MPDchat is the very last list.
by Zhenya Senyak
(This article ends the MPNforum four-part series covering the history and development of on-line MPN patient support e-mail lists. Links are provided in the text to each of the preceding articles.)
MPDchat is not only the last e-mail based MPN patient support list in our series, but very likely the last such list to become available
When it is so easy to set up Facebook page or a Blog and enjoy immediate, interactive conversation using social media, there is little advantage in starting a new black and white e-mail List.
MPDchat is the last list in other respects. It has changed the nature of MPN patient support lists. The first list was Dr. Harriet Gilbert’s e-mail list of her MPD patients that expanded to include everyone who came to her for advice. For patients was the first ray of light in the darkness of MPN ignorance.
Dr. Gilbert’s list was followed by Robert Tollen’s bulletin board list in which Joyce Niback participated. Joyce left and started the predecessor to today’s MPN-NET and Robert’s original list is today’s MPD-Support. These two patient-run Lists were the only on-line daily e-mail based MPN support services available in the United States until 2009.
After the election of President Barack Obama, the narrative at owner-dominated MPD-Support grew increasingly shrill as radical political posts, seemingly straight out of the Michael Savage playbook, were coupled with sharp personal attacks. Fed up, an English academic and housewife, Judy Cuckston, left to set up her own, UK-based Google group, MPDchat. Cuckston had joined MPD-Support in the mistaken belief that her daughter’s JAK2 positive mutation was preliminary to an MPN diagnosis.
Several people, all refugees from MPD-Support, followed Judy. I was appointed List Manager and was joined shortly afterward by co-manager Manuela Manuel. (These titles were largely mythical since the real work of building the website, sending out welcoming messages and keeping the conversation flowing fell to Judy Cuckston.)
Here’s Judy’s version of the beginnings:
“It all started when a few of us began privately emailing each other rather than posting to Robert Tollen’s list, which had become increasingly political and somewhat aggressive in tone. As the MPD-Support refugees grew bigger in number, we ended up with a kind of round-robin email system that was getting unwieldy and kept getting caught in people’s spam filters. So in July 2009, I set up the MPDchat site purely as a way for us all to chat together, never thinking it would become a proper MPD list of 700+ members over the next couple of years. In one of our first discussions, a member asked if we aimed to ‘take over’ from other lists. I replied:
“We are most certainly not in competition [with the other MPD lists]! I have a very limited knowledge of MPDs so I think it is very important to stay subscribed to one or ideally both main listserve MPD groups. My aim in this venture was just a way for cyber-friends who are linked by the problems of MPDs, to get together and share troubles, ask questions or generally chat about anything that interests them.”
Under Judy’s management, until MPDchat grew to over 500 members. These were the golden years of Lists in many ways. MPN patients and caregivers from the UK hooked up with their American counterparts and the level of discourse was carefully balanced between general chat and sharing of scientific findings and personal medical data in supportive exchanges. Relations with MPN-NET were cordial and MPDchat ran a joint Genetics for MPNs educational program and a Buddy Progam on both Lists simultaneously, with classes and exhibits posted to the new MPDchat website, designed and maintained by Matt Cuckston.
The MPDchat website, with content largely provided by Judy, is pubickly available and one of the List’s chief adornments,
Much more than that, the daily MPDchat digest was electric with Judy’s informed, friendly and witty conversation mixed with serious discussion threads. The List grew quickly, possibly too quickly since a sudden influx of members brought more requirements for introductions, resettling the social dynamic, and a few flareups.
Cuckston eventually realized her daughter’s JAK2 mutation was unrelated to any myeloproliferative disease. In early 2011, she concluded she really had no business running an MPN list with a mostly American membership and she had other pressing personal matters to attend to. Since Judy Cuckston’s style was gracious and, above all, civil her abrupt departure seemed doubly disruptive
` At a proliferative stage of my MPN and on the way to starting MPNforum Magazine, I declined management of MPDchat. Cuckston appointed Beverly X, a relatively new member of MPDchat, a long-time associate of Robert Tollen and a fixture on MPD-Support for many years. (For reasons of personal security, Beverly asked that we withhold her last name and photo.) A small business owner from the Southwest who uses the e-mail name Yourfriendbeverly, Beverly, like Judy, has no MPN but has been a long-term caregiver for her husband who suffers from PV.
There were immediate changes. MPDchat maintained its combination of MPN and Chat balance but the format became similar to the current Tollen model where the List Owner leads discussions and responds to inquiries, dominating the List. Setting an initially ominous tone, Beverly immediately placed the original MPDchat cadre on moderation and shortly afterward forbade any mention of other Lists or MPN magazines on MPDchat. Beverly refused to post MPNforum publication notices. The membership list I used as manager became the only basis for communication with my old MPDchatmates.
While Beverly has reached out to hematologists and the MPN Reseach Foundation to contribute responsible material, at MPDchat the technical, medical, and scientific content of the e-mail digest takes a distant back seat to support chat, small homilies, and friendly cheer-up messages. In this way she continues the warm MPDchat tradition by providing a sounding board and a capacity for cozy chat and companionship, both of which are in severely short supply on other Lists. .
There is a downside to this style of management since Beverly responds to most questions. Recently, in response to a subscriber’s question, “Can anyone tell me if having the JAK2 mutation automatically leads to an MPD?”
“When (JAK2) gets stuck in the ‘on’ position you are said to be JAK2 positive, if stuck in the ‘off’ position you are said to be JAK2 negative.” ” .
The idea of leading an MPN patient who doesn’t have the JAK2 mutation to believe she’s suffering some kind of non-existent disease is chilling.
An off the cuff answer like this is not just misleading, it also sidesteps any discussion of serious issues, such as the impact the JAK2 allele burden has on prognosis, information that could be of practical use to an MPN patient. And since many of MPDchat’s members are newly diagnosed they are likely to respond to the authoritative voice of the moderator with gratitude instead of the required skepticism.
There are clearly qualified people subscribing to MPDchat and occasionally participating. I have never, however, seen Beverly’s blatant flagrant directly challenged.
And that might be the whole point about these MPN Patient Support Lists. They vary and they serve different populations.
If you want usually accurate lay medical information without many frills, head for MPN-NET. If you want a mix of new and old MPN posts laced with occasional vitriol and bombast, but informed by deep experience, click on MPD-SUPPORT. In neither place, though, will you find the warm and supportive environment created by Judy and maintained by Beverly — in her own, and substantially different, style — as in MPDchat.
It’s probably fitting to end the series on that note.
MPDchat is the last list for another reason. We started this series citing the cultural DNA of patient support lists and traced how the founders’ DNA percolated through succeeding generations, inspiring both selfless commitment and narrow competitiveness.
The true founder is Dr. Harriet Gilbert and in her training, intensity, and deep love of medicine and concern for her patients these enterprises were launched. The next generation, trained and skilled, with serious MPNs of their own, butted heads. We saw the dedication and commitment of Joyce Niblack almost single handedly creating the infrastructure of MPN patient education. We’ve seen the tenacity, intelligence, and breadth of Robert Tollen’s contributions.
In appearance, in thrust, and in impact, MPDchat has mutated so far from the original that it might with reason be considered another species altogether, a personalized patient support list devoted to the emotional well-being of MPN subscribers without much pretense to the scientific and medical components that characterized lists from the early generations.
And, in a world that now has Google, Wikipedia, YouTube, on-line news and scientific journals plus medical websites the need for daily e-mails of MPN findings and opinion has significantly diminished. The need to share experiences in a sympathetic environment, however, endures.
© 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.