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

[SDSue]

Hmmm. I got an account, verified the account, and am unable to comment or “like”. any ideas?

 

[Nielk]

Hmmm. I got an account, verified the account, and am unable to comment or “like”. any ideas?

Did you verify from your email account?

 

[Sasha]

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.

Actually I didn't get the impression that that was the issue (surprisingly!). It seemed more that some people couldn't get their heads around the idea that it was OK for us to ask for anything when other neglected diseases didn't have a journalist of their own.

There was some very strange thinking going on there.

But I didn't see a single comment questioning the seriousness or severity of the disease (a first, in my decades of experience!).

 

[Sushi]

Three browsers and none of them will load comments

I had to create an account to see the comments. You can do this by clicking on Sign In -- as opposed to subscribing.

 

[Sasha]

I tell you what, this WashPo thing has totally restored my faith in human nature. Another lovely comment from an innocent bystander:

An eloquent article with so many hard factual references it would seem irrefutable that this disease merits intensive and directed attention. The very fact that the NIH "parked" a disease which afflicts maybe a million Americans including hundreds of thousands of men, in women's health issues sadly demonstrates how thoroughly they have failed to take it seriously.

I do not have ME but I know far too many people who, like Mr. Vastag, could be making and desperately would like to be making meaningful contributions to our economy and society, but instead struggle to sit upright or take care of their families, and hope for disability to get by. (Difficult because the disease is so poorly recognized.)

I know others who have exhausted all of their resources trying to find medical help for their situation, to be treated with disdain and disbelief, as if they are just too lazy to get up or somehow emotionally chose to throw away their productive life. I hope that Dr. Collins and the NIH take notice.​

 

[halcyon]

Actually I didn't get the impression that that was the issue (surprisingly!).

I think if people understood the true severity of the illness they wouldn't be asking why it deserves more funding. I think only patients or their caregivers understand how truly devastating it is. This is almost impossible to relate to healthy people. I'm very curious to see how the various ME films coming out might change this.

It seemed more that some people couldn't get their heads around the idea that it was OK for us to ask for anything when other neglected diseases didn't have a journalist of their own.

Yes, that was an interesting response as well. Not one I would have expected.

 

[Sasha]

96 comments now.

 

[Sasha]

I think if people understood the true severity of the illness they wouldn't be asking why it deserves more funding.

Seriously (and weirdly) I really, really don't think that's it - and it's hugely surprising to me because it's almost always it. I think if people thought this wasn't serious they'd be saying so - but they're not. Not one single person. At all. I'm really blown away by it.

 

[Bob]

Stanford Medicine has Tweeted to its 117k followers:
https://twitter.com/StanfordMed/status/623248340344569856

 

[Nielk]

100 comments!

 

[Kati]

Tweeted, retweeted, commented, shared, and favorited.

Well done everyone. But let's keep the momentum going!

 

[viggster]

I have to say after seeing the comments section on hundreds and hundreds of Washington Post articles, this is the first comment section that has remained civil, logical, and kind. Most comment sections are like online trash fires. You are all amazing!

 

[SDSue]

Did you verify from your email account?

I did.

 

[Sushi]

Hmmm. I got an account, verified the account, and am unable to comment or “like”. any ideas?

I had the same problem. Discovered I had to make a user name but it wasn't obvious from the communications they sent me.

 

[Sasha]

I have to say after seeing the comments section on hundreds and hundreds of Washington Post articles, this is the first comment section that has remained civil, logical, and kind. Most comment sections are like online trash fires. You are all amazing!

It's the first comments section like that that I've ever seen and I thought it must be a WashPo thing but clearly, it was us! Medals all round!

 

[Sasha]

Just catching up on the latest comments - excellent one from Firestormm and others.

Someone posted again about how Brian shouldn't be asking Congress for a bigger NIH budget (which he wasn't) so I responded, pushing the idea again that it's about fairness.

The maths is interesting (and this is a bit of a thing with me, this false idea that we need a bigger pie rather than a fair share of the existing one) so people here might like to see it:

Although patients are hoping that 21st Century Cures Act will be passed -- giving NIH an extra $8.75 billion over five years - the NIH budget is already $30.3 billion:

http://www.nih.gov/about/budget.htm

ME/CFS currently gets $5m a year --- 0.017% of that total budget - and Brian is proposing $10m to $20m a year -- 0.033% to 0.067%.

This doesn't require new funds from Congress. All it needs is fairer distribution of the pot. If the 244 other disease and research areas each took a 0.067% shave -- lost a 1/1500th of their budget -- they'd find it hard to notice the difference but the resulting $20m boost to ME/CFS would be transformative.

Even the $250m annually that would put us on a per-patient par with MS would only be a 8/1000th shave for the other 244 categories.

Our scientists have superb research programmes ready to go and are stuck because we can't get these crumbs from the table.

We're asking for our fair share, proportionate to our numbers and the severity of our disease. We don't even need a bigger pie: just a fair share of the pie that already exists.​

It's always worth remembering that even if the NIH pie shrunk - even if it was cut to a tenth of what it is now - if we got our fair share, we'd have a huge, huge increase in our budget.

 

[Sasha]

I'm wondering if it's this notion of the 'fair share' and 'funding equality' that has made our case so unanswerable this time around (and has therefore kept the debate so civil). I know we've pushed for more $$$ before, but have we presented it on the equality angle quite so strongly before?

 

[Bob]

New Tweets by Journalists. (Some of these are slightly older Tweets that I hadn't previously noticed.) I've added them to the reference list.

Washington Post journalists:
https://twitter.com/aolivo/status/623470634245484544
https://twitter.com/lauriemcginley2/status/623114599030747136
https://twitter.com/MrDanZak/status/623109904014921729
https://twitter.com/bylenasun/status/623104105653927936

Other journalists & commentators:
https://twitter.com/kirkenglehardt/status/621400235173150720
https://twitter.com/Lisa_Palmer/status/621370458378739713
https://twitter.com/jtozz/status/621343391205453825
https://twitter.com/flowill/status/621318191529218048

This is the person's second Tweet about the subject (The earlier Tweet is in the reference list on the other thread):
https://twitter.com/juadams/status/621003179132645376

 

[mango]

I had the same problem. Discovered I had to make a user name but it wasn't obvious from the communications they sent me.

is user name different from "display name"? i've entered a display name and verified my email address. i can't figure out what's wrong, it still won't let me 'like' comments...

 

[Nielk]

is user name different from "display name"? i've entered a display name and verified my email address. i can't figure out what's wrong, it still won't let me 'like' comments...

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