Making a connection versus Having a conversation: Can on-line, virtual communities help us regain health?

“What technology makes easy is not always what nurtures the human spirit.”

Sherry Turkle

 

Does membership and participation in an online community on the social media truly benefit an individual who may be affected by a (health) problem that affects his or her own sense of self? Social media sites virtually connect millions of people around the world erasing the notion of geographic boundaries, and online communities are also being used to promote health and wellbeing. Although the evidence on the benefit of using solely online communities for health promotion is scarce and the research inconclusive, these spaces of interpersonal connection and support are still sought out by people with specific health interests and issues.

 

Sherry Turkle, Professor of the Social Studies of Science and Technology at MIT  (Massachusetts Institute of Technology) and the founder and director of the MIT Initiative on Technology and Self, has been studying how technology changes not only what we do but who we are; and  how the Internet provides new possibilities for exploring identity. In her 2011 book, Alone Together: Why We Expect More From Technology and Less From Each Other, Turkle describes that the social media draws us in by providing an illusion of companionship without the demands of friendship and attendant hassles of intimacy; and we confuse postings and online sharing with authentic communication. Turkle states that these technologies propose themselves “as the architect of our intimacies.”  She argues that today more people are connected than ever before, yet they still feel alone and uncomfortable with intimacy. Turkle warns that social interactions and face-to-face conversations may be demanding but they are also emotionally enriching, and bemoans the preference for texting over talking.

 PikiWiki_Israel_32304_The_Internet_Messenger_by_Buky_Schwartz

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My personal concern has been with the use of social media by those who may be suffering from health problems, especially mental health or other such issues, where there is stigma, fear of disclosure and social barriers that prevent the sufferers from opening up with their near and dear ones.  I have what is called “lived” experience of mental illness and using mental health services, and I aim to contribute to breaking the stigma about mental illness by sharing my story and hope that it encourages others to do the same. In this essay I discuss my personal use of one social media site and my involvement in the eating disorder recovery community on that platform.

 

When I analyzed my experience, I found three distinct ‘phases’ in the process of using social media communities for aiding mental health promotion. Some of my experiences match with the observations of Turkle (2011), who interviewed hundreds of children and adults about their use of technology and their interpersonal relationships for her book. Although the research does not seem to stand firm behind health-related communities on social media, I discus some reasons why they still might be useful if the individual understands how to use them appropriately.

 

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Looking over at the clock, the digital green numbers read just after 4 am. Unfazed by this number, I turn back to my screen and reblog the next post I see.

 

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(Original poster’s URL has been removed)

 

Perhaps that is a bit of an exaggeration, but what else do you expect from tumblr, a social media platform, and the haven of late night bloggers. So I smile tiredly to myself, scroll on, and stay awake on my laptop for a little while longer. When it comes to technology and the Internet I am probably your stereotypical 23-year old; the biggest chunk of my time on the phone or computer is spent on social media sites: Facebook, Twitter, and tumblr. I actually enjoy being a part of online communities of people, where I can stay in touch with friends across the oceans, share images, text, and videos that are amusing.

 

I also actively participate in online communities of information sharing and support for dealing with my mental health. Now this bit does not seem to be part of the ‘usual’ use of social media by stereotypical 23-year olds. However, it is true that social media sites are increasingly being used for health purposes.

 

Using online communities for health provides a 24/7 connection to people with similar health concerns, can fill the many gaps in professional face-to-face healthcare, and simply provide opportunities for personal connection through shared experiences, information and resource sharing, and general support. It is generally agreed (and seen as common wisdom) that online support has the potential to address issues that are not being addressed by other means, and they have, to an extent, the potential to extend across geographic and socioeconomic boundaries and engage hard-to-reach populations (may not be the socioeconomically disadvantaged  but those who are geographically inaccessible).

 

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Health-related online communities are ‘a group of individuals with similar or common health related interests and predominantly non-professional backgrounds (patients, health consumers, or informal caregivers) who interact and communicate publicly through a computer communication network…allowing social networks to build over distance’ (as defined by Eysenbach et al, 2004).

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Internet Map: Visualization from the Opte Project of the various routes through a portion of the Internet (Barrett Lyon).

 

As an avid user of these types of social media sites, I would say I personally agree with the statement that an online group is indeed a community, despite the general debate as to what extent online connections can actually create a community. The main problem with defining social media groups as communities is that most often it stays online, and is difficult to translate into a physical community. I have indeed experienced some benefits such as talking to people across geographic boundaries and the potential to include limitless numbers of people in these groups; however, the type of communication and support that I have experienced in this community context has only been virtual. Realizing that the friends I have made and the connections I have formed are confined to a website is difficult, particularly when there comes a point when I need more than just a block of text in response to my reaching out for help and support.

 

The fact that online or virtual communities are more commonly used, however, does seem to say something about the nature of actual physical communities. It suggests, to me, that perhaps there is something about an actual real community, perhaps there are things that cannot be said in those physical environments, some embarrassment about sharing in an actual physical group which drives people like me to the anonymity and the seclusion of online groups. Perhaps virtual online allows one to hide while at the same time share, and thus provides some sense of feeling safe.

 

Online groups of people connecting over mental illness usually involves the sharing of experiences and the opportunity to reveal portions of the self that are hidden, particularly considering many mental illnesses still carry stigma, guilt, embarrassment, and fear of others’ judgment. Specifically related to mental health and wellbeing, the use of communities of individuals on social media has been conceptualized as a created space where the ‘invisibility’ of a mental health problem can be made ‘visible’ (see Hendry, 2014).  Indeed, these are primary reasons why I started to use the ‘recovery’ tags on my preferred social media site. Scared of speaking to friends and family about needing help, confused about who even to turn to, and nervous about the expense of accessing professional forms of treatment or care, I engaged with others like myself, and shared my own thoughts and concerns while also reading others’.

 

I felt like I wasn’t alone.

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However, despite the perceived and seemingly logical benefits of social media groups’ use for mental health, the actual research on the effects of these communities on mental health or recovery from mental illness is generally inconclusive. Research on online communities for health issues has not provided a base of evidence that these groups necessarily result in any positive improvement in health outcomes.

 

Online communities are nevertheless still perceived as a valuable tool for social and mental health support. The use of online communities for other health issues, such as weight loss, smoking cessation, and diabetes management, yield just as grey results as studies on these groups’ influence on depression—there are very few studies that look directly and before- and after-support data alone, and the ones that do show positive and negative outcomes to their use (Eysenbach et al, 2004).

 

I am unsure of how many people specifically use social media for mental health issues—that in itself would be a difficult number to accurately track—but it is suggested that using the internet and online communities is becoming increasingly important in day-to-day life, particularly for young people (see Project 99, 2014). These communities and interactions are extremely difficult to study considering they are usually used in collaboration with other forms of treatment for health concerns.

 

At the same time, it cannot be denied that people are using social media groups for support and information, and researchers continue to recommend the utilization of online sources, including social media, in addressing issues in mental health (Project 99, 2014). But if conclusions to analyzing the use of social media for health promotion still lead to the recommendation of accepting online communities as a component of support for mental health, what exactly are the varying experiences of people that use these communities that make actual data so grey and inconclusive? This is where my story comes in…

 

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Each person’s use of social media communities is usually unique, and in the next few paragraphs I will outline my personal journey through the process of recovering from an eating disorder, and my use of the tumblr recovery tags throughout that process. As I analyzed my personal experiences of using social media, I found three ‘stages’ or ‘phases’ and in each one I experienced very different reactions to the community I was (and still am) a part of. By looking at my own experience, it might become clear why online groups can be great or detrimental in the context of using them for mental illness. And maybe shed some light as to why research is unable to definitively review the benefits and setbacks of peoples’ engagement with these communities.

 

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I’ve had problems with chronic depression and major depression since I was around twelve or thirteen years old. It was also the foundation for developing an eating disorder at the age of eighteen. Fresh from finishing my first year at university, the end of spring saw a mental decline. Fast-forward to the winter of that year, when I was nineteen and the lowest weight I’d ever been at my full height, I had started looking like the stereotypical skeletal anorexic.

 

Not solely based on food or eating, and often a symptom or extension of other issues or causes, eating disorders are illnesses of the mind that manifest through eating disturbances. They are many and varied, from the more well-known diagnoses of restricting anorexia and purging bulimia to non-purging bulimia, eating disorder not otherwise specified (EDNOS—changed to ‘other specified feeding and eating disorders under the DSM V), binge eating disorder, binge-purge anorexia among others. The statistics on people with eating disorders show that people with anorexia have a mortality rate six times higher than the average person, with common causes of death including starvation, suicide, drug and alcohol overdoses, and even higher risks of dying by chronic disease.

 

For my initial case of restricting anorexia, I experienced a disease that caused eating to be equated with weakness, loss of control, and fear, and I used strict calorie counting and manipulation of my own intake and output through what I ate (or didn’t eat). Until Christmas day one year, I just snapped—it was like a switch had been flicked and all of a sudden I was aware of my mortality.

 

I first used tumblr’s recovery tags when I tried to re-feed myself from seven months of restricting anorexia nervosa—which, in the most basic terms, means I severely limited my caloric intake and compulsively exercised, losing fat, muscle mass, and bone density until my body mass index (BMI) dropped into the underweight category.

 

Convinced I could pull myself out of this death trap, I ate more cookies that I probably should have that Christmas, and, at nineteen years old, used my personal blog to find this online informal group of people whom I could relate to, and might be able to connect to in my own journey.

 

 

“The feeling that ‘no one is listening to me’ make us want to spend time with machines that seem to care about us.”

Sherry Turkle

Connected, but alone?

TED 2012

 

 

Experiencing the first phase: Feels good to connect but beware of minefields as you reach out

 

My use of the social media platform -tumblr- in this first ‘phase’ was a desperate need to know I was not alone. I wanted to get my life back. I wanted to know that I could get my life back by looking at what had happened to other people like me. I wanted to get advice about how I could silence the disordered voices in my mind that led me to anxiety around food, eating, mirrors, clothing…

 

I used the site and consumed a virtual diet of inspirational quotes, posts about positive recovery experiences, images of meals fit for recovery purposes and meal plans, and a sense that there were others out there striving to do what I was doing, and if they could do it, then I could too.

 

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But at the same time, I was also feeding on posts of relapse, images of too-small meals, continued calorie counts and logs about exercise, entries of self-hatred, self-harm, and the not-so-glamorous side of recovery.

 

During this time, there were plenty of posts that had a negative effect on me, but since this community was the only connection I felt I was able to have—being a nursing student really puts you off to admitting to on-campus professionals the extent of the problem—I kept returning to it.

 

I saw pictures of before-and-after recovery shots where the ‘before’ picture makes me feel like I wasn’t ‘skinny enough’ or ‘sick enough’ to start my own recovery, and where ‘after’ pictures were still so very small compared to my own body. There were filtered images of perfectly prepared meals and documented intakes that seem like so little food compared to what I was trying to get myself to eat, posts about relapse and disordered behaviors that were not tagged with trigger warnings (labels that identified posts that could inspire or encourage relapsing behavior), and often times the same bloggers returned month after month after month with continued episodes of major relapse and reports of inpatient referrals.

 

In the end, knowing very little about what eating disorder recovery was or the risks involved—both mentally and physically—my daily diet of the more difficult and negative ‘recovery’ posts had a larger impact on me than the positive ones, mostly because they were more relatable to myself in my struggles to eat, in my confusion, and in my feelings of desperation, loneliness, and desire for something familiar…such as the routine and control that my eating disorder had given me. Though initially motivated and excited to find a virtual group of people around the world with similar goals to me, people with whom I could openly type my disordered past and recovery journey, my solo progression into recovery, without medical aid and with limited face-to-face support, melted into a whole new problem and my second ‘phase’ of this tumblr use.

 

 

“We expect more from technology and less from each other.”

Sherry Turkle

Connected, but alone?

TED 2012

 

 

Experiencing the second phase: Complicated, Confused, Conflicted

 

In the spring of the following year, still nineteen, my use of tumblr’s recovery tags became more complex, for I wasn’t simply battling the stereotypical anorexic thoughts and behaviors anymore. Overwhelmed by confusion and a lack of additional coping mechanisms to handle the physical and psychological stress of refeeding and gaining weight from a lengthy period of starvation, I was using bulimic behaviors as well as attempting to get control of my desire to control my intake. A potentially more dangerous starving-bingeing-purging cycle that added to my body’s physical stress, I had become terrified of how complex and wrong my first attempt at recovering had gone, and was desperate to find someone to help that wouldn’t pull me out of my course, send me to inpatient treatment, or, and this was my biggest fear, judge me for my struggles with the even-more-stigmatized bulimia. So I kept using tumblr’s recovery tags, hoping that maybe I can get something out of it that I just hadn’t quite seen before.

 

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(Original poster’s URL has been removed)

 

The issues with tumblr that I’d experienced before still remained, but with new conflicting thoughts and feelings: I felt justified and empowered by certain posts of people eating pints of ice cream to meet minimum calorie requirements for their physician-set meal plans, and used tumblr bloggers’ successes to be able to eat. At the same time, the images I saw, the untagged triggering posts, and my own disordered sense of guilt around eating contributed to the overwhelming anxiety and guilt around food and contributed to self-induced vomiting, over-exercise, and fasting.

 

And then I would simply go online, find out someone else had had a relapse, see posts saying ‘tomorrow is a new day’, and use that mentality to supposedly ‘forgive’ myself for my lapse, and intend to do better the next day—only to repeat the whole cycle. This cycle was exaggerated by the limit of the recovery community’s scope of information: with plenty of users recovering from restricting anorexia, the potential for connections based on illness was technically stronger in my first phase.

 

With the added bulimic tendencies now, it should have been obvious that there were fewer people in these communities to relate to, for even amongst ED communities bulimia is seen as the more disgusting and shameful illness. The path to recovery for an anorexic and a bulimic will differ, and the mental struggle is definitely distinct between the two. Since I was mentally fighting both restricting (stereotypically ‘anorexic’) and binge-purge (stereotypically ‘bulimic’) thoughts, I see now that I was limited in what the tumblr recovery community could give me in terms of support. I became delusional in the idea that having those people I could virtually connect with would be enough to push my diseased mind into ‘actual’ recovery, and stayed stagnant in this second-phase cycle of disordered eating, despite wanting desperately to recover.

 

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“What technology makes easy is not always what nurtures the human spirit.”

Sherry Turkle

 

 

Experiencing the third phase: Positive when combined with hospital care

 

My final use of the tumblr recovery community occurred when I was twenty-one, and in general I am still in this phase today. It reflects the more positive aspects of online support, but I attribute this effect to the fact that this last surge of online connection comes after my time in hospital.

 

My attempts at self-recovery had failed for far too long, and combined with a major depressive episode that lasted over six months, I found myself cornered into inpatient hospital treatment for suicidal intentions and disordered eating. I will never forget the face of the nurse who referred me to Sheppard Pratt Center for Eating Disorders, in Maryland, because I fully believe that her suggestion and encouragement helped save my body from continued years of damage and my mind from further decline into disease.

 

There was no social media use in the unit where I was hospitalized. I was an inpatient for thirteen days, and a day patient for twenty, before leaving treatment on my birthday in August. I returned to my use of the tumblr community warily a month after leaving hospital, and found that my perspective on it had completely changed.

 

With additional coping mechanisms under my belt, I found my scrolling through the recovery tag became a critical exercise, where I was able to analyze posts and pictures not only for their relation to reality—for by this point, after extensive therapy and reflection in hospital on my past attempts at recovery, I was aware that recovery that is revealed online is drastically different from the daily truth—but also in their applicability to myself.

 

The content of the posts had not changed: mixture of untagged triggering materials, cheesy inspirational quotes, intakes, stories of struggling, they all remained. But what had changed was my mental state. I was now able to manage all these experiences within this online community. I had the mental resources that allowed me to un-follow people who consistently struggled or posted triggering material, ignore posts from people whose illness was drastically different from mine, and strategically communicate with individuals in my geographic area, with my specific concerns, and with stories that aligned more with my own. I had developed not just literacy about eating disorders and recovery, but a very specific type of Internet literacy related to social media consumption in the context of mental health, and could filtering out what did not help me.

 

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(A blog entry I’d written after leaving hospital)

 

In this third phase of my use of the tumblr community for recovery from an eating disorder, I’d recognized my previous use of this group as unhealthy, and I’d recognized that the mentality of using these groups as a primary crutch could be potentially dangerous. Most importantly, I’d realized my past engagement with this community was certainly not healthy for me, at least not in the stand-alone way I was using it.

 

The posts did not change. I had.

 

Now I was able to read triggering posts and analyze what they meant to me, and think if I’d ever felt or thought that way, and what I could do about it if I did again. I could see intakes and gain ideas for new foods or recipes to try, or identify remaining feelings of anxiety about certain foods, using this information to actively challenge ‘leftover’ disordered thoughts. I could look at peoples’ before and after pictures and separate my own physical recovery from that of other users, now able to congratulate them on their progress while refraining from critiquing my own. I was finally experiencing the positive give-and-take of positive support and connection that it seems like social media’s relation to mental health is supposed to give.

 

Looking back on my first use of tumblr’s recovery community, I did find that was my first time openly revealing and identifying my eating disorder, making my invisible internal reality—beyond just my physical symptoms—visible to others who could understand me. But in doing so, I also experienced others’ hidden realities, which, like mine, were far from perfect.

 

Making the mental illness visible on the online platform also affected my own recovery, first negatively through others’ revealed poor or relapsing experiences, and finally in a healthy way as a means of collaborative support from the position of a much healthier mind. Indeed this online community provided me with the means of connecting and interacting with people of similar concerns, but only to an extent: posts abounded related to restricting anorexia, but were generally absent or hidden regarding other eating disorders, suggesting that social media communities for health issues may be limited to the amount of people using them with that specific health problem. Where there is no representation, there is no community, and as a result, little relevant support. And as I’d discovered, substituting support from a similar problem did not address my personal struggle, as demonstrated in my second ‘phase’. It wasn’t until I’d been cornered into accepting additional help that my use of social media in eating disorder recovery changed for the better.

 

I find that my personal story reflects the beginning of this article, in that my experience aligns not only with perceptions of online communities’ potential but with ultimate research findings too. I did make connections but I was yet to find true emotional connection and the kind of support I really needed.

 

On one hand, I did indeed find a safe space and was able to reveal an inner portion of my hidden identity. I was able to find people to connect with, and was able to access this support at any point in the day (or more often, any point in the wee hours of the morning). I had used social media as a way to talk about something that was stigmatized and that I was ashamed of. And I was able to gain and give peer support and resources to others in this community.

 

On the other hand, my story is also ambiguous in the actual help that this community provided. I’ve experienced the harm of this community through an unhealthy mind, comparing myself to others and ultimately fueling disordered thoughts. I’ve also experienced the task of trying again and again, unsuccessfully, to gain some benefit from this community when at the time it was not relevant to my problem and did not add anything to my recovery. And I’ve also experienced the positive influence of these communities, but only after establishing a healthy frame of mind with which to contemplate the posts I was still endlessly scrolling through.

 

My experience may be inconclusive for those looking for a definitive answer to the question of the effect of social media communities on promoting mental health. However, my experience may be also reflective of the larger human experience with this new technology and medium: Internet. Mobile phones and social media.

 

Online communities as a medium for help in mental health problems can be so complex and bound to an individual user’s reality at the time of using them, and as a result can change based on other factors outside the actual online group. In my case, I found that online social media communities, like the eating disorder recovery community on tumblr, are not enough in themselves in recovering from a mental illness. I needed something else, a stronger foundation of information, resources, coping skills, and self-awareness before I could experience the positive benefits of this online community.

 

In addition, I briefly mentioned the separation of these online communities with those of the physical world. I personally believe that the disconnection between the connections I got online and what I could do in the physical world was extreme considering the amount of help I needed. When it comes to an issue like mental illness, or really any type of issue in which one is continually at risk of serious harm, having communities that exist mainly in a virtual space can be potentially dangerous, as what is online tends to stay online, and what is in the physical world—face-to-face interactions with friends, family, physicians, etc.—rarely crosses over to see what exactly people are consuming and engaging with on social media communities.

 

In my time on tumblr, I have only seen one consistent blogger who has clearly stated on her recovery posts that her therapists has her blog URL and is monitoring her intakes and entries. Otherwise, the online community and platform I was part of is very private and separate their online lives from their physical space. Considering the often shocking, disturbing, or concerning nature that posts can take, this separation seems to reflect a wider problem of not only stigma around mental health in the physical world, but a possible general difficulty of social media users in establishing and maintaining satisfying, genuine, and safe real-life communities for our specific problems. The fact that our blogs are often private and not shared with anyone who may have an influence on our physical lives is testament to that intentional separation almost as a form of protection.

 

I still continue to be a supporter of using online communities for this purpose, but not saying it is an expected standard for people to use social media in mental health or recovery or any health matter, really. As an individual, my experience of different phases and reactions to one specific online community can hardly be extrapolated to any sort of general audience. But I would indeed argue that when it comes to using social media in relation to support in mental health problems, that having had professionally-guided help and a firmer grip on my illness, needs, and recovery goals made the most significant difference in how I experienced the online recovery community on tumblr.

 

I have personally come to believe that simple virtual connections are not enough for recovery from a mental health problem, and that they probably aren’t enough by themselves for influencing modifiable behaviors for physical illnesses as well (as previously mentioned in reference to weight loss, smoking cessation, etc.).

 

However, it cannot be denied that these communities are out there and are being used by many people as a resource for health and wellbeing. As I write this piece and you read it, probably hundreds, if not thousands of patients and families suffering from some form of illness have searched online for help in dealing with their physical, emotional, occupational or financial distress arising from disease.

 

As such, then online platforms need to be considered in relation to treatment, support, and recovery, as they can certainly be used as an adjunct to more formal care. Even today there are diseases that physical communities and families are unable to deal with or discuss openly. And if social media communities for health, and specifically mental health, are going to be around and continue to be used by members of society, there’s no point in ignoring or rejecting them as unfounded. More needs to be understood about what these communities individually can bring to the table to improve a person’s health. I don’t see why we can’t still be optimistic about what they can potentially contribute to what we already have. Also, I am sure the nature of online platforms will also keep changing over time. Maybe making a connection is only the beginning to starting and having a conversation.

 

 

© Erin Royer, 2015

 

Note: Images are taken from my personal blogs: from my homepage (‘dashboard’) or from posts I had personally written or reblogged, all of which are on the public domain.

 

 

References:

  • Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., and Stern, A.  (2004).  Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ, 328(2004). [Online].
  • Hendry, N.  (2014).  Selfies as pedagogy: Young people x mental illness x social media.  [Blog]  Dancing With Theory.  Available at: http://nataliehendry.com/selfies-narcissism-and-stigma/ [Accessed 26 Dec. 2014].
  • National Eating Disorders Association (NEDA).   Mortality and Eating Disorders. Available from: https://www.nationaleatingdisorders.org/mortality-and-eating-disorders. [Accessed 2 January 2015].
  • Project 99: Exploring internet based approaches to support youth mental health in Greater Glasgow & Clyde.  (2014).  Available at: http://www.wegot99.com/.  [Accessed: 2 January 2015].
  • White, M. and Dorman, S. M.  (2001).  Receiving social support online: Implications for health education.  Health Education Research: Theory & Practice, 16(6), p.693-707.
  • Turkle, Shelly. (2012). Sherry Turkle, TED Talk. Connected, but alone?, TED2012 https://www.ted.com/speakers/sherry_turkle
  • Turkle, Shelly. (2011). Alone Together: Why We Expect More from Technology and Less from Each Other. Basic Books.
  • The Internet Messenger by Buky Schwatrz. Accessed from http://commons.wikimedia.org/wiki/File:PikiWiki_Israel_32304_The_Internet_Messenger_by_Buky_Schwartz.JPG
  • Internet Map by Barrett Lyon. Accessed from: http://en.wikipedia.org/wiki/File:Internet_map_1024.jpg

 

 

 


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