MPNforum Magazine

These Few Precious Days

It is that most wonderful of times, Early Autumn, the heat reluctantly releasing its grip on our days, the nights cool and fresh carrying just a tinge of the coming winter.. The maple leaves have already begun to turn in the mountains and the trees are starting to close up shop and pull down the shutters. Apples are suddenly available everywhere and the last of fresh vine-ripened tomatoes are gone until next year..
September song. The days grow short when your reach November. For many of us these are precious days and our time is short, too short to be spent in petty argument. This September issue of the Forum looks briefly at events in our MPN world, looks back at our earliest history of on-line patient support, and looks ahead to a brighter season coming.

It seems nearly impossible to present information of genuine interest to our MPN community without running into the buzzsaw of objection, controversy, and contention. Other health communities manage to organize support groups without all this rancor. Could it be something in our disorderly blood? Or maybe it’s just in our collective DNA.

A brief disputatious history: Shortly after the Internet permitted MPN patients to get together easily, argument erupted and participants split off to go their separate and discordant ways. Over the next 17 years or so, from those early e-mail groups to the latest splinter list a kind of armed camp mentality developed. Among the lists — MPD Support, MPN-NET and MPDchat –sympathy and support for members is abundant but conditional. Despite willingness of list managers to put in long, selfless hours in the work of supporting their own members, cooperation among the separate lists is virtually unknown. .

However, there is reason to be hopeful. The lock on crucial information once held by a handful has been effectively broken by the advent of faster, better search engines, informed patients and mobile computing. Simultaneously, Facebook and other social media offer a new easy openness for crucial support networks. An era is passing. A new era is already upon us.

The dawning of real MPN patient support was created out of the compassion, compulsion and selflessness of a single woman physician. Someone virtually unknown to us today just a few years after her death. In tribute, this first part of our series on on-line MPN support asks Who is Harriet? in hope the answer might recall us to our better, less confrontational selves as we move toward a more open, less combative world of on-line support.

One of our own here at MPNforum was present when the troubles first surfaced, or at least close enough. And here, in a coda to our tribute to Dr. Harriet Gilbert, Jeremy remembers those first meetings of a patient support group that formed under her guidance, a group that included the founding leaders of today’s two largest MPN groups — Robert Tollen and the late Joyce Niblack.

Sadly, we even manage to do battle with each other over simple research initiatives. The 23andMe offer to build an MPN DNA/phenotyped database in order to facilitate basic research has been met with hoots and catcalls as well as warm acceptance. We published a comprehensive report right here and were accused by a dissenting manager of MPN-NET of being paid off by 23andMe.

On-line e-mail based support groups, populated by MPN patients and caregivers, find their common interest in drug discovery and treatment options ends at the borders of their separate lists.

Censorship is widespread. For example, only MPD Support now publishes notice of MPNforum’s publication. MPDchat never did. MPN-NET stopped publishing our announcements. These attempts to stop the free flow of information by administrators are directly contrary to the interests of MPN patients and caregivers who come together for information and support. Dissent is an essential part of the learning process.

Within our own private Facebook page and here, in the magazine itself, we have had civilized disagreement. For example, Arch has a different opinion about participation in the DNA project and he expresses it in this issue… Mike has been vocal in his dissent in detailed comments right here… So when the first MPN 23andMe DNA report was completed we thought it was time to find out what this is all about and clear the air. You can look at Zhen’s report , Bare, Naked DNA, right here and make up your own mind based on the real thing.

Ploidy anyone? Not every research project engenders this kind of heat within our community. In part it’s a question of vocabulary. The dense scientific jargon in which findings are couched prevent easy access by those who most need to know. That was the case when we ran across a study on reversing fibrosis. In this issue, we present it to you along with a translation of a word you likely never heard before.

As ever, our faithful columnists are here and come this month with three questions, Can the human spirit drive biology? Now that you’re committed to beat fatigue, Are you ready to walk and run? And when you really think about it, Do you really want to be empowered?

Well, do you?

Finally, a note of congratulations to our own MPN Research Foundation, responsible for discovering and funding so much significant basic research into the causes of myeloproliferative disease since its inception. This week they launch their new website as a community tool with improved access to information and resources www.mpnresearchfoundation.org

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>>In this issue>> Who is Harriet?…Jeremy remembers the beginning of MPN on-line patient support..Zhen strips down to bare, naked DNA…Reversing Fibrosis, results from a Boston lab… Columns by Patricia, Jeremy, Arch, and Mike

To access an article or column, click on the hyperlinks, above. You can return to this contents page by clicking the Take me back link at the end of each story.

[Dr. Harriet Gilbert’s photo provided byThe Mount Sinai Archives.]