Is it possible to forgive and move forward without an apology?
A must-read blog by Hillary Jihnson, author of Osler’s Web and The Why, which ends with:
At a day-long homage to Ian Lipkin on April 3, for instance, where luminaries of the infectious disease world celebrated the career of the Columbia University virus hunter, Avi Nath joined a panel about ME. At one juncture, Nath praised the ability of Lipkin to inspire trust in “…even the population of ME/CFS as difficult as they might be…”
It’s disturbing that an NIH researcher of his pay grade is carrying this old trope into the present day to an audience of infectious disease specialists, especially after the study he just helmed found biomarkers. Government scientists have felt free to characterize ME patients as “difficult” or worse since Stephen Straus owned the narrative. Straus opined in countless grand rounds how “unpleasant” it was to address the complaints of ME sufferers. Simon Wessely and other British ME psychiatrists went further, in Wessely’s case claiming that patients were as dangerous as animal rights extremists. Wessely also told the BBC in all seriousness that he felt safer in Iraq and Afghanistan, where he was unlikely to encounter an ME advocate, than London.
Vicki Whittemore, sitting on the same April panel as Nath, volunteered that when she was hired in 2011 to take on ME at the NIH her superior asked if she would be willing to work with ME advocates “who are sometimes a little challenging,” in Whittemore’s delicate phrasing. Was interacting with difficult or, ahem, challenging, patients be a condition of the job? Would she, being female, be willing to be NIH’s patsy, leaving male scientists the freedom to proceed with the knowledge they would be relieved of contact with patients?
It’s fascinating to me that government scientists speak with admiration about AIDS activists of the 1980s and 1990s. The latter stopped traffic on Wall Street, burnt effigies, threw condoms filled with ketchup at the NIH scientists on the Bethesda campus, and labeled Tony Fauci a murderer. When a few ME patients criticize an NIH paper on Twitter, the lead investigator has a melt-down. Did he, in fact, threaten to pick up his marbles and go home?
Where are the heroes? Is EVERYONE so worried about obtaining grant money from NIH that no one will say anything about this hypocrisy? Or call out the denigrating, negative characterization of an entire patient population estimated to be near four million people in the U.S.? Is money really the bottom line?
Perhaps the government’s toxic characterization of ME patients persists because so many patients are women. Given the bro science that holds sway at NIH, maybe it’s easy to obscure the primary issue. But when you put the gender issue aside, there is still a disease that needs solving.
Being “difficult” is not part of the sign-symptom complex of ME. But informed patients cannot help but recoil from decades of malfeasance, negligence, defamation, poverty and physical agony in the face of an unresponsive federal health establishment. If anything, patients need to be greatly more “difficult” rather than less.
I’ve seen a glut of Jane Goodall quotes on the Internet lately. Here’s one: “It actually doesn’t take much to be considered a difficult woman. That’s why there are so many of us.”
How can anyone who knows very much about this terrible history look upon anything the NIH does today with a less than jaundiced eye, especially when the winking, defamatory banter remains unaltered and broad disrespect of patients continues?
It strikes me that before NIH can expect gratitude for anything, administrators at the highest executive level of the NIH must acknowledge that NIH made a profound, decades-long mistake with ME. Further, they need to issue a formal apology to the millions of patients who have been harmed by that mistake, as well as to the shattered survivors of patients who have died, including especially their children. NIH especially needs to abandon any effort to protect the legacies of men among their ranks who acted like thugs in past decades. As journalists and medical historians and medical ethicists peel back the reality, all will be revealed to the public, anyway.
No one individual need be named or blamed in this so-far imaginary apology. NIH need only say there was an institutional failure of scientific judgement, a harmful bias that spread throughout the agency. It needs to admit it took far too long to rectify these failures.
In short: biased, slanderous authority figures no more. The dysfunction has been inside the NIH, not in the patient population.
To be credible, the wordsmithing of this fantasy apology is up to NIH. One critical word must be employed, however: Sorry. As in, “We are sorry we failed. We have learned from that experience, and we will try not to fail you again.” The apology I envision would require sincerity equivalent to the depth of feeling Nath used to chastise patients and express his own trauma.
Nath is upset by criticism; he wants it to stop. Right now. But the scales of justice tell us who has the weightier grievance by far. Instead of asking for gratitude, Sorry might be the balm to start the healing.
The NIH may have the power to wipe the slate clean. Does anyone at NIH have the wisdom to do so?
Source: The World of Osler’s Web, Hillary Johnson
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