Showing posts with label guest post. Show all posts
Showing posts with label guest post. Show all posts

Saturday, November 13, 2010

XMRV, ME/CFS: Cover the Story!

Another guest post by Larry Gilman.  (Don’t worry, the next one will be by Priscilla!)
Democracy Now! is a superb, 1-hour, daily news program that typically gives substantial coverage to stories and lets people talk at length about their knowledge, rather than deliver a few soundbites.  What follows is the text of a story idea Priscilla and I just sent to the staff.  It would probably help if other people also expressed to Democracy Now! their belief that this story needs coverage: the link is here. — Larry
-----------------------------------------
Dear Democracy Now!,
I’d like to alert you to a story idea.
It’s a mixture of recent science news, US government malfeasance and indifference dating back to the 1980s, and the possibility that an infectious, disease-causing retrovirus (or group of closely-related retroviruses) has established itself in 3–9% of the US population partly due to that malfeasance and indifference.
The latest round of the story began with the publication in the prestigious journal Science of an article announcing an association between a recently-discovered retrovirus, XMRV (only the third known infectious retrovirus in humans, HIV being the most famous) and “chronic fatigue syndrome” (CFS, more recently acknowledged by the less trivial-sounding term “myalgic encephalomyelitis/CFS” by a group at the National Institutes of Health (NIH); see under “Name Change” here).  Full Science article here.  Note the hair-raising last sentence: “several million Americans may be infected with a retrovirus of as yet unknown pathogenic potential.”
This was especially newsworthy because the US Centers for Disease Control (CDC) has been doing its best to deny a physical, as opposed to psychiatric, cause — most especially to deny the possibility of an infectious cause — for ME/CFS since the 1980s.
The story even got coverage in some mainstream media (e.g., here and here).  A number of “negative studies” have since failed to confirm the Science results (indeed, in what is perhaps a sign of methodological problems, most have failed to find the new retrovirus in anybody at all), but a study by NIH scientists has confirmed them.  Scientific debate continues. 
The history of ME/CFS and of the CDC’s role in doing as little as possible about the disease started in the 1980s.  Federal investigators have found that the CDC funneled millions of bucks allotted for CFS to other purposes: “However, in 1999, the Inspector General of HHS reported that CDC had expended $8.8 million on activities unrelated to CFS and $4.1 million on inadequately documented indirect costs—as much as half of the funds the committees recommended for CFS” (quoting a GAO report).
The authority on all this history (and an ideal guest for any piece you might do) is Hillary Johnson, author of the book Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (1995, 2006).  Her NYT op-ed on the CDC’s awful history on this subject is here.  Johnson’s work triggered the federal investigations of the CDC mentioned above.  Her website is http://www.oslersweb.com/.  There she publishes the text, obtained I believe through FOIA, of a letter posted on a CDC bulletin board in the late 80s mocking CFS patients.
What’s the ongoing story?  The NIH and CDC are still not allocating sufficient funds to this disease, which afflicts at least a million Americans according to the CDC itself (prevalence estimate here).  The NIH is spending no more in 2010 on ME/CFS than it is on studying hay fever (by its own estimate)!  In 2010, hay fever got $1 million of ARRA money through the NIH, but ME/CFS a whopping $0 (same source).  And this for a disorder, ME/CFS, conservatively estimated to cost the US economy $20 billion per year  — not to mention untold suffering.  It has been said that “this is a disease that erases lives.”  And leading retrovirologist Dr. John Coffin has warned that “the momentum on [XMRV research] will tend to run out after a bit without additional money being put into this at some level or another.”
Pretty freakin’ scandalous.
One of the scientists who did the research that broke in Science a year ago is Dr. Judy Mikovitz, who is eminently interviewable.  She can be contacted through the Whittemore-Peterson Institute — the small, privately-funded foundation that did the breakthrough work that the NIH and CDC have failed to do for 25 years and that was published in Science in 2009. 
So —  I hope you will agree that there is tremendous need for more coverage of this amazing story. 
In any case, I remain profoundly grateful to the whole Democracy Now! team for all your work. 
Sincerely,
Larry Gilman

Saturday, June 19, 2010

Black Butterflies: Juneteenth, Galveston Style

A guest post by Mesha Thomas

I remember riding and waving as a fresh-faced teen, Queen Elizabeth-style, with my fellow young hopeful peers in the back of a pink-and-green streamer adorned truck turned parade float.  We were the Pearlettes, and we were mentored by the local chapter of a historically black sorority.  We were one of many contingents along the route.  Several local school bands dotted the parade, giving this proud snake winding through the streets of Galveston its brassy and booming voice, the searing heat rising up from the asphalt.  Our Grand Marshall was often the mayor, who sat atop a car with its convertible top down.  Other city officials and business owners of all backgrounds and races from Galveston were featured atop or within fancy cars in the parade as well.

At the end of our route, a community-wide picnic awaited at Menard Park on 28th Street and the Seawall—on the waterfront, in the center of the Galveston Island beachfront.  Tapping our feet to live blues, jazz, or gospel acts performing on the outdoor stage, we shared heavy, buckling aluminum platters of all varieties of BBQ chicken, brisket, ribs.  Not to mention the accompanying pasta and potato salads, deviled eggs, green salads, casseroles, pound cakes, and various pies.  In addition to that, there were mounds of whatever seafood was in season: often crabs caught on the jetty or shrimp from the wharf, caught and boiled that morning with plenty of potatoes and corn . . . . all of it highly seasoned and cooked in the same giant pot.  Families visited each other’s picnic areas, exchanging food on paper plates that could never handle their loads.  Something else cozy and intangible used to happen . . . I felt like we were all one big family. 

It’s that time of year where I daydream about Juneteenth, which some call Emancipation Day.  To me, the old “it takes a village” adage was demonstrated during these Juneteenth celebrations in Galveston more than any other time of year.  With its roots in Texas, Juneteenth has over time grown in popularity across the Gulf Coast and the United States.  Now officially observed in 26 states, Juneteenth, in my opinion, is the most significant and uniquely historical event originating from the Houston-Galveston area.  Juneteenth (from June and nineteenth) began on June 19, 1865, when Major General Gordon Granger read General Order No. 3 in Galveston proclaiming "all slaves are free."  Galveston, largely due to its geographic location, received this critical information more than two months after the end of the Civil War.  Juneteenth is honored by many in similar ways as July 4th – with parades, pageants, family gatherings, picnics, religious observations, and live music . . . all to celebrate freedom and commemorate the abolition of slavery in Texas.

When I was growing up, if Juneteenth fell on a week-day, African Americans typically took the day off work to participate in the festivities.  The celebrations in and around Galveston are a large part of my memories of summertime youth, and of coming of age as a young woman in the South.  The pageants in particular were highly anticipated and thoroughly dissected and discussed for weeks or even years after.  The Juneteenth pageant was in many ways our version of homecoming or a prom-queen parade.  However, our “it girls” wouldn’t win this pageant on popularity alone.  The required wardrobe, congeniality, and even reputation in the community were considered amongst the judges.  The judges were local and highly respected African-American educators, school board members, church pastors, and well-known musicians . . . . considered the VIPs of our community.

I think back with a grin on the talent segment of the program.  It was closely scrutinized; and over the years various versions of inspirational songs like “The Greatest Love of All” were sung.  I could count on a sassy reading of Maya Angelou’s “Phenomenal Woman” as well as some young lithe contestant leaping across the stage in interpretive dance to the Deniece Williams song “Black Butterfly.”

I live in a large metropolis now, Los Angeles.  I’m quite sure there are Juneteenth celebrations here.  I hear about concerts and picnics in Inglewood, Compton, and Long Beach on the radio.  My roots are not here, and I’m not connected to any of the families, groups or neighborhoods that are likely to be celebrating Juneteenth, so I (admittedly passively) don’t participate.  I struggle with this because in a country where so many of our traditions and heritage as African-Americans are falling by the wayside, I sometimes wonder, how long will the Juneteenth traditions and celebrations survive?  This year, like most of my adult years away from Galveston, I will light a candle in honor and observance of my ancestors and think back on my days along the parade route in Galveston . . . and smile.

------------------------------

Mesha and Priscilla were high school classmates in Galveston, Texas.  Mesha’s writing on cultural happenings in Los Angeles can be found at laculturemaven.com.


------------------------------


If you wish to read more on Juneteenth, here are some resource:

www.juneteenth.com/
www.juneteenth.us/
www.tsl.state.tx.us/ref/abouttx/juneteenth.html
www.elecvillage.com/juneteen.htm

Monday, April 26, 2010

Able to Not Believe: Guest Post by Alan Shefsky

I don’t believe in God.   At least I don’t believe I do.  Which is to say that for the most part I travel through my days reasonably contented in the idea that the world of rocks and plants and beings, and the vast universe besides, is what there is.   This isn’t to say that I think that there is only the physical, the tangible; rather that the world of the not-tangible, the universe of mystery and poetry, of love and dark matter, are tied to and inseparable from the physical.  There is love because there are lovers, and except in the rhyming sense it isn’t tied to the heavens above.   If there is transcendence it is of a human kind; I don’t believe in transcendence in any metaphysical or spiritual sense.   I believe we are born into a life of potentially profound wonder, and I believe that when we die, alas, we die.   Precious, then, is this life and its moments, truly painful the times of darkness.

How to account for my non-belief, my belief in a world of no-God?   I am reasonably sure that it has always been with me.   I grew up in Reform Judaism, attended religious school and Hebrew school, had a bar mitzvah, and although God-language was certainly present, God-presence—for me— was not, nor God-existence.   The idea, to the extent that it struck me, simply never struck me as real.   Still, being Jewish struck me as real, and so, Jewish I continued and continue to be.   There are of course some wrinkles in being Jewish and believing in the non-being of God, and I haven’t smoothed them all out, nor do I expect that I will.   Yet I am able to live my Jewish-ness, and to study and reflect on it, such as I do.  And I am able to not believe.

There are wrinkles, too, in being a Jewish non-believer in God and having as a very close friend a person who is a Christian believer in God, and ours a friendship in which deep and wide-ranging discussions are a central, delightful part.  Of course, wrinkles in a friendship aren’t necessarily a bad thing; indeed the wrinkles, in time, become part of the texture of the friendship.  And too, we learn from each other.

This friend is (you may have guessed) Priscilla, the author/artist of this very blog, who is among other things “a theological kind of gal . . . incarnational and sacramental . . .”   She is a person who engages deeply and questions radically matters of religion and faith, someone for whom religion and faith provide meaning and nourishment, and for whom God’s presence is, at times, present. Her faith and her practice are part of who she is, and the kind of friend she is, and how she lives.  

My friendship with Priscilla is also, happily, a friendship with her husband Larry, with whom I’ve been known to engage in a conversation or two on matters sublime and ridiculous.   He is, also, a theological kind of guy in his own right, as well as a man of letters (and numbers), a thinker and writer on matters of faith and on a vast range of other topics.

So it is that I come (finally) to the topic of this present essay, a consideration of the just released book, “God is Dead” and I Don’t Feel So Good Myself: Theological Engagements with the New Atheism, in which a short story by Mr. Larry Gilman appears.   The book, edited by Andrew David, Christopher J. Keller, and Jon Stanley, published by Cascade Books, seeks to respond, from a Christian perspective, to the new crop of atheists whose books have splashed into bookstores recently (those by Christopher Hitchens, Richard Dawkins, Sam Harris, etc.), as well as simply to explore matters of faith and religion.   Besides Larry’s story, the book is comprised of essays, interviews, poetry, and visual art. The pieces touch on a number of different points on the theological and philosophical map, from Augustine and Aristotle, to Nietzsche and Kierkegaard, to Thomas Merton and Wendell Berry.  In the essays that treat of the New Atheists, the general consensus seems to be that their arguments are so weak as to hardly merit response, though they are in fact taken to task for, among other things, their poor understanding of theology, their lack of depth, and their tendency to ramble.

I confess, however, to being far more interested in the pieces that explored faith in the writer’s own terms, not so much in the context of response.   Also, as a poet myself, I was drawn to the nuance and metaphor in the several poems, the visual art, and of course the one piece of fiction, Larry’s lively “The King of the Mice: An Earnest Fable for My Atheist Friends.”

One challenge for me in reading these pieces was simply the unfamiliarity of the terrain.  These are, after all, Christian-centered writings, so the language and the references are quite different from what I’ve encountered in Jewish theological and historical texts.  There is also the way that atheism as a concern exists differently in Christian than in Jewish history and imagination, where practice perhaps receives more attention than belief, and identity and continuity—and perceived threats to them—tend to be the more pressing concerns.  Further, it seems clearly to be the case that the New Atheists, themselves coming from a Christian background and from within largely Christian societies, position themselves especially against religion-as-Christianity.   So for me as a Jew, it can feel like I’m reading about someone else’s battle.

Additionally challenging to me were those arguments — theological and/or specifically Christian — that were stated in absolute terms.   It is compelling to read of God as the ground of being, and to imagine the writer’s profound experience of that grounding presence; also to read of the Christian experience of faith, of community, of love.   It is less compelling to read that those not so inclined or so moved are, therefore, groundless; that their lives can be defined only in terms of absence or a not-choosing.   Absolute certainty is fascinating to see, to try to imagine, but in the end I cannot help but find it disagreeable.   I don’t believe in God, but I also don’t believe in (that is, agree with,) atheistic — or theistic, or Christian — certainty.

By way of providing a more specific look at God is Dead, and I Don’t Feel So Good Myself, here are some notable excerpts. 

D. Stephen Long, writing in the Forward, considers various kinds of atheism and asks:  “Is all such atheism worthy of engagement?  And how should Christians in particular respond to its resurgence?”   He continues, in effect laying out the terms of the engagement for many of the book’s essayists: “No one should be surprised by its resurgence.  A-theism is a parasitical consequence of the ‘return of religion,’ a return that continues to surprise persons who seem confused as to how to respond to it . . . .  That reasonable people still have faith — and actually practice it — strikes some as odd.  Many of these skeptics were convinced by the narratives spun by the great masters of suspicion, narratives insisting that the gains of the Enlightenment would surely be irreversible by the twenty-first century and that these gains would result in reasonable people eschewing belief.” [xiv]

Ronald A. Kuipers also references the Enlightenment in his essay “Faith as the Art of the Possible: Invigorating Religious Tradition in an Amnesiac Society”: “I have been trained in an intellectual tradition that rejects the Enlightenment belief in the possibility of religious neutrality, that is, of anyone not being religious in some sense.” [146]  I guess I remain under the Enlightenment’s sway, as I am inclined to think that it is indeed possible to not be religious in any sense, and that the perception otherwise might be caused by religion-tinted glasses.

Merold Westphal, in his insightful essay “Atheism for Lent,” discusses at length the philosophies of three major “masters of suspicion”: Freud, Marx, and Nietzsche.   Westphal doesn’t attempt to respond to or refute these philosophies; rather he recommends that believers themselves engage in a kind of suspicion, a “Lenten self-examination leading to repentance.”  His message is an affirming one, leading him to caution against cynicism, lest “in practicing suspicion we may lose sight of grace, God’s ever-present help in forgiving us and creating within us a clean heart.” [77–78]

As for the “New Atheists,” whom the book seeks to engage, the typical sentiment is expressed here by Stanley Fish, interviewed by Stanley Hauerwas: “They think that they are refuting something, where in fact they haven’t even taken seriously the existence and primacy of that which they think to refute even as a possibility.  In a way . . . I find their work profoundly uninteresting.” [111]

Charles Taylor, interviewed by Ronald A. Kuipers, elaborates:  “I happen to have quite a negative view of these folks.  I think their work is very intellectually shoddy.”  He continues, “They all believe that there really are some knockdown arguments against belief in God.  And of course, this is something you can only believe if you have a scientistic, reductionist conception and explanation of everything in the world, including human beings.  If you do have such a view that everything is to be explained in terms of physics and the movement of atoms and the like, then certain forms of access to God are just closed.  For example, there are certain human experiences that might direct us to God, but these would all be illusory if everything could be explained in scientistic terms.” [126]

The idea of atheism as being somehow essentially and necessarily linked to “reductionism and scientism” is an idea that occurs in several essays, and it is one that I believe draws too simple a dichotomy between a theism that respects mystery and transcendence, and an atheism that appreciates only cold, hard facts.   For my part, I am interested in the experiences that “might direct us to God,” or that might instead direct us to a profounder sense of meaning and of being.

Taking the criticism of atheism even further is Ben Suriano, in his essay “On What Could Rightly Pass as a Fetish,” in which he criticizes the “popular valorization” of atheism, which “chooses to ignore that the predominant form of modern atheism is deeply dependent upon and perpetuates an ideological, and therein idolatrous, construction—one that is itself not a progressive coming-of-age or a sobering up, but rather the preservation and refinement of a pagan trajectory of power seeking.” [27–28]

Another of the book’s recurring themes concerns the ideas that atheists hold about religious belief and seeks to respond to these ideas and present religious belief more clearly.  Thomas Inchausti writes, in his essay “Thomas Merton’s Apologies to an Unbeliever”: “The god they do not believe in is certainly not a god I ever believed in . . .  Merton believed that the religious problem of the twentieth century was twofold:  (1) atheists identify faith itself with the most mindless expressions of religious fanatics, and (2) the ‘faith’ many ‘believers’ have kept is sentimental and self-aggrandizing . . .” [4]  Inchausti explains, “Merton would agree with those atheists who deny God’s existence as some sort of super ‘decider,’ concept, or thing, but he would disagree with those who then draw the conclusion that God, therefore, does not exist.  What does not exist is the God-object.  What does exist is a presence revealed in and through the love that rises in us out of a ground that lies beyond us.” [6–7]

Again, it is this kind of exploration of belief that I find most compelling, more so than description of atheist non-belief.  Also and especially compelling is description of how belief might manifest itself, how religious practice might enhance the practice of living.  Ronald Kuipers, in the essay noted above, discusses
what it might mean to partake in and pass along a religious tradition . . . that, when healthy, invigorates its members for the ongoing task of healing and restoring . . .  society . . .  Membership in such a religion. . . can, at its best . . . inspire a kind of faith that I will describe as ‘the art of the possible.’  Such a faith can give those graced by it the courage to shape their lives in relation to the mysterious contours of what the agrarian poet, novelist, and philosopher Wendell Berry calls ‘the human definition.’  Although such an art of living does indeed call upon us to relinquish the push for cosmic mastery that has come to dominate our species, such a responsive, creaturely life involves much more than merely acquiescing before some authoritarian limit.  Crafting such a life should be understood, instead, as a work of love that makes space for the beloved, a life that readies a place that may be graced by new and unpredictable redemptive possibility.  [147]
It is just such a life, just such religious practice that I see Priscilla and Larry engaged in.  And so it is in my knowing of them in this context that I come to the reading of this book and the writing of this essay.  In this context, how not have deep respect for belief and religious practice?  Also, knowing Priscilla, and knowing the ways that her religious practice and her illness “practice” delicately, deliberately intermingle, how not consider the place of my own chronic illness in my coming to or moving from belief, and the place of non-belief in my experience of illness?  What might “ground of being” and “being in the presence” mean when one’s being, in the present moment, is so familiar to pain, when one’s very ground feels unforgiving?

Recently in one of our meandering conversations, Priscilla and I talked about gratefulness, about what it means to be grateful and, especially, whether one can experience it — and express it — without having in mind, believing in, a transcendent ground/source of being.  Priscilla thought yes, certainly yes; I thought probably no: no God, no “one” to be grateful to.   And still I am grateful.

Alan's poetry and other writing can be read on his website, alanshefsky.com.
 
Creative Commons License
Cartoons at Heaven in My Foot are licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.