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.


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31 Responses to Trust

  1. Anne Boyd says:

    When I was writing my email to HHS protesting the IOM contract process, by very good timing the FDA report “The Voice of the Patient: Chronic Fatigue Syndrome and Myalgic Encephalomyelitis” had just landed in my in-box. I included the full text of the FDA email and the link to the report in my e-mail to HHS. I pointed out that the FDA had managed to make patients and other stakeholders feel included, heard, and respected, and that the patient community was so grateful for this rare treatment that the FDA received thank-you cards from the community after the meeting was webcast.

    I suggested that it was within the power of HHS to have a similar relationship with the community if only they could manage to adopt an open and inclusive attitude toward the patient community and demonstrate that in policy and actions, and that they might enjoy getting thank-you cards instead of indignant emails.

    • Jennie Spotila says:

      I agree with you 100%, Anne. I didn’t think I had room to cover that in this post, but I’m already planning a follow up on FDA as Exhibit A. I’m very glad you mentioned it in your email to HHS.

  2. Nita Thatcher says:

    I shared your post with my US Senator, Sherrod Brown. I asked for his help and asked him to contact HHS. I don’t know if he will help, but I thought it worth a try.

    Thank you for putting the issue in easy to understand words …..


  3. Julia Hugo Rachel says:

    Trust has nothing to do with decisions made by a governmental entity. Their decisions have to pass a government protocol. Although this is an emotional subject for patients, this is not an emotional subject for governmental agencies who have way too much on their plate to deal with. The reasons for the HHS decision were based on many factors. If we listen to all of the advocacy messages over the past 30 years, these messages have not been cohesive. This is a common issue when you have a divide and conquer mentality and when grass root advocacy groups have diverse agendas. If HHS is not making decisions that CFS patients and doctors agree with; it is up to CFS patients to unite and take political action. Political action does not just include going to Congress, the CDC or any other governmental agency. If an agency stalls for even a year, it is a sign that advocacy needs to take a different route. What that route looks like, would be known to political insiders. CFS has lacked a major national political campaign to further its’ cause. Perhaps folks will band together to make this happen in the next election cycle.

  4. Kathy says:

    This is a very nice summary of the whole fiasco, Jenny. You have done an excellent job of staying on top of all this and communicating it so clearly. Thank you!

    I just hope HHS does not have an agenda that they know the CFS/ME community will not like.

  5. Robert Morley says:

    I wonder if maybe what’s needed here, at least as a start, is an intermediary: someone who’s a patient but not an advocate, or who isn’t a patient but also isn’t an employee of HHS (or perhaps someone new, who doesn’t yet have the baggage). Whatever the case, it’s very clear to me that communication, or the lack thereof, is the biggest single problem in this situation.

    • Jennie Spotila says:

      I agree that a mediator is desperately needed. But I’m not confident that we could actually get all the parties to agree to that, even if we found one.

  6. Rebecca says:

    Who is the author of the article “Background” to which you link?

  7. Pingback: HHS Strategic Plan, Goal number 4? Not implemented | Speak Up About ME

  8. Firestormm says:

    @Julia Hugo Rachel
    Good comment Julia. Nicely articulated and I concur, but I wonder if it is ever likely our community – with the history of this/these disease/s – will ever come together in such a way that is not ambiguous.

    • Jennie Spotila says:

      I have seen the actual letter Jeannette is talking about. It does not ask the signatories to change their position. It asks IF they have changed their minds after the IOM announcement. I do not know what the Association’s position is at this point.

      That said, the letter could have been more neutrally worded than it is. And it’s not surprising that one or more of the 35 signatories would share the letter with others given how volatile the situation is right now.

  9. Sasha says:

    Thanks, Jennie. That’s an important distinction.

  10. Sasha says:

    Jennie, I’ve reposted your response and a linkback on Phoenix Rising where there’s a thread on this – I hope that’s OK:

  11. Andrew says:

    @Julia Hugo Rachel
    So you believe the complete unwillingness of the HHS and most government organisations around the world to listen, unite and empower the ME and CFS communites is because such groups are badly organised and lack a coherent voice.

    You might be right, but it begs the question, how do you suggest such groups to organise in a more coherent way. Are there any other recent examples of other groups that are relevant that would provide a framework to go on?

  12. Justin Reilly says:

    @Jennie Spotila I’m curious if CAA and/or Dr. Vernon have a financial interest in the IOM contract as Jeanette states. Can you comment?

    I would also like to have the letter be made public so we can all see what was said and resolve this difference in understanding, but I suppose that CAA should really produce it rather than you since they sent it.

    • Jennie Spotila says:

      It’s up to the Association to release the letter. I do not have their permission to share it with anyone.

      To my knowledge, the Association has no financial interest in the IOM contract for the ME/CFS definition. If someone has proof to the contrary, they should produce it.

      Suzanne is serving on the Gulf War Illness definition panel. I do not know if IOM compensates panelists, although I assume they reimburse travel expenses, etc.

      The IOM Contract for the ME/CFS definition is between HHS and IOM. I am not aware of any other party to that arrangement. Thus far, HHS has refused to release the SOW to anyone, and many of us have asked.

  13. Justin Reilly says:

    It is interesting that CAA has been blogging on all of the developments in this controversy, but has curiously not posted/announced that the 35 luminaries wrote a protest letter. In their extensive coverage, I think they mentioned once in passing that some patients didnt like the idea of an IOM contract. They also have still failed to disclose whether the organization and/or Vernon has some substantial financial interest in the awarding of the contract.

  14. Rebecca Fromdaforums says:

    The CAA does have a financial interest in the IOM contract in the sense that a broader case definition of CFS would provide CAA a larger base of donors.

    The Fukuda definition applies to ~ one million Americans, the Reeves-Vernon definition (“operationalized” Fukuda) to about four million. If IOM redefines CFS to capture millions more Americans, CAA will represent a much larger base of “patients” from whom it can collect money.

    I agree CAA should release the letter.

  15. The underlying problem that I see is that heterosexual, white people are the top of the political food chain. They don’t really have any idea what political oppression is, and don’t have much experience fighting for their civil rights.

    Sadly, most CFSers’ (because they are heterosexual and white) don’t even realize that they’re oppressed and keep trying to *work with* the government as if it’s something logical, rationale, and humane.

    Decade-after-decade, CFSers’ herd-around following government-funded research, as though the same government that MAN-ufactured these illnesses is actually going to help to solve it with their “science.”

    Very naively, CFS & ME patients keep turning back to government (in prim and proper fashion) for help, when really the problem needs to be taken-to-the-streets!

    Civil disobedience is imperative. We are not dealing with nice, rationale, people —> IT WAS CREATED ILLOGICAL ON PURPOSE.



  16. Ess says:

    Was just reading on this website (link below)–altho it is dated as 2010 with the research then and referring to XMRV–and XMRV being now passe ??–as part of the investigations, researchers (2013) are still checking into XMRV with a view to being aware of cross-contamination.

    Many of the ME/CFS sufferers in this blog (link below) write about what it is like ‘living’ with this horrid illness. I think sometimes we can be too polite to explain fully to others what exactly this horrid chronic ongoing disease is like to ‘live’ with, and we don’t want to complain . . . we are trying our best to cope! The ME/CFS sufferers in this post below say it LOUD and clear.

    And the comments relating to ‘CANCER’ resound with me as well–because as soon as that ‘C’ word is ‘out’ the world around ‘knows’ of the suffering involved, and the SEVERITY of the/’that’ disease. It is good news and yet, comparatively bizarre, that many many cancer patients are cured or are in remission — able to live an active daily life–participating/LIVING FULLY in ALL activities and facets of daily living and living life in general/at large with NO limitations, e.g. able to work and go on vacations, etc.–AND feeling well on a daily basis.

    Case in point, an acquaintance was treated for cancer some years ago–after treatment, this person continues to LIVE life FULLY–working full-time, getting out of the house spontaneously for errands or shopping, etc. AND travels often near and far for business and vacation, has pets and CAN have pets with being able to look after them on a daily basis; is ‘able’ to shower every day–and is able to do all the vacuuming, housework and laundry, cook meals–socialize, etc. etc.–everything that the collective ‘we’, like others, took/take for granted in living life . . . until–as in our case, we were stricken with ME/CFS–GONE is ‘normal/healthy’ life as we knew it–stolen from us–in an endless vacuum of time and illness!

    Soooo, conversely as described above as a person living life FULLY after cancer, this is NOT remotely how I am/we are ‘able’ to our lives with ‘JUST having’ ME/CFS. Makes NO sense at all–does it . . . !!!!!

    WE suffer terribly with ME/CFS with the harsh restrictions this disease imposes on us, and feeling ILL on a daily basis; symptoms ‘up’ and feeling WORSE when we attempt to push a little more–AND every ‘little’ thing we do IS a push!!! I usually ‘get out of the house’ once a week, most often for an appointment; and I am DONE before I ever leave the house!!!!! Little wonder about PEM!!! Although I am NOT a scientist–PEM makes logical sense to me in conjunction with ME/CFS as we know the disease/symptoms well ourselves.

    MOST unfortunate for us, ME/CFS has been treated/MIStreated largely as a hidden disease–locked away, so to speak–hidden in a closet. We DO NOT get to live a full life and are essentially ‘locked away/hidden’ in the house with ME/CFS–again always feeling terribly unwell. We ‘live’ a ‘life’ of ‘isolation’ and ‘severe illness’; ‘they’ haven’t bothered with us–AND worse–have ‘stimatized’ the disease and trivialized the disease for ‘whatever’ political reason/s–and NOW an epidemic–worldwide–that ‘they’ are still trying to HIDE / keep locked in that closet / our house and cover up–in not wanting to speak the truth and stand up to the resultant consequences of what years and years of their irresponsible actions and inactions have done regarding this horrid chronic disease.

    The RIDICULOUS trivializing name of CFS only serves to diminish the harsh reality of this debilitating disease for those of us trying to cope with this (live) day after day—YEAR AFTER YEAR. The name/label sounds dismissive as in ‘take a nap’ and you’ll be fine; I am tired too–snap out of it; stop complaining–others in good health completely do NOT get what this ME/CFS is all about becauses of the non-descript name. There is very often an unjust response to ‘us’ with the trivialization of this SERIOUS illness as ‘labelled’ by the ‘powers that have held the ‘reins’–or is that ‘reigns’ supreme.

    We can never give up!!! We need answers. This whole dark cloud and stigma meant to ‘purposely’ surround ME/CFS is tragically unjust, cruel and inhumane in the arena of human life and needs to be EXPOSED. LET’s effect a change towards living life ‘beyond’ ME/CFS!!!

  17. floydguy says:

    @Rebecca Fromdaforums

    This already seems to be happening as Suzanne Vernon is on the IOM Committee for GWI. Fred Friedberg is joining her. The CAA and IACFS seem to be effective platforms for career development.

  18. Eco says:

    As I have stated on the PR site and Tom Hennessy alluded to concerning special interest and lobbyists. I had a close relative that served at the highest level of government in 8 years of a former Democratic administration and was a lobbyist on the ‘Hill’ for many years. I posted why lobbying will not work. I have seen my relative pick up a phone to call in a ‘favor’ for a friend or a lobbyist. The response was immediate regardless if the other person opposed it or whether he was head of some other department. That is how fast things can happen in Washington. The CFSAC is nothing but an HSS dog and pony show for the patients.

    1. We have seen the reults of the IOM criteria with total disregard to veteran organizations which have a poweful lobbying group. Science didn’t matter.

    2. The fix is in, this is why CAA is trying to get the ME/CFS clinicians/researchers to rescind their opposition.

    3. IOM which is part of the medical establishment has shown over the last 3 decades total disdain and marginalization of this illness. Do you really think they see the light.

    4.CAA is violation of Form99 regulations governing non-profits by not disclosing any conflict of interest with regards to this contract.

    Bottom line: the health,disability and the APA have spent hundreds of millions of dollars lobbying to keep this illness psycho-somatic. That is the line that going down behind the scenes.

    The History
    We have seen the result of what the diagnotic criteria and treatment guide on another patient community, The veterans of the Gulf War. Treatment guide by the IOM committee notes that the best available evidence from studies of treatments for CMI and related health conditions demonstrates that veterans who have CMI may benefit from such medications as selective serotonin reuptake inhibitors and serotonin norepinephrine reuptake inhibitors, and from cognitive behavioral therapy, which has been shown to reduce symptoms. Other interventions and approaches hold promise for treating CMI but lack robust scientific evidence of their effectiveness. For this reason, the VA shouldfund and conduct ?studies of interventions, such as biofeedback, acupuncture, St. John’s wort, aerobic exercise, motivational interviewing,?and multimodal therapies!

    This treatment option was in direct contrast to the Congressional mandated Research Advisory Committee even though the IOM stated that these men and women were exposed to biological and chemical toxins, depleted uranium, particulate matter and infectious agents and the IOM acknowledge them as contributors, and it found it found most compelling the scientific evidence that the prime culprits were neurotoxins — in overused insecticides, experimental anti-nerve gas pre-treatment pills, and sarin plumes from the Air Force’s bombing of an Iraqi weapons plant!

    It is ludicrious that a panel of scientists with absolutely no background nor experience with the ME/CFS patient community, has shown absolutely no prior interest in this community to date, has never treated ME/CFS patients and has shown a complete lack if not disdain and marginalization over the past decades for ME/CFS patients. It is devoid of common sense that this panel has more expertise than the clinicians/researchers that have been using the CCC and ICC primer over the last decade and who oppose this plan.

    The CAA only supports a very small portion of the ME patient community and does not speak on behalf of the majority of 17 million patients worldwide. Over the past two decades, it has not produced the results needed for our community.

    The question is whether the CAA or any of the associates will benefit financially from this contract…a definite conflict of interest? I would rather CAA focus on increasing your rating among charitable organizations which tends to belie the dysfunctional nature of this organization.

    Suzanne D. Vernon of the CAA should expressly convery to the patient community if she is receiving any renumertion from the IOM contract and based on any compensation proceeded to discourage ME/CFS clinicians/researchers from withdrawing their letter in oppostion. If so, this a clear breach of IRS Form99 conflict of interest on behalf of a non-profit.

    • Jennie Spotila says:

      I let Eco’s comment go through, but let me remind everyone about my comment policies. Accusing an organization of a conflict of interest or of violating IRS regulations is very serious. Accusations should be accompanied by some evidence, or else it is possible they are conjecture, rumor or worse. I will not allow comments on this site that stray over that line.

  19. Eco says:

    @Jennie Spotila
    This was stated by a comment above by Justin Reilly. Any statement that I make can be backed up with Statistics, audits, Grading criteria by Charitable watchdog organizations , IRS regs and Case Law. Accountability in any organization is based on performance and effectiveness of that organization to manage funds in the most effecient, trustworthy and effective manner possible so that the majority of funds designated for research by donors are used for that purpose. Charitable watchdog organizations have rated CAA, less than stellar over the years.

  20. Justin Reilly says:

    Regarding this post, I have not been live to any of the meetings, so I can’t really say, but I have a feeling the advocates aggressive stances do not justify any distrust by HHS employees. That agency has been tormenting us for decades.

    We don’t need to apologize for being loud and critical, in fact, Id like to see it louder and more critical generally. (Of course I feel a little bad for the HHS newbies to ME who haven’t done much wrong personally, but have been assigned to the CFS beat; we should try to keep this in mind, but when in doubt, I say, err on the side of loud and critical, too bad if they nonsensically “distrust” us).

  21. Sue Jackson says:

    Excellent summary, as always, Jennie – you have such a talent for boiling things down to the essentials! I especially like the way you tried to explain here how and why the HHS mistrust the patient community. This is a two-way street and both sides will have to work together and trust the other in order for anything to get accomplished. And I hate that there even ARE sides. Honestly, all of this bitterness, anger, and fighting just wear me out and use up my limited energy. I do my best to stay out of the middle of it mostly, but we will never get anywhere in having ME/CFS understood and accepted by the mainstream medical community unless we can find a way to work cooperatively and respectfully with HHS.

    Thanks as always for your very thoughtful and complete analysis –


    Live with CFS

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