David Murray’s (Director of NIH’s Office of Disease Prevention) noticing of a ProHealth blog entry started an avalanche of bizarre email exchanges within NIH that included, among others, Francis Collins, James Anderson and Larry Tabak. I received these emails after winning my IOM lawsuit.
Murray was worried about the ProHealth piece calling NIH out for the ridiculously small amount of NIH funding our disease receives. He rings the alarm bells over the bad PR (page 1):
… reporting that chronic fatigue syndrome funding has declined while “NIH funding levels explode.” Right now the organization is spending approximately as much on CFS as it was in 1992. Is asserts for this reason that “The NIH’s ‘commitment’ to ‘enhancing the health” of people with Chronic Fatigue Syndrome has declined over time,” devoting under .02% of its budget to the disease, or $6.00 per patient.
It made me wonder if we should put something on our website about the upcoming P2P workshop on this topic.
Once again, zero concern for the facts, i.e., that our disease receives a pittance from NIH, or any attempt to improve NIH’s track record on that front. No, Murray went straight into how-can-we-make-it-look-better-than-it-is mode. Let’s put out some info about some ludicrous workshop, the P2P, on our site. That’ll appease the masses and might field some uncomfortable inquiries from Collins concerned for the image of his agency.
Murray then sends a draft message intended for Collins to Paris Watson, Jody Engel and Wilma Cross Peterman for their input. Engel has a comment that we are not allowed to see (page 7). Cross suggests to add a link to the P2P link (page 9). Because, you know, they put all that work into the new shiny P2P site.
Then, just before sending his message to Collins, Murray to Paris Watson (page 11):
I need to clarify the purpose of the workshop. It is supposed to be used by [three lines of redactions].
So, the Director of ODP is in the dark about the purpose of the P2P. Very comforting, although maybe not surprising. After all, we are talking about a disease that is highly controversial (and thus, not a disease topic the P2P program is supposed to be used for, according to NIH’s own rules) and that already has another redundant HHS redefinition effort under way, the IOM “study” (redundant because the experts already agreed on a definition, the Canadian Consensus Criteria). Of course, we are not allowed to see the response email(s) even though no exemptions have been claimed. But then again, not producing responsive documents in reply to a FOIA request is standard HHS operating procedure. I digress …
Murray sends his message to Collins copying Anderson. One of the things he says (page 15):
Let me alert you that ODP has been planning a workshop on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as part of its Pathways to Prevention workshop series for more than a year.
In a later email to Collins, Murray added (page 16):
Our planning had been underway for sometime when we learned of IOM’s interest in this topic.
Now isn’t that interesting?! Don’t these folks talk to each other? Because that is pretty much the same point in time that Nancy Lee started working on the IOM “study.” Way to waste money on the duplication of efforts for a disease that hardly gets any money to start with.
What I find even more interesting is the “IOM’s interest in this topic.” So much for the IOM being independent of HHS. We all knew that this was a meaningless talking point, but stay tuned for more interesting revelations on that front.
Anderson promptly asks (page 14):
Remind me- the goal of the ODP WS is to provide a research definition for ME/CFS. We are not wandering outside that box. The IOM meeting, [redaction].
So, now Anderson, Deputy Director at Collins’ office, is also unclear about the difference between the IOM and P2P projects.
Murray replies to him (page 14):
[The IOM has] invited Susan Maier from ORWH to participate in their first meeting later this month to discuss the P2P workshop so as to avoid duplication of effort.
Well, since we know from Nancy Lee that the IOM is also going to address the research side of things, what Murray was really saying is “so as to avoid the appearance of the duplication of efforts.”
But Murray’s sale pitch to Anderson is mainly this (page 14):
The community has felt that research in this area has been stalled because of the lack of agreement around the diagnostic criteria.
He seriously said that. Never mind that there is consensus among the experts on using the CCC as the research definition. Thus, the patient and advocacy community’s outcry over these redundant undertakings, the IOM and the P2P. And never mind that research in the area is not making much progress because the definitions that have been used in the few NIH-sponsored studies (despite having the much more accurate CCC and ICC available) are so senselessly broad—not requiring PEM or only requiring six months of fatigue—as to include many patients who do not have ME. No wonder progress is painfully slow. Not to mention the lack of a meaningful amount of funding from NIH. I wonder what kind of study our experts using the CCC could have performed using the money that HHS is blowing on the P2P (and IOM).
Not surprisingly, Collins is not buying it and Anderson asks Murray for a follow-up message to Collins (page 14):
I think Francis needs a follow-up email explaining how the NIH and IOM goals are different. … [redaction] Blame it on me.
Francis needs a follow-up email? And he can’t ask for that himself? Really?
So, now we have three high-level NIH officials, Murray, Anderson and Collins, not knowing what is going on with P2P.
But wait! It gets better.
Larry Tabak, Principal Deputy Director at NIH, who was copied on Murray’s email to Collins is asking Collins and Murray (page 26):
As I recall HHS was planning on sponsoring a workshop on this in FY14 that NIH is a co-sponsor of; Janine [Clayton] may know the details …
Interestingly and sort of out the blue, Collins replies to Murray (page 23):
Thanks for the heads up. I hope there will be some attention to the microbiome as part of this CFS workshop.
If Collis wants the microbiome to be studied in “CFS,” why isn’t he funding it? Ian Lipkin recently received a $31 million grant from NIH (for the study of—among other things—the microbiome, just not in CFS). And yet, Lipkin is having his ME/CFS grant proposals rejected because NIH believes that our disease is psychosomatic. Moreover, how is a so-called evidence review supposed to contribute to the knowledge in the “CFS” microbiome field if there is no evidence because very little was funded by NIH and even that only recently with no results yet?
At this point, Murray has just about had enough and he vents to Cross (page 25):
My initial note this am stirred up quite a series of emails. Jim [Anderson] was concerned that Francis might not understand the differences between the IOM effort and ours, so I consulted with Paris and Susan Maier and sent a follow-up note to Francis. Then Francis raised the issue of the microbiome and Larry raised the specter of yet another workshop. I am trying to find out if this “other workshop” is the IOM meeting.
Murray is clearly as exasperated by now as he is confused by the various redefinition efforts (page 25):
I hadn’t intended to spend most of my morning on this …
He asks Maier and Watson (page 28):
Do either of you have any information on this? Is this the IOM workshop that the 3 of us have been trading notes about this am? Or is there a third workshop being developed that I haven’t heard of. Dr. Tabak suggested that Janine might have details, so let me ask Susan about this.
Right, that makes sense. If Clayton has information on the matter, let’s ask Maier.
Maier also doesn’t seem happy (page 34):
I have indigestion already … not food-based
Sounds like a somatoform disorder of some kind to me.
Maier gets comforted by a co-worker quickly (page 34):
I wouldn’t let it get to you, however, we will keep watching as it develops. They have these round robin discussion frequently about an issue and then they drop it after they have exhausted it.
If that isn’t a productive way for the executive branch to handle matters! Have round-about discussions for a while and then just drop the issue without any solution.
And do I dare add one last quote from Maier?
I got some lunch (finally). (page 34)
I say we give them all a little more time to flesh out their routines. I can’t tell if we’re looking at an Abbott and Costello with their “who’s on first?” or a frustrated tie waving Oliver Hardy and a weepy Stan Laurel.Or maybe they just want to go for the full monty python? we’ll never know with all the redactions – the best material might be hidden within. A few well placed drum rolls, please….I’m dying of laughter here. Nyuk nyuk nyuk.
(keep ’em rolling in!)
I am so tired of seeing the government working their butts off to keep this disease hidden. Acknowledging that there are people who are incredibly sick, in measurable physiological ways, would not bankrupt this country. Or if it would, than that is an even better reason to put resources into this – to figure out what is going on and fix it as soon as possible.
If this wasn’t so sad I would laugh at how ludicrous this is! Please take care of yourself!
Jeannette, thanks again so much for digging out these incredible insights into just what goes on inside NIH… and why we are still in such a mess. That bit about the microbiome is a real prize! And thanks for keeping us laughing through our tears and fury. I look forward to hearing more about that “interest” from the IOM!
They could still partially redeem themselves by scrapping the P2P right now, and giving Ian Lipkin and his collaborators say $5 million, no strings attached, to study the microbiome and pathogen issues in ME; just to get things started again on a new and better track.
I was thinking the same thing as I was reading this, Abbott and Costello”s “who’s on first” routine! No one knows who’s on first, or second or third, and the right hand hasn’t a clue what the left hand is doing. It is all absurdly ludicrous, yet peoples’ lives are in their hands. And why all this redacted material? How much worse would THAT information make these laughable exchanges? So let me see if I have this right…..there are two “reviews” about which the higher ups know very little. Just enough to make snickering, demeaning comments about the community of advocates and patients. And on those panels are NOT the real experts on the disease of ME, they have not seen patients nor been in the trenches to understand the disease. Patients are not allowed to be part of the process. And the only decent criteria, CCC, which has been used by the experts and is much more definitive will not be accepted even though 50!!! of these experts signed a letter to NIH recommending use of the CCC, which the NIH ignored. Gee it seems that success is not really their goal, their goal is complete obfuscation. But then we patients already knew that.
It’s amazing that a bunch of heartless amateurs have the power to keep us sick.
“I hadn’t intended to spend most of my morning on this …”
What a coincidence; I hadn’t intended to spend the last 22 years being debilitated by this disease with no hope for treatment or cure…
This is right on!
I agree w/your anger and impatience, but just wanted to note that it’s really incorrect to say this is a disease with ‘no hope for treatment or cure’. Many people have recovered, even those who have been bedridden or sick for many years. Yes, it’s very rare, and it certainly hasn’t happened in my case (i’m worse than ever) but still, many have indeed recovered.
Which is it? There are many who have recovered or it’s very rare?
I guess that was an awkward sentence. I’ll try to clarify…
It’s rare overall, but just in my local group (over the last 12 years) we’ve had seven people recover, including 2 who were sick for over 16 years, one of them bedridden for 2 of those years. They all needed a wide variety of treatments and different protocols based on their individual circumstances to get well, and one did relapse for about a year (in 2012), but he’s been back at work since Feb 2013, and he’s sixty three years old. His wife is one who was sick for 16 years, and she’s been well since 2009.
I definitely want the government to take this seriously and increase their spending, but at the same time, although some of those in my group used some antibiotics and antimicrobials, for the most part the answers to their healing was found by stepping outside the box, looking at environmental and other triggers, instead of waiting for the FDA to come up with a drug or drugs that only suppress symptoms for a short period of time.
Thanks again Jeanette for all your hard work.
Thanks for your kind words, Kelly!
But I am very concerned about stressing recovery stories, which is what the press seems to home in on a lot, too. In my opinion, they hurt us. First of all, with the overly broad government-sponsored definitions, we don’t know whether those “recovered” folks really had M.E. in the first place. Second, it can easily be seen as a form of patient blaming. “Had you only tried x, y or z, you would be well by now.” Third, we already have a huge perception problem (thanks to the CDC’s effective strategy in the 80s of renaming the serious disease that, until then, had been known as M.E.and calling it CFS instead, combined with its ridiculously broad definitions with the goal of making the disease so indistinguishable as to ensure its disappearance as a separate disease entity altogether) and recovery stories will stick in non-patients’ minds much more easily than the horrors and realities of this disease. Why go to recovery stories before the government allows the experts to use an accurate definition and before we have the recognition, tests and treatments we need and deserve? And lastly (and I am sure I am forgetting something), recovery stories–despite being extremely rare–let the government off the hook.
I understand the need for hope. I truly do. But right now, there is very little with the way the government is approaching this and until patients accept that (and I know it’s hard to tolerate the fact that there is no realistic reason for hope, unless we can make HHS change course), we are not as strong as we can be in our fight against the government-sponsored abuse.
If I may, in regard to your last para here, Jeannette–in this thread I found a verse by Stonebird to be so insightful.
Thank you, Ess. Greg put that very well! I couldn’t agree more.
Everybody here has made great points! Thank you all for joining the discussion. And please keep it going, as I believe it is important to process this together.
As much as this mean-spirited and uncaring amateur hour is laughable, I hope ppl will remember the fact that our lives and those of our families are at stake more than they will remember the chuckles they might have gotten out of this. (Although it IS sweet justice given how much fun they make of us, the sick and disabled.)
I guarantee you that these paper pushers are feeling really sorry for themselves right now. “Poor us for having been exposed.” (Never mind that we haven’t even seen the worst of it.Yet.) They have completely lost touch with reality. And are getting paid handsomely for it with taxpayer money.
A friend of mine sent me this quote the other day:
“Attacking people with disabilities is the lowest display of power I can think of.”–Morgan Freeman
You made me laugh, Jeannette! Thank you for your brilliant analysis!
While their messages are humorous, it is important to remember that these so-called “public servants,” paid with our tax dollars, are in fact performing this “Keystone Cops” comedy routine as part of their ongoing efforts to keep us sick. They are using millions of dollars of public funding against us in order to stop progress in research of M.E. While the individual actions are hilariously funny, their effect is anything but humorous. They are causing thousands of people in the USA to be imprisoned by this damned disease in their beds without effective treatment and with no real hope for the future. This is the very sad effect of all this bungling and conspiratorial plotting to define M.E. into a psychological illness which will require no expensive treatments and no real biomedical research.
The harm they are inflicting on real M.E. patients is not funny at all.
I really don’t think ‘they’re trying to keep us sick’. There’s no reason for them to do so. They’re just completely clueless and monumentally misinformed.
Nobody can be THAT clueless.
OK–Then let’s word it this way — The Powers That Be are doing everything in their power, and then some, to STOP biomedical scientific progress and keep us buried in psychobabble, GET and CBT.
I totally agree with that Ess. Totally.
Shame on HHS, and shame on NIH. I bet Dr Maier will not have the courage to show up at the incoming CFSAC. Their bureaucratic, head in the sand, look the other way tactics are not going to help them in the long run, they will be egged.
What is so amazing is that should you Jeannette, an attorney who knows the law and knows when your rights, our rights are being trampled on over and over, have not pursued the FOIA lawsuit, HHS and NIH would have danced their merry way for much longer.
Where do I sign for the class action lawsuit?
Reblogged this on The Other Side Of The Stretcher and commented:
More DISGRACEFUL behavior from the same agency of FRAUDS and CROOKS that were involved in the AIDS epidemic!
Why do these people still have their jobs?
Everyone, please contact your elected representatives and complain about the job performance of these individuals, whose salaries are paid by the taxpayers. Ignorance, incompetence and expressing contempt for disabled people are all grounds for termination.
With unemployment at close to 6%, it shouldn’t be hard to find qualified people to replace them, people who know the purpose of their own meetings, who know what year it is, who know the difference between ME and CFS.
Paris “WOOT WOOT” Watson
Who am I missing? Add their names here!
Once we have effected staff change at NIH/HHS, then it’s time to change the make-up up the Special Emphasis Panel (SEP) that awards grants for “CFS” research.
It’s unacceptable that Drs. Ian Lipkin and Ron Davis, both world-renowned scientists, have been denied NIH funding for their research!
Let’s change this, NOW!
This is an excellent idea, Rebecca. Thank you.
I agree! Let’s do this!!
Thanks for your efforts to uncover this litany of government agency incompetence Jeannette.
Unfortunately, the arrogance and hubris displayed by these untouchable agency officials, is all too commonplace in the ivory towers that they inhabit.
The scary thing about all this, is that these idiots truly believe that they are doing good and are good at what they do !
So, how many NIH employees does it take to write two emails? Looks like about SIX.
Y’all did Francis proud! That was some fine ass-saving work.
I feel really good now about how my tax dollars are being spent.
By the way, your program is called P2P, not PSP (see subject lines on pages 7 – 9). I hope that helps. 😉
Ha! I guess Murray really didn’t know anything about it, not even the title. Because “2” and “S” are not close on the keyboard.
Furthermore, the CAA/SCMI continually refers to it as “Pathway to Prevention” (instead of “Pathways”).
Maybe there are several P2PSPs out there; hence, the confusion. Or, maybe nobody involved in the P2P farce has the slightest clue what is going on.
Thanks for sharing more of this horror story with us, Jeannette!!
Now this is a concern to me–what is this all about??
Francis Collins (p.26) — “I hope there will be some attention to the microbiome as part of this CFS workshop.”
WHAT is this code for ?? Is this foreshadowing and part of the ‘set up’ to ‘come to the rescue,” i.e. IOM–P2P sham–then dive into the microbiome–with the goal of burying ME/CFS in our guts for several more decades.
Everything they do — is part of ‘their strategic plan’ to put a lid on ME/CFS. AND their plan is NOT to help us — yet, make it look like they are . . . And then came Jeannette Burmeister winning the FOIA lawsuit against the feds!!
From Susan Maier: “I have indigestion already … not food-based” and “I got some lunch (finally).”
Isn’t Susan Maier the same person who was complaining at a recent meeting that her lunch wasn’t being provided?
I think it would be a real novelty if Susan Maier focused on taking this disease as seriously as she does on eating food.
She’s the one.
I remember being at that meeting and hearing her complain about that food “situation” and thinking about how many patients live on food stamps.
Jeannette said: “It’s amazing that a bunch of heartless amateurs have the power to keep us sick.”
I’m utterly horrified at this purposeful abandonment of 1 million disabled Americans.
We need to set up a strategy group to decide next steps. The trouble is, I’m so sick right now that I can’t do much of anything. And this is just what these evil people are banking on, that we will be too sick to protest their purposeful abandonment.
This IS evil at play / at work here and it must be STOPPED.
The tide IS turning, Rivka. You’ll see.
I do hope so. They can’t continue to get away with this while we wait and rot and try to scrape together a few dollars to fund our own research. What BS!
Once again thank you Jeanette for helping to uncover the evidence in support of what was suspected to be so.
Jeannette, thank you. As others have noted, the way you present these ridiculous, offensive, _______ (please fill in adjectives of your liking, my brain gets clogged because so many come to mind) shenanigans helps us laugh at least a little. The deeper reality, though, is that you’re unmasking their patent disregard for the reality of the people suffering what they don’t want to acknowledge. It’s disgraceful, as many have also said, that taxpayers are supporting this combination of cluelessness and malice. I don’t really have anything new to say, but reading the comments makes me feel less alone, and your work inspires me not to give up.
It makes me so mad to know how important my (and many others) suffering is so important that NIH will spend $6.00 on it. Then we have this circus planning a workshop on things that already have been done. WASTE OF MONEY, WASTE OF TIME, WASTE OF BREATH, WASTE OF SPACE.
All right! David Tuller has an article in Nov. 25 NY Times Science section on “Brain studies offer key to baffling disorder,” about the Stanford and Japanese brain studies showing abnormalities in people with ME/CFS. It’s a good article, and he raises that advocacy groups have criticisms of the government meetings coming up with people who have little to no experience in dealing with the disease and will be voting on how the government should deal with it.
Love the Keystone Cops analogy ! ……..Because I know that HHS are monitoring us , well here’s a clip for your pleasure boys and girls 🙂 …… https://www.youtube.com/watch?v=a8jphxpi1ro
VA Scandal ME/CFS Scandal—ME/CFS-Gate
VA Scandal—President Obama said, “Breach of Trust.”
VA Scandal—President Obama said, “Corruption.”
VA Scandal—President Obama said, “Corrosive Culture.”
VA Scandal—President Obama said, “Indefensible.”
VA Scandal—President Obama said, “Unacceptable.”
VA Scandal—President Obama said, “Those who created the scandal will need to be purged from system!”
Soooo, ya—the decades long ME/CFS Scandal – ME/CFS-Gate – fits all of these same corruption descriptors, culminating at present with the ‘rammed in’ HHS-CDC-NIH-IOM & P2P to redefine ME/CFS — against the advice of ME/CFS Experts and Researchers, citing further harm to patients.
“Breach of Trust—Corruption—Corrosive Culture—Indefensible—Unacceptable.
Those who created the scandal will need to be purged from the system.”
Yup—that all fits with ME/CFS Scandal – ME/CFS-Gate—and purging from the system needs to include those who continue to perpetuate the LIES and DECEIT, bringing harm to us.
These people are getting away with MURDER.
Their Hippocratic Oath of Do No Harm has failed miserably — by purposeful government direction.
Well, someone asked at Occupy CFS who will blink first — the do-nothing governmental committee members or the scientists. My money is on the scientists to ultimately win out. I don’t think Dr. Jose Montoya and his team, and the other researchers will back down.
I think David Tuller’s article will help to push down the house of cards. It’s very honest, and questions the two government committees. People have to be reading the NY Times articles. How will they react? The truth is starting to come out.
You, Jeanette and Jennie Spotila are finding out the truth and exposing it.
I wish that we could just file lawsuits against the HHS and NIH for ignoring science, denying funding, and not taking this disease and we sufferers seriously. And for all of the chicanery exposed in the documents here and the ones that Jennie found. I wonder who behind the scenes is calling the shots? Who is telling people to misrepresent the advisory committee’s recommendations? Who is telling the committee members to ignore the scientific studies?
I am optimistic that the truth will come out, and the cards will come tumbling down, as
happened with HIV/AIDS.
And you and Jennie, as well as so many others, are heroes.
“…zero concern… that our disease receives a pittance from NIH, or any attempt to improve NIH’s track record on that front. No… straight into how-can-we-make-it-look-better-than-it-is mode.”
Enacted in true bureaucratic fashion. The external and legitimate goal, for example successful treatment of ME/CFS, does not exist. The goal instead is to serve the bureaucracy and protect its image. Successful bureaucrats (“cogs”) are those who best serve the cog on the bureaucratic rung above them.
“Negative effects of bureaucracy… Bureaucracies concentrate large amounts of power in a small number of people and are generally unregulated… [T]hose who control these organizations control the quality of our lives… Bureaucracies tend to generate oligarchy…”
“Bureaucratic hierarchies can control resources in pursuit of their own personal interests, which impacts society’s lives greatly… It [bureaucracy] also affects society’s political order and governments because… corruption remains an issue. The goal of the bureaucracy has a single-minded pursuit… what might be good for the organization might not be good for the society as a whole…”
“While bureaucracies are supposed to be based on rationalization, they act in the exact opposite manner. Political bureaucracies are established so that they protect our civil liberties, but they violate them… Service bureaucracies like health care are set [up] to help the sick and elderly, but then they deny care…”
The image of the caged bird on the cover of the IACFSME Primer is very fitting, as ME/CFS stakeholders are fighting for liberation from both a disease and the iron cage of a dysfunctional bureaucracy–i.e.bureaucratic pathologies.
“The failure of an organization to serve its intended purpose is known as a bureaucratic pathology. Government bureaucratic pathologies commonly come in the form of bureaucratic imperialism, failure to adapt to changing circumstances, and displays of favoritism of interest groups over the public at large.”
We don’t have to take this lying down. We can be heard with a National PR Campaign for ME. https://meadvocacy.nationbuilder.com/donatepr
I echo the sentiment above, if there is a class action lawsuit, sign me up.
I’m torn between anger at all of the chicanery and cover-ups, and amazed at the idiocy of
the conversations being exposed.
Don’t any of these people read scientific studies and articles about them?
This is such a travesty.
I think that the truth is starting to come out, but slowly and not soon enough.
What will change this scenario around?
“After all, we are talking about a disease that is highly controversial (and thus, not a disease topic the P2P program is supposed to be used for, according to NIH’s own rules)…”
Should it be useful or interesting for timeline purposes,* some recent P2P observations: “The first workshop, held in 2012, examined the evidence for Polycystic Ovary Syndrome (PCOS)”** – which I understand to be one of the many illness (including ME/CFS) co-opted by Per Fink. In late 2012, there was also a Physical Activity Workshop.
Under (P2P) “Other Programs and Events” are references to the Consensus Development Program (for controversial medical issues) and Medicine in the Media (to help journalists evaluate and report medical issues “in the most accurate way possible”).** The Consensus Development Program was retired in 2013, and groups such as IOM and the Cochrane Collaboration are instead recommended to evaluate controversial medical issues.*** Medicine in the Media was also retired in 2013.****
And just as an added note, another (and others?) recent P2P workshop – opioids and chronic pain – may have implications for ME/CFS.*****
I just finished writing my P2P response (“I completely reject the P2P draft report and the
contrived process used to create it.”) and came back to this page for some comic relief.
These people are in trouble and I think they know it. The usual tactic of drowning out critics with propaganda until the masses are lulled back to sleep (known as the “Manufacture of Consent”) won’t work against us. There are too many smart patients that know how to yank bureaucratic chains, like Jeannette. Plus we have nothing to lose, since it’s either fight for help or be sick until death.
I hope you don’t mind, I mentioned you and your FOIA fight. If the report writers do actually read the public comments, they will not be able to claim ignorance of the fraudulent process they have been railroaded into, or the unethical actions they are now a part of.