Can you trust someone if you think they don’t respect you? There is an abundance of mistrust and disrespect among all participants in the ME/CFS landscape. I think it’s important to talk about because these attitudes have a significant impact on how we make policy decisions and engage with one another. The current conflagration over the Institute of Medicine case definition study is a direct result of the distrustful climate, and we have to see it for what it is if we have any hope of fixing it.
The majority of my fellow advocates do not trust the government and do not feel respected by federal employees. We have a long list of reasons and experiences to support this view. I am going to be very specific about the incidents I have observed and can document. I’m not doing this to stir people up or aggravate what is already a highly charged atmosphere. This information is key to understanding the basis for mistrust and suspicion. I know that non-patients read this blog, and they need to hear specifics too.
Setting the Stage
Problems between ME/CFS advocates and HHS have persisted for decades. There is a heavy legacy that poisons every interaction. I have personally witnessed this. Here are a few incidents that have contributed to my own mistrust of HHS, but I have heard of many many more.
- When I requested documentation on CFSAC nominations, I was told that the Office of Women’s Health did not keep those records. This was not true, and those documents were produced after I filed a FOIA request.
- I have another pending FOIA request for additional nomination documents. In a partial response, I was told that all the documents had already been released to me. This is not true, and I have two documents to prove it. I am still waiting for a response to my challenge.
- There is a well-documented example of the CFSAC violating the Federal Advisory Committee Act. I can document other incidents as well. These seem like squabbles over rules and technicalities, but in my opinion it is indicative of a casual or cavalier attitude of disrespect, an attitude that doesn’t see us as being very important.
- We have unresolved allegations on the record that Dr. Nancy Lee threatened to remove one or more CFSAC members for expressing their views.
- On more than one occasion, my polite requests for information have not even been acknowledged by the individual or agency I addressed.
- On more than one occasion, I have witnessed a federal employee complaining to one advocate about other advocates. This is unprofessional and disrespectful.
After Assistant Secretary Koh said that CFSAC was the path for stakeholders to engage with HHS, I joined other advocates in trying to reach across the divide to have respectful dialogue about our concerns. But in the last year, I have seen that divide grow wider and deeper as our concerns were dismissed or rebuffed again and again.
But the mistrust and disrespect flows both ways. Federal employees have indicated that they feel under siege or targeted by ME/CFS advocates. Their negative experiences with advocates must contribute to their views of the community, and I would not be at all surprised if they mistrust us. I can document a few examples, but I’ve heard of many many more.
- A federal employee complained to me about the volume of emails that patients send HHS, and also complained that some of those emails are nasty. This was indicative of that employee’s view of the advocacy community, both in complaining to me about my fellow advocates but also the employee’s negative experience of interacting with advocates.
- Dr. Nancy Lee said at the CFSAC meeting on June 14, 2012: ““I just want everyone to know that all of the people up here, both our non-federal committee members and our federal committee members, are committed to this topic [ME/CFS]. . . . We are very committed to this or we wouldn’t be here.” I noted at the time that this comment seemed oddly defensive, coming right after a public comment segment and the lunch break.
- Dr. Susan Maier (NIH) said at the CFSAC meeting on May 23, 2013: “I have had people laugh at me; I’ve had people accuse me of giving them information that is wrong; I’ve had people tell me that I’m not helping them. . . . I’m tired of people telling me that I’m wrong and being misquoted.”
These incidents are just the tip of the iceberg. I know my fellow advocates can cite dozens upon dozens of examples of things HHS, the agencies, and individual employees have done or said that demonstrated disrespect for ME/CFS patients. These incidents have directly contributed to the pervasive mistrust of HHS. On the other hand, we have to acknowledge that those individual employees are human. Their experiences may have contributed to them distrusting us.
And Then There’s IOM
Into this existing atmosphere of mistrust and wariness, the Institute of Medicine project and how it was handled by HHS was the equivalent of dropping a match on a lake of gasoline. This is total conjecture on my part, but I suspect that the way HHS behaved in the last month was motivated in part by their distrust of the advocacy community. But by behaving in this manner, HHS demonstrated incredible disrespect for the community and guaranteed the explosive reaction they got from us. Look at this timeline summary:
- Spring 2013: HHS develops the idea of tasking the Institute of Medicine to create a new clinical case definition for ME/CFS. We don’t know who was involved, when it started, or how it evolved. But we do know that not a single word was said to the public or the advocacy community about this. Several sources have told me that HHS made a conscious decision not to consult us.
- August 27, 2013: The sole source solicitation notice is published on FedBizOpps. No announcement is made by the Office of the Assistant Secretary or anyone else. An ME/CFS advocate finds the notice and begins spreading the word.
- August 27-September 2, 2013: The advocacy community gets organized and begins protesting the project via email and other means.
- September 2, 2013: The intent to contract with the IOM is announced via the CFSAC listserv.
- September 4, 2013: The sole source solicitation is canceled due to “all of the concern from the public.” A second update states that “HHS will continue to explore mechanisms to accomplish this work,” but no further details are offered. The email campaign continues.
- September 12, 2013: CFSAC announces via its listserv that it continues to work on a contract with IOM and that information will be released AFTER it is finalized. The issue will be on the agenda of the November CFSAC meeting.
- September 4-September 17, 2013: Multiple advocates, including myself, try to engage with the Office of Women’s Health and other people at HHS to get any information about the IOM contract, and attempt to offer constructive input. None of us are successful. I am not aware of anyone at HHS reaching out to the ME/CFS community in any way.
- September 17, 2013: We learn that the contract will be signed before September 30th.
- September 23, 2013: We learn that the IOM study has been authorized, and will begin this month. Apart from the listserv announcement, no further information is offered. My inquiry for additional information has been ignored.
- September 23, 2013: We learn that 35 clinicians and researchers sent an open letter to Secretary Sebelius urging her to adopt the (nicknamed) Canadian Consensus Criteria and abandon the IOM effort. To my knowledge, there has been no response from HHS.
Walking this timeline as I have, and knowing the prevalence of mistrust and disrespect going into this situation, I still find it shocking. The intentional failure to engage the advocacy community before or during this controversy is astonishing. The piss-poor communications via the listserv made everything worse. I feel like we are on an elevator, and HHS has cut the cables. We are plummeting down and I have no trust that there is a soft landing waiting for me.
Every single advocate I know asked themselves: why did they withdraw the contract and then pursue it in complete secrecy? How can anyone trust that this IOM process will be good for us? If their intentions are good, and they truly plan to use experts to create the new case definition, then why in the world didn’t they say so at the beginning? Why didn’t they show us the basic respect of telling us what was going on? At the same time, I imagine that HHS employees were thinking something like “Don’t tell them anything because they’ll freak out and cause trouble.” But if that is the case, then their distrust simply guaranteed that they would elicit the response they feared. And I have to believe that if the relationship between advocates and HHS had not deteriorated to the degree it has in 2012-2013, then perhaps our reaction to this current debacle would not have been the same.
We Are Where We Are
So here we are. The IOM study is authorized, and I presume it will begin shortly. I must note here that we still have no definitive information about it beyond the listserv announcement. Thirty-five experts are now on record saying that no further study is needed to adopt the CCC. Advocates continue to press this point and are requesting that the IOM study be canceled. This document gives a superb summary of why.
The distrust is truly toxic to finding the right solutions. Advocates don’t trust HHS, and can point to a multitude of reasons why. HHS (or at least a number of its employees) don’t trust the ME/CFS advocates, and may even actively dislike or disrespect us, and can point to their own multitude of reasons why.
Maybe HHS will listen to the thirty-five experts – or Congress – and adopt the CCC. Maybe more experts will join the call. Maybe the IOM study will go forward in a way that relies on experts and adopts the CCC or something similar. Maybe the IOM study will go forward and result in a definition that lumps us all under a giant nonspecific umbrella of fatigue.
In my conversations with advocates, it seems like one’s degree of trust in the government dictates which Maybe you believe is true. Since no one at HHS is talking to me – despite multiple attempts on my part – I can’t speculate about how they see the Maybes.
What I do know with absolute certainty is that our entire environment has been poisoned by mistrust, fear and disrespect. The actions of HHS in the last month have shocked even the most moderate of advocates. We need a sincere and meaningful demonstration by HHS that they truly understand our concerns. If we cannot stop the IOM contract, then we will expect and demand that HHS adhere to everything they promised in the listserv announcement, and more.
As I have shown, there is more than enough distrust, suspicion, fear and misgivings to go around. All sides have contributed to spilling that gasoline. But HHS is the one who lit the match and threw it on the spill. HHS is the one who needs to put out the fire. If someone at HHS steps up to do that, advocates have to be willing to let the fire go out as long as there is demonstrable transparency, accountability and commitment to get this right. Maybe that will allow us to step back from the terrible precipice on which we stand.