2017 NIH Spending on ME/CFS Research

Posted on March 20, 2018 by Jennie Spotila

It is time to analyze how NIH spent its investment in ME research in 2017. NIH has not yet issued its own tally for 2017 through the categorical spending page, so I can’t say for sure how much money NIH will say it spent. Update, July 23, 2018: After NIH published its numbers, I reconciled it all again. I’ve updated this post to reflect my adjusted numbers. But it’s easy enough (although time and spoon consuming) to figure it out by examining the database entry for every relevant grant.

There are a lot of ways to crunch these numbers, so I hesitate to give you the oversimplified bullet point version. However, I know that many people don’t have the patience or capacity to wade through the details, so here is the bottom line:

  • In Fiscal Year 2017, NIH spent $13,946,881 $13,967,704 on ME research. This represents a 90% increase over FY2016.**
  • However, 52% of the spending total came from the new Collaborative Research Centers. Without the Centers, NIH actually spent LESS on ME research in FY2017, almost 15% less.
  • While those Centers are an essential step forward, the drop in funding through traditional grant mechanisms is a huge concern that we cannot ignore.

Let’s dive into the details.

Traditional Grant Mechanisms and Intramural Funding

The vast majority of NIH funding for all diseases is spent through traditional grant mechanisms, i.e. a scientist submits a grant and NIH funds it. Another major category is the money NIH spends on its own research by in-house investigators (intramural research). ME research was funded through both pathways in FY2017.

I had projected a little over $5 million for the year, and I’m glad I was wrong. These grants and intramural funding combined for a total of $6,721,614 $6,742,437 in FY2017. The good news is that Dr. Friedberg’s psychological study accounted for only 6.8% of that total. Orthostatic intolerance studies received 9%, and the remaining 84.2% went to neurological and immune studies.

The bad news is that $6.7 million is DOWN from last year by almost 15%. In addition, new grants accounted for only 5.4% of the spending. This is a really big problem. We need a large and steady pipeline of new projects to be funded apart from the Collaborative Research Centers. If NIH does not expand its non-Center portfolio, the field will suffer.

But Wait, There’s More!

The big development in FY 2017 was the announcement of the three Collaborative Research Centers and Data Management Center just before the end of the fiscal year. All the Centers have been funded for five years, and the totals below reflect only the funding for FY2017. Combined, NIH spent $7,225,267 on the four Centers in FY 2017.

ME/CFS Collaborative Research Center at Cornell University, directed by Dr. Maureen Hanson, received $1,868,837 distributed over three projects and three cores. Dr. Dikoma Shungu will measure levels of a number of biomarkers in the brain before and after CPET looking for evidence of oxidative stress and neuroinflammation ($380,380). Dr. Hanson will measure pre- and post-exercise blood samples for a broad array of metabolic and proteomic changes associated with post-exertional malaise ($308,729). Dr. Andrew Grimson will look for gene regulatory changes in white blood cells and extracellular vesicles in pre- and post-exercise blood samples ($341,457). Dr. Fabien Campagne will lead the Integrative Data Analysis Core for the Center ($43,846). Dr. Betsy Keller will oversee the Clinical Core, including recruitment and CPET testing of ME/CFS patients and controls at three locations ($262,123). Dr. Hanson will oversee the Administrative Core, responsible for coordinating the large team and multiple projects, as well as several advisory committees ($532,302). Patient advocates named to the project include Carol Head, Dr. Daniel Thiel, and Erica Verillo.

Center for Solutions for ME/CFS at Columbia University, directed by Dr. Ian Lipkin, received $1,969,576 distributed over three projects and two cores. Dr. Lipkin will lead the first project, which will use sequencing to survey viral, bacterial, and fungal infections in blood, oral, and fecal samples from ME/CFS patients and controls ($342,394). Dr. John Grealy will examine gene expression in blood samples, specifically looking for metabolomic and transcription changes associated with ME/CFS ($434,320). Dr. Anthony Komaroff will oversee the clinical project with three aims: establish a clinical network collecting survey and biological data, as well as longitudinal data through a new myME/CFS app; mine existing databases to identify clinical sub-types; and assess the utility of the in-office lean test ($566,192). The Administrative Core, also overseen by Dr. Lipkin, will coordinate all the work and advisory committees, as well as several digital initiatives aimed at recruiting new investigators and scientific interest ($626,670). Named collaborating patient organizations include Solve ME/CFS Initiative, #MEAction, and The Microbe Discovery Project.

The Jackson Lab ME/CFS Collaborative Research Center, led by Dr. Derya Unutmaz, received $2,1,25,950 for two projects and two cores. The unifying hypothesis of the center is that people with ME/CFS are infected with microbes (in the gut microbiome) that stimulate immune cells directly or indirectly through metabolic byproducts, and that the immune cells then respond incorrectly to that stimulation, producing disease. Dr. Julia Oh will lead the basic research project to identify the bacteria that causes immune system activity, as well as molecular mechanisms of that immune cell activation ($505,792). The clinical research project, led by Dr. Peter Robinson, will analyze a large amount of clinical data along with the molecular data in order to identify correlations that point to biomarkers and disease mechanisms ($651,220). The Clinical Core will be led by Dr. Suzanne Vernon and Dr. Cindy Bateman, and will recruit the patients and controls for the study, as well as collect and manage vast amounts of clinical data through an online tracking platform ($428,839). Dr. Unutmaz will lead the Administrative Core to coordinate the work of multiple investigators at multiple locations, as well as data sharing and community engagement ($517,849).

Finally, the Data Management and Coordinating Center will be led by Dr. Rick Williams of the Research Triangle Institute and Dr. Peter Rowe of Johns Hopkins ($1,260,904). Not only with the DMCC store and consolidate all the data from the Collaborative Research Centers, but it will also tap into SMCI’s patient registry. The DMCC will not be a static repository; it will support data mining and analyses.

Other Important Numbers

I would like to point out two other numbers we should pay attention to: indirect costs and NIH funding source.

Every grant from NIH is composed of two pieces: the direct costs and the indirect costs. Indirect costs are basically overhead, and go to the institution rather than the individual researcher’s lab. Indirect costs include the cost of operating the research space, administrative salaries, and the like. These costs are needed to do the research, but it’s more like infrastructure rather than the funding needed to conduct an experiment. The combined total amount spent on indirect costs in 2017 was $3,867,304, or 27.7% of our total funding. That money went to the universities and institutes where the research is being done, rather than directly to the researchers themselves.

I think we also need to keep track of which Institutes at NIH are investing in ME research, and with how much. A total of eleven Institutes contributed to the RFA Research Centers, although the lion’s share of the funding came from only four. In the case of the other grants (not including the intramural funding to Saligan and Nath), again only four Institutes contributed. Here is the combined totals for the top five sources:

  • National Institute of Allergy and Infectious Diseases – $5,870,859
  • National Institute of Neurological Disorders and Stroke – $3,372,416
  • Office of the Director – $1,503,729
  • National Heart, Lung, and Blood Institute – $500,000
  • National Institute of Nursing Research – $357,188

What I find fascinating about this is that NINDS is still considered the lead Institute given its role on the Trans-NIH Working Group and Dr. Whittemore’s prominent role in communications and administration. But it is NIAID that actually spends the most.

Overall Conclusions

The combined total of all NIH spending on ME research in 2017 was $13,946,881 $13,967,704, an increase of 107.2%. However, as shown in this table, if we remove the Centers from the total, NIH spent significantly LESS on ME research: almost 15% less than FY2016.

Adjusted Spending $ Increased (Decreased) % Increased (Decreased)
2008 $3,175,262
2009 $3,810,851 $635,589 20%
2010 $4,248,535 $437,684 11.5%
2011 $4,602,372 $353,837 8.3%
2012 $3,663,430 ($938,942) (20.4%)
2013 $5,561,597 $1,898,167 51.8%
2014 $5,924,018 $362,421 6.5%
2015 $6,822,398 $898,380 15.2%
2016 $7,885,030 $1,062,632 15.6%
2017 w/o centers $6,742,437 ($1,142,593) (14.5%)
2017 total $13,967,704 $6,082,674 77.1%

Why should we care? Because NIH is putting most of its eggs in the Centers basket. This makes the overall portfolio vulnerable in the event that the Centers close down in the future. Long-time advocates will remember when the last group of Centers of Excellence closed, making an enormous dent in NIH spending that took us years to recover from.

Putting so much of the money into the Centers is risky for another reason: lack of diversity. All four Centers are on the East Coast, and the research projects have substantial overlap. There are also no treatment studies in that basket. The Centers are an essential building block for our future, but they cannot be the whole foundation. NIH repeatedly says that the expectation is that these Centers will spin out additional applications for the traditional funding mechanism. But this is going to take time – a lot of time. We need a steady flow of investigator initiated grants, as well as additional RFAs to really open the pipeline.

Yes, doubling our money is great. NIH deserves praise for this, and the Centers are pursuing strong hypotheses. But the true metric of success is not how funding compares to the year before, but whether we have a diagnostic test and proven treatments. We don’t have that.

And no matter what NIH says, we won’t get it on $13 million per year.

 

**July 25, 2018: corrected mathematical errors

Additional resources: Read my analysis of NIH spending in 2017, 2016, 2015, 2014, 2013, 2012, and 2011.

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Doing Patient Engagement

Posted on February 22, 2018 by Jennie Spotila

From: Savvy Cooperative

One of my passions is engaging people with ME in research, and especially as more than just subjects of the research. That’s why I co-authored a report on best practices in patient engagement. As the NIH-funded Collaborative Research Centers kick things off, they will be revving up their own engagement with patient partners. To that end, I offer these examples of how not to do patient engagement (via Twitter). For those who want to dig deeper, here are a few articles to consider:

Patient Engagement: You’re Doing It Wrong

Patient engagement is a verb, not a noun

Principles for Authentic Engagement

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“Take Care Of Each Other”

Posted on January 26, 2018 by Jennie Spotila

“Take care of each other.”

Those were the closing words in Anne Ortegren’s suicide letter. Anne’s death came as a shock to many of us, myself included. Anne was a friend and long-time supporter of my work. She made a final request to me (and others) to publish her last letter. I took a long time to write this post because I wanted to do right by Anne, but also do right by my fellow people with ME.

Let’s start here: If you are in crisis, please reach out for help. In the United States, consider reaching out to the National Suicide Prevention Lifeline: 1-800-273-8255 or the Crisis Text Line: text START to 741-741. International readers can find country-specific resources in this list of crisis lines organized by country.

Anne is not the first person with ME to end her life, and there are far too many who went before her. We all feel the blow when this happens. Yet, most of us are not surprised that this is an issue for our community, and research backs us up on that. A study from last year found that there was an increased risk of suicide in 17 of the 19 health conditions examined. Beyond the risk associated with being sick, author Johann Hari recently wrote, “if a community feels it has no control over the big decisions affecting it, the suicide rate will shoot up.” Between the fact that ME is a serious disease and the fact that people with ME feel they have no control, it is not at all surprising that we are at an increased risk for suicide.

We need hope, and I see two different kinds of hope. First, there is hope at the institutional or systems level. In her final letter, Anne made a plea for this:

To allow ME/CFS patients some hope on the horizon, key people in all countries must step up and act. . . . I want a number of people from these agencies, and equivalent agencies in Sweden and all other countries, to stand up and take responsibility. To say: “ME! I am going to change things because that is my job.”

There is a second kind of hope, and that is the personal or private sense of hope everyone needs regardless of health status. It is the hope that, no matter how awful things are in one moment, there is the possibility that another moment can be better. Bruce Campbell calls this “realistic hope,” a combination of “acceptance and belief that improvement is possible.” While Campbell is referring to improvement in physical health, I interpret the hope of improvement more broadly.

One lesson I learned from Toni Bernhard’s books is impermanence. No matter how I feel in one moment, it will not always be so. This is a comfort to me when I am in pain, whether it be physical or emotional or spiritual. Toni calls this “weather practice,” and I have relied upon it to get through the last three years. In the depths of my grieving for my Mom, and my fear about my husband’s health, I have drawn comfort from the reminder that I will not always feel as bad as I do in a particular moment. And when the change comes, and I experience something wonderful, I embrace it as a gift (knowing that it too will not be permanent).

This is the essence of hope: that regardless of the pile of shit you are in right now, you believe there is the possibility of a moment of beauty or love or relief or comfort, even if you cannot catch a glimmer of that moment right now. I wish it were easy to sustain this kind of hope, but it is not. We need supportive people in our lives. We need a basic level of economic security and healthcare. We need to find meaning, even in our suffering.

I keep coming back to how Anne closed her letter: “Take care of each other.” How can we do that when, by its very nature, ME restricts our ability to take action and interact with the world? Those of us who are able to advocate for systemic change can do so, as Anne did. But I think Anne was also asking us to take care of one another in an individual way. Here are my suggestions, as a starting point.

We can take care of ourselves. Self-care is an enormous topic unto itself, and it is cliche to say that we have to take care of ourselves in order to take care of others. That doesn’t change how important it is, though. Anne wrote about the coping techniques that helped her. I know that if I consistently took her advice, I would be in a better place physically and emotionally.

We can be honest, good and bad. It is important to be honest about how we feel. Sometimes, expressing our pain can be a relief, especially when people respond with support. Sharing good news is great too. And sometimes, being silly or outrageous can lift your own and others’ spirits.

We can listen. I find myself skimming people’s lives on social media. Read a status, hit the like button, move on. It is better to slow down, and hear what someone really wants or needs to say. Maybe you can do this through an email or phone call, or maybe it means reading a social media post more carefully. Maybe it means asking a question. Regardless of the communication method, we can give each other the gift of listening.

We can believe each other. How many times have you read a comment from a person with ME about a treatment they tried or something they did and thought to yourself, “That’s not true. That treatment worked/didn’t work for me. I can/can’t do that thing they did.” I’ve done it, and people have done that to me. But measuring other people by our own personal, individual yardsticks rarely works out well for anyone. Instead, I try to hear the comment as being true for the person who made it. We’re not a collective judge and jury. We’re a community of people who happen to share an awful disease. It actually doesn’t matter (on the person-to-person level) if someone takes an approach that doesn’t fit mine. I choose to believe their experiences are true, and I appreciate it when others believe me.

We can encourage each other. Anne was unfailingly kind and encouraging to me. As I reviewed the messages we had exchanged over the years, I was struck by how many times Anne reminded me that my work was important and that it had an impact. She wanted me to keep going. A few years ago, she wrote to me: “Just know that – if you do have the energy and possibility to keep on going – you and what you are doing are important to a huge number of people. Those you hear from, like me – we are only the inner circle. The effect then goes on to many, many layers beyond that.” These messages meant so much to me when she sent them, and mean more to me now. I will strive to be encouraging to others as well, both in advocacy and in friendships.

We can reach out. Did someone cross your mind today? Tell them! I am always so grateful when someone messages me out of the blue with a virtual hug or funny meme. My friend Barb surprises me with occasional pictures of her pet lizard, to which I usually respond “KITTY!” Joey and I sometimes end up conducting conversations exclusively in gifs. Last month, I received a most generous and unexpected gift from my new friend Nancy. The reality is that we are so isolated by ME. A surprise “I thought of you today” feels really good! Pro tip: it feels just as good to surprise someone as it does to receive the surprise.

At the end of her life, Anne wrote: “If, hypothetically, the physical suffering could be taken out of the equation, I would have been able to live contentedly even though my life continued to be restricted to my small apartment and include very little activity. Unlike most people I could find such a tiny life bearable and even happy.” But Anne’s life was not tiny. She achieved more within her restricted circumstances than most people could. I am so sad that she is gone. Everyone who loved Anne is in my thoughts, and I hope that people with ME will remember her. She shared so much of her “tiny” life with us, and tried to make our lives better.

What I am slowly coming to understand is that our lives are beautiful, painful, scary, comforting, and loving. The truth is that no one is spared suffering. The truth is that our lives, whether tiny or large, are a mixture of pain, pleasure, and monotony. My friend Josie writes about her “small, slow life that covers an area of less than a square mile” too, and she says this better than I ever could:

We are very rarely prepared to let anything be boring, to be ordinary. How easy it is instead to shade our experiences, to plump them, maybe in the hope that today or one day soon, they will better prove how much we overcame, how hard we tried, how deeply we lived, and how much we deserve care and love and success and all the rest. And who can blame us: we are all just trying to get by and life can be so horribly hard. . . .

The sparrows in the beach hedge call, “Can we not be enough? Can we not be enough meaning for your life today?” and the twist of my son’s hair at the nape of his neck says the same, and I want to say yes, yes, yes, you are enough today and every day and this is a good life.

My hope for all of us is that we can let our lives be tiny or boring sometimes, and that we also realize that each of us is not tiny at all. Like Anne, we live large, and we leave a mark.

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Expectations

Posted on January 6, 2018 by Jennie Spotila

Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film is here).

This much success was truly pie-in-the-sky dreaming four years ago. The film’s Kickstarter campaign had raised more than $200,000 in thirty days, four times Jen’s original goal. But even so, the possibility that this film would be anything more than a limited release art house film was hard to imagine.

And yet . . . here we are. Jen and her team imagined it. Then they strapped on some ass-kicking boots and made it happen. No amount of applause or gratitude will ever be enough to convey the magnitude of Jen’s achievement, and the potential this film has for people with ME.

And yet . . . we should make a little room in our minds and hearts for disappointment.

Perhaps you have asked your family and friends to watch the film on PBS and they won’t.

Perhaps you sent a copy of the DVD to your primary care doctor, and she shrugs and says she didn’t really like it.

Perhaps you’ve seen the film and gone to your doctor because you think you have ME, and your doctor blew you off.

As with all things in life, sometimes our unspoken expectations are not met and we struggle with the pain and anger we feel in our disappointment. Sometimes, we feel despair, or even get lost in that despair.

Apart from personal expectations, there are broader community expectations as well. CDC hosted a screening of Unrest and offered continuing education credits. Showings of the film around the country have engaged the public; showings in medical schools reach future doctors. The publicity, driven in particular by the PBS and Oscar stories, has raised the visibility of our disease to a level I have never seen before.

But this film – even if it actually wins an Oscar – this film will not be a magic turning point. This film cannot force a change in the training of healthcare professionals, or change the way disability benefits are determined. This film cannot provide the hundreds of millions of research dollars needed, recruit hundreds of researchers, or wipe away the stigma of this disease.

No film can do that.

Case in point: An Inconvenient Truth won an Oscar and brought climate change awareness to a new level. Yet climate change denial is going strong, including at the highest level of the US government. There is more public awareness of conservation, but that awareness has not translated into the actions and policies necessary to avert devastating climate change.

Awareness does not equal action, or even the political will to take action.

Case in point: in 2006, the CFIDS Association launched a multi-million dollar public awareness campaign paid for by CDC. I appeared in a story on NBC Nightly News. I gave more than a dozen interviews, most during a satellite media tour at the National Press Club. The Director of CDC and the Assistant Secretary of Health were among the speakers at a large press conference at the Press Club, and they said it was time to help us, and they said they would.

I cried that day. I cried because I thought this was our moment. I thought, After this we won’t go back to how things were. Everything changes now.

About six years later, Jen Brea would get sick and begin her journey of Unrest. Despite the interviews, the press, the public promises, we were and still are the #MillionsMissing.

I learned, eventually, that there is no Watershed Moment. There are a series of moments along a path that is (hopefully) more progress than backsliding. Science takes time. Politics take more time.

Case in point: HIV/AIDS. You are probably familiar with ACT UP and TAG, and the work that helped shift the federal government, in big and small ways, to invest in HIV/AIDS research and services. But the Trump administration recently fired the remaining members of the Presidential Advisory Council on HIV/AIDS, and there is no director of the Office of National AIDS Policy. Further changes contemplated by the administration could have a huge negative effect on people with HIV/AIDS and those who identify as LGBTQ.

Unrest is a powerful tool for us. But it will be impossible to achieve any systemic change without a great deal more work. I hope millions of people watch Unrest on PBS Monday, but I suspect that only a few individuals will join us Tuesday in seeking change.

I think of Unrest as an ax or wedge. Jen has driven this ax into the wood, but now we have to be the hammer that drives it home and actually splits the log.

Tell your family and friends about Unrest. Urge them to watch, either Monday, January 8th or via another way. Root Jen on when the Oscar nominations are announced on January 23rd, and let’s hope she gets her red carpet moment on March 4th.

Then pick up your hammer, and get back to work.

 

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Personal Positives

Posted on December 26, 2017 by Jennie Spotila

Ah, 2017. You pretty much sucked. I managed to come up with a few good things to be grateful for at Thanksgiving, but overall you were a trash fire. Actually, a friend of mine said that my year escalated from trash fire to oil pipeline fire, so let’s go with that. Health-wise, money-wise, emotional calm-wise, pet-wise, politics-wise . . . you name it, I struggled with it this year.

2017, I hate you.

But! You weren’t completely awful. Or you were, but I managed to squeeze a little joy out of you anyway. So here are my Personal Positives From 2017. #silverlining #shininglight

Best Basic Requirement: I survived. This seems like a basic thing, but not in 2017. Let me be clear, my life was never actually at risk. But there were times when I wondered what it would be like to go screaming into the wilderness and never come back. I thought about chucking it all, just quitting. I struggled hard with a growing sense of bitterness. But I made it through the year, and if you are reading this, so did you. Well done!

Best City: Toronto. My husband and I have made several trips to Toronto so that he could receive specialized rehab therapy, and we have thoroughly enjoyed the city. The people are friendly, the coffee is fabulous, and our AirBnB hosts are lovely. Canada is great, although it would be greater if they were more open to disabled immigrants.

Best Book: DON’T MAKE ME CHOOSE. I read some good books this year. In nonfiction, I have to single out How To Survive A Plague by David France, Through The Shadowlands by Julie Rehmeyer, and The Noonday Demon by Andrew Solomon. In fiction, I highly recommend The Stone Sky by N.K. Jemisin, The Stars Are Legion by Kameron Hurley (I love her Patreon for monthly short stories too!), and The Wolf Road by Beth Lewis.

Best Movie: The Last Jedi. No question. No hesitation.

Best Actress: Even if you don’t see/like The Last Jedi (what is wrong with you), I strongly recommend following Kelly Marie Tran on Instagram. Her joy is completely infectious.

Best Netflix Bingewatch: The Great British Baking Show!!!! How did no one tell me to watch this sooner? Even my non-cooking, non-baking husband loved it. Also, the reboot of MST3K was tons of fun.

Best Household Appliance: The Instant Pot. I have joined this subculture. Over the course of a week, I made enough food to feed us every night for a month. It is beyond wonderful to go to my freezer each morning, choose a home cooked meal, and then not have to think about dinner any further.

Best Waste of Time: Watching makeup videos on YouTube. I have no idea why I do this.

Best Knit: I am not knitting as much as I used to, which really bums me out. But 2017 was the year of the shawl for me. I made four, including one in cashmere laceweight. Sorry, no pictures because I haven’t blocked it yet. This is a sample version, though.

Best Podcast: For serious, thought provoking journalism, I recommend Uncivil. For writing advice, you need to listen to Get To Work, Hurley.

Best Encounters With Nature: I held a baby black bear, y’all! He was so tiny! I also saw a shooting star while listening to three great horned owls call to each other. I hope it’s a good omen.

Best Cute: Porgs!

Best Giggles: My niece and nephew, hands down.

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For Serious?

Posted on November 25, 2017 by Jennie Spotila

It’s time for another round of “How Stupid Is This?”

That’s a game I just invented. There are no rules, and definitely no prizes. Trust me. It’s a great game. It’s even more fun if you read this whole post in a game show host voice.

The Contestant of Stupidity this time is . . . ok, imagine a drum roll here . . . The Contestant of Stupidity is  . . . the CFS Advisory Committee!

*shakes pompoms*

*throws confetti*

*gets dizzy and has to sit down suddenly*

What did the CFSAC do this time that is Incredibly Stupid? You’re going to love this. And by love, I actually mean hate.

On Monday, November 27th, the public notice of the upcoming CFSAC meeting will be published in the Federal Register. The deadline to sign up for public comment at this meeting is . . .

. . . wait for it . . .

If you guessed close of business on Monday, November 27th, YOU ARE RIGHT!

YES! The meeting notice telling people how to sign up for public comment is being published ON THE SAME DAY as the deadline to sign up for public comment!

*turns to all of you* Well, audience? *all of you respond in unison* How Stupid Is This?

I cannot recall this happening before. I mean, we’ve had some short deadlines. And every time, advocates politely write in to the Office of Women’s Health to remind them that this is a very sick population, most of whom simply cannot turn on a dime and write testimony in ten days or sign up within three days or whatever. So don’t think that maybe the Office of Women’s Health doesn’t know that this deadline guarantees that many people with ME will miss the deadline, and therefore miss the opportunity to offer public comment at the meeting. They know.

You know what else is stupid? The meeting notice does not give a deadline for submitting written comment. Do you think that means the testimony is due on Monday the 27th? or maybe a few days before the meeting? or the day of the meeting? Your guess is as good as mine.

While we’re at it, check out this other stupid thing. According to the Charter, the committee is supposed to have thirteen members. So how many do you think are listed on the roster as of today?

FOUR. Four members.

That’s pretty awesome, yeah? These vacancies didn’t sneak up on anyone. I warned this would happen back in June 2017 and December 2016. I’ve heard new appointments are imminent, but there’s no way that they will swear in nine new members at the December meeting.

So if you would like to give public comment in person or by phone on December 13th or 14th, don’t wait for Monday!

Email your name and phone number to cfsac@hhs.gov TODAY! See the meeting notice for more instructions.

I think we can all agree, this was Incredibly Stupid. But congratulations CFSAC for being today’s Contestant of Stupidity! Let’s give them a round of applause, shall we?

via GIPHY

UPDATE November 27, 2017: CFSAC sent out the following notice this morning: “Due to a delay of a few days in publishing the FRN, we will be taking public comments through next Monday, December 4th.”

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Better Late Than Not At All

Posted on November 23, 2017 by Jennie Spotila

Last night, I was really struggling to come up with anything to be grateful for.

I can’t say that no one in our family died this year. I can’t say my husband is getting closer to returning to work. I can’t say my health has been stable this year. I can’t even say my dog is healthy, since we just found out he needs surgery next week.

So I wasn’t going to post anything at all about giving thanks.

But I feel differently tonight. Life is not giving me the big things I want, but there are many good things in my life nonetheless.

I’m grateful for the Instant Pot that made a scrumptious turkey breast in less than an hour with almost no effort on my part.

I’m grateful for the friend who joined us for dinner.

I’m grateful for the laughter we shared today.

I’m grateful for my niece (who apparently had a hot dog for dinner) and my nephew (who ate three bowls of what he called “cranberry applesauce”).

I’m grateful for the video I have from Thanksgiving 2013, which captured my Mom making my niece laugh.

I’m grateful for the new writing friends I made this year.

I’m grateful for my bed and soft flannel sheets.

I am grateful to be alive.

There are only a few hours left in Thanksgiving, so I’m getting this written just in time. I give thanks for what I have, and hope for the strength to carry the rest.

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More Thoughts on Suicide

Posted on November 16, 2017 by Jennie Spotila

Last week, Johanna Haban provided some important resources and information for people with ME who are overwhelmed or are contemplating suicide. This topic is complicated and very important to discuss, so Johanna and I spoke further about issues related to suicide.

Johanna has been disabled by a number of chronic illnesses over the years, including ME. She currently volunteers with Crisis Text Line and has experience on phone lines as well. Johanna’s opinions and suggestions are her own and do not represent those of Crisis Text Line, San Francisco Suicide Prevention, or any other organization. She is not writing as an official representative of any organization.

Important: If you are in crisis and seeking help, please consider reaching out to the National Suicide Prevention Lifeline: 1-800-273-8255 or the Crisis Text Line: text START to 741-741.

Why/when did you become interested in becoming a crisis line counselor?

I first started working at San Francisco Suicide Prevention in the late 1990s. It’s a wonderful organization, one of the oldest suicide hotlines in the country, and the skills I learned there were invaluable both on and off the hotline. More recently I have been working with Crisis Text Line for the past three years. Being disabled by illness myself now, I love that I am able to continue helping people from my own home, during the hours that I choose. If you have any interest in becoming a counselor yourself and especially if you are disabled, I highly recommend reaching out to Crisis Text Line. The training is superb, you are supported at every level including while you’re working, and there are many counselors with a range of disabilities due to the excellent accessibility.

Are suicidal thoughts common among people with serious and/or chronic disease?

In my experience, yes. Many of the people I’ve spoken or texted with have at least one chronic physical illness, sometimes more and sometimes exacerbated by mental illnesses. Another aggravating factor is social: so many people with ME are isolated, sometimes having lost friendships and the care of family members due to their illness.

It is very important, however, to recognize that there is a world of difference between saying “I want to die” versus “I’m going to kill myself.” As I said in the earlier post, when you’re experiencing a morass of such unutterably painful things, it’s entirely natural to want that to end, and if it can’t, then to think about ending your life to make it stop. And it is okay to feel that way!

People who say, “My disease is so bad, I just want to die,” may never even consider actually committing suicide. But they might be unfairly stigmatized and even hospitalized when they speak out. They’re the ones whose friends and family get angry or dismissive because they don’t want to “encourage” those thoughts but rather eradicate them. But these patients also the ones who are most capable of taking care of themselves mentally and emotionally. It’s a brave thing to reach out for help — a bit of a cliche at Crisis Text Line, but only because it’s absolutely true, and should be recognized and applauded, not ignored or berated.

Among the danger signs for someone who is at a high risk for suicide is whether they’ve formulated a plan, whether they have the means or access to carry out that plan, and especially if they have a time frame in mind (and that’s either within the next 24 hours or possibly on an anniversary of some event). Patients often have a full dispensary in their medicine cabinets, so for many, means and access might be a given. Nevertheless, the most important thing to know is whether the feelings of suicide are desires and ideation, or a concrete plan. If you or someone you care about has formulated a plan, then please reach out for help!

I’ve heard some people say that the worst thing a suicidal person can do is to call a crisis line because they will automatically call the police, or because they’ve heard counselor horror stories. What do you think about that advice?

Warning other people away from resources like crisis hotlines is not the answer. Period, full stop. I personally feel terrible for someone whose experience was so bad that they feel this way, and I wish I had been the one to talk to them. But whatever happened to one person is not going to happen to everyone who uses these services, and sometimes they are literally the line between life and death.

Counselors are only human, and although everyone gets the same training, not everyone is really going to understand about chronic illness. A counselor may get on the wrong track with you, or say the wrong thing. The important thing to remember is that a conversation is a two-way street; in other words, the counselor is not the boss. You don’t have an obligation to continue with a conversation that is unhelpful or even harmful to you.

There are a few things you can do if the conversation isn’t working for you. It can take a little time to develop a rapport with a counselor, either on the phone or via text, so try to work with them to make that happen first. As a counselor, I don’t want to say this, but as an advocate, I have to: you can always end the conversation without saying anything further. This is by far not the best way to handle it, but if you absolutely must, then you should. If possible, you can tell the person that you’re feeling sleepy or you have something to do and you have to go. You don’t have to elaborate.

If you feel that the conversation could be better if something changed, and you feel comfortable saying so, absolutely do so. For example, perhaps all you want to do is express your feelings but your counselor seems focused on finding some help for you. Or the opposite: you’d like some referrals to places that could help but the counselor is focusing on your feelings. You can say something like “Thanks for offering those websites but I really just want to vent,” or “I’m doing okay emotionally but I’d like some more practical help with [such-and-such].” A good counselor will be happy to oblige you in making your conversation as helpful as possible.

Crisis Text Line and other hotlines offer the option to fill out a short survey in which you can detail the problems. You can also contact any hotline outside of their emergency number (via their website, for example) to share your experience and what you feel went wrong. This is a very constructive way to actively help the organization improve. If the problem has to do with a poor understanding of chronic illness, by all means say so. It might even lead to a change in training on that topic, if necessary, so your negative experience can actually help others.

What should patients expect from their healthcare providers if they have suicidal thoughts?

Patients should be very careful about how they express themselves, for the reasons we’ve discussed. Not every physician is going to understand that “I feel suicidal” does not mean “I’m about to kill myself so please lock me up.” I wish I could say to be honest with all your providers about these things, but sadly that’s just not practical advice. If you can identify one of them who is likely to be supportive, it would be good for at least someone on your healthcare team to know that you’re experiencing these feelings.

When I talk to people who want to tell, say, a parent or a teacher about their feelings, I often encourage them to start by making it clear that they are not about to kill themselves and just want to discuss their feelings. Sometimes it’s even easier to write it all down rather than starting a conversation, because that way you have complete control over how the message comes out with no fear of getting interrupted or blindsided. It’s a bit ridiculous that suicidal people have to think about how to navigate other people’s feelings when they’re trying to get help, but it’s the safest way to avoid unwanted consequences as long as the stigma concerning the very word “suicide” still exists.

Do we talk about suicide enough/appropriately in the ME community? What needs to change?

I think in general, because we have lost so many of our friends and loved ones with ME to suicide, the topic gets discussed more openly and more often than in other communities. There’s a better understanding of the reasons why patients become desperate, for one thing, and personally I don’t see nearly as much moral or religious judgment as I have in other, non-illness-related forums.

However, there is one thing that absolutely needs to change if we are serious about wanting to attack the stigma in our community, and that is the secrecy that surrounds a patient’s suicide. Many people feel that it is up to the family to decide whether this information is shared with the public and that it is a matter of privacy. This means that nothing significant will change or improve for other patients. As long as suicide is still swept under the rug, expressed in euphemisms like “died suddenly,” and remains information that trickles down only to an inner circle, the conversation will remain stagnant. As long as people assume that it is this or that illness that was the cause of someone’s death and not suicide, other suicidal patients will retain the awareness that their feelings are something shameful that should not be discussed. However, if the community is allowed to know about it when a patient ends their own life, then and only then will we see the full force of what open, compassionate discussion can achieve. Whom are we protecting when we talk about “privacy”? Why is such privacy necessary when we know there is nothing wrong, evil, or indecent about the feelings that cause a patient to suicide – but that there is a great deal of danger when those feelings are covered or bottled up? I strongly believe it behooves those nearest and dearest to patients who have killed themselves to share their struggle with other patients in the hope of saving other lives.

What can caregivers do to help loved ones who have suicidal thoughts?

Years ago when I told my “CFS doc” that I thought I might be depressed, he said “It would be surprising if you weren’t.” I’m not sure he knew how validating that throwaway comment was. It told me that what I felt was normal — something patients very rarely hear!

So the best thing that caregivers can do is to normalize those thoughts. Hearing about suicide from a loved one may spur feelings of panic, loss of control, anger, and other negative emotions. Again: it is okay to feel these things. But it’s very important to do your best not to communicate them to the patient. Instead of saying, for example, “Don’t say that, I don’t want to hear that,” you might say, “That’s a scary thing for me to hear but I understand why you feel that way.”

Encourage discussion of those feelings. Not only are you helping your loved one at that moment, you’re also letting them know that you are a safe person to talk to if things ever do get worse. Too many times the negative reactions from friends and family cause people with suicidal feelings to pull away from them and no longer see them as a source of support. This fosters the isolation I mentioned earlier and makes it much less likely that the patient will reach out before they get to the point of hurting or killing themselves.

What is the best way to respond when a person expresses suicidal or desperate thoughts?

I’ll say it again: if someone mentions suicide or feeling suicidal, take it seriously and listen to them, but don’t make any assumptions about the level of danger they are in. I don’t want to oversimplify things, but there are some Do’s and Don’t’s:

  • Do encourage people to reach out to a crisis line to talk about their feelings.
  • Do empathize with the person, and ask what is troubling them the most.
  • Do honor the person’s request to keep a conversation private, unless you know for certain the person is going to end their life in the next 24 hours and intervention is literally the only hope.
  • Don’t use the word “committed,” as in “Are you thinking about committing suicide?”
  • Don’t bring religion into the discussion unless the patient brings it up first. If you must bring it up yourself – let’s say if you’re brainstorming people the patient might be able to turn to and want to know if they have a spiritual leader – use a neutral question like “Do you find religion helpful?” and if the answer is no, simply drop the topic.
  • Don’t make threats, like “if you keep talking like that I’m going to call the police.”
  • Don’t give them reasons to stay alive – talk to them about what their reasons to stay alive might be.
  • Don’t pile on the guilt; suicidal people are already buried by it.
  • Don’t problem-solve unless the patient is open to it. In other words, don’t jump on how to solve a particular problem that’s mentioned, just listen to it and offer your sympathy and empathy.

What do movies like Me Before You communicate to chronically ill/disabled people?

Me Before You is a story of a man who becomes paralyzed from the waist down in an accident, and ultimately kills himself so that his “life-affirming” girlfriend can inherit a bunch of money. It’s part of a proud Hollywood tradition of jerking tears out of characters who become disabled and then off themselves, or have someone do it for them as in Million Dollar Baby.

Here are some things we learn from this:

  1. Your loved ones are better off without you if you are not a perfect physical specimen.
  2. Your life is worth no more than a certain sum of money.
  3. There is no point continuing to live if you become unable to function exactly as you always have.
  4. It’s better to be dead than to be a hot rich white guy with a hot adoring girlfriend and a pair of legs that don’t work.

Hollywood loves these stories because they’re a form of inspiration porn, a term coined by disability activist Stella Young. (Please check out her TED Talk) It’s the way nondisabled people use disabled people to make themselves feel good, in a way that completely ignores or eliminates the disabled people’s identity and personhood. Admiring these “sacrifices” (a really disturbing term in this context if you think about it) is one way for nondisabled people to reject the presence of disability in society.

So besides the constant messages from family, friends, physicians, institutions, and the general public that we are burdens to society, Hollywood delivers a message of worthlessness on a regular basis. And unfortunately, when a movie does occasionally send a much better message, it’s not often done particularly well. Regarding Henry is the story of a man rebuilding his life after a serious brain injury, but it’s so coated in schmaltz and unsubtle moralizing that it’s hard to watch, despite a laudable message.

The best kind of inspiration is where it’s the disabled person in the spotlight doing amazing things for other disabled people, and not just existing to make the lives of nondisabled people happier. The movie Breathe is a good example of this.

Is there a difference between “right to die” decisions and suicide? How can we tell the difference?

There absolutely is and it’s extremely important. The two things have been conflated badly in all kinds of settings, from mainstream media (see the above discussion) to activism, and it’s another place where I see a lot of judgment about people’s opinions and personal decisions. There is an idea that any kind of right-to-die initiative is a slippery slope towards eugenics and the wholesale slaughter of disabled people.

Generally speaking, right-to-die decisions are made by patients who have received a terminal diagnosis. They are facing a slow, painful death in which they will lose their mental capacity and/or all control of bodily function. The places in the U.S. and other countries where this is legal do not simply say “yes, go right ahead, here’s the drugs you need.” There is a long process of physical and psychological examinations to determine that the patient is making a clear decision on their own that is not influenced by other people or a disordered cognitive process. The idea behind this is that the patient makes a conscious decision to die while they still remember who they are and who their loved ones are, and are not yet in such pain that they can no longer function. Hence “death with dignity.”

Some patients, without access to these programs or the desire or capacity to wait, take matters into their own hands. Robin Williams was facing a slow and horrible death due to Lewy body dementia (LBD), sort of a combination of Alzheimer’s and Parkinson’s. He chose to end his life before falling into the grip of the disease.

Everyone is entitled to their own views on these matters, as they are by no means black and white. For me, though, things change depending on whether the illness is chronic or terminal. I believe there is a difference between facing life with a painful, disabling, isolating illness and facing a sure and undignified death. I know that the two may feel like the same thing on some days. But there is still a difference between facing life and facing death. And the suicides by people with ME and similar conditions are a tragedy and loss that our community should not find acceptable or inspirational.

ME is not a terminal illness like cancer. That is not to say people don’t die from the complications it directly causes. But it’s not an automatic death sentence. Choosing to live with this illness is hard, really hard. Just opening your eyes every morning is an act of bravery. It doesn’t make your life cheap and worthy of tossing away, though; just the opposite. As a disabled patient and as a crisis counselor, I sadly respect the decisions that people like Robin Williams make in order to avoid completely losing their agency and personhood. But where life can continue, more than anything I believe it should continue.

The American Association of Suicidology put out a press release in November 2017 to distinguish between suicide, the prevention of which is within their purview, and physician aid-in-dying, which is not. Dr. Margaret Battin, Distinguished Professor of Philosophy and Adjunct Professor of Internal Medicine, Division of Medical Ethics, at the University of Utah, says the following: “Many factors create a clear distinction between the two phenomena, including intention, absence of physical self-violence, the physician’s assessment that the patient’s choice is not distorted by mental illness, a personal view of self-preservation versus self-destruction, and by the fact that the person who has requested aid in dying does not typically die alone and in despair, but, most frequently, where they wish, at home, with the comfort of his or her family.”

How can we better address the problem of suicide and/or the desperation that can come with ME?

In general, the things that I’ve mentioned regarding how to support anyone with a serious chronic illness and suicidal feelings should apply. Caretakers and other people in the patient’s life should be less ready to assume the worst, and more open to hearing what the patient has to say. Patients should try to respect themselves and their own feelings regardless of what negative messages they receive (from others or even themselves).

ME is a special case, though, in my opinion. People with other illnesses like cancer or lupus don’t go through the extra stress that comes with having an illness many people, including physicians, have either not heard of, don’t believe in, or have wildly incorrect views about. As an MS patient, I’ve never been told my brain lesions are the result of my own laziness, or that losing weight will get rid of them. I’ve never been blown off as merely depressed, and when I talk about my symptoms they aren’t ascribed to things like the weather changing.

People with ME struggle with another stigma, that of their own illness. There’s the long history of funds supposed to go to research being misused (or not showing up at all), not to mention scams and bad science like the XMRV fiasco which cost patients thousands of dollars that lined researchers’ pockets. There is a total lack of respect for the illness and for the patients who suffer terribly from it, at every level from institutional to individual. Patients are endlessly made fun of, ignored, mocked, blown off, misdiagnosed, and shunted aside, by research institutions, researchers, physicians, psychologists, parents, friends, and the general public.

Since I was diagnosed with MS, I’ve been on a DMT (disease-modifying therapy) that halts the progression of the illness. People with ME have no such light at the end of their tunnel currently. I believe this is why the community sees such a devastating number of suicides compared with other illness communities. And where are these patients supposed to turn, when all those people I mentioned above don’t even believe they’re really ill? Or when there’s so much dissent and aggression in the community itself that patients don’t feel comfortable talking about their personal problems even with other patients?

I wish I had an answer other than the one that patients have been working on for decades: to legitimize ME across the board in medicine. I wish I had a better answer as to how to do that than all the people who have devoted their lives – some of them devastatingly short – to making this happen. And I wish I could see things getting better for patients before this takes place…but I don’t. Until ME patients are treated with the care and respect they deserve, that anyone else as sick as they are receives, those extra feelings of desperation and pointlessness will continue to plague the community.

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Crisis and Suicide

Posted on November 5, 2017 by Jennie Spotila

The list of people with ME who have taken their own lives is too long.

Fortunately, there is help available for anyone in crisis, and their loved ones. There are many issues to discuss about suicide and end of life, but I want to give you the tools and information you need to deal with a crisis right now.

Johanna Haban has been disabled by a number of chronic illnesses over the years, including ME. She currently volunteers with Crisis Text Line and has experience on phone lines as well. She shared her perspective with me, to pass on to you. Johanna’s opinions and suggestions are her own and do not represent those of Crisis Text Line, San Francisco Suicide Prevention, or any other organization. She is not writing as an official representative of any organization. If you are in crisis and seeking help, please see the list of resources below.

Who can I call if I am feeling emotionally overwhelmed, thinking about suicide, or am worried about someone I love?

What happens when I call?

The goal of counselors on crisis lines is to help you cope with how you are feeling, and help you figure out what (if anything) you can do for help. Calls are confidential, and you decide how much information to share with the counselors. You do not have to be suicidal to call.

Will a crisis line report me to the authorities?

Many people are scared to contact a help line because they are worried about the police coming or being committed to a psych ward. These are very understandable fears and I hope I can ease them. Unlike the rest of the world, even including close friends and loved ones, hotlines are a completely safe space to talk about suicide and suicidal feelings. There is no judgment, there are no assumptions, you can say how you feel without anybody getting scared or worried.

Counselors may notify authorities if someone is in immediate risk of killing themselves and all other attempts to help the person have been exhausted. The signs of immediate danger are whether the caller has formulated a plan, whether they have the means or access to carry out that plan, and especially if they have a time frame in mind.

However, even if the signs are all there, on the two hotlines where I have worked, it’s still not any guarantee that authorities will be notified. Believe me, nobody wants to do that! It is a very last resort when a person in crisis is going ahead with their plan and there’s nothing else that can be done, and additionally supervisors and other people in charge need to be notified and informed first so that they can make the decision to send out the authorities.

In other words, you can express whatever feelings you need to express, no matter how bad or scary they are, without fear that someone will assume you need to go to the hospital. In fact, if you don’t feel like you’re in immediate (as in the next hour or so) danger of hurting yourself, and you just really need to talk to someone about these feelings, you can even let your counselor know that and be extra assured that you will be supported emotionally without any fear of negative consequences. This is just a suggestion, though; if you aren’t able to express that, it doesn’t mean you’re more likely to have the police come to your house. It just means that during your conversation, your counselor will still be making sure that you are able to stay safe.

Will a crisis line counselor understand what it’s like to have ME or other serious diseases?

Many of the people I’ve spoken or texted with as a counselor have at least one chronic physical illness, sometimes more and sometimes exacerbated by mental illnesses. It’s common for people coping with illness to feel emotionally overwhelmed, and that’s what counselors are trained to deal with.

When I was working on the hotline, I once took a call from a person who was suffering from chronic illness and a number of other exacerbating issues. They told me repeatedly, “I can’t take it anymore. I don’t want to live like this.” But when I asked “Are you suicidal?”, the response was a shocked “No! I’d never do that!” This was the first time I encountered someone who sounded intent on suicide, but really just wanted someone to hear how much pain they were in. This is one of the most important lessons I can share with you.

When you’re experiencing a morass of such unutterably painful things, it’s entirely natural to want that to end, and if it can’t, then to think about ending your life to make it stop. Even if you never have the slightest intention of doing it, at times the notion can be powerfully comforting. And here’s the part nobody wants to tell you: that’s okay! You are allowed to feel that way. One of the worst things about having suicidal thoughts is the guilt that accompanies them. It’s good, in a way, to feel guilty about leaving people behind if you were to kill yourself, because that would indeed be devastating. But there’s no need to feel guilty just because you’re thinking about it. It’s okay to feel the way we feel, as long as we reach out if those feelings become more like plans and decisions.

My friend/loved one is saying things like “I want to die.” What should I do?

Say something like: “I hear you. I don’t blame you at all. I completely understand why you feel that way. Did something happen recently to make things worse? Tell me what’s the most unbearable thing for you right now.”

Don’t make threats, like “if you keep talking like that I’m going to call the police.” Don’t give them reasons to stay alive – talk to them about what their reasons to stay alive might be. Don’t pile on the guilt; suicidal people are already buried by it. If they ask you to keep the conversation private, do not break that trust unless you know for certain the person is going to end their life in the next 24 hours and intervention is literally the only hope. The idea is to make sure the person knows they can come to you with these scary thoughts and you won’t make things worse for them.

Don’t problem-solve unless the patient is open to it. In other words, don’t jump on how to solve a particular problem that’s mentioned, just listen to it and offer your sympathy and empathy. If, however, the patient is open to seeking solutions, by all means work with them to find what you can.

And if you are unsure what to do or feeling overwhelmed by your loved one’s pain, you are welcome to call a crisis line for help in sorting through it.

 

One last thought from Jennie: People with ME endure a great deal, and many feel abandoned or isolated. If you or a friend with ME feel overwhelmed, please reach out for help. We need to look out for each other!

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The Truth Is Not Always Nice

Posted on November 1, 2017 by Jennie Spotila

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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