ME/CFS Collaborative Research Centers & Data Management Center Announcements

[necessary8]

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?

I think you are correct, its not yet validated as a diagnostic test. As stated earlier, making it into a diagnostic test was part of the grant that just got declined. You are right in saying that we shouldn't overstate. I would say its the most promising method of diagnosis, if validated, and the strong suggestions of a molecule in the blood are our strongest lead to uncover the core of the mechanism behind this illness, and develop treatments.

 

[Janet Dafoe]

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 on the most bullshit reasons to give.

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?

Ron has decided to make them public by posting them here. He 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. NIH cannot say they don't get good applications.

 

[Janet Dafoe]

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?

The nano needle is very promising and so far has been able to distinguish between ME/CFS patients and healthy controls every time. But it's not understood exactly what's being measured, and it's not fully developed as a completed diagnostic test. That's the plan. That was one of the aims of the grant - to develop this very promising technology so that it can be used as fast as possible.

 

[lisette.w]

Ron has decided to make them public by posting them here. He 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. NIH cannot say they don't get good applications.

Ron has decided to make them public by posting them here. He 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. NIH cannot say they don't get good applications.

Rose you really need to update the money line, people need te see how much/what they give, start crowdfunding! we can't see anything on the OMF site.

 

[Janet Dafoe]

Rose you really need to update the money line, people need te see how much/what they give, start crowdfunding! we can't see anything on the OMF site.

I'm not sure exactly what you mean. I'm not in charge of OMF but I can certainly relay a request to Linda. But can you explain a little more what you are asking? Thanks.

 

[lisette.w]

I'm not sure exactly what you mean. I'm not in charge of OMF but I can certainly relay a request to Linda. But can you explain a little more what you are asking? Thanks.

People need some visueel crowdfunding as david tuller and Jennifer Brea did..see the money go up..we can tweed / facebook, moved people even day, week, month.

 

[Daisymay]

Ron has decided to make them public by posting them here. He 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. NIH cannot say they don't get good applications.

Rose, I'm so very sorry Ron and colleagues did n't get a grant. Utterly, utterly absurd. Defies logic.

 

[TreePerson]

People need some visueel crowdfunding as david tuller and Jennifer Brea did..see the money go up..we can tweed / facebook, moved people even day, week, month.

Yes I agree with this. Good idea. It makes it much more of an ongoing campaign and people enjoy seeing the totals rise.

 

[Solstice]

Does this mean that the microbe discovery project doesn't need to crowdfund anymore? Did they get all the funding they needed? If so it makes it really easy for me/us imo, scrape together whatever possible to fund the omf.

 

[Hajnalka]

I've drafted this petition to Francis Collins, Walter Koroshetz, and the NIH. Let me know your thoughts...

Hi @Jesse2233, thank you for your time and effort! I realize this is just a draft, as you said. My thoughts are that a petition would have to be worded really carefully and exact (especially since ME patients are already accused of pressuring institutions into decisions, being unreasonable and only accepting research they "like"). I've worked for NGOs and with petitions in my old life and it's tempting to put petitions out there quickly, because it's so easy, but a convincing thought through petition really pays off in the end.

and he was listed in The Atlantic as one of the greatest innovators currently working.

It was inventor (not innovator).
Quick thoughts are to not give the personal motivation (his son) too much room. And to focus more on the quality of his proposal and his extraordinarily collaborators than the severity of ME or his prior achievements (that are well known). And how he manages to bring top researchers together and is willing to collaborate and share and how he makes more and more highly qualified people interested to study ME/CFS. The "hero" is a little too emotional in my view. I think it's worth to focus on the advantages of Ron David's research. E.g. Ron stated somewhere that his approach to test everything will save time and money in the end, because whatever researchers plan to look at closer in ME patients in the future, they will have already test results they can use - stuff like that might give solid reasons.

Just some superquick thoughts. Can't propose phrases with my English skills, so can't give more constructive criticism, sorry . Maybe you could ask the OMF about the petition and if they like the idea write it together with e.g. Linda?
Thanks again!

 

[TreePerson]

Cytokines really...? Monotoya showed mild patients have lowered cytokines and Ron's assay still identifies mild patients

And Maureen Hanson has a son with ME for Christsake. That doesn't make her biased. Why fund her and not Ron? (Not saying she doesn't deserve it, because her work is great as well!)

Re-the cytokines – wouldn't it be relatively straightforward to test the nano sensor with blood from people who don't have ME but do have other conditions known to raise cytokines? It would be interesting as well.

 

[Neunistiva]

Thats old news but they did fund 3 others (finally)

I may have misunderstood, but from what I've seen none of those 3 will be looking for a treatment in the next 5 years.

I do agree with you that it's good they at least funded something. Just not good enough.

 

[Alvin2]

I do agree with you that it's good they at least funded something. Just not good enough.

I agree, they screwed up, something may be better then nothing but i prefer the best use of resources possible for the most progress.

 

[Stewart]

Ron has decided to make them public by posting them here. He 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. NIH cannot say they don't get good applications.

@Janet Dafoe (Rose49)

I don't want to tear Ron's attention away from the research any more than is strictly necessary but I hope someone from the Stanford team will write a politely worded - and public - letter to the NIH expressing disappointment that the reasons given for refusing their grant application were demonstrably complete drivel.

It's natural to be disappointed and frustrated when a grant application that you invested a lot of time and energy in isn't successful and a research project that you passionately believe in is jeopardised as a result - but it's really not acceptable for the NIH to justify that decision with reasons that repeatedly contradict the criteria set out in the RFA. After so many years of mishandling and under-funding research into this disease, the NIH really does needs to ensure that its grants allocations process is fair, robust and transparent - that is if they are to win and maintain the confidence of the patient community, and fulfiul their stated objective of attracting new researchers to the field.

 

[Hajnalka]

Rose you really need to update the money line, people need te see how much/what they give, start crowdfunding! we can't see anything on the OMF site.

People need some visueel crowdfunding as david tuller and Jennifer Brea did..see the money go up..we can tweed / facebook, moved people even day, week, month.

Yes I agree with this. Good idea. It makes it much more of an ongoing campaign and people enjoy seeing the totals rise.

In my view the OMF does successful and professional fundraising (lots of ideas, outreach, how-to-guides and support on the website). There was a video or newsletter about a new record a few months back - if I remember correctly the OMF had managed to raise over one million in a month? The current numbers can be checked on the website.

The problem with a crowdfunding campaign like David or Jen did is, that such a campaign needs a concrete timeframe and goal. We don't have a timeframe, the OMF needs at least 5 million a year until ME is solved. Not sure how a kickstarter campaign could look like in this case. Maybe if e.g. the nano needle proofs to be a valid test and we want to produce it, we could start a crowdfunding campaign for that concrete project. Just my thoughts of course.

Edited to add: I hope Unrest will also help to generate even more donations, because Ron and the OMF are shown.

 

[Janet Dafoe]

@Janet Dafoe (Rose49)

I don't want to tear Ron's attention away from the research any more than is strictly necessary but I hope someone from the Stanford team will write a politely worded - and public - letter to the NIH expressing disappointment that the reasons given for refusing their grant application were demonstrably complete drivel.

It's natural to be disappointed and frustrated when a grant application that you invested a lot of time and energy in isn't successful and a research project that you passionately believe in is jeopardised as a result - but it's really not acceptable for the NIH to justify that decision with reasons that repeatedly contradict the criteria set out in the RFA. After so many years of mishandling and under-funding research into this disease, the NIH really does needs to ensure that its grants allocations process is fair, robust and transparent - that is if they are to win and maintain the confidence of the patient community, and fulfiul their stated objective of attracting new researchers to the field.

Yes. Ron and Raeka wrote a powerful rebuttal that we think was presented to the council.

 

[neweimear]

I think a petition would be good, we can't let this go, this could well be adding years to our suffering. We are all angry but how do we get thru to them...

 

[neweimear]

@Janet Dafoe (Rose49) not an original idea I know but could Ron try phoning Francis Collins, I know he has done so before. Has that man any conscience, I thought he was supposed to be one of the good guys....would it be worth a shot....

 

[TreePerson]

In my view the OMF does successful and professional fundraising (lots of ideas, outreach, how-to-guides and support on the website). There was a video or newsletter about a new record a few months back - if I remember correctly the OMF had managed to raise over one million in a month? The current numbers can be checked on the website.

The problem with a crowdfunding campaign like David or Jen did is, that such a campaign needs a concrete timeframe and goal. We don't have a timeframe, the OMF needs at least 5 million a year until ME is solved. Not sure how a kickstarter campaign could look like in this case. Maybe if e.g. the nano needle proofs to be a valid test and we want to produce it, we could start a crowdfunding campaign for that concrete project. Just my thoughts of course.

Yes OMF do a fantastic job and I and various members of my family support them. But I wasn't aware of where I could go to for a total. I don't think it's ever mentioned in emails and I haven't seen anything like that on Facebook or Twitter. Possibly there is a very good reason for this - eg they don't want to overdo it and be in people's faces.

Sometimes a specific goal or target within the 5 million can galvanise people. I do remember- I think last autumn there was a double your money type thing that ran for a specific period. I think this sort of project is good because it re- involves people and reinvigorate them.

One of the other researchers, it might be the microbe discovery project had regular updates. And I think they were also were looking to raise large amounts.

It was my gut feeling that something like this might be good. I do understand that they need very large amounts much more than is likely to be raised by patients. I'm just trying to be positive. Sometimes one positive thing leads to another.

 

[Hajnalka]

Hi @TreePerson, I agree! Was merely giving my thoughts on tools like kickstarter because the crowdfunding campaigns of David and Jen were mentioned by @lisette.w as examples the OMF should follow - and I thought that these projects are hard to compare. The microbe discovery project was much less effective with fundraising than the OMF from what I remember (tried to check the number, but site says fundraising is still suspended). But I totally agree that it's very important to always be on the look-out for other best-practice examples and have specific campaigns like the double-your-amount. And that we can all contribute with projects, ideas and campaigns.