The Truth Is Not Always Nice

My parents used to tell me, “If you can’t say something nice, then don’t say anything at all.” But they also raised me to tell the truth, especially when speaking to authority. I have to say some true things today, but I will be straight up and tell you that these things are not nice.

The starting point of all advocacy is to demand that things be done differently, and first and foremost that requires telling the truth. What varies within social movements is the ways people tell the truth, ranging from polite to confrontational. Not everyone who wants to protect the Affordable Care Act is involved in ADAPT. Not everyone who wants a cure for HIV/AIDS is a member of ACT UP. Very few ME activists are able or willing to conduct a public hunger strike.

Over the course of my advocacy career, I have not wavered from the truth but I have varied the degree of niceness with which I’ve spoken that truth. I am very eager to applaud good news coming from the government but if I only told the nice truths, you would not hear from me very often. Yet I don’t roll out my accountability engine every single time that someone in power says something problematic. I make judgment calls about whether something is insignificant and unworthy of comment, or whether it seems insignificant but is actually important for you to hear.

Today, I am telling you the truth about one of those seemingly insignificant comments that actually speaks volumes about NIH attitudes.

Dr. Avindra Nath is the Principal Investigator of the NIH Intramural Study on ME/CFS. This study is a very deep dive into the biology of ME, and we have needed such a study for decades. Subjects will spend several weeks at NIH, and will go through every possible test for physiological abnormalities. Further work will be done in the lab, conducting experiments with samples. It is a very rigorous study.

Dr. Nath gave a presentation about the study at the September 2017 UK CFS/ME Research Collaborative meeting.* The presentation described the NIH study in detail, and I strongly recommend watching the video in order to understand it. I want to talk about some of the comments Dr. Nath made that were not about the study per se, but about people with ME.

After describing the things that led to the study (including Brian Vastag’s seminal open letter to Dr. Collins), Dr. Nath mentions the ME Advocacy petition against the study (~7:00 in the video). He says he “learned a lot” through that experience, and then summarized the various actions NIH has taken on a slide titled: “To gain the confidence of the ME/CFS community”. In addition to holding internal seminars and periodic calls with the ME community, Dr. Nath said that they understood the fears of the community. After mentioning our fears of not being taken seriously or being classified as having mental illness, Dr. Nath commented on patients’ fears of a government conspiracy (9:35 in the video). He pointed out that NIH scientists are paid by the government, but “we’re not some government conspirators.” Dr. Nath did not characterize how many people he thinks ascribe to conspiracy theories, but he must think it is a significant number if it was important enough to mention in his presentation.

As is the case with most stereotypes, there is a kernel of truth in this. There certainly are, and have always been, people who believe in conspiracy theories. They believe that particular research has been suppressed, or that health insurance companies are influencing science to avoid paying for treatments, or that the government is intentionally under-funding and under-studying ME for nefarious reasons. But to imply that a significant proportion of the ME community believes these things is wrong. In fact, the ME community already proved its collective intelligence in the investigation of the PACE trial. It was people with ME and their allies who labored for years to uncover the truth about PACE-Gate. The advocates doing that work have been called “vexatious,” “militant,” and conspiracy theorists. But it turns out: we were right. It is past time for NIH to drop this stereotype, and recognize that people with ME are like every other group of advocates: the majority are smart, savvy, and reasonable people, and the actual conspiracy theorists are a tiny minority.

At the end of his presentation, Dr. Nath acknowledged the work of his team on the NIH study. Check out how he referred to his team:

TEAM TIRED.

I mean . . . seriously?????????

Look, I’ve been around academics my entire life. My Dad has a well-earned reputation of making silly jokes in his presentations and lectures. I get it. Scientists are, frequently, goofy nerds.

But this is just flat out tone deaf. Is Dr. Nath saying his team is tired from working on the study, or tired of the study subjects? Or that we, the research subjects, are tired? Maybe this is just a cute inside joke that Dr. Nath thought he could share with the conference audience.

Perhaps Dr. Nath is unaware that there is a long history of government scientists joking about people with ME (such as this news report from 1996 at minute 4:36 and 7:10). Perhaps no one on the communications team has briefed Dr. Nath on the flawed framework adopted in the 1980s and 1990s by NIH scientist Dr. Stephen Straus. I suppose it is possible that Dr. Nath is completely ignorant of how the word “tired” has been thrown in the face of every single person with ME, including myself, to minimize our disease.

If Dr. Nath is completely unaware that people – including government scientists – have used the word “tired” to belittle, demean, and dismiss people with ME, then the NIH communications team needs to get on that and educate the man. To be honest, though, I doubt this is the case. After the epic fallout over controversial team leader Dr. Brian Walitt’s lecture invitation to “CFS” denialist Dr. Edward Shorter, how is it possible that anyone working on ME at NIH is still ignorant of this history? How is it possible that – after every policy, advocacy, and scientific development of the last three years alone – anyone in this landscape thinks there is something funny about this disease? Or that “tired” is an adequate description of what people with ME endure?

Or maybe this is standard practice at NIH to belittle a disease and the afflicted with cute titles? Perhaps the National Heart, Lung, and Blood Institute has a “Team Wheezy” working on asthma? Did I miss the memo about a National Institute of Neurological Diseases and Stroke narcolepsy study being conducted by “Team Dozey”?

I know what team I’m on. It may not be nice, but it is most definitely true: I am on Team Tired Of This Shit.

NIH must conduct whatever communications and sensitivity training is necessary to obliterate this kind of talk from the ME landscape. NIH, as an institution and as a collection of individuals, needs to correct its orientation towards this disease. ME is a serious disease that costs our economy billions, that confines people to their homes or beds for decades, and that ends in suicide for too many. And while our lives have burned, NIH has fiddled around instead of investing the research dollars that the director of the National Institute of Neurological Diseases and Stroke ADMITTED are required.

If Dr. Nath and NIH genuinely want to gain the confidence of the ME community, then it is time to cut the crap and get serious. It is time to treat people with ME with respect and decency at all times.

The truth is: You can joke about it after you have actually produced results that help us.

 

 

*Background: The CMRC launched in 2013, and has recently come under fire from journalist David Tuller. The CMRC Executive Board’s Vice Chair is Dr. Esther Crawley, who publicly accused Tuller of writing “libelous blogs.” When Tuller wrote to the CMRC about this, the Board expressed full support for Dr. Crawley.

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27 Responses to The Truth Is Not Always Nice

  1. Matina Nicholson says:

    Thank you Jen as always! I don’t think he would like if I called himTeam Stupid…just between you and me.

  2. I’m on Team Tired of this Shit too. If he thought that was funny, it was not, no matter how you interpret it. Thanks for this excellent piece. Because of you, Dr. Nath and others are less likely to get away with this shit.

  3. Cindy Brewer says:

    UNTRUE, HURTFUL, DAMAGING, UNFAIR! I hope that what goes around doesn’t come knocking on his door one day! One ME patient to another ME patient has to laugh about the struggles to survive the discouragement ME can cause. However being the butt of someone’s cruel joke in order to entertain his colleges is poor taste which was referred to as bullying in elementary school. My ME began in 1984 and it has been a struggle and caused too many problems to mention. It is sad when you are trying so hard to be disrespected that way and among doctors who have power to treat or mistreat us. Very unfortunate. I do think that some day the truth will be well understood. Hopefully in our lifetime!

  4. Sue Klaus says:

    Thank you. Proud member of TTOTS!

  5. Rivka says:

    Amen.

    Dr. Nath, please take our situation seriously. We need your help, not your poor attempts at humor. Would you call your post Ebola patient something similar?

    Rivka

  6. Whether Dr. Nath means it as trivializing or not, you are correct.

    The sad part: I didn’t get it until I read your WHOLE post – and this week is my 28th year anniversary of coming down with this devastating disease and losing my whole life.

    I SHOULD get it – the wall of indifference I’ve faced in marketing fiction with a main character who has ME/CFS has been fairly massive. I’m just used to it.

    I’m joining your team. Team Tired of This Shit, do you have room for one more?

  7. Tina says:

    It makes you wonder if the sympathetic words on the patient phone calls habe any sincerity or are just part of a PR strategy. Like the denier presentation that was totally kept from the patients and not mentioned in the call to inform patients of NIH activities concernong the disease, this bad joke breaks down trust. Yet they need to go way overboard to repair the distrust caused by their own agency’s actions. Ironic that he gave a presentation on how to gain patients’ confidence, then he uses a word that makes us doubt his sincerity or, at the least, makes ud doubt thst he understands our disease and plight.

  8. Jule says:

    Unbelievable, yet completely believable. I am on Team Tired of this Shit too.

  9. They're out to get me says:

    As you say, ‘Team Tired’ would be less of an issue if not for the history of prejudice and quackery (exemplified by their invited speaker, Edward Shorter).

    “There certainly are, and have always been, people who believe in conspiracy theories. …
    But to imply that a significant proportion of the ME community believes these things is wrong. In fact, the ME community already proved its collective intelligence in the investigation of the PACE trial. It was people with ME and their allies who labored for years to uncover the truth about PACE-Gate. The advocates doing that work have been called “vexatious,” “militant,” and conspiracy theorists. But it turns out: we were right. It is past time for NIH to drop this stereotype, and recognize that people with ME are like every other group of advocates: the majority are smart, savvy, and reasonable people, and the actual conspiracy theorists are a tiny minority.”

    Sounds like patients identified and picked apart a ‘conspiracy’!

    Has Nath ever spoken out about PACE? Maybe if the research community cleared up their own messes, instead of leaving it to stigmatised patients to fight against quackery, more patients would be willing to respect them instead of fearing the worst.

    If authority figures stopped behaving poorly, and then conspiring to protect their own reputations, and be more trusting of them.

  10. Marc Simon says:

    I don’t think “team tired” is an innocent mistake on the part of Drs Nath and Walitt. Rather this is a way for them to say: “see we are not accountable to you, we can knowingly insult you and get away with it because we are more powerful than you are.” There is a very good chance that they knew ahead of time that this would inflame the patient community and elicit behavior that they could then label as unhinged. The same goes for their tactic of inviting Shorter to make a presentation.

  11. Doug South says:

    When I first heard the “Team Tired” slide, my first thought is that the entire team should be renamed to “Team Fired” and immediately removed from researching ME. They have an OBVIOUS bias against a true study of ME. With that in mind, I’d like to take exception with this one statement:

    “NIH must conduct whatever communications and sensitivity training is necessary to obliterate this kind of talk from the ME landscape.”

    Please don’t. That would only make it harder to identify those that have a bias against finding the truth behind ME. I’m tired of this shit too, but teaching bad people how to communicate better still leaves us with bad people that hide behind a smile.

    If the NIH wants the confidence of the ME community the only way to gain that confidence is to employ people who truly care and want to make a difference. “Team Tired” does not fit that bill.

    • Jennie Spotila says:

      EXCELLENT point, Doug. They should assign people who truly care and don’t need reeducation. That said, “Team Fired” made me think of this:

  12. Sharon Rousseau says:

    Thanks for this. If any scientists on “TEAM ME” would like to know why we are so sensitive not even taking into account atrocities of the CIHR in Canada, CDC redirected funds, UK’s PACE, SMILE, Lightning Process, etc.it is because of MAIMES Medical Abuse in MEs (Dr. Myhill). On top of feeling like you are on death door, you reach out for help and you hear this http://www.tandfonline.com/doi/full/10.1080/17482631.2017.1392219

    • Sue Klaus says:

      Thank you for posting this link. Reading it brought back all the abuse and gaslighting since I got sick in 1979.

      FWIW,I forwarded the link to Mayo Clinic, which still disbelieves.

  13. It’s true, it’s not nice but it is such a relief to find someone willing to say it the way it is.
    The next comment following resistance to ‘Team Tired’ would logically be, ‘What’s the matter, lost your sense of humour?’ Perhaps, it has worn a little thin in places. 40 years of dismissal and ridicule by consultants of numerous disciplines has that effect. Thanks to Canadian Dr Theron Randolph and the original Clinical Ecologists, Dr Colin Little in Australia and now doctors like Sarah Myhill, with MAIMES in UK who are willing to stick their necks out, we have always had a modicum of belief and support. Keep the awareness going, Jennie, onward and upward. 🙂

  14. billie moore says:

    “Team Tired.” Sounds like something Trump would say.

  15. deboruth says:

    Headlining his work force as “Team Tired” indicates that neither Dr. Nath nor the people on his team have any understanding of the disease they are supposedly researching, nor how to properly target and design their research. “Tired” is not among our distinguishing features.
    No way would “Team Tired” pass for humour at the Saturday Night Live writers meeting. It is simply not funny because it has no legitimate connection to the subject. For something to be humourous, a la SNL, it has to have some connection, the twisting of which produces humour.
    I read it as just plain contemptuous, mean, ignorant and insulting, which I hypothesize may well be how it was intended even if Nath does not or cannot realize or recognize such.
    Even if Nath is not able to consciously recognize such feelings he must see that “Team Tired” is a distancing mechanism that separates the “Team” from the patients and describes alienation on the part of the team. He is not supposed to be researching “Tired.” He is supposed to be researching encephalomyelitis, the biomedical nature of PEM, the initiating events leading to chronic disability, etc. Where on earth did he get that canard from?

  16. Kathryn says:

    I saw this when it first happened but being brain fogged, weak from not only ME and ALL that comes with it, but another disabling disease. I’m bed bound now after living(?) with this for over 20 years. I’ve done my share of advocacy, pushing and crashing throughout the years. The first book I read about this disease was Oslers Web by Laura Hilldebrand. That was quite the eye opener. I read everything I could find about ME. Of course at the time of my diagnosis it was CFIDS or CFS. I printed off pages after pages giving them to family and friends. I wrote letters to my state representatives about having a debilitating disease that doctors were not being educated about and our own government was not funding enough for research. I listed websites to check my information. I never heard from one person. I was spinning my wheels and going no where, losing family and friends along the way. I joined the MillionsMissing rallies in San Francisco and Sacramento spending hundreds of dollars buying posters, banners and renting an RV to transport all the supplies and 8 people. There were more PWME at the rallies than healthy people. The ones that organized these were PWME. I know the one that organized the San Francisco 2016 rally. He is still bed/house bound from taking that on. We continue to try to prove that we are NOT TIRED and in doing so crash. Our government has done us a disservice since the 1930’s. This disease has raised it’s head every decade and they’ve done nothing. I have little hope that this team that NIH came up with will have answers for us. I have more confidence in the National Organization of Women helping than NIH. Unless we can hold their rear ends(!) to the fire or chain ourselves to the doors en masse, they don’t have any accountability. They obviously don’t have our best interest at heart. They have an agenda. What that is I don’t know! So sign me up for Team Tired of This Shit too‼️ (thanks for not having a limit on characters I could use, although it would have saved all from reading my ramblings😎)

  17. Kathy D. says:

    I agree with most of this post. Team Tired: outrageous.

    But I do want to say that I sympathize with people in ADAPT. They are heroes in my view and that of other people with disabilities whom I know. They were desperate. If the ACA’s Medicaid expansion was ended, many of them would lose life-saving equipment and caregivers — which Medicaid pays for. What they did was not to have fun, not a 59-hour lie-in for people who can’t stand or sit in chairs that aren’t wheelchairs. Not several days in the Texas sun sitting outside.

    We all don’t have to use the same tactics. But I, for one, think we have to respect all people with disabilities who aren’t rich and have to depend on government programs for their survival. And they decide how they want to oppose cutbacks in the services that keep them alive and able to work, study, live with families and get everyday necessities.

    And also with ACT-UP: They only used civil disobedience tactics after thousands of people were dying, including at St. Vincent’s AIDS Ward, a few blocks from my house, and the government was doing nothing. In fact, a video taken during a press conference in Reagan’s time (and linked to from Slate magazine) showed journalists and politicians laughing over AIDS deaths. I saw it — appalling to any caring person.
    So, people with HIV and AIDS and their friends and relatives did what they had to do.

    If Medicare becomes endangered, a program many of us rely on, then many retirees, people with disabilities and family survivors may have to take action.

    And, I, who do not subscribe to many conspiracy theories in general, see what’s going on in D.C. and see machinations at every level — to get in candidates into office, to pass bills without the required processes of debate and public participation.

    And I do know that insurance and pharmaceutical companies were involved in writing the Medicare Drug Plan. It was written about extensively. And now the premium prices go up every year and the formularies drop medications constantly and also raise prices. Deductibles for many medications, including for AIDS and cancer, are exorbitant — or they’re in a high tier where the patient pays a huge co-pay. And the doughnut-hole where there is no coverage is thousands of dollars.

    All I know is that whatever tactics people with disabilities use which we can agree or disagree with – the people have my understanding and support. They feel they have no choice when they think their very existence is on the line.

    • Jennie Spotila says:

      Kathy, it sounds like you interpreted my post to mean that I disagreed with ADAPT and ACT UP. Just to be crystal clear: I think ADAPT and ACT UP are made of heroes.

  18. Vickie says:

    Jennie, what would we do without you?

    Sign me up for Team Tired of this Shit.

  19. Melodi Adams says:

    Seems clear he was referring to the face that his team is already tired of dealing with us. And the scary part is that until they, themselves have experienced what it feels like to have this horrible disease, and they can hop in their car, overcome their tiredness with a cup of coffee, and head to their team every day free of this illness, they will continue to see us as a tiring group of conspiracy theorists instead of a group of people whose lives have been stolen and their suffering tortuous. If only ‘tired’ could be what we feel. I lost my health to this in 1998, my daughter at age 15. We are not heard, we are not treated, we suffer in silence in a community that finds us odd and continually thinks a pep total will get us back on track. We are Team Utterly Alone. Team Suffering. Team Lost Lives. So I find this particularly troubling at the outset. This is the same way we were viewed at the first outbreak when the team tired of us quickly and went skiing instead. If they could only exist inside our bodies for a day, it even an hour, they would be Team Tireless, looking for a cure.

    I’ve only recently found your blog, while searching for the transcript of a young man named Matthew lazell-Fairman from the 2012 conference because it moved me so much. I see we are no further. I stopped looking for research years ago and went about the business of trying to survive without SS Disability because they say I’m not sick. And then to my horror, my daughter fell ill, and I began fighting a Denial so strong I could barely treat her as if she had ‘It.’ it was impossible to bear my agony as I tried to work in a body suffering so severely, but watching her suffer made me understand why people will hold something like their country’s secrets to their death, but give them up immediately when their loved one is threatened. I don’t look for a cure anymore either as I see only fires of research taking bites out of an elephant and nobody able to agree what they are looking at. I am mostly insulted as they come out with theories that minimize the crippling agony of this illness that still causes people’s eyes to glaze over and move on when we say we have CFS. Nobody offers a hand. Nobody knows.

    Thank you for your advocacy, it gave me hope to read about you. Thank you for your blog, it also have me a twinge of hope.

    • Melodi Adams says:

      Forgive the many typos. ,*The Fact… *Until they Can’t….*pep talk *gave.
      P.S. my doctor’s number one therapy is still exercise and CBT. I nod, promise to do better, and get my prescription each visit. He says they’ve ‘proven’ it works. A chiropractor told my daughter the other day that they’ve ‘proven’ it is ‘overactive nerves sending pain signals that aren’t really there.’ The beat goes on.

  20. Kathy d. says:

    Omigosh, to Melodi, get another doctor if you can. Or send him the CDC website pages on ME/CFS, the IOM 3 page summary of their report, whatever is short and to the point. Wonder what he’d think if he saw UNREST. Or would he still stick to the unscientific, backward drivel?
    Pain signals aren’t really there? These people should inhabit our bodies for a few days, and try to do anything.

  21. Advocates’ consideration of more challenging questions such as “How are we wrong about pace?”, “Do we mistreat others?”, “Are we biased?”, “Are we wrong about exercise & m.e?” will provoke necessary truth and eventual reconciliation. It is no accident that I could send the very same questions to medicine.
    Best wishes, Jennie.

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