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Science Mag - Lobbyists seek new funds for chronic fatigue syndrome research

Bob

Senior Member
Messages
16,455
Location
England (south coast)
ME Action (set up by Jen Brea) is making waves.

Lobbyists seek new funds for chronic fatigue syndrome research
By Emily Underwood
17 August 2015
http://news.sciencemag.org/biology/...n-new-funds-chronic-fatigue-syndrome-research

Extracts:
Patient advocates and scientists joined forces today in a new campaign to boost research funding for the mysterious and debilitating disease chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). The group aims to increase research funds available for CSF/ME from the $5.4 million annually available today. It also wants to transfer responsibility for the disease from an isolated office within the U.S. Department of Health and Human Services (HHS) to the National Institute for Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH).
We really need NIH to fund research in this area—there’s a lot of critically ill patients,” says Ronald Davis, a biochemist and geneticist at Stanford University in Palo Alto, California, and one of the signatories in an open letter to U.S. senators affirming the need for more CSF/ME funding.
ccording to the lobby group, #ME Action, NIH has long justified its relatively low funding for CSF/ME research by citing a paucity of interest among scientists in the disease, and too few high-quality grant proposals.
Read more: http://news.sciencemag.org/biology/...n-new-funds-chronic-fatigue-syndrome-research
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Some horrible comments on that page. Some person thinking the disease can be cured by sending patients to a military training program. :rofl:

The article allows comments?

How convenient, because I have written a static page about how to comment on online articles, which is all about how to do it with dignity, grace, and impact, and get out the messages that we want (such as the desperate need for funding).

It also explains how to deal with trolls and fools of the 'just go to a boot camp' variety. Basically, just talk right over their heads - we're addressing reasonable people, who are our target audience.

As a community we did a spectacular job in the online comments on Brian Vastag's article in the Washington Post - the most civil comments section there ever, according to Brian!

We must use these comments sections to win hearts and minds.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
The comments on the article are off to a bit of a shaky start. It would be great if people could post some sensible, positive ones and mark 'up' the good comments.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
It would be nice if a few more people posted comments on the article to thank the journalist and say what an important topic this is.

It's a great article and the journo has done us a massive favour by linking to the scientists' letter. :)
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
You can also email the journalist, to thank her, but I suppose we shouldn't bombard her with lengthy emails.

Better to make a public display of it in a comment, I think - nicer for her, and something to show her editors.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
...also, it helps in setting a nice and respectful tone for discussion and makes it feel like a safer place for people.

There's a troll on that thread who has been encouraged, I think, by people replying directly to his posts and engaging with him, even though their posts are reasonable, so he's still posting and trying to get attention.

Far better to ignore him and address the audience of reasonable (not to mention, sane) people who will be reading that article.
 
Messages
15,786
There's a troll on that thread who has been encouraged, I think, by people replying directly to his posts and engaging with him, even though their posts are reasonable, so he's still posting and trying to get attention.

Far better to ignore him and address the audience of reasonable (not to mention, sane) people who will be reading that article.
Oh, I wasn't really responding to him, even though I was responding to his comments. I know he can't be reasoned with, but it's still a nice opportunity to insert a couple strong tidbits of information for the general public. And to demonstrate that we're rational, polite, and well-informed, even when responding to a blatant turd :cool:

He's also a bit of an odd case because most of his posts on other subjects aren't really troll-like, and he has a lot of followers on Disqus.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Oh, I wasn't really responding to him, even though I was responding to his comments. I know he can't be reasoned with, but it's still a nice opportunity to insert a couple strong tidbits of information for the general public. And to demonstrate that we're rational, polite, and well-informed, even when responding to a blatant turd :cool:

I understand your point and agree that he's a blatant turd but I suspect that he's been encouraged by the attention and has kept on posting, so that his posts now dominate that conversation. I realise that you were in a sense talking over his head but he'll have seen that you hit the 'reply' button on his posts and he'll have been rewarded by the engagement.

I didn't mean to point the finger at you though, Val! You're not the only one who replied to him and I know that people do it because they hope to persuade others. But it's so easy to make the same points directly to the wider audience without replying to a troll, with none of the downside.

I'm also concerned that while some people can address him without getting angry, others will see others responding and feel they should also pile on - but be less skilled at controlling themselves.

Just my view, though. :)