#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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David Tuller: Crowdfunding for Us All

Posted on April 22, 2021 by Jennie Spotila

I have supported David Tuller’s investigative journalism since he first began his crowdfunding campaigns,* but it has never been more important than right now. I urge you to join me in supporting his current fundraiser not only for yourself, but for millions of us.

Tuller’s work continues to have a tremendous impact on the controversial use of psycho-behavioral treatments for ME/CFS. As I said last fall, Tuller brought the controversy to the attention of media and scientific outlets in a way that no one had previously been able to do. Yet he didn’t just push one domino over, setting a cascade in motion. Tuller continues his reporting and his scientific commentary on the discredited PACE trial and other versions of the same theory.

People with ME/CFS are not the only ones who benefited from Tuller’s spotlight on the myth that psycho-behavioral therapies are a legitimate and effective treatment for the disease. That same myth is now being aggressively pushed on people with Long COVID. Doctors are telling long haulers that they are simply anxious, or that they can exercise their way out of their disease. Some media outlets continue to perpetuate this myth, aided and abetted by the PACE trialists and the rare individuals who say they have recovered from Long COVID through exercise. However, this myth is not given the credence that it was ten or even five years ago. Tuller’s work is part of a body of evidence that, fortunately, is being reported by many media sources.

It is far too easy to imagine what the public discourse on Long COVID would be if the PACE trial was still seen as good science. There might not be any Long COVID treatment centers, or if there were, they would be employing PACE-style techniques. The Long COVID advocacy movement would be facing the same uphill battle that people with ME/CFS have fought for decades, struggling to convince doctors, researchers and policy makers that this is a physiological disease, not neurosis or a twisted desire for secondary “gain.”

We need David Tuller to continue reporting and writing scientific commentary. We need him to continue working with other academics to expose the lie at the root of PACE theory. But we need him to continue not just to help people with ME/CFS, but to help people with Long COVID. It is possible that we could see one million or more people with Long COVID qualify for a diagnosis of ME (just in the United States). In the face of this epic public health crisis, we all need David Tuller to continue his work–which will help the rest of us do ours.

Tuller’s crowdfunding campaign ends on April 30th. Please make a financial contribution if you can, and/or share the campaign on social media.

*Read my previous articles about David Tuller’s work: 2017 2018 2019 2020

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The Death Threat Myth Exposed

Posted on April 6, 2021 by Jennie Spotila

Update April 7, 2021: Further comment from Dr. Vicky Whittemore added to the end of this post.

Last week, an old story was recounted to a new audience. During the March 30, 2021 NIH telebriefing with the ME/CFS community, Dr. Vicky Whittemore said that there had been death threats against grant reviewers in the past, and that this was one reason why NIH is now withholding the names of reviewers on the ME/CFS Special Emphasis Panel (referred to as the “SEP”). This is not the first time that NIH has used the story of death threats to justify withholding the grant review rosters from the public. This excuse is overblown, and every repetition of it harms the ME/CFS community by perpetuating derogatory stereotypes of advocates and people with the disease.

I can say that the death threat story is exaggerated because I have documentation of what actually happened. I began investigating who serves on the ME/CFS SEP in 2012. Grant review panels are federal advisory committees, and the law requires that the membership of the committees be disclosed to the public. Despite this requirement, Don Luckett at the Center for Scientific Review told me in 2012 that they no longer posted the rosters online “due to threats some previous panel reviewers have received.” At his suggestion, I filed a FOIA request for the rosters, and I also requested evidence of the threats. NIH initially refused to release the information, but I appealed and in 2014 I won. NIH released the rosters to me, along with the evidence of the threats cited by Mr. Luckett.

Despite Luckett’s use of the plurals “threats” and “reviewers,” the documents show that there was only one isolated incident. Dr. Myra McClure, a retrovirologist from Imperial College London, was scheduled to serve on the SEP on February 22, 2011. On February 5th, she wrote to the Panel’s Scientific Review Officer:

You will by now be aware of the campaign building up on websites to have me removed from the Committee reviewing CFS grants. I have been subjected to a couple of nasty calls from the US yesterday. One was from a journalist, Robert Serrano who has been researching the CFS/XMRV issue for his local paper, News Sun, distributed in the Wisconsin/Illinois region. He phoned to warn me that he had found out that “some of the extremists are obtaining guns with a view to marching to NIH and CDC to look for me and others like me who might stop CFS funding.”

Dr. McClure did not express fear or alarm in her email. Instead, she referred to the call as “bullying/intimidation,” and withdrew from the Committee because, “I am too busy to put up with nonesense [sic] like this.”

Two days later, Mr. Luckett forwarded McClure’s email to a colleague with the following summary:

A group of chronic fatigue syndrome activists have objected to a scientist we appointed to a review panel and she has received a number of disturbing calls which has forced her to resign from the panel. This reviewer, Dr. Myra McClure, said that a reporter from the News Sun in Wisconsin/Illinois called to warn her that extremists were obtaining guns with the intent of using them against NIH, CDS [sic], and others. See below. (I called the News Sun and they said that had [sic] no reporter by the name given.).

The SEP meeting was subsequently canceled. A new panel was recruited and the meeting was held without incident on March 24, 2011.

To be clear, NIH decided to withhold the names of grant reviewers from the public despite the legal requirement that the names be disclosed. Federal advisory committees do their work in public, and committee members know that their names and contact information will be disclosed to the public. Nevertheless, NIH withheld the names for years, thereby shrouding the operation of the SEP in secrecy and preventing the public from assessing who was reviewing ME/CFS grants.

I can imagine a situation where death threats could be so specific, targeted and frequent that it may warrant special precautions of some kind. But that is not the case here at all. The sum total of evidence of “threats against reviewers” amounts to a single phone call in 2011 to a single reviewer, relaying a story of “extremists” with guns who were supposedly going to march on NIH and CDC at an unspecified date and time. As unpleasant and annoying as the call was to Dr. McClure, the statements do not appear to meet the criminal definition of a death threat. Her description of it as bullying and intimidation is much more accurate. And that’s all there is. There were no other threats; there are no extremists. It goes without saying that no one obtained guns and marched on NIH or CDC. Yet ten years later, NIH is still citing this incident as justification for withholding information from the public.

It’s easy to trace how the story of that single phone call to Dr. McClure was repeated and magnified over time. After I made my initial inquiry about the SEP rosters in July 2012, there was email correspondence among several people at NIH’s Center for Scientific Review. Included in a batch of material “relevant to why we’d prefer the ME/CFS rosters not be made public” was an August 2011 article from The Guardian relating stories from researchers in the UK about hate mail, crank calls, and at least one disturbing personal interaction. The article uses words like “extremists,” “militants,” and “dangerous,” but includes no evidence of any coordinated group or campaign. McClure’s withdrawal from the SEP is referenced in that article, but now it is described as “she had to withdraw from a US collaboration because she was warned she might be shot.” That is quite a bit more specific and disturbing than the way she described the phone call immediately after it happened.

Fast forward ten years to the ME/CFS telebriefing last week: Dr. Whittemore referred to the death threat story while delivering her update on grant review. She was discussing why NIH is not publishing the ME/CFS Special Emphasis Panel rosters, and she said:

[T]he NIH policy has always been that members of the special emphasis panels are–that the names are listed in aggregate for all of the special emphasis panels. And it’s my understanding that actually before I joined NIH in 2011, that there were death threats made to some of the reviewers. And then that’s in large part why, um, that plus many of the special emphasis panels review very small numbers of grants, that it would be very obvious to investigators who reviewed their grants and NIH peer review policy is to keep the review anonymous. So those, for those reasons, the actual identity of the reviewers is not released for each individual special emphasis panel, but is released in aggregate.

Dr. Whittemore, like Mr. Luckett in 2012, said “threats” and “reviewers,” when the documents show there was only one isolated incident. And once again, NIH is saying those “threats” justify withholding SEP meeting rosters.

I reached out to Dr. Whittemore for comment, and asked for details about the threats she mentioned. She replied,

I learned about the death threats from someone at CSR who is no longer at NIH. I was never told any specifics about how many or to whom the threats were made, or who made the threats, so I am unable to answer your questions below. My understanding is that it was more the effort to maintain confidentiality of reviewers that led to the aggregate rosters for the Special Emphasis Panels.

Dr. Whittemore made her comments last week based on a story she heard from someone else at NIH, a story which she says contained no specifics. This makes me wonder how often this story gets repeated at NIH, and how much it informs the way NIH sees people with ME. The story is still being told, and is being used as an excuse to withhold information from the public. That certainly suggests that NIH believes some ME/CFS advocates could be dangerous–otherwise, why would a story from ten years ago be so significant.

I spoke with several advocates, all of whom said that Dr. Whittemore’s repetition of the death threat story is harmful. Sharon Shaw told me the comment, “portrayed the ME/CFS community as dangerous and unstable. . . Comments like this vilify the ME/CFS community, and further stigmatize and disparage people living with ME/CFS.”

Advocate Kellyann Wargo told me:

NIH, stating that they have received death threats in regards to ME, sends a smoke signal to researchers that they should think twice about getting involved in ME research, a field that is already lacking funding and researchers. It reinforces the stigma and marginalization of ME to the general public. Once that stigma is broadcast, it is difficult to extinguish. NIH is punishing the ME community because of a rogue agitator. They are saying to advocates “why should we fund anything to do with ME if an instigator is sending NIH death threats?”

That idea was echoed by Denise Lopez-Majano, who said, “How can we trust NIH has our best interests at heart if they say things like this? If NIH is perpetuating this belief among themselves, how can they expect to encourage new researchers to enter the field?”

I asked Dr. Whittemore how she would respond to the concern that her comments could perpetuate the myth that people with ME/CFS are unstable and/or dangerous. She replied, “I am sorry that my comments may be harmful to individual [sic] with ME/CFS. This was not my intent.”

The death threat story has taken on a life of its own. One crank call to one reviewer in February 2011 became “threats to reviewers” that NIH still believes is sufficient justification to withhold the rosters of ME/CFS SEP meetings. NIH continued to use that justification for two years after I won my FOIA appeal. The story was repeated within NIH over the course of ten years, including to Dr. Whittemore. She then went on to repeat the story to the ME/CFS community as part of the reason why NIH once again decided to withhold the membership rosters of the ME/CFS review panels.

The repetition of this story by a leading member of the Trans-NIH ME/CFS Working Group does real harm. Dr. Whittemore’s comments lent gravitas to the stereotype that people with ME are mentally ill and dangerous, and makes it sound like there is still a threat to be concerned about. Dr. Whittemore presented the story as established fact–despite the fact that this single phone call occurred ten years ago; despite the fact that there is no evidence of “extremists,” “militants,” or any violent intentions among ME advocates; and despite the fact that she herself has no specifics about what occurred and when.

In light of the full picture, it appears to me that there is a persistent prejudicial view of ME advocates at NIH. Furthermore, it is obvious that NIH should not continue to recycle this story for any reason, including as a justification for preventing the ME community from evaluating who reviews ME/CFS grant applications.

Update April 7, 2021: Dr. Vicky Whittemore provided additional comment:

Dear Jennie,

I am truly sorry for the hurt and harm I have caused the ME/CFS community by raising the issue of death threats in my comments during the NIH telebriefing.  Since the telebriefing, I have heard from several individuals with ME/CFS who have expressed to me how hurtful my comments were. That was certainly not my intent and I sincerely apologize for making those remarks. I was wrong to have said those things.

NIH works to maintain the confidentiality of peer review of grant applications reviewed in all standing study sections, and in the Special Emphasis Panels that often review very small numbers of applications.  The main driving factor for the aggregate listing of members of the SEPs is to keep the identity of the reviewers confidential. 

For everyone’s information, the reviewers who participated in the most recent ME/CFS SEP were posted:  https://public.era.nih.gov/pubroster/preRosIndex.era?CID=101323&AGENDA=409493

I would appreciate it if you would post this apology to the community.

Sincerely, Vicky

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Vaxxed Part Two

Posted on March 31, 2021 by Jennie Spotila

On Friday, I got my second dose of the Pfizer COVID-19 vaccine. The vaccine side effects were definitely more intense this time, but not unmanageable. I am so glad I was able to be vaccinated, and I am documenting the experience so that other people with ME can get a sense of what to expect.

My husband and I had no difficulty scheduling our second shot. The date was set by the county, four weeks after the first dose, and delivered at the same clinic location. Once again, my husband and I were able to get appointments in the same time slot.

As I had before the first shot, I took an extra dose of my H1 histamine blocker one hour before. I have mast cell activation syndrome, and The Mast Cell Disease Society recommends that patients premedicate with their H1 blocker in this manner. I also skipped my beta blocker the night before, on the advice of my doctor. Be sure to check with your doctor about any changes to your medications prior to vaccination.

Upon arrival at the high school vaccination clinic, I noticed two things right away. First, there was an increased police presence compared to our first time. I don’t know if that was due to the mass shootings in Atlanta and Boulder, or due to the number of people they expected onsite that day. Second, there were a number of wheelchairs parked at the entrance, and I later saw a volunteer pushing someone through the line in one of them. I was really happy to see that these were available for people who might not usually need a wheelchair but who would be unable to walk around the clinic site.

Another improvement was the clear marking of walking lanes and distance markings. Volunteers gave better instructions about where to go. The logistics seemed to be smoother. Our actual waiting time for registration and then vaccine administration was shorter than last time as well. The observation area had also been improved. The high school bleachers were folded up and the entire area was dotted with plastic chairs in ones and twos.

Getting the shot was quick and completely painless. The volunteers have optimized the whole thing for maximum efficiency. Syringes are pre-loaded. One volunteer handled data entry and marked my vaccine card, while the nurse asked a few questions about whether I had ever reacted to a vaccine. Even the bandaids to cover the injection site were partially opened and waiting in a line on the desk. The whole thing went so fast that I hardly had time to thank the nurse and volunteer.

While we waited in observation, my husband turned to me and said, “Where’s the nearest Krispy Kreme?” (We had to look it up, and the answer was 30 minutes away. We didn’t go.) After I texted a picture of my vaccine card to my family and friends, I spent a few minutes just watching everyone in the high school gym. The noise echoed around the space, and most people seemed to be in a good mood. I thought about the video of Yo-Yo Ma playing at his vaccination clinic after receiving his second dose. As the nurse who administered his vaccine said, “It just brought that whole room together. It was so healing.” We need that in every clinic! What a tremendous gift immunized musicians could give to their communities. I think it could do more than lift the mood of everyone present. Vaccination is not just a personal healthcare decision. It is an act of love for each other. Perhaps music could help us feel that in a way that the necessarily fast-paced mass vaccination clinic environment does not.

After our self-timed 15 minutes was up, we thanked the volunteer in the observation section and headed to our car. It wasn’t until I got to the parking lot that I started to cry. It finally hit me: my husband and I are going to be ok. Ever since March 2020, when I read this first-person account of caring for a spouse with COVID-19, I have lived in terror of my husband getting sick. The COVID-19 vaccines available in the US are highly effective at preventing people from getting COVID-19. And no one who received a vaccine in the clinical trials was hospitalized or died of COVID-19. It is true that there is a lot more to learn about the long-term effectiveness of the vaccines, but for now I am confident that neither of us will get seriously ill from COVID-19. The relief of that hit me, and I cried.

When we got home, I had to pay up on a bet. Late last year, my husband and I made a bet about when we would be fully vaccinated. I said it wouldn’t be until summer. He said we would be vaccinated by April 1st. The prize was a batch of homemade chocolate chip cookies. My husband doesn’t bake, and I was really looking forward to watching him learn to make cookies. But I lost! I knew, based on my experience with the first vaccine dose, that the side effects would hit me quickly. I planned ahead and made the cookie dough the day before, and as soon as we got home, I scooped it out and baked the cookies. (Homemade chocolate chip cookies are better than donuts anyway, don’t @ me.) That was a smart choice, because the side effects did not wait long.

Less than four hours after receiving the vaccine, I felt a crash coming down on me like a heavy curtain weighing thousands of pounds. I had trouble putting coherent sentences together, and I couldn’t read or knit. My resting heart rate was elevated at least 15 beats per minute higher than normal. I listened to some music, ate some dinner, and went straight to bed.

The first vaccine dose had given me muscle and joint pain, as well as severe malaise for about 36 hours. The second shot caused pain in my lymph nodes under the dose arm, as well as overall muscle pain. I was feverish, and awoke with night sweats the first night. The muscle pain was severe enough to wake me up the next morning, and prevent me from napping all day. My resting heart rate was still higher than normal, but not as elevated as the hours right after the vaccine. I also had difficulty staying upright, even in a recliner, although that did improve as the day went on. In the evening, I had an episode of vasovagal syncope without fainting, possibly triggered by gut cramping.

When I’m crashed, I feel like I’m wearing a football helmet and pads made of concrete. That feeling persisted into the second day, even as the other vaccine side effects improved. I couldn’t do any of my routine tasks, and the heavy aches stayed with me. It was a difficult weekend. Fortunately, my husband had no side effects at all.

Every day since has been a little bit better. My arm still hurts sometimes, and my headache comes and goes. It’s now five days since my vaccination and I think I am about back to baseline. That’s worse than a healthy person would expect, but not the worst case scenario I feared.

I strongly encourage people with ME (and the people they live with) to consider getting vaccinated for COVID-19. Based on my experience, and that of my friends with ME, the side effects are intense but not unbearable. Crashing for a week is far better than moderate to severe COVID-19. That being said, please consult with your doctor before making the decision. You may need to adjust medications prior to vaccination, especially if you have mast cell activation syndrome. Your doctor is best placed to advise you on your individual circumstances and whether you are well enough to take the vaccine. I know at least one ME patient who has been advised to wait, so discuss your options with your doctor if you have any concerns at all.

These vaccines are an incredible achievement. Prior to COVID-19, the fastest vaccine to market took four years. It’s frightening to imagine the death toll if we had to wait three more years for a COVID-19 vaccine. To have vaccines this effective, this safe, and this quickly is proof of what we can achieve when we invest the money and the effort in a scientific problem.

There is one more thing I need to do to ensure I am fully immunized against COVID-19: I have to wait. A person is not considered fully immunized until two weeks after the second dose of Pfizer or Moderna’s vaccine. And once I hit the two week mark? I am going to hug my Dad for the first time since February 2020.

Thank you, Science. Thank you.

Credit: The Amplifier, amplifier.org
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Vaxxed Part One

Posted on March 4, 2021 by Jennie Spotila

I got my first COVID-19 vaccine dose!! Since so many people with ME have legitimate concerns about the vaccines, I thought it would be helpful to share my own experience.

Two weeks ago, I described the melee competition for vaccines in my area. I was prepared to wait however long it took, and I spent time every day going through all the possible options to get an appointment. A very kind friend made me an appointment for mid-March at a pharmacy in Philadelphia, but it wasn’t clear if the pharmacy was restricting the vaccine to city residents. Finding an appointment closer–and sooner–was my goal.

Then last week, I got an email from my county! My place in line had come up and I had a chance to make an appointment. The catch was that slots were only open during the next two days. That can be tricky for anyone’s schedule, and a more severely ill ME patient might need more lead time in order to rest and prepare. I was so eager for the vaccine, though, and 48 hours notice was doable for me. And I got an appointment for my husband too!

I know many people are concerned about the potential for allergic reactions to the COVID-19 vaccines, particularly if they have mast cell disease. I have mast cell activation syndrome, and it is generally well controlled by medication. The Mast Cell Disease Society recommends people avoid the vaccine only if you know you are allergic to one or more ingredients in it, or are otherwise advised by your doctor. They also recommend pre-medicating with your H1 histamine blocker one hour before the vaccine. My doctor concurred, so that’s exactly what I did. One hour before the appointment, I took an extra dose of my H1 blocker. Also on the advice of my doctor, I skipped my beta blocker the night before.

The vaccine process itself was a little overwhelming. Our appointments were at a local high school, and there were a lot of people there. The signage wasn’t great, so it wasn’t clear where to go to register versus where to wait for the shot. Fortunately, there were many volunteers directing traffic and answering questions. I was thrilled to see people volunteering to help! We’ve been so isolated for the last year that I had no sense of whether this was happening at all. Those volunteers were essential to keeping things running smoothly.

Once we knew where we were going, it was quick to get registered and in line for the vaccine. If you have mobility issues, including difficulties waiting in line, you might want to call ahead to your vaccination site. The entire place was wheelchair accessible, but there was no obvious accommodation for people who needed to sit while waiting. I’m sure a volunteer would have assisted if I needed it, but ask in advance if you have concerns.

Getting the vaccine itself was quick, of course. The nurse did ask me what my specific underlying conditions were, which caught me off guard. We had been told we would not need to disclose the conditions that qualified us for the shot. However, when I started listing them she said, “Oh ok, nothing that will interfere with me giving you the vaccine.” After the injection, she directed me to the observation area. She said, “If you start to feel any different than you do right now, raise your hand and someone will help you.”

The post-vaccination observation was self-timed, which I thought was interesting. There were volunteers watching over people and checking on them, but they weren’t timing us to ensure we stayed at least 15 minutes. One person felt faint and needed to lie down. I’ve heard from friends that this is not unusual, but I don’t know if feeling faint after this vaccine is common everywhere. Keep it in mind, though, especially if you have any orthostatic intolerance issues. Fortunately, I felt completely normal (for me) so we left after about 20 minutes.

Now to the after effects, which is what I think concerns most people with ME. A few hours after the vaccine, I got a headache and then crashed. I managed to eat something and then had to be horizontal. The same was true the next day. I had both muscle aches and random joint pain in places I don’t usually get it. And the malaise was no joke. I slept a lot, and was in bed most of the day. The good news is that the next day, I was approaching baseline. And since then, I have had a normal-for-me week.

The bottom line of my personal experience is pre-medicate with an H1 blocker, and prepare for one or more crash days post-vaccination. Most people (not just people with ME) report that the second vaccine dose triggers more intense side effects. I’m preparing myself for that to happen when I get dose two in a few weeks. For me personally, I am very willing to go through a bad crash in order to know that I won’t die or even be hospitalized if I end up getting COVID-19.

Have you gotten a COVID-19 vaccine? What was your experience like?

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Vaccine Melee

Posted on February 17, 2021 by Jennie Spotila

The COVID-19 vaccine rollout has been uneven, to put it kindly. In my home state of Pennsylvania, it’s been a mess (that’s also putting it kindly). The actual situation has a lot more in common with a Black Friday scramble for a PlayStation 5. Or the Battle of Pelennor Fields.

Here’s how I thought the process would work: The federal government would send a supply of vaccine to the state based on population demographics, and the state would send it out to the counties. The counties would control distribution to providers (like pharmacies and hospitals) and also offer vaccinations direct to the community. People would sign up on one list with the county (or state), and then wait their turn as the vaccine supply increased from a trickle to a torrent. I thought we had learned from past mass vaccination campaigns.

I was naive, to put it kindly.

Here’s how it’s actually playing out here: The federal government sends a small fraction of what Pennsylvania requests, less than a quarter of the request in one recent week. No one seems to know how the feds decide how much to send. Pennsylvania then distributes that reduced supply to the counties and to providers who are willing to vaccinate, but the Department of Health has not explained how they decide how much each entity gets. The providers and counties then offer the vaccine to eligible people.

That sounds straightforward enough, although the low supply is an obvious problem. My county estimates that more than 200,000 people are currently eligible for vaccination, including both my husband and me. Last week, the county received only 3,900 first doses for the entire week. There is no public reporting on how many first doses were sent directly to other providers in the county. Two months into the vaccination campaign, less than 10% of those eligible have been fully vaccinated.

Yet the barriers to vaccination here extend far beyond the low supply. Pennsylvania decided not to create a central registry of people who want to be vaccinated, and no one has offered a plausible explanation for why. Instead, Pennsylvania left it up to the providers to figure out. Note that I said providers, not counties. Every single vaccine provider in the state has to figure this out, and there are about 1,700 participating providers.

If you want to get a vaccine from an independent pharmacy, you need to get on their list. If you want to get the vaccine from a primary care practice, you need to get on their list. Large health systems like Jefferson Health and Penn Medicine have their own obscure method and have told patients, Don’t call us, we’ll call you. The counties have lists too. Putting your name on the county list only gets you in line for a county-provided vaccine. The county list does not interface with the other providers. So everyone has to sign up with each provider as well as the county. While our county is encouraging people to get the vaccine anywhere they can and to sign up for lots of lists, the state is actually discouraging people from doing that (although no one has explained why).

Larger chain pharmacies are running a completely different process. Rite Aid and Walgreens and other chains don’t have waiting lists. They offer appointments through their websites, except it’s not clear when they post the new openings. You have to be lucky and looking at the website at exactly the right moment because the appointment slots disappear within seconds.

Then there is the problem of line jumpers. My county is using a state-provided program called PrepMod to manage vaccine sign ups and appointments. When it’s your turn to be vaccinated, the county send you an email with a link to make your appointment. But PrepMod doesn’t create unique single-use links. The links can be used by more than one person. So people are forwarding the links to family and friends and they can make appointments, too. Even if they are all eligible under the current vaccine phase, it still means they are jumping the line.

The end result is an absolute melee. Last weekend, an independent pharmacy announced it was opening 400 slots, and 15,000 people tried to get one. The appointments were gone in less than one minute. I managed to get my husband an appointment by some miracle, but not one for myself.

Individuals in Pennsylvania have to surmount multiple barriers to get vaccinated. First, you have to know what distribution phase you qualify for. Then, you have to decipher the decentralized process to even know where to start. You need access to the internet, and it really helps if you read and speak English. You have to sign up at as many places as you can find. If you can spend hours refreshing screens on your computer, you have an advantage. If someone sends you a sign up link, you have an advantage. If you know someone who knows a pharmacist, you might be able to skip the line altogether. People with access and means can get vaccinated, and they get other eligible people vaccinated. If you don’t have access to the internet or don’t understand the labyrinth, then you are not getting vaccinated right now.

This is due to a failure of leadership at the federal and state level, and is replicated to one degree another in most states. At some point I hope there is accountability for that. The current problems in Pennsylvania are well recognized and acknowledged by the county and the state. The county is trying to come up with a workaround to prevent line jumpers. The state now requires providers to offer some appointments by phone, and is concentrating the new supply among a smaller number of providers. Everyone keeps asking us to be patient.

Oh, I’m being patient alright. I check a long list of provider websites at least twice a day. I fill out the sign up forms at retail pharmacies every time, and then try to find a pharmacy within a 50 mile radius with open appointments. I check the county numbers to see if they have started scheduling people who signed up the day I did. I watch the weekly briefings from my county and the state, and I’m reading as much as I can in the news.

And I’m trying really hard to not let the search for a vaccine take over my life. It’s not healthy for me to refresh web pages for hours a day. I only leave the house about once a month, and I double-mask when I do go out. I know the vaccine supply will increase and eventually my turn will come. I’ll stay as safe as I can until it does.

But I can’t help thinking that there must be a better way.

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Vax Me

Posted on February 2, 2021 by Jennie Spotila

There is nothing I want more than to be vaccinated against COVID-19. I know many people in the chronic illness community, particularly people with ME and/or mast cell activation syndrome, are apprehensive about the COVID-19 vaccines. I feel the opposite: I am enthusiastic about these vaccines and can’t wait to get one.

Image credit: Johns Hopkins Medicine.
Important: My opinion is not a substitute for medical advice. Some ME specialists have issued statements about whether/how to take the vaccine, and it is best to discuss the vaccines and your individual risks with your doctor. If you are interested in an overview of COVID-19 vaccines, Caroline Christian wrote a great article that explains how they work.

As of this writing, two vaccines have been approved in the United States and both work amazingly well. The New York Times reported that of the 32,000 people who received the vaccine in the Moderna and Pfizer trials, only ONE person developed severe COVID-19, and that single case did not require hospitalization. Both vaccines were about 95% effective at preventing COVID-19 disease of any severity at all.

That level of protection is the main reason I want a vaccine as soon as possible. I am terrified of COVID-19 disease. Early in the pandemic, I read this article by a deputy editor of the New York Times about caring for her husband when he had COVID-19. It took me back to the first few days after my husband had a stroke, reminding me of the fear and level of effort that came with caring for him. My husband and I both have high-risk conditions, so if we get COVID-19 there is significant potential for it to be severe disease. The COVID-19 vaccines will protect us from that.

The potential side effects of the vaccines are not a deterrent to me, despite the difficulty I have had with vaccine side effects in the past. While the flu vaccine makes me feel a little crummy, I was crashed for days after the second dose of Shingrix. On the other hand, I just received the pneumococcal vaccine and had no side effects at all. These vaccines all use different platforms or mechanisms to provoke an immune response, so a bad reaction to one vaccine doesn’t mean you’ll have the same reaction to all vaccines. I’m still mentally prepared for the COVID-19 vaccine to hit me hard, but crashing for a few days pales in comparison to the potential seriousness of COVID-19 itself. Jen Brea became bedbound for months after COVID-19, so the risk of vaccine side effects are worth it to me.

Beyond typical vaccine side effects, there is a risk of severe allergic reaction to the vaccines. This raises special concerns for people with mast cell disease, including people (like me) with mast cell activation syndrome. There is little documented evidence of whether people with mast cell disease have an increased risk of side effects or complications from the vaccine. The Mast Cell Disease Society recommends pre-medicating with an H1 blocker one hour prior to vaccination. The Center for Complex Diseases concluded “that the risk:benefit ratio of those with severe allergies still favors getting the vaccine vs. taking one’s chances with getting Covid19.” I will definitely do what I can to mitigate any allergic reaction or symptom exacerbation.

Here’s how I balance my risks and benefits: I am at high-risk for severe COVID-19 due to underlying conditions (in addition to ME). The Moderna and Pfizer-BioNTech vaccines provide 95% protection from COVID-19, and nearly complete protection against severe disease. Neither my risk of side effects nor my mast cell activation syndrome are so significant that they outweigh the benefit of being protected from COVID-19 disease.

I know many people with ME who are taking a wait-and-see approach to the vaccine, and they all have good reasons for doing so. I do not intend to criticize anyone for their choices. For me, though, the wait is not worth the risk.

First, we don’t know if a vaccinated person could still become infected and possibly transmit the virus to others, including unvaccinated members of their households. There hasn’t been much reporting on what happens when only some people in a household have been vaccinated, and I don’t know if the vaccine clinical trials collected data on household contacts to see if there was any difference in the rate of infection.

Second, we might not be able to rely on herd immunity for protection. Herd immunity is the indirect protection from an infectious disease that comes when a sufficient percentage of a population is immune. At the right level of group immunity, the pathogen can’t circulate well enough in the population to spread to the people without individual immunity.

How many people need to be immune in order to reach herd immunity? It’s different for every virus. Measles requires 95% population immunity, while polio requires about 80%. Early in the COVID-19 pandemic, it was estimated that herd immunity could be reached when 70% of the population was immune. However, no one knows for certain, according to both WHO and CDC. NIH Director Dr. Francis Collins recently estimated that 80-85% immunization will be needed.

This is a problem. The agonizingly slow rollout of the vaccines in the United States means that even under the best projection, we won’t be able to immunize 85% of our population until the fall at least. And not everyone is eager to take the vaccine. Vaccine resistance has also become a political position, such as with the small group of anti-vaccine and far right protesters who temporarily shut down a community vaccination site in Los Angeles. Finally, we don’t know how emerging variants of SARS-CoV-2 will complicate vaccine-induced immunity. The Washington Post quoted Dr. Christopher Murray of the Institute for Health Metrics and Evaluation as saying that “the prospect of herd immunity, at least before next winter, [is] much less likely.”

If my choice is to stay in lock down for at least another year or to get the vaccine, I am getting that vaccine. I need to hug my Dad. I need to visit with friends indoors. I need to get back the small amount of normalcy that I had in my housebound/disabled life. I will gladly continue to adhere to all prevention measures like masking, etc, of course. I just want to be able to interact with the people I love.

The bad news is that while I am currently eligible for the vaccine in my state, there is no vaccine to be had. My husband and I are on at least five waiting lists. I signed up for our county’s waiting list on the second day it was open, and there are tens of thousands of people ahead of us in line. I have twenty websites bookmarked and I check them at least once a day to see if other providers have opened waiting lists. Our county has a population of 850,000, a quarter of which is currently eligible, but the county has been getting less than 5,000 doses per week. The federal government has promised to increase supply soon, and the potential approval of additional vaccines would help tremendously. Nevertheless, I have a feeling we are going to be waiting a long, long time.

I understand that not everyone is or can be as anxious to get vaccinated as I am. Yet for most people, the vaccines are safe and highly effective. I am READY. Please, somebody vax me!

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Darkness and Light

Posted on December 21, 2020 by Jennie Spotila

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.

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Compassion

Posted on November 25, 2020 by Jennie Spotila

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.

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NIH Funding for ME in 2020: Falling Flat

Posted on November 6, 2020 by Jennie Spotila

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.

Image credit: Off the Charts, AJN

The 2020 Numbers

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).

 FY 2019FY 2020% Change
Extramural $$4,627,302$4,612,339-0.3%
Research Centers$7,381,515$7,084,646-4%
Total$12,008,817$11,696,985-2.6%

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
  • RTI: $1,149,560
  • Stanford/Dr. Davis: $750,389
  • DePaul/Dr. Jason: $613,912

Extramural Cliff

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?

2021 and 2022 use numbers in line with previous years

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.

A Confession

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.
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