On January 3, 2014, just three days before the P2P Working Group meeting, a troubling series of emails was exchanged among NIH leadership. These emails show confusion at the leadership level about the ME/CFS P2P and IOM efforts, and a narrow concern from Dr. Francis Collins himself about the topics for P2P.
I obtained these emails through FOIA. I’ve posted the emails for you to read in their entirety, but the organization can be confusing. The emails are also heavily redacted, which I have appealed. In this post, I’m using a narrative format because it is critically important that every ME/CFS researcher and advocate understand this story. Bottom line? No one in charge seemed to understand what was going on, and the implications of that are frightening.
On January 3rd, Cort Johnson’s article about the dramatic decline in NIH’s commitment to ME/CFS over time appeared on ProHealth, and a note about the article appeared in the NIH internal news summary that day. This prompted Dr. David Murray (Director of the Office of Disease Prevention) to email his staff to ask for their input on a draft email to Dr. Francis Collins about the P2P meeting. The draft is redacted, as is a comment from staff member Jody Engel.
Dr. Murray then sent the following email to Dr. Collins (copying four other staff members in the Office of the Director):
I noticed the item in today’s news briefing regarding chronic fatigue syndrome. The report suggested that NIH was falling behind in this area.
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. Jim Anderson was involved in the initial proposal development and selection of the Working Group members. Janine Clayton and Susan Maier at ORWH have been involved from the outset. The first meeting of the Working Group is scheduled for Monday, January 6 and the target date for the workshop is Fall 2014.
We generally don’t publicize these workshops until they are further along in the planning and have HHS approval, but I wanted to share this with you so you were aware.
This is pure politics. The planned P2P Workshop in no way changes or addresses the decline in funding that Cort discussed in his article. The Workshop does nothing to avert the trajectory of NIH falling behind on ME/CFS, especially in light of everything else NIH is refusing to do. Dr. Murray saw an opportunity to put his office’s work forward, and he did.
Almost immediately, Dr. James Anderson emailed Dr. Murray and said,
Remind me- the goal of the ODP WS is to provide a research definition for ME/CSF [sic]. We are not wandering outside that box. The IOM meeting [redacted].
This is remarkable. NIH had been saying quite clearly at CFSAC meetings that the purpose of the workshop was not to come up with a research definition. Yet here is the Director of Program Coordination, Planning, and Strategic Initiatives saying the precise opposite. Before replying, Dr. Murray turned again to staffer Paris Watson and said, “I need to clarify the purpose of the workshop. It is supposed to be used to [redacted].” Is Dr. Murray asking Watson because he doesn’t know the purpose of the workshop?! This is precisely what we’ve already documented: the purpose of the P2P meeting has shifted over time and NIH has made contradictory statements about it. Apparently, this is true internally as well.
Shortly thereafter, Dr. Murray responded to Dr. Anderson, saying in part, “The goal is to address methodological issues that are holding up research in this area. So the working group will tackle the issue of what diagnostic criteria should be used in research for ME/CSF [sic].” Anderson then replied:
I think Francis needs a follow-up email explaining how the NIH and IOM goals are different. Our goal is to provide a more useful definition of ME/CSF [sic] so that our research investments produce the highest quality and valid results. [redacted]
I don’t think any ME/CFS researcher or advocate is under the illusion that the Director of NIH has our disease forefront on his mind or agenda. There’s not enough money involved for that to be the case. But I find it troubling that Dr. Collins needed an explanation of how the “NIH and IOM goals are different.” Given the controversy, and given NIH’s role as a primary funder of both initiatives, shouldn’t someone have already briefed Dr. Collins on this – or at least his senior leadership staff?
Dr. Murray turned his attention to drafting a follow-up email to Dr. Collins, again relying on Paris Watson and Dr. Susan Maier. There are some significant and troubling statements in the resulting email:
Jim Anderson suggested that I follow my earlier note to [redacted].
Our P2P workshop will review the various definitions for ME/CFS that have been used in research studies to clarify the type of patients that are captured under each definition and how those patients respond to various therapeutic options. This will inform future research by providing a better understanding of the implications of choosing one definition over another as studies are being designed. Our audience will be researchers working in ME/CFS.
The IOM effort will also review the various definitions for ME/CFS but their goal is to 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 IOM’s interest in this topic. We have been communicating with them to avoid duplication of effort. They have invited Susan Maier from ORWH to their first meeting to discuss our P2P Workshop “in an effort to minimize overlap and maximize synergy.”
First, note the promise that P2P will clarify which patients are captured under each case definition and how that affects response to treatment. Whatever the plan was in January 2014, we now know that P2P will not do this. The evidence review made no such distinctions and lumped all the case definitions together. There is no indication that anyone is going to address the question of how case definition predicts response to treatments. Second, note the statement that IOM’s audience is not researchers. Does this signal an intention that researchers not use the IOM output? Fukuda was intended as a research definition, but it’s been used clinically for 20 years. If IOM produces an accurate and precise case definition, shouldn’t researchers be the exact audience that needs to pay attention to that? Finally, Dr. Murray admits that the P2P planning was underway for “sometime” when they learned of the IOM’s “interest” in the topic. In other words, there was NO coordination between the P2P and IOM ideas, as many of us suspected.
Finally, Dr. Francis Collins responded to the emails from Dr. Murray:
Thanks for the heads up. I hope there will be some attention to the microbiome as part of this CFS workshop.
I will admit that when I first read this email in the FOIA packet, my jaw dropped. Out of all the ME/CFS issues, including case definition (which Dr. Collins himself personally noted was a problem at the 2011 State of the Knowledge Workshop), what he asked about in January 2014 is the microbiome. Why?
I can only speculate, but perhaps the answer lies in what Dr. Ian Lipkin told Mindy Kitei in May 2014. Dr. Lipkin, whose effort to find funding for his ME/CFS microbiome study is well-known, said, “I’m on the advisory committee for Francis Collins, and I can tell you that Francis Collins, the director of the NIH, believes that chronic fatigue syndrome is a problem.” Have Drs. Lipkin and Collins discussed the microbiome study? Have they discussed the poor scores given to Dr. Lipkin’s grant proposal by a reviewer who said ME/CFS was a psychosomatic illness? Personally, I hope they have discussed it, but for this topic to be Dr. Collins’ “hope” for the workshop strikes me as myopic, at best.
As one would expect, an email from the Director of NIH received immediate attention. Dr. Murray quickly asked Dr. Maier and Paris Watson if the microbiome was in the plans for the P2P workshop. Dr. Maier responded, “I am sure that the microbiome will be discussed as part of the scientific content at the actual workshop, however, the purpose of the P2P really is to help determine the extent of evidence surrounding the case definitions . . . “ Dr. Maier also quickly told Dr. Murray and Dr. Anderson that “Microbiome is playing a larger role in ME/CFS research, with at least 2 of 16 projects following this approach as the primary objective, and others with a smaller focus on microbiome in general.”
Simultaneously, Deputy Director of NIH Dr. Lawrence Tabak emailed, “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 – if not I can find out.” And now confusion really spins out of control.
Dr. Murray, now quite flummoxed, emailed staff member Wilma Peterman Cross in part, “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. I hadn’t intended to spend most of my morning on this . . . ” Turning again to Dr. Maier and Ms. Watson, Dr. Murray asked, “Do either of you have 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.”
Ok, let’s pause for a minute. NIH is co-sponsoring the IOM study under their contract with the National Academy. The IOM contract had been controversial for months, and Dr. Maier was scheduled to speak at the IOM meeting in just three weeks. Yet the Deputy Director of NIH had no idea what is going on with it, Dr. Collins needed an explanation of the difference between IOM and P2P, and now Dr. Murray had to scramble to figure out if there was a third meeting he was not aware of. Am I surprised? No. Is it disheartening to see how far off the radar ME/CFS is? Absolutely.
Dr. Maier, one of the only NIH staffers who appeared to know what was going on, replied, “Yes, the 2014 workshop from HHS is the IOM workshop/study. Those are the only 2 I know about other than a potential in house one at NINDS looking at brain fog in general.” Dr. Murray then sent a final email to Dr. Collins and Dr. Tabak, repeating what he said before about the P2P vs. IOM effort and saying, “Francis…At least two currently funded projects on ME/CFS address the microbiome. That topic is very likely to come up at the P2P workshop in the fall.” Of course, we now know that the microbiome is just one of many categories of ME/CFS science that will not be discussed at the Workshop.
These emails are a telling snapshot of NIH leadership’s scramble, on the eve of the P2P Working Group planning meeting, to figure out the purpose of the P2P meeting and its difference from the IOM study. Even the Director of the ODP – the office charged with running the P2P Workshop – does not seem to understand the purpose of the Workshop and how it fit (or failed to fit) with other NIH efforts.
Furthermore, Dr. Collins’ only response to the blurb from Dr. Murray about the P2P Workshop is to say that he hopes the microbiome will be covered. Even if Dr. Collins is not tracking ME/CFS (and I doubt he is), how could the microbiome be the foremost issue in his mind? As I said, Dr. Collins attended the 2011 State of the Knowledge Workshop and acknowledged the importance of resolving the case definition issues. He sat and listened to Dr. Suzanne Vernon summarize the gaps in research and the issues that needed attention. But in January 2014, he only mentioned the microbiome – a topic that his colleague Dr. Ian Lipkin is interested in investigating.
I have no doubt that the P2P Workshop will open with statements from Dr. Anderson and Dr. Murray that this is a significant demonstration of NIH’s commitment to ME/CFS patients and research. That is how these meetings always begin. And I would love to hope that the Workshop marks a new chapter of increased attention and funding for ME/CFS at NIH. But given the confusion among leadership in January 2014, I have some trouble believing this to be a realistic hope.
This whole email exchange started because of the news item claiming that NIH was falling behind in its commitment to ME/CFS. Dr. Murray basically says Hey Dr. Collins, it’s not true because we’re planning a meeting. And then for three hours, leadership muddles around trying to figure out what exactly the meeting is about and how it differs from the IOM contract. And the only thing Dr. Collins says is, I just hope you cover the microbiome.
It’s not just the confusion that bothers me, or even the narrow focus on one researcher’s interest in the microbiome. It’s the mindset reflected in that first email from Dr. Murray to Dr. Collins. It’s the bureaucratic mindset that responds to evidence of NIH’s failure to make any progress on a costly and disabling disease with “We’re having a meeting.”
The P2P Workshop represents an opportunity to get it right. It could address the problems that are holding ME/CFS research back. That may even be the intention of staff like Dr. Susan Maier, and it is certainly the intention of the ME/CFS expert members of the Working Group. But given the deeply flawed evidence review, the closed door selection of Panelists, the exclusion of many experts and important topics, and the inclusion of speakers who believe ME/CFS is a functional somatic syndrome, is it realistic to believe that the Workshop will start a new chapter and begin to make up for the stagnation of funding? What do you think?
Wonderful stuff, Jenny.
As a blogger it energizes me greatly to hear that some blogs make it up to the NIH. That was one of the most important blogs I felt I’ve done (http://www.prohealth.com/library/showarticle.cfm?libid=18575) but ironically was not viewed much. (The next blog is going to blow their socks off.) Note that Murray did not dispute the decline in funding for ME/CFS at all – he simply said we’re doing more now…
Besides the utter confusion found at the upper levels of the NIH regarding their efforts on ME/CFS the blog also highlighted how important Collins voice is -and the effects Ian Lipkin is starting to have – although Lipkin’s grant for microbiome study was rejected…
At least we know we’re being discussed….I guess that’s something…
It’s encouraging to know they’re reading our stuff! Way to go, Cort. 🙂 And Jennie! I guess they read yours, too. 🙂
I agree that was one of your most important blogs, Cort!
Big cheers to Jennie and Cort for such great blogging which apparently once in a while does get through to the people who have the power to actually help the ME patient community. A community which suffers almost unbearably.
Wow, Jennie–thanks a million for clarifying the unbelievable confusion underlying this insane P2P nightmare. A radically incompetent bureaucracy trying to push aside top flight researchers and assume leadership in ME/CFS without knowing anything about it, and while still clearly nurturing a deep disbelief that these initials can really point to any significant disease state–as demonstrated the hard way by the ongoing refusal to spend more research money on us ( your “No and No” blog made that quite clear.
They really should come clean, confess the total mess they have made of this project, scrap it, and begin again with a bit more knowledge and considerably more humility. And they could make a good start by funding Ian Lipkin’s project, instead of forcing him to attempt to crowdfund it with us. The P2P project is a shameful misuse of public money.
Chris
On the other hand I disagree with your profoundly negative conclusions. The NIH is actually spending extra money on this disorder for the first time in years. The participants are, in their emails, referring to a process to identify research gaps in order to move the field forward. They’re not belittling ME/CFS.
As I’ve noted I don’t believe the evidence review was “deeply flawed”. I believed they used the standards they thought were appropriate and in doing so they uncovered deep flaws in ME/CFS research efforts. I imagine another AHRQ panel would have come to a similar conclusion.
I understand the dismay at all the studies that were excluded. On other hand if you read advocacy reports on the AHRQ you would come to the conclusion that there’s nothing wrong with the ME/CFS research and that’s not accurate either.
Yes, they are confused but they probably all have many plates they are juggling. The Office of the Director contains about 100 Departments in it – http://oma.od.nih.gov/public/MS/organization/Organization%20Charts/OD-NIH.pdf. Given that I would be really shocked if he knew anything that was going on in the ORWH and ME/CFS. That stated I remember he did sit in on some ME/CFS meetings and people pointing him out with hushed voices :). That doesn’t seem to have made much of a difference – but I had no idea the OD was such a large organization.
I don’t believe the Workshop will open a new door, but I do believe the P2P and IOM reports – which apparently came from different players in the NIH (a good sign really) should set the stage for the first RFA in over a decade.
Oh Cort, you have no idea how desperately I wish to share your optimism. I’m not a pessimistic person, by nature. To some extent, we’re reading tea leaves. The only hope for an RFA is direction from this Workshop. NIH already said we don’t have the data or number of investigators to justify an RFA, but they left the door open a crack for information coming out of meetings. If we get a well-crafted RFA, I will be the first person to stand up and cheer.
Your earlier report- which I just read was so disheartening – so disengenuous as well. The NIH continues to be more foe than partner that’s for sure.
To be clear, I would have much rather had an RFA on the autonomic nervous system or some other aspect of ME/CFS than one on a new definition…
I want an RFA for etiology and biomarkers, allowing us to do large studies on gene expression, autoinflammation, metabolic dysfunction, brain imaging and more! What a bonanza that would be!
Cort, you have a myoptic view. Other FOIA disclosures indicate more nefarious actions are taking placin in violation of Federal Rules of Procedures and Regulations.
What do I think? To err is human, but for a real SNAFU you need a bureaucracy…
These people are pathetic. Real researchers doing real research will have some answers for us while NIH is still trying to find its way out of a wet paper bag.
Do you think
It might be time
To stopping putting ten times more thought and effort
Into these meetings
Than the government does?
Joe–I think you are sadly right. My family is concentrating on other avenues. It seems a hopeless case with the government. Maybe we need to unite all the individual awareness groups somehow.
Great work, Jennie.
How pathetic that a mere blog sends them scrambling. It angers me that our tax dollars are spent on such ludicrous monitoring and damage control.
Here’s an idea: do great work, and bloggers will write great things about you; then you won’t have to waste time, energy and taxpayer dollars monitoring and planning your defenses. It’s called LEADERSHIP.
I don’t give them a pass for having a lot of plates to juggle. ME/CFS is a serious health concern in our country. There are lives at stake. They’ve had DECADES to get it right.
EVERY MOMENT OF THEIR INCOMPETENCE IS ANOTHER MOMENT OF PATIENTS’ SUFFERING. That’s the bottom line. As human beings, that is what should concern them, not appearances.
Thanks for sharing this info Jennie. We are learning a lot these days, thanks to you and Jeannette.
Well said Carrie, you stole the thoughts from my mind. HHS/NIH lack of communication, mismanagement and general incompetence is almost comical if it weren’t for the fact that there are an estimated 1 million patients in the US who are suffering from ME/CFS, many who have been severely disabled for decades. Not even mentioning the wasted tax dollars that could be going to fund the bio-medical research that is so needed.
Thanks to Jennie and Jeannette for all their work uncovering this mess and for delivering the evidence!
Thanks, Cathy. It’s truly mind boggling there are lives in the balance and they’re worrying about appearances!
Hi Jenny, thank you so mcuh for writing this.
from your work and Jeannette’s work, we are learning interesting details of what is happening behind the scenes and it’s not pretty.
i share your worries and do not feel optimistic at all that P2P will make anything better for us, and in fact it will harm us patients further.
i think it is time to ask for resignations within NIH. FOIA have shown, despite too many redactions, that there is a lack of respect for the patient population, and without respect, we go nowhere.
Brilliant! Absolutely brilliant! It’s like something from Yes, Minister or In the Thick of It — British sitcoms, the former from the 1980s, the latter a current sitcom of the last several years, in which the comedy is derived from low-level cabinet ministers who are generally incompetent but scramble desperately to look good in front of the prime minister or, rather, his chief of staff (and, to some degree, the public they are ostensibly serving).
Given David Wright’s letter of resignation detailing the bureaucratic incompetency at DHHS, I can’t say I’m surprised (except the part about IOM approaching NIH, which I thought was the other way around…just, huh?). At the end of the day, this isn’t about NIH or HHS wanting to maintain ME/CFS as a psychosomatic condition (they don’t give a crap one way or the other), it’s about them being too incompetent to know what to do with us while being too busy doing the things bureaucrats do — acquire more power and prestige for their specific bureaucratic fiefdoms (i.e. the reason NIH has to do something on ME/CFS since CDC is doing something). So, as you perfectly state, Jennie, they solve the problem with… meetings. They talk to people who seem to know something about ME/CFS (Lipkin) or bring in someone they remember who does work in ME/CFS (Buchwald) or remember what someone they used to know said about it (Straus). (I’m reminded of the high-level NIH meeting in 2010 with Robert Miller, Rivka Solomon, Dr. Peterson, and others where Mike Gottesman told the group that ME/CFS patients lost a strong advocate in Stephen Straus. Tone deaf from our perspective, but the man really didn’t know any better and they all still don’t. Indeed I often feel like the ghost of Stephen Straus is haunting much of this P2P process because they haven’t got anybody else whispering in their ear.)
While I also do not share Cort’s optimism above, I do agree with him that one big problem for us is that people like Dr Murray are juggling too many things to pay the attention to ME/CFS that we need him to. And it is also human nature for bureaucrats (all of use, really) to want to save face. While it is not as emotionally satisfying as hearing an apology for the truly appalling way NIH/HHS has dealt with ME/CFS for the past 30 years, our advocacy may be more effective in the future if targeted at providing ready-made solutions within the existing NIH bureaucratic framework that will also make those in the bureaucratic hierarchy look good (i.e. “do X, Dr. Collins, instead of P2P…” or “you’re right, Dr. Murray, we should have a meeting and it should look like this…”). Technically that’s what CFSAC is supposed to do/is doing, and I readily admit that I don’t know specifically what it or we can be doing beyond that, though a charm offensive instead of/in addition to the angry approach would be a start (and may be going on already for all I know). And we absolutely need congressional patronage when it comes to funding (which is pretty much what that recent NIH response to CFSAC’s recommendations said when reading between the lines). Of course, we very much need some healthies to help us.
The one bright spot about this FOIA email narrative is that it shows us how potentially manipulatable these NIH people are because of their ignorance and desire to show they are “doing something” — a fact HIV activists figured out and exploited successfully (as do other pressure groups throughout our government bureaucracies). Figuring out how we can exploit that given our profound limitations is the million-dollar (literally) question for us.
(As always, apologies for my insane verbosity.)
CFSAC recommendation of 2012 asked HHS for a workshop of ME/CFS stakeholders to convene to work on the research and diagnostic criteria starting with the Canadian Consensus Criteria (CCC). (Meaning: we need to move on from the outdated, too broad CDC’s Fukuda criteria)
HHS’ reply came in the form of an online statement that they have contracted with the IOM to define criteria for ME/CFS. (Meaning: we will do it our way)
In reply, 50 ME/CFS wrote the famous letter to HHS urging them to put a stop to the contract with the IOM and to adopt the CCC now. (Meaning: We (experts) know the disease and government bureaucrats don’t)
In reply….well there was no reply really except that they (HHS) ignored the multitude of experts and advocates and forged ahead full force with the IOM contract and P2P process as well. (Meaning: We (bureaucrats always know better – don’t tell us what to do.)
Except that every step of the way and now it is clear for all to see by the facts leaked out with the FOIA produced e-mails, HHS has no clue of what they are doing.
The question is, why spend all this money and go through all these loops just to produce two processes that are not needed nor wanted? Why not just accept/adopt the CCC as proposed by CFSAC and work on refining it by stakeholders?
No one wanted the IOM or P2P except the government. What do they have to gain by angering all and forging ahead? Does anyone really think that the result of either of these processes will produce anything better than the current CCC?
Do we really have to go through this whole process of the p2p to gain the knowledge that NIH spending on ME/CFS research is lacking? Everyone knows that it is lacking and everyone knows where it is lacking.
Keeping all these questions in mind, I don’t believe that all this is due to bureaucratic mess up. I believe that HHS did not want to adopt the CCC (and work on refining it) because that would be admitting that ME/CFS is a clear biological disease.
There is a clear intention to dilute the disease and make it look so murky, as to be unrecognizable as a distinct disease entity.
Yes, Gabby, Yes!!
“Keeping all these questions in mind, I don’t believe that all this is due to bureaucratic mess up. I believe that HHS did not want to adopt the CCC (and work on refining it) because that would be admitting that ME/CFS is a clear biological disease.
There is a clear intention to dilute the disease and make it look so murky, as to be unrecognizable as a distinct disease entity.”
This is the name of their deceitful game.
Jennie,
When you get better, if you don’t go back to law, your future is made as an investigative journalist! Exceptional, extraordinary research! Thank you so much.
What strikes me immediately is WHY would emails about ME/CFS need to be REDACTED??? Those at the NIH are paranoid, and also think they are far more important than they are.
Secondly, Collins’ cluelessness about all of this indicates that he never got the hundreds of emails that were sent about eliminating the IOM study and having the NIH simply adopt (and save $1 million of taxpayer money) the CCC definition, as the experts demanded. He has got, as was said of the Corteleone family – lots of buffers. So in the future, writing to Collins is simply wasting our time. In the future, we need to inundate all the underlings with hundreds of emails and clog up their inboxes to get their attention.
Thank you, Cort, for being the instigating factor in all of this. Can’t wait to read your next blog to “blow their socks off.” I do not share your optimism at all, however. These people have proven for 20 years (different cast of characters, same mindset) that ME/CFS is (1) not important, i.e., not a loud or big enough lobby to bother with, (2) probably just psychological anyway, and, therefore, (3) not worth NIH money, time, or attention. Nothing has changed. (The same goes for the CDC.) The IOM should not have been planned or funded – unnecessary. The P2P should not have been planned or funded – unnecessary and a first-class screw up. If the IOM turns out to have a good result, it will be a gift, but still unnecessary. We could have spent our time since then lobbying for more funds, instead of all this distraction from the real needs of patients if the NIH had been willing to accept the CCC definition.
Silly me. And I thought it was just about the money — not spending, that is. Keep this disease psychosomatic and the symptom that darn nebulous “fatigue,” and billions are saved on federally funded research and insurance company costs.
Alas, I’ve learned that these people are neither organized nor sufficiently intelligent enough to pull that off. The blatant incompetence boggles the mind. It appears as if two women crafted a P2P planning meeting inviting people of their choice, all without the knowledge of their bosses. The planning meeting quietly evolved into workshops, and now everyone is confused? Someone’s head should roll if just for the waste of taxpayer money. BTW, which one of the panel’s ME/CFS pseudo-experts will be presenting the microbiome?
Thanks, Jennie, for putting the emails in a narrative form for your readers.
@Cort you are wrong, and way over your head. You do not understand the politics in Washington. The fix is in. This is a kangroo court of epic proportions. Similar to the IOM contract, the P2P is being influence by the powerful lobbyist of the medical, health and disability companies and the APA to keep ith illness a bio-social-psych model. That is why they brought in the heavy hitters, Buchwald and her ilk. They have the credentials from flawed research studies similar to PACE to back up their claims. I know Buchwald from the comments of other researchers at the University of Washington. She will be the point person to keep this as a functional somatic disorder under the flawed DSM-V manual.
Only one has to follow the money from the insurance companies, previous case law on class action lawsuits against this industry, and the type of research supported by the health insurance industry to understand the outcome. Campaign contributions from PAC and other special interest groups will buy the influence to pass laws and regulations favorable to that industry. Naivety comes from the patient groups. Only a successful court action in Federal Court under a civil RICO against the villians in this drama, or by way of Congressional investigation is the way to change the outcome.
Thank you, Jennie…
According to a PR post, the chair of the IOM panel for “Chronic Multisymptom Illness in Gulf War Veterans: Case Definitions Reexamined” (2014) was Kenneth Shine, “both a Director of United Health Insurance (undisclosed in bio) and a past President of IoM. UnitedHealth is the nation’s largest health insurer with $5.1 Billion in profits in 2011.”
Why would IOM want to influence government policy?? Don’t worry. If you give a “refractory” answer, a government-selected psychiatrist will help you. Maybe someone like Per Fink. Or his associate, Rick Steele, a “leading expert in rehabilitation of disabled persons.”
Steele has said, “The common endpoint for these syndromes [medically unexplained syndromes, including GWS, CFS PVS, etc.] is a disability pension. The enormity of this problem boggles the mind. Merely supporting this group of patients financially rivals half of the public outlays for health care or social benefits in northern European countries, and although similar figures are not available in North America, there is no reason to doubt that supporting this group is enormously expensive, and that an effective treatment modality should be enormously popular…
This is a battle that requires balance, wit and prowess, and even more, a dogged conviction that you are right even though you are often attacked as the unknowing party in the discussion. Indeed, at meetings in the field, critics of the express train [i.e. current research protocols which don’t consider individual psychological traits and circumstances that perpetuate MUS] are lambasted much as the heretics of old, and it takes stamina to continue the fight. But fight on we will, and we will prevail. The patients we fight for are not able, so less will not do.”
http://magazine.jhsph.edu/2009/fall/online_extras/alumni_dispatches/richard_steele/
http://www.ricktig.dk//klinikken-livet/A%20Novel%20and%20Effective%20Treatment%20Modality_JPM%201%234.pdf
What a nightmare.
What confusion, how embarrassing!
If the NIH really wanted to move the ME/CFS field forward, different courses of action would have been much more appropriate.
To follow the CFSAC’s recommendation would have been a logical way to go. Or, in 2011, NIH could have issued an RFA after their State of the Knowledge Workshop on ME/CFS which constituted a rather good review of the state of the research field, the gaps and the promising leads.
Instead, they have – under much confusion – chosen the P2P format and based it on a review focusing on evidence-based diagnosis and treatment. In an immature field which has received next to no funding, this is simply the wrong way to go.
The NIH could have done a review on the existing studies on etiology, allowing for small studies and less-than-perfect studies given the massive lack of funding for the ME/CFS research field. This way they could have created a good overview of the existing biomedical studies and decided on which seem to be the most promising research leads – in order to then issue a well-informed RFA.
To just skip the etiology phase in such an immature field and go straight to diagnosis and treatment isn’t logical or effective. How could there be evidence based diagnostic markers and treatment when researchers are still struggling (with almost no money) to determine the cause, disease mechanisms and subgroups of ME/CFS?
THIS is what the NIH should be focusing on. One has to start at the beginning. With a 20-fold increase in funding, bringing us up to the normal level for similar diseases (such as MS), and an RFA focused on disease mechanisms, subgroups and biomedical treatment, we could actually get somewhere.
(Do they want us to get somewhere? Do they want to give hope to all the ME patients lying in dark rooms, or living enormously restricted lives, enduring almost unbearable physical suffering? One, sadly, wonders.)
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