courts. Ultra-conservative Catholics, you’re not helping.
(g) Can we really collapse ‘respect for life’ into ‘respect for autonomy’? Won’t there be lots of casualties in the collapse? You might, for instance, end up denying life-saving treatment to young children on the grounds that they’re not autonomous. Would you treat those children because they are potentially autonomous? Well, so is the patient in this case.
The presumption in favour of the maintenance of life is essential. It’s an appropriate tie-breaker in cases like this. It’s an appropriate way of entrenching intuitions and keeping patients safe.
It could be used simply as a way of letting judges sleep better at night – to keep patients’ blood off their hands – but that doesn’t seem to happen. It seems to be used intelligently, with an acknowledgement that it can be an instrument of oppression."

The following post appeared on Oxford University's Practical Ethics site (a lengthy commentary discussion can be found beneath the article):
http://blog.practicalethics.ox.ac.uk/20 ... o-violate/

Myself and several others have been deliberating on this for days. Opinions across the spectrum between For and Against (I am among the latter) are many.

What do you think?

Tuesday, June 12, 2012

AnaGirl's ProAna Education Series: First Video Is Up! :)

I just published my first video in my ProAna research and education project, "Understanding The ProAna Movement"!  Please share your thoughts, and if you like the video, please "Like" it on YouTube (you can also click "Like" at the top right of the embedded video)! :)  I am looking forward to stimulating some dialogue and I hope this video will be well-received.  Idealistic and potentially deluded of me? Possibly! LOL! ^_^

This is the video I made last month introducing this Project:

I'd love to know your thoughts! :)

Much love and be well, precious ones! <3