ME/CFS Collaborative Research Centers & Data Management Center Announcements

A.B.

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My own comment about this is that I am extremely bummed and disappointed about this, because I strongly believe that the fastest way for Whitney (and by extension, all of you) to get better is for Ron to have all the funding he needs. And I'm really upset and mad about the stupid and uninformed reasons the reviewers used. It's ridiculous. And I'm being conservative with how I describe the reviews.They were awful. They seemed biased to me. And I'm not just saying that out of sour grapes. It was shocking to read.
Can you tell us more about these reviewers?
 

Jesse2233

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I've drafted this petition to Francis Collins, Walter Koroshetz, and the NIH. Let me know your thoughts...
ME/CFS (Myalgic encephalomyelitis / Chronic fatigue syndrome) is a debilitating long term illness that affects up to 2 million Americans. Many sufferers are unable to leave their homes or beds due to debilitating neurological symptoms and devastating exhaustion. There is currently no cure.

In a 2015 report, the Institute of Medicine deemed quality of life for ME/CFS patients to be worse than those with HIV, multiple sclerosis, cancer, rheumatoid arthritis and stroke. Yet the disease receives a fraction of the federal funding of these other serious conditions and has no FDA approved treatments.

Dr. Ron Davis is the director of the Stanford Genome Technology Center and leads a collaborative consortium of scientists to solve the mystery of ME/CFS. His research was instrumental in completing the Human Genome Project, and he was listed in The Atlantic as one of the greatest innovators currently working. His 31 year old son Whitney Dafoe is severely affected by ME/CFS. Witney is completely bedridden and is unable to speak, read, or endure speech. He receives nourishment from a saline IV and a feeding tube. He is occasionally able to communicate via pantomime indicating fully functioning awareness and cognitive abilities.

Dr Davis has assembled a research team which includes three Nobel Laureates and six National Academy of Sciences Members. In a short time he has already elucidated core aspects of the disease including impairment of crucial metabolic pathways. He has also developed the first blood test to identify those who suffer from ME/CFS, and has built a novel electronic sensor that allows him to rapidly test existing drugs for effective treatments. In addition Dr Davis has become a hero to the ME/CFS community, publically demonstrating for the disease's awareness and recording lengthy YouTube videos to answer patients' questions about his research. Unfortunately Dr Davis' work was denied NIH funding this year.

Dr Davis' research is innovative, timely, and vital, and needs to be funded NOW. Sign this petition and tell NIH director Francis Collins that ME/CFS patients can no longer wait another day. Millions of mothers, fathers, sons, and daughters have been separated from their lives for too long.
Edit:
I have posted an updated draft for a petition to the NIH here. Please take a look and give me feedback. I want to make sure it balances gratitude to the NIH for the funding increase and respect for the respects that won with urgency and a strong rationale for funding Dr Davis
 
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Ron says: Our grant had a number of senior scientists at Stanford, including myself, Mark Davis a world renowned immunologist, Mike Snyder, Chair of Stanford Genetics dept, ranked the best genetics department in the world, and expert in big "omics" data, Craig Heller, a world expert in exercise physiology and fatigue, William Robinson MD, expert in autoimmune and Lyme's disease, Lars Steinmetz, an expert in complex genetics and mitochondria, as well as scientists from other universities, including, Robert Naviaux, USCD, world renowned expert in metabolomics and mitochondria physiology, Curt Scharfe, Yale Univ, expert in mitochondrial genetics, Wenzhong Xiao, Harvard, expert in bioinformatics and big data analysis, Robert Phair, CEO of Integrated Biioinformatics, Inc, which models complex biochemical pathways, Lucinda Bateman, of the Bateman-Horne Center, one of the foremost ME/CFS experts in the country, and Susan Levine, another well-known ME/CFS physician.

One of the major complaints was that I had no publications on ME/CFS. One of the criteria of this RFA was to bring new people into the field, which is impossible if reviewers exclude investigators without prior publications. The team I put together would be phenomenal for this field. All of us have experience and a myriad of publications that are directly relevant to the study of ME/CFS.

The review complained that our institutional environment was "mediocre". The Stanford office that reviews all Stanford grants told me that they had never seen a Stanford rating anywhere close to that low in their entire history. It's absurd to think that Stanford is not an excellent institutional environment.

They argued that my involvement with OMF constituted a conflict of interest. In fact, our interests are aligned, not in conflict! This is mystifying given the fact that the RFA required applicants to work with an NGO.

They didn't like our nano needle instrument. They said it's probably only measuring cytokines, but there's no data for that. They said it wasn't certified as government-approved for medical use with patients. This was mystifying because one of the aims of the grant was to develop the nano needle for medical use!

They complained that Janet was part of the community outreach part of the grant because she is my wife.

They said I had a conflict of interest because my son has ME/CFS.

They didn't like it that I had put out videos with preliminary results and ideas to the patients on PR and elsewhere because it was unpublished and not peer-reviewed.

There were a number of other criticisms that were mostly about scientific issues, that were mostly wrong. For example, we were proposing to use IPS cells, which they said wasn't validated, but in fact, it's used extensively and it's being used in the NIH Intramural study!

This is not a complete list, but I think you can get the picture from these examples.

We of course will continue to write grants until NIH funds us (we are submitting an R01 grant on Oct 5), and we will continue to actively work with OMF to raise private donations, but this is definitely a big setback. I was especially sad on Monday when Whitney was communicating with us on ativan and he cried in pure anguish, knowing that we can't help him as fast as I'd like to.
 

Alvin2

The good news is patients don't die the bad news..
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In a 2015 report, the Institute of Medicine deemed quality of life for ME/CFS patients to be worse than those with HIV, multiple sclerosis, cancer, rheumatoid arthritis and stroke.
i would mention its prevalence rivals these conditions (get some HIV/MS numbers to add)
 
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@Janet Dafoe (Rose49) Are ye very disappointed about the RFAs. I hope there are other ways forward, that a grant proposal can be submitted again, any luck sourcing any generous philanthropists? I was gutted today but I know Dr.Davis will keep ploughing on...
I'm extremely gutted. Yes, he is submitting another R01 on Oct 5, but if he gets it it will be months till it's funded. Watching Whitney and you all suffer makes it nearly unbearable to think of waiting longer. Linda at OMF is working like crazy to get funders. And yes, Ron is bummed, but it isn't stopping him for one minute. Well, maybe for a minute. He was pretty disappointed.
 

Alvin2

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Ron says: Our grant had a number of senior scientists at Stanford, including myself, Mark Davis a world renowned immunologist, Mike Snyder, Chair of Stanford Genetics dept, ranked the best genetics department in the world, and expert in big "omics" data, Craig Heller, a world expert in exercise physiology and fatigue, William Robinson MD, expert in autoimmune and Lyme's disease, Lars Steinmetz, an expert in complex genetics and mitochondria, as well as scientists from other universities, including, Robert Naviaux, USCD, world renowned expert in metabolomics and mitochondria physiology, Curt Scharfe, Yale Univ, expert in mitochondrial genetics, Wenzhong Xiao, Harvard, expert in bioinformatics and big data analysis, Robert Phair, CEO of Integrated Biioinformatics, Inc, which models complex biochemical pathways, Lucinda Bateman, of the Bateman-Horne Center, one of the foremost ME/CFS experts in the country, and Susan Levine, another well-known ME/CFS physician.

One of the major complaints was that I had no publications on ME/CFS. One of the criteria of this RFA was to bring new people into the field, which is impossible if reviewers exclude investigators without prior publications. The team I put together would be phenomenal for this field. All of us have experience and a myriad of publications that are directly relevant to the study of ME/CFS.

The review complained that our institutional environment was "mediocre". The Stanford office that reviews all Stanford grants told me that they had never seen a Stanford rating anywhere close to that low in their entire history. It's absurd to think that Stanford is not an excellent institutional environment.

They argued that my involvement with OMF constituted a conflict of interest. In fact, our interests are aligned, not in conflict! This is mystifying given the fact that the RFA required applicants to work with an NGO.

They didn't like our nano needle instrument. They said it's probably only measuring cytokines, but there's no data for that. They said it wasn't certified as government-approved for medical use with patients. This was mystifying because one of the aims of the grant was to develop the nano needle for medical use!

They complained that Janet was part of the community outreach part of the grant because she is my wife.

They said I had a conflict of interest because my son has ME/CFS.

They didn't like it that I had put out videos with preliminary results and ideas to the patients on PR and elsewhere because it was unpublished and not peer-reviewed.

There were a number of other criticisms that were mostly about scientific issues, that were mostly wrong. For example, we were proposing to use IPS cells, which they said wasn't validated, but in fact, it's used extensively and it's being used in the NIH Intramural study!

This is not a complete list, but I think you can get the picture from these examples.

We of course will continue to write grants until NIH funds us (we are submitting an R01 grant on Oct 5), and we will continue to actively work with OMF to raise private donations, but this is definitely a big setback. I was especially sad on Monday when Whitney was communicating with us on ativan and he cried in pure anguish, knowing that we can't help him as fast as I'd like to.
Sounds like they have a personal grudge against Dr Davis. Thats not going to be easy to deal with because in that case its not about technical or logistical issues despite their "explanations", its about something else. But what or why is the question.
 
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I'm extremely gutted. Yes, he is submitting another R01 on Oct 5, but if he gets it it will be months till it's funded. Watching Whitney and you all suffer makes it nearly unbearable to think of waiting longer. Linda at OMF is working like crazy to get funders. And yes, Ron is bummed, but it isn't stopping him for one minute. Well, maybe for a minute. He was pretty disappointed.
Really thinking of you all. right now. So sad if #mecfs17 impacted the decision. That day gave me the first great hope for an enlightened approach to excellence in research. An insight into the work of the brightest & best researchers combined with compassion for patients and informed by personal experience. A real tragedy if that is seen as a conflict when the science is top quality. A real problem if medical research has no humanity.
 
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Really thinking of you all. right now. So sad if #mecfs17 impacted the decision. That day gave me the first great hope for an enlightened approach to excellence in research. An insight into the work of the brightest & best researchers combined with compassion for patients and informed by personal experience. A real tragedy if that is seen as a conflict when the science is top quality. A real problem if medical research has no humanity.
No, we don't think #mecfs17 impacted it. We wished they could have seen it, but they probably reviewed the grants before that happened. And the reviewers probably aren't in the loop to have watched the live-stream or know it's on YouTube.
 
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I can't believe this ...talking to patients, being open with the community and having a vested interest is a bad thing?.

Sounds as contrived as the UK. This was our biggest opportunity to get to the heart of the problem rather than skirt around the periphery of symptoms.

I would say publish, but they will just find more excuses. It's amazing how a handful of abusers of power can have such a devastating effect on so many sick people.
 
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No, we don't think #mecfs17 impacted it. We wished they could have seen it, but they probably reviewed the grants before that happened. And the reviewers probably aren't in the loop to have watched the live-stream or know it's on YouTube.
Thank you for responding, and so relieved that #mecfs17 wasn’t an issue. My heartfelt thanks for all you, Ron & others are doing & the way you are doing it. And for keeping on keeping on.
 

Alvin2

The good news is patients don't die the bad news..
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I've drafted this petition to Francis Collins, Walter Koroshetz, and the NIH. Let me know your thoughts...


@Janet Dafoe (Rose49) does Ron think something like this would be useful / appropriate?
In light of their "reasoning" you may want to adjust your letter. Its 4am here so i can't give much advice on how right now
 
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Oh my god, I was mad before, but this is just pure bullshit on so many levels.

I say it's time to do a full-on storm of the NIH. Petitions, emails, social media, everything. I believe NIH's attitude towards Ron and Stanford is currently the single biggest obstacle in us getting back to health as soon as possible. So let's do something about it. Let's make an organized effort to pressure them.

First, here is their facebook post about it - https://www.facebook.com/nih.gov/posts/10155507737816830 I suggest we go comment on it.

Then we go tweet at:
https://twitter.com/NIHDirector - Collins
https://twitter.com/nindsdirector - Koroshetz

Then we email them at grantsinfo@nih.gov and call them at 301-496-4000

But be *polite*. Don't insult them. Thank them for spending money on ME/CFS research. But also insist that we patients want Ron Davis and his team to get funded most of all. That we believe it's the best team to solve this illness, far above the rest. That we are really disappointed this RFA didnt go to them. That we would like them to get as much funding as they request. Again, be polite about it. Polite, but firm.
 

Sasha

Fine, thank you
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jesse2233 said:
He has also developed the first blood test to identify those who suffer from ME/CFS,
Hi Jesse - AFAIK, Dr Davis hasn't yet developed a diagnostic blood test for ME/CFS. I know he's trying to develop one, but I don't think it's been validated, and it's unknown how specific and sensitive it is. I think it's important not to overclaim.

Is that correct, @Janet Dafoe (Rose49), or am I behind with things?
 
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I just have to tell you how much I loved reading that sentence!
Oh my, and here I was being star-struck that you liked my post. ^ ^ But I meant it, its like the whole time since you sent the application, they spent holding meetings and debating to come up with the most bullshit reasons to decline it.

The one question I want to ask, because I think this is important - are the reasons they gave you supposed to be public? Are we allowed to reference them in our emails etc to NIH? Or are we supposed to pretend we haven't heard them and focus just on the fact that we think Ron's team is best?
 
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