USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center

Provided they get the funding they needed.

 

Just like nuclear fusion. 50 years ago it was 30-50 years away. Then budgets dropped and kept dropping until almost nothing and we are still 30-50 years away. A reasonable budget would be to spend annually what is spent on the whole ITER project, we are not even close to adequate fusion research funding and, surprise, have not made much progress.

Not trying generally leads to not succeeding. There are exceptions but for hard problems it almost always holds up. Here over the years not trying explains at least 90% of the failure by now, and growing over time. Ironically this is exactly what we are blamed for, that we are not magically cured by CBT because we are not trying. Because one thing you can always count on with this damned disease is that no matter the level of injury, there will always be a much larger heap of insult on top of it.

 

Apparently the video has been pulled. I hope all were able to watch it.

 

Shoot. I should have grabbed the full transcript when I was at it, but the weekend was really rough so I took a shortcut. This is all I have

I guess the above might have been slightly controversial!

Did anyone else manage to capture the full transcript?

 

I didn’t get a chance to watch, but I was very curious about the comments about a promised amount of funding. That seemed odd to me. Does anyone know what promise he’s referring to?

 

I remember that he was lobbying hard for funding before the centers were announced. I remember Ron saying a minimum of $5M a year for 5 years was really needed to support a team to do the work - and this number would approximately tie in with the 20% or so number Lipkin quoted..

Also before the centers, Lipkin used to talk about all the samples he had stored but no funding to process all of them. So I was interested yesterday to read this from @Simon M
https://twitter.com/user/status/1206552226547871744


Reading between the lines (and it's a pure guess, might be wrong) it looks like he doesn't have funding to process his own samples so is now making them available to others. Link to @Simon M post
https://www.s4me.info/threads/news-from-nih-me-cfs-webinar-october-17-2019.11766/#post-224981

I'm worried the same thing will happen to other researchers who have large bio-repositories with disease comparison but no funding as yet. As these samples age, who knows what effect that will have.

 

It’s the statement about a promise that concerns me. When the RFA stating the amount of funding was announced, Lipkin would not have even submitted a proposal. I’m concerned about promises being made behind the scenes.

 

I wondered the same thing, but it's impossible to know. Even if this discussion of funding were the reason the video was pulled, Dr. Lipkin may have been the one who asked that it be pulled.

 

CDC states Lipkin pulled the video due to it containing unpublished information
https://twitter.com/user/status/1207026488932884480

 

Ian Lipkins team has posted that the video is back up

https://twitter.com/user/status/1207404152944381955

https://www.youtube.com/watch?v=SViPfk_OGGg

 

A new website has been launched, which includes their videos and a blog, https://cfsformecfs.org/

 

https://twitter.com/user/status/1240685132090138628


Short version : No answers yet but trying to map metabolites to symptoms.

 

https://twitter.com/user/status/1242989408883785728

 

Direct link to transcript, https://cfsformecfs.org/2020/03/25/a-microbe-hunter-turns-to-me-cfs/

 

A short update - one paper submitted another in process
https://twitter.com/user/status/1255567714724253696

 

What We Do

https://www.publichealth.columbia.e...y/research/center-solutions-me-cfs/what-we-do

 

Not sure how new this list is?

 

Strangely, this was never published as far as I'm aware. It's a shame because I don't know a study of it's type has been performed before.

 

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