International MPN News, Science & Opinion

My Dinner with MPN-NET

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.

l. to r., Ian Sweet , Antje Hjerpe, Bob Swanson

   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.

Scottsdale

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

 

Click to Enter 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

Raised Eyebrows

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. 

 Before addressing the actual need for funds by  MPN-NET or the CMPN Education Foundation,  consider the appeal that a donation to MPN-NET is  “the greatest benefit for all of us,” particularly since  the funds will be used to underwrite the Scottsdale conference.

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

Human rhinovirus with antibodies Photo Credit: Thomas Smith/Danforth Center/science photo

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

Harriet Gilbert, 1983. Photo courtesy The Mt. Sinai Archives

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?

Take me back to the Contents

© 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.

 

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Comments on: "My Dinner with MPN-NET" (14)

  1. I am with Dr. Harrison on this Zhen. I get your point, but I think it is overstated.. I am very grateful that the major hematologists, medical/research centers and drug companies are taking any interest at all in our rare orphan disease. Also, I am grateful to MPN- Net and the Education Foundation and the MPN Research Foundation for their work in getting these conferences up and running. Sure, only a small % of patients can attend- but it’s a darn good start. I understand the need for more basic research, but good luck with getting that funded in a hurry. I have not been to one of the conferences, but have benefited from the info that has been shared, and look forward to the day I can attend. As I have posted previously, i fully support a broader “population” approach to research, education, and intervention. In the meantime—every little bit of information helps, as does increased access to clinical trials. This has been bugging me for awhile- so am glad to have my “say”.

  2. Dr. Harrison, your point is well taken and I’m happy to clarify the record. Referring to the importance of Scottsdale to the CMPN Education Foundation, I wrote: “This fundraising event is also fertile ground to recruit participants for clinical trials, work on donations and promote one or another medical center or hematologist.”
    I never intended to suggest participants were directly encouraged to attend particular institutions or enroll in trials. However, clinical trials are a multi-billion dollar business, essential to support medical center facilities and staffs. A key element in that business is the recruitment of patients.
    World famous hematologists presenting the results of clinical trials or describing future clinical trials to an audience of patients facing progression of an incurable disease is encouragement enough.
    The promotion of medical institutions is both subtle and undeniable. Scottsdale, MPN-NET’s joint effort with the Mayo Clinic, is held on Mayo premises and the star attractions are mostly drawn from Mayo and MD Anderson, two of the premier medical centers in the United States.
    The CMPN Education Foundation website – the only place one would go to view presentations and photos from Scottsdale — carries a link to Clinical Trials. On that page, under “Current Clinical Trials for the MPNs.” the only participating centers listed are MD Anderson and the Mayo Clinic. http://www.mpdinfo.org/clinicaltrials.html
    Four of the six members of the CMPN Education Foundation’s scientific advisory board are from Mayo or MD Anderson as well as one member of the Board of Directors.
    I can appreciate the amount of effort involved in putting together these Doctor-Patient MPN conferences particularly your local events we recently described. And I deeply value the outreach to patients in activities like the videos produced by Dr. Ruben Mesa and Dr. Ayalew Tefferi. That appreciation doesn’t require ignoring the costs of producing those videos and the Mayo Clinic’s anticipated return on its investment.
    Similarly, for all its direct benefit to participants – and I agree it can be enormous – Scottsdale is undeniably a fundraising event with significant commercial overtones impacting hematologists, medical institutions and MPN-NET.

  3. Zhen your article is a great tribute to all who work to support the MPN community, though clearly there is always more that can be done.
    In Europe we lag behind and our own group was grateful for the chance to use MPD voice for our website and activities http://www.mpdvoice.org.uk.
    As someone who has attended the Scottsdale conference my impression is not yours I didn’t see any encouragement of attendees to attend particlar institutions or enrollment in trials, These congresses as we know having organised several throughout the UK take a significant amount of work and commitment. This is almost the only time I have disagreed with one of your usually well written and witty articles.

  4. OK Arnie- I want it all- poetry, music, manhattans at posh conferences, and pot. And some push-back tolerance would be a nice change, I agree. Miss your chirpy postings of late (as well as that fellow on some isolated island in Scitland!). So back to the pot, I have been thinking of late that I would like to give it a go (well another go since my youth). But how does one get “clean”, reliable stuff these days. Hmmmmmm.

  5. Great article and tribute to the work of the MPN-Net list managers and major contributors (David, Claire, and others who offer great comments and questions). I strongly agree that the missing pieces are 1) a focus on the broader MPN population needs/issues, and 2) a collaborative effort between lists. At the moment, the service resembles a great walk-in clinic, or emergency department- an individual, demand-driven, care system. We need an MPN “population” view- equivalent perhaps to an ER asking, how many diabetics are we seeing, why, and what can be done to help that population at a community level to prevent crisis and improve health. Pretty darn hard of course for a rare disease that is pretty much off the radar, but joining forces, and thinking about activism for the group as a whole is the key. My 2 cents!

  6. It would help if everyone tried to get along with one another as all Lists are very important. If one is not able to read a certain List or know about another List, the person might miss a lifesaving post. However, I feel that one should not argue, hurt the feelings of, or discredit another list member on any List. If someone has a problem with another List member, it should be between the two of them and in a private email.

  7. Elizabeth Goldstein said:

    Was happy to see Arnie McConnell’s comment because an article concerning the use
    of pot to help with some of our side effects that was in your first issue has been pulled
    from your archives – if not, I have been unable to find it and have searched for it
    several times. I’m not advocating the use of pot for everyone and of course, know that
    it is illegal, but feel that this magazine should be open and uncensoring and if someone
    wants to share a good experience with any substance, medication, herb or anything
    else, this should be the place to do it. Pot doesn’t seem to effect everyone the same
    way so some of us might find that it makes us feel better but some would dislike the
    effects intensively – might be a gene for that, too. The issue for me is that I want to
    be free to read all articles and comments and make my own decisions about what I
    want to try so, thank you, for posting Mr. McConnell’s comments.

    • Thanks for the reminder, Elizabeth. The

        Marijuana Papers

      was with several Poststhat had been converted to private status for conversion to Pages. WordPress technos will understand but the end result is this excellent piece was out of public view for a time. We’ll add a link now that it has been taken down from the attic.

  8. Mark, Thank you for your comments. I’m delighted at your response to Jakafi and hope for your continued quality of life improvement. I anticipate the preliminary data on a life extension benefit will be proven as well. It’s not a cure…but it’s pretty damned miraculous.

    I appreciate your candor and see from your sentence “Zhen’s rant almost implies that the list-owners want to personally profit, etc.….”that you seriously misunderstood my intention…OR, I badly presented my case, or some combination of the two. My “rant” was definitely not about money.

    As an ex-List manager, I appreciate the hard work Ian, Antje and Bob put in every single day. I said it several times in the article. I brought in comments from subscribers to underscore that point. I think they should be compensated and if they needed money, as I said, I would contribute.

    The issue over the contribution request is, to me the perfect example of List owner parochialism, or myopia as I called it in the article. It is clear to everyone that other institutions – the work of which is equally important to the MPN-NET Troika who are themselves suffering from MPNs – is far more deserving of contributions and yet all three claimed “The greatest benefit for all of us would be to donate to the MPN Education Foundation…”

    You may have been spared knowledge of the rift among the three on-line US support lists, but I assure you it is there and seemingly unbridgeable. That it extends to MPNforum Magazine – a monthly that is not a support list and poses no threat to list owner turf, was an issue I didn’t address in the profile. (I admitted bias in the link referencing public disagreements at the very beginning)

    The point of the article is in this paragraph::

    “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…”

    The MPN-NET LIstowners are heroes and warriors but they are not saints. When you first discovered Ruxolitinib/Jakafi you found no reference to MPNforum in the MPN-NET digest…even though we had published the earliest, most comprehensive MPN patient-centered coverage of the historic ASCO Chicago meeting, including photos, charts, interviews with scientists, the Incyte CEO and the principal Ruxo investigators…plus a JAK-STAT animated exhibit.

    MPN-NET, does not publish MPNforum publication announcements. MPN-NET doesn’t refer its subscribers to MPNforum source material. Its relationship with the U.S. Lists is similarly dismal.

    So it’s good you’re aware of the need to survey multiple sources, but wouldn’t it be better if a trusted support source like MPN-NET was less parochial and made that survey a bit easier?

    And, honestly, couldn’t we get a lot more done in the world if we united our small and divided MPN community and made a common effort to raise consciousness and raise funds? As a Subscriber, why not raise the issue?

    Zhen

  9. Mark Beal said:

    I read MPNforum and MPN-net for the informational content and to get an understanding of my disease (PMF, dx’d 1-11, currently on Jakafi after 7 months on HU). I feel like Zhen discounts my ability to take information from all sources without being a fan of one particular group. Frankly, I didn’t know a rift existed until I read it in MPNforum today. I certainly wouldn’t accept on face value the “greatest benefit to all” line from MPN-net, and I would wager that the list-owners would agree that in reality well-placed, SIGNIFICANT levels of research funds would truly be the best place for significant donations. I don’t think the list-owners envisioned that their request for donations would yield huge, corporate or individual levels of capital, but would result in several modest donations which would ensure continuation and maybe even improvement of MPN-net. Zhen’s rant almost implies that the list-owners want to personally profit from this request for donations (which to a certain extent, I wouldn’t mind, given all the hard work they put in in providing their daily forum that has certainly been of a great benefit to me). The bottom line is that I appreciate all of the work of Zhen and the list-owners of MPN-net, and agree that there is a place for both, but don’t think the random comment about the “greatest benefit to all” was in any way a reference to MPNforum or a statement that the list is more important than the research being conducted to more clearly understand our disease, and was a little disappointed in what I feel is Zhen’s overreaction to it. (And on a personal note, I was aware of Dr. Tefferi’s position on Jakafi before I started on it, but chose to go ahead anyway, feeling that I could always change back to HU–which has it’s own risks vs. rewards issues–and have had a great reaction so far. I have been transfusion-dependent, receiving 1 to 3 units of blood per week in order to keep my hemoglobin levels above 10, and now am at a steady 1 unit per week. Other levels are also steady. For ME, Jakafi works (at least for now), but I recognize that it might not for everyone. I know I’m not cured, but my quality of life is better, and I’m holding on–which considering the state of knowledge of our disease, is about all that we can ask for at this time.)

  10. Bravo Zhen! Well said. Let us support each other when we can and avoid disparaging remarks when we disagree.

  11. Hi, Melody…If you go to the search box, sidebar of our home page, top…you can reach the three preceding articles in the series by typing in: 1. Harriet 2. Joyce 3. My Robert (only leave off the numbers). Any problems contact us at ourMPNforum@gmail.com. Thanks.

  12. Can you provide URLs for part 1, 2, and 3 of this series? Thanks, Melody

  13. Arnie McConnell said:

    As someone who likes, and, to a certain extent, relies upon MPN-Net, it would be ungracious not to acknowledge its wonderful contributions to our lives and to our cause. This, of course, is probably the mantra of any sane person.

    That stated, I do find the website to be, well, dull– particularly of late.

    There’s room for more levels of communication within that site. The moderators should moderate, but not so strictly. Language has colors. Speaking purely for myself, I see largely gray on this website that I read almost daily.

    I’m also not crazy about the “memorial” aspect, though I’m sure Joyce was an amazing, caring founder. It’s nice to mention her, but not in the context of “Joyce’s wishes” for us or for the site. The living should not be presided over by the wishes of those who have passed. Me included, when my time comes.

    My health has improved significantly, due largely, I think, to Pegasys and to the aforementioned site. Again, thanks to both.

    But sometimes my spirit cries for poetry, music, and yes, even a little naughtiness as may be revealed in an occasional session with pot, which, for me (block your ears) is medicine.

    My ear-ringing (tintinitis) has been constant for decades (almost to the point where I can ignore it!!)

    Not so with my balance problems, which have gone from acute–an inner ear attack, viral related(??)–a couple of years back, to manageable– and probably due to Pegasys-related wooziness as well. Pot helps, how I don’t know. But I’m seldom depressed and slightly more creative these days.

    Should I ignore my own feelings and “read the label” on expensive pharmaceuticals only?

    Pot, poetry, and music help. And, fellow pilgrims, I am no worse a human than those who blithely sip Manhattans at posh and shamefully overpriced conferences in New York.

    So, please, Zhen, continue on the road that you seem to have chosen. Let all of us speak and be, and particularly, allow us opportunities to express joy and to share notes about healing in ways that the controllers-of-the-world might find challenging.

    They challenge me and my spirit everyday. How about some joyous pushback??

    PS: It meant a lot to me to see actual pictures of Antje, Bob, and Ian. Cool!

    Love and Best Regards to All,

    Arnie

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