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.
Thoughts About M.E. 
“Bureaucrats gone bonkers delightfully create deceitful and derogatory study design.” 😉
Thanks for the laughs, and even more thanks for releasing these documents to the public Jeannette! Your winning lawsuit clearly has rattled the Feds’ cage.
Rattling is one thing; opening the cage door is another.
People paid by the government to sit around in a room and come up with silly acronyms? What a disgusting use of taxpayers’ money when there are people suffering severely with this illness. This really burns my butt.
Reblogged this on Short Blogs for the Distracted……….
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I have a much better name and acronym. P2theP. Power to the People! http://youtu.be/RtvlBS4PMF0 – song by John Lennon; Power to the People.
It’s time that we rise up and seize power for the patients. They will not get away with this. Every single bit of information that you uncover, Jeannette is important and it will come back to bite them. Thank you.
Right, Gabby. I hope your words will become truth.
Thank you for your hard work, Jeannette. I find all this incredibly disturbing (on so many levels), but am grateful to you for everything that you’ve done to bring it out into the open.
WHAT buffonery! AND at the cost to patients’/citizens’ lives! Their actions and behaviours are so off the mark and UNprofessional.
Gonna catch up on some more of that reading–many thanks, Jeannette 🙂
OOOPS — Buffoonery !
WELL DONE!! The way you wrote this is perfect. I mean, really, can you take the process as grave digger serious when it is so shallow? WITHOUT SUBSTANCE? OMG. So funny. Now that a chunk of the wall is cracked, water can eat through to rot the rest. Any more metaphors, people? Anyone, Anyone?
What I love about this aside from plucking feathers off the goose is that the community has a person(s) who can, with a great deal of work = energy, use the skills s/he was born to use. MANY OF US have skills and so much to give to our families and to the community. We are doing it every day. Some gifts are not known and seem small, like people sending quilts to those going through harder times. In addition, most things get done with the encouragement and a boost from other people.
I talk to people who feel like they do not deserve space on this earth. It is so sad and many do cannot begin to understand the significance of this win. They face the daily grind, just as the rest of us do, but do not have access to follow the story. Also, they tend to undervalue self which always happens when a person is vulnerable and suffering and goes without any kind of support.
Rattling the cage comes first and soon, more stuff falls out and then it is either broken or empty. Ding dong the witch is dead..oh..sorry, another story, but it had to happen for Dorothy to get to OZ. THANKS to you all.
Excellent work, Jeannette! Thank you for uncovering and bringing it to the open. Thanks so much for all your efforts and hard work!
Page 67 FOIA shows that Opthalmologists etc..should NOT be practicing out of their AREA of expertise as well as people who are NOT MD”s! The paper trial demonstrates a very very incompetent bunch and not to mention criminal!
Absolutely. Well stated.
Thanks, Jeannette, for all your efforts in exposing all this silliness I would say if it weren’t so important. Apparently, it’s not enough to deal with a horrible illness which has taken so much of our lives away. Why such blatant disrespect heaped upon neglect?
As Michael Allen noted, these emails lay bare the incompetence and malign clownishess of the supporting players. They point to the decades long bureaucratic nihilism that has shaped ME policy to such catastrophic effect.
If Paris Watson needs something to wear to the party, may I suggest sackcloth…
Thanks for your work.
It would be interesting to know what they are thinking as they read these blogs. I’m sure some of them are. What an outrage that we should have to deal with this after so many years. They are so pathetic, it makes me wish each one of them would get sick, if only for a year. It’s impossible for me to understand what the real reason is for holding us in such contempt. To think that we as tax payers actually helped to fund this is wrong in so many ways.
Thank you, Jeannette. I don’t think there will ever be a way for us to thank you in the way that you deserve. But I hope you know how much you are appreciated.
It is disgusting to see how NIH blow taxes by discussing ridiculous acronyms trying to grade up their unscientific efforts to bury ME research and eventually to eliminate Myalgic Encephalomyelitis. At the same time about 17.000.000 patients are suffering from ME all over the world, among them many children very severely affected with violent pain, many of them spoon-fed, some even tube-fed, unable to walk, to move, to read, to watch TV, to do education and social life, some of them even unable to think and to daydream due to their neurological symptoms caused by brain anomalies, and most of them unable to participate any part of normal life. But all we hear from NIH is “woot woot” … Completely inappropriate!
Thank you so much Jeannette for your very hard work (at great cost to your own personal health) in exposing the indifference and corruption of these government agencies who allegedly work on behalf of the community of ME/CFS patients.
It’s very sad, but it seems unlikely that no one in government will ever respect the suffering of the ME/CFS community unless and until they fear us. Now perhaps, if they cannot be motivated by compassion and integrity, they may at least be motivated to chart a different course, if they begin to fear that their corruption, which dates back decades, will be further exposed.
Corruption, lack of integrity and apathy are never surprising in any bureaucracy, yet one hopes that our government can do better, and would aspire to a higher standard, especially given that the ever-suffering and de-legitimized community of ME/CFS patients these agencies are allegedly serving has been thrown (and still languishes) under the bus, for several decades now and counting.
Thanks, Jeannette. They’ve been appropriately roasted. Apparently the requirement that panel members be disinterested also applies to the bureaucrats. Normal human curiosity should have led them to understand the horror of this illness which, one would think, would make this exercise not so fun. Strange culture.
Many thanks Jeannette and team. From the documents you have released from your FOIA lawsuit, it is quite clear our government is not working to help those with ME/CFS.
Once again, great work Jeanette and Thank You!
And to all of those who have commented so far I have to say…me likey! (sorry couldn’t resist).
Wow! Talk about shedding light in dark corners…The community is watching this full-time and look forward to more revelations about the well-paid bureaucrats who apparently are motivated only by the success of their own careers. The light is on now. And it will stay on until these “public servants” actually give a “woot woot” about the very ill people they are supposed to be helping.
Hillary Johnson writes in the foreword of *Plague,* “As recently as December 2013, one newly-retired NIH scientist was asked by a patient at a medical conference in New York City what the NIH leadership really thought about this disease. After a pause in which he seemed to be weighing his words, the scientist replied, unsmilingly, ‘They hate you.'”
Indeed, the documents in this blog are evidence of the hate and contempt NIH feels for us. Our ruined lives are just one big joke to these people. And yet, they keep collecting taxpayer money. Shame on them!
Thank you, everybody, for chiming in here. I really appreciate it because what we are witnessing here is disgusting. And I think it is important that people make their feelings about it known.
I don’t have it in me to reply to every comment, but I wanted to second what Rebecca said (quoting Hillary quoting a former NIH employee): NIH HATES US!
They hate us with a passion. They will never do anything for us, except continue trying to bury us.
The contempt by government employees (paid with our taxpayer money) that these email exchanges show–and remember, we have not seen the emails or memos, etc. they destroyed or locked away or the redacted parts–is a disgrace for this country.
H u m a n R i g h t s ! ! !
HATE Crime !!
Even worse–this HATRED, bullying, intimidation, abuse and threats by government ‘HEALTH CARE’ agencieS are against a seriously ill group of patients.
In NO way is this ‘health care’ and ‘care’ of patients!
So much for the Hippocratic Oath of DO NO HARM.
“How about PRAWN? I don’t know what N is for but I’m hungry. It rhymes with YAWN. Why did you include me on this? I’m useless.”
To the writer of that e-mail – Don’t be so hard on yourself. At least you admit to being useless which none of the rest of them do, although that is exactly what they are.
Thank you so much for your hard work, Jeannette. I can’t possibly read it all because I’m too ILL. M.E. has destroyed my cognitive ability, as well as everything else in my life. Clearly, the NIH is not even slightly concerned about how serious this disease is. 3 decades later and still the same neglect, disinterest and disrespect by everyone – NIH, HHS, CDC – all of them. Disgusting.
All I can think when I read this garbage is that every moment these people are messing around is another moment of patients’ suffering.
I suggest that everyone who is able to do this, post a link to this page on your web site, any forums you belong to, anywhere you can on the internet.
Use the words P2P and Pathways to Prevention in your links.
Doing so will help boost this page to the top of search engine results so that people searching for P2P or Pathways to Prevention will be more likely to land here.
Thank you again, Jeannette. I share your concern that there are likely emails deleted, locked away or so heavily redacted that we’ll never know the full extent of this sh**.
……………………………..
Paris Watson: “I am always happy to make a game show out of this, as Jessica recommended. I have a fancy dress all ready.”
Thanks, Carrie. And thanks for adding that Watson quote. Also to the others who quoted it above! It fell through the cracks. Will add it to the post above.
Well, I admit I’m curious if she bought her dress at Gap-y. 😉
😀
I think they assign the stupid people to work on CFS. What federal employees implicate themselves by making a mockery of sick people **in written communication that is by right available to the public**?
I wish we could cross the NIH off of our federal tax bill.
Paris Watson wants to make a game show out of this and has a fancy dress all ready. Ha. That is so amusing. To bad, Paris, that you don’t understand this disease or you wouldn’t be making sorry jokes like this one. I think it is a d@mn shame you don’t get ME/CFS, actually come down with it for a few years. By doing so, you might–and might is a big word, here–you MIGHT be able to gain a clue about the extent and severity of this illness. With a firmer concept of this disease, maybe your wise cracks will at least have a little more maturity. One can hope, anyway.
They are hilarious in their buffoonery. Except it is tragic for us.
Thanks for your hard an brilliant work, Jeanette. Has this been sent to a few journalists? Even if they do not look at it from the ME perspective, the material is an exhibition of government uselessness, frivolity and wastefulness. Many journalists should be interested in this, if they have not been to cowed.
“The fish rots from the head down.” And that is what is going on, here. These bimbos don’t know one thing about this disease, nor do they care. This isn’t just incompetence. They actually DO have a negative attitude toward this illness. So here is the question: where does that negative, frivolous, dismissive, condescending attitude about ME/CFS come from? I think it comes from people who are trying to please higher-ups, and it probably goes all the way to the top. Fauci? Are you listening?
I understand that there can be banter sometimes when coming up with acronyms – which obviously the group were trying to do.
However what you have uncovered Jeannette, just feels wrong… reading these suggestions does not make me feel as though these individuals were on our side. I mean GASP? And PRAWN? rhyming with YAWN? What were they thinking?
I’m sure the PACE trial (UK) was intentionally named to cause confusion with the concept of “pacing” used by the patient population. The PACE name certainly caused me a moment of confusion when I started to seek answers for my illness after onset in 2012.
I guess the real find here however is that the P2P process was not supposed to be used for something controversial… and ME has certainly been made into a controversy. It’s not controversial to me. In my view it’s simple – I’m very ill, I can’t work, I can’t access treatment, and I’m left to find out what helps from other patients like myself.
Thank you Jeannette for everything you are doing. This affects all ME patients worldwide, and this particular voice of thanks is coming from N.Ireland. xx
“Paris Watson: ‘I am always happy to make a game show out of this, as Jessica recommended. I have a fancy dress all ready.'”
“Let them eat cake” — isn’t it? We live in The Hunger Games, where bureaucrats make a game of marginalization, women’s, men’s, and youths’ pain, isolation, poverty, and death — except they aren’t planning for any winners among our population.
Great job, Jeannette!
Jeannette, your humorous commentary on these bureaucrats’ ludicrous banter gave me the laugh of a week. Then the tragedy hit me. This juxtaposition of their comedy and our tragedy does not bode well for any of us. Make no mistake, these people are the biggest bullies in government, and they have no oversight.
Jeannette, thanks for getting yourself out there in front and fighting for us.
This isnt the first time. This same type of thing was done to AIDS patients 30 years ago, etc.. They have not changed their behavior! Unprofessional isnt the word for these people, we can move on to words such as Disgrace, Disgusting, Corrupt, etc etc.. etc.. etc..
NIH, CDC, HHS all have had a bad habit of calling patients certain things.
AIDS patients- “Queer” “Fags” that needed to get their heads out of their crotch- but failed to mention all of the children who got AIDS from transfusion and the hemophilliacs that got it from contaminated Factor 8 because they were pushing the “Gay disease” propaganda.
Lyme patients- “Lyme Loonies” that CDC officers who own the patents of fraud data called Lyme patients- even went as far to send a “disinformation” campaign by articles with “bogus data” which they said themselves all noted on FOIA requests.
“CFS”- we all know what they have said about that- “sick and tired”,. “yawn” and “Pepe The King PRAWN” and Stephen Straus’s condenscending joke- Post Exertional Malaise-Malaise is the wrong word and is just as bad as fatigue.
I can go on here with a list of others, but this should make it apparent what these people who are supposed to be researchers and scientists with PHD’s and MD’s (who promised to “Do No Harm”) on the ends of their name say and do and have been doing for 30 years!
I’m outraged and disgusted.
How dare they make a freak show out of this! The total lack of disrespect for people who’s lives have been ruined has me fuming.
How dare they make fun of us(me)! We are so sick, so disabled and so cut of from social life, every day brings a new battle and suffering and they make a joke out of it? Totally inappropriate and disrespectful.
I knew the bureau/department thrives on corruption and lies but we can now add ‘making patients the laughing stock of the department’ add to it.
I normally do not wish this illness on anyone but these revealings sure are tempting. It’s obviously clear from the papers you published that they have no intention whatsoever to do everything in their power to get answers about this mind boggling disease. They should be interested, compassionate and engaging instead they are bored out of their skull and more concerned with their expense reports and wasting tax payers money than to get answers on this disease.
I hope NIH and HHS will read this and know that one day you wished you treated us kinder and with respect for we will not stop until this scam, corruption and abuse of power is made public and those responsible will face the consequences. Karma _is _ and will be a bitch!
—
Tink
Jeanette you are a true hero – to take this on when you are so sick. I do not have enough words to thank you.
In addition to all of the parts of me that now malfunction due to ME/CFS I also seem to have a humor failure – to me it is truly heart-breaking to see such waste of money when there is so much credible research and so many credible experts that they could use. I am beyond outraged at the emails and the jokes, the complete waste of resources.
I think we need a class action lawsuit against NIH if nothing changes (is that even possible?) – the people in charge there are truly criminal in their actions, and their words.
Thank you, Jeanette, for your hard work and tenacity. What you have uncovered is deeply disturbing, but the fact you have done so is very encouraging.
Thank you for posting this article, Jeannette. The hubris of these federal employees is incredible! I suppose they forget that they employed as public servants, and their salaries are being paid by our tax dollars. It is also difficult to comprehend the extent of their callous disregard for the welfare of a group of extremely sick people with M.E. whose lives are being destroyed–and the lives of more children, men and women are being destroyed every day by this horrendous disease. What they are doing is really a sin against humanity. Obviously, they have no human compassion or even common decency; if they did, they would stop exploiting the misery of M.E. patients and give us real biomedical research and effective treatments.
It hurts me deeply to read all these comments and see the suffering and hurt that all this has brought to everyone. I decided to take some action. Only time will tell if anything will come of it.
I contacted CNN’s Special Investigative Unit. There is a contact form they require to be completed for email. Haven’t heard anything back – it’s been too soon. But, who knows? Drew Griffin, the Special Investigator for CNN’s Special Investigative Unit, was courageous enough to tackle the BIG problems with the VA (Veterans Administration).
Perhaps if more people would send emails to CNN.com, some attention would be paid. Here’s the link for the email form: http://www.cnn.com/feedback/show/?s=cnnsiu&hdln=2
You should have no problem with the link. I tested it to make sure.
Sometime a while back there was talk of contacting Drew Griffin of CNN and noting his investigation into VA. Thank you for bringing this idea forward at this time and providing a link to act on!!!
Also re social media–here is Drew Griffin’s Twitter handle.
@DrewGriffinCNN
We disseminate info via Twitter re this HHS-NIH-CDC-IOM-P2P
SHAM/scam–harming ME/CFS patients–
in our weekly (daily too!!) TWEETSTORM Protests.
Drew Griffin CNN is a good name to add to our list!
#StopP2P4ME
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dear dr coyne, it *does* hurt patients deeply when somebody we thought might really care/may want to help, shows “true colors”. please don’t let the door hit you in the backside on the way out. we don’t need you.
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