MPN-NET automatic digest system
Date: Tue, 3 Jan 2012 22:28:03 -0500
From: Susan Wald susanwald@XXXXX..NET
Subject: One more vote of confidence
Those of us who are primarily lurkers and do not often participate, also greatly appreciate more than we can possibly say all the tremendous effort and dedication of Antje, Ian, Bob, David, Dr. LeClair, and many others who have been so very helpful, informative, supportive, and responsive when something frightens or confuses us and we really needed them. This group is a linchpin that holds together many lives, sometimes our sanity, and sometimes our hope. And we can’t thank you enough.
MPN-NET…. (MPN Patient Support Lists, Part IV.)
by Zhenya Senyak
It would be hard not to feel ambivalent about MPN patient support lists. All of them. These daily e-mail digests often divide our community by sowing dissent and building fierce, separate loyalties (Bad!) while spreading vital information and good cheer to those who turn to them (Good!).
MPN-NET, the grandmother of MPN Lists, for all its warts and occasional excesses, is clearly the reliable gold standard of the e-mailed MPN support digest.
It is a tribute to the excellence and commitment of the three MPN-NET List Owners — the administrative Troika — that despite our serious and public disagreements they still rank #1 in the Forum for their unusually faithful and committed service to members of our MPN community.
We know that the List publishes posts and responses every single day. Most of us aren’t aware of what it actually takes to get a daily digest out in the world. “When on MPN-NET list duty,” says Ian, ” it is not uncommon to spend most of the morning reading, answering emails, dealing with requests from patients for docs from the recommended list, answering private requests for information ….So I’d say on an easy day we might get away with a couple of hours of work, on difficult days 4-5 hours, and I know in a few cases we’ve been on and off the computer much of the day.”
It’s not that the Troika is specially noble. In fact, on occasion the List Owners can be downright petty. But nothing distracts from the simple truth: The work of MPN-NET is done by these patient volunteers, themselves suffering from advanced blood cancers.
. Joyce Niblack, the founder of MPN-NET (LINK) succumbed to her progressing MPNs, working right up to her last days; Ian Sweet has had PV for 20 years and now has reported an enlarging spleen; he has been on HU throughout; ,Bob Swanson’s PV progressed to MF in 2000 and is controlled by interferon; Antje Hjerpe has ET and was controlling her counts with interferon and then HU until her spleen started to enlarge and she added Pegasys to her regimen.
Despite their MPN-related disabilities, these patient/Listowners respond to calls for help, each day answer questions, make referrals, and share their experience.
So it’s easy to understand the spirit that draws them together in solidarity – and sometimes resentment – and how it’s possible for their view of the real MPN world to contract dangerously.
. MPN-NET, started in 1995, is part of the CMPN Education Foundation. (The other parts appear to be the hefty on-line archives, a newly revived website and the biennial patient conference held in conjunction with Mayo Scottsdale at the Mayo Clinic’s Arizona facility. There used to be a newsletter but, with the passing of Joyce Niblack in 2009, MPD Voice was discontinued. The name itself was passed on to MPD Voice that runs a patient and MPN specialist group based in London offering forums across the UK and real-time patient to patient contact via a buddy scheme.
Today MPN-NET is the largest e-mail-based MPN patient support List, with nominally 3000 or so subscribers, a core group of a few dozen actively participating members and possibly a hundred or so subscribers who regularly follow and occasionally post to the daily digest.
The MPN-NET Troika of “List owners,” administrators who tightly coordinate their mutual efforts, are currently: Ian Sweet, in Australia, the senior member by virtue of tenure, was an early member of MPN-NET (1996) and was selected by the Niblacks as a List Owner in 2001; Bob Swanson, ” came on “‘in the mid-‘naughties,’ according to Sweet, about 2005, after a succession of other volunteers; and the newest member, Antje Hjerpe, was selected when it became obvious in Joyce’s last year that she would soon be unable to participate fully.
In pursuit of its educational mandate, MPN-NET is reliably straightforward. There is necessarily considerable overlap and repetition in List Owner responses but occasionally an administrator will dig deep into research to answer a question. Their input is boosted by the frequent presence of University of Massachusetts Chancellor Professor Susan LeClair who introduces a mix of insight, hard science and humor in her deeply useful and entertaining mini-essays. Washington, D.C. attorney, David Alexander, a bit of a biogeek, often supplies dense scientific abstracts direct from the journals occasionally punctuated by his informed comments on medically relevant materials..And any List that offers us the occasional wit and wisdom of Hill Country Molly is automatically worth browsing.
The Troika alternates leadership of the List assuring responses to questions and appeals, sanitizing content, and moderating subscribers who violate the List’s stringent rules. Overall, MPN-NET provides a dependable source of responsible information to MPN patients and caregivers and has made an important beginning in the work of education.
“We are a close group,” says Bob Niblack, founding CEO of CMPD Education Foundation, commenting on the evident ties and affection that bind many on the List. That closeness may be both the main attraction and most significant limitation of MPN-NET. The List itself reaches perhaps 1 or 2% of the US MPN population and a significantly lower fraction of the MPN world population. Its other major activity, the Scottsdale MPN patient conference held in conjunction with the Mayo Clinic, is even more exclusive.
The biennial Scottsdale conference sponsored by MPN-NET, while wonderful for social networking, has, like all such events, little impact on raising public consciousness or MPN community knowledge of our diseases.(See earlier discussions of MPN patient conferences.)
.About 200 patients attend the conference. Presentations and workshops cover familiar ground and reach a similar though more affluent subset of the niche audience – educated, middle class, internet savvy — served by MPN-NET. The purpose of the Scottsdale conference, which may originally have been educational, is now frankly commercial. There are workshops, presentations, and educational interactions among patients and between patients and doctors.
Registration fees for the biennial Scottdale event, along with DVD sales and corporate donations, have been the chief source of financing for the CMPN Education Foundation – MPN-NET’s corporate owner. This fund-raising event is also fertile ground to recruit participants for clinical trials, work on donations and promote one or another medical center or hematologist.
Historically, under Joyce Niblack’s leadership, MPN-NET made a spectacular pioneering dent in the wall of ignorance that surrounded MPNs at the dawning of the 21st Century. Joyce’s work in establishing, MPN-NET, creating the website and archives,, performing basic research, supporting the Harvard MPN data base and bringing world class hematologists into the public eye are monuments to that effort. The Troika, with an occasonally varying cast, has kept faithfully to the daily grind that preserves that legacy of education and service. It’s an effort that is sometimes fruitful and sometimes tragically sad but always worthy of admiration and gratitude.
Much has been made of contention and competition between lists – both here and within the Lists themselves. And between some Lists and MPNForum Magazine. It exists. Looked at in light of this List history, it’s sad and toxic but not surprising.
[This cartoon, approved for all ages, is purely symbolic and does not refer to any specific individuals. Really. The cartoon does, however, present the prevailing List culture and is offered instead of many examples detailing the competitive lack of unity and cooperation among the American MPN patient support e-mail Lists]
“The Genesis of Patient Lists” Welcome to Planet MPN
Running a List, any List, is hard work. Stress, added to the historic precedents of division can make peaceful cooperation difficult. List owners, list managers are also patients, suffering with advanced MPN symptoms, providing support for other patients 365 days a year. They are sometimes worried or in pain, have seen friends fall in battle and have lost many long-time allies to these diseases. Starting from a background of competition and division, it’s not had to see why List managers barricade themselves against perceived threats to all their long, hard work.
The real fallout from this lack of unity within the MPN community is fragmented impact . Instead of working together to raise international public consciousness of our rare and deadly blood cancers, to raise funds for the foundations sponsoring basic research, to act directly to help patients….virtually all energy within the Lists is directed at List functions and List members… with occasional mention of a major event sponsored by one Foundation or other. It is both the strength and fatal weakness of MPN on-line patient support lists
Picking up the dinner tab
There are so many good things about MPN patient-centered conferences for those fortunate enough to attend.
One enthusiastic supporter of these events is Marty Prager “I am strongly in favor of conferences such as Scottsdale. Everyone leaves with more knowledge than they came in with… The opportunity to hear so many acknowledged experts in the field talk on their latest research is remarkable. The networking opportunities with physicians and patients alike during meals and social hours was my favorite part. …- the sense of camaraderie uplifted my spirits at a time when I really needed it. “
The MPN-NET donation request.
So when the List Managers of MPN-NET request donations to support its MPN patient conference in Scottsdale our first impulse might be to say, sure, why not? But it’s worth a closer look, because the request itself seems incomprehensible in light of financial and charitable realities.
It’s only by understanding the competitive insularity and the self- referencing nature of MPN patient support — coupled with List Owner Myopia — that this surprising post makes any sense at all.
On December 21, 2011, the MPN-NET Troika jointly made an appeal for
funds, answering a subscriber request to suggest areas for yearend donations. Their answer: “The greatest benefit for all of us, would be to donate to the MPN Education Foundation….” and the e-mail went on to say the donations would be largely used to underwrite the Scottsdale patient conference at Mayo.
The Scottsdale conference isn’t for all half million of us (or more) worldwide.
The Scottsdale conference is self-financing , more than covered by registration fees, according to both Bob Niblack and CMPN’s filings. Conference revenues from fees are about $30,000 and the single biggest direct cost is the $15,000 dinner tab for the 200 attendees. The rest is pretty much free – meeting space at Mayo, pro bono speakers — except for travel, some lodging and incidental costs.
The other CMPN and MPN-NET services have little or no associated costs. According to Listowner Ian Sweet, the web services and digest are supported by ACOR (Association of Cancer Online Resources) and L-Soft offers hosting and e-mailing services at no cost. The List Owners are unpaid volunteers.
The bottom line
While there is an educational component to the conference, Scottsdale is very much a fund-raising affair. Corporate donations from drug companies to CMPN Education Foundation have indeed declined but historically the organization has a healthy annual surplus, revenues typically twice as high as expenses. Net available assets or fund balances at the end of 2010 were $105,344.
But we have no idea of MPN-NET’s current operating expenses and if they claim they do need sustaining donations they undoubtedly do and we should all chip in. That’s not the issue. Even if they were stone-cold broke how, except for serious List Owner Myopia, could anyone suggest “the greatest benefit to all of us” is to donate to them.
Compare that with the benefit we all derive from donations to the MPN Research Foundation which has already placed $8.5 million in productive MPN research funding or the Leukemia & Lymphoma Society with its $100 million patient co-pay assist program, or how we all will benefit from the MPD Research Consortium, the National Cancer Institute, the Bone Marrow Registry, or …United Fund for that matter?
The Antibody Response
What this donation appeal highlights is the loss of balance and proportionality that comes with withdrawing into the isolated shell of a separated MPN Patient Support List. But why?
If this survey of MPN on-line patient support lists tells us anything at all, it should tell us these are all highly motivated, intelligent, committed people working on their own time for their MPN community. And that’s the rub! Working for their MPN community.
There is a natural analogy to this attitude, one used by our own immune system to identify foreign objects and neutralize them. Antibodies discriminate between our own cells and tissues from those of
invading organisms. From the perspective of the antibody the world consists of us and outsiders and, on perceiving a threat, they neutralize the outsider. It’s one way to understand the inexplicable hostility and suspicion that characterizes interactions between groups that should be natural allies. MPN-NET Listowners are committed to preserving the legacy of Joyce Niblack and protecting the interests of their subscribers.
And isn’t that the sad bottom line of the American MPN Patient Support List epic that started with so much hope in Harriet Gilbert’s Upper East Side Manhattan office in the 1990’s.
I thank you for the stimulation that you provide and the renewed enthusiasm that
you have given me in the pursuit of my dreams about contributing to the lives of MPD patients in any way that I can.
– Harriet Gilbert, thanking members of the very first Patient List (photo: The Mt. Sinai Archives.)
Instead of serving many, today each list serves a few. Instead of uniting us, the MPN List process helps divide us. The very act of drawing a select group of people into the boundaries of a confined list managed by competitive and myopic List Owners separates us from one another.
MPN-NET and the CMPD Education Foundation have led in so many significant areas in the past. They can choose to help lead us out of our separate warring enclaves into a union of all MPN patients worldwide by making peace with MPN patient organizations.
That could be a Conference that really would benefit us all…and energize the MPN community’s war against blood cancer.
Ask youself. What would Harriet do?
© 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.