Did we get an RFA last week from NIH?
NOPE.
But DON’T WORRY. The NIH just awarded Dr. Fred Friedberg a four-year $1.5 million grant to study the hypothesis that push-crash cycles, daily hassles, and negative life events are associated with non-improvement and inactivity in ME/CFS patients. The long range goal? “[A] new self-management protocol that more clearly identifies non-improvement activities and how they can be changed.”
We’re doing FINE.
- Total RFAs Issued by NIH: 246 (October 2015 to date)
- Total Dollars Committed to RFAs: $2,114,716,000 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 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.
I’d be articulate but I think this should suffice.
!??!??!?!?!???
I can’t believe you didn’t use obscenities! (or perhaps you are nicer than me and don’t use them at all!)
There is a nice and well-aimed sting to this little piece–I hope NIH appreciate it. But I fear that they will just keep rolling along as usual…
While we CONTINUE to wait for RFA news, I have a few questions about the study you mention.
Why does the PI hypothesize that positive events will be related to improvement? Something like winning the lottery would likely be considered a positive event and might raise one’s heart rate significantly and that can trigger a crash/collapse.
I know several patients for whom positive events are just as symptom triggering as negative events.
Also – how are they connecting activity and crashes/collapses? Are they taking delayed onset PEM into account or just immediate onset?
How many people will be in this study?
Does this study use healthy controls?
Is there a control group of people with orthostatic intolerance, POTS, etc but who do NOT have ME?
Is there a control group with coronary heart disease (or other disease with low heart rate variability)?
Will participants be allowed to take beta-blockers (and/or other medications that impact heart rate variability during the study)?
Why this study?
All we have to go on is the project description posted on the NIH website (linked above), so questions will have to be addressed directly to Dr. Friedberg. Based on the posted abstract, there will be no control group. There’s no information to answer your other questions.
I wasn’t trying to put you on the spot with my questions.
It just would be nice if more information about this study was available because I am having trouble seeing the value of it.
But, but, but – it says CFS in his proposal – it must be good, right?
Be prepared now for the money assigned and then wasted on stupidities, the answer to which is yes. There: I’ve saved you 1.5 million.
Is this really how science is done?
Nothing has changed. It’s all happy talk that we are getting from all the HHS departments. We are NOT making progress. I will withhold all my obscenities on this grant. Too many. The NIH has no idea who in the field is competent and who is not.
I believe they know. I also believe they are funding junk to keep us on the outskirts of actual care.
Actually, they know *exactly* who is competent, which is why they are still not funding Ron Davis.
In spite of all the happy talk from NIH, they are *still* protecting the disability insurers. Until we know exactly who at NIH is controlling the policy of non-research, and those people are exposed, the policy will not substantially change.
A recent FDA commissioner has been exposed, and is in big trouble for corruption related to a cover-up of severe adverse events related to Levaquin. [1] When will an enterprising lawyer and/or investigative journalist take on the burial of M.E.?
[1] http://forums.phoenixrising.me/index.php?threads/former-fda-commissioner-charged-under-rico-law-for-levaquin-cover-up.45386/
Well, here’s another 1.5M spent on junk science! Hats off to the NIH for yet another waste of money to make it look like it’s “all in our heads” instead of actually helping those who are sick….!#=/+;6+’!
Really?
Why do I even ask that anymore… You can’t make this stuff up.
FFS
Dafuq, NIH???
This. This is the best comment.
I love this statement in the “hypothesis” link: “the patient’s self-management efforts may (paradoxically) produce symptom worsening and contribute to illness non-improvement.”
Really? And on what is that theory based? The remainder of his hypotheses would also be blown out of the water if he talked to any significant number of ME/CFS patients. Yes, sure, many people do get push/crash cycles, but many of us don’t. Many of us avoid them, and negative life-events, and all the rest of it…and we’re still sick. We’re sick all the time—short of the rare times we crash, we don’t get this “relapse” effect psychiatrists love to talk about, as if we were perfectly fine the rest of the time.
I’m not fine, Dr. Friedberg, not in my best minute of my best day!
I’m sick, and I need people to study what’s making me sick!
YES! Thanks, Robert, for the totally idiotic quote from the project. My opinion is formed. POS soft science. We need real immunological, metabolomic, genetic, solid science! This is B.S.! I want my health back. I pushed myself through 4/5ths of a bachelor’s degree after I was bed and housebound for 2 yrs sick as a teenager but then had a 80-90% recovery. I’m now sick again (total relapse/re-onset), obviously this is more fun–NOT. Thanks Jennie for your work. Eventually, we WILL see RFAs!
Clearly, the NIH review process for “ME/cfs” grant proposals, in this case most probably the Special Emphasis Panel (SEP), has not changed one iota. Who was on the SEP that approved this? What kind of background did the reviewers have? What kind of biases? Why is nothing being done about this problem, which has been highlighted countless times over the past 20 or so years?
I don’t know which SEP meeting scored this grant high enough to proceed on for Council review, so I don’t know who reviewed this particular grant. Generally speaking, however, recent CFS SEPs have been comprised mainly of people who would count as ME/CFS experts.
Exactly. If this what “ME/cfs” experts consider worth funding, we are in truly in dire straits.
Friedberg has a long history of publishing junk fatigue studies, and no M.E. studies. Outwardly he may appear to be sympathetic towards patients, but a quick read of some of his research reveals he is firmly in the psychobabble camp.
“Although the favorable outcomes for CBT and GET in primary care (6, 7) were expected” [1] is straight out of the Wessely School and their fraudulent research.
No one will be surprised that “this study found that the impact of fatigue on functioning in UCF [Unexplained Chronic Fatigue] and CFS can be effectively treated for a notable proportion of these patients in a primary care setting” since that is what every psychobabble study claims.
The study does admit “the lack of improvement in physical functioning is a potential limitation”, but let’s not worry our pretty little heads over such an obvious treatment failure, since psychotherapy doesn’t work either, as the authors readily acknowledge:
“this finding is consistent with the absence of significant improvements in physical function reported in a review of randomized CBT trials in CFS”
(bangs head on wall a few times)
[1] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3785003
Not only are Friedberg’s studies “junk”, I found the advice in his book “Fibromyalgia & Chronic Fatigue Syndrome – 7 Proven Steps to Less Pain and More Energy” pretty much useless for those of us with ME, as opposed to those who are fatigued and in pain for other reasons.
I agree with everyone, especially the expletives. It’s still amazing, after the IOM met and released their report, which is ignored by the NIH powers that be.
They really don’t want to recognize this disease needs research and treatment, not psychobabble and phony studies. It’s disability insurance, Socialist Security disability, private health insurers, Medicare, Medicaid, all of it. The powers that be don’t want to add to the payouts that would have to be made.
And, yes, fund Ron Davis and other scientists doing real research.
Fred Friedberg is the “President & Fund Raising Committee Chair” over at the IACFS. So basically the NIH gets to give us the finger while appeasing the president of our international research association. Sometimes I think there are people working in the US government that take perverse pleasure in tormenting our community with actions like this. Sometimes the scariest statement is “I am from the government and I am here to help.” What’s next – will the NIH invite some of the British psychobabler researchers over to run their in house CFS research efforts?
Am I missing something, or does this sound like pacing to prevent relapse. How is this going to provide any new information to develop a treatment? This reminds me of a comment made at a CFISAC meeting: ‘we are doing a 1 day exercise test because we don’t think people will come back on day two’ ?? If the NIH keeps wasting research money on things like this we better get comfortable in our Hobbit Holes because we are going to be here a long time. WTF