The Government Attitude Needed

twofaceGovernment/advocate interactions frequently happen on a public stage, where everyone is rightly careful about what they say. Sometimes, though, we can get access to behind the scenes communication. In emails that the authors probably believed would remain private, we can learn what those people really think about something – and it is not a pretty picture.

I have a story like this for you today. Two short emails about ME advocates capture a dismissive, insulting attitude from one person, and a respectful attitude from another. Both of the emails in question were sent by individuals no longer working on ME/CFS, but in light of the Shorter fiasco it is clear that government attitudes are still problematic.

Back in March 2015, I discovered that the NIH Office of Disease Prevention had mishandled public comment on the P2P ME/CFS report. Many comments submitted by advocates and organizations had not been sent to the Panel members. Among the many missing comments was a lengthy document from the CFS Advisory Committee. That document was prepared as part of CFSAC’s official function, and at government expense (to say nothing of the huge amount of time invested by the work group members).

But my discovery meant that this 20 page report (and the comments of dozens of others) was never sent to the Panel by the NIH Office of Disease Prevention. NIH admitted the error, and was forced to delay publication of the final version of the P2P report. Once the report was finally published, I remained very curious about how all of this was handled internally. In October 2015, I filed a FOIA request for communications among the people involved in the P2P meeting. Almost a year later, I received a response. And buried within all the documents were two emails about me.

Here’s what went down: when I discovered NIH’s mishandling of public comments, I emailed the authors of the CFSAC document to notify them of the problem and promised to keep them informed. I thought it was appropriate to copy then-Designated Federal Officer Barbara James.

It turns out that Ms. James forwarded my email to Dr. Susan Maier, who was then the ex officio representative of NIH on CFSAC. Ms. James added personal commentary, saying:

FYI. Don’t they have anything better to do than file FACA and FOIA requests? (emphasis added)

That one sentence embodies everything that is wrong with the way some government employees view ME advocates. It is dismissive and insulting. It demeans legitimate advocacy efforts. It ignores the fact that one of the few ways we can hold the government accountable is through investigating and exposing government failures. This is also one of the baldest examples of ableism that I have seen in a government email.

In addition to insulting me, Ms. James failed to acknowledge that my FOIA request had uncovered that CFSAC’s comments had been lost. My discovery helped her do her job, because it was her responsibility as DFO to submit those comments to NIH. But instead, Ms. James could only complain that I had nothing better to do.

Let me be clear: The only reason I’m doing any advocacy in the first place is because my government has completely and utterly failed to adequately address the ME crisis. I would much rather be working or raising kids or doing the thousands of other things I am unlikely to ever be able to do. Advocacy work is important, and believe me, I don’t do it for entertainment or lack of other things I want to do. Like many others, I do advocacy at great personal cost and sacrifice.

Ms. James’s comment is an example of a negative mindset about people with ME: we are a nuisance; we complain too much; we’re crazy; we’re demanding; we have small lives with nothing better to do.

That is an attitude we do not need. It is an attitude that interferes with the government’s public health mission and that impedes our ability to succeed in advocacy. ME advocates can point to decades of dismissal and disdain by government employees. We can unroll a long laundry list of examples that were not helpful or constructive, and that sometimes cross the line into outright prejudice and stereotypes.

It’s not the end of the story, though, because Dr. Maier replied to Ms. James. Dr. Maier did not always endear herself to the ME community, but this email was completely appropriate and accurate:

Thanks Barbara. They are concerned that their voices are not being heard. I understand. (emphasis added)

THIS is the attitude we need. Dr. Maier simply acknowledged that we have legitimate grounds to fear that our voices are not being heard. That’s it. She didn’t go any further than extending a little human decency and empathy, but it makes a difference to me to know that she did so.

Emails and attitudes like Ms. James’s are the norm for people with ME. We get that kind of thing from our healthcare providers, our social circles, and our government. Ms. James retired from HHS, but attitudes like this remain.

Dr. Maier is also no longer working with CFSAC, but the attitude in her email is exactly what we need from government employees. We need to be heard as contributors to solving the ME crisis. Our input is valuable, and we are worthy of respect. Even when we use adversarial tactics, it’s usually not personal. We’re performing a necessary function in the system, just as they are.

These conflicting attitudes remain relevant today. The recent invitation of Dr. Shorter to NIH was not only a major blunder, but also exposed dangerous thinking among some at NIH. The replies from Dr. Koroshetz and the Trans-NIH ME/CFS Working Group were respectful but missed part of the reasoning for our protests. Dr. Shorter’s talk still went ahead as scheduled.

But on the other hand, the teleconferences with the community have given us closer contact with NIH officials than I can recall us ever having had before. Several NIH scientists attended the IACFS/ME meeting and gave presentations. Dr. Vicky Whittemore asked CFSAC to make recommendations on how agencies can better engage the ME/CFS community in setting priorities for research.* I have encountered several NIH employees who have been both respectful and incredibly responsive.

Government agencies may appear monolithic, but they are not. The offensive, callous attitude embodied in Ms. James’s email about me (as well as NIH’s invitation to Dr. Shorter) is unwelcome and unproductive. Given the government’s history on ME, it is natural to expect all government employees to treat us badly.

But governments are made up of people, and people are not identical. Dr. Maier’s email to Ms. James is one example of empathy and understanding. Long-time advocates will recall Dr. Wanda Jones, who was respected and appreciated by the ME community. Dr. Whittemore gives every indication of following in her footsteps.

The emails exchanged by Ms. James and Dr. Maier use a total of four sentences, but reveal much about the kinds of attitudes we do and do not need from government employees. We need less disparagement and less ableism. We need more empathy and more respect.

People with ME will be best served when everyone comes together as equals to address this crisis. Bad attitudes will always hinder progress.


*Full disclosure: I am serving on the CFSAC’s working group on this topic.

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17 Responses to The Government Attitude Needed

  1. The bad attitudes are also emblematic of the response of healthy people to people with our ‘fake’ illness.

    They should try living on limited income, with no hope of being able to go back to the workforce, and with the continual fear that medical benefits (laughable as they are) will be removed.

    They might also try doing their jobs. We are not beggars! We are ill, our government does research on illnesses, and we are not getting anywhere near our share.

    I can’t believe they would have let almost any other illness go thirty years without research. (I also can’t believe I got this, so my beliefs need work.)

    Thanks for making those FOIA requests, and making sure things meant for the group actually reached the group. I’m sure it cost you far more than you will ever admit – and we can’t offer anything but thanks.

  2. Rivka says:

    Thank you!!

  3. Jenni says:

    Thank you for your advocacy work. It is appreciated.

    I looked at the copy email you linked to. Your email address is black lined out but is still readable. I thought I’d let you know in case you want to remove it fully?

  4. Flo Henson says:

    Hi Jennie,

    How many subscribers do you have? I hope it’s many thousands! What you have just written is too good to be wasted on only a few of us. The whole world needs to see it.


  5. Chris Heppner says:

    Jennie, many thanks again for all your invaluable work on our behalf. One could ask back “and don’t you people have anything better to do than invite people like Shorter to come and give you advice?” But as you say, things overall do seem to be improving, and we can be thankful for that–and your work has played a significant role in that, I am sure.

  6. Mfairma says:

    Interesting blog, Jennie.

    I worked briefly in FOIA as I became too sick to continue to work. While many in other departments frequently forgot that their emails could be FOIAed and let slip comments they would not want made public, many were very aware of the need to moderate their opinions in email to avoid future embarrassment. You would be better able to judge than I, but Susan’s positive comment may have been made out of the awareness that Barbara’s comment would reflect negatively on HHS if FOIAed.

    • Jennie Spotila says:

      Absolutely a possibility! By March 2015 (when this email exchange happened), multiple advocates had filed many different kinds of requests with both NIH and CFSAC (and other agencies). I would not be at all surprised if Dr. Maier had that in mind, although Ms. James’s candor was a bit surprising given the FOIA history. It’s natural to forget that emails can become public. I know several former federal employees who constantly asked themselves, “If this ends up on the front page of the WaPo, will I still say it this way?”

      • Mfairma says:

        Yeah, that comment exactly was what I often heard and what people processing FOIA tried to instill in other departments. Phone and in-person discussion is where the more honest assessments would happen. But, of course, some people forget and, presumably, some people just don’t have enough restraint to not put stupid comments in writing.

        • Anonymous says:

          In fact, anyone working in a public-facing organization (nonprofit, governmental, private, academia) would do well to heed their words. I have never worked in government but was the de facto representative for the healthcare group I previously worked for. 70% of my work took place outside the group. I was always careful about what I wrote and said, both because effectiveness/ diplomacy/ politeness demands it but also because stuff related to my work could be asked for by the public.

          But actions trump words. It’s all fine and good for someone to say something but what they do is really where it’s at.

  7. Cindy Downey says:

    Once again, Jennie, thank you very much for this article. It is an excellent reminder to our governments that we are not just a nuisance.

    Having nothing better to do…like say the lives we used to have before ME? Working, studying, volunteering, hiking, running, canoeing, camping, aerobics, tennis, entertaining lots, gardening, travelling etc. Wouldn’t that be nice?!! We want our old lives back, or some reasonable facsimile thereof. And, that is why, if we have an ounce of energy to spare, we try to convince the reluctant, and indeed biased governments around the world that people with ME deserve respect, care, commensurate research, and knowledgeable physicians .

    Many others have said this: with the diagnosis of ME (CFS) comes a trip to the human scrap heap. We are instantly suspected of laziness, or fraudulently seeking disability funds. Or, of being delusional. Or, it appears of being dangerous. The Toronto branch of Health Canada was in lock down during the peaceful, Thursday, October 6th protest. Did anyone else, anywhere, note government offices locked for the day?

  8. It is literally CRIMINAL what they are doing at the DHHS agencies over toxic injuries (including CFS/ME) and I can prove it.!!!! Filed a complaint with the DOJ today. They said they would expedite it.

  9. Thank you, Jen. Well said and important.

  10. kathy d. says:

    Jennie, you have done nothing wrong and everything right.

    You are providing invaluable, essential advocacy work for those of us with
    ME/CFS and thousands of us appreciate it.

    I think that the offhand, callous remark is typical of what many government staff people think of people with our disease … that it’s an annoyance. HIV/AIDS was ignored for a long time before a movement and many deaths pushed it to center stage.

    I recently saw a video of people laughing at a press conference about men dying of HIV/AIDS held during the Reagan administration. It was shocking, to laugh about death of young, active people. It took a lot of work to turn that around.

    And you are one of the most hard-working, stalwart advocates for tens of thousands of us.

    I say, “don’t let the turkeys get you down,” and know we all appreciate your work.

    I’m just worried about the next administration taking a buzz saw to medical research and insurance, not to mention disability insurance. It’s not a people-friendly crowd.

    We’ll all have to pitch in more.

  11. Laurie P says:

    Today is Thanksgiving and I’m very grateful to Jennie for all of the work that she does for us and to this community that keeps things moving forward. If pay was funneled out of the paychecks of doctors, researchers, government officials/employees and the media, to us for the part of their jobs that we are doing, that they aren’t doing, things would change much faster!

    Today, I’m grateful to be awake during daylight hours and to be able to peak outside for glimpses beyond my blackout shades. I’m grateful that I don’t have a migraine. I woke up and there were flashing lights in my head with my eyes closed. My head is very hot, my eyes are burning, I’m wearing specially tinted glasses that help with migraines and my sleep and I have an ice pack wrapped around my neck. I wish I could have a seated shower; it’s been 13 days, but it’s not going to happen today because that would be all that I could do and I’d have to recover for a couple days afterward. That would leave me feeling like I didn’t have a holiday. I’m 50 years old and I live in an apartment in my parent’s house. I’ll spend the day where I spend every day, in my bed. I’ll spend the day alone. I’ll eat the same few foods I eat every day, that someone else prepares for me and I’ll drink water. Having hypoglycemia, food allergies, histamine and tyramine sensitivities and digestive problems, there aren’t very many foods that I can eat. I’ll eat what I can and I will still weigh under 100 lbs.

    Yesterday, I found out that the latest email server that I have stores all of my email messages until I delete them and that my box was full and that I couldn’t receive anymore email. My old server would automatically delete old messages after a certain amount of time or number of messages. I had pages and pages of messages that I had already downloaded but that I had to delete to make space in my box so I could receive more email again. As I was doing this, whatever message happened to appear at the top of a page of messages, would display in a side bar. One of the email messages I caught a glimpse of as I was quickly deleting all of these emails was of a post Justin Noble made earlier this year. I stopped deleting messages to reread this message. He had posted about all of the testing that he thought should be done for us at a Center of Excellence. At the bottom of the post he wrote:

    “The sooner they do this the sooner answers will start to show themselves….

    Subsets will be defined. Biomarkers determined……people will be saved

    Build it and we will come……”

    I read this and cried. How many more people must die? I am grief stricken by all of the pain and suffering and loss in our community. I am grief stricken by all of my own pain and suffering and loss. It’s incomprehensible. What we want most is not to be sick. What we want most is not to suffer. What we want most is to have our lives back so that we can do all of the things that we would rather be doing. But, WE DON’T HAVE BETTER THINGS TO DO than to get people to do their jobs so that we can be well and that we can do all of the things that we would rather be doing before it’s too late. We are trying to save our lives, salvage our lives and help each other do the same. It is beyond me that fellow human beings can’t understand this!

    To anyone else who asks, “Don’t they have better things to do?” The answer is “NO!” We don’t have better things to do BUT they do have better things to do. They need to get to work funding this disease and helping us in every way they can and figuring out more and more ways to help us! Each and every one of us is valuable. We are not expendable because they either can’t or won’t do their jobs!

    • Jennie Spotila says:

      I am grateful for you, and all my readers! You are right: we have nothing better to do than take care of ourselves and fight for our rightful place in research and healthcare.

  12. Sabrina Brown says:


    Thank you so much for dedication and all that you do in your advocacy work for all of us with ME/CFS. You are a treasured Angel.💝

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