And then there were three.
Almost two years after Dr. Collins announced that the NIH would reinvigorate ME/CFS, the NIH has finally provided funding for three research centers and one data center.
Earlier this year the ME/CFS research community surprised by submitting no less than 10 applications, including one from a research group new to the field.
- The Center for Enervating Neuroimmune Disease (Cornell) – Maureen Hanson
- The Center for Infection and Immunity – Ian Lipkin
- The Genome Technology Center at Stanford – Ron Davis + Bob Naviaux
- The Institute For Neuroimmune Medicine – Nancy Klimas
- Lenny Jason at DePaul University – Lenny Jason
- The Nevada Center for Biomedical Research – Vincent Lombardi
- Pain and Fatigue Study Center – Dane Cook
- Stanford Chronic Fatigue Initiative – Jose Montoya
- The Jackson Laboratory (Connecticut) – Derya Unutmaz
- Beth Isreal Deaconness Medical Center – Associated with Harvard Medical School – Dr. Janet Mullington
That number guaranteed that the competition was going to be stiff – and that some perfectly good projects were going to get stiffed. Of course, there was probably going to be controversy. The NIH seemingly can’t sneeze around ME/CFS without creating something controversial. Even its good stuff creates controversy. From the IOM report to the extramural study and now to the research centers, something controversial always seems to show up. I think that’s partially the result of an unusually active and informed disease community.
The Winners
As Vickie Whittemore explained in a Solve ME/CFS Initiative article, each grant was scored for five factors (significance, investigators, innovation, approach and environment) by at least three reviewers. The final review was done by Institute and Center National Advisory Councils or Boards composed of both scientific and public representatives.
The applications included research groups relatively new to the field (Lipkin, Hanson, Davis, Unutmaz, Mullington) and research groups that have been associated with ME/CFS for longer (Klimas, Jason, Natelson, Montoya, Lombardi).
The three winners, all on the eastern side of the U.S.: Dr. Ian Lipkin of Columbia, Maureen Hanson of Cornell and Derya Unutmaz are all relatively new to the field. They have a few things in common: they all entered the field in the last five years or so, and most are associated with top labs employing cutting-edge technology. They’re all taking a deep look at the immune system, and, this wouldn’t have been true even a couple of years ago, two will be studying the metabolism and metabolomics and/or the microbiome.
Ian Lipkin – Pathogens, Immune Disruption and Metabolism
Ian Lipkin, of course, is internationally known for his pathogen work, runs an enormous and well-respected lab, regularly creates new technologies, and has been a passionate advocate for ME/CFS. He was widely expected to be a front-runner, and it was no surprise that he won out.
Lipkin will finally be able to dig into the hundreds of ME/CFS samples he and Mady Hornig collected which have been lying fallow in his lab for a year or so. They’ll do a complete array of pathogen and immune testing to try and figure out how a simple infection turned so devastating in so many people with ME/CFS. Lipkin will also explore gene expression and metabolic changes before and after exercise. More on Lipkin and his work in an upcoming blog.
Maureen Hanson – The Exercise Center
From the Cornell Chronicle – http://news.cornell.edu/stories/2017/09/94m-nih-grant-funds-chronic-fatigue-syndrome-center
Coming from a plant biology background, Maureen Hanson entered the field with a bang, scoring one of the few XMRV grants and then moving on to win several other grant awards. A nimble researcher, since 2012 Hanson has published no less than six studies covering a wide variety of factors in ME/CFS including the gut, mitochondrial DNA, exercise and metabolomics. Hanson, who has a son with ME/CFS, has shown the ability to knock her studies out in timely fashion – a rather rare commodity in ME/CFS – and something that is greatly appreciated.
Hanson’s personal experience with the disease has undoubtedly informed every aspect of her involvement with it:
“Being awarded an NIH ME/CFS Center means we have taken on a huge responsibility to the more than one million people affected by this life-limiting disease that has no FDA-approved drugs and a poor prognosis for recovery.”
In what may be a record for involvement, Hanson is on the Scientific Advisory Boards of the Simmaron Research Foundation, the Open Medicine Foundation and The Solve ME/CFS Initiative (SMCI). A vocal advocate, Hanson is well-respected by all, and is clearly an excellent choice.
The Cornell Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Collaborative Research Center
The new Cornell Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Collaborative Research Center will include researchers and doctors from the Weill Cornell Medical College, Ithaca College, the Boyce Thompson Institute, the Workwell Foundation, EVMED Research, the SOLVE ME/CFS Initiative and private ME/CFS medical practices.
The Disrupter
“The ultimate goal of all this is to find the fundamental disruptions, so that we can discover treatments to mitigate those disruptions and restore people to health,” Hanson
Hanson will be highlighting the “disruption” occurring in ME/CFS by featuring the most effective disrupter possible – exercise – to bring out the most telling problems in ME/CFS patients’ systems. Closely affiliated with ME/CFS exercise physiologists (Betsy Keller, Workwell) Hanson’s is the only center to so completely integrate stress produced by exercise into all aspects of her studies.
Hanson’s will also be the only center to examine the brain. Using MRI and PET scans, she and Dr. Shungu will look for markers of neuroinflammation and oxidative stress in the brains of ME/CFS patients and healthy controls. Finding out what happens after exercise to the reduced antioxidant and increased lactate levels in the brains of ME/CFS patients Shungu has found thus far will be fascinating.
Hanson will bring something absolutely new to the field with a project on “extracellular vesicles”: free-floating membrane-surrounded blobs containing proteins, lipids, hormones and RNA’s. These “cargo carriers” release their products into cells when they fuse with them, and appear to play a role in many functions including how the immune system (including B-cells) react to pathogens. Hanson believes exercise may be causing these vesicles to release inflammatory factors that contribute to the PEM in ME/CFS. Since extracellular vesicles are new to ME/CFS research, my guess is that she’s gathered some nice pilot data on them.
Hanson’s third project will sequence the RNA in individual white blood cells before and after exercise. Since RNAs are the messengers the cell uses to produce proteins, this third leg will examine how exercise alters the activity of immune cells.
Derya Unutmaz – The Integrater
Derya Unutmaz is the dark-horse candidate here. With no ME/CFS publications under his belt, and the latest arrival to the field, Unutmaz clearly had his work cut out for him. Unutmaz, though, is affilated with a top lab, and presumably has some hot pilot data that helped him win out.
After getting turned onto ME/CFS by Suzanne Vernon (then at the SMCI) around 2014, Unutmaz, an immunologist and T-cell specialist, became intrigued by what he was seeing in his lab. Whatever he found was intriguing enough to score him a rare NIH ME/CFS grant.
Suzanne Vernon was overjoyed at Unumatz’ success
I’ve had to pinch myself ever since Dr Unutmaz became intrigued with ME/CFS and integrated ME/CFS immune profiling into his large immunology research program. For the longest time we (the ME/CFS research and patient community) have said we should and could learn from other immune dysfunction diseases. Now we have one of the world’s top immunologist who has researched and published extensively on HIV, chronic diseases and aging working to decipher ME/CFS. Unutmaz embraces the biological complexity and this is one of the reasons it was easy for him to say “yes” to ME/CFS research and take a comprehensive system biology approach in his funded CRC.
Check out the SMCI webinar Unutmaz gave to the ME/CFS community on his work in 2014
Unutmaz has said he’s been particularly intrigued by two things in ME/CFS – the immune data he’s been seeing and b) the possibility of making a huge difference in an under-researched field.
Taking samples at different time points during the year, Unutmaz’s Center will employ a longitudinal approach to ME/CFS that will look at how three systems interact with each other to produce ME/CFS.
- Immune system – using his state of the art flow cytometer, Unutmaz will determine which parts of ME/CFS patients’ immune systems are perturbed.
- Gut – given the microbiome’s enormous impact on the immune system (Unutmaz referred to thousands of gut species impacting it) Unutmaz will attempt to determine what microbiome problems are present and if they are throwing the immune system off.
- Metabolism – everybody it seems is into metabolomics now, and so is Unutmaz.
Unutmaz will use computational and statistical techniques to determine how these different systems impact each other. Could a problem producing energy, for instance, effect how the immune system is functioning? Are gut issues causing immune problems? Could low energy production be associated with poor immune regulation; i.e. an ongoing autoimmune process?
Ultimately, Unutmaz, who’s finding ME/CFS patients to be quite heterogeneous, will attempt to uncover biological signatures which stratify patients and produce new hypotheses to test. Unutmaz has been tweeting up a storm since the announcement. Check out his tweets here.
The Missing Centers
It was clear from the get-go that some good proposals were not going to get funded. I was surprised, for instance, that Nancy Klimas, given her long research history and the big team she’s built at Nova Southeastern, was not funded.
That said, the exclusion of Ron Davis was the other big story. Davis was clearly the patient community’s favorite. A 13-page thread on the Research Centers on Phoenix Rising was dominated not by expressions of glee that the Research Centers were finally underway, but more by dismay that Davis’ Center was not selected.
On the face of it Davis’ rejection is hard to understand. Davis has lead major projects before. He’s the biggest name in the field, and has extensive connections, and his application showed that. Mark Davis, Stanford immunologist, Mike Snyder, the Chair of what’s considered the best genetics department in the world, Craig Heller, William Robinson (immunologist/rheumatologist) 12 publications thus far this year, Lars Steinmetz (genomics technology pioneer), Bob Naviaux, Lucinda Bateman and Sue Levine and many others certainly made Davis’ application top-heavy with big names.
Davis’s application didn’t make it though. Janet Dafoe, Ron Davis’s wife, took the unusual step of publicly reporting some of the reviewers concerns about the Davis grant on Phoenix Rising. She did this because
He (Ron Davis) thinks it’s important for people to know that because his grants have been rejected it doesn’t mean it’s bad science, because if people think that then the private donations will be negatively affected. He has to rely on private donations. We need them. It’s good science. It was an excellent grant.
Lack of Publications – She noted that Davis’ application was marked down for his having no ME/CFS publications and for not having ME/CFS experts on it. There was no escaping the publication issue for Davis. He has not published and so was destined to score low on this criteria.
The publication criteria does seem to be of diminishing importance at this point, however. The NIH’s main goal – to invigorate the field and bring in new researchers who will apply for and be successful at getting grants – is at odds with a criteria that supports those already in the field. Davis doesn’t have publications yet, but his research center would have brought in a stable of top researchers new to the field – the NIH’s key goal.
No ME/CFS Experts? Davis’ main team is not filled with ME/CFS experts, but Dr. Bateman, Dr. Levine and Bob Naviuax have all published on ME/CFS, and Davis himself spent a year going over thousands of studies for the Institute of Medicine project. Being appointed to an august body such as the Institute of Medicine to prepare a report on ME/CFS surely qualifies Davis as an ME/CFS expert.
Mediocre Institution (???) – In what must have been a jaw-dropping moment for Davis and for Stanford itself, the institutional environment for Davis’ grant – one of five major factors in Davis’ score – was rated “mediocre”. Stanford, of course, has one of the top medical schools in the world. Dafoe reported that the Stanford grant review office stated they have never seen in their entire history anywhere near that low of a score. This score is a big red flag that something went very wrong with this review.
Conflicts of Interest? – In another jaw-dropper, the reviews also suggested that Davis’ work with a non-profit (the Open Medicine Foundation) was a conflict of interest, despite the fact that each applicant was required to work with a non-governmental organization (NGO) and that the NIH lauds its private-public partnerships.
Having his wife, Janet Dafoe, on the community outreach portion of the grant was considered a negative. Janet also had a conflict of interest because her son has ME/CFS (Maureen Hanson’s son has ME/CFS as well).
Science
Nano-needle – Davis’ application had at least one significant hurdle in the science area to overcome. A portion of the grant was dedicated to improving and validating the work of the nano-needle – a new instrument with vast possibilities – but whose fate, because it is still under development, is uncertain. Davis, of course, has been very effective at creating biological technologies. His lab has birthed dozens of companies. One might have thought that if, after decades producing breakthrough technologies, Davis thinks the nano-needle has a good shot, that might mean something. It turned out that it didn’t.
Instead a reviewer cited the fact that nano-needle wasn’t “government-certified” for medical use in patients as a problem. Since the goal of the project was to develop the nano-needle so that it could be used in patients, that criteria automatically eliminated it from consideration.
Unproven Technology – The project to produce induced pluripotent stem cells (iPS) was rejected because it used unproven technology – yet Janet Dafoe noted that the ME/CFS Intramural Study run by the NIH is using that very technology.
Some of the reviewers’ considerations regarding the Davis application seem petty and just plain wrong. While Davis has been the most public with his dismay, he wasn’t the only one shocked at his poor score. Reports from people associated with five of the applications, none of which made the cut, suggested that other groups were surprised at how poorly they scored.Two groups wondered, if their scores were so poor, if anybody was going to make the cut.
We’ll probably never know what happened, but here are two suggestions: unprepared reviewers and sour grapes.
Not the Best Reviewers: It’s possible that some of the reviewers were not up to the task. Reviewing an ME/CFS research center grant proposal is not exactly a job that most researchers probably jump at.
Sour Grapes: Through their outreach, Davis and the OMF have won the hearts and minds of much of the ME/CFS community, and they’ve been effective fundraisers to boot. It’s inevitable that some backlash has occurred. Davis has been honest from the beginning that his goal has not been to produce papers, but his lack of publications really grates some in the community.
Some of the reviewer comments – perhaps from ME/CFS reviewers (?) – suggest some hostility at OMF’s success could be present. (I have not seen and don’t have any knowledge of the reviews other than what I’ve read. This is pure conjecture.)
On the other hand, it must be noted that the reviewers did pick three excellent research centers. Whatever happened with Davis and other groups, the research center review was largely a success.
Could it have turned out better? I would have loved to see the NIH go out on a limb a little and given Ron Davis the opportunity his career suggests he should have in this field. Davis’ project is the most risky, but if successful, it appears to have the ability to move the field forward very quickly. The nano-needle could potentially provide a diagnostic test, help determine factors in the blood that are hurting people with ME/CFS, and even become a drug-screening tool.
Also lost was funding for Bob Naviaux, Mark Davis’ intriguing new immune findings, and Mike Snyder’s stem cell work. For me, it’s a lost opportunity.
Overall A Big Win for the ME/CFS Community
The research centers aren’t perfect. Several researchers believed the heavy reporting burden and the need to provide for extramural funding was going to hamper their performance. One researcher decided to go apply for single grants instead of a center because of those factors. While the research centers may be a little “skinny”, they still constitute a major infusion of funding for chronic fatigue syndrome over five years – @ $35 million.
While many dearly wanted Ron Davis’ application to win out, the NIH’s research center grant was a success overall. Ian Lipkin will finally get the funding (or at least some of it 🙂 needed to get his long-hoped for big ME/CFS projects going; Maureen Hanson ‘s “exercise center” will be determining how exercise effects the brain, the immune system, and gene expression, and Derya Unutmaz is going to use his big lab to see if he can figure out how immune, gut and metabolism problems fit together to produce ME/CFS. These efforts should produce some nice big, well-formed studies, the results from which no one can argue with.
After years of pitifully low individual grant applications, they should trend up next year.
Plus, there’s a silver lining. The biggest problem at the NIH has been the lack of ME/CFS grant applications. The NIH, after all, can’t fund grants it doesn’t get applications for, and Koroshetz has warned that diseases cannot rely on research centers. Most NIH funding is in the form of individual grants. The ME/CFS research community met the “research center challenge” with its ten applications. Now it needs to meet the “individual research grant challenge”; i.e. ME/CFS researchers need to start applying for individual research grants in volume.
The Research Center application has already begun to resolve the low individual research grant application problem. In fact, that problem should basically disappear for the next year. The seven groups that didn’t win out should have from 15-20 individual grant applications ready or nearly ready to present.
The next grant review, which begins in October, will hopefully be one of the biggest in the history of this disease. Ron Davis, Nancy Klimas and Vince Lombardi have all said they will be submitting grant applications. By next year we could/should have five or more big studies adding perhaps $7-10 million or more in grants to the funding pie. We should at least expect the Research Center process to lead to a significant uptick in extramural funding next year.
Very helful summary of the research situation. Reassuring to know that at least there’s research going on.
“The projects are not about hypothesis testing”
I was under the impression that the NIH wouldn’t fund researchers without a hypothesis?
Well, on second thought, I think there are some hypotheses here (I removed that sentence) such as that exercise produces neuroinflammation, inflammation, gene expression changes, etc. . Or that pathogen triggers effect immune functioning or that gut issues cause inflammation but I think in the broad sense most of these studies are gathering immense amounts of data and seeing what falls out. Once that happens hopefully we’ll see some more specific hypotheses such as this factor causes this to happen which causes this symptom.
ooh i am getting so excited that they are spending 7 million this year. if you take the 5 million they were spending 24 years ago, is this amount something to get so excited about, and why the heck did they close down highly productive centres like dr natelsons multidisciplinary team some years ago?
i have no confidence in the nih. and it was a lot of blood sweat and tears on the part of activists, that contributed towards getting this result. several highly prominent ME/CFS researchers have confided in me, how impossible it is to get grants to study aspects of this illness and as a consequence they are having to focus less on this illness and move into other areas where grants are more plentiful. the nih say they get few grant applications, but its because of the lousy nih that keep turning them down until they give up
The NIH could have funded all ten applications and it would not have made a dent in the low funding for ME after 34 years of neglect. The message to me in my age cohort and likely the one below me:,You’ll die with this disease and we’re not terribly concerned.
Yes, Michael Allen PhD that was my reaction too. At 61 after 23 years’ illness for me, I realized I will not likely see another day of feeling well in my lifetime.
yes, Michael and Pat, I feel/felt the same. But I still, allthough my situation is verry difficult, have a little bit of hope from ron davis and his willing to get forward. But as severelly ill as I am, and totaly alone, I have to face the fact that I maybe will not make it. If I get to weak, to even eat, I have a verry big problem. But nobody knows what the next day will bring, sometimes it are coincidence that makes breaktroughs in a desease. I hope and fight for that allthough I am scared.(also a very long term suffferer)
I agree with Dr Allen here. With proper funding and encouragement, the ME/CFS mystery could have been solved by now. I am being treated by a prominent CFS Doc (since 2009) and when pressed, he is excited about new research and interest but not so optimistic about diagnostic/treatment breakthroughs any time soon. At age 60, I have tried just about everything out there and have had limited success. The one thing that really made a difference was Ampligen and I have no access to it right now. Knowing that my quality of life will most likely not improve is so discouraging. If only…
michael you are ‘dead’ right about us dying with this illness just because the nih couldnt care less. they have twice tried to cut funding for this illness altogether and only restored it because everyone made a noise. francis collins said that there is going to be an enormous ratcheting up of the scale of ME research. i have yet to see this.
5 million 7 million. okay so that will make a difference in 49 years instead of 53
It seems NIH is just one of many bureaucracies, sigh …
Yes, it certainly is a bureaucracies and bureaucracies are not good at reading between the lines, understanding historical contexts (i.e. Davis with his experience should be allowed to do his thing even if some aspects of his application; i.e. publication record didn’t fit the criteria.) etc.
It is a vitally important bureaucracy to crack, though, and hopefully Davis and the others will get funded soon. If Davis and the others could score a couple of nice grants over the next year it’s possible they could come out ahead in some ways given that they won’t need to observe burdensome reporting requirements and provide extramural funding.
Let’s hope the grant review session coming up next month is busy and productive. The NIH wants grant applications – hopefully they’ll get a lot of them.
Thank you for the great overview Cort. It is very encouraging to watch the NIH take a forward step on Dr. Collin’s two-year-old promise to reinvigorate ME/CFS research. However, I continue to be distressed over the absence of urgency around an illness that boasts a staggeringly high suicide rate. “Maybe next year” is a death sentence. It is no wonder that “the patient community’s” favorite is Ron Davis. He lives and breathes ME/CFS for all of us and has the knowledge to write a new narrative.
I stand with those who support immediate donations to the Open Medicine Foundation. They continue to fund the ground-breaking work of Ron and his elite team of scientists. If each person whose life is bound to the millions with ME/CFS gave $20 imagine the possibilities? The hourglass has run out of sand. Together we have the capacity change the course of history. BE BOLD. Donate.
🙂 “Boldness has genius, power and magic in it”
i agree if everyone donates 20 dollars towards research, it will make a huge difference, but unfortunately most patients have the disastrous mentality that they need to try every unproven treatment under the sun and dont consider the oppportunity cost of their decisions in terms of foregone research projects
They should have funded Davis. The search for an immune marker keeps turning out studies that are not really helpful to patients because there are not many ways to treat the immune system other than cancer drugs. The only thing you can say for these types of studies is that they improve the reputation of the disease and could be foundations of further study. But this is not helpful to patients. Davis at least is patient oriented and potentially efficacious.
Nice summary…It’s a win but not a big win. It is narrow attempt and continues the lack of real support both financially and NIH’s commitment and seriousness to finding a cure. For years the NIH has used excuses that there weren’t researchers to fund. It was a ruse and still is. It would be a miracle if this helped the aging ME population has been ill for 2-3 decades. To find answers in a complicated disease that affects so many systems takes hundreds of millions of dollars concentrated over many years. At this pace it will be another two decades before ME patients have an intervention much less a cure. The bottom line is this far from being good enough.
All good points Mike. We simply have to keep pushing forward…
If we had more money we would have more Centers. NINDS and NIAID put in some somewhat decent money for the RFA but everyone else on the Working Group dragged their feet. If all the members of the Working Group had put in at least $250,000 we would have had a couple more Centers!
What is an Institute doing on a Working Group for a disease when it can’t pop for $250,000 a year to support that disease. That’s piddly stuff for Institutes like these.
Note that there is no Center on the West Coast!
Let’s hope this gets the ball rolling and we won’t be having these conversations in five years.
I was really crying when I read that ron davis did not get the money. I still feel sad and death inside. I think the NIH does not like the way ron davis works. He is not collering inside the lines from the NIH, he wants to put his work on a platform and make it available for other researchers, he does not write first papers before publishing, he is an out of the box thinker, he wants and is collaboting with other researchers, he wants/makes new technologies to put the cfs/me research a step(s) further, he cares about the bedridden ones, the homebound or whealchairbound ones,he is just to big for the NIH …and he’s just all that that the NIH is not in an excellent way.
If we all would worldwide give 5 dollars, 5 euro’s, or some onther money… we are worldwide with millions, that would help him and the OMF a great deal. Ofcourse I will donate and say a big f.ck y.u to the NIH. But I do not understand that not eveyone is giving him a little bit off money, as we are with millions of sufferers. This is the medicine of the future! the personalised medicine. And we all have our own complex symptoms, with an overlap but no 2 persons are the same. So it must be personalised medicine and treatment.
And yes indeed, all ten proposals could have easeally be funded by the NIH but they do not care a bit. It is just a show where they are saying we are doing a little bit. It is just Like Ian Lipkin said 3 times, so few money, it is allmost impossible to do anything with that. sad, sad, sad days…
Konijn, I agree with you on all points and I also cried out loud at the complete disbelief that Ron Davis wasn’t funded. Atrocious and unforgivable by the NIH.
Good summary, Cort – thanks, as always.
Cort – I can’t thank you enough for your comprehensive and articulate coverage of the current news/events related to mecfs research. You are the NPR/NYT for all things mecfs, getting the technical aspects correct, and fair and balanced. Thank-you for all your contributions to everyone affected, you make a difference in people’s lives.
Related to the teams who received center awards, what is essential is the selection of the study section panel. I agree with Dr. Allen above that the SS members did not have anyone in their family suffering from mecfs (implied). If they had, the Davis team would have been paid. I have served on at least 25 NIH SS panels since 1998, so I see the kinds of things that “can” happen. I gave $ to OMF precisely because of Ron Davis’s videos. I knew his reputation, but then I listened to how he was approaching this disease. So not only, as you say, “Davis was clearly the patient community’s favorite,” he is also the scientist’s favorite, unless there are COI factors at work.
I think he and key members of his team will recover, because prior success is the best predictor of current and future success (or, however that quote goes).
Good point. While the decision was obviously not what they wanted, the work will continue – just not as fast as they and everyone wants. I imagine that the support, however, will continue to flow in and Ron will get some individual grant funding. Two nice grants and Davis has basically replicated the funding he would have gotten for the Center for a couple of years. May it be so!
The nano-needle is a harder sell because it’s so new and the NIH can be so conservative, but I find it hard to believe that a grant review panel is not going to fund Mark Davis’s clonal expansion work on ME/CFS…
Davis is very dedicated and is going to keep moving forward.
As one of the people who has been sick since 1979, I do find it distressing that no one is going to work with people who have had it for a long time. I’ve lost a lot of my life so far, and now I’m 64 years old. I really was hoping that I would be able to get some of my life back before there was nothing left to get back. I hope someone thinks about this and figures out some way to treat the long-term individuals. Thank you.
Yes, indeed. The longer term ill do, of course, make up the bulk of ME/CFS sufferers. While there has been some concentration on shorter term ill people (who are less complicated), hopefully that work will provide insights into the rest of us. I’m certainly hoping it will.
Sue, I am also a long term sufferer who went worse and worse but that is exactly the reason why I finf ron davis and the OMF team so special. It is precision medicine, just for you as an individual. Maybe I am wrong, but I think with individualised medicine, it does not matter how long you are ill and how worse you are or what complaints you have. That is my little bit of hope as a long term severely ill patient.
Thanks Cort for this comprehensive summary of the grant winners. I’m hoping for good things to come from the 3 Centers.
As for your comments about why Davis wasn’t funded, I agree it’s incredibly disappointing. However, the very fact that his nanoneedle is so innovative may well be one reason why his application wasn’t successful.
Despite their rehtoric about innovation, government agencies are highly risk-averse. It’s their job to maintain the status quo, including requirements for researchers to have published papers in certain areas even when they say they want to encourage new people to enter the field. Weird but true.
I wouldn’t be surprised if the newness of the nano-needle was a major issue. I hope they can get over it though – that instrument has a lot of promise.
http://occupyme.net/2017/09/27/finally-rfa-funding-announced/
on the bottem of the text you can read why ron davis was not selected and that 2 grants he asked for before where turn down.
I do not have a good feeling that the NIH will suddenly “like” him and give him 2 large grants all of a suthen.
The NIH does not know what they are missing with ron davis, all his connections and what he does.
Does anyone know if this $7 million a year for research centers is in addition to the roughly $7 million a year already budgeted for ME/CFS (https://report.nih.gov/categorical_spending.aspx) or if this just how that money already budgeted is going to spent?
In other words, is the NIH planning to now spend a total of roughly $14 million a year on ME/CFS or just the $7 already budgeted?
Yes, It is in addition – so spending on ME/CFS will be around $14 million/yr – that is, if we don’t get an upturn in individual grant funding. Hopefully we will.
Thanks for the info! Can you provide the source where you got this information?
Though I would have liked to see Ron Davis in there,and Klimas also would have been nice but these are pretty great choices. I think we as a patient community have finally caught a real break. I think we are lucky to have these choices.
I feel the same. I would have loved to have Ron get more money but these are excellent researchers and we will do well with them. It’s nice that these good researchers have shown up in the last five years or so. That’s a good sign.
Now we need to work to get more money…..
I am thankful that gut biome research will be funded. I personally believe that it is there the cure will be found. All the neurological symptoms are side effects of what is going on in the gut, and will be cured when the gut is healed.
Jennie Spotila’s blog states $6.1M in non-RFA funding for FY17, which is a drop of $1.5M from FY16.
We should not be discussing competing for individual proposals (against other diseases), as the playing field has already been established to be not level. The focus needs to be on getting NIH to fund additional centers in FY18 – and starting soon, not debating it until next September.
Actually the evidence suggests that individual grant applications for the ME/CFS SEP – the grant review panel for ME/CFS are being funded at a higher rate than normal.
https://onedrive.live.com/view.aspx?resid=B8BBD08BB4C4831A!9016&ithint=file%2cdocx&app=Word&authkey=!AJYntvqR_-yV1LM
Only 13 grant applications were attempted during 2016. I suggest that we need both – more individual grant applications and more research center funding. Since it took somewhere around a year for the Institutes to pony up the limited amount of money they finally did pony up for the Centers, I’m not sure that more funding is in the cards for the near future.
Cort, re Hanson’s work on “extracellular vesicles”, you did an article re 2015 NIH funding round. One of the projects related to “exosomes” which I assume are extracellular vesicles (from Wikipedia). James Baraniuk was the lead. Do you know if Baraniuk’s study was published?
Forgot to mention Derya Unutmaz refers to dendritic cells (in the video you link to) and Neil McGregor referred to these cells in his presentation at the recent OMF symposium. Neil refers to a genetic mutation “CD207 gene codes for Langerin, which is a protein found in dendritic cells”.
Thanks!
Ha! I don’t believe so. I was unable to find it during a PubMed search.
Cort, regarding NIH’s funding of ME/CFS research centres and single grant proposals. It’s just dawned on me that potentially this could be used to put pressure on the the European Union/European Commission i.e. to similarly fund ME/CFS research centres and single grant proposals under their program [Horizon 2020 – roughly €/$80 billion]. I’ve emailed Frederique Ries (member of the European Parliament – MEP), she’s previously raised the issue of Lymes disease which is clinically similar to ME/CFS – no reply yet.
ME/CFS is more common in women than in men (4:1), as are Lyme disease and fibromyalgia (2:1). Therefore, there’s an equality issue in the funding of these diseases.
The symptoms of ME/CFS, Lyme disease and fibromyalgia overlap. Therefore, research into any one of these diseases will benefit people with any of these diseases.
So get on to your MEP (particularly female MEPs) and ask that they challenge the European Union/European Commission to match the approach in America i.e. fund research centres and single grants for ME/CFS.
I like it!
Hi the following is an extract from the answer given by the European Commission to a European Parliamentary question which was asked by Alex Mayer MEP re funding for ME/CFS research “To date, no specific projects on ME/CFS have been supported by the EU Framework Programmes for Research and Innovation.”
The answer also states that “The bottom-up approach of the Horizon 2020 calls for proposals provides applicants with freedom in the choice of their investigations.” I think this may be misleading since the Commission has (from memory) e.g.specifically sought proposals to develop a diagnostic test for Lymes disease.
We need to try to keep the pressure on the Commission and an international forum like this may help. Try getting an MEP to ask a question re ME/CFS.
Google “E-006901/2017” to see the question/answer.
Thanks Cort.
“Alex Mayer (S&D)
Subject: Funding of research on ME/CFS
Answer(s)
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects more than one million people within the EU. This illness is characterised by persistent and excessive fatigue, post-exertional malaise, flu-like symptoms and cognitive impairments. Most sufferers are unable to lead a normal life. Those affected are predominately women.
Many of the symptoms of ME/CFS overlap with those of Lyme disease and fibromyalgia.
There are no established biological diagnostic tests for ME/CFS, nor are there any treatments.
Scientists from Newcastle and Cornell Universities have recently published data showing that mitochondrial energy production is impaired in ME/CFS, while mental health remains normal. Scientists at Stanford University have also recently published data showing activation of immune cells (clonal expansion) in ME/CFS, which is similar to that found in Lyme disease.
These studies highlight the need for biological research into ME/CFS. Recently, the American National Institute for Health (NIH) allocated funding to biological ME/CFS Research Centres and single ME/CFS projects.
1. Will the Commission review the recently published biological ME/CFS studies and fund expanded studies which include Lyme disease and fibromyalgia?
2. Will the Commission review the recent allocation of NIH funding for biological ME/CFS research and set out how it proposes to fund ME/CFS research?”
————————————————————
“Answer given by Mr Moedas
on behalf of the Commission
(18.12.2017)
The Commission is aware of the study on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) referred to by the Honourable Member, which was published in the scientific journal PLOS One 1 . As a matter of policy, the Commission does not assess the results of individual research projects that do not relate directly to its funding activities.
Neither is the Commission in a position to comment on budget allocations by third party research funding agencies, although it is in a regular contact with some of them, such as the US National Institutes of Health (NIH) or the Canadian Institutes of Health Research (CIHR).
To date, no specific projects on ME/CFS have been supported by the EU Framework Programmes for Research and Innovation. However, the project GLORIA 2 is investigating the pathophysiology of chronic pain conditions including fibromyalgia.
Horizon 2020, the Framework Programme for Research and Innovation (2014-2020) 3 , provides opportunities for supporting research on ME/CFS, fibromyalgia as well as other neuro-immunological disorders, including better diagnostics and care. The bottom-up approach of the Horizon 2020 calls for proposals provides applicants with freedom in the choice of their investigations. More information can be found at the Research and Innovation Participant Portal 4 .
1 http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0186802
2 http://gloria.helsinki.fi/?page_id=168
3 https://ec.europa.eu/programmes/horizon2020/
4 http://ec.europa.eu/research/participants/portal/desktop/en/opportunities/h2020/index.html“
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