No RFAs for anybody last week. But there was a very interesting Request for Information issued last week that may have implications for ME/CFS research.
The RFI requests information that might be useful in “the development of a comprehensive research program focused on the relationship of fatigue to health.” This research program will be funded through the NIH Common Fund, a trans-NIH program with $565 million in funding this year. The Common Fund is the home of major projects such as the Human Microbiome Project and the Big Data to Knowledge program.
The Common Fund would be a good home for ME/CFS research, since it is strategic, cross-Institute, and has a large budget. So what does it mean that the Common Fund is looking at fatigue and not ME/CFS? This seems to line up with Dr. Collins’s comments during his appearance on the Charlie Rose show on November 4, 2015. In answering a question about the NIH’s new effort on chronic fatigue syndrome, Collins said NIH will:
figure out what is going on in this condition. And if we understood that maybe we’d know what fatigue of other sorts is all about. Why do people in chemotherapy get fatigue? We don’t really know, wouldn’t it be nice to have that answer.
I asked Dr. Vicky Whittemore to comment on the relationship between this RFI (she is the primary contact) and ME/CFS. As of this writing, I have not heard back. UPDATE July 14, 2016: Dr. Vicky Whittemore (the primary contact on this new RFI) told me:
The proposed Common Fund program on fatigue is in the planning phases after being approved by the Council of Council. The initiative will need to be approved by NIH leadership (this fall) before it moves forward, so there are currently no funds or resources approved for this program. It is a separate effort but if it moves forward, we will hopefully learn a lot about the underlying mechanisms of fatigue that could be applicable to the study of ME/CFS and other diseases, as well as fatigue in the normal, healthy population.
ME/CFS advocates have spent years telling NIH that our disease is not fatigue. It strikes me as the height of crazy that NIH may have finally listened, and is therefore about to pour a substantial budget (via the Common Fund) into fatigue research and not ME/CFS.
UPDATE July 14, 2016: It would be the height of crazy if NIH decides to devote substantial resources to fatigue research, and not ME/CFS. If NIH is willing to pour money into fatigue but not into ME/CFS, if we continue to be left on the sidelines or the bottom of the barrel, then advocates will be fully justified in interpreting those decisions as evidence of prejudice against ME/CFS, its researchers, and its sufferers. I hope this will not be the case. I hope that ME/CFS will be recognized as a serious disease – not just the symptom of fatigue – deserving of substantial resources. If a fatigue program through the Common Fund is the way we get that, then that would be fine with me.
- Total RFAs Issued by NIH: 249 (October 2015 to date)
- Total Dollars Committed to RFAs: $2,129,686,000 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 7/4/16 | 0 | $0 | Zero |
| 6/27/16 | 3 | $12,971,000 | Zero |
| 6/20/16 | 1 | $2,000,000 | Zero |
| 6/13/16 | 5 | $21,475,000 | Zero |
| 6/6/16 | 5 | $7,100,000 | Zero |
| 5/30/16 | 4 | $6,900,000 | Zero |
| 5/23/16 | 8 | $42,400,000 | Zero |
| 5/16/16 | 2 | $7,800,000 | Zero |
| 5/9/16 | 11 | $32,100,000 | Zero |
| 5/2/16 | 8 | $32,485,000 | Zero |
| 4/25/16 | 4 | $7,500,000 | Zero |
| 4/18/16 | 10 | $42,230,000 | Zero |
| 4/18/16 | 10 | $42,230,000 | Zero |
| 4/11/16 | 4 | $6,825,000 | Zero |
| 4/4/16 | 8 | $27,000,000 | Zero |
| 3/28/16 | 13 | $161,000,000 | Zero |
| 3/21/16 | 1 | $2,700,000 | Zero |
| 3/14/16 | 5 | $23,650,000 | Zero |
| 3/7/16 | 9 | $82,710,000 | Zero |
| 2/29/16 | 1 | $1,890,000 | Zero |
| 2/22/16 | 9 | $30,100,000 | Zero |
| 2/15/16 | 4 | $26,500,000 | Zero |
| 2/8/16 | 5 | $9,500,000 | Zero |
| 2/1/16 | 8 | $26,000,000 | Zero |
| 1/25/16 | 4 | $9,300,000 | Zero |
| 1/18/16 | 2 | $4,500,000 | Zero |
| 1/11/16 | 10 | $71,200,000 | Zero |
| 1/4/16 | 0 | $0 | Zero |
| 12/28/15 | 0 | $0 | Zero |
| 12/21/15 | 3 | $10,260,000 | Zero |
| 12/18/15 | 5 | $20,260,000 | Zero |
| 12/11/15 | 27 | $765,090,000 | Zero |
| 12/4/15 | 6 | $26,600,000 | Zero |
| 11/27/15 | 4 | $21,000,000 | Zero |
| 11/20/15 | 15 | $134,400,000 | Zero |
| 11/13/15 | 2 | $16,100,000 | Zero |
| 11/6/15 | 10 | $22,850,000 | Zero |
| 10/30/15 | 7 | $49,800,000 | Zero |
| 10/23/15 | 10 | $33,200,000 | Zero |
| 10/16/15 | 0 | $0 | Zero |
| 10/9/15 | 13 | $332,450,000 | Zero |
If you want more background on the RFA Ticker, read the inaugural post.
“It strikes me as the height of crazy that NIH may have finally listened, and is therefore about to pour a substantial budget (via the Common Fund) into fatigue research and not ME/CFS.”
It is more bait-and-switch by Dr Frances “Lucy” Collins et al. NIH and CDC will never help us. When Collins commented that the UK psychobabblers “didn’t have the right skill set”, what he really meant is that the Wessely School is not competent to keep M.E. buried, but that he is.
Almost half a year after advocates stumbled over the seriously flawed Clinical Center study protocol, we are still waiting for the protocol to be published in the ClinicalTrials.gov database.
The previously issued trial ID NCT02669212 [1] still shows “Number Not Found”. The previously published Trail Participant Recruitment Notice [1] has not been re-published. Don’t be surprised if this ballyhooed study just slides down the memory hole to take up residence next to the ballyhooed CDC Multi-site Study (remember them?), the IOM report, the P2P report, 20 names and definitions for “CFS”, etc, etc.
[1] http://forums.phoenixrising.me/index.php?threads/nih-post-infectious-cfs-study.42873/page-24#post-700489
Jennie, smart thinking–your comments make a lot of sense in the context of recent NIH actions. One could suspect that the famous Strauss comment in his letter congratulating Fukuda on that definition still represents a strong strand in NIH thinking about our disease–just melt us down and make us a small part of the huge issue of fatigue.
Even if that is the thinking they should have given Ron Davis his grant–if they find that mitochondrial dysfunction really is at the root of ME, that discovery might open out and become useful to the broad field of fatigue. I do suspect that it may be counterproductive to emphasize too much the difference between fatigue and our PEM/PENE–that latter may prove to be our unique form of fatigue, not a totally different and separate phenomenon? But it is ours, and it still deserves –and needs–to be properly researched and finally understood. We shall have to wait and see if that will be part of this particular inquiry–and trust you to keep us all up-to-date on this.
For folks who want to read the Straus letter for themselves:
http://www.cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html
Thanks, jimells-and apologies for my spelling–I would like to spend more time with Richard and Johann Strauss than with S. Straus, and I guess I just goofed. My brain mitochondria were experiencing some PEM…
When you said that our disease is “not fatigue”, did you mean to say “not only fatigue”, or did you mean in the sense of “not the same as normal fatigue”? It sounds odd to me to just say that our disease is “not fatigue” when that’s one of the primary symptoms of it (along with so many others).
I mean that our disease is not only fatigue, and also not the same as normal fatigue. Since my husband’s stroke, he has become an interesting “control” subject for fatigue, and his fatigue is different from mine in many ways, even though we would both describe ourselves as having fatigue.
Thanks for the clarification!
When I went to my doctor after I collapsed in my office on 24 October 1994, I did NOT say “I am really really tired.” I did NOT say “I feel fatigued.” I said that I had blacked out and didn’t know why. I said that I couldn’t follow my own notes to be able to lecture to my students. I said that when I drove home, I had to bend my whole body to see if there was a car in the lane next to me because my neck hurt so bad, and then when I faced forward again, I couldn’t remember if there WAS a car there or not.
There were other things that I later learned were symptoms of the disease, just didn’t know it then, and didn’t mention it – that I had become totally alcohol intolerant, that I couldn’t sleep, that I couldn’t stand on a chair and change a ceiling lightbulb (my balance was really bad), that I dropped things, that I put things away where they didn’t belong.
In fact, remembering it, I had symptoms of mono (which I had more than once to that point, the last time being a major outbreak of EBV at the university where I taught) – but I didn’t have that awful desire to SLEEP all the time. To the contrary, I had trouble falling asleep. When I had mono, I would crawl into the SUV (while everybody was at a football game) and go back to sleep. With this, I just couldn’t DO anything.
My students diagnosed me (they had seen it before, because I think the 1990 EBV outbreak either disguised or started an outbreak of ME at the university) – and when I went back to my doctor and said, “My students say I have Chronic Fatigue Syndrome,” we both said almost at the same time, well THAT doesn’t sound right! I was WAY too sick.
So, no. I did NOT go to my doctor and say “I feel really tired.” FATIGUE is not the central symptom of this disease for me. Muscle failure, yes. Pain, yes. But mostly – my brain was broken.
Thanks for the response, Mary. I think it just goes to show how different we all are, and I suspect in time, some of us will come to be diagnosed with different diseases entirely, or if not, then we will come to realize just how differently the same disease can manifest. Many of your symptoms do not match with mine (though many also do).
I certainly don’t feel fatigued in the sense that I want to sleep, but a central feature of the disease for me is an unremitting lack of energy which, lacking any other term, I have to call “fatigue”. Other core symptoms for me are myalgia, the balance issues you talk about, heart palpitations, brain fog, and tinnitus. There are numerous frequent symptoms along with that, many occurring daily or weekly, like headaches, insomnia, and visual anomalies (among others), but only a couple of them were evident when I first came down with the disease; others became evident only later on.
When I first went to my doctor over a decade ago, the primary symptoms I remember discussing at the time were the myalgia (which can also be considered muscular “fatigue”), tinnitus, and balance issues.
On the flip side, I’ve never blacked out, my brain fog is maybe a bit less than yours, I’ve never had pain or stiffness apart from the myalgia and headaches, and I’ve never had significant coordination issues. (I should clarify, though, that I seem to be getting other muscle pain now, which may be some kind of atrophy, but that’s a relatively new thing in the grand scheme.)
So for me, yes, fatigue of one form or another has been there since the very beginning, and most people I’ve heard from talk about fatigue as being part of this illness, though by no means the only part of it, and often not even a primary symptom. That’s why I asked for clarification, because to say that fatigue is not a part of this at all, at least for me, would be ludicrous. I spend 23 hours a day sitting or lying down because I don’t have the energy (which I equate with being too fatigued) to do anything else.
Since, we have the most severe fatiguing disease we need to jump at this!!!!
It would be ideal if the $$$ was solely for ME/CFS, but seeing how we vary from other diseases has merit, as long as the measures are objective.
Did folks see this small piece in the July 12 New York Times science section, entitled “A Marker for Chronic Fatigue”? It cites Maureen Hanson at Cornell.
http://well.blogs.nytimes.com/2016/07/07/gut-bacteria-are-different-in-people-with-chronic-fatigue-syndrome/?_r=0
I find Robert’s account of his symptoms interesting, and have begun to suspect that there may well be a sex difference in the way this disease strikes, as well as an age difference (the Hornig study suggests this). There is a small study by Julia Newton and her great group suggesting that when ME strikes the aged, the primary symptoms are fatigue and OI–and that fits me (am now 83) perfectly. I have some cognitive and neurological issues too, but the main one is sheer lack of energy, which runs out alarmingly fast, and if I overstep–I am out with PEM. In my local group, I often find myself among middle aged women who can stand and chat while I have to find a chair, but who have more problems reading and thinking than I do. I hope this sex/age stuff will emerge from some of the big studies going on.
That *is* interesting, Chris. You certainly sound a lot more like I do than other descriptions I’ve read.
I have that symptom of not being able to stand for a long time. I’ll be talking to someone and have to find a chair after a short time, so I’m sitting and the person is standing, even someone older than I am.
And I can’t take buses because in my city it may mean standing or 15 to 20 minutes before a bus appears.
And, yes, I have what I call short stamina. And when I’m out of the house, I can crash suddenly. At a friend’s and she asks me to wrap up food before putting it away, I suddenly can’t do it, can’t do one more thing and have to leave immediately. Poor friends don’t get it.
Kathy – it sounds like you might have NMH or POTS (Neurally Mediated Hypotension and/or Postural Orthostatic Tachycardia Syndrome) – which correlates with ME and CFS. If you have a specialist for The Disease, ask him/her about it; if not, you may have to go to a cardiologist – but as happens with many of our comorbid conditions, they may not know much about it.
This is how Dr. Peter Rowe of Johns Hopkins describes it:
http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf