I have no words this week, friends. I’m tracking the numbers because that is all I can do.
One announcement: The NIH Clinical Care Center study of post-infectious ME/CFS is now recruiting participants. You can see the flyer here, and read more about the study on the website.
Here are the current cumulative RFA numbers:
| FY 2017 | FY 2016 | |
|---|---|---|
| RFAs Issued | 128 | 352 |
| Dollars Committed | $750,557,563 | $2,840,680,617 |
| RFAs for ME/CFS | TWO | ZERO |
And here is the table for FY 2017 alone:
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 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.
Jennie do you know why there’s an age limit of 60 for the study? Seems a shame to exclude anyone who fits perfectly other than being a year or so older.
That’s a great question, and I do not know the answer. I suggest calling or emailing the study team. Contact information was on the flyer that I linked to.
It’s funny reading the poster soliciting patients for the study. It repeatedly talks about doing up to 8 hours of testing per day on study subjects. They might as well have said “subjects must be healthy enough to work a part time job”. I am sure the NIH will figure all this out. NOT!
I’m very concerned about the fact they did not involve patients in developing the protocol, for a number of reasons. The one saving grace is that the 8 hour days are done while in-patient at the NIH hospital. They will discover pretty quickly what those kinds of days do to patients.
I had the same concern about the 8-hr. days and the obvious cluelessness of the study designers regarding the (non)health of the ME patients. This in itself will bias the study results by causing many to self-select out of doing it. Being in the hospital for a few days won’t help a bit, as most hospitals have no idea what to do for these patients, plus it opens people up to hospital infections. Being there will in no way alleviate the effects of all the mental and physical effort that has to go into those 8-hr. days.
Correct me if I’m wrong, but I think Dr. Nath has no clinical experience with ME patients, and Dr. Wallit probably still thinks it’s really most psychological. Lead investigators generally are experts in what they are studying, but this is not the case here. So looking down the road (five years till this is done is my estimate), the result might well be a very skewed sample and thus some invalid outcomes and conclusions. More money badly spent, simply because these govt. people are too stubborn and insulated to involve the community and expert physicians in the study design.
In addition, does the study design plan on the patients’ getting any at-home support after their time in the hospital is done? I seem to remember that this was not planned but am not sure.
I am interested in hearing from patients (I am not one) on this. Will you sign up? Or would you sign up if you lived near DC?
I would sign up in a heart beat if I had been sick less than five years. I share your concern, especially about the lack of ME experience on the in-house team. And I would be terrified about how I would survive those days of testing. But I feel so strongly about the need for this kind of deep dive on ME patients that I would risk it. Each person has to make their own judgment though.
Hi Jennie,
I hope the physicians at the NIH hospital will pay attention to how their CFS test subjects do when asked to undergo a grueling testing regimen. Unfortunately some of the doctors may well blame the patients for being noncompliant people with a psychogenic condition instead of accepting the reality before their eyes and/or their patients explanations. It has happened before and such theories are more in keeping with the current belief systems of modern medicine.
Agreed!
Feel better, Jennie! Thanks for all you do!
Thanks, Jennie for the info and all that you do. Hope you feel better.
I also am too old for the trial.
I am looking for treatment. I have contacted Columbia University, but I think they only do research. I will contact Dr. Montoya, Stanford Univ, but it takes at least 6 mos to get an appt. Does anyone know of reputable treatment or someone who uses Dr. Montoya’s protocol?
Regarding concerns about how patients will do during the NIH testing: I’ve been talking to the NIH investigators about joining the study. Dr. Walitt wanted to know how long it might take me to recover from traveling (I said three days), and he said the testing would wait until I had stabilized after a (long, for me) trip to Bethesda. He also spent a lot of time describing the testing that would be done and repeatedly asked me if I was comfortable with all of it. He also said there’s a quite a bit of flexibility and that there is no rigid 9-to-5 schedule of testing to be done. The protocol involves two trips to NIH. The second trip, some months after the first, will include physical exercise (stationary bike) and mental exercise (math problems) designed to elicit PEM. So yes, patients signing up for the study are signing up to PEM themselves. The only way NIH can study PEM is if they can see it.
This is reassuring to hear, Brian. I’m glad they are offering travel recovery time and flexibility around the testing schedule. I also agree that the only way to study PEM is to provoke it. Thanks for sharing this information!
Brian, thank you for this. I am glad to hear the NIH is going to be sensitive to the needs of the ME patients.