Do We Ever Stop Counting?

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

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

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

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

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

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

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

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

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

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

Guest post by Mary Dimmock

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Not NICE

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

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

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

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

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

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

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

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

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

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

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The 2020 NIH Funding Fact Check

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

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

Data analysis by Jennie Spotila 2021

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

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

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

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

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

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

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

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

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

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

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#MillionsMissing Book Review: A Still Life

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

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

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

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

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

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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