A Million More, and Counting

Posted on May 12, 2022 by Jennie Spotila

Today is #MillionsMissing, a worldwide day of protest and awareness for the millions of people missing from their lives due to ME. We raise our voices on behalf of our own community, and also on behalf of our compatriots with Long COVID.

For six years, the ME community has joined together for #MillionsMissing to speak with a united voice–demanding health equity through research, treatment, and support. More than one million Americans have ME. #MEAction estimates that 75% of us are unable to work, and 25% of us are homebound or bedridden.

To this tally, we now add Long COVID. The US Government Accounting Office estimates that 23 million Americans have Long COVID, and one million of them are unable to work.

We are in the midst of a mass disabling event.

Yet this is not the end of the accounting. We cannot ignore that one million Americans have now died of COVID, leaving at least nine million people to grieve. More than 200,000 children have lost a caregiver to COVID.

When I write these numbers out like this, it feels clinical and unreal. Abstract numbers on a spreadsheet. But if I think about what ME has done to my life and to my family, and then try to multiply it by one million, and then add another million or more–when I think about suffering on that scale, I feel despair.

In COVID, I see ME writ large–both the suffering and the turning away. Everything the ME community has endured is now the Long COVID experience. The disinterest, callousness, and denial that we have received from institutions and people in power has gone full scale. Our public health system failed to heed our warnings about Long COVID. Our country has decided we no longer need to protect one another from COVID, and the suffering is compounded and then compounded again.

Will there be a reckoning? Can we ever come to grips with what we have done to each other–to our healthcare workers, our children, our marginalized communities? Even if we can somehow count the cost, could we ever pay that bill?

It is so easy to witness the suffering and our failures, and stop there. Grief is heavy, and it is tempting to sit still with its weight. Yet people with ME have always fought. We raised the alarm about post-infection illness from the first days of the pandemic, and we have extended our knowledge and support to the Long COVID community.

We are–all of us–connected.

The ME community has sought justice and health equity for decades. We have achieved so much, but we are still far from our goals. A drippy faucet gets little attention, but a flood requires a full response. One million people with ME has not been enough, but when we raise our voices with millions of long haulers, maybe now we will be.

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Ten Years of Unreal Time

Posted on February 12, 2022 by Jennie Spotila

Ten years ago today, I tapped the internet microphone and published the very first post on this blog, then known as Occupy CFS. My intention was to step into the light, to bring attention to the disease by writing openly about my own experiences, as well as the politics of our movement. Hundreds of posts later, I can say that I have done my utmost to achieve that goal.

There is something odd about the passage of so much time, though. Since the pandemic began, people have joked that time has no real meaning any more, but I have felt that way for more than a decade. I have few exterior milestones to mark time–no job changes or growing children. Where I live, late fall through early spring looks exactly the same when viewed through a window. Sometimes, I can’t remember what month it is.

Ten years feels like an interminable and unchanging tunnel of days, each one like the one before and the one after. Living housebound with chronic illness is a grind, and it has worn me down, much the way that centuries of footsteps wear down the stone steps of a cathedral. Yet so much has happened in the last ten years that it also feels like the time has passed in a few blinks. I’m always a tiny bit surprised when I remember my age–how did that happen?

If I had made predictions ten years ago, I would have said that I would still be sick today and that ME would still be grossly under-recognized and underfunded. Those outcomes were easy to anticipate and have proven true. Other predictions would have been wildly off base. Ten years ago, I had no intention of writing a memoir. I never could have guessed that my husband would become disabled, too, nor the ways that grief and loss would change my life.

I have always been a self-starting, goal-oriented person. I don’t wait to see what happens; I chase desired outcomes. This blog and my advocacy are a manifestation of my drive and determination, and I have pursued both at great personal cost. What’s odd about where I am now is that I don’t have much of a plan. I’m working as much as possible on my book, but I don’t know if it will ever see the light of day or how I can make that happen. I can’t begin to guess what might happen in my life or in ME advocacy over the next ten years.

Pierre Teilhard de Chardin wrote a beautiful poem called Patient Trust that captures this feeling I have of being in between:

We are quite naturally impatient in everything
to reach the end without delay.
We should like to skip the intermediate stages.
We are impatient of being on the way to something
unknown, something new.
And yet it is the law of all progress
that it is made by passing through
some stages of instability–
and that it may take a very long time.

ME advocacy has been irrevocably changed by the pandemic and Long COVID. Perhaps we are closer to treatments, or at least greater research investment. It is too early to say. And perhaps I will finish my book. Perhaps you will read it. It is too early to say. Progress takes time.

I didn’t start this blog with an end goal or timeline in mind. I just wanted to speak loud enough to be heard so that I could make a contribution to our fight, and I hope I have succeeded. As much as we have accomplished in the last ten years, there is more work to do. I’m here for it, for as long as it takes–even if I’m not quite sure what that will look like.

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Pandemic Low

Posted on January 18, 2022 by Jennie Spotila

I hit a new pandemic low last week. CDC Director Walensky’s comments about the “encouraging” news that most vaccinated people dying of COVID had multiple comorbidities was the catalyst (see my op ed in the Philadelphia Inquirer), but my despair has been deepening for some time.

Hospitals are breaking. Schools can’t function. Services and business are disrupted. There are shortages in stores again. People we know are getting sick. COVID is blazing through, spreading more wildly than ever before. In many ways, this looks like the worst case scenario that we were all so frightened of in March 2020.

Except most people aren’t scared anymore. Everyone seems to be shrugging their shoulders and giving up hope that we can control this pandemic. “We’ll all get it,” they say, and risk death and disability with casual disregard for the consequences. Our callous treatment of the healthcare workers who must still nurse us through those consequences is appalling. Vaccines are keeping many people out of the hospital and alive, but there’s no comfort in saying that a disaster could be worse.

One of the root causes of our current situation is the individualizing of the pandemic. Mask wearing, social distancing, vaccination–there are no mandates for the general population anymore, just under certain circumstances. We have relegated public health measures to individual choice, opening the door to misinformation and conspiracy theories, and silently giving people permission to be selfish or myopic in making those choices.

The belief that vaccinated people would be fine drove the early end of CDC’s masking recommendations last May. Not only was this overconfidence, but it placed emphasis on the individual’s choice to vaccinate over and above masking’s role in reducing the spread of infection. Policymakers lost sight of the benefit of layering protection. By making it about individual choice, we set aside collective and community-level thinking.

You might think your vaccination or mask choice is just about you and your family, but it’s not. It’s about every single person you come into contact with every single day. If you are infected (which is possible even if you are vaccinated) then you could be passing the infection to anyone in your path (although wearing a mask would lower that risk). Other people could be vaccinated and masked and still catch the virus from you, particularly if you are not taking steps to prevent passing it along.

How many of the people you come into contact with are vulnerable or high risk in some way? You can’t look at a person and know if they have diabetes or cancer or autoimmune disease. Your coworker might have high blood pressure, and you would never know. What about the family members of people you interact with? It’s impossible for you to know that the teenager you sat next to on the bus lives with elderly grandparents, or that the clerk at the convenience store has a child with cystic fibrosis. Yet your behavior and choices place all of them at risk.

No one is safe until everyone is safe. That’s not a hyperbolic slogan. It’s science. But we’re not thinking about it that way. Whatever collective motivation we had to flatten the curve two years ago is gone now. People have decided they’re “done” with the pandemic–as if what we want has anything at all to do with it. Our government and public health apparatus has completely failed to remind people that public health requires action from everyone.

Public health measures, which should be about science, have become politicized hot potatoes. We’re fighting about whether to mandate masks or vaccines, instead of coming together to fight the virus. COVID is never going away. We do have to find ways to live with it. What I don’t understand is why living with it can’t include minimizing disease and transmission. Why can’t we take steps to protect one another from the worst impacts of COVID? We live together in a community, with a social contract. Why doesn’t that social contract mean that we do what is necessary to limit the damage of this historic pandemic?

I don’t want division, but we are divided. Some of the people I love are not vaccinated. I love them just as much, and I don’t want to be separated from them. Yet in order to protect my own life, I cannot spend time indoors with these dear ones. Their choice to forego vaccination has taken my choice to interact with them. They have made that choice for me.

I want this pandemic to be over. I want to leave my house again without wondering how many infected people are crossing my path. I want to interact with my friends and community again. But America has decided that the individual choice to forego precautions is more valuable than my safety. I don’t understand how that calculation balances out.

I know I’m not alone in wearing despair that cloaks my rage. Read what people are saying, like Amil Niazi, a parent of children under five, who writes, “I’m angry, sad, frustrated, obliterated, abandoned, but more than that and worst of all, I feel nothing.” Read these powerful words from disability justice advocate Mia Mingus:

You are not entitled to our deaths. You are not entitled to the deaths of our loved ones in the name of capital, privilege and “normal.” You are not entitled to our silence about our pain and suffering and the wet tar grief that envelops us. You are not entitled to our fear and terror at the worsening conditions and chaos of this pandemic, wondering if we will ever be able to safely leave our homes again.

The effects of this pandemic will stretch years into the future, and many books will be written about it. There will be many reckonings at all levels of public life, and continued grief in individual lives. But one thing I don’t think most people realize is that there will be a reckoning over whose lives and choices were valued, and whose lives and choices were tossed aside.

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My Favorite Books of 2021

Posted on December 31, 2021 by Jennie Spotila

I have always loved books, and now that I am writing one myself, I love them even more. I read for entertainment and education, and I pick them apart to see what makes them work (or not). There is nothing like the feeling of falling through the page into the world of the story. And make no mistake, all books are about Story in some way. Even an instructional manual creates a story in your mind. For me, the best books immerse me in Story and make me feel something, especially strength (either my own or the author/character’s). Here are my favorite books that I read in 2021.

Memoir

A Still Life by Josie George: I loved this book so much I reviewed it here on the blog. Josie’s memoir of her life with chronic illness is gorgeously written, but it is Josie’s strength that takes my breath away. She has created tremendous beauty and meaning in her life, working within her body’s limitations, and tells her story with intention and grace. I cannot recommend this book highly enough.

When Breath Becomes Air by Paul Kalanithi: This memoir was a Pulitzer finalist in 2016 and makes most “Best Memoir” lists. Dr. Kalanithi wrote this book while he was in treatment for stage IV lung cancer, and he died before he could finish it. It is a memoir of a life interrupted by catastrophic illness, and of enduring love. I sobbed through the last few chapters.

No Cure for Being Human by Kate Bowler: This is Bowler’s second memoir of facing the prospect of death from stage IV colon cancer before age 40. Like her first book, Everything Happens for a Reason: And Other Lies I’ve Loved, Bowler combines stark honesty and witty humor to carry the reader through her experiences. Her tremendous love, commitment to her work, and Christian faith form the bedrock of her life, and her strength is inspirational in all the best ways. Bonus: Bowler also has a podcast, Everything Happens, in which she interviews fascinating people like Stanley Tucci, Gretchen Rubin, and Jenny Lawson.

Fiction

The Last Graduate by Naomi Novik: This is book two from the Scholomance Trilogy, and every bit as good as the first book. It’s got teenagers with magical talents, and an infinite variety of monsters trying to eat them, at a school on the boundaries of reality. Think Harry Potter meets the Hunger Games. Suspenseful, clever, and funny.

A Spindle Splintered by Alix E. Harrow: I will read anything by Harrow, and The Ten Thousand Doors of January remains one of my favorite books of all time. A Spindle Splintered is a feminist reimagining of the legend of Sleeping Beauty, with Harrow’s characteristic wit. My only complaint is that it is too short.

Rivers of London series by Ben Aaronovitch: There are eight books in this series so far, and the ninth is due next spring. A constable in London learns that not only is magic real and that he has magical talent, but that there is a Metropolitan Police unit dedicated to handling “weird bollocks.” These novels are fun, light mysteries with a sense of humor.

The Book of Accidents by Chuck Wendig: I read this book despite its classification as Horror because I’m a fan of Chuck Wendig’s other work. I haven’t read much horror since my teens, and that was mostly Stephen King. But this book checked a lot of boxes for me: rural Pennsylvania; owls; alternate realities; strong kids; powerful family bonds; mystery. It is gripping, creepy, and it really sticks the landing.

Razorblade Tears by S.A. Cosby: What I love most about this book is the seamless way Cosby combines the thriller plot with an examination of social issues. Many authors don’t do this well, but Cosby is a master. Two fathers, one white and one black, seek vigilante justice for their murdered sons, even though neither of them had accepted their sons’ marriage. The plot is fast and tense, and be warned–it is violent and bloody. Throughout, the two fathers have to confront racism and homophobia in themselves and others. It is an unexpectedly moving thriller.

My Heart Is A Chainsaw by Stephen Graham Jones: Let me state up-front that this book is gory and violent, and it is also one of the best books I read this year. I’ve been a fan of Graham Jones since reading The Only Good Indians, one of my favorites from last year. In Chainsaw, a teenage girl copes with her problems through her obsession with slasher films. She becomes convinced that a serial killer is active in her small town, but no one will listen to her. Is she a reliable narrator or a troubled teen? Horror films and novels frequently glorify violence for shock value, but Chainsaw interrogates and transcends the tropes of slasher films to tell the story of this strong female protagonist in a gripping narrative that I could not put down.

Reading Tech

I also want to mention a few things that made my reading life more enjoyable this year:

  • When I am physically unable to hold a book or e-reader because I’m crashed or in too much pain, the Book Seat holds it for me.
  • The Reading Glasses podcast is an entertaining discussion about reading and the reading life, and I found some great books this way.
  • I stan for libraries, and during the pandemic I have borrowed more e-books to avoid physically going to the library. Check if your library offers e-books through the Libby app or some other way.
  • And speaking of libraries, did you know that you can get library cards for some major libraries even if you don’t live in the library’s location? Any resident of Pennsylvania can get a library card from the Philadelphia Free Library, giving you access to their e-book collection and online resources. I know, right? Check the major libraries in your state for their policies.
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Community Gratitude

Posted on November 25, 2021 by Jennie Spotila

Talking about gratitude on Thanksgiving Day (in the U.S.) is cliche, I know. But I have to chime in because this year, I am feeling overwhelming gratitude for my communities.

I have been blessed in my family and friends for my entire life. My family is wacky in its own unique way, but it is a soft and safe place to land, and my in-laws have always welcomed me as one of their own. My husband is everything.

Friends have filled my life. A. has known me the longest, since we were neighbors in our freshman dorm at college. K. and I have been as close as sisters since the day she sat down and introduced herself before our Criminal Law class. And T.–well, I have only spent one day with her face to face but she is as dear to me as any member of my family.

Another friend from my pre-ME life is T., who was in the law firm trenches with me. After I got sick, I thought I would not be able to make new friends ever again, but I was 100% wrong. There is M., who I cold-called when fundraising and we ended up talking for hours. And J., who is practically my twin. We have only met in person once, but she is family. D. reached out to me on the suggestion of a third person, and became a fixture in my life. There are still more, and I don’t want to leave anyone out. I am surrounded by women who I trust with my life. I don’t have one best friend; I have many.

The ME community is another blessing. This past year in particular the ME community has shown up for each other and for people with Long Covid. I hesitate to list individuals, but there are two people I need to mention. Jaime Selzer is killing it, along with the entire #MEAction leadership team. Mina Jenkins is a cornerstone of advocacy, calmly speaking truth to power for longer than I have been sick. The Long Covid community has been a true ally to people with ME, promoting science in our field and reaching back to include us on their platform. I am deeply impressed with and grateful for the work they’ve done.

I am grateful for another community that has become a powerful presence in my life in the last year. The Autonomous Creative Collective has transformed my writing practice. To the extent I have made progress on my book, it is in large part due to what I am learning there. I am especially grateful to my small co-working group. I didn’t think co-working would mesh very well with my limitations, but this fabulous group of people have supported and encouraged me in ways I did not know I needed.

Living with ME is lonely. The pandemic shutdowns that freaked everyone out were just mini versions of what we deal with all the time. My life has been enriched by all of my people. I am happy–despite being sick, housebound, and disabled–and that happiness is largely thanks to all the people who love me. I am forever, deeply grateful that you are in my life.

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Do We Ever Stop Counting?

Posted on October 6, 2021 by Jennie Spotila

I have been sick for twenty-seven years, today.

My sickaversary gives rise to different feelings every year. Burdened. Triumphant. Heartsick. Contented.

Marking the day, here with you or on my own, feels important. October 6th is the day my life changed forever. It is as significant to me as the day I met my husband, as the day my mother died. This day was a turning point in my life.

So many others have their own sickaversaries, and my heart is with them too. Friends with ME who have been sick longer than 27 years. Those with Long COVID who have passed their first sickaversary, or who see it coming at them fast. We feel trapped in amber, always looking for a way out.

The anniversary effect or anniversary reaction is a recognized aspect of trauma. Dates associated with losing a loved one, experiencing a natural disaster, or any other traumatic event can have an impact on us even many years later. Gentle self-care and support from others can help us get through it. There’s no official duration of the anniversary effect, though. It might hit us every year forever, or just a couple years, or sporadically over time. Grief is a wave, and sometimes we just have to surf it.

Yet, it is a hard and heavy thing, carrying a day like this around. When I woke up yesterday, I found myself wondering if I could put it down. Could I stop counting?

When does the Day I Got Sick become just another day? Is there a point where my Sick Life becomes just . . . my life?

Maybe that point exists for me, but it is not today. I was twenty-six years old on the day I got sick, twenty-seven years ago. I have now spent more than half my life with ME. With each passing year, the healthy portion of my life will shrink further and further away.

Maybe there is a day when I will stop counting. But not today. Not today.

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The Coding Problem: Why No American Can Develop ME/CFS, Including After COVID

Posted on September 16, 2021 by Jennie Spotila

Guest post by Mary Dimmock

Please sign this petition to fix the coding problem making Americans with ME/CFS invisible.

If a tree falls in the forest, does it make a sound? And if an American develops ME/CFS, would the US disease mortality and morbidity tracking systems know about it? Philosophers make debate the first question but the answer to the second one is decidedly NO.

As far as US disease tracking systems are concerned, the 1 – 2.5 million Americans with ME/CFS are invisible. You can’t die of ME/CFS in the US. You won’t experience any morbidity (suffering, impairment) from ME/CFS. And you certainly won’t develop ME/CFS following an acute COVID-19 infection, in spite of the remarkable similarities noted by many researchers, including NIH’s Dr. Anthony Fauci.

That’s because the US ICD codes used to track diseases do not include a code for the term ME/CFS, the name adopted by US federal agencies and in clinical guidance. At the same time, the term “chronic fatigue syndrome,” the term most often used by US doctors, has been assigned the same ICD code as the symptom of “chronic fatigue, unspecified.”

As a result, virtually all cases of ME/CFS are effectively lost in a bucket of unspecified chronic fatigue due to any cause.

These ICD codes, short for the International Classification of Diseases, are maintained by the World Health Organization (WHO) as a globally agreed classification system to support tracking of diseases across countries. ICD codes are used to track disease mortality and morbidity and to assess disease burden and healthcare utilization and cost. In the US, they are used in insurance billing. They show up in electronic health records and are used to research issues such as the causes and long term impact of diseases. NIH and CDC have both announced extensive plans to use electronic health records to do exactly that kind of research into Long COVID.

But as CDC reported at a recent conference, ICD codes alone are not sufficient to find the cases of ME/CFS in these electronic health records. Doing that required an expensive and time consuming manual chart review. Such manual reviews are unlikely to be done in reporting on mortality and morbidity or in most research using electronic health records. This includes those planned Long COVID studies. The obvious impact on Americans with ME/CFS is huge.

How is this possible and why has it never been fixed?

In WHO’s current ICD, the ICD-10, ME and CFS are classified in the neurological chapter. The WHO also allows countries to create their own versions as long as they follow WHO standards. When the US implemented its version, the ICD-10-CM, in 2015, it reclassified CFS from the neurological chapter to the Symptoms and Signs chapter and gave it the same code as the symptom of “chronic fatigue, unspecified.” This is not aligned with the WHO classification and no other country has done this, making it a uniquely US problem.

Proposals to fix this were submitted in 2011, 2012, and 2018 to CDC’s National Center for Health Statistics (NCHS), the US group that manages the ICD-10-CM. But NCHS rejected each of those proposals because of a lack of stakeholder consensus, including from patients and coding associations, on how to fix the problem. As a result, cases of ME/CFS are still coded as “chronic fatigue, unspecified.”

This year, seven ME/CFS organizations* submitted a fourth proposal, asking for the most basic change to move this forward–to add the term ME/CFS to the ICD-10-CM and support both viral and nonviral triggers for the disease. NCHS then added additional coding changes, including some that were previously rejected.

This situation is such a gordian knot that no single set of recommendations can possibly address all stakeholder concerns. But the status quo is completely unacceptable because it leaves those with M<E/CFS invisible–not coded, not counted, not researched.

For the sake of the 1 – 2.5 million Americans who had ME/CFS before the pandemic and for the sake of those who could develop ME/CFS following COVID-19, we must find a way to resolve this problem. Continuing to lose track of people with ME/CFS in US medical records, tracking systems, and research is simply not an option.

Please sign this petition calling on the US to fix its ME/CFS coding problem. Background on the ICD and why this is important are available on the petition site.

Thanks to Dr. Robert K. Naviaux, University of California, San Diego (UCSD), CA for the idea for the title.

*The organizations submitting this proposal were: The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, #MEAction, Open Medicine Foundation, Solve M.E., Massachusetts ME/CFS & FM Association, the Minnesota ME/CFS Alliance, Pandora Org.

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Not NICE

Posted on August 23, 2021 by Jennie Spotila

Last week, the ME community was expecting the National Institute for Health and Care Excellence (NICE) in the UK to publish new guidelines for the treatment of people with ME/CFS. Based on the draft guidelines published in November 2020, it was anticipated that the guidelines would reverse its 2007 recommendation of graded exercise therapy and cognitive behavioral therapy as treatments of the disease.

Less than twelve hours before the scheduled publication of the final guidelines, NICE announced it was pausing publication for an unspecified amount of time. The reason? Push back from the UK organizations that continue to cling to these therapies despite the clear scientific evidence that they do not work.

I won’t recap all the details of the decision and the fallout. I recommend these excellent articles from David Tuller, Tuller and Steven Lubet, Valerie Eliot Smith, and #MEAction. Instead, I want to speak to the impact of NICE’s decision on people with ME.

People with ME were unanimously horrified by NICE’s insupportable change of plan. Some people immediately went into advocacy mode, both individually and collectively. For others, this pause in publication felt like a dangerous defeat.

The old NICE guidelines, which support GET and CBT, have undoubtedly caused harm to people with ME. Allowing those guidelines to stand for even one extra day–despite the clear evidence that they are harmful and do not work–represents a danger to people with ME. NICE’s cowardly capitulation to the groups with a vested interest in perpetuating the old guidelines is a direct attack on us, the people who will continue to be advised to take these harmful treatments. I understand why people may have felt despair, in addition to righteous anger.

Do not give in to that despair. Do not fear that the old NICE guidelines will stand forever. Do not feel like we will always be at the mercy of people who have been left behind by the science but still hold the microphone.

I have been an advocate for more than twenty years. In that time, I have seen the CDC abandon its longstanding recommendation for GET and CBT. So has the Agency for Healthcare Research and Quality in the United States. Many scientists have asked for an independent review of the PACE trial’s conclusion that GET and CBT work, despite what the data actually show. The National Academy of Medicine recognized that post-exertional malaise is a central feature of the disease (an outcome I personally did not expect).

The pause in NICE’s publication is a temporary setback, and it is evidence of how determined the psychosocial school is to maintain its status quo. We can and should oppose this pause and support immediate publication of the guidelines. We must provide public accountability if there is any interference in what NICE itself says was a rigorous process.

The tide will continue its turn. GET and CBT are on the way out because there is no scientific basis for continuing to use them.

Take care of yourself and each other during this upheaval. We will prevail. If you have capacity to speak out or support those who do, then please do. If you cannot, if you need a break or a rest, then please take care. Progress comes too slowly, and there are always setbacks. It is frustrating. We move forward, ever forward together.

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The 2020 NIH Funding Fact Check

Posted on August 9, 2021 by Jennie Spotila

It is time, once again, for my annual NIH funding fact check. And, once again, NIH’s numbers do not add up. NIH claims to have spent $15 million on ME/CFS research in 2020. In reality, NIH spent slightly under $13 million.

Every year, NIH publishes its internal calculation of how much it spent on research in over 200 categories. These numbers are generally accepted as accurate and authoritative by Congress and the public alike. Over the years, however, I have found that the reported amount for ME/CFS does not stand up to closer examination as can be seen in this graph.

Data analysis by Jennie Spotila 2021

The trend continued in 2020. NIH claims that it spent $14.6 million in 2020, but this includes an extra $1.9 million that was not spent on ME/CFS research. The problem, as it has been for several years, is the amount NIH counts in intramural spending.

Intramural funding stays within NIH for research. There are almost 6,000 scientists at NIH and approximately 10% of NIH’s total budget supports their work. NIH’s intramural research related to ME/CFS was quite small for many years. Before 2017, intramural spending on ME/CFS was far less than 10% of the total spending.

However, in 2017 Dr. Avindra Nath’s ME/CFS Clinical Study began bringing subjects to NIH for extensive inpatient testing. Some of that testing was provided by other labs, such as the Human Energy and Body Weight Regulation Core and a lab studying Pathophysiology of Involuntary Movements and Volitional Disorders. NIH started counting the funding for these entire projects as ME/CFS spending, even though only a very small portion of the lab’s work was on ME/CFS.

The source of the problem seems to be NIH’s internal accounting process, as I explained last year. Intramural labs do not always receive funding earmarked to individual diseases or projects. The labs are also not required to track and report the way resources were allocated across projects. When NIH compiles the data for its Categorical Spending Chart, the full amount of funding to a lab is included in multiple categories even if the money was actually divided among multiple diseases.

As a result of this lack of rigor and specificity, NIH has included large amounts of funding in its ME/CFS number that were never spent on ME/CFS research. In 2019, the unrelated spending was close to $2 million for a study of involuntary movement disorders. Similar unrelated spending was included in 2018 and 2017. Last year, Dr. Vicky Whittemore assured me she was working with the staff who code studies for Reporter to try and fix this overestimate.

No unrelated intramural labs or studies were included in NIH’s calculation for 2020, so superficially it appears the problem was fixed. However, Reporter loaded on extra money in a different and less transparent way by using indirect costs.

In 2018 and 2019, Dr. Nath’s study received $750,000. But in 2020, NIH reports that Dr. Nath received an eye-popping $2.6 million–more than three times what he received in 2019. This huge jump in funding was especially surprising because pandemic restrictions interrupted Dr. Nath’s ability to bring study participants on site for extensive testing.

I asked Dr. Nath how the extra $1.9 million in funding was used, and he told me that he only received $750,000. Next I contacted Dr. Vicky Whittemore, and she told me that the excess $1.9 million added to Dr. Nath’s grant represented indirect costs for use of the Clinical Center facilities. The funding page for Nath’s study does not break the funding down into direct and indirect costs, as pages for many other studies do. This creates the appearance that Dr. Nath received far more money for the ME/CFS study than he actually did.  

Perhaps it is a coincidence, but the excess amount on Dr. Nath’s grant is very similar to the excess amounts associated with the unrelated studies in 2017 through 2019, as I have previously reported. When I inquired, neither Dr. Nath nor Dr. Whittemore could tell me if the full $1.9 million of indirect costs were related to the ME/CFS study or to Dr. Nath’s many other studies. Furthermore, these indirect costs have never been charged to the ME/CFS study in previous years, and it’s unclear why the staff at Reporter changed the allocation in 2020.

The big problem is that adding those indirect costs to Nath’s ME/CFS study artificially inflates NIH’s ME/CFS funding number by almost $2 million. Once again, the picture of ME/CFS funding at NIH looks much better than reality.

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#MillionsMissing Book Review: A Still Life

Posted on May 12, 2021 by Jennie Spotila

Today is #MillionsMissing, a day to raise awareness and make people with ME visible to the world. As part of the event, people with ME are sharing their stories on social media but instead of sharing mine I’m going to tell you about someone else’s story.

Josie George published her memoir A Still Life earlier this year. I’ve followed Josie’s writing in various forms for years, and she is extraordinarily gifted. In the book, Josie tells the story of her life as a disabled woman and the ways her illness has shaped and defined her. But this is not a typical illness memoir, in part because Josie is not a typical writer (if that even exists). A Still Life is both vulnerable and strong, and so beautiful that it took my breath away. #MillionsMissing is about being visible, and Josie’s book is a gorgeous contribution to that goal.

Josie has been sick since childhood and her illness has never been definitively diagnosed, although it’s been named as ME, POTS, and various functional disorders. She writes, “What I experience has been called many things over the years by different doctors at different times, depending on their specialty, what tests they run, and how they view bodies like mine.” Over the course of her life, this has been a source of shame and confusion for Josie, and in the end she has managed on her own like most people with ME must do.

A Still Life is a single narrative made of two different strands, told in small bites back and forth. One strand follows Josie as she grows up, marries and has a son, then moves on from the marriage, always coping with a relapsing and remitting course of illness that interrupts her life for years at a time. The other strand follows her through the year 2018 as she experiences the heartbreak and beauty of her quiet life and the unexpected joy of falling in love. Josie somehow manages to ply these two timelines together in a way that feels natural and completely whole, despite the jumps backwards and forwards in time.

Josie notices things with intention, and then offers them to us with wonder and delight. Making tea is an act of hope, and there is glory in reading a new book. She shares a small stone sent to her by a friend, ice forming on sidewalk puddles, and the feel of her son’s hair under her hand. Josie brings us along as she takes her son to school, and goes to her community center where an old man “wears a jumper the colour of old acorns and just stirred gravy.” Her illness limits her world to a very small sphere around her house, but that world is big and filled with wonders: “Magic is simply seeing clearly and once you know that, even the mundane life you have been dealt—one of grotty side-streets, not enchanted islands—can feel like a scholarship at the school that you’ve always dreamed of.”

Josie opens her disabled life and all its complexity to the reader as well. She shares the practical reality of navigating the world in a wheelchair, and how she has learned to manage her faints so as not to alarm her son. There’s no inspiration porn or requests for sympathy. Josie is a full person with a full life, with all the joys and struggles of the type everyone experiences.

While Josie casually says, “my body just doesn’t work the way it should,” she also describes what it is like to live in that body with unflinching honesty. Her description of post-exertional malaise is one of the best I have ever read, and it’s worth quoting at length:

Feeling your own nervous system overload is a sensation I will never get used to. It seems to come when I’ve done too much, although what counts as ‘much’ may be laughable, unpredictable. . . The world begins to tip, my vision to black and blur. I duck at the glare of the landing light, my eyes unable to adjust to light quickly, if at all. I begin to feel sounds, not hear them, like tuning forks held against me. . . . I begin to feel faint as I move, slumping until I am in a position where I can safely come and go like a tide, my head on the landing carpet, yesterday’s washing on the ceiling airer high above me. I feel it in my ears, my mouth, my head, the back of my neck. Fatigue comes in a wave and staying awake, keeping myself conscious, becomes painful. Somewhere under the weight of it, there comes an awareness that I’ve nodded off right there on the floor. I am glad my son isn’t home.

There are so many passages like this, and each one lands with such veracity that even a healthy person could grasp some of what this life is like.

Over the course of her life, Josie learned that the long interruptions when her illness became severe were simply part of her life and opportunities to learn something else. She has found joy and wonder in things that others discard or dismiss or fear. Even though doctors have not found a single explanation for her illness, Josie no longer doubts her experience or whether she has tried hard enough. Her meditations on grief, pain, love, motherhood, and fear offer extraordinary perspective for anyone.

Josie is determined not to be missing, not from her own life and not from the world. She lays her life bare on the page with a purpose:

Usually, when you are unwell, people expect one of two stories: either you get better—you beat it—or you get worse and die. Stories of everyday living and undramatic, sustained existence, stories that don’t end with cures or tragic climaxes but that are made up of slow, persistent continuation as you learn and change—stories about what happens then—they may be harder to tell, but I believe they’re important too. I believe we need to tell more of them.

Josie knows that her story–our stories–need to be told and heard. She wrote this book to tell her own story, but she did not forget about us. She closes her Acknowledgements with this:

I end this thinking of the Millions Missing and many others who don’t have the energy or opportunity to tell their own story. I am so thankful I was able to. It is all too easy for us to disappear. For those isolated, housebound, or bedbound by illness, please know that you are loved and that you matter. I am with you.

A Still Life is Josie’s graceful, glorious antidote to being Missing. This book will make you feel visible, and it is without question the best book I have read this year. A Still Life is widely available in the UK, and is now available on Amazon in the US from some sellers.

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