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.
Comments on: "MPDchat: The Last List" (9)
Ellen’s comment to “combine our efforts when possible to make more of an impact against this disease,” really resonated with me. The MPNs are so rare to begin with and we need each other. I will go on record that I’m more of a fan of the newer technology for sharing information but maybe that is just because I have worked in high-tech 30+ years so for the most part, I’m comfortable with new medium communications like facebook (although I have managed to avoid twitter, LoL). Still, because the info is so valuable, I make myself crawl through the various lists, blogs, fan pages, and forums as much as possible.
Thanks, Beverly, for replying and for all you do in managing the MPD-Chat. It’s been a considerable resource for me. I do think that each of the lists has a very different personality and approach, as Zhen laid out at the end. I would have found that very helpful to know that early on, as I kind of stumbled around to find what I was looking for. I think it’s good that we have different lists that fit different needs – I just wish we could combine our efforts when possible to make more of an impact against this disease.
The info below was originally sent to Zhen so he could make what I felt were
needed corrections to the story — I got word from him today that he thought
it would be best if I corrected the story myself via this comments section. I am
more than appreciative of his request for me to set the record straight…
For Zhen and others…
OOPS!, Zhen!!! You forgot to send me a preview copy so I could
make corrections prior to publication, thus this email so you can make
these changes as soon as possible. (In fairness, Zhen did ask me to
give input on the article, but due to a three-year issue with a stalker, I
had to decline, per police request.) I didn’t worry about the accuracy
of the article because I knew Zhen knew the facts as well as me but
apparently some of major import were forgotten and/or overlooked.
1) Our 700+ members are almost equally divided between those that
live in the UK and the US, with 50+ from 26 other countries…
2) It IS true that I asked our members not to mention other entities on
MPDchat, but you forgot to mention that it was for ONLY 6 weeks, and
it was a result of the turmoil created when you angered our members by
using our mailing list for your promotions.[truncated]
3) Oops!!! What happened? You left out all my credentials except one!
— I am a small business owner of a full-service florist and its success over
29 years, allows me to hire others to do the work in the flower shop as well
as all the housework and laundry, which frees my time to serve others.
— I am also a trained counselor and 3 times weekly I perform ‘free gratis’
family counseling & mediation services as I have done for 35 years.
— Since my husband has had PV for 28 years, I have been in daily study
of the MPNs for the past twenty years and it is that knowledge I share.
— I have participated DAILY on support sites for the past 12 years as a
member and am now the owner of MPDchat.
— For the past three years I have been writing patient brochures for MPN
doctors who saw my ability to take the complex and make it simple.
4) Since you know I write for these doctors, I’m not sure why you selected
one sentence, taken totally out of context, as your example as to how I reply
to patients, especially since the archives on all sites contain 12 yrs.of my posts.
Too, you mentioned that I’m the only one answering posts yet you know that
each month there are between 75 & 95 different people posting to MPDchat.
The best part of me I rarely share as it seems self-serving — but I feel the time
is right to share that I am a Christian and I have taken seriously the mandate to
live a life of service to others. This I learned from parents that likewise felt this
call upon their lives. Their favorite writing, and mine, by Foss, states “Let me
live in a house by the side of the road and be a friend to man.’ When I say
“Your Friend, Beverly’ I mean it; when I say “I’ll pray’, I do. When I say ‘I
care…’ it is from my heart. I am the mother of our two grown sons, and my
sister (Downs Syndrome, mid-fifties but functions on level of a 6 year old) lives
with us. She has taught me marvelous life lessons in patience, understanding,
the joy of living in the now, and about giving to others with no expectation of
any return for she truly has nothing to give but her love…and that’s enough. I
am not without foibles; I’m no expert on anything; all I can do on a daily basis
is simply give my best — but one thing is certain, it will never be said of me
that I didn’t love people nor care for their needs if it was in my power to help.
Hope this clarifies!
It was with great interest that I read your comments about all three of the MPN Lists. I started with Yahoo and quickly changed to MPD Support where I got and still get
excellent information from. Robert has a very scientific and factual List. Yes he can get augumentive but I do not pay attention to it. Robert is quite well know as he has spoken about MPN’s on TV as well as being in the newspaper.
A year or so ago I also joined MPD Chat which was owned by Judy and now is owned by Beverly. I have been reading Beverly’s posts to Robert’s group since 2007 and trust what she has to say. Beverly can get as scientific as anyone else but is also very caring and positive. I know that Beverly owns a florist shop; however she is much more than a florist, as she has to take care of payroll, all bookkeeping, her sister and is a counselor. Beverly has a full and active life as most do but she spends a majority of her time researching MPN’s and has for over 20 years as her husband has an MPN. She is in direct contact with the MPN specialists and checks with them about certain questions every so often. Beverly’s group is calming and addresses all issues.
I joined MPN Net about six months ago and have found it to also be a wonderful resource for information with a good staff. Joyce must of been a very special person.
Of course MPN Forum is a winner and very different from the other groups; I look forward to reading it every month. Great articles, wonderful authors.
My take on this is that all of these groups are a wonderful source of information and the owners are to be commended for taking their time to help others. It would be terrific if all groups could get along, as everyone needs access to all of the information that they can get to help with ones health.
Thank you for sharing. I am always here for you if you shout out and I am just a stones throw away.
I was surprised to read about your Doctor telling you Hydrea is connected to heart issues. I looked in tho matter for about 12 months because I have a CVD issue. I met with both my cardiologist and hematologist about this matter and after reading juts about every study their conclusion was the same. Hydrea is safe when it comes to this issue but we discovered some issues with INFN.
THANKS!!!! YES, I keep thinking that being in Clayton is closer to you than when I lived in SJ, but not sure – it’s a “fer piece” out here into these boonies and canyons at the very foot of Mt. Diablo! There’s a MPN meeting in Berkeley – soon, maybe we can meet up there.
I should have been more descriptive in my comment about HU and Heart…the “associate” thought I SHOULD BE ON HU with my platelets almost hitting 500 and that the swelling indicated a heart issue. Turns out my EKG – in Oct. was clean and by the time I saw my Hem. in August, my platelets were back down around 465. AND everything else was “as usual” and I think I didn’t even have a phlebtomy that visit, but maybe it was the Oct. visit. But “Associate” couldn’t get my blood out fast enough – interesting that with all else going on just at that time that all my labs were more exaggerated also
I think its time to share my 23andme info with the Hem….what is the consensus on that – will it tell him anything he might need to know…?
I’m also looking for doctor[s] in this vicinity, remembering that you go over to Stanford. My Hem is Stanford educated – and associated, so may stay w/him for the moment – while he isn’t very informative, I do believe he knows what he’s doing and I ENJOY the ease of my visits as he is set up to do the labs on my way in and I see him AS SOON as they are up – usually 20 mins. and if I need a plhebotomy, I go right into his infusion center and I’m DONE! All that is painless, but NOW the 1.5 hour drive to get there and that means PWE has to take a day off, now that he’s at Berkeley every day. With “traffic” factored in, that means we leave here early and must get back BEFORE traffic. You know the drill around here – you miss it one place and run right into elsewhere – if you don’t work it just right.
Thanks again, Jeremy. Sheridan
Oh…and I see a correction is needed to my 1st post…all the angst was just last summer, 2011.
PS: My Hem’s office ALSO GIVES ME MY LAB REPORT w/o ?’ing. It’s important, to me, to be able to track them….
From my corner of the world, it’s been very lonely, not having a place to go for support on a daily/hourly basis on MPDchat. [But, initially, that was my choice – to leave when I perceived what was happening….]. It was also comforting to read the posts of others and follow their journeys, etc. AND to also share in personal activities of daily life. I am not a fighter and I experienced “angst” on a list before being invited by Judy to join MPDchat in early 2010 – just after my dx. in late August, 2009. This disorder to too tough all on its own to also then be sidelined by extraneous issues. I still don’t have one whit of info coming from either my Hem. or PCP and am now in the process of finding – at least a new PCP. Last summer in the process of family seeking assistance for me, in learning HOW to deal with my issues on a daily basis, my PCP completely abandoned me and thwarted all efforts of my family to get that assistance, so it only lasted six weeks. When I had asked for pain meds, there was a resounding “NO”; when I repeatedly asked to discuss the questionable BP med. I was stared at and refused even basic discussion. Eventually, however, a month after it was recalled for the umpteenth time, it seems, my REQUEST/DEMAND to be changed to something safer, was met. It appeared at the moment, last May, that some of my issues were complications of the BP med. Immediately following the switch, two important things happened that I now realize were in progress: 1. I was developing a kidney stone and the malaise I was experiencing was partially a result. Once it passed in August, the extreme swelling in my feet and ankles subsided!!!! [FOR MONTHS neither doctor would acknowledge that “something was not right!”]. I felt a lot better! – Eventually! Nothing happens instantly, I’m learning. 2. I RECEIVED a dx.[reluctantly] from my Hem. that I do have Erythromelalgia [EM] and as Judy Cuckson had so graciously offerered a year earlier, ASPIRIN was pretty much the only answer. I’ve found info online – sad to say, that is my only resource for understanding what’s happening in/to my body. 3. During this couple of months, summer of 2010, I had a home health service coming almost daily and immediately realized that the exercise regimine was literally inflaming my feet and legs!!! I was almost crippled for several weeks! SO THEN, after fighting the unbelievable FATIGUE that DOES accompany the initial onset of PV, etc., I was now also fighting DEPRESSION – something that is NOT a part of my daily life – ever! At just this moment, my PCP: a. Cancelled my long-scheduled app’t. in mid-July, thereby negating his having to sign for my continued home health service AND then went on vacation and THEN I couldn’t see him until late OCTOBER. b. To even continue the initial six weeks, was scheduled numerous times with his associate, then cancelled and then finally late on a Friday afternoon, I was absolutely ABUSED by him! 4. That threw me into an unimaginable funk!. 5. I arrived for my Hem appointment in late July, only to realize skd. had left a message on a long abandoned phone service – and my Dr. was NOT IN! I saw his associate who brought up TWO dreaded words: HU and HEART ISSUES….and my “#’s” were also soaring. Without continuing to be a bore, suffice it to say – it’s been quite a year! BUT, I’ve survived! I’m still here to talkaboutit! AND I am moving on – literally, relocating to a new home in early Dec. and amazing myself and family that I DID IT!!! I packed up my own house and now I am UN-packing my house. Some days are good and some – not so good, but I’m “working it”. I miss Judy’s wonderful wit…she was there when I needed HELP most. Now, I’m learning to wing it on my own – at least for now and this Forum is a major IMPORTANT place for GOOD INFO!
Right On, Zhen. I enjoy your articles.
This has been an interesting series of articles, Zhen! However, I’d just like to correct a couple of personal points in the MPDchat round-up. Zhen writes that:
“ [Judy] 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”.
This wasn’t really the case at all, on both counts.
My daughter, Abi, had been definitively diagnosed with PV in December 2005 as she had a high red blood and a positive JAK2 result. But a while after that, and before I started the MPDchat list, there were doubts raised as to the diagnosis as she had a multitude of other, seemingly unrelated, health issues. We and Abi’s doctors still aren’t sure exactly what is happening with Abi, particularly as her red count is now ok but her white count has gone down to quite a bit below normal, but it seems like we just have to wait and see for the moment. Abi’s health certainly did have some impact on my decision to resign as list manager, but only because she was having considerable problems with non-MPD health concerns. The issue of whether or not she was at risk of an MPD did not contribute to my final decision. And most certainly the geographical make-up of the list had nothing to do with my resignation! I don’t know the exact ratio of UK/US/other members, but I’d guess it was probably something like 45%/45%/10% and I am still in touch with many very good MPD friends from all over the world.
List-managing is much harder work than many people realise, and MPDchat took up many hours of each day in researching, answering questions, sorting out squabbles both on and off-list, and general admin work. After Zhen left as co-manager, the list work became even greater and it was impacting fairly heavily on family life. But the final straw came over Easter 2011 when my brother had a serious heart attack. He has no family of his own and our parents are no longer alive so I’m all the family that he’s got. Therefore I had to drop everything and concentrate on his immediate needs which is why my departure seemed rather precipitate. I apologise deeply if anyone felt abandoned by my sudden resignation but I hope you all appreciate that family does sometimes have to come first. My brother is now doing pretty well, and we are in the process of moving him to a new house that we have bought a few doors away from us, so I can now keep a much closer eye on him!
I would like to thank Zhen both for his management contributions to MPDchat and more especially for his friendship over the years. I would also like to thank Beverly for so readily taking on the management of MPDchat. For the first eight months I remained the owner so could help from the wings but, since Christmas, Beverly has taken on the whole responsibility as owner of the group and I wish her the very best in her future endeavours.
Finally, I’d like to send love and my very best wishes to all of you. If anyone wants to stay in touch, I’m on facebook so just come and find me! :-) x