RFA Ticker, 1/9/17

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So. Is anyone surprised that it is January 9th and we do not have the promised RFAs? I didn’t think so. Will we hear an announcement at the CFS Advisory Committee meeting this week? I don’t know.

The question that I pose to all of you is: are you ok with this? Are you satisfied with how this is unfolding? Is NIH working quickly enough for you?

No? Then I suggest you do something about it. Because if you are not happy with this, you shouldn’t just cross your fingers and hope this all works out.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 121 352
Dollars Committed $680,707,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
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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Zero, Zilch, Zippo

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Zero, zilch, zippo, nada, cero, null, nulla, sifr, nul’, ling, nialas, sero, naught.

No matter how you say it, we got nothing.

Despite the promise in October 2015 that a request for proposals would be issued “soon.” Despite Dr. Collins’s statement to NPR in November 2015 that NIH would “ramp this up.” Despite Dr. Vicky Whittemore’s estimate at the May 2016 CFS Advisory Committee that the RFAs would be issued by June or July 2016. Despite NIH’s public statement in the Federal Register in October 2016 that the RFAs would be published in December 2016.

We. Got. Nothing.

Specifically, NIH announced on the last business day of December 2016 that the RFAs are now expected to be published by the end of January 2017. NIH said that “due to a high level of interest from multiple NIH Institutes and Centers, several rounds of revisions were required, and a number of finishing touches are necessary to optimize the funding announcements.”

Remarkably, Dr. Francis Collins even made a statement on Twitter:

This very public update on the status of the RFAs is clearly the result of activism. First, Terri Wilder/MEAction and I launched a public effort to urge Dr. Collins to keep his promise to the ME community. Then Janet Dafoe suggested that people with ME tweet Dr. Collins with their pictures and a statement that they are waiting for funding.

This filled Dr. Collins’s Twitter feed with dozens of pictures of severely ill people with ME, in a very moving wave of activism.

These public acts holding Dr. Collins accountable for his broken promise led to the statement on Friday about the delay. The reason, according to Dr. Collins and the public announcement, is that a high level of interest from the Institutes resulted in revisions and “finishing touches.”

These RFAs have been in progress since June 2016. In October 2016, NIH said they would be out in December. Was there an increase in the level of interest from the Institutes between October and December? More importantly, will this increased interest lead to increased funding? Dr. Whittemore told me by email in December that the money was committed, so that the continuing budget resolution would not impact the funding. If the money was committed by December, I don’t think it’s likely there was a last minute surge of interest and funding.

NIH has moved the goal posts again, this time to the end of January 2017. A reasonable person might think that this public statement of the new deadline would ensure that NIH meets it. But that reasonable person should take into account the previous public statements by Dr. Collins and by NIH in the Federal Register. NIH has not come through on previous self-imposed deadlines. It remains to be seen if this time it will be different.

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CFSAC Meeting Information and Logistics

The federal CFS Advisory Committee meeting is only two weeks away. This will be an in-person meeting, but will not be held in the Health and Human Services building. Denise Lopez-Majano and I reached out to HHS for important information about the meeting logistics.

Location: The meeting will held on January 12th and 13th at the Barbara Jordan Conference Center (2nd floor) of the Henry J. Kaiser Family Foundation – 1330 G St, NW – Washington, DC 20005. The building is ADA accessible (modular wheelchair ramp, elevator, etc). At this time we do not know about security procedures for entering the building. For those arriving by public transit, the Metro Center Station, 607 13th St NW, serviced by the Blue,Orange, Red and Silver lines, is about 2 blocks east of the Kaiser Family Foundation. The station’s only street elevator is on the east side of 12th Street north of G Street.

Important Note About Location: The Kaiser Foundation building is only three blocks from the White House, and the meeting will be held one week prior to the inauguration. We have no information on whether there will be traffic disruptions or parking issues in the vicinity.

Rest Area and Restrooms: The meeting space will have a lounge area (sofa, loveseat) where people can rest while still listening to the meeting. An additional small, quiet rest area is located on the 3rd floor (accessible via elevator). The restrooms are estimated to be about 50 feet away from the conference room.

Food Service: There will be no food service at the meeting, and the building does NOT have a cafeteria. You will be permitted to bring your own food, have food delivered to the building, or leave the building to get food. There are several takeout places within a block or so, including a pizza place right across the street.

Registration Deadlines: If you wish to attend the meeting in person, or if you want a public comment slot (in person or by telephone), you must send an email to cfsac@hhs.gov by the close of business on January 5, 2017. You may also submit written comments (details in the Federal Register notice), and we have heard that the deadline for that is also January 5th.

Public Comment Topics: You may offer public comment on any topic relevant to ME. However, the Committee has specifically requested comment on:

  • school accommodation issues
  • methods/programs for meaningful stakeholder engagement
  • clinical care and medical education challenges
  • and/or the stigma associated with this disease

Don’t let this important opportunity go to waste. Do what you can to make our voices heard. Attend the meeting, offer public comment, or watch the meeting via webinar. CFSAC needs to hear from us so that it can make the best possible recommendations to HHS.

My thanks to Commander Gustavo Seinos, the Designated Federal Officer of CFSAC, for providing some of the details about logistics.

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A Myalgic Carol

Or, A Most Merry Tale of Encephalomyelitis, by Joe Landson

59Dr. Stephen Straus was surely dead. Lo, he had been dead these nine-and-one-half years, but that made no difference to Ebenezer Scrooge, MD, PhD, as he locked up the Office of Fatigue and Lassitude, or OFAL as it was known, for the night.

OFAL handled what had been known as neurasthenia, myalgic encephalomyelitis, chronic fatigue syndrome, ME/CFS, systemic exertion intolerance disease, or whatever new epithet it now went by. Scrooge had been managing the office — and handling the ornery patient population — since Dr. Straus had retired in 2006. Dr. Straus died of brain cancer in 2007, but the problem of ME/CFS remained unsolved, and dumped on Scrooge.

The problem of the illness was one of classification, he ruminated as he shrugged into his long gray coat for the short walk to his beige sedan. These patients seemed to have nothing in common beyond their vague, ill-defined symptoms. Dr. Straus had never found a common thread; so, of course, there couldn’t be one. What to make of this heterogeneous patient community? One solution was to group them into smaller categories based on symptoms, rather than look for data that might answer the question. So Scrooge had been crafting a system for dividing them into zones of heterogeneity.

His rumination was interrupted by a distraught middle-aged woman in a long red coat, of the cut and style fashionable about a decade prior. Kleenex tumbled out of her scuffed, capacious purse as she shuffled uncertainly towards him in the wide, empty hallway of NINI, the National Institute of Neutrophilic Inquiry.

“Dr. Scrooge? I’m Laura Tompkins. They say you can help us with ME/CFS. You’re the expert. I don’t care about myself, it’s my son Timothy. They’re threatening to kick him out of school, and blame me for his being sick…”

“How did you get in here?”

“Oh, I just told them I was an ME denier. They let me in, and invited me to give a speech.”

“Well, in any case, you shouldn’t be here.”

“Now that I am, can you tell me what you’re doing about ME/CFS?”

A tense pause. “I’m dividing it into zones.”

“What are you actually doing for patients?” Laura Tompkins demanded. “For housebound adults, and children like my son Timothy?”

“Madam, I’m a researcher. If your son needs help, are there not psychologists? Is there no Graded Exercise available?”

“None of that helps! Why don’t you DO something? Why can’t you have an actual treatment trial? Why did you give the disease an awful name?” Laura asked.

Scrooge shook his head. “OFAL is an acronym; everyone in Washington has one!” he snapped.

“No, no, I mean AWFUL!” Ms. Tompkins cried in frustration.

“There seems to be an echo,” Scrooge grumbled. He was losing patience with these patients. And Ms. Tompkins had lost patience with him. She watched him go, shaking her head in disbelief.

Scrooge turned out of the NIH parking garage and drove home towards his Michael Bolton album collection. Traffic was light. It was a bitterly cold late December evening, but strangely dry and bare through Bethesda and the I-270 corridor.

After a tasteless microwave meal, Scrooge pulled his chair up to his home computer. He wanted to check the citation and view counts for his latest paper, on building a framework towards creating zones for ME/CFS classification.

Scrooge froze. Looking at his computer screen, Dr. Scrooge saw Dr. Stephen Straus’ face floating before his eyes.

He checked the cable. He checked the switch. The computer was not on. He always turned it off when he left for the office in the morning, always turned it on after dinner to check the citation counts.

Scrooge shook his head clear. He must be seeing things. He turned the computer on, and did a virus scan before he settled into tabulating.

That’s when the printer started up.

The yield was small at first, but soon there were reams — reams of paper quoting Straus, every time he had thrown shade at ME/CFS, or expressed disdain for patients. Remarks based on slipshod studies. Remarks about psychiatric symptoms. Remarks about patients needing help to drive their BMWs. (Laura Tompkins had never been in a BMW; and at the rate he was going, Tiny Tim Tompkins would never drive anything.)

As he tried to stem the tide of printing, Scrooge froze again. There was Straus, seated in Scrooge’s worn, puke-green recliner.

“Good evening, Ebenezer,” Straus intoned.

“Wha— What is…”

“This is the paper trail I authored in life, Ebenezer,” Straus answered Scrooge’s unfinished question. “Is it strange to you?”

“N— No.” He had been peddling these same half-truths and equivocations for years. Nothing had really changed.

“I was a respected scientist; I did real work. But my lot now is to wander amongst the lost souls of those I disparaged. They’ve shown me the true effect my words had on them.”

Scrooge said nothing. Perhaps that microwave meal was past its expiration date and he had indigestion, he thought.

“It’s not too late for you, Scrooge. Will you make an effort to help these people? Or will you continue to disparage them as I did?”

“But how can I help?”

“Are there not psychologists? Is there not graded exercise?” Straus taunted Scrooge with his own words.

“It’s not like they’re dying, or anything!”

“True. These patients are not dying in droves. Rather, many experience a living death.”

“That’s nonsensical. How can they be dead and alive at the same time?”

“Yet I am dead these nine and one half years,” Straus said soberly. “And still I live, dominating the ME/CFS research agenda at NIH. What’s that, if not a living death?”

“Point taken,” Scrooge muttered. He had never moved outside of Straus’ shadow, and knew he likely never would.

And so Straus sent Scrooge on a journey with three spirits: The Ghost of ME Past; The Ghost of ME Present; and The Ghost of ME Future.

The Ghost of ME Past showed Scrooge the early years in the AIDS crisis, when NIH suspended double-blind trials to find something, anything, that stemmed the tide of death. Scrooge was young and eager then. He remembered it was so exciting, actually helping patients, instead of insulting them and dividing them into zones! But the Ghost also showed Scrooge how ME patients languished as years went by with no treatments. Researchers became interested and then turned to other places, where the money was. And Scrooge’s old friend Straus pronounced his conclusion that ME patients just needed to buck up, stop whining, and think themselves to health.

The Ghost of ME Present showed Scrooge the NIH’s Microbiome Project; the All of Us Project (the Precision Medicine Initiative), and the recently-announced program to study molecular changes during exercise. Any one of these endeavors could include ME/CFS patients, but none did. The Ghost took Scrooge to offices around the country, to scientists with good ideas, who just needed funding to test hypotheses and gather data. Scrooge also saw his colleagues cheering behind his back, laughing raucously: “Three cheers for Scrooge’s Heterogeneous Zones!”

Worst of all was the Ghost of ME Future, showing psychiatrists, the school system, and child protective services ganging up on Laura Tompkins, ‘proving’ that she was harming Tiny Tim Tompkins with a bad home environment, and taking him away. Tiny Tim ended up institutionalized, where he never improved, but merely existed. The fight forced Laura into a crushing relapse of her own. Most of all she was despondent, feeling she had failed as a parent.

Finally, Scrooge’s own funeral, sparsely attended.

Scrooge awoke. It was Christmas Day. Lest he be tempted into thinking it was all a dream (or a virus), his living room floor was still carpeted with printouts.

He wrote Ms. Tompkins, wishing her a Merry Christmas. He wrote her school district, offering to come and speak to officials about ME/CFS. Soon, Scrooge became like a second father to Tiny Tim, and served as an expert witness in defense against Münchausen Syndrome by proxy charges.

Most of all, Scrooge visited his colleagues at NIH, showing them how interesting a problem ME/CFS was. He worked tirelessly to reverse the stereotypes of ME patients as whining, middle class women. He helped write funding announcements, review ever increasing numbers of grant proposals, and promote collaborations and cutting edge technologies. And when, years later, Scrooge passed away, he was hailed as a hero by the patients who had despaired of ever securing his help.

From Charles Dickens’ original story:

Some people laughed to see the alteration in him, but he let them laugh, and little heeded them; for he was wise enough to know that nothing ever happened on this globe, for good, at which some people did not have their fill of laughter in the outset…

The End

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RFA Ticker, 12/26/16

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No Christmas joy for ME/CFS research at NIH. Only two RFAs were issued last week, and neither were the RFAs promised to us. It appears that the RFAs are coming . . . at some point. Dr. Vicky Whittemore told me by email last week that the continuing budget resolution will not hold up the RFAs. She said, “The funds are committed, so it won’t impact the RFAs.

After ME Action, Terri Wilder and I called on Dr. Collins to keep the promise he made to the ME community, Carol Head of Solve ME/CFS Initiative was also in touch with Dr. Whittemore. Carol told me, “She has confirmed that the NIH is working hard through an intensive process involving many institutes, to get the RFA’s out the door as soon as possible.  Francis Collins is well aware of, and supports, the NIH commitment to the ME/CFS Funding Opportunity Announcements.”

I want to be very clear about something: NIH itself publicly said the RFAs are “expected to be published in December 2016”. That is not a deadline that we set. Nor is it an arbitrary date pulled out of the advocacy hat. NIH stated the RFAs were expected in December. By putting that date in the Federal Register Notice of Intent, NIH made it seem like a sure thing. It’s not as formal or binding as Dr. Whittemore’s statement at the May 2016 CFSAC meeting that the RFAs would be issued in June or July 2016.

It should be obvious that when NIH publishes something in the Federal Register, researchers and others will rely on that information. How many ME researchers are holding off on other grant applications because they are waiting for those RFAs? I do not doubt that Dr. Whittemore and others are working hard to get the RFAs out the door. But obviously, the Institute support is not there. And despite Dr. Collins supporting the commitment to the RFAs, that is clearly not carrying enough weight internally to speed things along.

I believe that an internal statement from Dr. Collins to whatever Institutions or individuals who are holding up the RFAs would go a long way to solving the problem. When people know the Director wants something, that thing usually happens. So, despite everything else on my personal and advocacy plate today, I am emailing Dr. Collins again to remind him of his promise to us. Please join me.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 121 352
Dollars Committed $637,707,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
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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Dr. Collins: Keep Your Promise!

This is a call to action. I hope you will join me in demanding that Dr. Collins keep NIH’s promise to the ME community. (Edited to add: this action originated with MEAction. I’m just helping to boost the signal.)

The NIH announced that it would fund ME research by publishing two Funding Opportunity Announcements (FOA) by December 2016, but it is about to miss its first deadline.

On Oct. 21st, the NIH released two Notices of Intent to publish two FOAs for ME/CFS by December 2016. As of today, they have not been released.  The two FOAs are intended to establish collaborative research centers and a data management and coordination center. These FOAs are expected to provide set-aside funding, critical to attracting researchers driven away by a lack of funding.

Join ME activists from around the country to demand that NIH Director, Dr. Francis Collins, keep his promise to publish two FOAs, which will provide funding to researchers investigating ME.

Join us in tweeting, emailing or calling him now before the offices close for the holidays. See sample scripts below. We will not wait any longer for Dr. Collins to act on his word.

Speaking about the lack of FOAs for ME, activist Jennie Spotila said, “More than halfway through December, the promised RFAs for the ME/CFS research consortium and data center have yet to materialize. Will we see them this month? Your guess is as good as mine.”

Terri Wilder, an activist from New York, stated,  “Francis Collins has disappointed the ME community once again with his broken promises. When is the charade going to end?  People with ME demand that the two FOAs be released now! Our lives depend on it.”

Suggested tweets:

@NIHDirector Where are the ME Funding Announcements?  Release them NOW!
@NIHDirector You promised ME Funding.  People are sick. Do your job!
@NIHDirector Release the ME FOAs NOW!
@NIHDirector People are sick. Release the ME FOAs NOW!
@NIHDirector You have had more than a year to keep your promise and issue RFAs for ME. Do it now!

Suggested email:

E-mail Address: execsec1@od.nih.gov

Dear Dr. Collins,

My name is _____ I have been sick with ME for ____ years. I have lost ____  OR

My name is ____ My daughter/son/family member has been sick with ME for ____ years. She/he/they has suffered ___ and lost ___

(Keep it brief so that you can get quickly to the ask below)

I was thrilled to read the NIH’s two Notices of Intent to publish two Funding Opportunity Announcements (FOA) for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by Dec. 2016.

To date, they have not been released. The FOAs are critical to moving research forward for a disease that is destroying the lives of as many as 2.5 million Americans. We will not accept neglect any longer.

Dr. Collins, we call on you to keep your word. Release the two FOAs now.

In urgency,

Sign your name

Suggested phone call:

Phone Number:  301-496-2433

My name is _____ I have been sick with ME for ____ years. I have lost ____  OR

My name is ____ my daughter/son/family member has been sick with ME for ____ years. She/he/they has suffered ___ and lost ___

I’m calling to leave a message for Dr. Francis Collins. I am asking Dr. Collins to release the Funding Opportunity Announcements that he promised for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) now. The FOAs are critical to moving research forward for a disease that is destroying the lives of as many as 2.5 million Americans. We will not accept neglect any longer.

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CFSAC Around the Corner

The next meeting of the CFS Advisory Committee will be held Thursday, January 12th, and Friday, January 13th. This is an in-person meeting, and will also be webcast. Note that the Thursday meeting runs from 12 pm to 5pm, while the Friday meeting is a full day.

This will be the first in-person CFSAC meeting since August 2015 (!), and the first meeting organized by the new Designated Federal Officer, Commander Gustavo Seinos. The meeting will NOT be held at the Health & Human Services building. Instead, the meeting will be located at the The Henry J. Kaiser Family Foundation’s Barbara Jordan Conference Center – 1330 G ST, NW – Washington, DC 20005. According to the Federal Register Notice for the meeting, you will still have to register in order to attend in person (registration instructions have not been posted yet). If you are planning to attend in person, remember that the inauguration is only one week later (January 20th), so DC will be more crowded than usual.

Thirty minutes will be allocated for public comment on each day of the meeting. The Federal Register notice has details on providing oral and written comments, but the most important thing to note is that there are deadlines:

  • To sign up for oral comment (in person or by phone), you must request a slot by sending an email to cfsac@hhs.gov by January 5, 2017. The email should contain the speaker’s name and the telephone number at which the speaker can be reached. Oral comment is limited to three minutes, which means no more than twenty people will have the opportunity to speak.
  • To have written comment provided to CFSAC members, you must submit it prior to the meeting. You are limited to five single-space pages. See the Federal Register Notice for more details.

There is no agenda for the meeting yet, but there should be updates from the working groups formed after the May 2016 webinar meeting. The Stakeholder Engagement Working Group (of which I am a member) will present an interim report on its discussions of how to engage community stakeholders in research efforts. A second working group was formed to examine the feasibility of HHS and the Department of Education to collaborate in providing resources for parents of young people with ME/CFS and school nurses, but I have no information on the status of that group. Dr. Jose Montoya agreed to lead a working group to develop a detailed supporting case for a substantial increase in research investment, but I have no information about the status of that group either.

If you need fodder for your public comment, you could take a look at my summary of the May 2016 webinar meeting. A very important issue is the CDC’s refusal to remove PACE-based treatment recommendations from its materials, despite the reduction of PACE to a steaming hot mess after reanalysis of the data using the original protocol. You could also look at my summary of NIH’s research funding in fiscal year 2016 and/or the P2P Federal Partners Meeting report. Building on Terri Wilder’s excellent public comment from the May 2016 meeting, you could talk about #MillionsMissing. The NIH Clinical Care Study has recently revised its protocol and appears to be recruiting, and there is also the Shorter Fiasco to discuss.

Finally, there are some changes to CFSAC that you should review. Due to term limits, CFSAC is down to only seven out of thirteen voting members. I do not know if new members will be appointed prior to this meeting. New ex officios from the Department of Defense and the Veterans Administration have also not yet been named. Finally, the new charter added a new purpose on which CFSAC can make recommendations: “strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research.” You can read my summary of all the charter changes in this post.

Despite HHS’s poor record on adopting CFSAC recommendations, and despite how frustrating the meetings themselves can be, CFSAC is still our major public venue to learn about HHS activities and to provide input to HHS on the record. As I’ve said before: if someone offers us a microphone, we have an obligation to speak. No one will speak for us if we refuse to speak for ourselves.

My thanks to Denise Lopez-Majano, whose assistance made it possible for me to write this post.

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RFA Ticker, 12/19/16

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There was a veritable flurry of RFAs last week, with the most issued in any single week since I started tracking last year. But more than halfway through December, the promised RFAs for the ME/CFS research consortium and data center have yet to materialize. Will we see them this month? Your guess is as good as mine.

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 119 352
Dollars Committed $627,707,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
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, 12/12/16

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It’s December and the news we’ve all been waiting for – the announcement of ME/CFS RFAs – has not come. But other things of note have been happening. On the RFA front, NIH has passed half a billion dollars in RFAs for the year, with more than $100 million issued just last week.

In news related to ME, the Trans-NIH Working Group has published a few items that we have been awaiting. Dr. Vicky Whittemore’s presentation on NIH research efforts from the October 2016 IACFS/ME meeting has been posted. One item of note is that apart from the upcoming research/date centers RFA, additional RFAs are part 0f the long-term goals for 2018 and beyond (and even then are not promised).

Of greater interest is the NIH Portfolio Analysis for 2007-2015. There is not a lot of detail in the analysis, and this obscures some interesting discrepancies. For example, page 2 presents a chart of research spending for each year. For 2010, the funding listed is about $4 million. But as I’ve previously noted, NIH originally claimed more than $6 million was spent on ME/CFS that year. Once you strip out the unrelated and XMRV research, the number is much closer to $4 million. There is no explanation in the portfolio analysis for where the $4 million figure came from, or when NIH decided to stop counting the unrelated grants. The conclusions drawn from the portfolio analysis (page 6) are disturbing, but not new. There is a very small pool of ME/CFS investigators, few new investigators are coming in, and sample sizes are very small. The single most important way to fix these problems – money – is not acknowledged.

The final news is the long awaited publication of a summary of the federal partners meeting on the P2P report. That meeting is the final step in the Office of Disease Prevention’s P2P process, as I noted in June 2015. The federal partners meeting was held in May 2016, 18 months after the P2P meeting, but we are just getting the report now. There are a lot of things to discuss about this report, but I will just point out one thing for now:

[T]his summary is intended to be a blueprint for the entire ME/CFS community. All stakeholders, including academic researchers, companies, government agencies, patient advocacy groups, and patients and their families, have a shared responsibility for meeting the needs described herein, and thereby improving the lives of people living with ME/CFS.

It is remarkable that the summary is intended to be a blueprint for all of us, when only federal partners participated in creating the blueprint. I see many places in this summary where the perspective of non-federal partners would have greatly improved the comprehensiveness and applicability of its conclusions.

One final note: Dr. Collins is very interested in remaining in his post, if President-elect Trump offers it to him. (hat tip to Denise Lopez-Majano for pointing me to that article)

Here are the current cumulative RFA numbers:

FY 2017 FY 2016
RFAs Issued 91 352
Dollars Committed $501,757,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone:

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
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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The Wall of Nope

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from The Oatmeal

I have reached a new low in life with ME. I call it: The Wall of Nope.

The Wall of Nope is not a physical crash. It’s an inability to deal with obligations and necessary things.

Here’s an example: I’m talking to a friend on the phone, and another call beeps in. I check the voicemail after finishing my call and even though I physically have the energy to return the call, I suddenly hit the Wall of Nope and don’t do it.

On another day, I don’t use my computer, which usually means I can make a simple dinner. But when I walk into the kitchen, I feel an intense desire to never cook again as long as I live.

Reply to an email? Order groceries? Read the news? Check Twitter? Put away clean laundry? Pay a bill? Do something big? Do something small? Nope. Nope. NOPE.

The physical limitations of ME can certainly contribute to hitting the Wall of Nope. But the Wall of Nope is really more of an emotional experience. Or a motivational experience, as in: I have none left.

That is what is new about this. I hit plenty of walls with ME, repeatedly and regularly. But the Wall of Nope is the point where I have lost all capacity for motivation. I’ve never experienced this before. I have always, throughout my life, been able to summon the will and motivation to keep going, to try again, to try differently. If someone needed me, I could dig deep and at least lend an ear. I wanted to be the kind of person who does that. I wanted to be the kind of person who has a tidy house, fulfills social obligations, and stays on top of paperwork.

Nope. Not anymore. Maybe it’s because I have so much to deal with now that I have reached the point where I can’t. And before anyone asks, I know it’s not depression because I have plenty of motivation to do things like practice cello or knit. I will gladly listen to the Elgar Cello Concerto for the eleventybillionth time. Or sit and drink a cup of coffee with enthusiasm until the cows come home.

But for everything else, there is just a point at which I can. not. deal. The errand that needs running? The food that needs cooking? The ringing phone? The advocacy project that needs analysis? Anything beyond the Wall of Nope is just too bad because I can no longer force myself to do the necessary or responsible thing.

Nope.

Nope.

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