International MPN News, Science & Opinion

What’s with MPN-NET?

As if it’s not enough to be sick with this damned disease and working too long to get the September issue out, right before Labor Day we ran into a buzzsaw. MPN-NET apparently got its knickers in a twist over our forthcoming profile of their enterprise in MPNforum, an article not yet published!

You have to respect Ian, Antje and Bob’s tenacity and dedication in providing high level MPN patient support every single day of the year. But that doesn’t mean we have to be blind to their occasional lapses. This tightly disciplined patient support site slipped badly by permitting wild accusations to spiral out of control and hit the list, publicly.

>>>Here’s what happened>>>

In a private e-mail Bob Swanson, an MPN-NET manager, out of the blue, suggested Zhen may have taken money to write a favorable 23andMe article. Zhen responded, privately.
     Matters escalated as Bob Niblack, CEO of MPN-NET, posted publicly on the MPN-NET digest that he was “offended by the personal attacks made on the list Managers,” although, as one MPN reader noted, no such attack ever took place
     Marcia Gilliam jumped in the following day on MPN-NET – again, publicly, to 3000+ subscribers — to claim responsibility for Swanson’s accusation…. although how anyone could know about it beyond list owners remains a mystery. ” I may be the one who triggered that,” she said. ” I wrote to one of them offline and asked if Zhen had a source of funds for his glossy new e-zine that seemed (to me) to be plumping for certain things. If I caused a problem with my request, I apologize, but I still do wonder if he’s getting dollars from somewhere to push an agenda.” MPN-NET published her comment immediately.

Zhen responded in a public posting which was published Sunday night before Labor Day in the MPN-NET digest…probably not prime time for the small screen. So does that mean there are lingering doubts in our MPN community that the MPNforum is uncorrupted? Credit is due to Antje and the boys for posting Zhen’s response and Molly’s analysis. It would be even better if the List managers would acknowledge there was something a little awry in publishing nasty calumnies and damaging  innuendoes without the slightest substantiation.

Short of that, we’ll take responsibility for clearing the record and maybe follow that by clearing the air with a little absurdity.

>>> The unvarnished, simple truth>>>

Not one dime has been taken from any individual or organization to support or finance the operations of MPNforum or compensate or otherwise reward anyone. The idea that a corporation like Incyte or 23andMe would make such an offer or that Zhen or anyone on MPNforum would accept it is naïve and deeply repugnant. MPNforum is entirely produced from the brains, hearts and hands of MPN patients without a dime from any outside source. Operating expenses are covered by Zhen, personally and entirely.

(BTW, MPN-NET can’t make the same claim)

=================================================

And here is the varnished version for the MPN audience that likes its news hot, fast and loose….

This just in….

Zhen on the Take!

Exclusive Interview

MPD- NET exposes massive payola plot. So does MPN-NET.
(Hey, MPD-NET got there first. )

23andMe reportedly paid billions for Zhen’s support of their DNA research initiative , sputters one speechless representative. “Trillions” says an assistant speechless representative.

Many are “spitless with shock.”

Secret photos from overseas banks….money laundering suspected. Maybe worse… Read on.

“I just forgot to put it back,” Zhen is reported to say. Investigators are searching his Russian origins to see if they can find any unspent funds in the Arctic deep sea oil exploration pipeline. . The Sierra Club has been alerted. Stay tuned for this fast-breaking story.

By hanging on to his solid gold Rolex watches strapped to his wrists, MPNforum reporters were able to stop Zhen before he slipped away in his black 2012 Maserati GranTurismo on the way to his private Learjet…

MPNforum: Zhen, how could you? All the donations made to this magazine, all the bequests, the sacks of drug company money poured into your publishing empire, why wasn’t that enough? Why did you have to extort the subjects of your articles for more money, Why?

Zhen: My unemployment ran out..

MPNforum: Why not call your bankers?

Zhen: I forgot it was Labor Day and weekend rates applied..

MPNforum (turning to the camera): This case broke wide open when Zhen made a run for one of his country mansions sited by a private railroad spur to escape the hordes of reporters, SEC investigators, Tea Party representatives and political fund-raisers on his tail. Bob Swanson, formerly an ace airline pilot, decided to surveille the..

Zhen: Surveille? That’s not a word.

MPNforum: Yes it is.

Zhen: Not

MPNforum: It comes from surveillance.

Zhen: That’s a noun. You’re trying to use it as a verb.

MPNforum: See, That’s why nobody likes you and accuses you of stealing.

Zhen: I didn’t know that.

(The scene fades as Zhen leaves determined to forget grammar, fair play, and reason itself in order better to get along with the MPN mainstream. Can he do it? Stay tuned.)

Comments on: "What’s with MPN-NET?" (10)

  1. Ellen Jacquart said:

    Hi Mariel – Just noticed your request about sharing haplogroups. According to 23andme I am a T2f1 haplogroup. However, other than my ancestors being from northern Europe, I haven’t a clue as to what it means.
    Ellen

  2. This is awful, disgusting, etc.

    Well, I am still curious as to who besides Zhen and I have a J1C haplogroup from 23and me. I have seen no list of what haplogroups are held by various people here. If any of you have your haplogroup answer from 23andme, please write me. I am really curious!

    J1c people have an ancient maternal ancestor who comes from the Middle East, comprising today’s Israel, Arabia, and the Caucasus. My all-Irish mother descended historically from people who came from there along Africa to Spain and then to Ireland, and some of them went on to Scotland. I always knew I was “J” because of knowing this history.

    my dad’s side of the family I can’t get a haplogroup number on, because I guess we women can only get our mothers’ haplogroups. I do know something of the historical movements of my father’s scottish ancestors, however, back to the 12th century. His
    English ones I can take back only a few hundred years. However, I know for sure that
    my other disease, Porphyria, came down the Scots line, and that it almost certainly came from association with others, like the Stewarts, who are known to have had it. I don’t need 23andme to tell me that part, as it’s in the historical record.

    Write me PLEASE, if you know your haplogroup and have any ideas what it means.

    Mariel

  3. I agee with the comments- a brilliant response. I hope I can remember to take the high road with humour and wit when a hard knock comes my way.
    I have had one of those days- hospital for blood work, wait for hematologist, not happy, more blood etc.- you all know the drill. Anyway, through this I had my iPad with me and re-read Zhen’s email- my laughter drew the attention of my fellow patients and pretty soon the story had a scared young girl laughing and an elderly lady giving a hoot. So there you are- something not so good stimulated a reaction that circled round to help a few scared folk.

  4. I WOULD LIKE TO SAY, THAT I AM VERY THANKFULL FOR ZHEN, I WAS DIAGNOSED WITH PV IN 2006 UNTILL MPN FORUM WAS DISCOVERED OR BORNED I DID NOT KNOW MUCH ABOUT MY BLOOD DISORDED ,I JUST THOUGHT IT WAS NORM TO FELL THE WAY I DID BUT THANKS TO ZHEN AN MPN FORUM I HAVE GOT TO MEET A LOT OF OTHER PEOPLE THAT HAS PV AN NOW I UNDERSTAND MORE ABOUT PV ,I WOULD LIKE TO SAY THANKS ZHEN.

  5. When I read it yesterday I didn’t believe that you received money from 23&ME; is jealousy a problem with with the other list? I feel that all lists should be there to help one another not to try to slam other list. You were kind enough to invite all Lists to participate in 23&Me which other Lists have not done when they were asked to do a survey.

    I really enjoyed your adventure, take all of us with you one your next one. :-)

  6. Thank you for putting a smile on my face! My husband had a BMT three days ago and is not doing too well right now. This really picked me up! Now I’m going back to re-read the email as I want to have another laugh!

  7. Brilliant.
    I am sorry Zen you have had such false, unfair – and let’s face downright rude- things said about your newsletter. Your reply has given us all a laugh, only people jealous of your skills would be that nasty; so in a way they are paying you a complement!.
    Thank you.
    Marley

  8. Good for you, Zhen, for the satire, and for the new site–stay the course!

  9. I am so blown away to see that people are accusing Zhen of stealing. This man drags his weary body several times a day into his office space .. between bouts of fatigue and exhaustion,, to dedicate himself to this work and publication.
    How about some thanks and appreciation for his diligence and committment..and lets not forget his brilliant sense of humor.l

  10. John Foster said:

    I hope I never understand why it seems impossible to have a site where MPN patients can exchange information about their condition without it being totally disrupted by petty bickering and accusations. Glad you’re able to hang on to your sense of humor, Zhen!

    John Foster

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