NIH Funding for ME Needs Life Support

Fiscal year 2019 is over, and we can now examine how much NIH spent on ME research.

In previous years, I’ve broken down the funding at a granular level. I have done that in a separate post for those who want the details. But as I analyzed the numbers this year, I realized that funding for investigator-initiated research needs immediate life support, or the future of ME research is grim.

Bottom line:  Funding for individual grants has dropped 25% since 2017. To understand why this is a problem, we need to start by understanding the different ways NIH spends and counts research dollars.

For our purposes, NIH research spending on ME research falls into three categories. First, there is investigator-initiated research, which means a researcher receives funding for a specific project. Second, there are the Collaborative Research Centers created in 2017. These Centers are conducting multiple projects and building research infrastructure. Third, there is intramural research done at NIH itself, such as the Clinical Care Study.

NIH adds these three categories of spending together and reports funding as a single number. That annual funding number is what NIH focuses on publicly, such as in the Categorical Spending Chart or in the NANDS Working Group Report. NIH points to increases in the number as evidence that it is improving ME research. When the number goes down, NIH frequently blames it on a low number of grant applications.

In 2018, NIH spent just under $12.8 million on the three categories of research spending (see note 1). In 2019, NIH spent $12 million on two categories: investigator-initiated research and the Collaborative Research Centers (see note 2).

The change from 2018 to 2019 is relatively small: a decrease of about 6%. That sounds pretty good, right? If we look at the total amount NIH has actually spent in the last five years on ME, we see this:

Obviously, 2017 was the high watermark of funding because it was the first year of the Collaborative Research Centers. Yet even with the decreases since then, spending is still substantially more than before the Centers were created. That should be good news.

However, focusing only on the total spending ignores where the money is going. When I examined the different types of spending, I found that the investigator-initiated category has dropped sharply since the Collaborative Research Centers were created. In 2017, NIH invested $6.1 million in investigator-initiated grants. In 2019, NIH invested $4.6 million (same as in 2018).

That is a drop of 25%. In fact, investigator-initiated funding is at its lowest since 2012.

You might be wondering: If NIH funding overall is increasing, what difference does it make if the money is going to the Collaborative Research Centers instead of investigator-initiated grants? The answer is that it makes a huge difference, not only right now but it could have dire long-term consequences for ME research.

A healthy research ecosystem needs diversity in ideas, personnel, and scientific approaches. We cannot predict where the best ideas or breakthroughs will come from. For example, in ME research, not everyone should be investigating the immune system. We need projects on neurology, dysautonomia, metabolism, and so much more. We need early stage investigators, and mid-career, and established experts. We need the longstanding giants and people who are new to the field. We need collaborative teams and we need individual labs. When all of these elements are in balance, and there are adequate resources, the research field can thrive.

Since 2017, NIH funding has emphasized the Collaborative Research Centers over the individual investigator grants. NIH points to the benefits to the Research Center model, with multiple projects organized around a central theme and research group. Dr. Koroshetz explained in 2017 that the Centers are not the solution but seeds that will eventually grow the research.

There are two big problems with this approach. First, and most obvious, is that this approach takes time that we do not have. The second problem is the negative consequences of concentrating resources at three institutions rather than supporting a wider portfolio of research.

We already face a severe scarcity of resources in the ME research ecosystem. For thirty years, we have not had enough money, and so we do not have enough scientists or institutions involved in research. When NIH funded the Collaborative Research Centers, it added new money to the field but it is concentrated primarily at Columbia, Cornell and Jackson Labs. These three institutions alone received more than 57% of the entire 2019 spending. In the short term, that means those three Centers are doing the most NIH funded research, training new investigators, and publishing data.

However, as investigator-initiated funding falls, then the ME field increasingly narrows down to those three Centers and collaborators. That means an individual investigator who is not at one of those three places could have a harder time getting funding. We will lose the diversity of ideas and scientists and trainees that come from funding many different labs. Unfunded investigators will leave the field. Our pool of experts for grant review will shrink further. The Centers can do a great job training early career scientists, but if those investigators can’t get funding to start their own labs, they will probably leave the field too.

Concentrating resources disproportionately at the Centers is also dangerous because it leaves the field vulnerable to crashing. NIH funded CFS research centers in the 1990s. By 2003, that funding was terminated, the Centers disbanded, and overall funding dropped 23% in a single year. Today, the Centers represent such a huge proportion of the research portfolio that if NIH decided to terminate them tomorrow, our funding would drop by more than 60%.

We need the entire ME field to grow, but not at the expense of one type of funding over another. ME research needs the Collaborative Research Centers AND investigator-initiated funding. The significant drop in individual grant funding since 2017 is a sign that we need life support, not patience while NIH waits for the Centers to stimulate the field.

NIH is a large institution, and large institutions don’t change course on a dime. But sometimes it seems like very few people at NIH even recognize the need for significant change. A case in point is the NANDS Working Group report. The Working Group spent a year creating the recommendations in that report, and not a single one addressed the urgent need for more funding. (Read my hot take on that report)

Cort Johnson reported that after the Advisory Council of NINDS voted to accept the Working Group report, several members of the Council told Dr. Vicky Whittemore that, “they had no idea ME/CFS was so underfunded, that so little research had been done, and that such big needs were present.”

How? Is? That? Possible?

The NINDS Advisory Council voted to approve the concept of the Research Center RFA. The Council voted to create the NANDS Working Group. This was not the first time Council heard about ME/CFS or the dire funding situation, not by a long shot. I bet if I went back through the meeting videos, I could find multiple times when it had been discussed in presentations. Furthermore, the Council has previously voted to approve funding for ME grants (every Institute Council votes on grants). So how is it possible that Council did not know?

NIH consistently says that they do not receive enough grant applications, and that the ME community must do more to stimulate research. However, the burden of increasing research funding should not be placed on the people with the disease. NIH’s neglect and, in some cases, active disbelief of ME has led to the situation we are in today. NIH must take all necessary steps to correct it.

This is an extraordinary situation, and one that is very much of NIH’s own making. NIH’s persistent failure to invest the resources necessary to grow this field is how we got here. NIH needs to fix this. It is patently obvious that the field needs more Requests for Applications with set aside funding. We know that RFAs attract an increase in applications. We cannot afford to wait for the Centers to stimulate more applications five, ten, or twenty years from now. We need more funding now. We need more Research Centers now. We need more investigator-initiated grants now.

NIH is not doing enough. The NANDS Working Group report is not enough. NIH’s current investment in ME research is not enough. Dr. Koroshetz and Dr. Collins could be heroes. They have a chance right now to stop the research free fall and get us back on the right track. They have to do this, or people with ME will suffer even more.

 

 

Note 1: Note that NIH calculates the aggregate number differently than I do, because I do my best to exclude amounts that were not actually spent on ME research, as in my 2018 Fact Check post.
Note 2: NIH won’t release its numbers for intramural funding until next spring (and those numbers are not always accurate), so for now we have to rely on just the numbers that are publicly available.
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NIH Funding for ME in 2019: The Details

Every year, I take a careful look at the funding that NIH reports it spent on ME research. Normally, this is mostly a number crunching exercise, but this year I wrote an entire post about a serious problem I discovered when I examined the numbers. I thought it warranted its own post, and you can read that here.

There is still value in the detailed number crunching, though. One kind advocate said that she trusts my numbers more than she trusts NIH’s reporting (thank you!). Let’s dive in!

2019 Actual Numbers

Based on currently available numbers, NIH spent $12,008,817 on investigator-initiated grants and the Collaborative Research Centers in FY2019. More than 60% of that funding went to the Centers. Unfortunately, NIH won’t release its numbers for intramural funding until next spring (and those numbers are not always accurate). I will update this post when those numbers are released, but for now we have to rely on the information that is publicly available.

Here is how 2019 compared to 2018. (You can read the details of 2018 here).**

FY 2018 FY 2019 % Change
Extramural $ $4,663,553 $4,627,302 < -1%
Intramural $  $1,146,841 unknown unknown
Research Centers $6,959,487 $7,381,515 +6%
Total $12,769,881 $12,008,817  -6%

A 6% decrease in the bottom line total doesn’t sound too bad. It’s not until you look at the trend over time, particularly in each category of spending, that you see the dangerous drop in investigator-initiated (extramural) funding since 2017. More on that below.

Of the twelve extramural grants in 2019, seven continued from last year: Davis, Friedberg, Light, Unutmaz, Williams, Nacul, and Rayhan. There were five new grants: Abdullah, Daugherty, Li, Natelson, and Younger, but only Younger’s was a five year grant.

The Research Centers are the same from last year: Columbia, Cornell, and Jackson Labs. Data Management Center: RTI. One note about Columbia’s Center: NIH gave the Center an administrative supplement award. However, Dr. Joe Breen of NIAID clarified that this award funded research on a different disease using methods from the ME work. I have excluded the supplement funding from my calculations.

Once again, NIAID and NINDS provided the vast majority of funding (78%) across all categories. Eight additional Institutes contributed the remaining 22%, almost all of which went to the Research Centers. NIAID split its funding almost evenly between grants and Centers, with 52% going to investigator-initiated grants. NINDS spent 65% of its funding on the Research Centers, and the remainder on investigator-initiated grants.

Three grants are now in their last year of funding (Friedberg, Unutmaz, and Williams). These are all large five-year grants, totaling more than $1.5 million in FY2019 alone. If these grants are not renewed or replaced, investigator-initiated funding will drop by 34% next year.

Which institutions and investigators are getting the most money? These seven investigators received 82.5% of the total FY2019 funding:

  • Jackson Labs/Dr. Unutmaz: $2,770,725
  • Columbia/Dr. Lipkin: $2,241,807
  • Cornell/Dr. Hanson: $1,849,848
  • RTI: $1,176,919
  • Stanford/Dr. Davis: $762,949
  • Ohio State/Dr. Williams: $568,411
  • London School of Hygiene & Tropical Medicine: $539,019

Further Observations

As discussed above, the overall funding declined 6% from FY 2018. However, if we look back to 2017, it’s obvious that we are well below the high watermark of NIH funding to date.

Since 2017, our total funding has declined by 14%, while investigator-initiated funding declined 25%. I first raised a concern about the drop in investigator-initiated funding in 2017. I am now so alarmed by the implications of this that I wrote an entire post about it.

Total Funding Extramural
FY 2017 $13,967,704 $6,128,925
FY 2019 $12,008,817 $4,627,302
% Change  -14%  -25%

What can reverse the trend? NIH must issue more Requests for Applications with set aside funding. I suspect that there are a number of investigators who would submit applications if they knew some were guaranteed to get funding.

My expectation is that NIH funding should grow substantially every single year. That is not happening, but it could. The only thing preventing NIH from setting aside funding for RFAs is NIH itself.

Meanwhile, time passes.

At the NIH ME/CFS Advocacy Call on October 17, 2019, Dr. Whittemore said the Trans-NIH ME/CFS Working Group was working on a strategic plan, with the NANDS report as a starting point. No timeline was provided.

 

**Note that NIH calculates the aggregate number differently than I do, because I do my best to exclude amounts that were not actually spent on ME/CFS research, as in my 2018 Fact Check post.

My thanks to Dr. Joe Breen at NIAID for providing me additional clarifying information.

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I’ve Missed You

I’ve missed you, my lovelies! I dropped off the grid for awhile in hopes of making progress on my book. I wrote some words. I also saw some beautiful things, and visited beloved friends and family. My husband and I celebrated the 25th anniversary of our first date. I made fairy houses for my seven-year-old niece, and my four-year-old nephew told me I looked pretty.

I took deep, freeing breaths.

Yet, it hasn’t been enough. I thought that if I deleted Facebook and Twitter from my phone, put my email on automatic reply, and took a break from obligations, that I would add thousands of words to my manuscript with ease. Nnnnnyeah–that didn’t happen. For the past few weeks, my inner dialogue has gone like this:

Me: Ok! No Facebook. No Twitter. Make the words!

Myself: I can’t.

Me: Where are the words.

Myself: Stop bugging me.

Me: I arranged everything so you could just concentrate and word.

Myself: Back off. Seriously.

Me: WORD.

Myself: PISS OFF.

Then I read Theodora Goss’s post about her burnout: “[S]ometimes I was angry about how much I was expected to do, how much people assumed I could take on. . . . Burnout is when you’re stressed for so long, that eventually you just have no reserves left.”

Burnout? My life is no longer the oil pipeline fire it was a few years ago. I researched burnout back then, and even drafted a blog post about it last year. I wrote, “Burnout is being done . . . with the effort of moving forward, of staying positive, of staying engaged. The problem is having to go to the well one more time and finding it dry.”

So yeah, I’ve been struggling with burnout for awhile. I recognized it over a year ago, and I started trimming activities and obligations. I tried to cut a bit here, get more organized and focused there, assuming that it would be enough to make room for this book and my life and everything would be fine.

And it is better. My stress level is down, to the point where I can take those deep, freeing breaths. But I’m still arguing with myself about making the words. I’m still spending too much time freaking out that things are not going according to my plan. I’m still resentful of even small disruptions, like the noise the cleaners are making in the next room as I type this. I guess I’m still feeling burned out.

My knee jerk reaction to that realization is MOAR RULZ = MOAR WORDS. Ignore the news even more, ignore all of you even more, cut every single thing that is not absolutely essential. Just art harder.

Except . . . that approach is how I got here. When my Mom died and my husband had a stroke (I hate you, 2015), my existence narrowed down to what was necessary for our physical and financial survival. “Me time” was the label I slapped on fulfilling emotional obligations to others. I evaluated every activity and every choice as a transaction. Because my ability to function physically and cognitively is limited and unpredictable, I do something today and can only cross my fingers and hope I’ll be able to do something tomorrow as well. There is enormous pressure to get my energy’s worth, so to speak.

In a blog post with the delightful title Knitting At The End Of The World, Austin Kleon writes that while Nero didn’t literally fiddle while Rome burned, “there’s the other meaning of the word fiddle: to fidget or pass time aimlessly, without really achieving anything. And yet, fiddling, in this sense, is so much a part of how artists arrive at their work: they fiddle around, they putter, they waste time.”

Seeing everything as a transaction, cutting out everything that is not essential to survival, wasting no time on fiddling–this is not how one recovers from burnout. Theodora Goss says that she’s been recovering from her burnout by taking “the Marie Kondo principle of what to keep and what to discard–does it spark joy?–and apply it to my life.” In the last four years, the only impractical thing I’ve done simply for the joy of it is learning the cello, and even then I’ve done it in my usual structured way.

Last week, though, I sat in the car and knit while my husband wandered a Civil War battlefield. I watched the trees, and took one of those deep, freeing breaths. In that moment, I remembered that my feet are on the ground, my lungs are breathing air, and I’m ok. And while I sat in the car, knitting and watching the trees, I thought of you. When I took those deep, freeing breaths, I breathed out the beginning of these words you’re reading now. I need more of those kinds of moments, so I can write.

There is no way to eliminate obligations. I can’t delegate responsibility for our physical and financial health. I also can’t push myself to the next deadline (and the next and the next) in an endless chain of necessary transactions. I can’t buckle down and overcome my burnout with organization and determination anymore than I can cure myself of ME through force of will.

What I learned this summer is that the equation is not more rules = more words. The equation is fiddling + breathing + time + love = more (and better) words.

My feet are on the ground. My lungs are breathing air. I miss you, but I made you some words.

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I’ll Make It Simple

Dr. Jose Montoya has been fired from Stanford University after an investigation into alleged violations of Stanford’s rules of conduct, including sexual harassment, misconduct and assault. The Stanford Daily published an anonymous statement from a group of people affected by Dr. Montoya’s actions:

This past March, a large group of women who have worked under Dr. Montoya came forward with extensive allegations of sexual misconduct, assault and harassment,” they wrote. “The allegations included multiple instances of Dr. Montoya attempting unsolicited sexual acts with his female employees, among many other instances of harassment and misconduct, and were confirmed in an investigation.

I have seen a lot of hot takes about this on Twitter in the last 24 hours, but I’m going to make it very very simple:

This is not about us.

Dr. Montoya’s patients are obviously affected by this, as is his research to some extent. But it is not about us. Neither his patients, nor his colleagues, nor his research subjects are the primary victims here.

This is about the women who reported the allegations, and Dr. Montoya himself.

Stanford conducted an investigation over several months and concluded there was cause to dismiss Dr. Montoya. Remember, though, Stanford’s primary interest is protecting itself from lawsuits–either from the women who made the allegations or from Dr. Montoya. A university investigation is not a court of law, but it’s also not a joke.

Dr. Montoya can appeal Stanford’s decision, and potentially sue Stanford as well. The women who made the allegations can also sue Stanford and/or Dr. Montoya himself. These cases take a long time, but we may eventually learn more details about these incidents. Right now, we have very few facts and speculation is not helpful.

But I’ll make it simple: THIS IS NOT ABOUT US.

This is about the women who made the report. That’s not an easy thing to do. It’s even harder to be the target of harassment and assault. We cannot minimize that harm. If the report is true, then multiple women have been hurt professionally, emotionally, and perhaps physically. And if the report is untrue, then Dr. Montoya has been harmed.

So all the hot takes I saw yesterday? Sit down. This is not about prejudice against ME research or patients. It’s not about finding a way for Dr. Montoya to stay involved in ME research. It’s not about whether we will ever know what really happened.

This is not about us.

If the allegations are true, then I don’t want Dr. Montoya anywhere near ME research and people with ME. I know how hard it is to make a report of sexual harassment. Stanford’s finding of sufficient cause to dismiss, while not definitive proof, is strongly suggestive that the allegations are true. We’ll know more if/when more details become public.

Until then, the most important thing is preventing further harm. No employee, student, or patient at Stanford should be put at risk.

Updated June 6, 2019: The Stanford Daily published a statement from Dr. Montoya provided through his attorney. I will not be commenting on the statement.

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Another NIH Funding Fact Check

In April 2019, NIH finally published their funding numbers for ME/CFS research in 2018. That means it is time for another fact-check and correction!

Update October 16, 2019: as explained below, I received more accurate numbers from NIH and have updated this post to reflect that. For ease of reading, I changed numbers throughout this post as warranted without striking through every previous number. I have also updated the graph, and my original post about 2018 funding.

For the second year in a row, NIH has significantly overstated its investment. For 2018, NIH claims it spent 9% (almost $1.3 million) more than it actually spent. NIH also claims that funding fell by 4.5%, when the truth is that our funding fell by almost twice as much. In a disease like ME/CFS, this has serious consequences because the funding number is at the center of so much policy debate and advocacy efforts.

How Much Was Spent in 2018?

On the Categorical Spending Chart, NIH states that it spent $14 million on ME/CFS in 2018. The chart links to the list of projects and grants included in that number. Here is how it breaks down:

  • Extramural grants: $4,663,553
  • Collaborative Research Centers: $6,959,487
  • Intramural projects: $2,417,815

This comes to a total of $14,040,855, which NIH rounds down to $14 million. But there’s a problem, and it’s the same problem I found in 2017. The intramural number is not limited to money spent on ME/CFS.

The Intramural Problem

NIH lists three intramural projects in 2018:

  • Dr. Avindra Nath’s Clinical Care Center study: $750,000
  • Dr. Leorey Saligan, “Investigating Correlates and Therapeutics of Fatigue”: $172,552
  • Dr. David Goldstein, “Biomarkers of Catecholaminergic Neurodegeneration”: $1,495,263

*record scratch* $1.5 million to Dr. Goldstein for biomarkers? For real?

Actually no, that number is not for real, at least not as far as ME/CFS is concerned. Dr. Goldstein’s project page lists a number of different projects, most of which are related to Parkinson’s Disease. The connection to ME/CFS is the fifth item listed under Collaborations:

e) Clinical catecholamine neurochemistry in chronic fatigue syndrome: We are collaborating in an intramural study of chronic fatigue syndrome (NIH Clinical Protocol 16-N-0058, Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, PI Avindra Nath) by conducting screening autonomic function testing and provocative tilt table testing and assaying plasma and cerebrospinal fluid levels of catechols.

No specific amount of funding is listed for any of the subprojects on Dr. Goldstein’s intramural study. I ran into the same problem last year. In 2017, NIH included the full cost of the Human Energy and Body Weight Regulation Core in its ME/CFS spending, despite the fact that the funding was actually spent on twenty-six different clinical protocols. When I asked NIH how much of the funding could fairly be allocated to Dr. Nath’s study, the NIDDK Office of Communication said there was no such breakdown available. I had to guesstimate how much funding to include in 2017, and originally, I had to do the same for 2018 as well.

I divided the Goldstein funding among all the listed subprojects and collaborations, and arrived at a 2.5% share to the ME/CFS study. Is that fair or correct? No idea!!! The lack of precision in NIH’s accounting (at least publicly) means we have to guess. One thing I do know for sure: NIH should not claim the entire $1.5 million from Goldstein’s work in the ME/CFS category. It artificially inflates the funding number by a significant amount.

In June 2019, I asked NIH for the actual amount that Dr. Goldstein spent on his ME/CFS project. In September 2019, Dr. Vicky Whittemore informed me that Dr. Goldstein’s laboratory:

spends about 15% of his resources on ME/CFS research, including their testing equipment in the Patient Observation Room, Research Nurse, Clinical Research Nurse Practitioner, catechol assay personnel and systems, reagents and disposables, computer software and hardware, and his time and effort. This is all factored into the overall budget his lab receives and his lab does not receive specific funds that are designated to be spent on ME/CFS research. The budgets for the intramural labs are provided to the lab overall and they don’t allocate or budget for specific research projects – they just do the research.

Accordingly, I applied 15% of Dr. Goldstein’s budget ($224,289) to the ME/CFS total. Back in October, I calculated that NIH spent $11,623,040 in 2018. With the addition of the Nath, Saligan, and Goldstein intramural funding, I now calculate that NIH actually spent $12,769,881 in 2018.*

How Big Is The Difference?

NIH’s failure to accurately report the intramural funding number results in a significant overstatement of the ME/CFS investment for both 2017 and 2018.

NIH Calculation My Calculation NIH Overestimate
FY 2017 $14,725,728 $13,967,704 5% more than spent
FY 2018 $14,040,855 $12,769,881 9% more than spent

In case the table is unclear, NIH overestimated its ME/CFS spending in 2018 by 9%, or almost $1.3 million. The overestimate is due to NIH’s failure to assign the correct amount of intramural funding to the ME/CFS total.

The inflation of the funding number also affects the calculation of changes in funding from year to year. Using NIH’s numbers, funding decreased by 4.6% from 2017 to 2018. But using the actual amount spent on ME/CFS, funding decreased by 8.5% in 2018. Here’s a graph of NIH’s calculation compared to mine for 2016 through 2018:

Numbers Have Consequences

When NIH reports inaccurate numbers on its Categorical Spending Chart, those numbers are relied upon by Congress, journalists and advocates, even though the numbers are actually wrong.

The September 2019 Report of the NANDS Council Working Group For ME/CFS Research is a prime example. That report uses NIH’s inflated funding numbers in multiple places, including Figure 1 on page 7. Because this is an official report, the inaccurate numbers will be enshrined in all subsequent discussions. In a research area like ME/CFS, where the annual investment is so incredibly low, relying a number that is off by more than $1 million is a big deal. That $1.3 million is almost enough to fund another Research Center for a year. It makes it look like NIH is doing substantially more than it actually is.

Reporting that funding declined by 4.5%–when it is actually 8.5%–is significant. It obscures the truth and minimizes the very serious funding problem in ME/CFS research. Counting money towards ME/CFS that was not actually spent that way, even if it is due to a sloppy accounting policy and not malfeasance, is misleading. This is true for every research category, but the effect is much stronger for diseases like ME/CFS that are already subsisting on tiny crumbs from the NIH budget.

This is yet another way that the burden of accuracy and attention to detail is shifted to our disease community that is already carrying so much. Why did I have to invest hours of my time over several weeks to ferret out the correct number and pass that information on to you? Why should I have to make my self sicker and do NIH’s accounting job?

Because it has to be done. We need the accurate numbers, and we need to use them everywhere. Use them in talking to Congress, in asking questions of NIH, in participating in discussions like the NANDS Working Group, in speaking publicly about the ME public health crisis, and in writing about it.

I believe my work has shown–over many years–that regardless of the intentions of individuals at NIH and other agencies, we cannot assume that the agencies will do the right thing and report the right thing to us. We have to do this fact-finding work in order to hold them accountable.

If our goal is to secure more research funding in order to identify treatments for patients, then use the correct information. NIH spent $12.8 million on ME/CFS in 2018, not the $14 million that they claim. Funding was down 8.5% in 2018, and we slide backwards down the funding ramp that Dr. Francis Collins had promised us.

Use the correct information. Require NIH to use the correct information, too. And trumpet the truth: ME/CFS funding at NIH fell by 8.5% in 2018.

 

*I’ve corrected that earlier post with these new numbers.

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#MillionsMissing 2019

We are the disappeared
The vanished
The millions missing
Blink
Snap your fingers
Gone
Do you miss us?
Does anyone ask what happened to us?
Does it cross your mind
that we are still very much alive?
We think of you
We have lifetimes to wonder what it would be like to rejoin you
Living
The blink
The snap
Was quick for you
But for us it is endless
Life in slow motion
Eroded down to almost nothing
But not quite
We are the #MillionsMissing
And we have a voice
And we’re getting louder

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I Want To Believe Dr. Collins, But I Don’t

Dr. Francis Collins, Director of the National Institutes of Health, spoke to the ME community earlier this month at the meeting on Accelerating Research on ME/CFS. For the ten minutes he was present, Dr. Collins said a lot of nice things. I sincerely want to believe it all.

But I don’t.

I want to believe that the meeting is “a real milestone.” I want to believe that the Trans-NIH ME/CFS Working Group will “bring forward ideas about new projects, new kinds of funding,” and that those ideas will have Dr. Collins’s “strong personal support” and thus become reality.

Except Dr. Collins’s remarks this month were strikingly similar, in many ways, to what he said exactly eight years ago at NIH’s State of the Knowledge Workshop on ME/CFS Research. In 2011, Dr. Collins pointed out that “we really need to understand a lot more about what subsets might exist.” He said there had been “hopeful presentations” about approaches coming out of new technologies. He expected “new ideas” to come out of that workshop and that “those new ideas might suggest new research.” Subsets, the promise of new technologies, and new ideas. Dr. Collins hit all these same notes in his 2019 remarks.

Even so, I want to believe him. Dr. Collins said, “we are part of a family now.” He said he is impatient for progress, just like we are. He acknowledged that NIH has often not seemed to be as responsive as our community wanted, and he regrets that. Dr. Collins was correct when he said that NIH had ratcheted up funding; there was a 75% increase from 2016 to 2017. I want to believe him when he said, “we don’t want to wait a minute if we can see a way to accelerate that progress.”

Except . . . In 2018, NIH funding dropped 17%. Back in 2015, Dr. Collins promised to ramp up funding, but ramps don’t go up and down like a roller coaster. In 2015, Dr. Collins also said, “Give us a chance to prove we’re serious, because we are.” Yet we already know that NIH’s plan is to plant the seeds of the Collaborative Research Centers and then wait. We are halfway through FY 2019 and NIH has made only two new ME/CFS grants, so we are on pace for another decrease in funding.

Dr. Collins said, “We want to be [the National Institutes of Hope] for ME/CFS.” He said, “We want to provide the kind of hope for ME/CFS that is attached to action . . What follows after this meeting is going to be actions as well.”

I want, with all my heart, to believe him. But I can’t.

It’s not that I think Dr. Collins is insincere.

I don’t believe him because we have heard all this before, over and over for many years.

I don’t believe him because the losses are mounting: The money. The scientists. The years. The people.

I don’t believe Dr. Collins because—in this same speech—he signaled to us that we couldn’t. He said, “We have done what we can in terms of the resources, both intramurally and extramurally.”

NIH has done what it can.

Dr. Collins was, I think, trying to give our community hope. He was saying that NIH has gotten the ball rolling with the Collaborative Research Centers and the young investigators meeting. At the same time, he was telling us to be patient. NIH has done what it can, and he wants us to wait for the Working Group to come up with new ideas. As if these new ideas will be a magical substitute for the solution we all know is needed: large scale research funding. He was asking us to hope that actions would follow this meeting, instead of delivering those actions.

I am long past the stage in my life where I will find hope in promises, especially promises from people in positions of power. To believe such promises requires trust, and I have been disappointed too many times.

When actions prove that a person can be trusted, then I will trust. When I see sufficient actions, then I will have hope. To me, hope looks like that 75% increase in funding, but repeated many years in a row. Hope looks like a dozen more Collaborative Research Centers funded by NIH in the next five years. Hope looks like one hundred NIH-supported postdoctoral fellowships.

There are so many people affected by ME who need hope in order to keep going. They believe that research money and treatments and public acceptance are on the way, and soon. They believe that they can trust our government to do the right thing, if we just provide the right information, if we ask in the right way. Reasonable people, when presented with the facts, will do the right thing. I would like to believe that too.

Yet hope is not a plan. Hope, without action, is just a wish. Dr. Collins quoted Peter Levi, and said, “No action, no hope.” I would like to see every #MillionsMissing event blanketed in signs that say: “No Action, No Hope.”

With all my heart, I want to believe the good things Dr. Collins said. But given everything I have witnessed in the last 25 years, I need a lot more than words.

I will believe in the National Institutes of Hope for ME/CFS when NIH starts acting like it.

 

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Return on Investment II: David Tuller

Last year, I fully endorsed Dr. David Tuller’s crowdfunding appeal in support of his investigative reporting on ME.

This year, I am happy to endorse Tuller’s fundraising once again.

The progress report that accompanies Dr. Tuller’s fundraising request (and also posted on Virology blog) details his research, writing and publications during the last year. A number of those accomplishments were part of the plan he shared in last year’s fundraising, and it’s good to measure his progress over time.

Tuller also summarizes the scrutiny and attacks he has sustained in the last year. The authors of PACE and their like-minded colleagues have made complaints against him publicly and privately. Yet the walls of PACE are crumbling away. It reminds me of this famous quote:

First they ignore you. Then they ridicule you. And then they attack you and want to burn you. And then they build monuments to you. – Nicholas Klein

The true believers in the psychosocial explanation for ME (and make no mistake, it is a belief) ignored, then laughed, and then attacked the many people with ME who criticized PACE. Now they are attacking Dr. Tuller as well. But the data are clear, and more scientists have publicly criticized the flawed science of PACE. Neither Tuller nor people with ME want monuments. We want good science, and treatments based upon it.

Last year, my endorsement of Tuller’s work ruffled some feathers, namely those of Dr. Michael Sharpe, one of the PACE co-authors. Dr. Sharpe recently told a reporter that he was leaving the ME field, so perhaps he won’t notice my comments this year.

But I hope you will notice Tuller’s work. He cannot bring down PACE single handed. We need excellent science, and critical reviews of all the science. We need NIH and CDC to step up and fix the situation they have helped perpetuate. Tuller’s work brings scrutiny and visibility to the scientific malpractice in PACE, and this is a tool we can use to bring about necessary change.

As an individual, I cannot make all these things happen. But I can help, and so can David Tuller, and so can you. Please join me in supporting David Tuller’s work.

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Dr. Collins: Transcript of Remarks on April 5, 2019

Dr. Francis Collins addressed the Accelerating Research in ME/CFS meeting for ten minutes this morning. This is my best effort at a transcript of those comments.

Thank you, Walter. I’m really glad to be able to be here for at least a few minutes to address this distinguished group at what I think is a real milestone in our efforts to understand the cause and ultimately define preventions and cures for ME/CFS. I hope you have heard in that brief introduction from Walter, but I’ll tell you myself, how deeply committed I am to trying to find answers in this circumstance.

I get lots of emails from people who are suffering from this condition. They are heart wrenching, oftentimes, in terms of the stories of what people are going through and their sense of frustration at the lack of progress. I was involved in a very significant way ten years ago when it looked as if we might have for the first time a really exciting clue—and even a clue that would lead to treatment—namely, the suggestion that a retrovirus XMRV might in fact be the pathogen involved in many cases. And it was intensely disappointing for everyone involved when that hypothesis ultimately fell apart and left us once again with no answers to understanding why these hundreds of thousands or maybe millions of people are affected with a condition that we understand so poorly and have relatively little to offer in the way of real hopes for cure.

We supported, then, the National Academy of Sciences to conduct that study which reported in February of 2015 a number of really important recommendations about what needed to be done to try to organize a more effective research focus, a clinical care focus. In responding to that, in October of 2015 we did pull together a much more aggressive plan at NIH, convening this Trans-NIH ME/CFS working group, which has been involved lots of scientists from around the 27 Institutes and Centers to work together to try to identify the most effective path we might take. And it did allow us then to ratchet up our funding—not enough I will agree with you—but certainly in a way that has provided the opportunity to fund the centers that we are now seeing at this meeting, producing a lot of very interesting findings in metabolomics, in immunology, in neuroscience. All of these giving us ideas of what may be going on in the circumstance, but probably also underlining that there are different kinds of ME/CFS and if we really want to understand this disorder, just like any other condition we need to understand the subsets that may have different pathogenesis and therefore be susceptible to different interventions.

We are doing that with virtually every other disease right now. I’m on the way to a meeting in New York to talk about how we might do this for schizophrenia and Parkinson’s Disease: identify subsets that have different kinds of molecular basis. We’re doing that with Alzheimer’s Disease. We do that with diabetes. We do that with heart disease. We need to do that here as well to really understand what is going on with a large number of individuals who have somewhat different presentations and it seems also potentially different causes, once we begin to get that data.

So I’m excited about what I see being presented at this meeting. It does seem to me like this really is a milestone where some very bright, capable groups have turned some of the latest technologies to work on this: the single cell biology efforts to look at the immune system; new and more specific ways to understand metabolomics—which are yielding all kinds of clues that suggest things such as maybe this really is a mitochondrial disorder which we need to understand even better.

I was particularly delighted that as part of this meeting on Wednesday there was a meeting of early-stage investigators and mid-career investigators who are just getting into this field. Because clearly if we want to make progress, we need to see that kind of recruitment of new people with new perspectives, new ideas, bring their talents to this circumstance. If history is any guide it will often be the person who didn’t know a lot about the condition, but brought a particular insight to it, that results in some kind of a new breakthrough that everybody else can then jump on and move forward. And so getting that new talent into this space is a critical part of NIH’s agenda.

We have done what we can in terms of the resources, both intramurally and extramurally. Right after I finish speaking, you will hear about the intramural program right here in this building that is aiming to try to understand in a very detailed characterization way—admittedly with a small number of patients because the program is so intense—to see what we could learn by looking at every possible feature of individuals with ME/CFS. And that will add, I think, also to our body of knowledge.

But I come to you today basically to say that we are listening closely to all of this scientific advance, and certainly to the cries of help from the community. We do want to see coming out of this some new ideas that could result in further NIH investments. We don’t know what they’re going to be, but one of the reasons to hold this gathering was to have all in one place the kind of presentations that would help our Working Group identify what those next opportunities might be, that they can then bring forward ideas about new projects, new kinds of funding, present those to all of the Institute directors to see what we can do in this space. And that will have my strong personal support, because I think we are starting to see now the kind of moment that has been needed in ME/CFS and we don’t want to wait a minute if we can see a way to accelerate that progress.

This is a very tough problem. You all know that better than I do. And it has obviously not been one where the answers come easily or we would have them already. But with the talent of the scientists now engaged in this, and all of you in this room are part of that community, I am more optimistic than I could have been a couple of years ago: that we may ultimately sort this out, find out what the causes are, and figure out the interventions that are so desperately needed.

I know that we have in this particularly community at NIH often not seemed to be as responsive as you would like, and I regret that. But we are a part of a family now. We don’t always agree with each other, but it does feel to me like we’ve come together in a fashion that was needed to address these issues collectively. You should keep pushing us—and I know you will—and we will keep doing what we can to try to find the resources and the talents and the capabilities to move this forward. And you know when we pull this kind of a gathering together again, and we will aim to do that on a regular basis, every time I will hope I will see new faces and new ideas and ultimately very exciting kinds of things that will end up in the front pages of the newspapers: that we finally have come to a place where we understand this condition and we have specific interventions that we know can help people who have waited far too long for that. I know you are impatient. I want to tell you I’m impatient, too.

I wear on my lapel here this little button, which is actually something that got designed back in the dark days of 2013 when we had the government closure for sixteen days. Where this very building had to be emptied out of anybody who was not essential for patient care, and I had to send all the scientists back in the laboratories on this campus home under threat of being criminally prosecuted if they showed up to do experiments. A very dark sixteen days indeed. And I wanted to do something to try to explain to the world why this was a wrong kind of way to try to produce the kind of next insights into medical research that we all needed. I was thinking of black armbands; my wife talked me out of that and said that might be a little extreme. So instead, we decided there had to be some kind of insignia for what NIH is all about. Being a guitar player, I started with a guitar pick. And then it had to have some kind of statement on there, which has now I think caught on a lot of places, basically the statement here is: Hope at NIH. Because we think of the National Institutes of Health also as the National Institutes of Hope. This building you’re in—the Clinical Center—where people come from all over the country, all over the world, because all other options have kind of run out for them is often called the house of hope. We want to be that for ME/CFS.

And yet hope is not something you just sort of throw out there and then walk out of the room. Hope is something that has expectations for actions. Peter Levi wrote this wonderful description of hope which I think of every time I talk about that word: “Hope in every sphere of life is a privilege that attaches to action. No action, no hope.” We want to provide the kind of hope for ME/CFS that is attached to action. That’s what this meeting is about. What follows after this meeting is going to be actions as well. Watch us. Encourage us. Hold us accountable. We want to be part of your family in the best way. Thank you all very much for the chance to say a few words.

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NIH Deadlines

In the next two weeks, there are three important opportunities for the ME community to engage with NIH.

April 4th and 5th: NIH is hosting the Accelerating Research on ME/CFS Meeting. Take a look at the agenda and invited speakers. The organizing committee of this meeting is comprised mainly of ME scientists and advocates, and as far as I can recall this is the largest ever ME community representation on an NIH meeting committee. You can watch the meeting online, and the link should be posted to the meeting information page.

April 9th, 2pm (Eastern time): NIH will host another advocacy call. To participate, call 866-844-9416, and use passcode: 7178985. No agenda has been posted, and it comes right on the heels of the research meeting.

April 15, 2019 Deadline EXTENDED to May 1, 2019: The National Advisory Neurological Disorders and Stroke (NANDS) Council Working Group for ME/CFS has issued a Request for Information to inform its work. The Working Group has asked for input on ten questions. You can view the questions and respond on this webpage, but note the deadline of April 15th! You have two weeks for your response.

There is one odd thing about this Request for Information. Some readers will recall that NIH issued a similar RFI in 2016. NIH received over 460 pages of responses, which you can still read online. There is substantial overlap in the questions from 2016 and this year. Hopefully the answers will add enough new information to be worth our time in responding and the Working Group’s time in reading.

 

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