Today is the winter solstice, the longest night of the year. It’s a time of darkness in a hard winter, but also a time of light as the sun begins to return. Perhaps it is fitting that I face the solstice with a tangle of contradictory feelings.
I usually love the holiday season but I have never felt the darkness of winter like I do today. My family won’t be together the same way because we’re observing physical distancing. We won’t share a huge Christmas dinner or have one of every kind of cookie. My niece and nephew will still enjoy their presents, but we won’t all be able to share in their joy (and manic energy) the same way.
It’s more than that, though. I am feeling all the terrible things that have happened this year, all the things that I don’t think anyone has been able to process yet. I still feel the raw horror and grief of George Floyd’s murder. I am still furious at our leaders–both parties, all levels of government–who failed us over and over as they bungled the pandemic response in myriad ways. Every time I get angry at people for not wearing masks or not staying home I remember that our leaders should have prepared and instructed us better.
I cannot–and perhaps no one can–fathom and internalize the magnitude of loss and destruction unleashed by the pandemic (and exacerbated by the failures in response). Jobs lost and businesses closed. Children left behind because they could not succeed in remote schooling for any number of reasons. The disproportionate impact on women, minorities and marginalized people, essential workers, and people with disabilities. The ripple effects of straining the healthcare system past its capacity translated into worse outcomes for everyone.
And the dead. More dead each day than September 11th, so many each day and this year that I don’t believe anyone can feel the true weight of this. We know how to mourn individuals or a group lost in a single shocking event. But this toll goes on and on like a war. The death toll in the US as I write this is 78% of the total US military deaths in all of World War II. More Americans will die from Covid-19 this month than died in the entire Vietnam War. The only way to quantify it is in comparison to wars and that is still abstract. No one can feel the magnitude of that much death.
The suffering of the long haulers is a little easier to understand, at least to the extent it is similar to life with ME. Everyone in our community expected that some people would survive but not fully recover from Covid-19. I wasn’t surprised when they met with disbelief from doctors and policy makers and I am so glad that specialty clinics are opening and NIH is investing in research. Yet I also feel envious of them. Decades of suffering and advocacy by people with ME has not garnered the same level of attention, acceptance, and resources. It’s not fair and I resent that.
I feel all this darkness wrapped around me, like a pile of unwelcome weighted blankets. There will be eleven hours of sunlight in my area today but my heart is struggling to feel that there is any at all.
Yet winter solstice is itself the lesson. It is the longest night, which means every other night is shorter. Every other day has more light. The sun comes and goes, as do the seasons, serving as Exhibit A for impermanence and change. It’s true that 2020 has been a brutal and difficult year but it is coming to an end. Things will not always be this terrible. It can’t be, because everything changes.
Yesterday I told a friend that I wanted to build a big bonfire for the solstice to incinerate 2020. She jokingly suggested that we could literally burn the year by writing down things that we’re happy to have end and throwing them in the fire. It started as a joke but we both quickly got excited about the idea. I said that I might write some things down on kindling just so I could watch them burn longer than pieces of paper.
I got caught up in imagining the things from 2020 that I want to see burned and destroyed. Imagination and train of thought is as changeable and inconstant as everything else, though. I started to think of the things I would like to keep, the things that were not terrible–or were even good–about this year. Perhaps I can think of more things I want to keep than things I want to burn. I am excessively lucky that this might even be possible.
If you are also feeling the weight of 2020 and all that entails, hang on. This year will end. The pandemic will ease. So will the darkness.
I have spent a lot of time reflecting on compassion this year. It’s been impossible not to, as I read the news each day. 2020 has been–well, it’s been 2020.
I have felt such anger and frustration at the lack of national leadership, the claims that public health measures are “anti-freedom,”and the prevailing sense of entitlement that has led people to flock to restaurants, bars, and airports. Racial justice, wildfires, the election . . . the amount of pain in this country is overwhelming.
I feel powerless to do anything besides protect myself from COVID-19. I have the luxury of being able to do so without a tremendous amount of sacrifice, especially since I am mostly housebound. I miss my family desperately, but the stay-at-home advisory has been pretty easy for me overall compared to what most people are going through.
So I’ve been taking all of that–missing my family, frustration about the pandemic, outrage about systemic racism–and I’ve been channeling it through a compassion practice I learned from Toni Bernhard. She has written about it in her books, including How To Be Sick, and in articles such as this one. The practice is called tonglen, and Toni describes it this way:
Tonglen is a two-for-one practice because you simultaneously cultivate compassion for yourself and for others. Here’s how it works. On the in-breath, breathe in the suffering of others. On the out-breath, breathe out whatever kindness, compassion, and peace you’re able to offer.
It is easy to feel compassion for families touched by COVID-19, the healthcare professionals who care for them, and for essential workers (especially those who work in education, delivery/logistics, food chain, and healthcare settings). I breathe out my gratitude and my hope that they will be safe.
There are others that do not receive much attention, or whose suffering is invisible to many of us. I breathe in the stress, frustration, and lost opportunities of children whose schooling and/or daycare has been disrupted, especially those who rely on school for safety, food, or specialized services. I breathe in the concern felt by people who live in congregant situations (care homes, jails), people who live in crowded spaces, and people whose living situations are unsafe or unhealthy in any way. I breathe in the effort, strain, and guilt felt by the women (it is largely women) who are the social safety net in the United States, who are now teachers, mediators, caretakers, and household wizards, on top of everything they did before.
I breathe out resiliency, flexibility, and courage.
But I have really struggled to feel compassion for people who resist the public health measures that are necessary to get us through this pandemic. I’m not just talking about anti-maskers, but also the people in positions of power like politicians and business owners who refuse to put these measures in place.
There are two public health goals right now: minimize the risk of COVID-19 transmission and minimize the burden on the healthcare system. The necessary steps are very clear: wear a mask around anyone who doesn’t live with you; wash your hands frequently; avoid (if possible) or minimize the amount of time you spend in close proximity to people who don’t live with you; and avoid high risk environments, including restaurants, bars, and gyms.
The steps are clear, but executing them is not easy. This requires sacrifice from all of us. It would be hard, even if we were all on the same page. Instead, politicians have resisted putting these policies in place or opposed the policies when they are instituted. Business owners have opposed them too, or made it difficult for employees to keep themselves safe. And yes, individuals have refused/ignored/opposed/resisted these measures as well.
This upsets me. I know what it is like to be stuck at home, unable to do what I want to do and preoccupied with health concerns. I know what it’s like to lose my income and not know if or when I’ll get it back. I know what it is like to be separated from people I love. Yeah, it’s hard, but you know what else is hard? Getting sick, losing people you love, or being disabled. Trust me, wearing a mask is easier. So why can’t everyone just get with the program, make the necessary sacrifices, and cooperate?
I breathe in my frustration (and theirs), my anger (and theirs), my disdain for others (and theirs). I breathe in my fear, and I breathe in theirs.
Because that is what I think must be at the root of it: fear. Politicians are afraid of losing elections, campaign contributions, political capital, and power. Business owners are afraid of losing customers and cash flow. They are afraid they can’t afford to install protective measures or to lose any productivity. They are afraid that they will lose their businesses altogether if the pandemic drags on.
And people in our communities are afraid for so many reasons right now. Afraid of losing their jobs, or not finding new ones if they are out of work. Afraid of losing their homes and health insurance. Afraid of the long term consequences of the economic recession. Afraid because they cannot access their normal support systems, such as through church or social gatherings. Afraid because they do not trust our institutions or the people in power. Afraid because they don’t know what is going to happen or how long this will last.
Fear is distressing and uncomfortable. It triggers our physical “fight or flight” response. Fear can paralyze us, exacerbate anxiety or depression, or lead to trauma. Fear can also make us feel angry and want to lash out. The longer we are afraid, the worse we feel. It’s hard to bear.
I breathe in our fears. They are so heavy, but I hold it for a moment. Then I breathe out understanding and grace, and hope for the same in return. We are all frustrated and afraid. We are not our best selves right now.
Tomorrow is Thanksgiving in the U.S. It’s a holiday weekend, and traditionally the start of the Christmas season. It won’t be the same this year. For everyone who is lonely or missing people they love, and for everyone burdened by grief, uncertainty, anger or fear, I send you the comfort that none of us is truly alone. I hope that your burdens will get lighter soon.
NIH funding for ME/CFS research should be increasing each year. Everyone agrees that this is needed. Instead, 2020 funding has flatlined. Worse yet, we are in danger of falling off several cliffs looming ahead.
Based on currently available numbers, NIH spent $11,696,985 on investigator-initiated grants and the Collaborative Research Centers in FY2020 (see note 1) That is basically flat with 2019 and 2018 spending. Here is how 2020 compared to 2019. (I have previously covered the details of 2019 spending and a subsequent fact check).
There were eleven extramural projects in 2020. Seven continued from 2019: Abdullah, Davis, Li, Nacul, Rayhan, Unutmaz, and Younger. Williams received a five-year renewal of his grant. On behalf of IACFS/ME, Friedberg received a small grant for the organization’s meeting, originally scheduled for June 2020 and to be applied to a future meeting (see note 2). Two new five-year grants were awarded t0 Jason and Shungu. The Research Centers are the same from last year: Columbia, Cornell, and Jackson Labs. Data Management Center: RTI.
Once again, NIAID and NINDS provided the vast majority of funding (83%) across all categories. Eight additional Institutes contributed the remaining 17%, although two of those only contributed a few thousand dollars to the IACFS/ME meeting. NIAID split its funding almost evenly between grants and Centers, with 53% going to investigator-initiated grants. NINDS spent 59% of its funding on the Research Centers, and the remainder on investigator-initiated grants.
Three grants from FY2019 came to an end without additional funding in FY2020, as expected: Daugherty, Friedberg, and Light. Last year, I expressed concern that if the five-year grants to Friedberg, Light and Williams (who was scheduled to end) were not renewed or replaced, investigator-initiated funding could drop by 34% in FY2020. Fortunately, Williams renewed his funding. The new R01 grants to Jason and Shungu helped keep the total funding number steady.
Which institutions and investigators are getting the most money? These six investigators received 78% of the total FY2020 funding:
Jackson Labs/Dr. Unutmaz: $2,771,471
Cornell/Dr. Hanson: $1,916,014
Columbia/Dr. Lipkin: $1,900,660
Stanford/Dr. Davis: $750,389
DePaul/Dr. Jason: $613,912
At first glance, maintaining our level of funding from 2019 to 2020 sounds like good news, especially given the once-in-a-century challenges of 2020. It sounds even better to say that $11.6 million is 74% higher than 2015, and the Research Centers did not even exist then. Note: I am not including intramural funding in this calculation.
The overall trend looks pretty good. Unfortunately, it is not that simple. The problem is the drop in funding since 2017 and the reasons for that change.
In FY 2017, ME/CFS research funding for extramural grants and the Research Centers reached its peak of $13.3 million. In FY 2020, funding was down 12.5% to $11.6 million. What accounts for that decrease? It’s not the Research Centers, because that funding hasn’t fluctuated more than about 5% up or down. The reason ME/CFS research funding is down from 2017 is because of the precipitous drop in extramural grant funding.
I pointed this out last year when I said ME research needed life support. It’s still true. Funding for standalone investigator-initiated extramural projects has been dropping for years. Let’s take a closer look at the extramural funding trend since 2015.
The peak of extramural funding was in 2016 at $7.7 million, an increase of almost 15% over the previous year. The reason why funding was so high in 2016 was the administrative supplement funding provided to seven investigators. The availability of this funding was announced in April 2016, a full five months after NIH promised to “ramp up” its funding of ME/CFS research. The supplements were a quick infusion of research dollars, but it was always intended to be a one shot deal.
It was a good thing NIH did this, because it was another 17 months before the Research Center awards were announced. If NIH had not provided the $1.2 million in administrative supplements, 2016 extramural funding would actually have been 5% lower than 2015. That would have put NIH in the awkward position of announcing it would increase funding and then have funding drop.
In any event, the supplements expired after one year and so extramural funding dropped by 20% in 2017 to $6.1 million. If the only factor driving the change in funding was the supplements, then we should have stayed steady around $6 million. But we didn’t.
Funding in 2018 dropped an additional 24%, the biggest single year decrease. The two year decrease from 2016 to 2018 was more than $3 million–a 40% decrease. This is an extraordinary number, hence my call for life support. Why did funding drop that second year, and why by so much?
I think this may partially reflect the opportunity cost of the Research Center RFA. I mentioned this in 2017. The application process for the Research Centers was time- and labor-intensive, and researchers from different institutions were collaborating. If all those researchers had been submitting individual applications, we could have seen an avalanche of proposals. Instead, those grant-writing resources were channeled into the Center applications, and a majority of them were destined to be unsuccessful. I can’t say for sure without knowing who submitted applications and asking them whether there was such an opportunity cost, but it’s a reasonable hypothesis.
Unfortunately, this does not explain where we are in 2020. There are a number of researchers who are not working in or with the Centers. Are they all submitting proposals? Have they left the field? Why has extramural funding stayed flat since 2018? What is being done to correct this problem?
Research Center Cliff
There’s another problem on the horizon for ME/CFS research, and that is the potential end of the Research Centers. The Research Centers received 61% of the total funding in FY 2020. On average, the Centers receive a combined $7.2 million per year, a total of $28.6 million thus far.
However, the Research Center grants last for five years, and that’s it. The timing of funding disbursements and when the clock runs out is a little confusing. The key date is August 2022, when the projects will officially end.
The Research Centers are not automatically renewable. There will have to be new applications, either for renewals or for new Centers. And because the funding came through a dedicated RFA, NIH will probably have to issue a new RFA for Center applications. Based on our experience the last time around, I think it is safe to say that a new RFA will take time to prepare.
However, there has been no indication from NIH that a new RFA is in the works. Dr. Vicky Whittemore commented in this week’s ME/CFS Advocacy Call that, “We’re also discussing what comes next after the five-year funding period for the current Collaborative Centers.” That’s about as neutral a statement as possible.
What would ME/CFS funding look like if the Centers are not renewed?
It looks terrible. It looks FRIGHTENING. Without the Centers, and without an increase in extramural funding, ME/CFS research funding would go from approximately $12 million to $4.5 million in one year.
Perhaps you’re thinking, “NIH won’t let that happen. They won’t kill the Centers.” I hope you are right. Just know that NIH did this once before. NIH funded several CFS research centers in the 1990s. By 2003, that funding was terminated, the Centers disbanded, and overall funding dropped 23% in a single year.
Today, the Centers represent such a huge proportion of the research portfolio that if NIH declined to renew them, our funding could drop by more than 60%. We are very very vulnerable as a result.
I think it would be foolish for NIH to abandon the Research Center strategy, especially given the likely explosion in the number of Americans diagnosed with ME in the next year or two. All of the time the Centers have spent building their infrastructure and cross-institution collaborations would be down the drain. But if we have learned nothing else about NIH, I hope we have learned that we cannot be complacent. It will take concerted effort and public pressure to secure just a renewal of the Centers, let alone an increase in their number or size.
I’ll be honest, I am tired of writing posts about NIH funding where the bottom line is somewhere on a continuum between bad and worse. Even in 2017, our best year for funding ever, we only saw two new grants apart from the Research Centers. As soon as I scratch the surface and ask questions like “Is the field growing?” or “Is the slow seed strategy really working for us?” it becomes obvious that we are still in trouble.
The burden of disease in ME has always been among the highest of many chronic diseases, and NIH’s response has always been woefully behind. Now that we are starting to see Long COVID patients being diagnosed with ME, with more undoubtedly to follow, NIH’s failure to adequately fund ME research is foolish and unconscionable. If NIH had invested in ME/CFS research, we would have more answers. If we knew more, we could help people with Long COVID–or perhaps even prevent it. Instead . . . well, here we are.
Many people have worked incredibly hard to get ME funding to this point. I am proud to be among them. But I don’t feel a sense of accomplishment when I write these annual funding reviews. It has taken a staggering amount of effort–including physical effort by disabled people with ME–just to get us to this point. And where we are right now is not a good place. We still have a very long way to go.
Note 1: Intramural funding numbers won’t be available until some time next year. I am excluding intramural funding from the analysis until the numbers are published.
Note 2: The original version of this post reported that NIH’s grant to IACFS/ME supported the virtual meeting in August 2020. This has been corrected per the information posted on Science for ME.
NIH claims to have spent $15 million on ME/CFS research in 2019. However, my examination of the details shows that NIH actually spent $13 million, which means NIH is exaggerating its spending by 14%.
This gap between reality and NIH’s claim distorts the picture of ME/CFS research. While that may make NIH look better, in the long run it helps neither NIH nor the ME community.
Discussions about ME/CFS research funding must start with a solid foundation of facts. We must understand what research is being done, who is doing it, and what resources are being invested. I have been tracking and analyzing the details of the National Institutes of Health’s funding of ME/CFS research since 2012, and it is personally very important to me that I get the details right.
At the end of each federal fiscal year on September 30th, I research and compile a list of all the ME/CFS research projects that received NIH funding that year. However, there is gap in the information available in the fall. NIH does not publish how much intramural (internal) funding was spent on ME/CFS until months later. Once I have this list of what NIH says it spent on ME/CFS, I go back and check all my work and make corrections where needed.
Frequently, I find NIH overstates its funding number. Sometimes NIH includes grants that are not related to ME/CFS research, and sometimes the errors arise from an absence of precise numbers. I’ve examined the additional information on NIH’s 2019 funding, and unfortunately, NIH has once again overstated how much it invested in ME/CFS research by a substantial amount.
First, NIH’s claimed funding to the research centers is not correct. In my previous analysis of the 2019 funding, I reported that NIH had given an administrative supplement award to The Center for Solutions for ME/CFS at Columbia University, but that it was not for ME/CFS research. Dr. Joe Breen from the National Institute of Allergy and Infectious Diseases told me last November that the award funded research into enterovirus D-68, which can cause acute flaccid myelitis in children. The research used technology developed as part of the Center’s ME/CFS research, which is why the supplemental grant went to the Center. Based on Dr. Breen’s explanation, I excluded the amount of this award from my calculations. However, NIH has erroneously included this supplemental award in its Project Listing by Category, which inflates the total funding number by $301,220.
The second discrepancy in NIH’s funding totals is much larger, but not unexpected. As I mentioned above, NIH does not publish its intramural funding numbers until months after the end of the fiscal year. When I published my 2019 funding review, I left a blank for the intramural funding, rather than guess at the amount.
NIH has now published the intramural funding information. The three intramural grants are listed at the bottom of the Project Listing by Category. Two of them, to Dr. Nath and Dr. Saligan, are definitely related to ME/CFS research and the funding amounts are similar to 2018. However, the last project on the list is problematic.
The $2 million grant is called “Pathophysiology of Involuntary Movements and Volitional Disorders” and is led by Dr. Mark Hallett at the National Institute for Neurological Disorders and Stroke. The abstract for the project describes multiple studies on the “pathophysiology of functional (psychogenic) movement disorders (FMD).” ME/CFS is mentioned in the very last sentence of the abstract: “In collaboration with other groups, we are also studying the pathophysiology of mirror movements, ataxia in SCA7, and chronic fatigue syndrome.” Given the scope of the work described in the project abstract–which only mentions ME/CFS once–it is clear that the entire $2 million cannot be fairly counted as ME/CFS research.
This is not the first time NIH has included a huge intramural project that is not focused on ME/CFS. In 2018, the culprit was a $1.5 million grant to study clinical catecholamine neurochemistry. In 2017, the intramural problem was a grant to the Human Energy and Body Weight Regulation Core. Both of these giant grants included work in collaboration with Dr. Avindra Nath’s ME/CFS Clinical Care Center study. However, in both cases, the ME/CFS-related work was a very small sliver of the overall number.
Why does NIH count the entire grant amounts as ME/CFS research when only a small percentage actually qualifies as such? NIH follows an elaborate process to categorize every research project. Each category has a definition and associated terms and concepts. Those terms are assigned weights based on their importance or relevance, and then matched to funded projects. Dr. Hallett’s project abstract specifically mentions “chronic fatigue syndrome,” so it makes sense that it would be a match to the ME/CFS category.
However, the structure of intramural funding presents a unique problem. Labs like Dr. Hallett’s do not receive funds that are earmarked to individual diseases. Nor are the labs required to track and report the way resources were allocated across projects. Instead, the lab receives a total budget and then carries out all its research. As a result, Dr. Hallett’s lab budget is counted in the ME/CFS category, as well as other categories such as “Biomedical Imaging.” The full amount of the budget is counted in both categories because NIH’s system does not require or support allocation of the budget between ME/CFS and biomedical imaging.
This flaw in NIH’s reporting system exaggerates NIH’s funding, and so NIH reports spending much more money on ME/CFS than it actually does. Not only that, there is no way to determine precisely how much was spent on ME/CFS because no one tracks the number. Dr. Hallett is not required to track how much he spent on ME/CFS research versus functional movement disorder research. He can only estimate how much it may have been. Dr. Vicky Whittemore (of NINDS) told me that Dr. Hallett estimates that 5-10% of this grant funding was spent on ME/CFS work related to Dr. Nath’s study.
Dr. Whittemore has been very helpful in answering my questions about the actual amounts spent by the intramural labs in 2018 and 2019. This is a recurring problem, and the overstatement of funding doesn’t help NIH any more than it helps ME advocates. Dr. Whittemore told me, “We are now working with the scientific staff who code the studies for Reporter to confirm what gets added to the ME/CFS numbers.” Hopefully the problem will be solved before NIH reports intramural funding for 2020.
The Correct 2019 Funding Numbers
All that being said, let’s see how this information affects the calculation of NIH’s 2019 funding. I have compensated for the two errors I found in NIH’s list. I excluded the supplemental grant to Dr. Lipkin’s Center ($301,220) from the total Research Center funding. I reduced Dr. Hallett’s grant to 7.5% of his total intramural budget, splitting the difference in his 5-10% estimate. Here is how my calculation compares to NIH’s.
The effect of the correction is enormous. NIH’s actual ME/CFS spending was $2.1 million lower than NIH’s claimed funding of $15.2 million, a difference of 14%. There can be no dispute over this. NIH has acknowledged to me that the funding I have excluded from the total was not spent on ME/CFS research.
The overall trend in the exaggerated funding numbers is disturbing as well. The overstated amount has increased every year:
This discrepancy is a really big deal. The numbers on NIH’s Categorical Spending Chart are relied upon by Congress, journalists, and advocates, even when the numbers are actually wrong.
The overstatement of funding makes NIH look better, too. It obscures the truth and minimizes the very serious funding problem in ME/CFS research. Counting money towards ME/CFS that was not actually spent that way, even if it is due to a sloppy accounting policy and not malfeasance, is misleading. Let’s face it, spending $15 million on ME/CFS research sounds much better than spending $13 million.
I wish NIH was spending $15 million. That extra $2 million would fund another research center. It would fund two or three more extramural grants. It’s a huge amount of money in an underfunded disease like ME.
As I stated at the beginning, any discussion about ME/CFS research funding must start with a solid foundation of facts. It is a fact that NIH claims to have spent $15 million on ME/CFS research in 2019. It is a fact that NIH actually spent $13 million on ME/CFS research in 2019. While the higher number casts NIH in a more favorable light, it doesn’t help anyone to rely on faulty data. A recurring problem in the history of ME research is the gap between what the government and advocates perceive to be true. So let’s start with a hard and verifiable number: NIH actually spent $13 million on ME/CFS research in 2019.
Five years ago this month, David Tuller published TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study on Virology Blog. The original PACE study, published in 2011, purported to show that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) had successfully treated people with chronic fatigue syndrome, and that 30% of patients actually recovered. Tuller’s Trial By Error article built upon and expanded the work of people with ME to expose the many fundamental flaws in the design, conduct, and claimed results in the PACE trial.
Tuller could not have known that his article would be the spark that ignited PACE-Gate. While advocates had documented the many problems with the study, and had used available means to publicize them, Tuller reached a different audience. As a well-known journalist and a Lecturer at University of California, Berkeley, Tuller had mainstream credibility. Virology Blog is a widely read science blog. Exposing the defects of the study quickly led to letters to scientific journals, a successful appeal for the study’s raw data, and a reanalysis that showed the recovery claim had been grossly exaggerated.
Exposing the defects of the PACE trial was Tuller’s original intent for Trial By Error, but the work ballooned. Tuller told me that he realized PACE was a symptom of an entire paradigm:
In broad terms, the paradigm implies that, apart from some initial “trigger” that could be an infection, the symptoms (of whichever condition) are amenable to “recovery” through psycho-behavioral rehab approaches because there is no underlying organic cause. The fatigue or whatever is perpetuated by fake cognitions, deconditioning, etc. And there is always a “vicious downward cycle” that must be broken through CBT or some other intervention. [I]t’s a cookie-cutter template they seem to apply to every problem they don’t understand. . . . I’ve looked at studies of CBT for irritable bowel syndrome, HIV-related fatigue, “psychogenic” seizures, etc–they all show it does nothing to treat the illnesses in question.
Over the last five years, Tuller has written hundreds of blog posts, given and attended talks, interviewed people with ME, and published letters and articles in both scientific and mainstream outlets. The PACE-like paradigm has been inappropriately superimposed over the medical view of so many diseases that it can’t be addressed in only one area without examining it all.
Now, the subscribers to the PACE-like paradigm are trying to superimpose it onto people with long COVID. Patients are being told to exercise and to ignore the symptoms they experience. Patients report doctors who tell them that it’s their imagination, that they are simply anxious, and so on. These are all things that people with ME have heard for decades. Tuller knows that his work is relevant here too. He writes, “Now that we’re past the sixth month of the pandemic, more and more Covid-19 patients are likely to be getting diagnosed with ME, CFS or ME/CFS, so it will be important to keep an eye on these definitional challenges.”
Economic pressure at UC Berkeley in 2017 led Tuller to explore crowdfunding to support his continued work on these issues. I’ve supported his annual campaigns because I believe Tuller’s voice is needed (see 2018 and 2019).
The pandemic has created hardship and challenges for everyone, and it is a difficult climate for fundraising. Yet the pandemic creates even more urgency to the push back against the PACE paradigm, and an opportunity to study potential cases of ME as they develop. If you can, please support David Tuller’s ongoing work.
I feel like screaming a lot these days. I’ve been following distancing/isolation guidelines for 217 days and counting, and it’s hard. Reading the news usually leads to doomscrolling on social media. Honestly, there are so many distressing and maddening things about America’s response to the Covid-19 pandemic that I think we are all entitled to a daily scream.
But this week, I want to scream because of an article in the New York Times. “How Brain Fog Plagues Covid Survivors” describes the suffering of five people with cognitive problems and Long Covid. Among them is a nurse who can’t remember what her patients have told her as soon as she leaves the exam room, and an attorney who can’t understand emails or recognize her own car.
I want to scream because this happened to me.
When I got sick twenty-six years ago, my ability to concentrate was immediately affected. I was an attorney at a large firm, and everything at work took me longer than it had before. A memo that I could have written in two hours now took me six or eight hours stretched over multiple days. I couldn’t maintain cognitive effort for more than a couple hours at a time, and my work during those few hours was nowhere near as good as before. I started forgetting things and had periods of confusion.
Early one morning, about three months after I got sick, I was sitting in a partner’s office discussing an assignment. He had asked me to identify the key documents out of a closet full of file boxes and summarize them for the client. I had turned in the memo the day before. Now we were reviewing the list, and he was telling me which documents he wanted to forward to the client.
I had no idea what he was talking about. He held the small stack in his hands–a stack that I had pulled together–and he was naming the documents he wanted to include. I didn’t recognize any of them. I didn’t know what to do, so I pretended that I understood. I wrote down everything he said, hoping I could figure it out in my office. When I got to my desk, I looked at my list and looked at the documents, and I thought, “I am going to commit malpractice.” I was terrified, and the incident convinced me to take a leave of absence from work. I was never well enough to go back.
Reading that article in the New York Times put me right back in that moment, sitting at my desk and knowing that something was terribly wrong with my brain. My story from twenty-six years ago could fit into that article, and the stories from the article sound like stories I have heard from people with ME for decades.
I want to scream because this is not news. It was completely predictable that a percentage of people with Covid-19 would remain sick because it is well-established that this happens after infections. It was completely predictable that cognitive problems would be a big component of Long Covid.
I want to scream because no one believed us. I told my doctors that I got lost while driving less than a mile from my house, and that I couldn’t think because my head was full of static. None of them bothered to order cognitive testing or send me to occupational therapy. People with ME have described these symptoms to doctors and families and co-workers and teachers and policy makers, and we have not been believed.
I want to scream because there has been very little research on cognitive dysfunction and brain fog in ME. I want to scream because the lack of research means there has been no help for us, and now there is no help for people with Long Covid. What causes these symptoms? Are there any treatments that can help? What are we supposed to do–sit quietly as our brains fail?
I want to scream at NIH. No, I want to grab NIH by the lapels and shake them. We told you. We warned you. You did not believe us, and now there are many thousands more sick and frightened people who you cannot help. We were the canaries, and no one listened. I want to scream.
The coronavirus pandemic is reshaping all our lives. With more than six million confirmed infections in the United States, we are living through a seismic cultural event impacting how we work, learn, socialize, and function. For people with disabilities, like myself and my husband, life in this pandemic is even more challenging than it was before.
The lives of people with disabilities are not valued as much as the lives of abled people, and we have seen that confirmed repeatedly over the last few months. Overall, people with disabilities are facing increased barriers right now, including barriers created by the very public health measures that are meant to protect people. We need proactive thinking and solutions to address these barriers now and avoid them in the future.
From the very beginning of the pandemic, public messaging made it clear that disabled lives are not valued the same as abled lives. News reports and official statements emphasized that *only* the elderly and people with chronic illness were at risk for complications and death from COVID-19, so the general public could feel safe. More recent calls for a “herd immunity” approach are even worse. Intentionally allowing the coronavirus to burn through the population and accepting the resulting enormous death toll is bad enough, but it is a disturbingly personal threat when your own life is one of those being offered up.
The value of disabled lives is calculated in a very literal way by the crisis standards of care used in many states. In the event of a shortage of medical resources, crisis standards of care provide frameworks for deciding which patients get access to resources like ventilators. Multiple states’ guidelines included quality-of-life judgements as part of the decision making, as in, “this person isn’t worth saving because their quality of life is so bad anyway.” Some guidelines expressly excluded people with specific disabilities such as dementia and “severe mental retardation.” Multiple advocacy groups have filed civil rights complaints, and some states modified their standards as a result. Yet there is at least one case where a disabled man was allegedly judged to not be worth saving because of his disabilities.
It’s not just public statements that show us that our lives are not valued the same as healthy, abled lives. The actions of individuals convey that message too. I am at increased risk for COVID-19 complications, as is my husband. On the few occasions I have left my home since March, I have seen people who are not wearing masks properly (or at all) or who do not maintain social distance. That behavior potentially risks my life, and it tells me that my life does not matter as much to people as their personal desire to socialize or avoid wearing a mask. People do not understand that even if they do not get sick themselves, they could make someone else very sick. They don’t make the connections between their personal behavior and the impact on public health, or on mine.
Many of our new public health measures and socio-economic adaptations have actually created new barriers for people with disabilities. For example, mask wearing is essential to reduce the spread of infection but it makes communication more difficult for deaf/hard of hearing people who need to read lips and/or rely on facial grammar. Visual cues for social distancing, such as marks on store floors, do not help people with impaired or low vision. As restaurants have moved dining outdoors and taken over sidewalks, people in wheelchairs can no longer safely move down the street.
Even our access to life-sustaining products like food and medicine has been negatively affected by the pandemic. The sudden rush for grocery home delivery services made it impossible for those of us who require these services to get our normal deliveries. Some food assistance programs could not be used for online ordering, and it took a massive advocacy effort to get at least one such policy reversed. Access to medications has also been impacted. Slowed mail delivery meant prescriptions were dangerously late. As certain prescriptions are prematurely promoted as treatments for COVID-19, people who rely on those drugs for other diseases are unable to get their medications, as happened with hydroxychloroquine.
Stay-at-home orders have challenged everyone. In many ways, my disability has made it easier to adjust to life at home during the pandemic. Abled people may now have a better understanding of what it is like to be disabled, because now they have personal experience of being prevented from enjoying their normal activities. Unfortunately, there are serious difficulties for disabled people who must continue to stay at home. For example, home health aides generally do not get paid sick leave and have been affected by PPE shortages, so people who require home health assistance must accept the potential increased risk of aides bringing the virus to them.
There is one form of access that did actually improve for many people with disabilities. When the country shut down in March, work and school moved online. Cultural and social activities did too. Suddenly, people who normally could not get outside the home for activities were able to join in. It became so much easier to work and receive healthcare, because we did not have to deal with the physical barriers of getting there.
As wonderful as this is, it is also hard to swallow. People with disabilities have needed and requested the option to work or attend school from home for years. We have been denied jobs and education because employers and schools insisted it was too burdensome to provide online access. Yet now that abled people need and want these options, it is instantly feasible. It is also true that online access is not accessible to everyone. Some people with low vision can’t use screens; some deaf/head-of-hearing people can’t understand video without captioning. There are many disabilities that make it difficult to use computers, and millions of people do not have access to the internet at all.
Some of these significant negative impacts on people with disabilities are unavoidable in the pandemic. People with chronic illnesses are at more risk from the virus, and only a treatment or vaccine can change that. However, many impacts could be moderated if disability issues were considered proactively. Our safe access to food, medicine, and healthcare must be guaranteed. Public health measures must be designed to work for people with disabilities, instead of assuming everyone can see a sign about social distancing or walk around larger restaurant seating areas. Reliance on technology solutions should also not automatically exclude those who can’t use them the same way as abled people.
People who are at higher risk for COVID-19 complications need specific guidance on what to do now that the country is re-opening. For those of us who need to continue to stay-at-home until there is a vaccine, which could be another year or more, we need additional social services and support. Our society has had eight months to learn and make adjustments for pandemic life. It is time to focus resources on helping vulnerable people cope with an extended personal shutdown.
We should also bear in mind that this pandemic will increase the number of people with disabilities. COVID-19 may cause long-term or permanent damage to the lungs, heart, and nervous system, even in people who do not get seriously ill. It is also possible that some people may never recover from COVID-19, the “long-haulers.” At this point, no one can say for certain what the individual, economic, and social costs of COVID-19 related disability will be. That is all the more reason to start treat disabled lives as equally valuable as abled lives.
This book is not a regurgitation or abridged version of the best-selling How To Be Sick (which I have previously reviewed here). Toni received requests from readers for a smaller version of the book that they could carry with them and refer to when obstacles arise. Your Pocket Companion is literally designed to be just that. It’s small and light enough to go in a purse or pocket, and is packed with concrete suggestions that will help people deal with the many challenges of chronic illness.
Your Pocket Companion is not necessarily meant to be read straight through, although I did. It is organized around ten specific challenges, and Toni offers multiple strategies and practices to help relieve the mental suffering that these challenges bring. I like to think about it as Toni’s greatest hits, because she focuses on the issues that come up most frequently and cause the most pain.
For example, we’ve all had days when our symptoms seem too intense to bear and distraction fails to help. When I am trapped in pain and brain fog, I can’t come up with a strategy to ease my suffering. Your Pocket Companion offers ten suggestions for “Responding Skillfully to the Relentless of Symptoms.” Many may be familiar to Toni’s readers, like “weather practice” and self-compassion. Toni has distilled these practices to their essences. For example, in the second edition of How To Be Sick, Toni devotes four pages to describing Drop-It Practice, and shares a story of how she used it to deal with frustration at a doctor’s appointment. In Your Pocket Companion, Toni describes the exercise in 120 words–all you need to apply it in the moment.
Among the other challenges Toni addresses in Your Pocket Companion are how to handle the pain of receiving dismissive medical care, coping with disappointment when a new treatment doesn’t help, and coping with new medical problems. She also shares suggestions for loneliness and the pain of being dismissed by family and friends.
There’s one challenge that I think everyone can identify with right now, whether or not they are sick: “Accepting Without Bitterness How Restricted Your Life Has Become.” I wish I could hand Toni’s advice on this to everyone in America right now. She writes, “Life is one surprise after another. Some of them will be to your liking; some will not.” Toni couples that reality check with compassion. It’s okay to be unhappy about how restricted your life has become. Then gently, she suggests we acknowledge our suffering and treat ourselves with compassion. Toni doesn’t say “suck it up;” she says we should do the best we can and then “take the rest as it happens.”
One of the hallmarks of Toni’s work is her unfailing kindness. She encourages us to abandon self-blame, saying, “Blaming yourself for something that isn’t your fault wastes your precious energy.” Self-compassion is an essential practice because, “There’s no reason to be anything but kind to yourself, both in your speech and your actions.” Toni never says we can overcome these obstacles in a forceful, mind over matter, bootstrap way. Instead, her hope is that “you can learn not to let those challenges diminish you.” She reminds us that it is possible to find some peace and happiness, even if you are sick.
For me, one of the most hopeful things Toni says in Your Pocket Companion is to “Try counting each moment as a separate life,” and a chance to start anew. It’s OK if I criticize myself or feel resentment about my symptoms. In the next moment, I can try again. As I’ve gotten older, I have sometimes felt like my life is over because my “prime” was lost to illness. Toni’s suggestion to always start anew reminded me that there is always another chance. Even if I never feel any better physically, there is always another chance to respond to my circumstances. I can always try again, and again, and again.
How To Be Sick: Your Pocket Companion is a portable reference guide, like a how-to manual for coping with illness and caregiving. Having it with you can help you remember to examine your feelings and perhaps find a new way to minimize your suffering. As with all of Toni’s books, I cannot recommend it highly enough.
One thing I have learned during the COVID-19 pandemic is that people with chronic illness have a lot to teach healthy people. We have the skills and hard-earned experience of coping with social isolation and restrictions on what we want to do. This knowledge could really help all the people who are coping with isolation and restrictions for the first time.
My husband and I are doing everything possible to avoid infection because we know how scary COVID-19 can be. I have not left my house for anything except short walks in more than two months. No one has come into our house. We haven’t eaten any food that we did not cook ourselves (which admittedly has made for some interesting dinners when we’re both crashed out). We lost some of the assistance we had relied on, like our house cleaners, so that has created some challenges. We haven’t always been able to get everything we wanted from a store when we wanted it, but many kind people have helped us by shopping for those items on our behalf. I miss my family, and I don’t know when I will be able to see them in person.
These are all such small problems compared to what others are enduring. I’ve watched the federal response to the pandemic with horror and alarm. My grief and anger over the death of George Floyd has transformed into a deeper pain as our cities react and burn. There is so much suffering in our country right now, and all I can do is bear witness.
The only way I know how to cope with all of this is to focus on my tiny corner of the world. I’ve been sewing masks, and writing a bit. Those of us who have socially distanced out of necessity for years have experience that can help those who are struggling with it now. I offered some advice on that in an essay for Jessica Abel’s blog.
We have found beauty in very small things. We watched two baby bunnies grow large enough to leave our yard. Now there is a chipmunk making himself comfortable here. For some reason, our pink rhododendron put on an incredible show this spring, which made the bees very happy and fat.
Our county is easing restrictions next week, although most people are acting as if the wait is already over. I don’t think our lives will change that much. Until we know more about COVID-19, and the risks for people with health issues like ours, we are not taking any unnecessary chances. I worry a great deal about the people who are required or have chosen to take chances by going back to work, back to stores and public places. I don’t think the worst is over.
During my telemedicine appointment last week, my pain management doctor asked me how I was. I said I was doing better than I had in awhile. He said that they’re hearing that from many patients in the practice, which really surprised me. Why would people with chronic pain or chronic illness be doing better now?
I have theories. For me, I think that it has helped to have much more control over my sensory inputs and energy outputs. I don’t leave the house. The only occasional visitor I’ve had stays for about an hour, and we talk through the glass storm door. No doctor appointments out of the house, which means no long car rides to and from, and no noisy waiting rooms. I haven’t had to deal with the sensory input of everyday life out in the world. Maybe this has conserved my energy and capacity, and I have been able to channel that into more meaningful activities like making masks. The satisfaction I get from that has definitely improved my mood. I also think it helps that so many people are temporarily living the housebound lifestyle. More people are moving at my speed, now.
Where do we go from here? That’s a lot easier to answer for myself than for our nation. I want to keep the things that have made my life better, like telemedicine and more peace and quiet. I am fortunate that I can wait and see what happens with the virus, watch for the next wave(s) and stay safe at home.
I think there are many lessons to be learned from our current crises, especially about our communities and supporting one another. Perhaps people will stop saying to us, “You’re so lucky to be able to stay home all the time!” now that they know how hard it can be. Perhaps we will make choices to be truly inclusive of people regardless of race, age, or disability. Perhaps we will try to heal the wounds we are inflicting upon each other.
I hope that you are in a good place, and also that you will see something in your life get better soon. We are nowhere near done with this pandemic or with hard times. Let’s remember to take care of each other.