ME/CFS Collaborative Research Centers & Data Management Center Announcements

[Wonko]

??

All references to Lipkin being sued seem to have been removed from PR but still exist on the net (I checked to make sure I wasn't misremembering)
People seemed fairly upset about it at the time, so I was surprised to see no reaction here - but obviously there is a reason there is no longer any references to it on here, so......

 

[AndyPR]

All references to Lipkin being sued seem to have been removed from PR but still exist on the net (I checked to make sure I wasn't misremembering)
People seemed fairly upset about it at the time, so I was surprised to see no reaction here - but obviously there is a reason there is no longer any references to it on here, so......

You mean apart from this thread? http://forums.phoenixrising.me/index.php?threads/hornig-sues-lipkin.51620/

 

[Wonko]

You mean apart from this thread? http://forums.phoenixrising.me/index.php?threads/hornig-sues-lipkin.51620/

ah - okay - PRs search engine returned no results to my couple of searches, but it does seem to not like me much these days.

 

[neweimear]

So disappointed that Ron Davis got nothing.

 

[Gemini]

http://news.cornell.edu/stories/2017/09/94m-nih-grant-funds-chronic-fatigue-syndrome-center

Good to see EVMED Research i.e., Dr. Chia's enterovirus research is part of the Cornell collaborative:

http://evmedresearch.com/research/publications.php

 

[adreno]

I think overall this is some very good news for us, although I would of course have liked to see certain others funded as well. Hopefully there will be more grants in the future? I am not really up-to-date on the roadmap.

 

[Gemini]

I am a little sad that the OMF / Davis group didn't get anything.

A promising connection, though. Dr. Maureen Hanson of the Cornell Collaborative joined the OMF Scientific Advisory Board directed by Dr. Ron Davis which includes Dr. Naviaux, Dr. Mark Davis, Drs. Fluge/Mella, etc....

https://www.omf.ngo/scientific-advisory-board/

 

[AndyPR]

IiME's comments on the news - http://www.investinme.org/IIMER-Statement-1709-02.shtml

 

[lilpink]

It's good news that we have finally got this far and the 3 research centres look like worthy winners.

Let's hope they stick to strict criteria such as ICC otherwise all the tea in china won't make a difference.

 

[Jo Best]

IiME's comments on the news - http://www.investinme.org/IIMER-Statement-1709-02.shtml

Now today we can comment publicly on the announcement of the plans and awards from the National Institues of Health (NIH) for similar Centres of Excellence.

This takes the same approach as IiMER.

We are very hopeful of this development and have already made connections to people to facilitate the research.

We welcome NIH's 'Dr Vicky Whittemore's earlier public support for Invest in ME Research's work to establish the UK Centre.

We must also remember the NCNED in Australia which has a Centre up and running.


http://www.investinme.org/IIMER-Statement-1709-02.shtml

 

[duncan]

I'd likely feel more enthused if they could manage a better disease definition in the announcement.

 

[lilpink]

I trust Invest in ME to properly keep an eye on this sort of activity (phew!). I know many US advocates are (quite rightly imo) concerned that the orgs supporting this initiative in the US aren't necessarily up to speed on the use of appropriate criteria and seem to conflate authentic ME with other fatigue states. @Jo Best : are you able to confirm that Invest will ensure that the correct criteria for accessing patient participants will be correct please (ie: ICC)?

 

[Jo Best]

@Jo Best : are you able to confirm that Invest will ensure that the correct criteria for accessing patient participants will be correct please (ie: ICC)?

Do you mean for the UK Centre?

 

[Sean]

I'd likely feel more enthused if they could manage a better disease definition in the announcement.

Yeah, I am not too pleased with that either.

 

[shannah]

Does anyone know the total dollar figure of these projects?
I haven't yet seen it but I do see $ 10.6M + $ 9.4M + $9.4M

 

[neweimear]

That's over 5 years

 

[shannah]

That's over 5 years

Yes I know. It seems there's one amount missing. I haven't been able to find it yet.

 

[lilpink]

Do you mean for the UK Centre?

Sorry I was being obtuse. I meant more in terms of their already having made connections and thus having some opportunities for the 'right conversations' about cohort selection.

 

[Jo Best]

Sorry I was being obtuse. I meant more in terms of their already having made connections and thus having some opportunities for the 'right conversations' about cohort selection.

Ah yes, I think you're right that those discussions have taken place over the years that these ideas and initiatives, and the research itself, have been evolving, face to face at the Biomedical Research into ME Colloquium and through contacts made and ongoing throughout the year. As you know, Vicky Whittemore from NIH has attended for the past two years, and the request for input from the community in her 2016 presentation (IIMEC11) was well received and responded to, which she commented on at IIMEC12. Beth Unger from CDC was also there this year.

I haven't looked at the research proposals in detail but I'm guessing that most of the centers have cohorts already identified and samples stored?

As for collaboration with the UK Centre, Mady Hornig visited Norwich autumn 2015 and one of the medical students funded to be involved in the UK gut microbiota research spent three months working with Maureen Hanson at Cornell.

 

[ballard]