Many members of the community have called out HHS for legal violations over the years, such as Dr. Mary Ann Fletcher and Ms. Eileen Holderman confronting Dr. Nancy Lee, DFO of CFSAC, for her attempted intimidation of CFSAC members by threatening to evict them from the committee for voicing their opinion. This was well documented by Jennie Spotila on her blog. Ms. Spotila also uncovered other FACA violations. I successfully sued HHS and NIH in federal court for violating FOIA and the Judge found the agencies’ conduct to be unreasonable to a degree that led him to order both agencies to pay all of my attorneys’ fees, more than $139,000. The award of attorneys’ fees is by no means a given in FOIA cases; it requires a high level of unreasonableness on the government’s part. I explained why HHS again violated FACA regarding CFSAC’s January 2015 comments to the P2P here, here and here. Many advocates have protested these and other legal violations of HHS in formal complaints and public testimony throughout decades.
It’s almost too obvious to make the point, but the government, in our case, HHS, has a mandate to follow the law. The rules exist for important reasons, in the case of FACA, to protect the integrity of the process through transparency and accountability. Similarly, FOIA is meant to facilitate open government. Those are important constructs that, together with other aspects of our legal system, build the foundation of a principled society. They are not just technicalities that can be shoved aside or overlooked whenever it is convenient for the government. To the contrary, they represent rights of the people that are enforceable in court. It seems what we are seeing is a desensitization to legal violations due to the sheer numbers of times HHS has been violating the law, all the while acting as if nothing was wrong. But it is the duty of a citizen, especially an advocate, not to let that cloud one’s judgment and not to let HHS get away with it. A violation is a violation regardless of how many times it has been committed.
However, a few members of our community prefer to turn a blind eye when it comes to HHS’s unlawful conduct. It is possibly understandable, though not excusable, that HHS would downplay the seriousness of its actions or even misstate the law to the public, as Dr. Lee, CFSAC’s DFO, did again just last month at the latest CFSAC meeting in describing HHS’s disclosure obligations under FACA. But why would patients do it?
For a few, the answer seems to be that they are taken aback when they realize that they participated in a process that was unlawful on the part of HHS, such as a FACA violation. Instead of directing their dismay over these violations at HHS, they turn it against those of us who are holding the agency accountable. When somebody has been passionately invested in a project by volunteering a lot of time and effort, it may be natural for the initial knee-jerk reaction to be pushing back upon hearing of HHS’s misconduct. Cognitive dissonance can be quite compelling. And, of course, HHS is relentless in its denial of its violations, never mind that they are obvious. After decades of neglect and abuse by HHS, wanting to believe that things are finally different—that HHS turned over a new leaf and now has the best interest of ME patients in mind—can become a desperate need reinforcing the narrative that nothing is wrong with HHS’s actions. It’s tough to admit to oneself and others that things were not above board when one was led to believe by HHS that they were on sound legal footing and one relied on that. I get that. However, it is asking a bit much of the community to overlook these serious transgressions by HHS just to allow those who were part of the tainted process to retain their comfort level and alleviate any potential guilt. Once a well-reasoned and well-supported analysis of the law has been presented outlining the legal violations by HHS, there is no longer any plausible deniability.
Nevertheless, a shooting of the messenger, which does occur at times when accountability is demanded from HHS for the agency’s illegal actions, is crossing a line. Not only do a few patients and/or advocates praise HHS despite all its egregious violations, make excuses for the agency and presumptuously and patronizingly apologize to the agency or its component agencies for other patients, they also misstate the law publicly to the community thereby enabling HHS to continue their unlawful pattern. They even go as far as to, often publicly, accuse those who try to hold HHS accountable of being conspiracy theorists, making unsupported assumptions, creating unnecessary drama, reporting recklessly and manipulating the community. They question the value of insisting on HHS’s adherence to the law and instead stress the amount of work that went into an HHS project, as if that somehow offsets the violations. They also deny established facts.
This hurts all patients. It is also a double whammy for the many in the community for whom compliance with the law is not negotiable; they witness HHS break the law time and time again and, when they confront the agency, they face unsupportable accusations by others in the community who enabled, condoned, or acquiesced in, the HHS violations and/or are either not familiar with the law or choose to overlook legal violations, seemingly in the interest of a purported greater good.
The greater-good argument is, of course, a slippery slope. To what degree are we supposed to tolerate legal violations? When do they cross over to becoming inexcusable? Who gets to decide? The law exists to remove those grey zones. In our society, the duty to follow the law is not optional nor is it permissible to follow it selectively.
One person has even publicly suggested that it is improper for an advocate who chooses not to participate in a particular process to later criticize such a process. This is absurd. Usually, the reason the advocate chose not to participate in the process (assuming he or she was given an opportunity to do so) is that the process itself was flawed or tainted. Participating would be tantamount to endorsing the flawed process, such as the farcical jury model of the P2P. Only through the looking glass would this lack of participation force silent acceptance on what ultimately turns out to be not only a tainted, but an unlawful process.
It is important in this context that, once a legal violation has been explained in painstaking detail and the facts are not at all in question and are, in actuality, admitted or otherwise proven—as is the case with the FACA violations that occurred with respect to the January 2015 CFSAC recommendation—the accusation that he who uncovers HHS’s unlawful conduct made misrepresentations of the facts or the law can no longer be claimed to be a negligent attack on that person’s reputation; it’s quite intentional.
This is one of those moments when the M.E. community defines itself. Does it want to insist on HHS’s adherence to the law or condone the agency’s manifest legal violations? Some advocates have been fighting, often at great personal cost, to compel legal compliance by HHS. Others have enabled HHS, actively or indirectly, to disregard the law. Asserting that it is important to “work with” HHS or that legal infringements should be overlooked so as to achieve a purported beneficial end result, they downplay the seriousness of, or even defend, activities or processes that are tainted by unlawful HHS conduct. They also, instead of taking issue with HHS’s unlawful pattern, fault those who seek to hold HHS accountable for its legal violations.
It is crucial that those who stand for accountability of HHS under the law and integrity of the governmental process continue to insist on HHS’s compliance with the law. Pursuing legal violations by HHS gives the community unparalleled leverage in its fight against the agency’s recalcitrance, abuse, contempt, neglect, obstruction, distortions, misinformation and failure to fund. Let’s remain firm in our conviction that going along with HHS’s unlawful methods in order to get along is out of the question for our community.
Thoughts About M.E. 
I applaud you for your conviction and tenacity. Thank you for standing up for our community, we seriously need all the help we can get! Don’t let a few naysayers get you down, they are so loud because there are so few. Keep up the fight, there’s way too much non-accountability in the government in general. No one takes responsibility for screwing up–and it goes clear to the top!! Thank you for all you do 😃.
Remaining firm with you on this, Jeannette!!–“going along with HHS’s unlawful methods in order to get along is out of the question for our community.” We see through the games, manipulations, B.S. and UNlawfulness. There is no excuse for this blatant disregard in targetting the M.E. community–and breaking the government’s own laws to do so.
TPTB are always on the look-out for those that can be manipulated and used for their purposes–they know who to play, how and when.
This Ted Talks–Astroturfing–Fake Grass Roots comes to mind
–hat tip to Anne LiConti for this link.
Thank you so much for going the distance for the M.E. community–your efforts are so very much appreciated.
Ditto
I’m sorry to hear that you have been under attack for your hard work to keep the HHS in compliance with the law. I definitely feel they need to be held accountable. After decades of neglect, we seem to be too willing to accept the bone they are trying to throw us. I’d prefer they throw us some steak and do so legally.
As someone who is too sick to do any of this, I appreciate your work all that much more. I think there are far too many who are too sick to be involved or keep up. Thank you for doing so on my behalf, as well as others who are in my situation.
Jeanette, as always, I too am very grateful for your advocacy. Thank you. You continue to inspire me and your insights and activism make me wish that I had attended law school. 🙂
Thank-you again for another important and clearly-stated post. I appreciate so much your thorough examination of all aspects of the government’s illegal activities regarding M.E., and their various ramifications in the M.E. patient community. I realize that this is time- and energy-consuming work, and I hope you know how grateful we are to have you fighting for our rights. I hope you will be able to keep up this good work. We who are too sick to do this ourselves thank you for your invaluable help and tireless work on behalf of us all.
Reblogged this on The Other Side Of The Stretcher.
We all know the history. “Going along to get along” has only hurt, not helped, patients.
This is OUR government. It is our right to ask for and expect compliance with the law.
Furthermore, we all have a right to examine any government process whose outcome will affect our welfare, whether or not we are direct participants. America is kinda cool that way. 🙂
Thanks again, Jeannette. I admire and appreciate your unwavering integrity.
Thank you, Jeannette!
We need to point out HHS’ constant malfeasance. Lies and more lies.
What has the U.S. government agency done for ME patients in the past thirty years? NOTHING.
The only possible way to enable change is by recognizing and sharing awareness of the neglect and targeted malfeasance.
This is what a true ME advocate strives for.
It is a pity that legal constraints limit what can be said, but thank you for having a go, Jeannette. In my mind, these people that purport to be on our side and urge cooperation with the HHS for their own benefit have done more to harm patients than any other agency.
There are agencies to whom we can make complaints. Inspector General is one. I can imagine people wondering what the Inspector General would do if anything. I look at this as a process. Document the areas of malfeasance. Be specific. Best to have coordinated attack but if people cannot agree who is to do what, repeated complaints about the same issue won’t do any harm, A copy should be sent to your rep. I believe it is now incumbent on us, where we are able, to make sure that the government behaves. HHS has been breaking laws, ignoring regulations, sidestepping its own rules for far too long. We all know what our limitations are..but we can keep chipping away. I am not a patient patient.
Nothing is ever won without pressure and a lot of it, not Social Security, Medicare, civil rights legislation, environmental laws, women’s rights, gay and lesbian rights, nothing. And so, here we are, dealing with the same inaction and lack of funding for research as ever.
So, why not expose HHS? Why not hold their feet to the fire, so to speak? It’s a governmental agency that’s supposed to support the public and provide “health and human services.” And if they aren’t doing it, then people have to pressure them.
If we could all go to D.C. and have a big sit-in, like ACT-UP did, we’d do it. If we could do massive civil disobedience like the Civil Rights Movement did, we’d do it.
We have to use the tools we have and pressure HHS and NIH to take this disease seriously and fund research and a lot more.
Jeannette! Here you are again speaking up for all of us! And someone dares take a stand with HHS? Every time I see one of your posts, I’m so proud of you! And then I worry for your health as you too are a patient! Fight the good fight, but also count your spoons! Thank you for all you do! ♥
Great blog post Jeannette. It is unbelievable that supposed patients and patient advocates woyld support actions and policies which are harmful to the interests of those with ME. Makes me wonder if they even have ME. I guess some people are easily manipulated by the likes of the NIH and HHS and some are just easily bought …or maybe a combination of the two. I really do not have much faith that anything good for ME patients will come out of anything from the NIH or the HHS until a full house cleaning is done of the rot which is preventing them from carrying out their mandated mission. Only the current administration and congress can do that. So I think they need to be the primary advocacy targets. I am so thankful that you are working to keep them legally accountable. This then becomes more evidence to present to the policy and law makers.
Thank you, Jeannette. This is an important moment. This is a moment when the community of M.E. patients and those who care about us need to state our positions clearly. Will we continue to accept public lip service coordinated with less public abuse from HHS? Will we continue to support those groups who are enabling and encouraging HHS to mistreat M.E.. patients, often breaking laws in doing so? Or will we stand together and say NO MORE! We will no longer accept words without actions. We will demand that any advocates and patient organizations which seek our support actually step out and advocate on behalf of patients. No longer will we allow groups to pretend to represent us while selling out our interests in order for them and their organizations to receive a “seat at the government’s table.”
It should go without saying that M.E. patients will not support organizations which accept and encourage government agencies to break laws in dealing with M.E. and M.E. patients. But apparently not. These fake “advocates” and phony “patient” organizations have chosen to confuse patients with double-talk and lies. Let us make clear that we will no longer accept their lies. We will no longer support those who do not honestly represent us.
And we will direct our anger where it belongs—at the guilty government agencies and the individuals and organizations which support them. We will no longer shoot honest messengers such as Jeannette; instead, we will give them the gratitude and honor they deserve.
Thank you, Jeannette. I am grateful to you for all you do for all of us.
You are our angel! Thank you is too simple and short, but it says it all. I am reading “Osler’s Web” by Hillary Johnson. Amazon didn’t have it, but I got it on http://www.alibris.com. It begins in early 1980’s and besides all the chronological reporting by this amazing journalist, she also reports on all the prejudice and lies perpetrated by the HHS and the different departments, basically the CDC and the others under NIH. It is factual and also extremely disturbing to read about the negative attitudes about ME (also known at that time as: chronic mono; chronic EBV; etc.). So, this habit of lying, refusing to release documents and results of research and lab testing, and breaking the law by denying release under FOIA, is an old story. I recommend “Osler’s Web” highly to fully understand why the discrimination and disbelief of the medical community and our government towards ME is so deep. They were all brainwashed by egotistical and greedy professionals.
Please keep up the good work. We need real advocates, not fakes with their own agendas.
Thank you, Jeannette, for your steady disclosure of the unlawful acts of NIH und HHS – and the damaging support of these agencies’s work by some people in the ME community. Noone but you could expose the violations of the law with such an expertise like yours. Dividing the ME community is one of the perfidious strategies of the powers that be, and too many in the ME community don’t realize this. Being in the cahoots with government agencies who have everything in mind but helping those with ME or disclosing the root cause(s) of ME is tantamount to directly fighting the very interests of people with ME. And this not only affects the ME community in the US but all over the world.
It is an illusion to believe that these agencies will ever work in our best interest. But they are certainly good in making some people believe they did. I’m sure they pretend to do so just to put a further layer of covering up over the real cause(s) of ME and its possible treatment.
I can not imagine any outcome or result that would justify infringement on the law. People who participate in scams like that most of them have something to gain themselves. There are different kind of advocates, those like Jeannette who fight for ME patients and the community and then there are those that are only in it for personal gain and fame. I would not call these people advocates. Their behavior and actions are an embarrassment and do a disservice to the community.
I must admitted I was lulled asleep in the thought ‘oh HHS, business as usual’. For the last 20 years I haven’t seen anything positive come from them. We are so used to them behaving the way they do and getting away with it(this bothers me the most), that we don’t even blink our eyes anymore when another legal violation happens. Until someone like you comes along, gives us a good shake and tells us it’s not okay, no matter what other ‘advocates’ have been feeding us.
There have been a few who have been trying to hold them accountable for their actions, you already mentioned them in your posting. What frustrates me to no end is that the puck stops there. We do not get any further than protesting their behavior, I imagine them the laughing and nodding behind the scenes and knowing that nothing will happen. How is this possible? Why are no further steps or actions taken?
It can’t be so that a government office brakes the law year after year and everyone stands by, knows about it but nothing happens? What’s wrong with this picture?
We need to dig deeper, get a hold on them like a pit bull or a terrier and we will not let go until we get the results that we need. The legal results.
The first step will need to be to find the office where we can file complaints. Holding them accountable face to face obviously didn’t work. There must be an office that controls these government agencies, right?
I think the government bullies us because they believe we are too sick and weak to put up much of a fight. And of course a lot of it is trying to hide a huge problem that requires a serious response to solve. Thank you for fighting for us!
It seems like folks haven’t learned one of the most basic things in advocacy. That is, if you do things the way you’ve always done, you will get what you have always gotten (which for the ME community is bupkis).
Thanks for taking an educated stand!
“Unless someone like you cares a whole awful lot,
Nothing is going to get better. It’s not.”
– Dr. Seuss
Thank you, Jeannette, for caring a whole awful lot.
An important article the Washington Post about seriously ill Whitney Davis, whose father, Ron Davis, a Stanford scientist is going to intensively study our disease.
https://www.washingtonpost.com/national/health-science/with-his-son-terribly-ill-a-top-scientist-takes-on-chronic-fatigue-syndrome/2015/10/05/c5d6189c-4041-11e5-8d45-d815146f81fa_story.html
Also, here is the link to the article in The Atlantic: http://www.theatlantic.com/health/archive/2015/10/chronic-fatigue-patients-push-for-an-elusive-cure/409534/
Hi Jeanette,
Could you explain the relationship between the NIH and HHS? I am wondering how much the recent attempt to repair bridges coming from the NIH should be viewed in light of what you have written about HHS. Is it a case of one hand not knowing what the other is doing, or is there reason to see their overtures in a more cynical light?
HI Aaron, NIH is one of the key component agencies within HHS. Hope this helps.