The big news (apart from the election, of course) is that Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative had a brief meeting with Dr. Francis Collins, Director of NIH. SMCI reported:
Dr. Collins could not offer insight as to the future of his position at the NIH but agreed that the vital progress ME/CFS has made thus far must be protected and bolstered. Dr. Collins acknowledged the past disservice and delay in regard to ME/CFS and committed to continue to support progress moving forward.
And that is the big question. Will Dr. Collins continue as Director? This would certainly be to our advantage since he has promised to support ME research. Or will a new Director come in, along with the new administration? That would mean we go back to square -1, having to build our case and convince a new (possibly less receptive) audience.
In a time of great uncertainty, we must press forward. We cannot lose a single minute or waste a single opportunity. After all, HIV/AIDS activists succeeded in transforming the landscape of federal policy and funding on that disease during the Reagan administration. President Reagan was seven years in to his term of office when he finally gave a speech on AIDS. If the HIV/AIDS activists were able to change the political calculus on that crisis, then surely we can continue to make progress in this one.
Here are the current cumulative numbers:
| FY 2017 | FY 2016 | |
|---|---|---|
| RFAs Issued | 57 | 352 |
| Dollars Committed | $296,517,563 | $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 |
|---|---|---|---|
| 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.
Alicia Butcher Ehrhardt said you could use some encouragement. I know from what she has said about ME/CFS that simply having a blog can be a struggle. Kudos for running one that gives such clear insights.
Hey, thanks, Alice.
Jennie has kept this up for an amazing amount of time already.
Jennie, thank you for continuing this daunting task and for keeping us informed. Your work and blog is working in ways that may not be obvious, but are crucially important. It takes a village, and you are certainly doing your part. Thank you!!
Shouldn’t we be figuring out who to approach/write to encourage the retirement or promotion to Outer Mongolia tick research of the person who has done most to harm and hold back MECFS research? Perhaps springing into action early might pay dividends. One can also promote those one admires, whomever.
It is really hard not to get discouraged when ‘the establishment’ seems to keep kicking you in the teeth, isn’t it?
All we want is research to get us well so WE CAN GO BACK TO WORK, those of us still young enough to.
27 years of desperately wanting to go back to work with the PhD paid for from DoE funds at the U. of Wisconsin-Madison (I provided the work, then got a chance to work with that knowledge at two world class labs, The Johns Hopkins U. Applied Physics Lab and the Princeton U. Plasma Physics Lab before being felled by a disease no one has helped me with) – with no results.
Every one of us just wants to thank the government for its research and help getting back to a higher state of health, and do something productive with the rest of our lives.
Or at least to have the new victims make that transition, if the damage to us is too great to be fixed – after all this time of being ignored.
Say that the state of medical research wasn’t advanced enough to help before (not that they tried very hard); it can still go better in the future – but only if it gets a different attitude.
It’s easier to ignore us. Somehow. I still don’t get that. We’re citizens, we pay taxes (or did, when we were earning anything), but we’re somehow not worth it.
It gets very discouraging, especially when ‘they’ let us down so severely as with the PACE trial, when they do anything at all.
I have to keep reminding me there are people alive today, going about their lives and their business, who have HIV/AIDS. It would have been a better disease to contract.
I think Jennie for keeping us uptodate and also for the advocacy work.
We don’t know what will happen with the new “administration.” I fear for all funding for medical research. Budgets may be slashed.
It’ll take a lot of protests to get the funding, I’m afraid.
But the scientific research goes on at Stanford, Columbia, Cornell, Harvard, UC San Diego and a lot of other facilities, thanks to the dedication of many scientists and doctors. Not to mention those in Norway, Australia, Japan and elsewhere.
I wrote a brief letter to President Elect Trump explaining our plight and asked him to please keep Dr.Collins in his position at the NIH. Mr. Trump can be sent emails through his transition website named greatagain.gov under Share your Ideas.