A short week due to the Thanksgiving holiday doesn’t slow NIH down, apparently. More than $40 million was committed to RFAs last week.
ME/CFS research didn’t even get the giblets. Will we be more successful in December?
Here are the current cumulative numbers:
| FY 2017 | FY 2016 | |
|---|---|---|
| RFAs Issued | 63 | 352 |
| Dollars Committed | $339,297,563 | $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 |
|---|---|---|---|
| 11/21/16 | 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.
If I didn’t need to thank you for your research and steadfastness, I’d stop following the depressing statistics.
I don’t know why, but 2016 – a year of promises without deliveries – has got me participating (if that’s what you call this) in getting my hopes up. And dashed.
When the medical community provides no answers, people turn to quacks. Or just do nothing. I’m surprised there aren’t more quacks. Or maybe I just tune them out because I don’t believe them.
Hi Jennie,
Thanks very much once again for keeping us informed! I hope December will bring good news. I recall December 9th was a date mentioned as important to watch regarding a NIH ME research funding announcement. Is this correct?
Thank you very much Alicia, for succinctly describing a very complicated, expensive, and terrifically unfortunate problem: “When the medical community provides no answers, people turn to quacks.” As a 31 year veteran of ME, I have seen one or two minimally “trained practitioners”, people would generally call quacks. They of course, provided no help, but were very interested in money.
On the other hand, it appears there are many well intentioned alternative health care practitioners with impressive CVs including mainstream college and university degrees. Many persons with ME turn to these much more educated alternative practitioners, expecting great improvement or recovery. We are reassured by their degrees, and confidence. Unfortunately, it appears that some, if not many of these more qualified health care practitioners can only provide minimal improvements at best; they cannot cure us. However, these people are definitely NOT quacks.
One would think these individuals with their diplomas, degrees, and assertion of knowledge and expertise, including their acknowledgement that ME (CFS) is a physical disease, can help us recover, or greatly improve. We are so relieved to have a qualified health care provider believe we have a physical illness, we may be blind to the fact they are not well versed in this disease. They may advise us they have helped others with “CFS” recover. But was it really ME these former patients had? Do these practitioners really understand ME? Do they know how to diagnose, and recognize authentic ME? Are they familiar with, and use the Canadian Consensus Criteria? Are they familiar with the complexity of this disease, and the main organ systems hit by this wretched illness? In my own experience, no.
These well educated alternative practitioners may not be well trained as regards the neuroimmune disease Myalgic Encephalomyelitis. Their understanding may be impeded by what hinders many mainstream health care providers, the misleading, trivializing term”chronic fatigue syndrome”; the over focus on “fatigue”. Often, alternative practitioners look for what’s under the label; what’s causing the illness. In this case, what’s causing the fatigue. Even though they profess to eschew disease labels, the term “CFS” seems to misdirect them toward simpler answers such as unidentified hypothyroidism, food allergies, adrenal fatigue etc. They offer herbal and homeopathic remedies based on their many years of training in what their profession views as causes of fatigue. Disdaining mainstream science, as mainstream practitioners disdain and dismiss them, they may not keep abreast of the evidence based research surrounding ME. They may be amazed to learn that ME is a complex neurological/immune/endocrine disease, not to be cured with their old stand by natural treatments.
We know mainstream medicine has caused millions with ME irreparable harm, and financial hardship. This, sadly, can also be the case with alternative health care providers, regardless of their level of qualifications, and well meaning intentions.
We need all qualified health care practitioners, both mainstream and alternative to learn much more about this terrible disease. We need persons with ME to do the same. Going forward, I hope that much increased knowledge on everyone’s part will help avoid the several past decades of costly mistakes, and outright harm done to many persons with ME.
Please see below an announcement of new catalyst grants for ME research in Canada. Let’s hope there are biomedical applications for this funding, and, that reviews are receptive to these applications. Jennie, thank you very much for this space to post our comments.
Dear Friends
New Catalyst Grant Competition
The Institute of Musculoskeletal Health and Arthritis (IMHA) of the Canadian Institutes of Health Research (CIHR) has announced that it has set aside $200k for ME/CFS research as part of a $1.2M catalyst grant competition. CIHR will be awarding one-year catalyst grants of up to $100k each.
This is an opportunity for existing ME/CFS researchers to expand their research and for other researchers to enter this very interesting area of study.
The purpose of the CIHR Catalyst Grant program is to provide seed money, on a short-term basis, to support health research activities which represent a first step towards the pursuit of more comprehensive funding opportunities. It is expected that the funds will enable researchers to generate preliminary data, validate methodology or tools, and/or explore novel research ideas in the designated areas.
The deadline for applications is January 10, 2016. The applications will then be reviewed to determine if they qualify for funding. If no ME/CFS projects are found to qualify, no projects will be funded. The anticipated announcement date is February 28, 2017 with funding to start in April.
Please share this information with anyone who might be interested!
National ME/FM Action Network
512, 33 Banner Road
Nepean, ON K2H 8V7 Canada
Thanks so much – always – Jennie, for keeping track of this.
Private and University funded small scale good research has begun but I’m afraid until the PACE trial ‘results’ are officially retracted by “the Lancet” (should such a day come) it continues to do damage, undermining research worldwide. I subscribe to http://www.storkapp.me and every day brings abstracts of new studies just published to my email. Many, especially those conducted in the UK and some of the Scandinavian countries, just feed more disinformation into the world. Today’s installments were: http://www.ncbi.nlm.nih.gov/pubmed/27894380 and (for those of us who also have a Fibromyalgia diagnosis): http://www.ncbi.nlm.nih.gov/pubmed/27898261 . These studies will continue to be funded and waste precious research dollars worldwide on debunked psychosomatic theories that promote more bias. Retraction by “the Lancet” seems somehow essential to our health and hope. The damage will take decades to counter. I don’t know what Tom Price is planning for HHS but am less hopeful than before I read about him. Am trying not to lose hope altogether. Each step forward is treasured – but lately the two steps back that follow feel like they’re moving to three. I may need to cancel my stork subscription if I’m to weather the coming era. The world looks to the US for direction. So far we’re not leading this fight.
Well, Congress just granted more funds to the NIH; much is for development of medications and devices, but the safety requirements are looser. Who knows if this will help us or the pharmaceutical industry?
Tom Price is a concern; he wants to overturn the Affordable Care Act. I don’t think there is any good intention here.
I worry for Medicare, as Paul Ryan and his cronies want to weaken it.
Anyway, I have a health question and turn to this blog to ask it, as there is so much experience here.
I’ve had two episodes in the last few weeks where I was at Whole Foods and then my local pharmacy where suddenly I felt like I’d fall down and had to rush home. I made it; they’re pretty close.
Then Thursday night I was a few blocks from home, but could not stand up for even a short time, had to sit or where there wasn’t a chair, had to lean against a table or counter. I felt like I was too weak to stand. Also, my legs hurt; the knees hurt, the muscles above the knees hurt and the bones beneath the knees hurt. I’ve also been having trouble as my knees lock, sometimes my legs are stiff or near the ankles get numb.
I don’t know what is going on, if it’s ME/CFS or what. If it’s just exhaustion or if I have another virus.
I don’t want to be totally homebound. I can’t be.