Preconditions, Burdens and Ableism

Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or limit it.

Identity is on my mind in the wake of the House of Representatives’ passage of the American Health Care Act. (Here’s a summary of why this bill is so bad for people with disabilities.) Under current US law, insurers cannot refuse coverage if you have a pre-existing condition, and they can’t jack up your premiums for it either.

But under the bill passed last week, more than 130 million non-elderly Americans with pre-existing conditions will lose the protections they have today. Within hours of the vote, Twitter and Facebook were flooded by posts with the hashtag: #IAmAPreexistingCondition. Even celebrities chimed in.

The hashtag is powerful, because it attempts to put faces to all the health problems that we have. Denying health care for pre-existing conditions is denying health care to people. But I will not say: “I am the pre-existing conditions of ME, POTS, and thyroid disease.” I have those conditions, but my health problems are not my identity.

We have to be careful and precise in choosing language. Why? Because changing one word can change the meaning of a sentence, or a protest. I am have a pre-existing condition means I am a person with a complex identity. I am whole and complete, and my disease has not reduced me to just my need for health care. We are not a list of medical words.

We’re all prone to make mistakes with language at times, including ME allies. In describing people with ME, Llewellyn King recently wrote:

They are living a life that is a nearly intolerable to themselves and a massive burden to their loved ones, spouses, parents and caregivers. . . [ME] is vicious and debilitating, leaving the patient confined to a marginal life, a parallel and unequal existence.

I reject this description. I understand that King was trying to convey the devastating suffering of people with ME to a non-ME audience. But that quote makes me nauseous. My life is not a massive burden to my family, and my life is not marginal.

I have ME, and I am disabled. These facts do not make me less of a person. I can’t do all the things a healthy person can, but that does not make me a burden. I can’t participate in life the way I used to, but that doesn’t make my life less worth living.

Describing people as burdens, as marginal, as a list of conditions – this is ableism. Intentional or not, this language communicates that our illnesses make us less than. It reduces our identities to the diseases we have, rather than the people we are. And it tells us that a life with a disease or injury is not as valuable and worthy as a life unaffected by disease or injury. It’s reminiscent of the controversy over the film Me Before You, which romanticized the main character’s choice to kill himself because he is quadriplegic, despite his admission that he could still have a good life.

The intersection of disease and identity shifted with The Denver Principles. These principles, created by a group of AIDS activists in 1983, changed health care and how people with diseases perceive themselves. The Principles begin with a declaration:

We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term which implies passivity, helplessness, and dependence upon the care of others. We are “People with AIDS.”

That declaration is true for everyone with a disease. We are people with a disease or a pre-existing condition or a disability. Terri Wilder taught me this when she said:

I’m not a patient 24/7 days a week. I’m a sister, friend, and daughter. I’m a person first and should be referred to as such. Using person first language is respectful and acknowledges that while ME is a part of my identity I’m not an illness and am only occasionally a patient in a medical provider’s office.

So let’s stop saying “I Am A Pre-existing Condition.” Let’s reject descriptions of ourselves that reinforce the stereotype that we are burdens, that we are marginal, that we don’t matter, that we are not people.

Because I am a person. I am a person with ME, and I deserve the same respect and consideration as everyone else. ME is a part of me, but it is not my identity. Me comes before ME.

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The Halfway Point

We are halfway through fiscal year 2017. How much money has NIH spent on ME/CFS research so far this year, and where will we end up? The short version is: based on current spending, we are unlikely to hit the $15 million that people were hoping for. Hang on, because it’s a bit twisty turny.

To date, NIH has spent $2,861,839 on ME/CFS research in 2017.

That sounds terrible. But let’s dig into that number. So far, NIH has disbursed funding for the following eight grants:

However, there are six additional active grants that have not received money yet this year. I looked at the project start and end date, and when funding was issued in FY 2016. Based on that, I think these six grants are still due for money this year:

If those grants get the same amount of money this year as they did in FY 2016, then we can expect a further $2,202,000, bringing the 2017 total to $5,063,839.

image credit:

This is a problem. Why? Because this would be a 33% decrease from NIH funding in 2016 ($7,637, 591). In fact, it would be the lowest funding number since 2012.

There’s another problem buried in these data. Last year, NIH funded five new projects. This year, only one new project has been funded. New grants would help salvage the funding total from the basement, but will there be new grants?

There are the RFAs to look forward to. The Collaborative Research Center and Data Management Center RFAs should total $6,750,000 this year. Competition is going to be fierce, and it is inevitable that some applying groups will be disappointed.

But there is a hidden opportunity cost here. I am co-PI for one of the applying groups, and I have watched the effort it takes to put an application together, up close. It is an extraordinary amount of work. I think it is unlikely that any group applying for an RFA grant has also submitted other grant proposals this year. What about after the RFA applications are submitted? I think most researchers will wait for their application reviews (projected to be done in August) before writing new applications, because the reviewer feedback can shape new applications.

In other words, while the RFAs offer dedicated funding, there may be a drop in new investigator-initiated grants outside the RFA mechanism. The groups that do not get funded under the RFA will not have new funding in 2017 because they were not able to submit those non-RFA applications.

If this plays out as I have projected, here are the total numbers:

FY 2016 FY 2017 % Change
Regular Grants $7,637,591 $5,063,839 -34%
RFA Awards $0 $6,750,000 promised 100%
Total $7,637,591 $11,813,839 55%

We come out ahead. And the RFAs represent a long term strategy. It’s not just about that influx of $6.75 million this year. It’s about increasing collaboration and data sharing, and spinning off new grants. Hopefully, the $6.75 million to the Research and Data Centers will bring a greater return on investment than if that $6.75 million went into regular investigator-initiated grants.

There is one more speed bump looming on the road ahead: the federal budget. First, there is a (decreasing) chance that the government will shut down this Friday if Congress cannot pass a spending bill. That would bring everything to a screeching halt, including putting together the grant review panels for the RFA applications.

But beyond the shut down, NIH is facing the possibility of deep spending cuts. Nobody knows what is going to happen, and NIH is hedging its bets now. The RFAs include this qualifying language: “Future year amounts will depend on annual appropriations.” In RFAs issued over the last couple weeks, NIH has started saying:

Although the financial plans of NIMH and NINDS provide support for this program, awards pursuant to this funding opportunity are contingent upon the availability of funds. Funding beyond the first year will be contingent upon satisfactory progress during the preceding years and availability of funds.

It’s not over yet.

Note: I edited the first paragraph a couple hours after publishing in order to clarify where we can expect to end up by the end of the year.

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Missing, Not Marching

I should be marching right now.

I mean, I had my plans all worked out. #MillionsMissing tshirt? Check. Wheelchair wheels freshly pumped up? Check. Water and food? Check. Ride to March? Check. Kick ass awesome sign made by my husband? Check.








But here is what the weather is doing right now:








It’s 50-some degrees and raining.

For those of you who have not had the pleasure of sitting in a wheelchair in the rain, you can role play it. Go sit in your yard, preferably in the shade with spring-like temperatures. Have someone sprinkle you with water from the garden hose. For an hour. You are wetter than usual, because more of your body is exposed to rain while you are sitting. You are chillier too, because you are not walking around and keeping warm. Now imagine that water spitting off your wheelchair wheels is soaking your legs. Rain is running down your back. The people around you are shedding rain in your lap. Oh, and your wheelchair might slide a bit on rainy streets.

So I decided not to go. This seemed like the adult decision, paying proper attention to self care and all that. Then I watched the photos start rolling in on Twitter. I started crying when I saw this one:

I began to lay the heaviest guilt trip on myself. It went something like this: “You told people you were going to march. You arranged everything. You offered to put the names of other people with ME on your sign. You asked for input on what your sign should say. Now you’re dropping out. A little rain, and you wimp out. You could have done it. It’s just rain. So what if you get cold and wet. It won’t kill you. You should go. You are a disappointment. You are a coward. You’re a jerk.”

There was a small corner of my brain that was emotionally detached enough to start marveling at this monologue. Was I really talking to myself that way? Yes. Would I speak to anyone else that way? Of course not. Do I believe all those things about myself? Well . . . yeah, I am a disappointment. Really? Well . . . .

I sat with these thoughts for awhile. Did I really think I was a disappointment to anyone for choosing not to roll and sit in the rain? Was it my fault? Ah, there it is. Fault. It is not my fault it rained. And it is not my fault that I could only go to the march in a wheelchair. It really isn’t. But I tell myself that I am the disappointment, because if this is my fault then I have control over it. And I like control.

But control is an illusion. I am sick. I am disabled. I need a wheelchair if an event involves more than a couple blocks of walking or more than a few minutes of standing. Attending the March for Science on a dry sunny day would be a hardship. I would be sicker afterwards, under the best of circumstances. If I were sitting out in the chilly rain, my pain would spike to a level uncontrollable by my medication. And this would set off a physiological cascade that would exacerbate all of my symptoms.

That’s science talk for “I would feel like shit.”

I support science 100%. My family is filled with scientists. My health is very much dependent on science. A lack of science  – especially research on ME – has confined me to that wheelchair. And the wheelchair combined with bad weather prevented me from being able to publicly show my support for science and scientists.

But my beloved city turned out, along with cities all over the world. From where I sit, science matters. It matters very much, indeed.

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Help My Sign!

I am suuuppppperrrrr excited for the March for Science this Saturday, April 22nd. I am doing everything humanly possible to attend. I’ve got extra rest scheduled this week, and a backup ride the day of the March (in case ride #1 falls through). I’ve got my wheelchair, and hydration, and I’m willing to skip the marching bits in order to attend the rally.

But I need a protest sign!

Recent protests have been a showcase for clever, funny, and poignant signs. I want to show the world what science means to people with ME.

That’s where you come in, fellow warriors! Can you help me come up with an awesome sign? Here’s what I have come up with so far:

  • Science > Alternative Facts
  • Only NIH $ Will Get Me Out Of This Wheelchair (see comment from Jenni)
  • Cut NIH $ And You Sentence Me To Life In Chair
  • Science Is Our Salvation
  • Before NIH Life Expectancy Was Age 50
  • I Have ME And I Need Science To Live

If you have any ideas for a sign, pop them in the comments. If you have a favorite from my list, pop that in the comments too. And if you want me to march (well, roll actually) on your behalf, tell me in the comments and I’ll put your name on the back of my sign.

Edited To Add Suggestions:

  • Science Rules
  • Show Me The Science
  • Science Saves Lives
  • Only Science Can Help ME/CFS
  • Science Would Help Me Work Again
  • Without Science, You Would Be Dead By Now
  • NIH Funds = Hope
  • Science Is My Hope For A Cure
  • Help Me Walk Again By Supporting Science
  • People With ME At UNREST Until There Is A Cure
  • Millions Of $ Missing At NIH = Millions Missing From Life
  • Time Flies When You’re Waiting For A Science Miracle
  • Science M.E. Up!
  • UNREST Until Science Cures ME!
  • Make America Smart Again
  • Cut NIH = Make America Sick Again
  • What Will Happen To ME With Funding Cuts?
  • Science Trumps Alternative Facts
  • Science = Hope
  • From Where I Sit: SCIENCE MATTERS!
  • Science = Medicine = NIH Funding
  • Science is True Independent of Your Belief
  • NIH Funding = Science = M.E. Cure
  • I’m marching but I’m not living
  • Give Me Life, Cure M.E.
  • Without Science, We Would Still Be Using Leeches
  • Science Enables or NIH Science Enables
  • M.E. Disables, Science Enables
  • Cure ME/CFS, Science Makes Sense
  • Without Science, My Present Could Be Your Future
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Best Practices

How can people with ME be more engaged in research? I mean really, meaningfully engaged from the design phase all the way through to the dissemination phase?

I have an answer! With the help of #MEAction, I led a group of volunteers to develop best practices for researchers to use as they partner with people with ME. Earlier this week, we published our report and sent it to as many researchers as we could.

This was a terrific project that allowed me to combine lessons I’ve learned in a variety of contexts. I have had the opportunity to serve as a member of FDA’s Patient Representative Program, and I recently qualified as an Ambassador for the Patient-Centered Outcomes Research Institute. I am also a volunteer member of the CFS Advisory Committee’s Working Group on Patient Engagement. It’s been a steep learning curve, but this project gave me a chance to apply what I’ve learned in a way that will specifically help ME researchers.

Every volunteer brought important perspectives to the table, and they dove in to the patient engagement literature. To be honest, I probably tossed them in the deep end. We reviewed some of the articles I’ve acquired, and then discussed how to apply these patient engagement methods in the context of ME research, particularly the new Collaborative Research Centers.

There was a lot to talk about. How should researchers engage people with ME in their projects in a meaningful and substantive way? When should we be brought in (hint: as early as possible) so that our input is not treated as a cherry on top of the dessert? What accommodations will people with ME (and caregivers) need in order to fully participate? How should researchers budget for patient engagement, and how much should people be paid? How can people with ME add value to each stage of the research?

We wanted to get some guidance out to researchers as soon as possible, since the NIH grant applications are due on May 2nd. I was hoping we could write three pages or so. These volunteers hit a home run, and we put out nine pages including references.

Our report: Engaging People With ME as Partners in the Collaborative Research Centers offers the best practices we gleaned from the literature, and applies them to the context of ME research. We hope that researchers will adapt these best practices to their study designs in the ways that make the most sense.

And we intend this to be an evolving document. There is certainly more we could include, and more literature we could review. As people with ME are brought in to the research centers as partners, we will all learn more. I hope that we can update this document in a collaborative way. As we say in the report:

While the RFAs may be the current impetus for engaging with stakeholders, we hope that this will catalyze something more. People with ME can offer so much more than feedback. We can make your research more applicable, more efficient, and more successful. Let’s establish partnerships, because we will make more progress together.

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The Cut

Trump’s proposed budget is out. Among all the cuts – because you have to cut in order to increase defense spending while simultaneously giving the rich a tax cut – among all these cuts is one that people with ME should take very personally. NIH’s budget will be cut by 18% or $6 billion in fiscal year 2018, if Trump’s budgets passes as is. The proposed budget also calls for a reorganization of NIH’s Institutes, but offers little detail. Here’s how I feel about that:

Hang on. That wasn’t enough.


Yeah, that’s how I feel.

This is nothing short of disastrous. NIH is the largest source of biomedical research in the world. NIH scientists discovered the bacteria that causes Lyme disease. They demonstrated the effectiveness of the first drugs used to treat AIDS. The biomedical research enterprise in the United States is built on NIH as its foundation. Cutting that foundation by 18% will be catastrophic for human health.

In addition, more than 80% of NIH’s budget goes out the door to fund academic biomedical research, largely in the United States. How will researchers do their research? I guess they’ll have to do 18% less of it. But it won’t just affect those researchers’ salaries paid by their grants, or the purchase of equipment (I wonder what will happen to the businesses that supply that equipment?), or the training of doctoral and post doctoral students. It will affect American universities, research hospitals, and other research institutions.

The university system is dependent on indirect costs tacked on to grants. Indirect costs are a percentage added to a grant by the university. It covers the costs associated with university infrastructure, like buildings and administration and libraries. If NIH’s budget is cut by 18%, then NIH will fund substantially less academic research. And if substantially less academic research is being funded, then American universities are stuck holding the bag. Because universities will still have buildings and staff and libraries, but a big chunk of that cost will not be covered by the indirect costs normally charged to grants. Trump’s budget may cut taxes for the rich, but it’s one hell of a tax on our universities.

This girl captures my response to this foolishness.

If the negative impacts of such a dramatic cut to NIH are that easy to identify, why is Trump proposing to do it? Apart from Trump’s desire to increase defense spending while cutting taxes, the Administration’s director of the White House Office of Management and Budget offered this explanation: “We think  there’s been mission creep” at the NIH, he said. “We think they do things that are outside their core functions.”


Ok, but so what, right? After all, it’s not like NIH spends a whole lot on ME. Just $7.6 million in 2016. So who cares if NIH has a funding cut, right?

Are you prepared for an 18% reduction in ME spending?

I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states, “Future year amounts will depend on annual appropriations.” So it is possible that future years of funding could be cut or eliminated.

It’s common sense to conclude that if NIH’s budget is cut by 18% next year, every program and RFA and grant pool will be severely cut. NIH will make far fewer grants, and that will hit everybody hard.

But that could even be a best case scenario. After all, if I’m NIH and my choice is between an HIV/AIDS study and an ME study, there are a lot of reasons why I’m going pick HIV. Biodefense? Flu? Alzheimer’s Disease? Epilepsy? Spinal cord injury? Osteoporosis?

We’re not winning out against those diseases now. Do you really think that NIH will say, well, we should spread that 18% cut around evenly across the board. Do you expect that this cut will be applied fairly? Is any university going to support a faculty member who wants to apply for an ME grant instead of  . . . basically any other disease?

ME research is stigmatized now. ME research is on a starvation diet now. What happens in any system when resources become more scarce? The weakest members of the system lose. And they lose hard.

Whatever your political views or affiliations, whatever you think of the current Administration, if you want to protect research funding then you have to make your voice heard. Call your Representative today. Make sure he/she knows that you support NIH funding and ask him/her to do the same.

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , | 13 Comments

A “Standard” Patient

Today, Joe Landson shares his experience as a standard, real patient.

I work occasionally as a standardized patient, though there is not much standard about me.

Standardized patients are actors; we play out a script of symptoms for health care providers and providers-in-training, to prepare them for real-life patients. It’s pick-up work. I do it one or two days per month, on average. And that minimal employment is fine for me, because in real life, I’m dealing with a debilitating disease that most doctors don’t think exists. I’m living with Myalgic Encephalomyelitis, better known as Chronic Fatigue Syndrome. I have no stamina left. All attempts to work full time, or even steadily part-time, have failed, and have usually left me bedridden. I rarely find myself able to put two good days together. Every day in which I feign functionality and sociability, I follow with (several) days of melting into a bed, couch, or easy chair. I’m reduced to a physical, mental, and emotional wreck, simply by acting normal.

In my acting work, I usually meet trainees trying to do a good job and make a good impression. In real life, I usually face doctors who have no idea what to do with me, and try to pawn me off on someone else. At work, I train; in real life, I face skeptical providers struggling with a disease for which no one has trained them.

In both worlds, you’re expected to check the boxes, however pointless this may seem. Once, I had a training session on how to deliver bad news to a grieving parent. I played the parent. The two doctors-to-be could not have been more different in their presentation. The first skipped several steps of his rubric in telling me my young son was not likely to make it out of the pediatric oncology ward. He even swapped my stage name with my ‘son’s’ name, which would obviously be awful in real life. Nonetheless, he succeeded in having a warm sympathetic tone combined with normal human language, and this made all the difference.

The second trainee checked all the boxes. He was clearly prepared to deliver bad news by the numbers, just as the script had taught him. Yet I didn’t enjoy this encounter as much. Why? He lacked a sympathetic tone. He seemed, at some points, to be serving a client on his way to shouting ‘Next!’.

Now, consider an actual medical encounter. The Veterans Affairs clinic has an intake form screening for suicidal thoughts and pain, amongst other things. Are you in any pain? Yes, my back hurts. Upper, middle, or lower back? Well, nurse, my entire spinal cord feels like it’s filled with mild acid, until I exert myself, when the acid slowly intensifies to excruciating levels. No, patient, that is not a valid answer. The pen hovered. Pick upper, middle, or lower. Next! I am not standard; I must learn to follow the script. I never do. I couldn’t play my role when the VA decided that ME/CFS sounded like Post-Traumatic Stress Disorder (PTSD), and treatment for that only annoyed me, or made me worse. As Dr. Nancy Klimas said in a March 2009 interview, if ME/CFS patients have PTSD, it’s from medical encounters.

One Monday, I scheduled an appointment (a real one) through my VA clinic, or rather took the date they gave me in the far distant future. The next day, my standardized patient manager asked me to work a gig… on the very same day of my VA appointment. It had finally happened. My fake medical life had stomped on my real medical life, and the joke is, both are fake. My life has gone full Franz Kafka. You’re welcome.

We managed to resolve the scheduling conflict, but obviously not the underlying one. The sum total of my medical interaction is a hoax, a lie, a simulation. Real or fake, all my medical ‘appointments’ reinforce that there’s not likely to be any effective care for me, because I’m not standard. Patients like me do not fit in today’s medicine. Psychiatry tries to claim us, but fails in shoddy efforts like the PACE Trial. Some doctors have explained to my face that the disease does not exist. It’s not the doctors’ fault, at least not entirely. While research exists, much is contradictory or unreliable. This makes it very hard even to diagnose ME/CFS, let alone to know what to do about it when it is.

Advances in immune science and medicine have lately shown a glimmer of hope in explaining ME/CFS, but we’re not at proof yet, let alone at effective treatment. So I guess I’ll keep living my fake life, until I finally become just as insane as some doctors already think I am.

I should mention, I can only do this occasional standardized patient gigs because my senior citizen mother drives me to and from them. If I drove myself, or took the noisy, floundering Metrorail train, I would tire out all the faster. Then again… I could always ride my coal bucket, just like Kafka in his story.

Posted in Commentary, Occupying | Tagged , , , , , , , , | 16 Comments

Resist. Persist.

The Gulf Stream, by Winslow Homer

Am I the only person who feels like she is in a leaky boat, surrounded by sharks?

Pretty much every time I look at Facebook, Twitter or the news, I find another leak in the boat. And when I look at the things that need doing in my life, I begin to wonder how bad it would be to fall overboard.

So in these uncharted waters, I offer you the things that are helping me #Resist, as well as what is helping me #Persist.

We The Resilient, Ernesto Yerena for The Amplifier Foundation

First of all, I basically can’t handle the news. It’s upsetting, and I quickly get sucked into background reading and fact checking. So I am trying to stay informed without getting overwhelmed, and What The Fuck Just Happened Today? helps me do that. It’s a list of what happens each day with links for more information. The only trouble is that it does skew heavily towards the left, and so I know that I am not necessarily getting dispassionate info. There’s always NPR.

I am also trying to broaden my perspective by listening to new (to me) voices. One gem is the See Something, Say Something podcast. It’s an honest examination of being Muslim in America, complete with legal information and Muslim memes. I love it.

I am also drawing courage from other people’s struggles. Crippled Scholar wrote this fabulous piece about why she is not worried about alienating allies. I recently read How to Survive a Plague, the detailed book accompanying the film of the same name. It is inspirational, moving, frustrating and motivating. I highly recommend both the book and the film.

On the ME front, there is this great post about successful “bird dogging,” which is timely in the United States as Senators and Representatives hold town hall meetings in their districts. Johanna Kaiser made these outstanding remarks during the NIH telebriefing on February 1st. Seriously, if you want to get fired up, read/listen to her. Finally, if you need a dose of inspiration, watch Jen Brea’s TED Talk (again).

It is very important to persist, but also to avoid burnout. I see this in my Twitter feed a lot – how to participate in current events while making sure you still take time for self-care. This is especially critical for sick people! Here’s what’s working for me right now:

I periodically check in with myself: have I eaten? do I need pain meds? do I need to lie down? do I need a quieter environment? do I need to turn my phone off?

I make sure I play the cello every day I am physically capable. I am knitting a cashmere shawl for myself. My husband and I are working our way through a series of funny movies.

I’m also much more aware of the importance of art in my daily life, in a variety of forms. I don’t normally use my spoons for museums, but I made an exception this month and was rewarded by The Starry Night over the Rhone at Arles and Water Lilies (Nymphéas). I also just discovered the work of Michael Robinson. In my more natural environment of words and stories, I am loving the Lore podcast. And although my to-read list may soon eclipse my life expectancy, I am eagerly awaiting my copies of The Stars Are Legion by Kameron Hurley, Thunderbird by Chuck Wendig, and Through the Shadowlands by Julie Rehmeyer

Most of all, I am trying to bring mindfulness and compassion to my day. If I am making coffee, I only make the coffee. I don’t try to take out recycling at the same time. If I am on the phone with a friend, then I focus on that and not on the other things that might distract me. And if I am not able to get something done, even if it desperately needs doing, I am trying not to beat myself up for it.

This is a long haul, and I want to persist.

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RFA Ticker, 2/20/17


Following an excellent suggestion from J.A. on last week’s post, I have added a line to the table of cumulative RFA numbers. This line will track the RFA dollars committed to ME/CFS. I don’t expect it to change this year. It might also be helpful to track regular ME/CFS funding, and I’ll look into the most efficient way to do this.

I thought it might be helpful to check in with where we were this time last year, too. The number of RFAs issued by this time in 2016 is about the same, but the overall funding commitment is lower. This time last year, NIH had already committed $1.5 billion in RFA funding. One possible explanation for the difference is that generally, RFAs are stating the specific commitment for the first year of funding only. Last year, more RFAs specified what would be offered in year two or three or four as well. I suspect this is a reflection of the uncertainty around federal spending and the priorities of this new administration.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 137 352
Dollars Committed $784,157,563 $2,840,680,617
RFAs for ME/CFS Two Zero
ME/CFS RFA Dollars $6,750,000 $0

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
2/13/17 8 $29,600,000 Zero
2/6/17 1 $4,000,000 Zero
1/30/17 1 $10,000,000 Zero
1/23/17 4 $14,250,000 TWO
1/16/17 2 $45,600,000 Zero
1/9/17 0 0 Zero
1/2/17 1 $43,000,000 Zero
12/26/16 0 0 Zero
12/19/16 2 $10,000,000 Zero
12/12/16 28 $125,950,000 Zero
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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RFA Ticker, 2/13/17


NIH issued one RFA last week, for cellular therapies to treat radiation injuries. In that one RFA, the National Institute of Allergy and Infectious Diseases committed $4 million for FY 2018. The maximum project length is five years, although future appropriations will determine funding levels past FY 2018.

Why am I pointing this out? Because this is twice the level of commitment that NIAID is making to the ME/CFS RFAs. Understand this. The science of cellular treatments for radiation exposures is more advanced than the science of ME/CFS, such that $4 million is being allocated for this narrow RFA. And NIAID is investing half as much in the ME/CFS RFAs which are intended to build a major infrastructure piece of our entire field.

We have a very very long way to go, friends.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 129 352
Dollars Committed $754,557,563 $2,840,680,617

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
2/6/17 1 $4,000,000 Zero
1/30/17 1 $10,000,000 Zero
1/23/17 4 $14,250,000 TWO
1/16/17 2 $45,600,000 Zero
1/9/17 0 0 Zero
1/2/17 1 $43,000,000 Zero
12/26/16 0 0 Zero
12/19/16 2 $10,000,000 Zero
12/12/16 28 $125,950,000 Zero
12/5/16 14 $114,800,000 Zero
11/28/16 10 $47,660,000 Zero
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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