Applicants needed for Columbia ME/CFS Research Center Community Advisory Committee

Andy

Andy

Retired committee member
The Columbia University Center for Infection and Immunity is seeking applicants for the Community Advisory Committee for their Collaborative Research Center – The Center for Solutions for ME/CFS.

The Center for Solutions for ME/CFS (CfS for ME/CFS) is a multi-institutional, inter-disciplinary research center dedicated to understanding the biology of ME/CFS and developing diagnostic tests and methods for preventing and treating disease. It builds on decades of work by a network of expert clinicians and laboratory scientists with expertise in epidemiology, infectious disease, immunology, genetics and biochemistry, as well as a large cohort of well-characterized patients and biological samples. Our efforts will be linked with those of other Collaborative Research Centers and guided by close interactions with the ME/CFS community.

The Center, directed by W. Ian Lipkin, is conceptualized as a “center without walls.” The administrative core of the Center is housed in the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health. Scientific and clinical activities comprise three distinct but interrelated projects. Key Center faculty and staff include Dana March (Columbia, Deputy Director, Administrator, Co-Investigator project 3); Oliver Fiehn (UCD, Co-Lead, Project 2); John Greally (Einstein, Co-Lead, Project 2); Anthony Komaroff (Harvard, Lead, Project 3); clinical Co-Investigators for Project 3, Lucinda Bateman (Bateman Horne Center), Daniel Peterson (Simmaron), Susan Levine (Private Practice), and José Montoya (Stanford); and Paul Newswanger (Columbia, Project Coordinator).

The Community Advisory Committee, the Scientific Advisory Board, and the Internal Executive Committee will advise Center activities.
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http://microbediscovery.org/2018/06...-research-center-community-advisory-commitee/
 
Join the Solve ME/CFS Initiative as part of the Community Advisory Committee for The Center for Solutions for ME/CFS at The Columbia University Center for Infection and Immunity.
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Please do check out the application form. Also important to note – working groups can include participants that do not have to be part of the core CAC. A wide variety of experience and/or skills are being sought after. You do not have to be based in the USA!
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https://solvecfs.org/the-center-for-solutions-for-me-cfs-at-columbia-university-seeks-applicants/

I've not properly read through but the text looks to be the same as in the original link.
 
Snow Leopard said:
"References" sigh.

One of the possible boxes of "experience" is severe ME, but how would someone who has had severe ME have the social/professional network to have such references on close hand?
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It does say "For additional questions, please contact Paul Newswanger via email at pdn2107@cumc.columbia.edu or phone at 212 342 3005.", so there is a way to pose questions.
 
Andy said:
Your point being?
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Point? I have no point. I have cognitive dysfunction though :D

If they are looking for patients i could i suppose put down my doctor, who probably won't take a call from them, and not being in a medical profession i don't have relevant people to list as references. Also being unemployed quite a while my references from when i was working in an unrelated field have moved on a while ago or retired :emoji_confused:
 
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The Microbe Discovery Project FB just posted this:

"CII need more applications for their ME/CFS Community Advisory Committee. Experience in epidemiology is a particularly important area of need. Please share widely and reach out to folks you know that have this experience. Open to people outside of the USA!!"
 
Well, I tried to get some confirmation on what references where wanted. I was able to find out unofficially that the intention wasn't to ask for professional references, although obviously some people who might still be able to work or who are only recently out of work might have useable professional references. The intention was more to obtain personal references, which potentially could be other patient advocates that you might have 'worked' with.

However, it's been over a week without any response, and the deadline has now passed, so it's a bit besides the point now. I'm afraid at the moment I'm less than impressed with CII's patient engagement efforts in this regard.
 
Andy said:
Well, I tried to get some confirmation on what references where wanted. I was able to find out unofficially that the intention wasn't to ask for professional references, although obviously some people who might still be able to work or who are only recently out of work might have useable professional references. The intention was more to obtain personal references, which potentially could be other patient advocates that you might have 'worked' with.

However, it's been over a week without any response, and the deadline has now passed, so it's a bit besides the point now. I'm afraid at the moment I'm less than impressed with CII's patient engagement efforts in this regard.
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I also e-mailed and asked about that to no response :emoji_face_palm:
I did put down some personal references, so if thats what they wanted thats great but i agree that they are not making this easy :emoji_rolling_eyes:
 
Andy said:
However, it's been over a week without any response, and the deadline has now passed, so it's a bit besides the point now. I'm afraid at the moment I'm less than impressed with CII's patient engagement efforts in this regard.
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That's disappointing, I appreciate the effort you went to though!

I put in an application last week, but haven't yet had a response saying they're reviewing the applications yet. (only the automated reply)

Best of luck to everyone here who applied!
 
Hi everyone, just letting anyone who has applied and is wondering what is going on with this, I have heard no decisions have yet been made and things are going to start to get underway this month.
 
Snow Leopard said:
Hi everyone, just letting anyone who has applied and is wondering what is going on with this, I have heard no decisions have yet been made and things are going to start to get underway this month.
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I was thinking about this yesterday but didn't have the cognitive fortitude to look it up so thanks for bumping this thread :)
I have also heard nothing and they never replied to my question that i had sent before applying.
All dark all round :(
 
Snow Leopard said:
"References" sigh.

One of the possible boxes of "experience" is severe ME, but how would someone who has had severe ME have the social/professional network to have such references on close hand?
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Wouldn't S4ME members count as references? :angel: This is the closest I've come to a professional network in a while, anyway. And it's certainly relevant to the position!
 
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