MPNforum Magazine

by Zhenya Senyak.

The roses surprised me...

A big bouquet of long-stemmed red roses delivered with sprays of baby’s breath popping out  between dark green ferns.   “From your friends at MPN-NET,” said the card, signed  Ian, Antje and Bob.
 

The chocolates, a box of hand-crafted truffles, were delivered by FedEX  right afterward. “Here’s to sweeter times for us all,’ signed jointly with XXX’s and OOO’s,    Robert & Beverly , MPD Support  and MPDchat,

And if a morning leg cramp hadn’t forced me awake, I could have spent more time relishing the peace and collaboration breaking out in our little MPN community.

Click here to see
the Valentine
Cartoon..

Now that we’re ending our History of MPN On-Line Patient Support Lists…. 

let me  step out from behind the editorial curtain and address List Owners personally and publicly with my own Valentine’s Day proposal.

Let us forge an amicable alliance for the good of our community.

Hostility  is senseless.  We are produced by, read by, the same community. We are part of that same community. As one listowner likes to say, we’re not doctors. But even doctors don’t exactly agree about what do about our MPNs.What we do have is our common understanding, our shared experiences, all 150,000 of us. As listowner or publisher, we have no special knowledge, no healing powers.

The best thing we do, as listowner or publisher, is make a space for people to get together, share their experiences, their concerns.  Why  would we want to screw that up?

Our friends are suffering, some dying, some have died of our diseases these past months.  In the middle of all that pain and uncertainty, one of you this past week viciously attacked another, publicly, and two lists — MPD Support and MPDchat,  over 2000 patients and caregivers — were witness to an ugly street brawl played out for days on your patient support lists. How much patient sharing can take place in that environment, how much relief from pain and suffering? 

MPN-Net, you do a much better job of avoiding direct confrontation…You exercise rigid control of discussion but in the process filter out information that might compromise your tight grasp on content.  (How is it conceivable you would bar notice of the MPNforum special feature, Joyce  ?)  However,  there is real discussion on MPN-NET, real interaction by subscribers who are well-informed, strictly disciplined, carefully policed, in this most Switzerland of Lists.

And then there’s your relations with MPNforum. 

 Since nearly 60,000 people have come to our pages surely your own subscribers are visiting the Forum.  Just as our readers subscribe to your Lists.  We have much in common and can work jointly for our common goals.  

You have always been welcome to use our pages as part of your own patient support efforts.  Comment,  submit articles,  debate conclusions, share your findings. 

We have every reason to cooperate and only the worst of reasons to contend.  I have MF.  Most of you have PV and some may be on the way to MF. If we have a common disease, and we’re willing to work for our common community, why not work in common?  

Your daily List, just like the monthly MPNforum Magazine  is a place our friends turn to for help, for solace, entertainment, understanding, for community.  What’s at stake is the well-being, the lives, of people we all care about.  We can work much more effectively on their behalf  if we collaborate, cooperate.

Every word published in MPNforum Magazine –every  report, interview,  graphic, opinion, analysis and story —  is covered under Common Copyright…which makes it available to you to use freely in your digests and e-mail lists with simple attribution. 

You are also welcome to use the Forum as a bridge.  Take no offense, but despite your best efforts, in its current format, the e-mail-based digest’s time is almost over, overtaken by technology.

Once, like the electric streetcar, it was high tech.  Now it’s like delivering messages via an old trolley hooked  to an overhead wire, clanging in the night while all around people are whizzing by focused on their I-pads, tablets and smart phones, dialing in to Facebook and YouTube, tweeting.

You can bring your MPN knowledge and experience to new media.  You all already have websites.  We would support you in any way we can,  help you set up your own on-line blog,  support your efforts to introduce visuals and sound to your presentations.   It’s time for a new era of cooperation. 

Amateurs and Professionals

Amateurs are very cool.  They have fresh eyes, outrageous views, creative insights and are often responsible for some of our most significant discoveries. Think Darwin.

On the other hand, professionals – trained, mentored, and field-tested – are normally more reliable.  Dentists, Navy Seals, surgeons,

As long as I’m still in front of the curtain

In speaking to the nature of MPNforum Magazine, I need to step out of the editorial “we” and present my own professional and amateur status. Some of the difficulties we face, I think, come from the nature of reporting.  You have been offended.  It’s understandable. So far as I know, while there’s been occasional sniping no one, I think,  has actually reported on the Lists before.

I am a professional journalist, a science writer for the most part.  I have an MA in psycholinguistics, completed a full apprenticeship, worked for great newspapers and written for many national magazines. Like Nick Kristof says, the nature of journalism is not to change minds but to expose things that are not on the agenda…like the harm done by Listowner contention and failure to cooperate.

But, in the matter of publishing MPNforum Magazine, I was an amateur simply because an on-line magazine based on MPN patient stories and science is new ground….and unprepared for the reaction to simple reporting.

Astonishing, just astonishing.

Wrapping up the History of MPN On-line Patient Support E-Mail List series, I can look back at a long career in journalism to evaluate your response.

From that long perspective, I have never before seen such over-the-top reactions to published material.   It’s the kind of response I’d expect  reporting on drug cartels in Mexico or political corruption in Nigeria. Consider the record, calmly:

   Since setting out on this project, I have never been challenged on facts  but I have been accused of corruption, hypocrisy, rumor mongering, profiteering and theft. (You’d think this was a primary debate.) 

I have been muzzled by all Lists.  Only MPD Support continues to usually publish our occasional posts accompanied by a warning its readers to avoid reading the magazine because we ban and censor.   We would never ban and never remove anyone from MPNforum subscription.  Ever.    (And yes, we have very minimal posting guidelines published in the sidebar  on every page.)

The MPN journalist’s job

I’m sure some comments and revelations sting, but that’s my job.  If it’s untrue or unfair it can be challenged right in these pages, right after the article itself, in the Comment section or through an article or letter to the editor expressing another view.

If not for the innocence of the amateur,  MPNforum Magazine could never have persisted. With fresh eyes and high hopes the idea of opening an Internet  forum where we could all tell our stories seemed so inevitable…before running into the Listowner buzzsaw.    My job as a professional  MPN journalist is to research and report the facts, whether it is a science story or a general news event, affecting our community.  My job as an amateur publisher was mostly to  help people tell their stories in word and pictures.

This History of the  MPN E-mail Support Lists brought the amateur and professional onto a collision course.    Can we research and report honestly on all issues concerning our MPN community — like the Lists, like scientific controversy, like alternative views on therapies — and still maintain an open forum for all of us to share?   All I can say is that’s exactly what we’ve done to date…and we’re going to keep on doing it.  It’s never our objective to step on anyone’s toes…unless he or she is standing in the way of the story we’re reporting.  

           Given the nature of Google and the Internet, any published overview of MPN patient support lists is an historic event.  Years from now, if a student wants to study the nature of on-line patient support groups, he or she is likely to come upon this series.  So let’s get it right by correcting  factual inaccuracies, if any, by posting different perspectives, reasoned comments to set the record straight through discussion.

 For example, in my story My Dinner with MPN-NET, I wrote the Scottsdale Conference was  a “…fund-raising event (and) fertile ground to recruit participants for clinical trials, work on donations and promote one or another medical center or hematologist.”   You don’t have to agree with me. Dr. Claire Harrison didn’t and she posted a comment expressing her differing perception.  Maureen added her voice, agreeing with Dr. Harrison and raising other issues.  That is the Forum at work, voices raised to discover, argue, discuss, and understand.,

 Without any editorial comment from the Forum,  the self-portrait of lists is too often unflattering.  Why not redraw it to reflect your demonstrated commitment and concerns for our MPN community over decades of service?

     CONSIDER THIS:       MPNforum Magazine, less than a year old, has published 129 articles and columns plus hundreds of comments all  by members of our common MPN community, serious and colorful articles, some news-breaking, some heart-breaking, some touching, some funny.  Not one crossed the bar set by MPN-NET or MPDchat or MPD Support.   None were linked to, virtually none referred to.  Instead of being welcomed as a new and common resource for our community, we’ve been shunned and attacked.

It’s not just personal…Refusal to acknowledge all this MPN material is a hostile act toward all of us who contribute to the Forum and to your own  subscribers, denied access to the stories of their fellow patients and caregivers. It has to end.  This mean-spirited hostility is not  who you are as compassionate men and women. So why not simply join forces?

Some actions, of course, are personal.   Dr. Arch, one of our founders,  whose old postings continue to appear on MPD-Support although he hasn’t been over there for years,  is moderated by MPDchat

Consider your chutzspah, Beverly, to place Dr. Arch —  a revered, much honored nonagenarian, a physician whose wit, compassion and intelligence are legendary in  our MPN community — on moderation and thus drive him out of MPDchat.  

Or  place Jeremy, another Forum founder, who has been in this community, active and supportive from the very beginning on moderation so you can decide whether or not his comments are worthy of publication.  Dr. Michael Goldstein, saw his column removed by you from MPDchat for offering his professional insights on the Forum.

Finally…how is it possible that none of the work done by MPNforum contributing writers —  several dozen MPN patients and caregivers — is considered worthy of notice by any List Owner?

Time to turn pro!

If any good can be served by shining a light on this shadowy underside of patient support lists, let it help end efforts that harm rather than promote the common good of MPN patients. 

MPNforum didn’t create this situation, we reported on it. It has been festering for nearly two decades.    

After all these years, now that science and drug development is opening a new era for us,  isn’t it time to put an end to these hostilities… before the trolley reaches the end of the line?

. ***

   The Bottom Line:    There really is no reason us not to subscribe to all three US MPN patient support lists on a trial basis.  It’s a way to meet new ideas, new people…and it’s free.   MPN-NET seems to have found a higher gear and is currently turning out consistently informative  daily digests in its tightly controlled environment.  And its archives are a rich research source…..MPD-Support, as it continues its format from its new ICOR location, is publishing a (usually) long list of entries, most by Robert Tollen, sprinkled with material from the archives,  marred by occasional off-topic rants and personal attacks.  This is certainly the most eclectic MPN daily around produced by the dean of patient support lists, (When he’s good he’s very, very good…) MPDchat, reviewed in the short article, “The Last List,” remains the choice of those who want a cozy, supportive and protected environment without too much science, technology, or open discusssion.

Take me back to the Contents

© Zhenya Senyak and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Zhenya Senyak and MPNforum.com with appropriate and specific direction to the original content.