Drinking From A Fire Hose

Posted on March 19, 2019 by Jennie Spotila

News is coming at the ME community at a crazy pace right now. Each time I go online, there is another controversial article that requires a response. First there was the NPR chronic pain piece and ensuing debacle. Then came the infamous Reuters article, and this week we’ve seen media coverage in the UK that is shockingly bad. On the happier side of the spectrum, we have the Emerge Australia Conference and the upcoming NIH meeting on accelerating ME/CFS research.

And it’s only Tuesday.

After the NPR story, I started mentally drafting an article about misogyny, ableism, and NPR’s shocking ignorance of the landscape into which they dropped that stink bomb. The Reuters article deserves to be demolished with a factual wrecking ball. I haven’t had the capacity to give the UK stories and critical responses more than a glance.

Meanwhile, I’ve been working on my analysis of NIH’s grant review panels and application approvals. As I collate the data from multiple FOIA requests, I am finding inconsistencies. NIH gave me data that differs from the data they gave another advocate. There are even inconsistencies among the responses NIH has given me. For example, in one response NIH told me no meeting was held on a particular date. But in another response, NIH told me how many grant applications were reviewed at a meeting corresponding with that date. Catching these errors takes a lot of time, and careful cross-checking instead of accepting NIH responses at face value. And when I find errors like this, I have to file additional FOIA requests to get clarification.

Amidst all of this, I am writing a book.

It’s all too much. I do not have the capacity to write thousands of words a day, or push forward multiple projects. My ME brain cannot multi-task or focus on more than one thing. Small interruptions, like a short phone call or text from a friend, derail my concentration and short circuit what I’m trying to do.

I am constantly asking myself, “What’s the most important thing I need to do?” Trade-offs are familiar to everyone with ME. Take a shower or answer an email? Pay a bill or cook some food? Read to your kid or do some stretches? Read a news article or research a treatment? You can only pick one thing at a time, and hope there will be capacity left for something after that.

Self-care is a necessity, not a luxury, for people with ME. The more I pay attention to my choices, the more I realize that I suck at self-care. Since I first got sick, I have consistently chosen to sacrifice what my body needs in favor of what my family needs, what advocacy needs. It’s a vicious cycle that leaves me wondering if these choices have made me sicker. How well might I be if I had put my own body first?

I am trying to do better. Now I ask myself, “If I can only write one thing, what is the highest priority?” I have chosen to write words for the book, rather than write words about all the controversies this week. I will watch the NIH meeting from home to save the energy of attending in person. I am asking the people I love for help and understanding.

We all have limits, regardless of health or circumstances. Everyone, at some point, has to choose to do one thing and sacrifice another. No one can have it all. People with ME, and other chronic diseases, have to make choices about activities others take for granted, but the principle is the same: what is next most important thing I need to do, and what other thing do I have to give up?

We need to rely on each other. I am learning to trust that even if I cannot participate in an advocacy issue, there are others who can. I am changing my focus from “What needs to be done?” to “What can I do?” It might sound like a distinction without a difference, but for me it is a tectonic shift.

So if you are struggling or overwhelmed, I see you. If you need to take a break from something, I support you. Do what you must to turn down the fire hose and drink from a water fountain instead. I’ll be standing right next to you.

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Who Reviews ME/CFS Applications for NIH?

Posted on February 5, 2019 by Jennie Spotila
Note: After publishing this post, I discovered that I had inadvertently missed one meeting in 2017. This post was updated on February 12, 2019 to reflect all new calculations. The changes are not significant enough to alter any conclusions.

There is no question that NIH’s funding of ME/CFS research has been minuscule relative to the size of the public health crisis. Review of ME/CFS grant applications at NIH has drawn scrutiny from the public as one contributing factor. The public perception is that the grant review panelists have not been ME/CFS experts, and that this has led to the unfair denial of qualified applications.

That first point—that grant reviewers are not ME/CFS experts—has a factual answer. The second allegation—that the lack of experts has negatively impacted funding decisions—is harder to answer with publicly available information. Nevertheless, in 2013 I embarked on a project to gather the evidence and answer these questions.

This article will focus on the first issue: who is reviewing the applications. My analysis of the data points to two main conclusions:

  1. A small subset of reviewers (experts and non-experts) wield disproportionate influence because they serve so many times.
  2. NIH changed its approach to ME/CFS application reviews in November 2010. Since that date, NIH has primarily appointed ME/CFS experts to evaluate the applications.

Let’s begin by reviewing the basics of NIH’s grant review process.

How NIH Reviews Grant Applications

When a grant application is submitted to NIH, a multi-level review process begins. In the first stage, a review panel of non-federal scientists with relevant expertise evaluates and scores the application on a variety of criteria.

The Center for Scientific Review (CSR) at NIH is responsible for selecting reviewers for the panels. CSR manages hundreds of these panels, which fall into two general categories: standing study sections and special emphasis panels. Special emphasis panels (or SEPs) are comprised of temporary members, selected specifically for the applications under review at a single meeting. Most SEPs are used once and then dissolved, but there are a dozen or so recurring SEPs for areas with an ongoing need for review. ME/CFS is one of those topic areas, and its recurring SEP has a new roster for each meeting.

Each study section and SEP is managed by a Scientific Review Officer (SRO). This is not a desk jockey job; the SRO has a substantive impact on the peer review process. The SRO is responsible for selecting scientists for the panel, monitoring potential conflicts of interest, and preparing summaries of the peer review scores and critiques.

Review panel members must have substantial relevant scientific expertise and knowledge of the most current science. SROs look for reviewers who have themselves received major peer-reviewed grants, and who understand the peer review process. The quality of grant application reviews is largely dependent on selecting the right scientists to review them.

The Methods of This Project

The obvious first step for my analysis was to gather all the SEP rosters and look at who served. Study sections and SEPs are federal advisory committees, and as such their membership must be made public. You might think that getting the rosters would be easy. You would be wrong.

In 2013, I looked for the rosters online, and found very few. When I asked NIH about it, I was told that the rosters were not posted publicly “due to threats some previous panel reviewers have received.” (this is an interesting story for another time) I was instructed to file a FOIA request for the rosters. NIH then denied that request, and to make a long story short, it took me two years of appeals to finally obtain the rosters. For several more years, NIH absurdly required me to file a FOIA request for each roster. It took intervention by Dr. Joe Breen in 2016 to finally change CSR’s policy on publishing the ME/CFS SEP roster.

Since one of my main objectives was to identify how many ME/CFS experts participated, I had to define who qualified as an expert. I did not assume that I knew all the experts and could simply rely on name recognition. For purposes of this analysis, I set the expertise bar very low. I defined an ME/CFS expert as anyone who—at the time they served on the SEP—had at least one publication on ME/CFS or had an NIH grant for ME/CFS research.

I compiled all the roster names for the SEP meetings from 2000 through 2018. I searched PubMed for each person’s ME/CFS publications at the time he or she served on a SEP. I also did my best to identify the scientific specialization of all the members by reviewing their institutional profile pages and CVs. Then I looked for the trends and patterns.

Representation As A Whole

Between January 2000 and December 2018, the ME/CFS SEP met 62 times.* A total of 327 people served as reviewers. Of those 327 panelists, 58 (or 17.7%) qualified as ME/CFS experts under my liberal definition.

Half of all reviewers served more than once, and each roster varied between 5 and 36 members. To calculate the average number of times individuals served, I counted the combined roster seats across all the meetings: 836 seats. Of the total 327 panelists, each person served an average of 2.6 meetings. However, the 58 ME/CFS experts served a combined 207 seats, or 24.7% of the total seats. Those 58 experts served an average of 3.6 meetings each.

First finding: Between 2000 and 2018, 17.7% of the reviewers were ME/CFS experts, and they served 24.7% of the total roster seats.

The percentage of ME/CFS experts at each meeting varied between 0 and 100%. Eight meetings included no ME/CFS experts whatsoever, while four meetings were 100% experts. Over the entire time period, ME/CFS experts made up 20% or less of the rosters of 32 meetings.

Second finding: Just over half of the meetings included 20% or less ME/CFS experts, and eight of those meetings included no experts at all.

Of the 327 total individuals who served on the SEP, I identified 65 (20%) that have psychology or psychiatry degrees. Note that this includes researchers who are ME/CFS experts, such as Drs. Jarred Younger and Lenny Jason. Twenty-four people (7.3%) specialize in craniofacial diseases such as Temporomandibular Disorders. Fourteen (4.2%) are sleep researchers. There are six people who appear in more than one of these categories (such as a psychologist specializing in insomnia).

To measure the influence of these specialties, I looked at how many times these individuals served on the SEP. The 65 psychologists served a total of 214 times, or 25.6% of the total seats. Adding in the sleep and craniofacial specialists (and taking the overlaps into account), these three categories combined represent 29% of the total individuals, but 36.7% of the meeting seats.

Third finding: One-third of all reviewers specialize in psychology/psychiatry, sleep, and/or craniofacial areas, and occupied 36.7% of the meeting seats between 2000 and 2018.

As mentioned above, each reviewer served an average of 2.6 times. However, this is a bit misleading because 71% (233 people) served only once or twice, and the remaining 29% served three or more times. The reviewers who only served once or twice occupied just 36% of the review seats. That means 29% of the reviewers (experts and non-experts) occupied 64% of the seats. To be clear, this means just 94 people filled 534 seats between 2000 and 2018 because they served so many times.

Fourth finding: A minority of reviewers (29%) had a disproportional influence on the review process because they served so many times (64% of seats overall).

The ME/CFS Experts

As I stated in the Methods description above, I used a very liberal definition of ME/CFS “expert.” I classified an individual as an expert if he or she had at least one ME/CFS publication or at least one NIH grant for ME/CFS research at the time of service on the SEP. It turned out that there are a few reviewers who served on the SEP prior to having a publication or grant in ME/CFS, and then served again afterward. I adjusted my analysis to take this into account. You can read the entire list of ME/CFS expert reviewers here.

A total of 58 out of 327 reviewers (17.7%) met the expert definition for at least one meeting served. Many of the names will be immediately recognizable as experts, but others may be a surprise. For example, Dr. Ila Singh published on XMRV and then left the ME/CFS field. Dr. Jordan Dimitrakoff co-authored a paper with his colleagues from the CFS Advisory Committee, but he is a pelvic pain specialist and has done no ME/CFS research. Yet under my liberal definition, both are counted as ME/CFS experts. I was also surprised to find five people who were CDC employees when they served on the SEP: Dr. Jim Jones, Dr. Elizabeth Unger, Dr. Alison Mawle, Dr. Mangalathu Rajeevan, and Dr. Alicia Smith. I do not know if it is unusual for CDC employees to serve on NIH grant review panels.

Fifth finding: Using the most liberal definition of ME/CFS expert, only 17.7% of the reviewers qualified. Multiple people on the list were never involved in much ME/CFS research and/or left the field. Five individuals were CDC employees at the time they served on the SEP.

ME/CFS experts served an average of 3.6 meetings each, but this is misleading because 40% of the group served only once. When I removed the one-timers from the calculation, the remaining 35 reviewers served 184 times, which is 89% of the total number of expert seats. Concentrating grant review assignments to such a small number of scientists is risky. One person’s bias, expectations, preferences, and professional experience can shape the direction of NIH funded research, for better or worse. This is especially true for the reviewers who serve most frequently. At the very top of that list are:

These four reviewers served a combined 49 times, which is 23.6% of the total expert seats. The heavy influence of Dr. Friedberg is an example of the inherent risk of this approach. While he has worked in this field for more than fifteen years, and has received $3.9 million in NIH grants, he is a psychologist. Proposals that rely on computational biology, cutting edge imaging, or immunology could be challenging for a behavioral psychologist to properly evaluate. There are other ME/CFS experts, including other psychologists like Dr. Jarred Younger, who may be better positioned to review these applications.

Sixth finding: Just 35 ME/CFS experts have served a combined 184 times (89% of expert seats). Just four experts (Friedberg, Baraniuk, Biaggioni, Hanson) have occupied 23.6% of those seats. They have likely wielded great influence on application scores and critiques.

Before and After November 2010

So far, I have presented my findings based on all the rosters from January 2000 to December 2018 combined. That is not the whole story, however. NIH changed its approach to reviewing ME/CFS grant applications in November 2010.

Prior to November 2010, the SEP reviewed grant applications related to Chronic Fatigue Syndrome, Fibromyalgia, and sometimes Temporomandibular Disorders (TMD). The rosters had titles like “CFS/FM SEP” and “CFS/FMS/TMD.” Beginning with the SEP meeting on November 2, 2010, NIH narrowed the focus of the panel to CFS only. The meeting titles changed to “Chronic Fatigue Syndrome” and “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.”

The name of the SEP was not the only difference. The types of reviewers appointed to the panels changed significantly. Pain researchers and dentists were out, and ME/CFS experts were in.

Before Nov 2010 After Nov 2010
Number of Meetings 36 26
Number of Seats 605 231
Meetings with No Experts 8 (22%) 0
Meetings with 1-20% Experts 23 (64%) 1 (4%)
Meetings with 21-50% Experts 5 (14%) 7 (27%)
Meetings with 51-99% Experts 0 14 (54%)
Meetings with 100% Experts 0 4 (15%)
Non-expert seats 538 of 605 (89%) 91 of 231 (39%)
Expert seats 67 of 605 (11%) 140 of 231 (61%)
Psych/sleep/craniofacial 275 of 605 (45.5%) 34 of 231 (14.7%)

As you can see, beginning with the November 2010 meeting the SEP rosters are almost directly opposite to the earlier rosters. The expert representation went from 11% to 61%, while non-expert representation dropped from 89% to 39%. I do not know why the shift was made at that particular time, but there is no doubt that it was. It seems unlikely that this was the sole decision of the SRO at the time, but I have no documentary evidence that points to how the decision was made.

Seventh finding: Beginning in November 2010, the focus and composition of the SEP shifted dramatically and included substantially more ME/CFS experts than any meetings prior to that date.

As good as things look after November 2010, there is one troubling trend. Eight of the 25 meetings had 50% or less ME/CFS experts. Seven of those meetings were held since April 2017, including the panel that reviewed the RFA proposals in July 2017.

The roster for the RFA review went through multiple iterations. The final version included 37% ME/CFS experts. This roster must have been difficult to put together because there were so many experts participating in one or more of the fifteen proposals reviewed at that meeting. The conflict of interest policy would have excluded many of them from service on the panel.

The panels for the meetings since July 2017 may signal a dangerous shift in approach. All four had less than 50% ME/CFS experts, with the April 2018 meeting including only one expert and seven non-ME/CFS experts. All four rosters were overseen by Dr. Jana Drgonova. What her approach will be going forward remains to be seen.

Eighth finding: The SEP that reviewed the RFA proposals included only 37% ME/CFS experts, possibly due to the conflict of interest policy excluding many reviewers. The use of experts on the normal SEP panels declined to less than 50% after July 2017, for reasons unknown.

Summary

Rather than repeat the legend that ME/CFS grant applications are reviewed by dentists and psychologists, I set out to examine the data on who reviews these applications. My analysis points to two main conclusions.

First, there is an inside/outside club of reviewers. For ME/CFS experts and non-experts alike, a small subset wields great influence through service at multiple meetings. Among ME/CFS experts, 60% of the experts occupied 89% of the expert seats. The top four individuals occupied 23.6% of the seats. Among non-ME/CFS experts, 48% of the reviewers occupied 78% of the non-expert seats. Given how these subsets wield out-sized influence through repeated appearances, one hopes that this is favoring high-quality reviews and not unreasonably negative ones.

Second, these data show that NIH adjusted its approach in November 2010. The reliance on ME/CFS experts jumped overnight, and the SEP was refocused on ME/CFS applications alone. However, the negative trend to use fewer experts in 2018  bears careful watching.

The real question is how these rosters impacted grant funding decisions. My next article will present that analysis.

Recap of Findings:

  1. Between 2000 and 2018, 17.7% of the reviewers were ME/CFS experts, and they served 24.7% of the total roster seats.
  2. Just over half of the meetings included 20% or less ME/CFS experts, and eight of those meetings included no experts at all.
  3. One-third of all reviewers specialize in psychology/psychiatry, sleep, and/or craniofacial areas, and occupied 36.7% of the meeting seats between 2000 and 2018.
  4. A minority of reviewers (29%) had a disproportional influence on the review process because they served so many times (64% of seats overall).
  5. Using the most liberal definition of ME/CFS expert, only 17.7% of the reviewers qualified. Multiple people on the list were never involved in much ME/CFS research and/or left the field. Five individuals were CDC employees at the time they served on the SEP.
  6. Just 35 ME/CFS experts have served a combined 184 times (89% of expert seats). Just four experts (Friedberg, Baraniuk, Biaggioni, Hanson) have occupied 23.6% of those seats. They have likely wielded great influence on application scores and critiques.
  7. Beginning in November 2010, the focus and composition of the SEP shifted dramatically and included substantially more ME/CFS experts than any meetings prior to that date.
  8. The SEP that reviewed the RFA proposals included only 37% ME/CFS experts, possibly due to the conflict of interest policy excluding many reviewers. The use of experts on the normal SEP panels declined to less than 50% after July 2017, for reasons unknown.

 

*There was a meeting scheduled for February 22, 2011 but it was canceled. A meeting was eventually held on March 24, 2011 with a different roster. I have excluded the February meeting from this analysis.

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NIH Obstacles Thwart ME Research

Posted on January 10, 2019 by Jennie Spotila

After I published my post on the NIH Obstacle Course (November 2018), readers’ reactions made clear that a shorter version of the article could be useful.

Today, STAT published that shorter article in the First Opinion section. You can read it here: The NIH is thwarting research on a poorly understood but serious condition.

Please read and share widely! Given the ongoing work of the Working Group advising the Council of the National Institute of Neurological Diseases and Stroke, I think the article in highly relevant in our field.

My thanks to STAT for giving this article a home, and to Julie Rehmeyer for pointing me in the right direction.

Posted in Commentary | Tagged , , , , , , , , , , , , , , , , , , | 5 Comments

NIH’s Obstacle Course to Success for ME/CFS Researchers

Posted on November 29, 2018 by Jennie Spotila

A shorter version of this article was published on STATNews on January 10, 2019.

One message dominates NIH’s talk about ME/CFS research: submit more high quality grant applications. Funding would increase if there were more high quality grant applications. Give us a chance to prove we’re serious, but send more high quality grant applications. Thank you for your petition with 50,000 signatures, but send more high quality grant applications.

In a field desperate for research funding, one might think that ME/CFS researchers would be flooding NIH with grant applications. Yet that does not seem to be happening. One significant reason why is that NIH’s business-as-usual approach actually increases the barriers to success for ME/CFS grant applications.

A researcher who wants NIH funding for ME/CFS research has to navigate an obstacle course that begins long before the grant application gets in front of reviewers, an obstacle course which arises from NIH’s own broken response to ME. There are at least six questions a researcher must consider in deciding whether to apply for funding:

  1. Does NIH want my grant? A researcher may decide the answer is no, especially if she wants to generate hypotheses or has been discouraged by NIH’s lack of interest.
  2. Is there NIH funding for my grant? Given that NIH currently has no Funding Opportunity Announcements targeted at ME/CFS, researchers could very well conclude the answer is no.
  3. Can I write this grant? On top of the time pressure and institutional challenges that all researchers face, ME/CFS researchers may face additional barriers such as lack of support from institutions, lack of mentors, and the general stigma associated with this disease.
  4. Who will review my grant? Based on the SEP rosters for the last eighteen years, researchers should expect that some reviewers will be ME/CFS experts but they may not make up the majority.
  5. Will the SEP members review my grant fairly? Given the unique challenges of the field that are not recognized by non-experts, applicants may conclude the answer is no.
  6. Who is my competition? There is no set answer to this question. Depending on timing, the competition could be fellow ME/CFS researchers or a much larger and harder to define pool.

Let’s follow a hypothetical researcher as she runs this gauntlet to submit her ME/CFS proposal to NIH.

Does NIH want my grant?

Before the first word is typed on a grant application page, a researcher asks herself whether NIH will be interested in her project. There are multiple reasons why she may conclude that the answer is no.

First, NIH does not fund hypothesis-generating research. A proposal that boils down to “I’m going to look and see what I can see” is not going to succeed. Yet ME/CFS research needs these projects at this stage. This field has not just been ignored; it has been suppressed by decades of stigma and the false narrative that it is caused by deconditioning and depression. Ironically, NIH has tacitly admitted that hypothesis-generating research is needed. The Clinical Care Center study run by Dr. Avindra Nath is designed to collect reams of data that will then generate hypotheses for further research.

Second, a researcher may be deterred by NIH’s demonstrable lack of interest as evidenced by low ME/CFS funding. NIH currently has no Funding Opportunity Announcements targeted at ME/CFS (see below). In addition, NIH funding has been appalling over time–including the 17% decrease in funding last year–so a researcher may conclude that NIH simply isn’t interested in ME/CFS projects.

Third, if the researcher wants to conduct a clinical trial of a drug treatment, she will have trouble at NIH. Dr. Nancy Klimas has tried, but she said, “There is no door to walk through at the NIH” for clinical trial funding in ME/CFS. Klimas attributed this to the fact that the ME/CFS Special Emphasis Panel (see below) does not review clinical trial applications.

Finally, a researcher may be individually discouraged from applying. I have heard multiple stories along these lines, although people are understandably reluctant to go on the record. Dr. Ron Davis went public with the rejection of two of his pre-proposals in 2015. One of the reasons given by the National Institute of Neurological Diseases and Stroke was that, “It was not clear if the proposal falls within the mission of NINDS.”

Is there NIH funding for my grant?

A researcher might decide NIH is interested in her project, but she also has to ask if there is funding available for it. To answer that question, she will look at two general types of Funding Opportunity Announcements.

First, she will look for a Program Announcements, or PA. The PAs are like open house invitations. NIH says, We’re interested in seeing grant proposals in such-and-such area of research. The invitation is really important, because it tells a researcher where the open house is and what time it is happening. There is no guarantee that there will be enough food and booze to go around, but the researcher knows that if she shows up at the specific place and time then she can try to fight her way to the buffet. However, NIH’s last open house invitation for ME/CFS research was issued in 2012 and it expired in 2015. There is nothing whatsoever targeted for ME/CFS at this time.

Incidentally, on the last NIH telebriefing, Dr. Vicky Whittemore said that NIH would no longer be issuing Program Announcements. However, when I followed up with her after the call she said that her comments were premature. Apparently NIH is contemplating moving away from PAs but no announcement has been made yet.

The second type of Funding Opportunity Announcement is the Request for Applications, or RFA. Unlike a general invitation, an RFA is a specific type of funding competition. NIH says, We have X dollars set aside and we want to spend that on this specific type of research. This is more like a competitive swim meet than an open house. You have to qualify for the swim meet in order to compete, but someone is definitely going home with a gold medal. If an ME/CFS researcher is doing the kind of research the RFA wants, then she knows her application has a shot at the set aside funding.

This is why ME/CFS advocates and researchers are constantly asking for RFAs instead of PAs: someone is going to get money out of an RFA competition. This is also why NIH is very reluctant to issue RFAs: it requires NIH to decide in advance how much money it will invest and then set that money aside for the competition.

Just to be clear, NIH issues plenty of RFAs across its full research portfolio, including forty-three RFAs in October 2018 alone. NIH can do this. But NIH has been clear that it has no intention of issuing an RFA in ME/CFS research any time soon.

It’s easy to understand why a researcher might give up on applying to NIH, given the picture I’ve painted thus far. However, let’s assume that our hypothetical researcher has concluded that NIH wants her grant. And despite the fact that there is no funding opportunity targeted at ME/CFS, our researcher has concluded that there is a chance that NIH might fund her grant. Next she has to ask:

Can I write this grant?

Generally speaking, scientific researchers at academic institutions are responsible for obtaining their own funding. Universities do not fund much research themselves. Researchers know they have to write successful grant applications to get funding, and it is essential to their careers to do so.

Yet it is not that simple. An NIH grant application can take several months to write, and that is after months of planning time. The typical NIH application might be 30 pages long, but the applications for the Collaborative Research Center RFA were hundreds of pages long. The more complex the project and the more collaborators involved, the more difficult and time consuming it is to write the application. Submitting successful applications is part of the job description, but so is conducting current research, teaching a full course load, supervising graduate students, and successfully publishing study results. Oh, and there are committee meetings and other administrative duties. The average professor works sixty hours per week.

And our hypothetical researcher does not just need time. She needs support from her institution in the form of equipment, space, and staff. She needs her department head to support her ideas (or at least not actively squash them), and her application must include letters from her institution and collaborators to prove she has that support.

Obviously, this can go wrong in multiple ways, and many of these issues are not limited to ME/CFS research. However, the decades of stigma and misinformation have a unique impact in ME/CFS. Support from institutions and colleagues is harder to come by. Mentors are few and far between. All of the well-known challenges of writing successful grant proposals are multiplied in this field, increasing the difficulty of our hypothetical researcher’s obstacle course. NIH has done nothing to alleviate the challenges that have arisen from its own history with ME/CFS.

Who will review my grant?

NIH’s peer review system is at the core of its funding decisions. The Center for Scientific Review appoints reviewers with relevant expertise to Study Sections and Special Emphasis Panels. The reviewers score applications on a variety of criteria, and come up with an overall impact score. This peer review is not the final decision on an application, but it is critically important. A bad score in peer review is fatal for the application.

Given the importance of the peer review scores, it’s obvious that reviewers must have the appropriate knowledge and expertise. Yet this has not always been the case when it comes to ME/CFS research.

I have been tracking the rosters of the various incarnations of the CFS Special Emphasis Panel, or SEP since 2000, and I’ve seen definite trends. In earlier years, the SEP covered the areas of CFS, Fibromyalgia, and Temperomandibular Joint Dysfunction. As a result, the SEP reviewers were predominantly dentists, psychologists, and pain experts. Between 2000 and 2010, the average representation of CFS experts on the SEP was 15%.

In November 2010, the SEP was assigned a more narrow scope of just CFS (changed to ME/CFS in 2012). The new scope had an immediate effect on the representation of experts on the rosters. Between November 2010 and the end of 2017, ME/CFS experts made up 72% of the rosters on average.

There is one exception, and that is the roster of the SEP that evaluated the applications for the Collaborative Research Centers and Data Management Center in 2017. ME/CFS experts made up only 26% of that roster. There are several possible reasons for this. First, NIH’s conflict of interest policy meant that anyone applying for RFA funding would have been excluded from the roster, along with many of their colleagues. (Read more about the COI policy here ). Second, the nature of the applications required peer review by experts in population studies, computational biology, and other areas outside of ME/CFS research.

Then, the SEP rosters took a puzzling turn in 2018. ME/CFS experts made up 25-44% of the rosters at the three review meetings. I have no explanation as to why the rosters have shifted to include fewer ME/CFS experts. Since the SEP panel is reconstituted for every review cycle, there is also no way to predict representation on future meeting rosters.

Will the SEP members review my grant fairly?

Our hypothetical researcher should be prepared for her application to be reviewed by a variable mix of ME/CFS experts and non-experts, and so she has to wonder if she will get a fair and accurate review score. I am not assuming that non-experts will automatically trash ME/CFS grant applications, but I also do not assume that all SEP members will use the right standards.

First, it is possible that ME/CFS experts on the SEP are not able to assess all aspects of all ME/CFS grant applications. For example, a POTS researcher on the panel may not be familiar with design of genome-wide association studies or computational biology. A psychologist may not be able to critique a study with newer technology like QEEG. Expertise in ME/CFS does not automatically convey expertise in every possible study of the disease.

Second, reviewers bring their own biases with them. Sleep researchers have a different understanding of fatigue than ME/CFS experts. Reviewers may be unfamiliar with post-exertional malaise, including how it differs from fatigue and how to assess it. The worst case scenario is a reviewer who believes the lie that ME/CFS is depression and deconditioning. Dr. Ian Lipkin said that this is exactly what happened with one of his applications in 2014:

I have been in competition now twice to get funded, and the people there who reviewed me gave me abysmal scores.  And the critiques of my work were unfair, and one of the people who critiqued my work said, in fact, that this is a psychosomatic illness.  I was floored.  I protested, and for reasons that are obscure to me this same individual wound up back on the study section, and I got a similar unfundable score.

Third, ME/CFS research has unique challenges that are well-known inside the field, but potentially not understood by scientists outside the field. Case definition is an obvious example of this. The field has used multiple case definitions over the years, some of which have fatal flaws. NIH has refused to select a single gold standard case definition, arguing that researchers should justify their chosen definition in the applications. But how is a non-expert supposed to evaluate that choice and justification? Someone outside the field is probably unfamiliar with the differences between the Oxford, Fukuda, Reeves, Canadian Consensus, and National Academy of Medicine criteria. Outside reviewers will have difficulty assessing the impact of chosen criteria on a study, and they are unlikely to appreciate the challenges of recruiting appropriately diagnosed subjects.

Fourth, peer reviewers will bring expectations from their own fields of study. A cancer or heart disease researcher is used to multi-center studies, with sample sizes in the thousands. That kind of study has been and remains impossible in ME/CFS. Reviewers may have unrealistic expectations about data quality and study design. Non-ME/CFS experts will also be unable to assess whether an area of study is a strategic priority in the field.

The peer review process is a cornerstone of funding decisions at NIH, but it is far from the only factor in play. Our hypothetical researcher faces additional barriers, including her competition.

Who is my competition?

Competition for NIH funding is fierce, not matter what the area of study. NIH’s overall application success rate was 18.7% in 2017. However, an ME/CFS grant application has to compete in ways that put our hypothetical researcher at a disadvantage.

First, an ME/CFS grant application is naturally competing against all the other applications reviewed at a specific SEP meeting. This can actually happen more than once. NIH allows researchers to revise and resubmit applications based on reviewer comments. On the second submission, an ME/CFS application will compete against an entirely new group of applications in front of a different group of reviewers. That means that an application for a proteomic study could have been scored in comparison to other -omics studies in one round, but then compared to POTS or infection studies in the next round. Given that each review meeting has a new roster, new reviewers may have different criticisms of the application than the first group. So our hypothetical researcher could revise her application based on comments from Group 1, and then get entirely new and different criticisms from Group 2.

Second, the competition pool is heavily influenced by the Funding Opportunity Announcement. Recall the open house vs. swim meet analogies I discussed earlier. Those are very different sets of competitors. With a Program Announcement, our hypothetical researcher is competing against everyone else headed for the buffet at the open house. With an RFA, our researcher is competing against just the swimmers in the pool—and someone is guaranteed to win. This will influence the peer review scores. Reviewers for an RFA know that a good score will basically guarantee funding, and select from among the applications in front of them. Normal Program Announcement review is a more diffuse competition, in part because no one is guaranteed funding and the full group of applicants might not be reviewed by the same group of reviewers.

Third, applications that score well at the SEP stage are then sent to the relevant Institute’s Council for consideration. At this level, the application is now competing against all the other applications reviewed at the Council meeting, regardless of the field. For example, an ME/CFS infection study will compete against every other grant coming before the Council of the National Institute of Allergy and Infectious Diseases. The infection study might be fabulous compared to other ME/CFS applications, but not as strong compared to hepatitis and influenza studies that have huge sample sizes, etc. In addition, ME/CFS is not a named priority at any Institute. The ME/CFS immune study might be critical in our field, but the Council (which has no ME/CFS experts on it) might see it as a much lower priority given the Institute goals.

As I pointed out before, ME/CFS has neither an active RFA nor PA. New applications are currently being submitted under very general parent announcements like this one. It invites applications (to any of twenty-three participating Institutes) for defined projects “in scientific areas that represent the investigators’ specific interests and competencies”. This is an incredibly broad net, and the competition is basically all grants being considered in a funding cycle by a particular Institute. There is no target our hypothetical researcher can aim for, other than get the best score she can and cross her fingers.

Should I stay or should I go?

NIH’s proposed fix for the dismal state of ME/CFS research funding is simply “submit more high quality grant applications.” In order to do that, our hypothetical researcher has to climb over a series of barriers created and maintained by NIH’s actions in ME/CFS research.

Should our hypothetical researcher submit another ME/CFS grant application? NIH sees no reason why she shouldn’t. As a person with ME, I desperately want her to submit one. But will she decide to invest the time and effort, roll the dice, and apply? How many times will she try? Can anyone blame her if she decides to move to another field?

NIH is responsible for erecting and maintaining this obstacle course. Yet they wash their hands of the problem and repeat the refrain, “Send more high quality grant applications.” NIH’s normal approach to encouraging more proposals will not work in ME/CFS.

There is no single silver bullet that can fix NIH’s broken response to ME. However, there are many actions NIH could take to lower the barriers and truly encourage more applications. Difficult problems require complicated solutions. It is time for NIH to tackle this problem with more than just words.

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , | 9 Comments

The Best Holiday Ever

Posted on November 23, 2018 by Jennie Spotila

Getting a puppy was not in the plan. My husband and I already had a dog (Fargo) and a cat (Lucas). The plan was for my parents to pick out a dog, and I just went along to help since they were seeing the same breeder from whom we had purchased Fargo.

Is there anything better than a litter of puppies? Goofy little furballs gamboling about, until they fall asleep right where they are? My parents fell in love with Sasha, and made arrangements with the breeder.

But there was a little guy, off by himself. He was smaller than his littermates, and didn’t engage in play exactly the same way. He was perfectly healthy and normal, but just a little . . . different. I heard myself saying, “If no one has spoken for this one, I would be interested.”

My husband had been asking for a second dog for months, and I always said it was more than I could handle. He was at work all day, and traveled for work sometimes. I could not walk Fargo, and he was still a high energy Labrador Retriever. Now I had fallen in love with another Lab. I rationalized it by saying it was a surprise for my husband.

A few weeks later, when my husband came home from work, I met him at the door with the puppy in my arms. Thinking it was my parents’ dog, he started to ask why she was at our house. I held the puppy out to him and said, “This is your new puppy.” Fourteen years later, I can still get out of trouble by reminding him, “I got you a puppy.”

Grif was our special boy. When my husband would bring him upstairs at night, I would exclaim, “Puppy!” from bed and Grif would galumph right over. And when we lost Fargo, and then Lucas, Grif poured on extra love. If I cried, Grif would bring me his toys.

I don’t think Grif ever met a person he didn’t love, and he always assumed they would love him back. He liked to offer his toys to visitors, usually while snorting and wiggling. He wagged his tail with his entire body. Grif didn’t give kisses the way Fargo did, but he loved to snuffle and snort, preferably in your armpit or ear.

Grif was more of a chaser than retriever. He waited for us to kick or throw a ball, and then he would race to it and chew on it, occasionally looking up to wonder why we hadn’t followed to repeat the game. And he wasn’t necessarily the brightest dog. When I sent him into the backyard to chase deer away from the fence, he always ran to the same corner of the yard regardless of where the deer were actually standing. While Fargo knew his toys and the rooms of the house by name, Grif was more focused on where “Daddy” was, and his favorite phrase was: “Daddy’s home.”

Labs are notoriously food focused, and Grif was no exception. His eyes bugged out with joy when he was given a little vanilla ice cream. We are just the kind of crazy dog people who will order a cup of foam from a coffee shop and give it to the dog. He loved french fries and, inexplicably, green beans. One night, on a whim, I sprinkled a little parmesan cheese on his nose, and it was like doggy Christmas had come.

When I was stuck in bed, Grif was my buddy. If I was asleep, he curled up behind my knees. If I was sitting up in bed, he wedged himself in my lap and served as a computer desk. But when my husband was home, Grif curled up on that side of the bed and slept on my husband’s pillow. There is no love like doggo love.

Which brings me to the best holiday ever. You might think I am referring to Thanksgiving, which was yesterday here in the US, and we did have a lovely time with our family. But I am talking about Wolfenoot.

Have you heard of Wolfenoot? Here is the amazing origin story:

The love and light of this child’s imagination went viral. Thousands of people have gotten on board, and Jax Goss turned the attention into a way to raise money for Wolf Park. There will even be a story book, illustrated by a thirteen year old artist, which will tell the story of The Great Wolf.

People all over the world are celebrating wolves (and canines) today, simply because a seven year old imagined that we should. For that reason alone, this is a happy thing to do. I was all in as soon as I heard about it, because we need more imagination and creativity and love and light in this dark world.

And because earlier this year, Grif died.

Shortly before my husband had his stroke in 2015, Grif tore one of his ACLs. We thought we could avoid surgery, until he tore the other one about six months later. After two separate surgeries, and severe activity restrictions during recovery, Grif and my husband did rehab together. My husband was in vision and vestibular therapy, and he and Grif would take slow walks down the street, doing their exercises together.

We had gone from a family of one disabled homebound person plus healthy human and dog, to two disabled homebound people and a disabled dog. The three of us spent a lot of time together. Grif was most content when we were watching tv, giving him lots of pats and scruffles. He couldn’t run or play or climb stairs, but he was still our Grif.

By this past summer, three years of pain and limitations had taken their toll. Grif was having more trouble walking, and then standing on his own. My husband knew the end was coming, but continued to insist it was weeks or months away because he could not imagine life without Grif. After a few days in which we had to pull Grif up to a standing position multiple times a day, I told my husband that we could not ask anything more of Grif. He had taken care of us for so long, and it was time to let him go.

For the first time in twenty years, we have no pets in the house. We will get another dog, but we have to figure out the timing and logistics. It’s very different to contemplate training a puppy when we are both disabled. For now, the house feels empty. There is less dog hair about, true, but it doesn’t really feel like home. Not the way it did before.

Wolfenoot was invented when we needed it most. Today, I will slow-roast some lamb. We will pretend the leftover pie we brought home from Thanksgiving is in the shape of the moon. And we will remember our beloved and sorely missed Grif. If he was watching over us now, he would not want us to be sad. He would bring us his toys, and snort and wiggle to make us laugh. Grif was the best doggo. Howly Wolfenoot, everyone.

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Educating Doctors

Posted on November 11, 2018 by Jennie Spotila

The Philadelphia Inquirer recently published an article I wrote about educating doctors about ME. The article can be read here. This week, the Philadelphia County Medical Society is hosting a screening of the film Unrest, followed by a panel discussion about ME. The event is open to the public, and medical professionals can obtain CME credit for attending. More info and the registration link are found here.

If you are new to the topic of ME, here are a few links for more information:

If you have questions or need more resources, pop it in the comments and we’ll crowdsource the answer as best we can.

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , | 5 Comments

NIH Funding for ME Goes Down in 2018

Posted on October 21, 2018 by Jennie Spotila
Updated May 29 and October 16, 2019 with additional funding numbers.

Fiscal year 2018 is over, so now we can answer the question of whether ME research funding at NIH would go up or down. As I predicted back in July, the answer is down.

image credit: http://jessebharris.com/

Here’s the TL;DR version:

  • NIH funding for ME research decreased 17% 10% 8.6% in 2018.
  • Funding for non-Center grants will decrease an additional 30% in 2019 unless NIH funds enough new grants to replace the expired ones.
  • NIH’s funding is now heavily concentrated at a small number of institutions.
  • NIH’s ancillary activities are not sufficient to overcome the funding problem.
  • Some of the most important contributors are missing in action.
  • NIH must stop blaming people with ME for the low number of research applications.
  • Given that NIH funding has decreased, how should we respond?

2018 Actual Numbers

Based on currently available numbers, NIH spent 17% 10% 8.6% less on ME research in 2018 compared to 2017. How is this possible?

The biggest decrease came in investigator-initiated grants, as I had warned back in October 2017. The ten grants totaled almost $4.7 million. The Collaborative Research Centers and the Data Management Center received just under $7 million combined.**

NIH is currently not providing any numbers for its intramural research, including Dr. Nath’s Clinical Care Center study. I asked when those numbers would be available, and was told it would be several months. Therefore, I expect the final number for 2018 will end up a bit higher, but I won’t speculate as to how much it will change.

NIH released the intramural funding numbers in April 2019. By my calculation, NIH spent $962,552 on intramural projects in 2018. It took months to derive the accurate amounts actually spent on intramural projects. The actual intramural funding totaled $1,146,841. More details on my calculation are available in this post.

So as of today, here are the numbers for 2018 compared to 2017 (You can read the details of 2017 here). This chart was corrected on May 29, 2019.

FY 2017 FY 2018 % Change
Grants/Intramural $6,742,437 $5,810,394 -14.8%
Research Centers $7,225,267 $6,959,487 -3.7%
Total $13,967,704 $12,769,881 -8.6%

Pay attention to that last line. In Fiscal Year 2018, NIH spent $2.3 almost $1.3 million LESS than in 2017. This is terrible news. In fact, it’s akin to sliding down a ramp with grease on the skids.

More than 75% of ME research funding came from just two Institutes: Neurological Diseases and Stroke (NINDS) and Allergy and Infectious Diseases (NIAID). That’s not surprising in itself, but the breakdown between those two Institutes is striking.

NIAID’s investment was nearly twice as large as  2.5 times more than NINDS, and accounted for almost 55% 50% of the total spending on ME. NINDS put the bulk of its investment into the research centers, while NIAID’s investment provided almost 85% of the total spending on investigator-initiated grants.

This is important. NIAID’s contributions are so large that ME research funding would be significantly jeopardized (or enhanced) by a change in that Institute’s funding priorities and decisions. The risk is largest for the investigator-initiated portfolio, as it is funded almost entirely by NIAID.

One more data point to keep in mind: three investigator-initiated grants ended in FY 2018 (Younger, Katz, and Schutzer). This means that grant funding in 2019 will be almost 30% lower, unless NIH funds new grants to replace the expired ones.

What Conclusions Can We Draw?

The funding picture for 2018 leads me to four main conclusions and a strategic question.

The most obvious conclusion is that NIH’s funding is now heavily concentrated at a small number of institutions. The four research centers got more than 65% 55%of the overall funding. Jackson Labs was the huge winner here, receiving $2.7 million combined for its research center and Dr. Unutmaz’s individual grant. That’s almost 24% 22% of the total funding in 2018 going to just one institution.

The concentration of funding at the four Centers is problematic for several reasons. It limits the diversity of ideas and approaches to a small pool of scientists. A change at one of these institutions (such as an investigator moving to a different place) would have a disproportionate effect on the combined portfolio. And if NIH should again lose enthusiasm for the Center model, the field would take a huge monetary loss that could take years to recover from. This is precisely what happened when NIH closed the last group of research centers in 2003.

Remember, NIH has stated multiple times that its strategy is to fund the Centers and wait for that to lead to an increase in investigator-initiated grant applications. In June 2017, Dr. Koroshetz said the Centers would “bring new people in, start research going, and hopefully then populate out further to allow folks to submit really high-quality grants to NIH”.  And in its FY2019 Budget Significant Items, NIH said, “NIH also expects that the CRCs will provide the necessary leadership to attract an increasing number of researchers to this field.”

By concentrating resources at the three CRCs, and assuming that the Centers will do the work of attracting new researchers and spinning off individual grants, NIH is not just taking a slow and conservative approach to growing the field. This approach also limits the directions the field will grow. The ideas and collaborators are limited to what Cornell, Columbia, and Jackson Labs are interested in. That’s fine, if those ideas turn out to be correct. It’s not good if the best answers are outside this circle. De-emphasizing investigator-initiated grants right now could potentially have a limiting effect on the field for years to come.

My second conclusion is that NIH’s ancillary activities are not sufficient to address the problems. The first activity is the NIH conference scheduled for April 3-5, 2019. At the ME/CFS Advocacy Call in July 2018, Dr. Breen of NIAID said the conference would be called “Accelerating Research on ME/CFS” and that planning was underway. Dr. Whittemore of NINDS said that the first day of the conference would be a young investigators’ workshop, modeled on the Invest in ME conference in England.

The second activity is the ME/CFS Working Group of the NINDS Council. Dr. Koroshetz announced the appointed members at the September 2018 NINDS Council meeting: Dr. Steven Roberds, Dr. Armin Alaedini, Dr. Cindy Bateman, Jen Brea (#MEAction), Dr. Dane Cook, Carol Head (SMCI), Dr. Tony Komaroff, Dr. Amrit Shahzad, and Dr. Steven Schutzer. The overall charge to the group is to “Provide scientific guidance to the NANDS Council on how best to advance research on ME/CFS at NIH.”

The third activity is establishing new international partnerships, as Dr. Whittemore described on the July 2018 call. The first is with the Canadian Institute of Health Research, and the second is ongoing discussions with the Medical Research Council in the UK and funding agencies in Australia. International collaborations, especially formalized relationships with analogous agencies, can produce better coordination and funding which then hopefully expands the field.

Despite the promise of these activities, they cannot accomplish enough to overcome the trickle down model NIH is pursuing. Dribbling in small amounts of funding to a very small number of investigators, and waiting for them to attract newcomers to the field, is a very slow and very cautious model. It will not yield results for years. We’ve had conferences and working group recommendations in the past. That has not been enough to propel this field forward at the pace we need.

My third conclusion is that some of the most important contributors are missing in action. In May 2018, Cort Johnson reported that only 12 applications were submitted to NIH between July 2017 and April 2018. I am not aware of how many applications were submitted after that but unless there was a sudden avalanche, the number of applications is too low.

There are dozens of ME researchers who have had NIH funding in the past who do not have it now. Have they been submitting applications? Have they moved on to other funding sources, or lost interest in the field? How many researchers are interested in ME, but have not submitted applications because of perceptions about the difficulty in getting funding? Is ME research still regarded as a kiss of death for a scientific career? Researchers are, understandably, reluctant to discuss this. Lily Chu tried to conduct an anonymous survey on barriers to NIH funding, but not enough researchers responded to make it worthwhile.

Don’t mistake my comments as letting NIH off the hook. The tired old refrain of “we can’t fund you if you don’t apply” is a very convenient way for NIH to pass the blame. We need aggressive, immediate, clear action from NIH at the highest level on an unprecedented scale to address the funding problems. NIH cannot just talk about how much they care, drop in a few bucks, and wait for the researchers to come calling.

Yet there is a kernel of truth to the application problem. We have to do everything we possibly can to force NIH to cough up the money. Researchers, please help us. Think how much stronger our demands would be if we could show Congress that applications have doubled/tripled/quadrupled but funding has not. The only way we can make that argument is to have the evidence, and the evidence depends on you.

When I predicted that NIH funding was going to drop 17% for 2018, I addressed the application conundrum:

We need heroic efforts on all sides. We need NIH to be invest more money, but we also need our researchers to do heavy lifting and get those grants submitted. I know first hand how time consuming writing grant applications can be, and I understand that researchers are reluctant to invest the time if they think funding is unlikely. But we are at the point where submitting more grants is critical, regardless of the predicted likelihood of success.

My fourth conclusion is that NIH must stop blaming people with ME and ME advocates for the low number of research applications and the state of the science. Just about every time NIH is confronted on its approach to ME, we hear some version of “the patients are unreasonable and mean, so no one wants to work on it.” Here are two examples:

  • Dr. Avi Nath: “And we want to really try and help, but we can’t do that if the very people you want to help become antagonistic towards you.”
  • Dr. Walter Koroshetz: “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.”

I have even heard variations of this comment from a few researchers in our field. Don’t be too loud/forceful/demanding, or you’ll scare the poor scientists away.

I have written many times about this blame game, and how well it serves the NIH status quo. As long as people with ME are blamed for chasing away good scientists with mythical  attacks and antagonism, then no one else is accountable. Not enough funding? Our fault. Not enough applications? Our fault.

Here’s the thing. HIV/AIDS activists are loud, forceful, and demanding. ACT UP disrupted the opening ceremonies at the 1996 International AIDS Conference. Thousands of activists occupied the campus of NIH in 1990. If you want to see the perfect call and response of “you activists are being too loud,” read the Washington Post’s 1990 editorial Harassing NIH and the responses from AIDS activists. Then ask yourself this question: is there any evidence that HIV/AIDS activism scared scientists away from HIV research?

As I said over a year ago: “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.” Anyone who repeats the pathetic stereotype that people with ME are to blame for the lack of funding and/or interested researchers needs to sit down and be quiet. It is offensive. It is a distraction.

This leads to my strategic question: Given that NIH funding decreased by 17% 10% 8.6% in 2018, how should we respond?

Some advocates will say we should continue the thanks and positive reinforcement approach. This strategy relies on the fact that, even with the 17% 10% decrease, $11.6 $12.6 $12.7 million is better than any year’s funding except 2017. SMCI and #MEAction have seats on the NINDS Working Group. NIH representatives have admitted in public that ME/CFS is a real disease and needs more funding. We have at least a few allies on the NIH campus. This approach says we should cooperate and be patient.

Confrontation and protest, the counter-strategy to cooperation, relies on different facts. Chief among them is the glacial pace of change. The research center money was awarded two years after Dr. Collins promised to ramp up funding. It has been three years since Dr. Collins said, “Give us a chance,” and funding has fallen 17% 10% 8.6% below the high water mark of 2017.

I know that good research takes time. No one needs to remind me of that. I was 26 when I got sick; I just turned 50. I’ve been an ME advocate for twenty of those years. I am acutely aware of the passage of time. Some things have changed. Many things have not.

I am finding patience and cooperation hard to come by these days. We are falling backwards again. At what point do we say this has gone too far? We must make constant, unbroken, and substantial progress towards effective treatments and cures. If we don’t, then everyone who currently has ME will die with it. Or of it.

 

**Investigator-initiated grants: Davis, Friedberg, Katz, Light, Schutzer, Unutmaz, Williams, Younger, Nacul and Rayhan. Collaborative Research Centers: Columbia, Cornell, and Jackson Labs. Data Management Center: RTI.
Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 30 Comments

Protesting Per Fink

Posted on October 12, 2018 by Jennie Spotila

#MEAction New York is holding a protest at Columbia University on Saturday, October 20, 2018 against the misinformation about ME that Dr. Per Fink is spreading to New York medical providers at the 4th Columbia Psychosomatics Conference.

Who is Per Fink? Dr. Fink is a psychologist physician from Denmark who directs the Research Clinic for Functional Disorders and Psychosomatics. As the name indicates, Fink’s clinic conducts research and treatment of functional disorders. In functional disorders, “symptoms are not better explained by another well-defined physical disease or mental disorder.” Fink expressly lumps ME, CFS, and fibromyalgia into a category he created and names Bodily Distress Syndrome. His recommended treatment is a program of CBT and GET, and claims most people will be cured or significantly better after treatment.

Fink is well-known to the ME community because of his involvement in the case of Karina Hansen. In 2013, Hansen was 24 years old when she was forcibly removed from her home and involuntarily committed to Hammel Neurocenter as a psychiatric patient, despite her ME diagnosis. Fink was one of two doctors overseeing her “treatment” at the institution, and permitted almost no family contact for more than one year. After years-long legal battles, Hansen was allowed to return home in 2017 2016 (as documented in Unrest), and her state guardianship was only terminated this week. Given the deterioration in Hansen’s condition while under Fink’s care, one has to wonder how his other “bodily distress syndrome” patients fare.

Now, Fink has been invited to speak at the 4th Columbia Psychosomatics Conference on October 20, 2018. His talk is titled “Bodily Distress Syndrome or Functional Somatic Syndromes: How to diagnose and treat.” The conference organizers have been made aware of Fink’s track record on ME, and his use of CBT and GET, but he remains on the agenda. This is especially troubling given that Columbia is also the home for the Center for Solutions for ME/CFS led by Dr. Ian Lipkin at Columbia’s Mailman School for Public Health. And it is frighteningly similar to NIH’s invitation to ME-denialist Dr. Edward Shorter to speak to the NIH ME/CFS Special Interest Group.

When researchers and institutions offer the microphone to ME-denialists like Shorter and Fink, we have to speak out against it. When a university of Columbia’s caliber invites one of the people responsible for holding Karina Hansen–against her will and incommunicado for years–to speak at a conference on psychosomatic illness, we have to speak out against it.

This is not an example of academic freedom and divergent points of view. Fink will speak about “bodily distress syndrome,” the landfill he invented for ME and CFS and a number of other medical conditions. This is like inviting a climate change denier to give the keynote address at a UN Climate Change Conference, or inviting Andrew Wakefield to speak at the National Immunization Conference. There is no justifiable reason for it. Academic freedom is an essential principle in science, but it is not an impenetrable shield to be deployed in defense of every misinformed or misguided speaker invitation.

It is time to Stop The Harm. Once again, it looks like people with ME will have to defend themselves. You can join the protest in two ways:

  1. Sign the #MEAction petition.
  2. Show up on October 20th at the New York State Psychiatric Institute. This flyer has all the details: Per Fink Protest
  3. Want to do more? Email or call the people on this list: Per Fink Protest Call List

#ScienceNotStigma

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“It is no bad thing to celebrate a simple life.”

Posted on October 7, 2018 by Jennie Spotila

It’s been twenty-four years. Twenty-four years since the morning I woke up with a sore throat, went to work, and got so sick I could barely walk home. Twenty-four years since I became incurable.

And this year, I hardly noticed.

Over the years, I have marked my sickaversary in different ways (including a cake, of course). I’ve approached the day with sadness or trepidation or determination. Yet this year, I didn’t even think of it when we made our plans for the day. Even after I remembered the occasion, I didn’t feel sad, or even mention it to anyone.

We spent the day with dear friends who have known me for all of these twenty-four years. It was our third Saturday together, watching the Lord of the Rings trilogy in sequence. These are my absolute favorite films, based on some of my favorite books, and I’ve seen them dozens of times. For the first time I watched them with our friends’ bright, clever, funny, talented and creative teenage daughter, who shares my deep love of the films.

We both identify with the character of Eowyn, the shield maiden who slays the Witch King. What does Eowyn fear?

A cage. To stay behind bars, until use and old age accept them, and all chance of doing great deeds is gone beyond recall or desire.

ME is my cage, “a hutch to trammel some wild thing in.” Like Eowyn, I have feared staying behind bars, until use and old age accept them. I have feared losing my chance to do something great.

But what does “great” mean? Artist Austin Kleon wrote a blog post, “Knitting at the end of the world,” in which he quotes Paul Kingsnorth on the dichotomy between fighting and giving up: “Small actions were not actions at all: if you couldn’t ‘change the world’ there seemed little point in changing anything.”

I used to think this way. ME was a cage, and among other things it has stolen my ability to do large things to fight and change the world. I can’t lead an organization or a protest march. I can’t get out into the world in person, to speak and change people’s minds. I thought this meant I would never do great deeds. I was trapped.

But there are other kinds of great deeds, and other kinds of greatness. Kleon quotes George Orwell’s essay England Your England:

We are a nation of flower-lovers, but also a nation of stamp-collectors, pigeon-fanciers, amateur carpenters, coupon-snippers, darts-players, crossword-puzzle fans. All the culture that is most truly native centres round things which even when they are communal are not official – the pub, the football match, the back garden, the fireside and the ‘nice cup of tea’. The liberty of the individual is still believed in, almost as in the nineteenth century. . . It is the liberty to have a home of your own, to do what you like in your spare time, to choose your own amusements instead of having them chosen for you from above.

Enjoying a homely afternoon does not slay the Witch King, but it can reclaim freedom. Choosing my amusements, as Orwell says, is an exercise of personal liberty. Encouraging our friends’ daughter in her own writing and thinking is a great deed. Sharing food and laughs with dear friends is another.

Surviving ME for twenty-four years is not a string of great triumphs. It is a series of smaller choices, and finding contentment amidst the troubles. Building this new life and finding happiness has taken time. It has required courage. I hope that the choices have helped me redefine the bars of the cage, rather than accept them.

After twenty-four years, I have come to reject the false dichotomy that says you change the world or throw in the towel. There is value and meaning in living one’s life and tending one’s own little square of earth. After all, as Bilbo Baggins says in the film version of the Fellowship of the Ring:

It is no bad thing to celebrate a simple life.

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How To Be Sick . . . Again!

Posted on October 2, 2018 by Jennie Spotila

Toni Bernhard has just published a second edition of her classic How To Be Sick, or as I like to call it: The Book That Will Make You A Better Human. I have relied on How To Be Sick since it was published in 2010, and I am pleased to tell you that the second edition is even better.

To be fair, I should say that Toni is one of my closest and most beloved friends. I am honored to appear in the new edition twice. I’m not necessarily an impartial reviewer, but I genuinely believe that this is a wonderful book.

Toni did a lot of rewriting and expanding of the original How To Be Sick for this second edition. She writes that she “had no idea that what began as a collection of notes to myself about how to make the best of living with chronic illness would turn into a book with a worldwide following.” One of the amazing things about Toni is that she has engaged with her ever expanding audience on a daily basis, listening to concerns and answering questions. She has also continued to learn from her own experiences, which unfortunately included breast cancer in 2014.

The new edition reflects many of the things Toni has learned. She has also expanded material for caregivers, and uses language that is more inclusive of people with mental health issues. Toni explains many concepts in greater detail, and uses fewer Buddhist terms, in order to make the book more accessible to a general audience.

One of the most significant upgrades in the new book is the addition of nine new practices: Disidentify from Your Inner Critic, and Crafting Phrases that Directly Address Your Suffering (chapter 8); Giving In Instead of Giving Up, It’s okay if . . , and Try Mind (chapter 9); Take a Break from Discursive Thinking, and Three-Breath Practice (chapter 13); and Doing Nothing, and Pacing (chapter 14). She has rewritten and expanded many more. With all the new material, it’s impossible for me to discuss all the changes.

How To Be Sick is one of my reference books, and I have turned to it many times. Yet when I read this new edition, I was struck by a powerful realization: This book is an antidote to the ways we increase our own suffering by desiring something different from what we have or are at this moment.

Here is what I mean by increasing our own suffering. My internal soundtrack goes something like this: “I don’t want to be in pain. I should not eat that. I should call So-and-So, even though I just want to nap. This house is too cluttered. What are we going to do about health insurance? I want to go for a walk!” Each of those statements is an aversion (to pain), a self-criticism (food, obligation, clutter), a worry (about insurance), or a desire (to go for a walk). And by running that soundtrack on an endless loop, I am increasing my suffering at every moment. I can’t force my pain to go away, or magic myself into enough wellness to go for a walk. I can take steps to address worry or self-criticism, but I can’t will health insurance or clean clothes to appear out of thin air. How To Be Sick is not a magic cure, either. Yet I found that several of the new practices can help lessen my self-imposed suffering.

First, there is my inner critic. I have gifted her with a megaphone and spotlight, and I usually accept her running commentary without question. Toni points out that, “You’ll recognize that the critic is present because you’ll hear the words should and shouldn’t, and you’ll realize that you are directing blame at yourself.” Toni suggests that one way to Disidentify from Your Inner Critic (pages 65-66) is to imagine the Critic standing on stage as she speaks. Hoo boy, when I did that I wanted to storm out of the imaginary theater! I have found that changing my thinking patterns sometimes requires just a quick image or check-in to remind me to shift my outlook. Now that I occasionally check what the Critic is shouting from the stage, it is much easier to tell her to change her monologue (or just shut up already).

Another quick check-in is the Three-Breath Practice (pages 128-129). It is super short and super easy: focus on the physical feeling of three in-breaths and three out-breaths. This is grounding, and it breaks the cycle of whatever soundtrack is playing in your head. I especially like Toni’s suggestion of using it to help with Pacing (pages 142-144). Toni points out, “The reason that some of us tend to ignore pacing . . . is because being active distracts us from our symptoms; it keeps us from tuning in to how our bodies feel.” I don’t know if she had me in mind when she wrote that, but it describes me perfectly. Three-Breath Practice helps me check in with my body, good or bad, and also gives me a little detachment to make a more conscious choice about activity and rest.

There are so many gems in How To Be Sick. My favorite in this new edition is what Toni calls “Try Mind” (page 95). As we try new practices or ideas, or as we try to navigate chronic illness with equanimity, Try Mind says, “I tried to do this today, but I couldn’t. That’s ok. I will try again tomorrow.” This does not let us off the hook at all because we still have to try. But Try Mind gives us room to experiment, to evaluate how well an idea fits us, and to stumble as we move through life.

This forgiving approach to our personal difficulties is so typical of Toni. As her daughter Mara wrote, “If you think she sounds like a person you would want to be friends with when you read her writing—it’s because it’s true.” I have written about Toni’s work multiple times over the years, and something I wrote in 2013 is also true about the new edition of How To Be Sick: “Toni’s writing feels like a friend reaching across the table to pat your hand and offer advice. There is no preaching or judgment here.”

You don’t need to be sick, or a caregiver, or a Buddhist in order to learn from this book. Most (if not all) of us will be sick or a caregiver at some point. We all face change and loss and suffering. We all go through times when we wish for something different or criticize ourselves. When that happens, How To Be Sick can help.

Toni’s compassion and gentle wisdom, and her practical approach to easing our own suffering, is indispensable. Yes, she is my dear friend, but I would say the same thing even if she were not. If I could, I would buy copies of this book for everyone. I highly recommend How To Be Sick as a tool to help you be better.

 

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