Starting in August of last, year, NIH went through the elaborate process of rebranding the program that had until then been known as the Evidence-based Methodology Workshop (“EbMW”). The new shiny brand that emerged after an enormous bureaucratic effort—whose necessity is less than obvious and that would make Monty Python proud—is “Pathways to Prevention” or “P2P.” And here are emails* letting us watch the unfolding of this comedy-drama.
The emails linked to in this post will provide as much comic relief (Just stick with it; the funny parts are in the second half.) as they are bound to provoke some outrage about NIH’s comfort level in wasting valuable taxpayer money on window-dressing projects when ME/CFS desperately needs, more than any other disease, some serious financial commitment from NIH to ME/CFS research. It will never cease to amaze me how there is somehow money to be found for paper-pusher projects, such as this one, and yet nearly no money at all for research of a disease that causes suffering beyond comprehension. NIH’s support for ME/CFS is just not forthcoming aside from the psychosocial Fred Friedberg-type of “research” of the “Efficacy of Home-Based Self-Management of Chronic Fatigue.” And yet, a total of at least 12 NIH employees, including David Murray, Director of the Office of Disease Prevention, and who knows how many hours were committed to this project. Murray, by the way, refers to our disease disrespectfully as “chronic fatigue” (page 74).
But more interesting than this ludicrous name-changing exercise is the fact that the linked-to documents clearly betray the intent of NIH in using P2P for our disease. It becomes obvious that NIH—in utilizing the P2P mechanism—is violating its own P2P rules. Quoting from the document “About the National Institutes of Health Pathways to Prevention (P2P) Program (Page 33):
P2P workshops are designed for topics that … are generally not controversial.
The following major criteria must be met for a topic to qualify for a P2P workshop:
- Have a primary or secondary disease prevention focus.
First off, everybody familiar with the disease knows that it is as controversial as it gets. In fact, in the proposal by the Office of Disease Prevention for holding a P2P workshop for ME/CFS, the topic “controversy” took up a long paragraph (page 76). Of course, this controversy has been purposefully manufactured by HHS, but nevertheless, patients have to live with that surreal reality now.
When NIH’s own rules prescribe the use of the P2P process only for diseases that are “generally not controversial,” using it for the most controversial disease of our time cannot be explained away by attempting to argue that the rule only applies “generally.” That would be letting the exception swallow the rule in the case of a disease that is clearly not suited for the P2P mechanism.
In terms of the disease-prevention focus, that requirement is also clearly not met here. We do not know the cause for ME/CFS nor do we know much about treatment and certainly nothing about a cure. How does one possibly envision prevention at this point?
There can be no doubt that applying the P2P process to ME/CFS violates NIH’s P2P rules. Plain and simple.
Now on to the documents regarding the name-change from EbMW to P2P. From an agency-internal email (page 1):
I think the words Evidence or Research or Science should be in the title somewhere, because they all imply evidence-based assessment going on.
You have to appreciate how, even in internal correspondence, the Feds pretend that they believe their own baloney. Although that is only going to get worse now that they likely understand the power of FOIA better. But evidence-based assessments are the opposite of science when it comes to sparse or biased “evidence,” as is the case with ME/CFS.
And now the fun parts.
For your entertainment, here are some of the new names NIH considered for EbMW (page 2):
Evidence-based Prevention Science Workshop (EbPSW)
Evidence-based Prevention Research Workshop (EbPRW)
Evidence-based Prevention Assessment Workshop (EbPAW)
Prevention Research Assessment Workshop (PRAW)
Prevention Research Evidence Assessment Workshop (PREAW)
More ideas here (page 1):
Prevention Research (PR) workshops
Prevention Workshops (PW)
Or something “Mind the Gap”-y like
Next Steps in Prevention Research
Advancing Prevention Research (APR)
I swear, the “Mind the Gap-y” language is a direct quote.
And yet more suggestions (page 11):
Prevention Research Assessment Workshops
Prevention Research Assessment Program
Advancing Prevention Research Workshops Series
Advancing Prevention Research Workshops
Some internal reactions:
moar words (page 3)
Whopper? (page 7)
And here are the Feds getting obsessed with coming up with acronyms that are an actual word (page 12):
Prevention Research Opportunities Under Development (PROUD)
Prevention Research Opportunities for Development (PROD)
Prevention Research Opportunities Program (PROP)
Gaps in Research Assessing Science Program (GRASP)
Gaps Assessment of Science Program (GASP)
Gaps for Research Opportunities Workshops (GROW)
Gasp indeed! And they were not done yet:
How about PRAWN? I don’t know what N is for but I am hungry. It rhymes with YAWN. (page 6)
Food seems to be a big theme at NIH. Many of you will remember that Susan Maier complained, during the January IOM meeting, about not getting her lunch paid for. I do sort of understand the association with “yawn” though, as I would rather eat nails (Yes, I do watch a fair amount of Pippi Longstocking.) than do “work” that entails *this.*
And just when you thought all rationality had left the agency, an unexpected twist (page 11):
I agree that the acronyms don’t have to spell out a word. It’s nice and cute, but ultimately the priority should be on making sure the name appropriately reflects the program.
Way to get a hold of reality again!
And then there is this mind-blowing disclosure (page 6):
Didn’t we spend hours at my white board trying to do this and got nowhere?
Hours! Nowhere! Wait! What?
Pepe the King Prawn even makes an appearance as a suggestion for the program’s mascot (page 6). And although these folks all likely reside in the DC area, they certainly have the valley-girl lingo—or whatever this is—down:
OMG … I LOVE YOU SO MUCH (page 6)
WOOT WOOT (page 14)
Best. News. Ever. (page 14)
Yay go team!! (page 16)
me likey (page 27)
That “Woot Woot” formatting is copied from the actual email. The “me likey” is a lot less funny if you consider the racist undertones. Both of those remarks (together with the “I love you” comment) are from Paris Watson, Senior Advisor of the Office of Disease Prevention. The P2P was her “brainchild” (page 9).
Once a consensus on the new name was finally reached, here is how it was sold to Murray (page 14):
The title “Pathways to Prevention” speaks directly to the goal of the program – providing a mechanism to advance prevention research.
Right, because that’s how it’s done at NIH. If you go straight to preventing a disease, you never have to worry about the etiology, treatments or a cure.
And then there were burning questions regarding loose ends, such as:
Word selection: Does each workshop “result in” or “produce” an evidence report and panel report? (page 21)
You cannot be serious!
And, of course, a new logo was needed (page 27) and a bunch of documents had to be revised to reflect the change from EbMW to P2P (page 25):
1. P2P Summary for Web
2. P2P FAQs for Web
3. P2P IC Coord Responsibilities
4. P2P Panel Cair Responsibilities
5. P2P Panelist Responsibilities
6 P2P Working Group Responsibilities
7. P2P Web Pages (landing pag for workshop planning process)
8. P2P EPC FAQs
9. P2P Timeline (.ppt)
Aren’t we all glad that NIH has the money and manpower to “invest” in such a high-priority project, the EbMW-P2P rebranding? And the resources to waste to make fun of patients whose lives have been ruined? Quoting Jessica Wu, a Fellow at the Office of Disease Prevention (page 2):
… of course, there’s always the Watson Program. Or we could do something like reality TV show voting, complete with texting and 800 numbers.
And Paris Watson in reply (page 4):
I am always happy to make a game show out of this, as Jessica recommended. I have a fancy dress all ready.
I think I’ll have some prawns now.
*Please remember that the only reason we have access to any of the P2P documents that I have been, and will continue to be, publishing is my winning the IOM lawsuit (except for those documents I published with my first blog post on the subject). Without that, we would not be privy to any of this information. While my P2P FOIA request was separate from my IOM FOIA request and subsequent lawsuit, NIH sent the P2P documents shortly after losing over IOM in court. There is no doubt in my mind that this was a damage-control move since the NIH FOIA staffer knew that her meager production in response to my P2P request was inadequate, similarly to her and the HHS’s FOIA staffer’s production in the IOM case, which the latter got called out for by the court in its ruling (because, even though her FOIA violation was just one of many, it was one of the most egregious ones in this case). The NIH FOIA staffer was trying to avoid meeting the same fate as her HHS counterpart. It is a sad state of affairs that NIH needed an embarrassing loss in court before providing these documents, something the agency was obligated, under the law, to produce without dragging a patient through expensive litigation.