by Zhenya Senyak
Here’s how I met Diane Blackstock.
A while ago, a company promoting its myelofibrosis drug offered free plastic bracelets and information kits. We ran the story and a photograph and when we got requests for bracelets the drug company supplied us with a bunch and offered to pay the postage. (There are restrictions on drug companies collecting the names of patients.) We weren’t much interested in distributing promotional plastic bling and the whole thing blew over. Until Diane e-mailed me.
Somebody on her Facebook page saw our photo of the bracelet and wondered how she might get one. Diane gave me her shipping address and I sent along the package of bracelets and stamps sitting on my desk. To me, that she would go to that trouble to fill a member’s request was impressive enough but what followed demonstrated how Facebook forms a very thin border between the cyber and material worlds.
Other members of her Myelofibrosis Facebook Page, joined the conversation and put in their requests as well. Diane contacted the drug company and started fulfilling the requests on her own. Lots of them.
Since most Administrators of an MPN Facebook page suffer from an MPN – and the accompanying fatigue and other symptoms – it’s not a trivial effort to become a distribution center, packing, addressing and shipping stuff for no other reason than to fill a request.
A quick visit to Diane’s page – she’s currently one of three administrators along with Dolores Reed and Martine Rousseau – would quickly demonstrate that same caregiving quality. No question goes unanswered, no request for help or prayer not granted.
All the MPN Facebook pages exchange scientific and medical information from time to time. Some pages are more social, some more focused on a specific MPN, some feel like party sites with lots of bantering, jokes and cartoons interspersed in the conversation. Some fall often into sober therapeutic exchanges.
You just have to jump in to catch the flavor of each MPN Facebook site. And it’s always shifting with the current of conversation.
And what better time to do it than now as Facebook celebrates its 10th anniversary…and the fifth anniversary of its notorious LIKE button that let’s us jump right into the discussion without uttering a word.
One of the most extraordinary aspects of the MPN Facebook experiences is its impermanence. Like life itself the Facebook exchanges just keep on rolling, making waves or flowing unnoticed only to disappear in the hurly burly posting and uploading of photographs, jokes, CBC charts, grandkids and obituaries spinning ad infinitum to the bottom of the page.
But wait. All it takes is a comment to resurrect a long dead conversation and bring it front and center to the top of the page, briefly the star attraction only to sink back into obscurity within an hour or two under the weight of fresh posts, fresh comments, fresh news.
So what’s the attraction for us in the MPN community. Why has Facebook assumed such a dominating position in our discourse?
Our overserved little orphan community
As myeloproliferative neoplasm patients — with a worldwide population estimated at less than half that of Atlanta, Georgia – we’re flat out spoiled. Our expanding landscape of interacting MPN patients, caregivers and healthcare providers must be one of the most over-served communities on Earth.
While we are an insignificant subset of the hematology world, we now have four devoted non-profit Foundations, three e-mail support groups, one on-line magazine, four or five newsletters, one on-line quarterly journal, two or three lecture/workshop circuits, one on-line university, three video channels, innumerable independent MPN YouTube and institutional channels and many local interpersonal support groups.
What drives us to create a dozen or more Facebook pages on top of all that… and what’s the real impact of all the time we spend posting, responding, liking and friending on one or another Facebook page?
Seriously, does all this overheated talk help us communicate with one another? Does all this support infrastructure contribute to our health and happiness? Does it build community? The richness and diversity of our community is overwhelming, literally. It is mirrored in polycythemia vera itself, where an excess of rich, oxygenated red blood cells can overwhelm our system’s ability to process the sheer pulsating volume.
Is there a danger of communications thrombosis, clogging up the arteries of human interaction with trivia? Are we hemorrhaging information, both true and false, both essential and dangerous?
Nah! Thanks to Facebook, that most populist of media, we’re having fun.
Unlike the e-mail lists of the early days that fought ferocious battles to build loyal subscribers – our Facebook pages are generally open and flexible. Even in the MPN Facebook world there are a couple of jerks but so small in number and so drowned in the ocean of good-will posting that it’s not a problem. A guy’s a jerk? Just move on to the next Facebook page. Don’t like what you find? Start your own.
That’s a path increasing numbers of us are taking. Two of the featured sites on our List started just a few months ago and instantly attracted a following. One of those sites, MPN Interferon, opened by a newly diagnosed patient anxious to learn as much as possible, as quickly as possible, heavily promoted its opening to attract spirited discussion. The other, Polycythemia Vera PV – Supportive Friends, started by a more experienced patient
recognizable by her clear and colorful opinions — she once commented on her own hair saying it was extraordinary enough to deserve its own Facebook page — relied mostly on quiet word of mouth.
Both instantly created a definable environment, a welcoming place for new and veteran MPN patients and caregivers. Sometimes the field gets crowded. A FB page with a similar name, Polycythemia Vera – Friends and Family Support Group has a similar focus on PV but a low key, conversational tone presenting new, findings, and personal stories.
One page,that opened just a few week’s ago is narrowly focused on PRM-151, the Promedior drug now in clinical trial. Beyond its narrow focus, the group is also unique as the only MPN page that offers open membership. (The various Facebook designations of security – Secret, Private, and Closed – relate both to who gets to share posts as well as who can participate in the conversation on the page. Security breaches are inevitable…usually someone on a page reposting elsewhere… but in general the most secure sites do offer some level of privacy protection.)
For awhile, MPNforum’s Facebook page had the dubious distinction of being the most difficult group to join. Launched in April, 2011, the group page was originally designed to permit private discussion of MPNforum Magazine articles. As a result members of the page had to be both subscribers to the MPNforum and have a Facebook e-mail to qualify.
That system broke down and the Forum Facebook page, under the guidance of admins Barbara Kurtz and Elizabeth Bassett, opened to the general MPN community. In truth, Facebook is not an ideal medium for lengthy scientific discussion and the human condition of all members proved much more engaging. Any human experience easily brushes aside abstract discussion on Facebook. Like many established Facebook pages, over the years MPNforum had a strong stem cell transplant representation and shared in the day by day journey of those taking that courageous and hopeful plunge into chemo and implantation and recovery. Some members became more symptomatic over the past three years, progressed to more acute MPN conditions, some died.
There is an eerie blending of the mythic and practical, the video game and real life in every unfolding Facebook experience. There’s such a rich bedrock of common experience on Facebook pages it’s hard to believe we have never met most of these people. We’ve shared pictures of kids, grandchildren and dogs (always dogs), vacation cruise trips, waiting room agonies, despair, photos or videos and cyber Wish You were Here postcards.
And in all that we become a family of sorts that ends up actually caring for one another despite distance and disagreement, despite the mechanical keyboard strokes and pixelated screen images that bind us.
We may indeed be drowning in data, hemorrhaging information both vital and silly but Facebook gives us a chance to exchange serious concerns and complaints alongside jokes and bawdy cartoons with friends. It’s that mix and the instantaneous feedback in the form of Likes and Comments that keeps us clicking back to Facebook.
There are times we do need to come together for major projects – big patient/hematologist meetings, the Fatigue Project, a petition or demonstration, fund-raising for the Foundation’s scientific research. We need solidarity to get things done…but it’s not always a prescription for healthy patient interaction or building a strong community.
For that we need small groups.
Small group dynamics theory asserts the maximum size of a small group is 12-14 members, optimally six to eight. Beyond a dozen or so members, a group fragments. The maximum size of a Facebook page membership is infinite. So what happens when we pass the critical, interacting mass? When people are not known to each other, or rarely surface or post a progress report or pose a question, Facebook has built-in mechanisms to deal with it. Click through the major MPN Facebook pages and you’ll see the same basic dynamic at work.
There’s almost always a core group, usually clustered around the founder, the administrator(s). These are also the key universal responders, the welcomers, the social enablers. There are several clans, circles of friends who tend to Like each other’s’ posts and respond to each other. Newbies, usually exchange introductions, post for awhile, and either pick up sponsoring friends from a clan or sub-clan or retreat for a time into basic observation. The core culture of each MPN Facebook page derives from those at the center, the social enablers and group leaders. It’s a shifting center as life experience, illness, circumstance forces us in and out of the barrage of social interaction on the page.
One of the most liberating features of Facebook is our ability to participate in multiple pages, across porous borders while self-selecting our preferred sites. This cross-fertilization enriches our discussions, loosens the bonds of divisive loyalties and helps unite us. To wear the team colors of one Facebook page makes sense. These are our people, our friends in a real enough sense. To appear on another Facebook page and join in that conversation is just neighborliness, a play date, a sleep over, a condolence call, a bit of gossip.
Facebook can be compared to the busy street of an urban center. Much jostling, pedestrians, passing buses and taxis, colorful, noisy, mostly strangers with only a few friends recognized in passing. We meet and greet, stop for a coffee or just wave and go on. It’s an essential part of our on-line experience since Facebook can often provide the routes to destinations and the full flavor of a common, diverse community.
Smaller Facebook sites may have closer bonds among participants just as small town neighbors recognize each other in the markets and streets. Larger Facebook sites tend to form these “small towns” by clustering into core interacting groups with large pools of on-lookers. Ultimately, there is little difference between the largest and smallest of Facebook sites since each depends on relatively small circles of interaction. And both are dominated by interested on-lookers who rarely join the conversation.
Facebook contributes something invaluable to the larger MPN community – the sense of support, the sense that we are not alone with this damned disease that can take us, our friends and strangers in its bloody grasp. Not a bad contribution from a ten year old.
Happy Birthday, Facebook. Let the good times roll!
Nine MPN Facebook Pages
This chart is partial and not even all that accurate. Consider it a starting point to explore the rich and rapidly proliferating word of MPN Facebook pages. In part it can’t be that accurate since population of individual FB pages changes daily, hourly. Plus new pages sprout up all the time. You can get your own personal tour by heading to Facebook.com and sampling some of these pages for a start. (And if you’re following the fibrosis reducing Promedior drug now in trial with and without ruxolitinib, you might check out the newest Facebook site that opened too late to be included: Peppe Fryou’s page dedicated to discussion of the PRM-151 drug.)
|Myelofibrosis Private Support Group||Closed -831 Members||Diane Blackstock, Martine and Dolores Reed||831||2011|
|Welcome! We are a group of patients, caregivers and friends who want to share personal medical information regarding Myelofibrosis, MF and similar neoplasms such as Essential Thrombocythemia, ET, and Polycythemia Vera, PV without this information being posted on our friends walls. Everyone is welcome to join and will be accepted by one of the administrators. The purpose of this group is to offer support as these diseases are very complex and rare.|
|Polycythemia Vera PV Supportive Friends Closed-313||Laura Hilton, Christine Kelly Kennedy||313||2014|
|A group for those diagnosed with Polycythemia Vera and their significant others and caregivers to share, learn, LAUGH and offer positive support and hope to each other.|
|Essential Thrombocythemia Secret– 517||Kirsty Stevenson||517|
|Essential thrombocythemia is a chronic…See More|
|MPN Interferon Forum||Closed-619||Jason Rappaport, Christine Santana-Sticklemeyer||619||2013`|
|This forum is dedicated to MPNs and how interferon relates to their treatment, evolution, and future directions. It is open to anyone taking interferon, considering interferon, family members of those with MPNs who want to discuss interferon for treating any MPN.|
|Myelofibrosis Later Stage||Closed -110||Dolores Reed, Diane Blackstock||110||2013|
|We are a group of caregivers, family members and patients suffering with Intermediate-2` or the later stages of Myelofibrosis. The group’s main focus will be on Treatments, Trials, Meds vs SCT/BMT and symptom relief. We also welcome patients who have had an SCT, with discussion on any ongoing issues they may have, giving insight to those with an SCT option in their future. Anyone with PV, ET or newly diagnosed with MF will be referred to the Myelofibrosis Private Support Group.|
|MPNforum||Closed- 265||Barbara Kurtz, Elizabeth Bassett||265||2011|
|We started as a group of subscribers to the MPNforum monthly magazine atwww.mpnforum.com but quickly morphed into a growing family of supportive friends sharing the MPN experience in all its varieties|
|Polycythemia Vera support group Closed-912||Stephen Taylor||912||N/A|
|I have created this group so that the few people that have Polycythemia Vera can connect with others who have this form of cancer for support and information with each other and to know that they are not alone.|
|Polycythemia Vera –> Friends and Family Support Group||Secret-110||Peggy Zampetti Frederick||110|
|Let’s help one another LEARN, UNDERSTAND, SHARE and GROW. This group is comprised of people who either have Polycythemia Vera or know and love someone who does. Please feel free to add those you believe would benefit by joining. Have a great day! ♥|
|Myeloproliferative Disorders||Closed -822||Leah Wiseman Solomon||822|
|Open to those with myeloproliferative disorders, their friends and families, healthcare professionals and the just plain ole curious. Myeloproliferative disorders include Essential Thrombocythemia, Essential Thrombocytosis (ET), Polycythemia Vera (PV), Myelofibrosis (MF / AMM).
Take me back to the Contents
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