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)