P2P FOIA Documents, Part 4–NIH: Neither Patients Nor Science Meant to Be Part of P2P

The documents I am releasing today at this link relate to the P2P working group. I published some of them previously in my P2P FOIA Documents, Part 2: “We also recently had a FOIA request on CFS.” But to I thought t would be helpful to group documents together topically.

My health has deteriorated dramatically. Litigation with recalcitrant, obdurate and entirely unreasonable defendants will do that when one has a disease that is significantly worsened by cognitive or physical exertion, a fact the defendants, HHS and NIH, are aware of. In the future, I might have to rely more heavily on the help of others, but rest assured, I will not be bullied into giving up. Although I am not able to comment as extensively as I would like, here are a few thoughts on today’s documents:

  • The working group planning meeting, which took place on January 6-7, 2014 and was chaired by Susan Maier, cost tens of thousands of dollars. Around $15,000 was approved for this meeting. The partial actual cost of the meeting was specified at over $20,000 with a number of expenses not yet submitted (page 1). That is at least 30% over the approved cost.
  • The members of the working group are listed below. Of particular note is the fact that the first four individuals listed (most of the non-Feds) will also be speakers at the December P2P workshop. This is noteworthy because the workshop speakers were designated by the working group, so four of them basically appointed themselves as speakers; a convenient lack of checks and balances and a self-perpetuating revolving door:

Non-Feds:

Nancy Klimas

Leonard Jason

Suzanne Vernon

Robert Miller*

Peter Rowe

Mady Hornig

Carmen Green (chair of the workshop)

Feds:

Susan Maier

Jody Engel

Deborah Langer

Elizabeth Nelson

Wilma Cross Peterman

Katherine Jung

Janet Maynard

Eun-Chung Park

Leorey Saligan

Mariela Shirley

Paris Watson

Jessica Wu

*Please note that the patient representative was chosen after a “cancelation in the ‘advocacy’ category (page 160). We do not know who NIH’s first choice for patient advocate was.

  • It is quite clear by now that HHS and it’s component agencies, such as NIH, are keeping close tabs on the community’s online activities and discussions. One has to wonder how many resources go into this monitoring. This only makes sense if they are worried. Why would they be worried? It’s as if they are trying to gauge when the lid is finally going to blow off. Instead of working with the community and, in earnest, trying to effect real progress in the field, they seem in constant damage-control mode and only worried about appearances. Because once that investigative reporter picks up this story and runs with it, nobody wants to take the hit for the atrocities of the last 30 years. For example, NIH flagged a discussion on MECFS Forums (page 7). Mariela Shirley expressed feigned and mind-boggling surprise about both predictable and justified criticism by the community of the P2P shortly after the working group meeting (page 242):

Please note that even prior to when the P2P working group planning meeting ended …, the Blogosphere and Twitterverse showed significantly heightened activity and discussion about the ME/CFS Pathways to Prevention Program.  … [T]he advocacy community is expressing considerable criticism and concern that the P2P meeting and processes are colluded and private.”

The following was sent as part of agency-internal emails just prior to, and after, the January IOM meeting:

The meeting is open to the public and we expect that media and members of the advocacy community, including those who actively blog and report on ME/CFS, will attend. We also recently had a FOIA request on CFS.

We have not received any media inquiries yet, but wanted to let you know that coverage and/or advocacy blog posts may be forthcoming on this tops. We’ll be monitoring the webcast and Twitter chat during the meeting. [emphasis added] (page 269)

Buzzfeed ran a substantial piece on ME/CFS today that you might be interested in as well: [David Tuller’s January 2014 piece]. It mentions that NIH “only spends $5 million annually” for ME/CFS. (page 268)

  • Paris Watson, who is in charge of the P2P program at NIH, instructed the “Communications Team” (page 11) not to reply to questions from the public regarding ME/CFS in order to keep tight control over the agency’s official party line:

If *any* inquiries come in regarding ME/CFS, please forward to me and do not reply.

  • According to Suzanne Vernon of the CFIDS Association of America (“CAA”), Nancy Lee, then in charge of ME/CFS at the office of the Assistant Secretary of Health and Human Services and Designated Federal Officer of CFSAC, shared with the CAA “privately” information about the definition efforts (page 20). How many advocates who are not cheerleading and covering for HHS and are, in fact, critical of the government’s actions had the privilege of obtaining secret information from HHS relating to the redefinition programs? More importantly, did the CAA use this information to throw its alleged weight behind fighting these unscientific redefinition efforts, IOM and P2P? No. Instead, the CAA has been playing patty cake with HHS being an all too willing supporter of the government against the clear interest of the community and its stated wishes.
  • Why did NIH assign extreme urgency to the P2P effort? Per Susan Maier (page 25):

As you know, NH leadership would like us to move as quickly as possible on this activity.

  • The documents show a repugnant amount of cynical condescension and disdain towards the patient community. There is no real interest in a meaningful dialogue with the patient community. Rather, the let-them-eat-cake attitude is ever-present. Some examples:

I know you will learn to regret your decision [to be part of the working group].–Susan Maier to (page 41)

I can be a little cautious when it comes to this community.–Susan Maier (page 145)

Lovely. At least no question about IOM.–Mariela Shirley (page 168)

Given the nature of the advocacy groups for ME/CFS, is it reasonable to include more than the normal number of public members?–Susan Maier (page 192)

“… I don’t think members of the public of 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”).–Paris Watson (page 191)

Fasten your seat belts and return your tray table to the upright position because it’s going to be a bumpy ride :)–Susan Maier (The smiley face is part of the quote.) (page 240)

Consider that those are only quotes from the parts that they let us see, not from the heavily redacted parts or parts they never produced in the first place or that were “misplaced.”

  • Susan Maier claimed that she was collecting the names of volunteers who would like to help with the workshop (page 48). It’s funny how this call for volunteers never became known in the patient community. Let’s be clear: There was no call for patient volunteers for the workshop. My saying this is not a case of sour grapes. I would not expect to be tapped nor would I ever consider being part of this charade. Having a patient advocate be part of the process is no more than a fig leaf. Let’s not forget that Paris Watson, the person in charge of the P2P, did not want ANY patients to partake. Participating patients were never meant to be taken seriously. They were just meant to silence any potential criticism.  (page 191):

“… I don’t think members of the public of advocacy groups are appropriate. However, it is appropriate to have a ‘patient perspective’ open the workshop. That would be a nice node to the advocates (and may quiet the inevitable ‘where were the advocates?’ ‘why weren’t patients included as speakers”).

This is also very clear from Watson’s following statement to Susan Maier. People planning on participating in the workshop should keep that in mind.

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)

  • NIH is claiming that the Oregon Health and Science University is a neutral group (page 51). This is about as true as the claim that the IOM is independent from the government. Both organizations rely heavily on these types of government grants for “evidence” reviews. Of course, their reports are going to be biased. Kind of like plaintiffs and defendants parading, in front of the jury, expert witnesses who testify about their opposing opinions. The only difference here is that the patient community doesn’t get to call an expert witness, only the government.
  • As of July 2013, NIH committed about $274,000 (page 61). The actual amount is likely to be substantially higher, just as the approved estimate for just the working group planning meeting, which was drastically exceeded (see above.)
  • The draft workshop key questions included crucial issues, such as how ME and CFS differ, which did not make it into the final key questions. It was one of the working group’s tasks to finalize those key questions. According to NIH’s own rules, the key questions cannot be changed once they are finalized by the working group and published in the Federal Register. Conveniently, it seems like the questions never were published in the Federal Register. At least I could not find them and if one can’t find something in the Federal Register after performing a reasonable search, it arguably cannot be deemed published. If somebody else is able to locate them, I would love to see that publication. But more importantly, it was the working group who allowed for the key questions to be drastically altered to the point of dropping the ball on including homing in on the difference between ME and CFS. Of course this is a question that HHS is deadly afraid of because the agency has spent decades confounding the two.
  • The meaningless talking points that were sent out by NIH as a canned response to inquiries by the public about P2P were blessed by the working group (page 239).
  • The workshop, which is scheduled to be held in December, has been cut short from 3 full days to 1 1/2 days (page 97). A 1 1/2-day workshop whose panel member are not experts (!) for a disease that NIH itself considers highly controversial. Of course, the controversy has been manufactured, starting in the 1980s when the CDC pretended to investigate the Lake Tahoe outbreak. Rather than examining patients, the CDC employees who went to the Tahoe area went skiing and gambling and slapped the name “chronic fatigue syndrome” on a disease that had long been known as myalgic encephalomyelitis around the world and forced their first flawed definition on us.
  • The documents contain many redactions and that seems to be the name of the FOIA game; FOIA really is a rather toothless tool for the most part because only a very small minority of people has the skills, finances, tenacity and health to follow through on a FOIA request and the government is counting on that. In any event, some of the redactions seem more interesting and telling than others, such as the ones starting on page 146 addressing a question from Nancy Lee regarding the difference between the IOM and P2P efforts, which she seems completely unclear about as she was, “following internal and external pressure,” drafting HHS’s FAQ about the IOM contract (which, by the way, HHS never took ownership of despite public inquiries).
  • The Oregon Health and Science University (OHSU) showed its utter lack of understanding of our disease in a PowerPoint presentation (starting on page 173 (December 2013 slides) and again on page 196 (March 2014 slides, which seem to be identical to the December 2013 slides) that names “chronic and disabling fatigue” as the “hallmark” symptom. Every true expert in the field knows this to be false. The signature symptom is instead a post-exertional crash, a worsening of many symptoms after only minimal cognitive or physical exertion that is completely out of proportion to the exertion. So, OSHU is ignorant about our disease and yet in charge of developing a new research definition to be used by NIH. OSHU, in the same PowerPoint presentation, lists CBT and GET as the first treatment choices. Followed shortly thereafter by “vitamins and supplements.” Science was never meant to be part of the deal when P2P was unleashed on ME/CFS.

This is about as much as I can muster in terms of comments. Obviously, there is a lot more in those documents. (I may dive deeper into them in the future.) In the meantime, I have a few more documents to release, some of which are quite interesting. More than ever, the timing of my next post is entirely driven by my health.

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20 Responses to P2P FOIA Documents, Part 4–NIH: Neither Patients Nor Science Meant to Be Part of P2P

  1. Ess says:

    Thanks so much, Jeannette, for all this work and effort you do for us–it is a tremendous help to us in this WAR that HHS has declared on the ME/CFS patient community. HHS & NIH are in charge of Health ‘Care’–really ?!! This is LUDICROUS; they have NO compunction to knowingly and intentionally ravage further HARM to our individual and collective health. K A R M A is coming soon!!

    YUP–NO checks and balances–complete obfuscation; name of the game.

    Please take care and know how much your grand efforts truly are appreciated. I’m gonna click on your link to start reading more in this farcical charade as set up by HHS-CDC-NIH-IOM-P2P.

  2. libbyboone says:

    Oh, how angry I am. Thanks Jeannette.

  3. As an advocate (daughter has M.E.), I can’t be more appalled than I am at this moment. To date, I haven’t read anything which shows why HHS, NIH and CDC have decided to wage war on ME patients. They are the bullies, not unlike the bullies that patrol schools, looking for students who are “different” for one reason or another, so that they can puff up their chests and feel “big and strong” by pummeling the “weak and different.”

    We all can’t thank you enough, Jeannette, for all you do on behalf of all patients, of course, including yourself. Please take care as best you can.

  4. Carrie says:

    Once again, Jeannette, thank you for your courage, tenacity and the health and financial sacrifices you make to do this advocacy work. We are forever in your debt.

    I am particularly struck by the absurdity of their paranoia. Monitoring us online, controlling communications with patients, identifying ways to handle us. Seriously, what are they afraid of? We already know the emperor has no clothes!

  5. VBee says:

    Jeannette what you’re doing for PWME is priceless, we’ll be forever indebted to you.
    As Elizabeth Warren says: “If you don’t have a seat at the table, you’re on the menu.”
    It’s very clear that We don’t have a seat at the table.
    Thank you for trying to stand up for us and getting our voices heard.
    PWME want, need and deserve a seat at the table!

  6. Thank you, Jeannette. Now we know a bit about what NIH is really doing–but my question is this: If they are letting us know they feel as though we are not even worthy of their serious attention, as these emails show, then what are they hiding from us in the redacted information? It must be horrendous for them to hide it when they consider it all right to tell us they are wasting all this money funding a project which is designed solely to hide M.E. for another 30 years and tell our doctors to prescribe antidepressants, CBT and GET!

    And of course, on page 7 there is an email that mentions MECFSForums. A NIH employee could not find info on their own websites, so they googled and came to MECFSForums! We’re glad we could help, NIH; now will you listen to the truth about P2P?

    Patricia Carter, Admin.
    http://www.MECFSForums.com

  7. catherinelyn says:

    Many thanks to you Jeanette for all of your work on these multiple FIOA requests and for compiling the information and posting it for us all to read for ourselves. It’s obvious why it took the powers that be so long to respond to your request; they had a lot of reading and redacting to do before they could comply. So much for President Obama’s transparent goverment! And such a waiste of our tax dollars.

    Please take care, rest and feel better soon!

  8. Ren says:

    Thank you, Jeannette.

    “The aim of Newspeak is to remove all shades of meaning from language, leaving simple concepts… that reinforce the total dominance of the State” (Wiki). ME/CFS is a medical-political term applied to a heterogeneous population? Abracadabra. E Pluribus “Unum”: ME/CFS is fatigue. Nevermind “diagnos” from Greek “discern”, “distinguish”…

    Watson (“who is in charge of the P2P program at NIH”) is associated with the U of Michigan, as (Occupycfs.com reported) is Dr. Carmen Green (chairman of the P2P panel) and Dr. Dan Clauw.

  9. Katharina says:

    Thanks so much, Jeannette, for all your efforts! Thank you for your extraordinary courage! Please take care and have as much rest as possible!

  10. Kelly says:

    While I’m in agreement that the NIH doesn’t seem to be on our side, I find it rather appalling that you posted a link to the documents that contain the email addresses of private citizens, some of them ME/CFS advocates. DId you have their permission to do so?

    Seriously, would you like it if someone else made your private email address public?

    • No Kelly, I wouldn’t. That’s why there are laws that the government is bound by (I am not as a private citizen) and if they violated those by making the documents available to me without appropriately protecting other individuals’ privacy, then maybe those individuals should let it be known that they are not happy. In other word, you are attempting to shoot the messenger. I was merely publishing documents that were provided to me without restrictions. Don’t you think it’s important that ppl know exactly what I was provided and that the government potentially violated the law by not redacting those email addresses?

      I have not tinkered with the documents in any way. I am neither healthy enough nor is it my place to do so. What you see is what I got. Sorry you are appalled. But you are attacking the wrong person.

  11. Ess says:

    The e-mail addresses are what the government ought to have been redacting — not the other information they were so focused on hiding and covering up.

  12. Carrie says:

    Interestingly, they did take the time to redact a working group member’s email address (page 30), the address of a person asking to be part of the evidence review (page 57), and the address of a recipient of a working group meeting invitation (page 112).

    It seems odd they did not similarly protect the privacy of those ME/CFS advocates and a few others, especially when it was made clear to them this information would be published.

    I hope those who are unhappy with this privacy violation will bring this issue to the NIH.

  13. Kathy D. says:

    Thank you, Jeannette, for all of your efforts. Please take care of your health in the midst of all of this. You’re like a detective uncovering a massive government cover-up. This is starting to feel like Watergate!
    I think there is a concrete reason why NIH and HHS are proceeding in this manner, and, actually, engaging in a cover-up, worthy of Woodward and Bernstein, who found out the real story in the Watergate scandal.
    The government does not want to recognize another disease, which will require millions more dollars for research and treatment, medical coverage, disability benefits and more. Until the scientific evidence is known everywhere and out in the press and the public domain, and known among scientists and it’s indisputable, public officials will not budge.
    It’s also conservatism in the medical profession. How long did it take to have agreement on the germ theory of disease, where it took tremendous work and pressure to convince doctors to wash their hands, sterilize instruments, etc.? How long did it take to get rid of the backward methods of treatment people with “leeches and purges?”
    The whole medical establishment needs to be shaken up, and it will take a lot of scientific studies — which are published, and involve several subjects — to convince doctors and scientists — and even more to convince government officials.
    Well, getting these legal documents and winning the court case for FOIA documents is a big start!
    So, we thank you.

  14. Cheryl says:

    Thank you again for your hard work on behalf of all of us.

  15. Shane Carlson says:

    As you are well aware, this type of financial penalty and the negative attention it attracts are likely the only thing the HHS and NIH are likely to care about.

    Excellent job.

    Thank You!!!

  16. Pingback: P2P FOIA Documents, Part 6—”File all these responses. No need to answer them directly.” | Thoughts About M.E.

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