Action alert: Brian Vastag's appeal to the NIH is in the Washington Post - HELP BOOST IT!

[Sasha]

I am amazed at the comments saying that it is audacious to ask for funding for a specific, personal disease. Who are these people???

There are some very weird comments there but they're so clearly weird that most of them are actually doing us a favour.

 

[searcher]

Those comments are weird and remarkably short-sighted. Are the commenters attacking Michael J Fox for advocating for Parkinson's Disease to be consistent? They probably were the people criticizing AIDS patients in the 1980s for fighting for recognition and research.

 

[Sasha]

A lovely comment just now (which I am 'liking')

I can relate to your disease as my father died from the complications of MS. Your plea for NIH to devote funds for research of your disease would probably produce a drop in the bucket compared to the various efforts currently underway as you so thoroughly described. Keep up the faith.​

 

[Sasha]

Remember, folks, 'like' the good comments to make sure they come up on the appropriate sort filter.

 

[Sasha]

I see Brian is on there now and has made some excellent comments.

Nice going, @viggster!

 

[Sasha]

BTW, remember that older comments will sink to the bottom. We want good comments at the top so keep up the supply!

 

[leela]

Three browsers and none of them will load comments
ETA: Ad blocker needed to be turned off, sharing in case this happens to others.

 

[Sasha]

Three browsers and none of them will load comments

 

[Nielk]

Three browsers and none of them will load comments

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[Bob]

More Tweets from journalists, one of whom has a following of 17k:
https://twitter.com/mattbai/status/623176900643528704
https://twitter.com/JasonTron/status/623173196762771457

Three tweets from same journalist:
https://twitter.com/JenHoward/status/623171041641279488
https://twitter.com/JenHoward/status/623171376757796864
https://twitter.com/JenHoward/status/623171610774777857

I've added them to the reference list on the other thread:
http://forums.phoenixrising.me/inde...t-journo-with-me-cfs.38703/page-3#post-618823

 

[Sasha]

64 comments so far - and a generally good discussion.

 

[Sasha]

About 40 different people have commented.

 

[Never Give Up]

I'm liking, but can't think of anything to say that hasn't been said...

 

[Never Give Up]

And I must say, this is the first time I have seen an ME article and comment section with NO mention of psychosomatic or character defect finger pointing.

Thanks to @viggster for leading the way in not creating and perpetuating false illness beliefs in the readers' minds.

 

[viggster]

Thank you for promoting this!

 

[Sasha]

Thanks for writing it, Brian! Just a fantastic letter.

Thanks very much to everyone who has commented so far - everyone has done a superb job. Very civil, rational, calm discussion (on our side, at any rate - which is what counts!).

 

[Kyla]

I'm liking, but can't think of anything to say that hasn't been said...

I don't think there is anything wrong with reiterating things that have already been said, especially since the comments by default are sorted by "most recent".

Also, not many links up there as we all thought you couldn't link initially.
Eg - Could link to charities, OMF, OMI, the IOM report, Stanford ME/CFS, - whatever you think is a good source of info about ME

 

[searcher]

I also think comments focusing on the need to move ME research from the Office of Women's Health to NINDS would be helpful.

 

[Sasha]

I also think comments focusing on the need to move ME research from the Office of Women's Health to NINDS would be helpful.

Yes - that's a hugely important point - this isn't a women's disease, for starters - and it hasn't really been picked up.

 

[halcyon]

Some interesting comments in there. Particularly the ones asking (rhetorically mostly) why ME deserves more funding vs. other diseases. I think the severity and debility of this illness is still very much not clear to the average person.