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Dear Dr Collins, Can the NIH spare a few dimes? by ex Washington Post journo with ME/CFS

Simon

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Bob said:
The letter is attracting positive attention from some high profile and senior journalists, and others with huge followings on Twitter:
https://twitter.com/carlzimmer/status/620972261244280832
...
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Wow, sterling research - thanks so much for this. And it's very encouraging: these are just the sort of people we need on our side. Carl Zimmer (235k followers, and probably the leading science journalist in the world) tweeted:
A writer felled by myalgic encephalomyelitis (aka chronic fatigue) asks @NIHDirector to stop neglecting the disease
Click to expand...

user9876 said:
My point is as well as campaigning on big targets we should also offer simple steps that can be taken. That way we may get somewhere.
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Well put.

viggster said:
Hi...Brian here. Thank you for all the kind words and for sharing the letter. I've been told Dr. Collins read it and will be responding...we'll see.
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viggster said:
Sure, I'd love a billion dollars a year set aside to help cure us all. But that's not going to happen tomorrow. It will take time to build up support within NIH for a robust ME/CFS program. Doubling or quadrupling funding would be huge
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viggster said:
I think it's even more important that prominent scientists like Ron Davis are lobbying Dr. Collins. This feels like the time when NIH may just move its concrete feet. Here's hoping....
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Can't thank you enough for your appeal and follow up.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Hi Brian - brilliantly, brilliantly well done!

viggster said:
And I made it clear to my contacts in Dr. Collins' office that if they make such a move, every science and medical reporter in the world will know about it. I spent 15 years getting to know many people in the business, and I made a lot of friends. Positive media coverage is important to the people at the top of NIH, and so I hope that this carrot-with-implied-threat-of-stick approach helps make something happen.
Click to expand...

I think this is tremendously important - that you've got contacts and know how to use them and what to tell them to get Director Collins motivated.

Worth a thousand petitions.
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Many more journalists are tweeting:
https://twitter.com/dbiello/status/621043871477329920
https://twitter.com/kerrsheridan/status/621037150507634688
https://twitter.com/tidepoolsinc/status/621034807129149440
https://twitter.com/DanFerber/status/621034463233986560
https://twitter.com/Barry_Yeoman/status/621026632862556160
https://twitter.com/calebhell/status/621047593687195653
https://twitter.com/juadams/status/621012729420247040
https://twitter.com/ktsword/status/621011708417544192
https://twitter.com/mlavelles/status/621001103841361920
https://twitter.com/avbubnoff/status/620994309177909249

Edited to add more:
https://twitter.com/martinenserink/status/621055910044139520
https://twitter.com/brady_dennis/status/621060484771545090
https://twitter.com/Reinlwapo/status/621050718951198721
https://twitter.com/tdechant/status/621051193083719680
 
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5150

5150

Senior Member
Messages
360
NIH aka USGovt, seems to have plenty of money for MS.
As it seems that's where I'm heading anyway, maybe just check in as a Multiple Scars patient.
It seems that's what will satisfy them; anything not to pay for ME abuse for all these years.

But desperate people will do desperate things, including eating crumbs from the Master.

Thanks viggster for trying something new, Anything. We shall see where this goes.
 
catly

catly

Senior Member
Messages
284
Location
outside of NYC
@viggster Thank You for this, wonderful appeal! @Bob thanks for the links to the retweets--I retweeted them all, followed all of the tweeters and tweeted to a few of my favorites (21st century cures reps Fred Upton, Diana DeGette, my senators/rep, Morgan Fairchild etc.)

I hope that this letter along with @leokitten 's email to Dr. Collins help get some attention--God knows he never responds to me even though I tweet him several times a week.
 
beaker

beaker

ME/cfs 1986
Messages
773
Location
USA
I took one of the journalists' tweets that I liked( I thought that if they saw someone from press covering it would lend more incentive to get involved) and retweeted it to all Senators and House Reps that are on health and appropriation committees and Congressional leadership positions. As well as POTUS and my own reps.
It's one thing to retweet to your followers, but we need people in a position to help to hear us.
Time to strike while iron is hot !!!
Please consider retweeting Brian's own letter or one of the journalist's covering it on twitter to your reps and to the appropriate members.
Here are members that should be tweeted to -- you can cut and paste.It doesn't take much once you have this contact info. I grouped them according to how they would fit and as I went through committees. Some day I will organize out the committee members if you want that info but no ability now. You will have to add your own reps
PS if you prefer email, if you click on their name it will take you to their twitter page and usu. they have a web link w/ that kind of contact info.


@RepTomPrice @VernBuchanan @RepAdrianSmith @RepLynnJenkins @RepKenMarchant @RepDianeBlack @RepThompson @RepRonKind

@repblumenauer @BillPascrell @RepDannyDavis @RepComstock @RepLipinski @RepFrankLucas @RepMcCaul @RepHultgren

@RepMoolenaar @RepWesterman @RepNewhouse @USRepGaryPalmer @RepAbraham @RepEsty @RepKClark @RepPaulTonko @RepBonamici

@RepSwalwell @RepChrisCollins @RoyBlunt @JerryMoran @SenatorDurbin @SenShelby @SenThadCochran @LindseyGrahamSC

@BillCassidy @SenCapito @SenatorLankford @SenJackReed @SenatorShaheen @SenJeffMerkley @SenBrianSchatz

@RepScottRigell @RepBarbaraLee @chakafattah @RepKevinBrady @RepJimMcDermott
@SamsPressShop @DevinNunes @PeterRoskam

@SenGillibrand @SenSchumer @SenSanders @SenAlexander @PattyMurray @SenatorBurr
@SenatorCollins @SenWarren

@RepRoybalAllard @CongMikeSimpson @rep_stevewomack @RepChuck @RepAndyHarrisMD @RepMarthaRoby @RepCharlieDent

@SenateMajLdr @SenatorReid @VP @GOPLeader @SteveScalise @NancyPelosi @WhipHoyer @TomColeOK04 @rosadelauro

@lisamurkowski @SenatorEnzi @SenatorBarb @SenBobCasey @SenatorIsakson @RandPaul
@alfranken @SenBennetCO @SenatorKirk

@POTUS @SenWhitehouse @SenatorBaldwin @SenatorTimScott @ChrisMurphyCT @SenOrrinHatch @PatRoberts @BillCassidy
 
beaker

beaker

ME/cfs 1986
Messages
773
Location
USA
Bob said:
Many more journalists are tweeting:
https://twitter.com/dbiello/status/621043871477329920
https://twitter.com/kerrsheridan/status/621037150507634688
https://twitter.com/tidepoolsinc/status/621034807129149440
https://twitter.com/DanFerber/status/621034463233986560
https://twitter.com/Barry_Yeoman/status/621026632862556160
https://twitter.com/calebhell/status/621047593687195653
https://twitter.com/juadams/status/621012729420247040
https://twitter.com/ktsword/status/621011708417544192
https://twitter.com/mlavelles/status/621001103841361920
https://twitter.com/avbubnoff/status/620994309177909249

Edited to add more:
https://twitter.com/martinenserink/status/621055910044139520
https://twitter.com/brady_dennis/status/621060484771545090
https://twitter.com/Reinlwapo/status/621050718951198721
https://twitter.com/tdechant/status/621051193083719680
Click to expand...

Good idea to go back and thank these reporters in the next few days. I'm done for now. But will do so later.
Thanks for keeping track Bob.
 
Snow Leopard

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I agree with the thrust of the letter, but we need to be a bit clearer with the arguments, since what we are really asking for is not merely more money, but something else.

When we have previously asked for more money, the people at the NIH have retorted, oh we would give out more money, but there aren't enough high quality applications. But we know that this simply isn't true when you have the likes of Ian Lipkin, or the researchers at Stanford who want funding from the NIH, but don't get it. This needs to be explicitly stated when promoting the funding argument - that the best researchers in the world are applying and are being knocked back for studies that would have been funded if they were for another less stigmatised condition.

But the reason why there aren't enough high quality applications is two fold - the first is that there is a dire lack of research capacity in the first place. Lack of progress discourages others from joining the field. The second is that when researchers do apply for funding, they almost always get knocked back anyway - why bother spend lots of time designing experiments, writing applications when you are just going to get knocked back. Much easier for your career if you work in a field where you are twice as likely to get funding.

We need to tell them that the NIH needs to take an active focus to break this catch-22 and build research capacity of a magnitude of order greater than what is currently done.
 
B

barbc56

Senior Member
Messages
3,657
Bob said:
Ah, yes, I should have mentioned that. I'm sure you're not the only person who isn't familiar with Twitter. Thanks for mentioning it, Barb. :thumbsup:
Click to expand...

Well gosh darn it @Bob

I swear I read in one of your posts that you know how to read minds! May I assume you have lost that ability?:lol:

I really need to learn how to tweet. I never thought I would need to learn how. Is there a Tweet For Dummies book and if there's a downloadable verson?

Off to check this.

Barb

ETA
Actually, the tweets posted have been fairly easy to read. If there are a lot of ###s, I'm lost!
 
Kati

Kati

Patient in training
Messages
5,497
Bob said:
The letter is attracting positive attention from some high profile and senior journalists, other public figures, and others with huge followings on Twitter:
https://twitter.com/carlzimmer/status/620972261244280832
https://twitter.com/stevesilberman/status/620964071949516800
https://twitter.com/hristio/status/620873435191730176
https://twitter.com/bmahersciwriter/status/621016016085209088
https://twitter.com/marynmck/status/621014430281633792
https://twitter.com/maggiemfox/status/620994117468688384
https://twitter.com/mkonnikova/status/621029472217747456
https://twitter.com/ychernova/status/621002929600888832
https://twitter.com/kaleekreider/status/621006344477237248
https://twitter.com/deborahblum/status/620969495373434880

Here's Brian's tweet, in case anyone wants to retweet it:
https://twitter.com/brianvastag/status/620993700424867840
Click to expand...
Thank you Bob, a post like that is so easy to use if you have a twitter account. Just click on each individual links and click on 'retweet'. of course it is much more powerful if you have a bigger number of followers.
 
Kati

Kati

Patient in training
Messages
5,497
viggster said:
Hi...Brian here. Thank you for all the kind words and for sharing the letter. I've been told Dr. Collins read it and will be responding...we'll see. As for asking for too little - well, as a journalist, I was always deeply pragmatic. When you have two hours to write a story, you don't go for *greatest story ever*, you do what you can with the time and resources you have. I do think that the most important step now is for NIH to give responsibility for ME/CFS to one of the institutes and to publicly come out and say, We're doing something about this. Sure, I'd love a billion dollars a year set aside to help cure us all. But that's not going to happen tomorrow. It will take time to build up support within NIH for a robust ME/CFS program. Doubling or quadrupling funding would be huge. And I made it clear to my contacts in Dr. Collins' office that if they make such a move, every science and medical reporter in the world will know about it. I spent 15 years getting to know many people in the business, and I made a lot of friends. Positive media coverage is important to the people at the top of NIH, and so I hope that this carrot-with-implied-threat-of-stick approach helps make something happen. I think it's even more important that prominent scientists like Ron Davis are lobbying Dr. Collins. This feels like the time when NIH may just move its concrete feet. Here's hoping....
Click to expand...
Brian, thank you so much for sharing your story publicly and using your contacts. It is so important to reach out to the circles of influence.

It can also be quite difficult for some people to 'come out' especially when there is so much stigma surrounding this disease. I command you for your bravery and your effort.

i am sharing widely and have also added you on twitter. (@katiissick)

Best wishes and please let us know if you get an answer.
 
searcher

searcher

Senior Member
Messages
567
Location
SF Bay Area
Snow Leopard said:
This needs to be explicitly stated when promoting the funding argument - that the best researchers in the world are applying and are being knocked back for studies that would have been funded if they were for another less stigmatised condition.
Click to expand...

I know I am biased but isn't that the crux of the argument in the letter? He talks about the fact that Columbia gets $150 million in funding for other illnesses, with much of the money going to CII, yet Lipkin couldn't get $1 million for ME research and had to eat habaneros to raise money. And he talks about Ron Davis being a prominent geneticist who is searching for genetic connections.
 
Snow Leopard

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
searcher said:
I know I am biased but isn't that the crux of the argument in the letter? He talks about the fact that Columbia gets $150 million in funding for other illnesses, with much of the money going to CII, yet Lipkin couldn't get $1 million for ME research and had to eat habaneros to raise money. And he talks about Ron Davis being a prominent geneticist who is searching for genetic connections.
Click to expand...

Yes it was mentioned, and the rest of us need to take note and regularly mention it as the primary argument...
 
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