Here are more P2P emails that were produced to me after I won my IOM FOIA lawsuit. Today’s documents are NIH and AHRQ emails relating to inquiries from the public regarding the ME/CFS P2P program and the “TPs,” the talking points NIH developed as a canned response to any—and I mean any—inquiry regarding the program, regardless of whether the talking points were actually responsive. Please keep in mind that NIH’s P2P document production in response to my FOIA request is in violation of FOIA in numerous respects (e.g., regarding exemptions claimed) and that, based on the agency’s past behavior, there are likely documents regarding the talking points and public inquiries that have not been produced or that have been “misplaced.”
This batch of emails starts with somebody within the agency—clearly entirely unfamiliar with the agency’s P2P (then EbMW) program—consulting the patient forum, “ME/CFS Forums,” to educate him or herself (page 2):
This inquiry came in about an EB ME/CFS workshop. Are you familiar with this? A quick Google search resulted in the following site that discusses the workshop in detail [link to ME/CFS Forums] and mentions ODP providing funding. I didn’t have much luck finding information on NIH’s site about the workshop. [emphasis added]
I guess the secrecy about the program extended deep into the agency itself, as confirmed by Paris Watson who is in charge of the ME/CFS P2P program (page 1):
We have a policy to keep things under wraps until the Steering Committee has finalized the agenda and speakers have accepted our invitations to participate.
(The “Steering Committee” was later renamed the “Working Group.” It is anybody’s guess how many resources went into that. No documents relating to that name change have been produced. I guess they got lost in file 13.)
Watson goes on to say in her email to Susan Maier (page 1):
Given the public interest in ME/CFS, I thought it would be wise to field these inquiries through you, ORWH, or the Trans-NIH ME/CFS Research Working Group. [emphasis added]
(The Trans-NIH ME/CFS Research Working Group is not to be confused with the ME/CFS P2P Working Group.)
Notice the choice of words here. It’s not “answer” or “respond to.” It’s “field.”
And why, if NIH is so concerned about the “public interest” in ME/CFS, does the agency never do anything to actually advance quality research in the area? Why is it always about window dressing and public perception only instead of real progress?
Susan Maier further confirms the institutionalized secrecy (page 1):
Yes, please send those queries to me. I usually coordinate the MECFS messages from NIH out to the public.”
Pre-approving or channeling all inquiries through one person is indeed the best way to avoid somebody going off script and accidentally giving away the real agenda of NIH with respect to ME/CFS.
Also please note Watson’s instructions to the communications team linked to in my prior blog post, “P2P FOIA Documents, Part 4–NIH: Neither Patients Nor Science Meant to Be Part of P2P:”
If *any* inquiries come in regarding ME/CFS, please forward to me and do not reply.
Beth Collins Sharp from AHRQ, in a clear attempt to placate a stakeholder, had the audacity to suggest that the P2P approach will actually give experts and stakeholders any meaningful input (page 6):
I just don’t want to suggest how the EPC will approach it before they’ve had a chance to dive in and hear from the experts. But based on my past experience, I feel confident that they will listen closely to stakeholders, then consider the evidence objectively and analyze it carefully.
This is blatantly misleading. Clearly Collins Sharp, when she wrote these disingenuous words, was likely well aware that the report that would be prepared for AHRQ, her agency, would come from non-experts (and without any apparent input from experts) and that the P2P rules prohibit any experts to be on the panel, not to mention the fact that there has not been and won’t be any input by patients. The only patient on the working group (which finalized the key questions, nominated the workshop speakers, etc.) will not be on the panel and, in any event, has no buy-in or support from the community at all. In fact, he was brought into the process in absolute secrecy without any knowledge by the patient community. Why?
Collins Sharp proceeds with her PR campaign (page 6):
The public comment at the workshop is at the end of the process, but let me quickly add that the expert panel is convened by the NIH at the very beginning for topic refinement and that it includes the patient perspective.
Too bad that Paris Watson contradicts this statement 100% by making it very clear that patient input is really not at all meant to be a relevant part of the process:
… I don’t think members of the public or advocacy groups are appropriate. However, it is appropriate to have a ‘patient perspective’ open the workshop. That would be a nice nod to the advocates (and may quiet the inevitable ‘where were the advocates?’ ‘why weren’t patients included as speakers”). (page 191 at the above link)
We encourage advocates to come to our meetings and participate during the town hall discussions, but please know that we really don’t allow for long commentary.(page 189 at the above link)
Collins Sharp proceeds (page 6):
I hope that there is also buy-in once folks see that it’s a genuine effort to move the science along. I know there is skepticism at this point.
A process so ludicrous as to preclude all meaningful expert input tends to result in skepticism. Instead of addressing the deeply flawed P2P rules, the public is fed platitudes about alleged genuine efforts.
In a later email in reply to a message from Maier that was basically entirely redacted, Collins Sharp all but outright admits that she was purposefully non-specific in her correspondence with the public (page 4):
… and the areas where I was vague were in line with your approach.
In line with Maier’s approach!
Collins Sharp, in another email with a member of the public, claims that the working group that finalized the P2P key questions will consist of mostly experts (page 13):
However, it is important to note that the EPC work will be guided by the key questions refined by the expert committee.
That is another questionable statement at best given that the working group consists of 7 non-Feds (one being a patient and one being a non-ME/CFS expert) and 12 Feds. In other words, experts represented in the working group made up less than a third of the group.
More misinformation by Collins Sharp in an email to the member of the public here (page 9):
… I am familiar enough with both processes that I am confident that the experts will have an opportunity to present the definitional issues and that they will be listened to carefully. That being said, there can be sharing of research resources between projects.
Why are we then told, by the IOM panel chair and others, that sharing of information between the IOM and P2P projects is against the rules?
The secrecy scheme broke down when Maier told a member of the public in December of 2013 about the working group meeting scheduled for January 6th and 7th, 2014 (page 12). Inquiries from the public about that meeting started coming in on January 6, 2014 (page 15):
And I thought this meeting was under wraps!
Once more and more questions from patients and other stakeholders were asked, NIH seemed to realize that it needed to keep tight control over the “message.” In one instance, Maier facetiously stated internally after another inquiry from the public (page 24):
NIH had to put an end to these questions. Therefore, the decision was make to come up with talking points (page 22). That was immediately followed by NIH’s favorite theme, food (page 22):
We should have lunch soon.–Paris Watson
Once the concept of the talking points was agreed on, James Anderson, NIH Deputy Director, (i.e., from the office of Francis Collins, Director of NIH), micromanaged the process to the point of making edits to them. That is the degree of detail to which Collins and his office have been involved in the P2P. Not only did the talking points have to be approved by Anderson (pages 27, 33, 34, 39), but they were actually revised by him. Of course, the actual changes made by Anderson were redacted. They seem to relate to distorting the message about the overlap between the IOM and P2P programs.
What is of minor interest is that Mariela Shirley seems to lack self confidence in her new role and has Maier ghost write the message to Anderson (page 356. She then asks Maier if she may use “we” instead instead of having the message come from her alone (page 35):
Can I use the proverbial “we” vs. just me??
When Maier told her to use “I,” Shirley replies (page 35):
Ok … as long as JA [James Anderson] doesn’t just come after me! (page 34)
Maier reminds Shirley’s that there is no way to keep Anderson (i.e., Collins) out of this (page 34):
We have to involve his staff.
Shirley finally sends her message to Anderson seeking clearance for the talking points (page 39). She also makes the following remarks:
Please note that even prior to when the P2P working group planning meeting ended at noon on Tuesday, the Blogosphere and Twitterverse showed significantly heightened activity and discussion about the ME/CFS Pathways to Prevention Program. Despite informing participants at the most recent CFSAC public meeting about the purpose of the P2P meeting, the P2P processes, and meeting dates/location, the advocacy community is expressing considerable criticism and concern that the P2P meeting and processes are colluded and private.
Right, and the way to address and alleviate those concerns is to disseminate canned talking points. Only in the HHS universe does this make sense.
Shirley’s “wow” in response to Anderson’s requested edits is telling (page 38). Maier doesn’t seem thrilled:
We can think about the merit of the change. (page 38)
David Murray, Director of the Office of Disease Prevention then provides more sales-pitch language to Watson to be used by NIH to explain away the duplication of efforts by the IOM and P2P by first saying that P2P is aimed at research and then stating the following (page 50) :
The IOM effort will  review the various definitions for ME/CFS. However, their goal is to develop and recommend diagnostic criteria and case definitions for clinical care. Their audience will be health providers, patients, and caregivers, not researchers.
Our planning had been underway for sometime when we learned of the IOM’s interest in this topic. We have been communicating with them to avoid duplication of effort.
I believe it was at the last CFSAC meeting when Nancy Lee betrayed that talking point and told the public that the IOM is also going to address a new research definition. Funny that, huh! Because that is the exact opposite of what Murray said above and what we have been told in terms of there not being any overlap between the IOM and P2P efforts and, most importantly, of the language that made it into the final talking points (page 99).
Another telling quote by Maier (page 60):
I would rather start small and add to the content that [sic] have to battle the release of longer more complex content.
This is the same advice defense attorneys give their clients before they take the stand: The less you say, the better. Because you are less likely to get caught up in inconsistencies.
More secrecy from Maier here (page 64)
I think we are in agreement that we are not releasing the panel names until the first day of the workshop (Dec 2014 )…
Why is the identity of the panel members such a secret? What is NIH afraid of the public will find out about those panel members or tell them? Moreover, NIH is not even making an effort to pretend that it has conducted conflict-of-interest checks of the panel members.
And then the infamous fasten-your-seat-belts quote by Maier (page 64):
Fasten your seatbelts [sic] and return your tray tables to the upright position because its’ going to be a bumpy ride 🙂
That smiley face is from the actual email.
Once the talking points were finalized, instructions by Maier to Shirley for their use (page 81):
Response needed. Can you send the TPs? Keep a record of these transactions and do not include any other name but yours (not even as BCC). If you want to send to someone as a heads up, forward your response to the email to that person(s).
No copies, not even blind copies! That’s how you create deniability. For Congressional, FOIA and other purposes.
Then the official roll-out of the talking points within the agency (page 95):
Please confine your responses to the content in these talking points.
The formatting (bold and underlined font) is from the original email. I guess the do-not-go-off-script message really was important.
The talking points were then sent as a reply to any inquiry whether or not they were responsive. Patients complained about that and asked for clarification:
None of the information you sent me answered my questions. (page 117)
I must respectfully point out that you didn’t answer any of my specific questions. (page 121)
… my questions concern how the NIH P2P panel that will be writing the final document will be selected. … I hope you can expand on my questions … (page 124)
Maier was like, “yeah, right!” (That is not an actual quote.) In an email to Shirley, she dismissed those patient inquiries coldly (page 124):
File all these responses. No need to answer them directly.
And that’s how you effectively keep total control over a genie that you know you can’t put back into the bottle if somebody accidentally frees it.
And just how many government-paid hours were spent colluding to never directly answer a question?
What a waste.
I would be embarrassed to be any of these people.
If they were embarrassed, it would be temporary, and would disappear as soon as they received their paycheck that we pay for.
I was thinking the same thing–Prevent SCIENCE from being a major part of this ridiculous ‘exercise’ of IOM and P2P–KNOW nothing — DO nothing — spin the wheels — create more HARM to patients–and get paid for it. Of course, this is all under direct order from TPTB!
Truly UNbelievable — what a testament as to how the government operates–and specifically within the ‘health’ agencies–I did say UNbelievable–yet, it is the abominable reality — and with our most UNfortunate vast experience with this — it is ‘par for the course.’
Thanks for providing us with more info to talk up out in social media, Jeannette — ohhh, excuse me–‘Blogosphere and Twitterverse’ — they get paid to monitor what is said! Bloody hell !!!
Completely missing the mark on this one–IOM and P2P–yet that’s what this ‘SET UP’ is all about . . . !!!
Thank you, Jeannette for releasing more of this “tp (mis)information”.
I think most of us realized from the start that the IOM and P2P were linked and that the insistence by Susan that they are separate entities and one cannot inform the other was a lie.
The lack of transparency, the total control of the information given to he public, the refusal of answering real questions by patients all point to a very devious process. In addition, the refusal of participation of stakeholders, advocates and patients should further legitimize this secretive, murky project.
How “little” of them to be spying in on our blogs and twitter! If they really want to know how we feel, invite us to the table and act as a positive, morally sound health department that is there to serve the public.
We need to ask, why is there such a need for control the talking points? Why the insistence that stakeholders be left out of the process? Does anyone think that the aim of this process is a positive one?
I am angry and ashamed of the conduct of these members of my health agencies. We are actually financing this devious project with our hard earned tax monies. It is pathetic. But, worse than that, the result could become dangerous for our patient population.
What happens then? Collins and co. will party and toast their success. (yes – not only food but drinks too!) Us patients? We will be left to languish for another 30 years!
It’s amazing how much time was spent developing the talking points (“TP”) and insisting that no one waiver from them. It makes me think of another kind of TP — toilet paper used to clean up a mess.
Thankyou again Jeannette, these people have no business working in a medical related profession as they have no regard or compassion for the patients whatsoever!
These people are only concerned about putting their “script” aka “talking points” together and damage control via monitoring the “twitterverse” “blogsphere”, they are a disgrace!!!
More money is being spent on that nonsense instead of research to help a very ill group of patients who are the Non HIV AIDS patients, which they know, NIH knows this illness is the Fungal-Viral synergy which they agree with, it can be found online, and the idea that they are pushing this BS is beyond me.
I would NOT recommend people to come here from other countries as they have the false notion that this country is the best country for medical care- it is not! This country and those agencies are a mainstream cult and of no use to patients with these illnesses, I was an active RN for almost 10 years and im saying this from that point of view!
Reblogged this on The Other Side Of The Stretcher and commented:
P2P FOIA Documents, Part 6—”File all these responses. No need to answer them directly.”
Another thanks to Jeannette Burmeister for obtaining these documents through her lawsuit that shows proof on paper the disgrace of the medical system in regards to patients with these illnesses that are considered as “controversial” and “non mainstream”.
The contempt of patients by our health agencies and the deviousness to keep research progressing for M.E. is becoming more and more obvious to patients, their families and to the general public. It is a human rights issue to obfuscate the issues around a disease and refuse to fund proper research that prevents the 1-4 million patients to have a chance at treatment in their lifetime. Every time I think about this I am outraged! How can the NIH or CDC staff sleep at night knowing that they are condemming hundreds of thousands (or more assuming 25% of 4 million) of severely ill patients to their beds isolated, without care, dismissed as it being “all in their head”? Do they not know that these severely ill patients exist because they are so out of touch, ignorant or uneducated? Clearly there is no attempt in the process to gather the stakeholders, experts and advocates to learn the truth about this horrid disease, only to deceive, hide and ridicule, and it is sickening. Words cannot adequately express our appreciation to you Jeannette for bringing some of this out into the open, even when it meant a considerable sacrifice to your health.
Transparency — HA — that HHS–CDC–NIH & IOM — P2P are transparent is true–their LIES, deceit and disdain for the ME/CFS community is more than abundantly transparently clear.
The actions of these ‘professionals’ working AGAINST patients with our health care goes in the face of the Hippocratic Oath — Do NO Harm. ‘Do NO Harm’ isn’t even a distant consideration with this bunch.
This whole bunch and whomever is leading at the top are an absolute DISgrace to humankind as they perpetrate and perpetuate these Crimes Against Humanity.
“File those responses…no need to answer.” Yes, thanks to Jeannette’s lawsuit, the picture is becoming ever more clear. And the picture is not pretty. This patient community knows exactly what is going on — no more conjectures. As good old Wm. Shakespeare said — “The truth will out.”
And–THAT–“File those responses…no need to answer.” is exactly what advocates were warning about–there has never been intent by NIH-P2P to answer–‘they’ are merely ‘using’ the comments as a ‘count’ to say that they have engaged the ME/CFS community.
They don’t give a flying hoo-haw — and worse this bunch is actively engaged in harming the ME/CFS patient community — now that is CRIMINAL!
Thank you for writing this, Jeannette. With each of your posts, it becomes more and more clear that the US government considers Myalgic Encephalomyelitis (M.E.) a very important subject because they are going to such great lengths to try to hide it. Thanks to your courageous and costly lawsuit, we are seeing exactly how important we are to the US government. No, they don’t want to help us, but they obviously think this disease is very important because they are spending so much effort and so much time trying to hide it.
They clearly consider M.E. patients worthless, so what are they hiding? Could it be that this is an epidemic ten times the size of the AIDS epidemic and they are trying to hide it so that they can avoid the truth? Yes, I think it is. But they are very short-sighted here.
This disease is stealing the lives of millions of people right here in the USA and the patients and their families and their friends see and know what is happening. No denial on the part of the CDC, NIH or other parts of HHS can change this.
These millions of patients know it because they see it with their own eyes. And thanks to this government denial, this epidemic is now growing even faster and stealing even more lives. What will it take for these “public servants” to admit the truth? Don’t worry. Their own families and their own friends are in line with the rest of the citizens. When they are in wheelchairs or bedbound, will they still support the government denial?
Even by skimming through the emails what is apparent is that the panel is referred to a Expert but inclusion prohibits any expertise! Panel members are not fully aware of what is expected if them or the purpose of the process. There is talk of transparency and openness but information is shrouded in secrecy. This is a farce of epic proportions!
Reblogged this on Carole….
If the blogosphere and twitterverse are being monitored, then it’s clear that there should be a reasonable understanding of the criticisms against both IOM and P2P.
Yet rather than try to address our concerns, it seems that effort is being made to ignore (and by doing so thus inflame) the patient population’s worries!
In American English…
Myalgic encephalomyelitis: A neuro-immune disease.
Chronic fatigue syndrome: A decades-long, bureaucratic exercise in the dehumanization of individuals with myalgic encephalomyelitis. See also “marginalization” and “structural violence”.
Ren–that really cuts it to the chase–indeed!!!
And what lurks behind this ONgoing ‘bureaucratic exercise’ are Top Secret horrific dastardly ‘scientific’ deeds — result — destruction of life — our lives — and millions more–at home and globally. The government agencies are going to great lengths, putting in all their efforts to ‘cover-up’ these atrocious acts–and ‘put a lid on it’.
And ‘they’ move in with stealth force every time ‘honest science’ gets closer to the REAL ‘bio’ answers of M.E. This is treachery–this is lunacy–this is DEStruction and total DISregard to human life everywhere!
This is so verrry verrrry verrrrry wrong.
Ren, passing on compliments. Many patients feel this really captures it. Thank you!
The herd mentality demonstrated in these NIH emails is deeply disturbing.
In their quest to create nonspecific “talking points” to avoid answering direct questions from patients, they ponder, they coordinate, they seek approval, they revise, they refine…..and through it all, nobody asks the pivotal question, “Why are we f***ing over these patients?”
Indeed, they are very busy little bees, working hard, working, working, working at….well….nothing of great importance to the taxpayers they are working for.
It makes me uncomfortable watching these people delude themselves.
Pingback: P2P FOIA Documents, Part 7—Collins, Murray and Maier: Trouble in NIH Paradise | Thoughts About M.E.
There may be some that disagree with my comment but I believe for right now the best way for everyone reading this is to immediately contact your Congressional and Senate Representatives to express your outrage! This ship is about ready to dock.
Since this is happening under a Democratic administration, Democrats can ill afford bad publicity since an election is just around the corner. Apparently for some reason, the head of the NIH, Phil Collins and those directly beneath him, did not receive President’s clear and concise executive order in a memo directing all executive heads and agencies to a more open and tranparent government or perhaps they feel they are immune to such excutive orders.
Or perhaps the agency and department heads within his administration are in rebellion to Obama’s administration directives?
Then we have Obama’s promise to the ME/CFS community to elevate Chronic Fatigue Syndrome in priority within the NIH and the HSS, assigning his Deputy Chief of Staff to follow their efforts. Well that has certainly backfired! http://phoenixrising.me/archives/13145
I also believe that this could be the best avenue to seek an investigation on abuse and violation of Federal Law by an administrative head!
U.S.House Committee on Oversight & Government Reform (Chairman Rep. Jason Chaffetz, R-Utah) Everyone should Contact Oversight Committee’s secure whistleblower platform here to confidentially report waste, fraud, abuse or mismanagement. https://wb-gop-oversight.house.gov/
Depending on the outcome of P2P, AHRQ Evidence Review and IOM reports, I believe a civil RICO against Francis Collins NIH should be considered. We need to go nuclear if the NIH and the CDC is going to go nuclear against this community. P2P & AHRQ report will be disemminated to all healthcare providers, to all those within the medical profession and will be added to the curriculum within medical schools.
Pingback: US disabled hold protests at Bethesda | Shout Out About ME | Latest news, opinion and extensive resources on ME/CFS
Pingback: IOM’s Redefinition of ME: Farewell LTD Benefits, Hello Diluted Research Cohorts | Thoughts About M.E.
Pingback: The Secret Files Unwrapped: Part 2 – Control, not Collaboration | valerieeliotsmith