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.
The Federal Partners report is a joke. Obviously the participants have never seen a blueprint, and have no idea that in the world outside of government bureaucracies, blueprints are actually extremely useful documents used to tell construction workers what a building should look like when finished.
The P2P “blueprint” is not fit for purpose – it is strictly a public relations exercise designed to lull patients and advocates into complacency. It will be put on a shelf to collect dust, along with all the other useless reports written over the past three decades.
Specifically, this document is vague, with no specific goals, timelines, or budgets. It does not assign specific responsibilities to specific agencies and departments. There is no provision for followup. It simply repeats the vague generalities of the P2P Report itself. Here is the Reader’s Digest version of the report:
“Somebody should do something, but we don’t know what, when, or who will do it.”
During the AIDS crisis, NIH did eventually figure out how how to support research, find useful treatments, and budget three billion dollars a year, every year, for multiple decades. But when it comes to ME, the NIH is mysteriously broke, incompetent, and ignorant, and very much intends to stay that way.
If Collins refuses to tender his resignation, he should be fired for gross incompetence.
Thanks for finding the energy to keep tabs on all this stuff.
As we head into an uncertain future, I feel 2016 was our last chance for a while – and we’ve lost it.
The people who didn’t do what they promised have successfully set back research for a long time. Again. Easy to promise when there’s no accountability.
If I had any usable brain cells left, I’d go study about energy production in cells and figure out why mine don’t produce any. They certainly have enough raw material (fat) to use to produce energy – and yet instead they make me hungry for stored energy I don’t need to accumulate. Which makes me even more pathetic to those who decide these things – fat people are despised in our society.
I may be catastrophizing – I’m willing to be wrong – but huge efforts were made by activists this year, and we’re still in limbo.
Hope I’m wrong, and just tired and sick.
Thanks so, so disappointing ME/CFS research is still being blocked. The science is on our side, what’s the problem?
The federal government, particularly NIH officials, don’t feel motivated to push on generating or funding ongoing or new research for ME/CFS. That’s kind of it in a nutshell.
The activism had been very good this year. But we are physically limited in what we can do, except for those who have gone to D.C. or participated in various protests, or done online or phone advocacy.
It’s going to take a lot more work on our part and that of doctors and researchers to get the government moving.
I hail all of the researchers who are investigating the causes and biomarkers for this disease, using their university’s labs and raising private funds. They’re all heroes in my book.
So, I”ll drag out my checkbook and write some checks when I figure out to whom to donate my meager sums.
“The United Nations needs to be nimble, efficient and effective. It must focus more on delivery and less on process; more on people and less on bureaucracy,” said Mr. Antonio Guterres after taking the General Secretary’s oath of office before the 193-member UN General Assembly.
Gee, you think that could apply at NIH as well? Anyone? Bueller?
Over and over, NIH apparatchiks praise their jury process, their pathways-to-perversion process, and what do we get? Bupkes.
“pathways-to-perversion process”
LOL. Thank you for this. It reminds me of that quaint-sounding legal phrase:
“Perverting the Course of Justice”
Will the 21st Century Cures Act change any of this bureaucracy and red tape, or will it be more of the same? Frankly I don’t see how a law can change how these government officials act to build their little kingdoms
I don’t think so.
I don’t think the laws will change. In fact, they may get worse, given the president-elect’s cabinet nominees and the direction the country is going in. People will be lucky if the Affordable Care Act, Medicare and Medicaid are preserved.
But I’d like to ask a question. With my modest means, I’d like to make a few
donations for research, but what are the best organizations or institutions to
donate to? I’d like to help with research that is effective.
Thanks.