OMF Newsletter March 2018

[frozenborderline]

OMF have been doing an outstanding job. I understand how frustrating it is to wait for results, but they have a lot of pressure on them... science like this isn't easy even with funding, which has been inadequate until recently.

I understand the frustration some of the people in this thread feel. I don't feel like I can wait until an FDA-approved cure comes, which is why I'm watching the research like a hawk and experimenting with medications, hormones, etc... that may be risky, on my own. I simply know that I can't wait ten years for a cure, I will kill myself if that doesn't happen far before then. But that isn't on Ron/OMF. They are doing the best job possible, and I don't think the frustration many of us feel with slow scientific progress should be vented at them, at all.

I mean perspective is important here. Ron and Naviaux have been doing incredibly high quality work. That entails being cautious and gathering data before hypothesis testing.

@Janet Dafoe (Rose49) Thanks for the work you do and I apologize that some people are so critical here.

One thought I do have is that it would be great to get as many research updates as possible, like the videos ron does. I am aware that he is extremely cautious and probably doesn't want people to run with his speculation, but with the slow pace of research I think it would be great to hear anything, even speculation. I don't think it would be irresponsible at all to do that. People here can make their own decisions on whether they would try something or develop a theory based on the speculation.

 

[Janet Dafoe]

If everyone could just know how dedicated Ron and his team are, and how experienced and excellent they are, perhaps they could understand. He does basically nothing else but work on this. There are lots of aspects to it. The science projects themselves, the effort to get more funding, which, for this endeavor, he actually needs lots more of, our dedication to getting information to patients without causing any harm, education and getting more high-end researchers involved, education of MD's, writing grants, writing up new ideas and updates on progress, planning how to make projects go faster (which is not like regular upscaling - it's about the tricky business of doing good science), finding and hiring new people, which is tricky because he has to find the best and decide which kind of person to invest in, etc. As well as trying to get information and make decisions about possible treatments for Whitney and responding to his needs, like his current infection and how to treat it. And yes, we want to do more update videos, but everything takes time. There is a Mike Snyder one in the works right now. And planning for a Sept meeting like last year's. All I can say is that Ron has a lifetime of success in doing good science and running big complex projects and I trust him. I feel frustrated too, and I bug him, but he is just as stressed and motivated as I am and as all of you are and is always deciding how to spend his time and efforts to best effect.You guys have more information from Ron's team than anywhere else I know of, which we are dedicated to continuing, but it feels a little like an unintended consequence to be criticized for not doing more. I do understand though. Your suffering is horrendous. I see it every singly day in our own son, and believe me, we feel for you. I do relay all the helpful suggestions, ideas and studies to Ron and team and many have been really helpful. I don't always have time to get back to everyone who sends things, but they do get to Ron. And you know, there are other very dedicated scientists working on this too! Maureen Hanson, Unamatz, Younger, Armstrong, Moreau, Fluge and Mella, and others, and all the doctors who are constantly trying to figure out how best to help. And all the advocates who are trying to get GET off the table and PACE in the garbage and lobby in the UK, and lobby NIH and the CDC and Congress, and so much more. So I don't really mind hearing about your frustration, but I hope you will keep these things in mind and treat us as partners. I appreciate you all very much.

 

[frozenborderline]

If everyone could just know how dedicated Ron and his team are, and how experienced and excellent they are, perhaps they could understand. He does basically nothing else but work on this. There are lots of aspects to it. The science projects themselves, the effort to get more funding, which, for this endeavor, he actually needs lots more of, our dedication to getting information to patients without causing any harm, education and getting more high-end researchers involved, education of MD's, writing grants, writing up new ideas and updates on progress, planning how to make projects go faster (which is not like regular upscaling - it's about the tricky business of doing good science), finding and hiring new people, which is tricky because he has to find the best and decide which kind of person to invest in, etc. As well as trying to get information and make decisions about possible treatments for Whitney and responding to his needs, like his current infection and how to treat it. And yes, we want to do more update videos, but everything takes time. There is a Mike Snyder one in the works right now. And planning for a Sept meeting like last year's. All I can say is that Ron has a lifetime of success in doing good science and running big complex projects and I trust him. I feel frustrated too, and I bug him, but he is just as stressed and motivated as I am and as all of you are and is always deciding how to spend his time and efforts to best effect.You guys have more information from Ron's team than anywhere else I know of, which we are dedicated to continuing, but it feels a little like an unintended consequence to be criticized for not doing more. I do understand though. Your suffering is horrendous. I see it every singly day in our own son, and believe me, we feel for you. I do relay all the helpful suggestions, ideas and studies to Ron and team and many have been really helpful. I don't always have time to get back to everyone who sends things, but they do get to Ron. And you know, there are other very dedicated scientists working on this too! Maureen Hanson, Unamatz, Younger, Armstrong, Moreau, Fluge and Mella, and others, and all the doctors who are constantly trying to figure out how best to help. And all the advocates who are trying to get GET off the table and PACE in the garbage and lobby in the UK, and lobby NIH and the CDC and Congress, and so much more. So I don't really mind hearing about your frustration, but I hope you will keep these things in mind and treat us as partners. I appreciate you all very much.

I think you should keep in mind that people get frustrated and channel the frustration at the wrong targets. OMF has been great. I think so, and many other people think so. Don't worry about the naysayers

 

[neweimear]

I think alot of the venting comes from a place of fear. Fear that answers will not come in time for us, fear that our lives will be lost. And out of that fear and sense of helplessness comes anger, that gets vented at the wrong people, be it at home or online. Thank you for writing Janet, I know the last thing you need is to be placating desperate patients. It's hard on us all at times. Believe me, I've written to NIH and Francis Collins outlining my concerns very clearly so I don't just question OMF. We are all in it together at the end of the day...all we can do is keep going and hope our luck comes good.