FINALLY: RFA Funding Announced

This post was last updated on September 30, 2017. Edits are clearly indicated in the text.

At long last, NIH has announced the awards of RFA funding to three Collaborative Research Centers and a Data Management and Coordinating Center for ME/CFS. There is not a lot of detail about the grants in NIH’s RePORTer database, and varying levels of detail available from the successful institutions. Here is what we know at this point about the successful Centers.

Cornell ME/CFS Collaborative Research Center, led by Dr. Maureen Hanson. Receiving $9.4 million over five years, Hanson has assembled a star team. Collaborators include ME/CFS researchers Dr. Dikoma Shungu, Dr. Betsy Keller, Dr. Fabien Campagne, and clinicians Dr. Geoffrey Moore, Dr. Susan Levine, and Dr. John Chia. SMCI and Workwell Foundation are also listed on the Center website as collaborators. Dr. Shungu will lead a project using brain imaging to look for evidence of neuroinflammation and oxidative stress associated with ME/CFS. Dr. Hanson will lead a project examining extracellular vesicles for inflammatory signaling. Dr. Andrew Grimson will examine gene regulation defects in white blood cells to characterize the role of the immune system in ME/CFS. All three projects will incorporate the two-day CPET exercise challenge. The grant will be overseen by the National Institute for Neurological Diseases and Stroke (NINDS). 

Center for Solutions for ME/CFS, led by Dr. Ian Lipkin. Receiving $9.6 million over five years, Lipkin will build on his previous work on ME/CFS. According to the project abstract, samples from Lipkin’s existing ME/CFS sample repository will be surveyed for molecular footprints of potential bacterial, fungal, and viral infections, as well as autoantibodies. Another project will analyze metabolites and gene expression in individuals with ME/CFS after physical activity. In addition, existing databases will be mined for insights into clinical features, comorbidities, and sub-types. An innovative project will design a mobile app called myME/CFS that will allow people with ME/CFS to track symptoms in response to stressors and interventions. Collaborators in the center include clinician researchers Dr. Lucinda Bateman, Dr. Anthony Komaroff, Dr. Susan Levine, Dr. Jose Montoya, and Dr. Daniel Peterson. Additional investigators include Dr. Oliver Fiehn, Dr. John Greally, and Dr. Mady Hornig. The Center will also partner with SMCI, #MEAction, and the Microbe Discovery Project. The grant will be overseen by the National Institute of Allergy and Infectious Diseases.

Jackson Laboratory ME/CFS Collaborative Research Center, led by Dr. Derya Unutmaz. Awarded $10.5 million over five years, Unutmaz is a relative newcomer to ME/CFS, with only one grant and no publications in the disease. His collaboration with Dr. Lucinda Bateman and Dr. Suzanne Vernon should provide the necessary expertise. Not much information about the research projects is available yet, but the goal is to assemble, “one of the largest and most highly detailed collections of clinical and biological ME/CFS patient data that can be analyzed using novel computational technologies such as machine learning approaches.” While Unutmaz’s previous NIH grant looks at immune cell subsets, this new Center grant will expand to microbiome, metabolomic and clinical phenotypes. The Center will also partner with for “clinical tracking of the broader patient community.” That description sounds a bit ominous but the company website is focused on a mobile app. This grant will be overseen by NINDS.

Notably, each of these Centers will have some type of advisory committee made up of people with ME and caregivers. That is a huge step forward in our field, and I’m happy to see it.

The Data Management and Coordinating Center grant was awarded to Dr. Rick Williams at the Research Triangle Institute. As of this writing, there is no information in NIH’s RePORTer database about this grant, although the Office of Communications and Public Liaison of NINDS told me that it should be available soon (I’ve removed the name of the person in that office, per NIH’s request that the info be attributed to NIH and not an individual). The Research Triangle Institute does not have a press release about the grant yet, either, and Dr. Williams has not yet responded to my email requesting more information. Dr. Williams was the Principal Investigator for the NIH funding of a Data Coordination Center for the Obstetrical Pharmacology Research Network. The Research Triangle Institute is in the business of implementing and managing coordinating centers for research networks, so presumably the expertise is there. September 20, 2017: edited to add link to the project in NIH RePORTer.

Cort Johnson previously reported that there were ten applications for the Research Centers. Given that NIH stated it would fund only two or three, we knew that there would be some disappointed groups. Who were the losing groups? Based on Cort’s list and my own information, the unsuccessful applications were submitted by:

  • Dr. Ron Davis at the Genome Technology Center at Stanford
  • Dr. Nancy Klimas at the Institute for Neuroimmune Medicine
  • Dr. Lenny Jason at DePaul University
  • Dr. Dane Cook at the University of Wisconsin, Madison
  • Dr. Vincent Lombardi at the Nevada Center for Biomedical Research
  • Dr. Jose Montoya at the Stanford Chronic Fatigue Initiative
  • Dr. Janet Mullington at Harvard University and Beth Israel Deaconess Medical Center

The big surprise loser is Dr. Davis, given that he has twice before had applications turned down for review and has been openly critical of NIH. (Edited to add: see statement from Dr. Davis below) Klimas, Jason, Cook, and Montoya are all experts with significant history of ME/CFS funding and publications, so perhaps it is surprising that Unutmaz (with no ME/CFS publications and one current grant) beat them all. Without seeing all the grant applications themselves, it is impossible to say for certain.

I have a big question about the numbers involved in these grants. The NIH press release states that the investment for fiscal year 2017 will be over $7 million, and this is consistent with what Dr. Vicky Whittemore projected at the CFSAC meeting in January 2017. But here is the funding as described in the NIH database for the projects:

  • Cornell Center: $532,302, correction: $1,868,837
  • Colombia Center: $1,969,576
  • Jackson Lab Center: $517,879, correction: $2,125,950

This totals just $3,019,757, correction: $5,964,363. Where is the other $4 million? The press office at NINDS has not yet responded to my inquiry about that. Update September 27, 2017 at 3:30pm: The press office provided me with the corrected figures in italics above. The new total suggests the data center will receive approximately $1 million in 2017.

Update September 28, 2017 at 9:00am: The dollar figures are still showing some inconsistency. Here’s what I know about the awards at this point:

  • Cornell Center: The Office of Communications and Public Liaison at NINDS told me that the Center will receive $1,868,837 for FY 2017. However, the information available in NIH’s RePORTer (here and here and here and here) totals only $1,147,000. There is $721,837 unaccounted for, at this point. Update 9/28/17, 12:20pm – Dr. Vicky Whittemore confirms the $1.8 million number is correct, and there is project info not yet uploaded to RePORTer.
  • Columbia Center: NINDS told me that the Center will receive $1,969,576, and that matches what is in RePORTer. Unlike the other Centers, this one has all the subprojects linked together on one page.
  • Jackson Lab Center: NINDS told me that the Center will receive $2,125,950 in FY 2017. The information in RePORTer (here and here and here and here) matches that number.
  • Data Management and Coordinating Center: NINDS has not provided me with any information about this grant, saying only that information is uploaded to RePORTer on a rolling basis. Update 9/28/17, 12:20pm – Dr. Vicky Whittemore said the total for the Center grant is $1,260,904.

Is there money missing? Based on the publicly available numbers as I have cited above, there is $721,837 unaccounted for in the Cornell grant, plus at least $1.1 million to get us over $7 million as stated in NIH’s press release. Based on what Dr. Whittemore told me, the total funding under the RFA is $7,225,267.

STATEMENT FROM RON DAVIS, as posted on Phoenix Rising on September 28, 2017 by Janet Dafoe:

Ron says: Our grant had a number of senior scientists at Stanford, including myself, Mark Davis a world renowned immunologist, Mike Snyder, Chair of Stanford Genetics dept, ranked the best genetics department in the world, and expert in big “omics” data, Craig Heller, a world expert in exercise physiology and fatigue, William Robinson MD, expert in autoimmune and Lyme’s disease, Lars Steinmetz, an expert in complex genetics and mitochondria, as well as scientists from other universities, including, Robert Naviaux, USCD, world renowned expert in metabolomics and mitochondria physiology, Curt Scharfe, Yale Univ, expert in mitochondrial genetics, Wenzhong Xiao, Harvard, expert in bioinformatics and big data analysis, Robert Phair, CEO of Integrated Biioinformatics, Inc, which models complex biochemical pathways, Lucinda Bateman, of the Bateman-Horne Center, one of the foremost ME/CFS experts in the country, and Susan Levine, another well-known ME/CFS physician.

One of the major complaints was that I had no publications on ME/CFS. One of the criteria of this RFA was to bring new people into the field, which is impossible if reviewers exclude investigators without prior publications. The team I put together would be phenomenal for this field. All of us have experience and a myriad of publications that are directly relevant to the study of ME/CFS.

The review complained that our institutional environment was “mediocre”. The Stanford office that reviews all Stanford grants told me that they had never seen a Stanford rating anywhere close to that low in their entire history. It’s absurd to think that Stanford is not an excellent institutional environment.

They argued that my involvement with OMF constituted a conflict of interest. In fact, our interests are aligned, not in conflict! This is mystifying given the fact that the RFA required applicants to work with an NGO.

They didn’t like our nano needle instrument. They said it’s probably only measuring cytokines, but there’s no data for that. They said it wasn’t certified as government-approved for medical use with patients. This was mystifying because one of the aims of the grant was to develop the nano needle for medical use!

They complained that Janet was part of the community outreach part of the grant because she is my wife.

They said I had a conflict of interest because my son has ME/CFS.

They didn’t like it that I had put out videos with preliminary results and ideas to the patients on PR and elsewhere because it was unpublished and not peer-reviewed.

There were a number of other criticisms that were mostly about scientific issues, that were mostly wrong. For example, we were proposing to use IPS cells, which they said wasn’t validated, but in fact, it’s used extensively and it’s being used in the NIH Intramural study!

This is not a complete list, but I think you can get the picture from these examples.

We of course will continue to write grants until NIH funds us (we are submitting an R01 grant on Oct 5), and we will continue to actively work with OMF to raise private donations, but this is definitely a big setback. I was especially sad on Monday when Whitney was communicating with us on ativan and he cried in pure anguish, knowing that we can’t help him as fast as I’d like to.

I’ll update this entry with additional information when it becomes available.

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CDC Website Update

In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website.

In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now ME/CFS by CDC. This new website, intended for the general public, is a significant improvement over the previous site. An update for health care providers is planned for the fall. Together, these could begin to change the medical misunderstanding and mistreatment that people with ME have had to endure. But CDC will need to do more – both on its website and in dissemination to the medical community – if ME patients are to get the clinical care they need and deserve.

Back Story

For at least a decade, patients, advocates, disease experts, and members of Health and Human Service’s (HHS) CFS Advisory Committee (CFSAC) have highlighted serious concerns with CDC’s CFS website. Inappropriate information included the disease description, the name, the recommended diagnostic criteria, suggestions of a psychogenic basis, and the treatment/management recommendations, which have included those for graded exercise and cognitive behavioral therapy (CBT) based on a psychogenic view of the disease.

The feedback resulted in some website changes. However, CDC did not remove the contentious CDC CFS Toolkit in spite of a June 2012 CFSAC recommendation to do so. Claims that child abuse was a risk factor remained, despite strong criticism of the methods used in the supporting study. CDC also continued to recommend CBT and graded exercise therapy (GET) as management approaches in its CFS Toolkit, in its continuing medical education (CMEs), and on its CFS website, directly supported in places by studies like the PACE trial.

In August 2015, following the release of the 2015 National Academy of Medicine (NAM, previously the Institute of Medicine or IOM) report, CFSAC issued a set of targeted recommendations for clinical education materials to clarify the physiological nature of ME, the range of symptoms, its differential diagnosis, the inappropriateness of CBT and GET, and the importance of clearly distinguishing between the overly broad Fukuda diagnostic criteria for CFS and the new criteria that the NAM had proposed.

Shortly after publication of the NAM report, the CDC archived the CFS Toolkit and removed the CME that had referenced PACE to support its recommendations for CBT and GET. Subsequently, CDC conducted a initiative in 2016 to get stakeholder input on a new website. Stakeholders included disease experts, patients, patient advocates, two medical education providers (UpToDate and Healthwise), and representatives of about a dozen medical associations. Each stakeholder provided input through one survey and a one-hour teleconference, followed by a one-day face-to-face meeting, during which participants reviewed the collated input.

The patient advocates involved in this initiative expanded upon recommendations made in the 2015 CFSAC report and provided extensive feedback on the issues with the existing CDC CFS website. Stakeholders did not see plans for the final website before it was released. Final decisions on the website were made by a steering committee comprised of CDC and other HHS staff.

Notably, in parallel with this initiative, journalist David Tuller of Berkeley published his extensive 2015 series on the PACE trial which led to a cascade of articles and letters by academics and others criticizing the trial conduct and its conclusions. These criticisms amplified the concerns being raised by patients in the stakeholder initiative.

What’s Good with CDC’s new Website?

The new CDC ME/CFS website incorporates a number of changes that address some of the most contentious issues. The most significant is that CDC no longer recommends CBT and GET on the site itself and no longer suggests that the debility of the disease is due to a patient’s beliefs, behavior, or deconditioning. Further, diagnosis focuses on hallmark symptoms such as post-exertional malaise (PEM). The non-specific Fukuda definition, which does not require these hallmark symptoms, has been removed. These are important because the combination of Fukuda and recommendations for CBT and GET have resulted in misdiagnosis and medical disbelief and mistreatment.

Other important updates include a change from the name “CFS” to “ME/CFS” and a more accurate representation, in both words and images, of the serious nature of the disease. The site also gives better information on prevalence, economic impact, loss of function, and that patients can be bedbound and sick for years. Finally, CDC removed statements about childhood trauma as a risk factor along with references to the Georgia study and related publications. These studies used the Reeves definition, which the 2015 NAM report had dismissed because it included an “overrepresentation of individuals with PTSD and depression.”

More Work is Needed

While the new website is better, further work is needed before the website is rolled out to health care providers. For instance, while more accurate, the descriptions of the disease and of PEM are still weak. The impact of cognitive impairment is not adequately described and important neurological symptoms are missing altogether. Information about the poor prognosis, the severity of the disease, and severely ill patients is woefully inadequate. As one severely ill patient observed, the website “sugar coats” the disease and he doubted any doctor would recognize severely ill ME patients from what is on the new website.

Diagnostically, CDC’s new website emphasizes PEM but then in some places makes PEM optional for a diagnosis of ME. The pediatric section doesn’t even mention PEM by name. This vagueness about the disease’s hallmark symptom will perpetuate the diagnostic ambiguity that exists today.

The treatments section is still inadequate and in places potentially harmful. Most noticeably, while individual sections are included for the treatment of a number of symptoms, the site does not have a section specific to the hallmark PEM. The discussion that is provided on managing PEM doesn’t mention PEM by name and doesn’t discuss energy impairment or the use of pacing as the key management tool. The recommendations for yoga and tai chi lack appropriate caution for severely ill patients and the generic recommendations for sleep hygiene (such as only using the bed for sleep and sex) are inappropriate and potentially harmful for those who may be bedbound or spend their days laying flat to avoid exacerbating their symptoms. Finally, while the website does not recommend CBT and GET, it inappropriately provides a link to the Alberta Guidelines for ME/CFS which still do.

What About Health Care Providers

While perhaps not as critical for the general public, health care providers need additional information on the multi-system biological pathologies, the potential complications, and the need for a strong differential diagnosis, especially for those conditions, such as primary psychiatric illness and somatoform illness, that have been conflated with ME. Health care providers also need specific guidance on the use of drugs to help manage ME symptoms and about ME-specific considerations for surgery, hospitalization, pregnancy, and immunization.

While CDC has removed recommendations for CBT and GET, CDC told David Tuller, “We continue to believe that exercise can be useful for some ME/CFS patients.” This is concerning as CDC has not stated the specific type of exercise, the specific benefit to be gained, the risks to patients at different levels of severity, or the evidence that supports those recommendations. To protect ME patients from the known risk of harm from exercise, any recommendations for exercise or activity must explicitly address each of these issues. Generic recommendations, such as those currently provided for sleep hygiene, must be avoided.

A full review of the CDC website is available here and has been sent to the CDC. To both protect people with ME and expedite their access to the care that they need, it is essential that CDC address these issues prior to releasing the health care providers update this fall. Further, to ensure accuracy, CDC must seek and incorporate feedback from a panel of established ME disease experts, such as those involved in its multi-site study, prior to this release of its health care provider update.

Beyond the Website

While not a website issue, CDC must also revise the material it provided for medical school curricula through the MedEd Portal. The video is simply dreadful, and both the video and the supplementary material still include Fukuda for diagnosis. Both must be revised or be removed.

CDC also must resolve the problems with its classification of this disease in the ICD-10-CM, which is used in medical records. Today, US medical providers use the term “CFS.” But CDC moved “CFS” out of the neurological chapter (where the World Health Organization placed it) and instead equated it to the symptom of chronic fatigue. This has had a negative impact on not only disease tracking but also on insurance reimbursement, which impacts patients’ access to care and doctors’ ability to treat patients. Doctors need to be appropriately reimbursed for the extended time spent caring for ME patients.

Finally, even if it were perfect, the CDC ME/CFS website is just that – a website. As the 2015 NAM report stated, the most significant problem is not lack of medical provider knowledge but rather the negative attitudes of medical providers toward ME. To make a difference in the care that patients receive, CDC will need to have a proactive dissemination plan to counter the widespread medical stigma, misinformation, and deep misunderstanding that have developed around ME/CFS in the last thirty years. CDC and its HHS partners must use their leadership position with the public and especially with the American medical community to proactively pave a new path to quality clinical care for people with ME.

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Unrest: Movie Review

Spoiler alert: This review discusses some specific scenes from Unrest.

Edited to add: No, really! There are SPOILERS here! If you want to see and experience the film with a blank slate, then go see the film and come back here afterwards to share your thoughts.

Photo courtesy of Unrest.

Unrest, Jen Brea’s much anticipated film about ME, premieres in select US theaters on September 22nd, and expectations are high in our community. For the first time, people with ME will be represented on the big screen, and then on PBS in January 2018. I’ve had the opportunity to preview the film, and it was an intense emotional experience. The open question is how non-ME literate audience members will respond, and what conclusions they might draw from the film.

As I noted during Brea’s Kickstarter back in October 2013, the quality of storytelling in the film would be its strength. Brea says in the film that we are “constantly telling ourselves a story about who we are and where we are going.” Brea made distinct, conscious choices in telling this story. The focus of Unrest is primarily Brea’s personal journey with ME, supplemented by the stories of Jessica, Leeray, Karina, and Whitney.

There is no doubt that Unrest is a beautiful film. The visuals are gorgeous, and the soundtrack is absolutely wonderful. I am not at all surprised that Unrest is winning prizes at film festivals, and it clearly merits the theatrical and television release. As “just” a movie, Unrest nails it.

Unrest clearly portrays ME as a serious disease, not just fatigue. The movie opens with Brea filming herself as she crawls across the floor because she is too sick to walk. Brea manifests many neurological symptoms, and allows herself to be filmed in her most vulnerable moments of crashing. The depth of suffering experienced by each of the featured people with ME is clearly, even shatteringly, conveyed. I was also moved by the imagery Brea used to show what it is like to have your life shrink to the boundaries of your bed or your home. She says, “It is like I had died, but I was forced to watch as the world moves on.”

In choosing to focus on personal narratives, Brea necessarily excluded many other stories. Anyone who comes to the film with a checklist of what they want to see in a film about ME may be disappointed. Unrest does not discuss the controversy over case definition. There are hints of the problems we face with CDC and NIH, but no mention of recent political controversies like the National Academy of Medicine report, Pathways to Prevention, or the CFS Advisory Committee. The science of ME is discussed primarily by Dr. Nancy Klimas and Dr. Ron Davis, but briefly. The same is true of treatments, although Brea does an excellent job of portraying all the things we try in our desperate search for answers in the absence of large scale research. The PACE controversy is glaringly absent. There is also a brief but powerful discussion of the history of hysteria and conversion disorder, accompanied by a tortuous sequence of vintage photos of women suffering from illness.

Any one of these missing or briefly discussed themes would require an entire film to adequately explore. Brea chose not to make those films, and I understand the choice. Her goal was to tell a compelling story that emotionally engages the audience, especially an audience that does not know anything about the disease, and she had to select the story elements that would accomplish that goal. I think ME literate viewers may find it helpful to remember they are hearing Brea’s story laid out for people who have never heard about ME, as well as people who think we are depressed, malingering, or tired.

It’s natural for us to want and expect to see our own stories represented on screen. I think, though, that we should be careful about these expectations. I heard a great quote on the podcast See Something, Say Something during a discussion about racial and religious representation in tv shows:

We’re happy to suspend disbelief for [white] shows and then when it’s a person of color, we’re like, ok, you must get every element of every part of my life exactly right or I will burn you.

We are a community of people who have been left behind. It is understandable that we want to see ourselves in this story. However, I don’t think the question is whether Unrest perfectly represents every part of our experiences of life with ME. The question is whether Brea is effective in telling the story that she intended to tell.

The emotional heart of Unrest is Brea’s relationship with her husband, Omar Wasow, and this was the part of film that hit closest to home for me personally. Their “normal” is not at all normal; the disease eclipsed the plans they had and the people they were. At her lowest, Brea says to Wasow, “I’m nothing. I can’t give you anything.” I have said that to my husband. Later in the film, Wasow tells her, “If I can talk to you, if I can hold you tight, I’m good.” My husband has given that gift to me for the more than twenty years I’ve been sick. And ever since he had his stroke, I know what it means to offer that in return.

As Brea finds her way to living her new life, she says, “No one is coming, because no one knows I went missing.” She realizes that she has to fight on her own behalf. This is the seed of #MillionsMissing, and Brea showcases the activism that is now defining our community. The breadth of the international ME community is also acknowledged. It is empowering to watch, but it’s bittersweet against the backdrop of such ongoing suffering.

Despite how much she wants to be well, Brea says she could never give back what this disease showed her. She says she is grateful for every inch of her life. I think the one way the film’s storytelling could have been stronger is if she more clearly articulated why she is grateful for a life with ME. I worry that people who have never faced disabling chronic conditions will not be able to reconcile the depth of her suffering with her statement of gratitude.

I asked Brea about this after one of the film screenings. She said that in the early years of her illness, she felt like she was “falling down a deep well” and she only thought about how she could get out. But now she is so grateful to be alive and to have the capacity that she does have, much more so than she had ever been grateful for her healthy life. Brea said she is grateful for the lessons of this disease, especially the importance of focusing on her most essential relationships and experiences. Perhaps it is just my own personal interest in this transformation, but I wish she had spent more time on this in the film itself.

The audience of Unrest, at film festivals and on PBS, is not just the community of people with ME. Brea’s audience is people who know nothing about ME or who have misconceptions about it. If this film is the first (or only) thing that audience sees about this disease, what will they take away? What conclusions will they draw about all of us, based on this story of some of us?

I think that those who knew nothing before seeing the film will be shocked at the severity of the disease and the dearth of scientific answers. Those who hold harmful stereotypes about people with ME may not have their minds changed by the film. However, if a broader audience hears the truth about ME, it will be more difficult for the tired-depressed-get-some-exercise meme to hold sway.

Brea says, “You can disappear because someone is telling the wrong story about you.” Early in the film, as we watch Brea struggle to crawl or sit up, she says she is filming herself because “someone needs to see this.” Incredibly – amazingly – Brea has succeeded. People will see this, and I hope they will be as moved by it as I am.


Disclosure: I was interviewed for the movie, and appear in a brief cameo with Wilhelmina Jenkins in the final version of film. I supported the Kickstarters Jen Brea conducted for the film and the #TimeForUnrest campaign. I have received no compensation for either my interview or this review.

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My “Summer Vacation”

What I’ve done on my “summer vacation” has not been fun. I’ve had a rough couple of months. Non-ME health issues have gobbled up most of my capacity, and I’m still feeling the repercussions.

I’m not ready to talk about the details of those new health problems, but I can say that I am doing ok now. It’s been a physical and emotional roller coaster. Dealing with these problems has also consumed a great deal of healthcare resources, as well as physical and emotional support from our family and friends.

With so much energy going towards day to day survival, the blog has suffered. So has my activism. I’ve been unavailable for advocacy projects, and I also had to withdraw from the NIH’s Common Data Elements project. I’ve also been forced to delay two large projects that I thought would be my focus in 2017. And I have not kept up with my friends the way I usually do.

But it is what it is. Here are some things I learned this summer that have helped me. Your mileage may vary, of course.

Don’t assume everything is ME. For many years, ME was my only health problem. But additional diseases are basically inevitable as we get older. If you have new symptoms, discuss it with your healthcare provider. Don’t dismiss it as a weird ME thing or complication. Sometimes, those symptoms indicate a new condition, and a careful diagnosis should be made.

Keep up with preventive care and monitoring. Are you getting your mammograms, colonoscopies, pelvic exams, etc? If your doctor recommends regular testing for a condition, keep up with that testing. Even if you feel fine, even if other things are going on, even if you are sick of going to the doctor, keep up with your regular testing schedule.

Don’t assume your non-ME expert healthcare team will dismiss or disparage your ME. I’ve interacted with a number of new doctors this summer, and I expected them to ignore my ME and the way it might affect my treatment. I was wrong. Every doctor and nurse took my concerns seriously. One doctor has been especially attentive to the impact of the new health issue on my ME, and has proactively discussed how we can take that into account.

You’re gonna need help. Getting evaluated and treated for my new health issue has been an enormous drain. Spending spoons on extra appointments meant that there were fewer spoons available for every day tasks like ordering groceries, cooking, and managing errands. Since my husband is disabled as well, there was no one in the house to pick up the slack. I tend to resist asking for help, but we really had no choice this summer. So I got over myself and asked our family and friends. They stocked our freezer with meals for weeks. They came to the house to help us out. And they showed up for us emotionally, too. We would have really struggled without their support.

Triage your life. When a person is brought to the emergency room, a nurse does triage: are you breathing? do you have a pulse? are you bleeding? are you in pain? I’ve been applying the same kind of approach to my life by starting with the most essential questions. Do we have food? Does the dog need to go out? Are the bills up to date? Do we have clean clothes? What doctors are we seeing this week? First, I go through those essential questions and deal with any tasks. Only then do I move on to the next level of tasks or activities. That way, when my energy is completely used up, at least I know that the most essential needs have been addressed.

Self-care is non-negotiable. Keeping a positive frame of mind when your life resembles a dumpster fire is, obviously, quite a challenge. But I learned this summer that self-care is mandatory when you are dealing with a tidal wave of bad news and challenges. Everyone’s self-care is different. For me, it is playing the cello and knitting. I know people who give themselves manicures, binge watch trash tv, or sit on the porch with a book. Do whatever helps you relax. My goal has been to ride the tidal wave without sniping at people, complaining incessantly, or feeling sorry for myself. Some days, I have even managed it!

Be patient. This has been a shitty summer, and it caps off a really shitty two-plus years. I was catching up with a friend the other day, and every time she said “That’s horrible!” I would say, “I’m not done yet!” It’s been ridiculous, but it is also temporary. The one thing I know for sure is that things will change. Maybe for better, maybe for worse. Some challenges might be met and mastered, and new ones may arise. But it’s also possible that we will get a break, and have some time when nothing new goes wrong. I’m not in control of life. None of us are.

This summer has taught me that I can only do my best each day, and hope for better times.

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Funding Unrest

Photo courtesy of Unrest

Four years ago, I wrote that Jen Brea’s film, then titled Canary In A Coal Mine, could be a defining moment in ME advocacy. Today, we stand on the threshold of a watershed moment for our disease, and Jen is asking for our help.

Jen finished her film, now titled Unrest (here’s the trailer), and it is very very good. The film has won awards at Sundance, River Run, Nashville Film Festival, and the Sheffield Doc/Fest. Not only that, but the film will be released in select theaters this fall. AND the film will also air on PBS Independent Lens in January 2018.

Think about that for a minute: a film about ME is winning awards, will air in theaters and will be shown on PBS. As an ME activist for close to twenty years, I can honestly say that I have only dreamed of this kind of publicity.

Back in October 2013, I was impressed by Jen’s approach to storytelling. I wrote:

What makes people want to support this film is the intimate connection with Brea and others featured in it. It’s the story that pulls you in, and the story that makes you want to do something to help. If that’s true of the Kickstarter, it can be true of the film. And that could be a defining moment. We’ve longed for and dreamed of widespread public attention to the realities of having ME/CFS. Canary In A Coal Mine could deliver. . . . I would like to believe that the galvanization of our movement is at hand: that our story will be HEARD and SEEN. I would like to believe that change is coming.

That moment is here.

In conjunction with the film’s theatrical release, Jen and her team are launching #TimeforUnrest. This is an impact campaign to mobilize the public, educate health care providers, and inspire new researchers to enter the field.

Ambitious? Yes. Possible? Given Jen’s track record so far, absolutely! Over the past four years, Jen has repeatedly demonstrated her commitment to high quality work, and informed, action-oriented activism.

Here’s what you can do: check out the Kickstarter campaign and donate if you can. Whether you are able to contribute money or not, spread the word to your family and friends. There are 13 days left to go, and a little over $40,000 to raise (as of August 12th at 12 pm).

We helped Jen make this film. She leveraged our resources to get support from many many others. Now she is offering us not only a great film, but the structure to leverage the film into the social change we need so desperately.

I want everyone to see Unrest, but I especially want health care providers to see it. I want people who doubt the reality of ME to see it. I want a wave of public compassion and commitment to action to crash down on NIH and force a meaningful, sustained response to this public health crisis.

I’ve been sick for almost 23 years, and I have come to recognize that I will never regain much more function than I currently have. My activism is now about forcing change so that someone who has just fallen ill will not be sentenced to a life of being unable to fulfill one’s full potential. This is our moment. It’s time for unrest.


Disclosure: I am a financial backer of both the film Kickstarter and the current #TimeforUnrest Kickstarter. I was also interviewed for the film.

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , | 11 Comments

Those CDC Documents

Last month, I wrote about CDC wanting to charge me over $200 for documents I had requested under the Freedom of Information Act. I was looking for information on how much CDC had spent on the Institute of Medicine (now National Academy of Medicine) contract to devise new diagnostic criteria for ME/CFS.

As I wrote then, I did not have the resources to invest in getting the documents from CDC. However, after I wrote my post, the Solve ME/CFS Initiative offered to cover the costs of obtaining the documents from CDC. Thanks to SMCI, I can now report the results.

CDC identified 760 pages of documents responsive to my request. They released 201 pages to me, with very few redactions. The other 559 pages were sent to the main HHS FOIA office for their review prior to release. When this has happened in my previous requests, it usually indicates that the ownership or authorship of the documents resides at HHS.

The documents I received to date reveal that Dr. Nancy Lee (then from the Office of Women’s Health, and Designated Federal Officer of the CFS Advisory Committee) had originally asked CDC to issue the IOM contract under its standing contract with the Institute. In an email from August 14, 2013, she said, “”If CDC can get this thru for us, we owe you big!”

Not everyone at CDC was happy about it though. Dr. Steve Monroe, who at the time was deputy director of the National Center for Emerging and Zoonotic Infectious Diseases at CDC, wrote to other colleagues in leadership at the Center on August 14th. Explaining the proposed contracting arrangement, Dr. Monroe said, “Bottom line: we didn’t volunteer to play this role. . . . are ‘we’ willing to use our time/energy/chits to push this through at the 11th hour? . . . it would be nice if program could get something for their efforts.”

Through the month of August, there were many emails among CDC employees as they worked through the red tape to issue the contract. There are several places in those emails that reference “the Secretary,” such as, “the Secretary is requesting this study.” That suggests the possibility that the decision to commission the IOM study came from the very top – Secretary Sebelius.

CDC employees pushed the contract through their system, obtaining approvals from a variety of offices. But on September 3rd, Caira Woods from the Office of Women’s Health notified CDC that the IOM contract would be accomplished another way, and CDC’s help was no longer needed.

This chain of events is a little odd when viewed in the full context of the IOM contract controversy. The Office of the Assistant Secretary issued a notice of intent to award a sole source contract to IOM for the diagnostic criteria project on August 27th while CDC was still processing the request internally. Advocates found the notice, and it ignited a massive effort to protest the contract because it was being done without our knowledge or input. Woods called CDC to cancel that effort on September 3rd, but then on September 4th, the solicitation for the sole source contract was also withdrawn.

By September 17th, we knew that the IOM contract was going forward despite our mobilization against it. On September 23rd, the Office of Women’s Health announced that the contract had been signed. When I obtained the Statement of Work on September 30th, it became clear that OASH had turned to NIH to issue the contract through its umbrella arrangement with IOM. How and why that decision was made is still unclear to me. We may never get the documents that explain what really went on behind the scenes.

I started on this line of inquiry back in March 2014 with a very simple question: who paid for the IOM study? The Frequently Asked Questions document published by CFSAC stated that “almost all the agencies” contributed to the study. Through a number of FOIA requests, I’ve assembled the following totals:

Agency for Healthcare Research and Quality $100,000
Centers for Disease Control $150,000
Center for Medicare and Medicaid Services $0
Food and Drug Administration $150,000
Human Resources and Services Administration $0
National Institutes of Health $100,000
Social Security Administration $50,000
TOTAL: $550,000

The IOM contract totaled $1 million, so I assume that the remaining $450,000 was covered by the Office of the Assistant Secretary, but I do not yet have any documentation to prove that. But if OASH was not the source of that $450,000, then who was?

There is one other mystery: what is in the 559 pages that CDC referred to the main HHS FOIA office for review prior to release?


My thanks to Carol Head and SMCI for making it possible for me to obtain these documents from CDC.

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Grant Review

Disclosure: I participated in the preparation of one of the Collaborative Research Center applications.

Today and tomorrow, the applications for ME/CFS Collaborative Research Centers and Data Coordinating Center are undergoing peer review at NIH. It’s a very important stage in the decision making process, and competition is tight.

If you look at the roster for the review panel, you will undoubtedly recognize some names. There are nine ME experts on the panel, out of twenty-six total members. Because there is a great deal of overlap among ME experts, I reported on NIH’s management of potential conflicts of interest in grant review.

Peer review is incredibly important at NIH. The review panel is comprised of scientists with relevant expertise. They score the applications on a variety of criteria, and come up with an overall impact score “to reflect their assessment of the likelihood for the project to exert a sustained, powerful influence on the research field(s) involved.” The final calculated score ranges between 10 and 90, with 10 being the best possible score. Applicants can access their scores three days after the meeting, or no later than August 1st in this case. Summary statements, which include reviewer comments, are available about thirty days after the meeting.

But the scores are not the end of the process. The rest of the decision making happens within NIH. Program staff prepare funding recommendations based on scores, comments, and the Institutes’ overall research priorities. Those recommendations are presented to the Institute Advisory Councils, which review the material in light of the Institutes’ goals and needs. The Council recommendations go to the Institute Director, who makes the ultimate decision on which grants are funded.

The Council stage in our case is a little complicated. There are ten Institutes contributing money to the RFAs, but it seems unwieldy to present recommendations to all ten Councils. NINDS is listed first on both RFAs, and Dr. Vicky Whittemore is the research point of contact, so I am assuming that NINDS Council and Director will be presented with the recommendations. However, NIAID is contributing the same amount of money as NINDS ($2 million per year for five years), so it is possible that NIAID Council will also be consulted.

The dates of the Council meetings are important to note because it creates a very tight deadline. The NINDS Council meeting is September 7-8th. The NIAID Council meeting is on September 11th. Final award decisions must be made immediately afterwards because the fiscal year ends on September 30th. Dr. Whittemore has said that they hope to get Notice of Award letters out before that date.

There is one more item, tucked almost out of notice. Another meeting of the CFS Special Emphasis Panel will be held on July 31st. I can only assume that this group will review applications submitted under the general funding opportunity, and not under the RFAs.

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 10 Comments

Pediatric Primer Not For Prime Time

Guest post by Denise Lopez-Majano

Young people with ME face huge difficulty in finding knowledgeable healthcare providers because there is only one full-time pediatric ME specialist in the United States, and he is unable to take on any more patients.

So I was very hopeful that the new pediatric primer – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer – would better equip pediatricians to diagnose and help young patients with ME. After all, the primer’s authors include most of the world’s pediatric ME specialists, each of whom have decades of experience and insight regarding ME.

Unfortunately, for a number of reasons, I do not think the pediatric primer is ready for prime time.

There are some things the primer does very well:

  • The Etiology and Pathophysiology section is very thorough and clearly states this is a multisystem physical disease.
  • The primer addresses the differences between ME and factitious disorders, pervasive refusal syndrome, school refusal, and somatoform disorder. This is critically important given the number of young patients who have been referred to social services or even removed from the home.
  • The “Pediatric ME/CFS Diagnostic Worksheet” ensures that frequency and severity of symptoms is recorded.
  • Table 5, “Symptom comparison between depression/anxiety disorders and ME/CFS in children and adolescents,” clearly shows the differences between ME and depression/anxiety disorders.
  • The section on the very severely ill has good suggestions to help make hospitalization easier.

However, there are serious flaws and deficits in the primer that must be corrected before it receives broad distribution.

First of all, the primer uses problematic language to describe people with ME:

  • “Severely ill young patients are often difficult to manage….” (p.24) This statement is completely inappropriate. It is NOT the patient who is difficult to manage. It is the disease that is difficult to manage.
  • The section on “Very Severely Affected Patients”states “These patients are fortunately, relatively rare.” (p.24) The truth is we do not know how prevalent they are. Severely ill patients may be less likely to go to pediatricians or participate in the very few pediatric studies conducted to date. There have been no prevalence studies in pediatric patients. Until we have good data, no one can know the prevalence of severely or very severely affected patients.
  • “A child or adolescent affected with ME/CFS presents challenges for the entire family.” (p.26) Again, the patient is not a challenge, and should not be made to feel this way. The disease is a challenge, not the child afflicted with it.
  • “A patient’s needs early in the illness might differ from her/his needs in later years, as health improvement is being achieved.” (p.17) This implies that all patients improve, and ignores those who do not. Claiming that all patients improve could have a negative effect on those who don’t, especially in the context of working with pediatricians not expert in ME.

Second, the primer presents confusing and mixed messaging on the diagnostic criteria for ME:

  • The suggested diagnostic criteria do not match any existing case definition. Instead, the authors base their criteria “on their collective experience and insight.” (p. 6) While the authors’ collective experience is incredibly valuable, creating yet another set of diagnostic criteria only adds to the existing confusion we already face.
  • Furthermore, the core symptoms listed on page 6 differ from those in the fact sheet about ME (p.35). These inconsistencies will make it virtually impossible for non-expert pediatricians to accurately diagnose ME.
  • Too many terms are used for what happens when patients exceed their activity levels and they are worse off than usual: post-exertional worsening of symptoms, post-exertional malaise, post-exertional collapse, post-exertional relapse, post-exertional flare-up, post-exertional symptom exacerbation, post-exertional exacerbation, symptom flare-up, crash, etc. In fact, the section on “Fatigue, Post-exertional Symptoms, Exercise Intolerance” (p.15) does not even use a name for this cardinal feature of ME. The authors need to decide on and use one name consistently to emphasize the significance of this cardinal symptom of ME.
  • The primer discusses a number of the case definitions currently in use, but then dedicates an appendix to the Fukuda definition. Detailing Fukuda in its own appendix perpetuates its inappropriate use. This is harmful because Fukuda does not require post-exertional worsening of symptoms, even though this worsening is part of the core criteria in the primer. The authors even acknowledge that Fukuda “can exclude some young patients with ME/CFS and include others, who are later found to have another illness.” (p.6) Why these distinguished authors would highlight Fukuda over other case definitions, despite the flaws they point out, is a mystery to me.

Third, improvements are needed in the discussions of educational and social issues:

  • The section on severely affected patients (pp. 24-25) should discuss the importance of trying to develop/maintain social connections. It should also emphasize that while pediatricians should feel there is reason to hope for improvement, they should never lay the blame on patients who don’t improve.
  • There should be greater emphasis on cognitive exertion as a possible cause of the worsening of physical and cognitive symptoms. It needs to be made very clear that this disease imposes cognitive limits that vary greatly from day to day, and from patient to patient, and cognitive exertion can impact a patient just as much as any physical exertion.
  • It should be emphasized that, for those able to continue schooling, educational courses must be at the student’s intellectual level. It should also be stressed that even though providing these accommodations may be more challenging for schools than putting the student in a class they could more easily pass, doing so would be intellectually frustrating for the young patient.
  • The primer states that “education is a key issue that improves their ability to function regardless of whether or not they recover.” (p.26) I agree that education is critically important, but there are scarce data actually showing that education improves functional outcomes.
  • “IQ scores might be lower than the scores of healthy peers.” (p.27) Properly administered tests will show that scores are artificially low because of impaired processing speed and impaired working memory, etc. Pediatricians (and others) should not be led to believe that the young patients have lower IQs or are less intelligent that their peers. The intelligence is still there; the ability to perform tasks at the same speed or in the same way as others is the problem.

We all want this disease to be taken seriously by pediatricians, and we desperately need more pediatricians who can help young people with ME. As much as I want to share the primer far and wide, I am reluctant to do so in its current form. The primer does not convey consistent information clearly enough to help pediatricians understand this disease and its impact. Don’t get me wrong. I truly appreciate the work of the primer authors. But I think the primer wasn’t ready for publication. I hope there is a revised version soon, so we can truly equip pediatricians to diagnose and manage ME in young patients.

Note: Comments are closed as of August 13, 2017 due to a large number of spam comments.

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Best In Show Blog

I am excited to announce that for the third time, Occupy ME has been nominated for the Best In Show Blog award in the WEGO Health Awards!

Now we enter the part of the process where you can influence the outcome!

WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. WEGO says that this is the world’s largest network of patient leaders, working across almost all health conditions.

The WEGO Health Awards were created to celebrate and empower the patient voice. There are sixteen award categories, and these are the only awards across all conditions and platforms. The idea is to recognize the patient leaders who raise awareness, share information, and support their communities.

Giving voice to what it is like to live with ME is why I started my blog five years ago. Since then, we have witnessed an explosion in ME activism and storytelling. My goal is to support your activism with insider information, analysis, and action. I give you my opinion, and I have also hosted a number of guest posts so that you can hear from your fellow advocates. Occupy ME is about speaking truth to power, and empowering ourselves.

I am honored to be nominated for the third time! I was a nominee in 2015 and a finalist in 2014. Now I hope you will help endorse me for the Best In Show Blog award. The top three nominees with the most endorsements will become finalists, and two additional finalists will be selected by the judges. Here’s how you can help:

Click here to go to my WEGO Health Awards profile and click endorse under my photo. Voting is open until September 1st, and the winners will be announced in mid-October.

So if you like what I do here at Occupy ME, or if you have ever used my writing in your own advocacy, please endorse me for the award. And while you are at it, endorse Tom Kindlon for Best in Show: Twitter. This is all about raising the profile of ME in health advocacy!

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NIH Attitudes Affect Policy: A Story In Two Parts

The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to catalyze research and how NIH attitudes about ME are interfering with that. There is a toxic stereotype in play: that people with ME are responsible for the current situation. I believe that as long as that stereotype is held by people in positions of power, we face a slow and uphill battle to obtain the research funding that is so desperately needed.

Part One: You Have Disappointed Me

In November 2016, Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative secured a brief meeting with NIH Director Dr. Francis Collins. They reported that it was a positive discussion, but emails I obtained through a Freedom of Information Act request reveal NIH’s intention to manipulate the encounter.

This meeting with Dr. Collins occurred in the immediate aftermath of Dr. Edward Shorter’s controversial talk at NIH. The ME/CFS community had expressed outrage after learning that NIH had invited Dr. Shorter, because he espouses the disproven psychosocial theory of ME and demeaning views of people with the disease. The talk proceeded over our objections, and all sides were still smarting from the controversy when SMCI met with Dr. Collins.

The emails show that Dr. Koroshetz, Director of the NINDS and Chair of the Trans-NIH ME/CFS Working Group, was angry about the controversy. In responding to Dr. Collins’s request for updated information on the RFA and intramural study, Dr. Koroshetz wrote:

I was pretty upset with Solve ME/CFS for making such a huge fuss over the seminar at NIH by the historian from Canada. If you can impress upon Carol and Zaher the importance of Solve ME/CFS joining with the research effort and not inciting mistrust at every twist and turn that would be helpful. Mainly I am worried that researchers will shy away from studying ME/CFS if they are subject to one attack after another due to the strong biases that are out there. Funding could be for naught.

This email blew my mind because it is loaded with . . . I was going to say inaccuracies, but that is too mild a term. First of all, SMCI did not “incite mistrust.” NIH did that all by themselves when they extended the invitation to Dr. Shorter and then offered only a vague not-quite-an-apology. Second, Koroshetz is perpetuating the myth that no one will want to study ME if they are “attacked.” I guess that’s why no one studies autism or HIV/AIDS, because those activists are pretty rowdy. And the “strong biases that are out there are best described as PACE-Gate and the psychosocial theory of ME. Perhaps Dr. Koroshetz and others should be more concerned about the biases and attacks directed at people with ME, instead of biases held by people with ME.

Dr. Collins did not immediately buy Koroshetz’s take on the controversy. He responded:

Walter and Vicki, did Solve ME/CFS specifically stir up trouble for Dr. Shorter? I got a bunch of e-mails about this from ME/CFS advocates, but didn’t see Solve ME/CFS fingerprints on there. I certainly agree that this kind of behavior is counterproductive to the collaborative effort we are trying to create.

When other disease groups protest disproven, antiquated and misogynist views that interfere with scientific research, how is that perceived? Are they “stirring up trouble”? Are they being “counterproductive”? As I said last November, it is unthinkable that NIH would offer a platform to someone who spoke about people with HIV/AIDS the way Shorter talks about people with ME. Yet NIH seems to think that we are the problem, and if no one wants to research our disease then we just have ourselves to blame.

In response to Dr. Collins’s question, Dr. Vicky Whittemore forwarded him (without comment) SMCI’s November 7th email asking advocates to denounce the Shorter invitation. That email actually asked advocates to contact members of Congress, by the way, not NIH. Advocates had started emailing NIH on November 3rd. But Dr. Collins replies:

Got it. I will express our disappointment to the Solve ME/CFS leadership.

This email discussion between Collins and Koroshetz repeats multiple familiar talking points: ME activists should not have made a “huge fuss,” and now scientists will “shy away” from studying this disease because of “one attack after another due to the strong biases that are out there.” And therefore: “Funding could be for naught.” I know I am not the only person who is sick of this stereotype, but let’s review:

  1. It is appropriate to protest NIH’s invitation of a speaker whose views are not grounded in science, and who demeaned and denigrated both people with ME and the National Academy of Medicine.
  2. Researchers are not subject to “one attack after another.” This is a myth that has been grossly exaggerated and disproven on prior occasions.
  3. The “strong biases” that have been “counterproductive” are the outdated, disproven, and belittling views held by Dr. Shorter and other adherents to the psychosocial theory of ME/CFS.
  4. Research funding is not “for naught” unless that funding is wasted on previously disproven hypotheses.
  5. People with ME are not responsible for the lack of interest in ME research.  The blame lies with CDC for focusing on the symptom of chronic fatigue, instead of the disease of ME, and contributing to the false but dominant psychosocial narrative. The blame lies with NIH for refusing to take the steps necessary to attract and fund research for many years.

A circle with a sad face and the caption “Blame token; it’s your fault.”

I’ll speak up for the people in the back: THIS IS NOT OUR FAULT. But according to Drs. Koroshetz and Collins, it is. Thus, Dr. Collins promised to express NIH’s disappointment to SMCI.

I have a great deal of respect for Dr. Collins, but I am not sorry if I (or ME advocates) disappoint him. I am much more concerned about the disappointment that I and other people with ME must face each day that we have to live without appropriate diagnosis, care and treatment. I am more concerned about the disappointment of the ME research community that NIH will fund only two or three research centers, despite all the data that point to the need for much, much more. So if Dr. Collins or Dr. Koroshetz are disappointed by the way that people with ME are fighting for their lives, I can live with that.

But the problem is not whether Dr. Collins is disappointed in me, or anyone else. The problem is that real harm is caused by perpetuating the lie that people with ME are to blame for the sins of CDC and NIH.

Part Two: Bad Advocate, No Cookie

ME social media lit up earlier this month when Dr. Koroshetz said (on video) that ME research funding needed to be ten or twenty times its current level. That is a stunning admission from the Director of the National Institute of Neurological Diseases and Stroke, but the full context of his comments show the harm of blaming people with ME.

Dr. Koroshetz made these comments during his June 9, 2017 presentation to the Advisory Council for the NIH Director (beginning at 2:25:00 in this video). He began by describing NINDS’s efforts on ME/CFS, specifically the intramural study and the RFA for research centers. Dr. Ian Lipkin, who sits on the Advisory Council, said he was “not as excited about the investment in ME/CFS” because the center grants come down to about $800,000 per year in direct costs for research.

Dr. Koroshetz responded:

I think the goal was that this was not the solution but the seed to grow the research that could then come in through regular mechanisms or else to kind of add on centers so we can kind of move the field across. I think we could find three, three or four centers, that’s not gonna do it. We need probably twenty across the country.

A calculator reading “Not Enough” sits on a pile of money.

Understand what Dr. Koroshetz is saying here. He admits we need twenty centers, but that he’s only investing in the “seed to grow the research.” To Dr. Koroshetz and others, this seems like a reasonable strategy. The field is small and could not create twenty centers this year (although it could probably create ten). So by investing a smaller amount, NIH plants seeds that years down the line could grow into twenty centers.

The problem is that the reason the field is so small is because there has been no money in it for more than thirty years. The field is small because of the strong biases against people with ME and the researchers who work on it. NIH helped create this situation through grossly inadequate funding and past grant review panels comprised of non-ME experts. Now that it admits the need, NIH should be thinking creatively on how to solve this problem quickly. At the current pace, it will be decades before this poorly funded “seed” will produce fruit.

Dr. Lipkin then raised the issue of the small amount of funding offered by the RFA collaborative center grant:

Dr. Lipkin: But $800,000 for a center [after administrative and collaborative costs] is – it’s a challenge. . . . it’s far less than a R-01 for each of the investigators. I just – it’s a problem.

Dr. Koroshetz: No one ever comes to me and said they gave me too much money. (laughs) But I think you’re right, we’ve gotta move this field it’s gonna take a lot of money. The budget’s gonna have to be ten or twenty times what it is now.

This is a remarkable statement. I don’t think we have ever heard such a public and specific admission by NIH that their ME funding is falling so far short of what is needed. From the context of his statements, it appears Dr. Koroshetz means ten to twenty times the present RFA budget of $6 million per year. That translates to $60 to 120 million per year, at least. While still far from commensurate with disease burden, that level of funding would certainly support robust research into pathogenesis and treatments.

The salient point is not, “Hurray, Dr. Koroshetz admits we need $120 million a year.” The takeaway message for people with ME is, “Dr. Koroshetz admits NIH needs to do 20 times better, but nothing is changing.” I’m trying to think of another context where a leader would say we’re falling twenty times short and then do nothing to try to make up the gap. If a company needs to increase its sales by ten or twenty times, you can bet they do something. If a government had a budget shortfall of that magnitude, you can bet they would raise taxes at the speed of light. And remember that Dr. Koroshetz – who is Chair of the Trans-NIH ME/CFS Working Group – chose to kick in only $2 million per year for the RFAs. This low investment from the Chair was not going to be exceeded by any other Institute, thus guaranteeing the smallness of the RFA.

I’m certain that Dr. Koroshetz and Dr. Collins believe they are taking action. But they are taking action that is grossly insufficient for the public health crisis of ME. Dr. Koroshetz said the effort was to “bring new people in, start research going, and hopefully then populate out further to allow folks to submit really high-quality grants to NIH”. This takes time. And we do not have the time. We have hundreds of thousands of Americans who remain confined to their homes and beds for years without end.

In his presentation to the Advisory Council, Dr. Koroshetz also commented on the ME community. He said NIH is:

trying to work with the community which feels terribly ignored and quite angry over this over the last decades but I think we’re making definite inroads there and getting the trust re-built.

A comic book image of a man and woman. The word “lies” is repeated between them.

And here we go again: We’re angry. Just like we make a “huge fuss” and “stir up trouble,” which is “counterproductive.” We are the problem, according to this view.

I reject that view completely and wholeheartedly. People with ME are not the problem. The failure of the research and medical enterprise to take care of people with ME is the problem.

As long as people with ME are accused of being angry and counterproductive, of stirring up trouble and chasing away good scientists, then no one else needs to be accountable for the current situation. If there isn’t enough funding, it’s our fault. If there aren’t enough scientists, it’s our fault.

Casting people with ME as angry while simultaneously blaming us for the current situation does more than deflect blame from NIH. It’s a pretty effective manipulation technique. “You’re angry because there is no funding, but there’s no funding because you are angry.” Such circular reasoning is a trap. Asking quietly and nicely does not force change, and demanding change reinforces the stereotype and status quo.

For more than thirty years, NIH has given people with ME every right to be angry. And I can tell you, having read hundreds of emails sent by the public to NIH officials, we are actually restraining our anger quite well. Describing us as angry creates the impression that we are flooding NIH with vitriol. I have previously fact checked that, and the same was true during the Shorter controversy. ME activists might be vocal, but we have nothing on groups like ACT UP or the heroes of ADAPT.

The longer this frame persists, the more it is reinforced. I suspect the frame is so ingrained at NIH that most people don’t even realize they are looking at us through this lens. It is so ingrained that a few strongly worded emails are enough to make Dr. Koroshetz “pretty upset” with us. Every time that happens, it reinforces the frame still more. However honestly Dr. Koroshetz and others believe in their perception of us as angry, however confident they are that we are keeping scientists away from research, this stereotype remains a serious problem.

Why? Because as long as it is our fault, it is not their fault. Because if it is our fault, then the slow strategy makes sense. It takes time to make “inroads” with such a self-destructive community. By gradually dripping money into the bucket, and letting things progress the way they would have if we had started thirty years ago, then no one has to make waves or spend political capital to fix it.

But people with ME have been abandoned. We have been left to fend for ourselves. Damn right, we’re angry. We have to be. It helps us survive, and it has led to change.

Dr. Collins did not simply wake up one morning and decide to do a little more for ME research. NIH’s current commitment was the result of years of advocacy, and calling attention to the state of the science, and demanding an RFA. After the NAM report, and the P2P report, and the Millions Missing protests, and Brian Vastag’s public letter which was retweeted by pretty much every single science reporter in the United States — after all that, NIH decided to invest a little bit more in ME research. An investment that Dr. Koroshetz admits is minuscule compared to what is required.

At the Advisory Council meeting, Dr. Koroshetz gave all the credit to Dr. Collins, saying:

Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is an area that’s really been completely under-investigated across the country, and Francis [Collins] was really courageous and went out there and said that NIH is gonna change that.

Courageous: a word that means “not deterred by danger or pain; brave.” I don’t see how Dr. Collins pushed through pain or even spent much political capital to help us. To me, the people truly brave and undeterred by pain are the people with ME (and their families, friends and allies). I know a mother of two young adult sons with ME; she is brave. I know another mother who has not disclosed her diagnosis to most of her family; she is courageous. The executive with ME who keeps working is undeterred by pain. The woman who withdraws from her doctoral program with just her thesis to complete is brave in the face of that disappointment and loss. The researchers and clinicians who labor on shoestring budgets are not deterred by the potential danger to their careers. I am writing this blog post, undeterred by the pain I am already experiencing and the post-exertion crash that will follow. The advocates who sacrifice their health and privacy to speak on behalf of all of us are courageous.

Dr. Koroshetz said NIH was “getting the trust re-built.” But how much trust can exist if people at NIH think we are fighting for our lives too loudly? How much trust can exist given the way Koroshetz and Collins blamed SMCI for “stirring up trouble”? How much trust can exist if the response to this public health emergency is a strategy that will take years for tangible scientific progress? How much trust can exist when NIH blames us for the poor funding situation, when they are the ones who control the purse strings?

The bottom line: this perception that people with ME are unreasonably angry and wildly attacking researchers feeds the perception that “Funding could be for naught.” And if there is a perceived risk that funding could be useless, no one is going to invest that funding. This perception places the blame and burden of proof on people with ME. If we do not behave in accordance with Drs. Koroshetz and Collins’ expectations, then we will not be rewarded with funding (as if they have ever rewarded any type of our behavior with funding). Bad advocate, no cookie.

This stereotype leads to and justifies NIH’s current strategic and policy approach to ME: risk as little as possible, cautiously drip in a little more funding, and wait patiently for something to change, some day, far down the road.

Are you ok with that?

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