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

[Bob]

lol @Kati ... it took me a while to work out what @mfairma was pointing out... It's a typo... Kati meant to say 'commend' not 'command'!

 

[Bob]

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.

Even 'favouriting' the tweet (or I guess it's 'favoriting' if a US person) shows the person tweeting that there is interest in this subject. So if you have an account, it would be great if we can all favourite and/or retweet each of the tweets that I've linked to. It's easy to set up a Twitter account if you haven't got one. But a warning: Twitter can be quite a distraction once you get the hang of it! (But, obviously that's not a bad thing if one is stuck in bed or on the sofa all day!)

 

[Bob]

For the Twitter uninitiated, you can watch out for new tweets about a specific subject by using a search term. The following link will take you to a search page that shows you all new tweets mentioning 'brianvastag', which is where I've been getting all the tweets from that I've posted in this thread:
https://twitter.com/search?q=brianvastag&src=typd&vertical=default&f=tweets

Here are some more tweets from high profile tweeters:
https://twitter.com/pash22/status/621131960983908352
https://twitter.com/picardonhealth/status/621134395731255296

And here's a positive response from one of the tweeters re the potential to publish an article about Brian's letter:
https://twitter.com/deborahblum/status/621128312522412032


(Extra info: Note that #MECFS is a popular 'hashtag' that people use to indicate that their tweets are about ME/CFS, so you can use #MECFS as a search term to read tweets re the subject of ME/CFS. For convenience, I've set up the search page for you, here.)

 

[barbc56]

Not sure what you mean, @mfairma

As in magic spells.

to call upon or command (a devil or spirit) by invocation or spell.

http://dictionary.reference.com/browse/conjure+up

Barb

 

[Bob]

I've just been looking through the tweets (that I've listed) about Brian by the high profile journalists, and many of them have been retweeted by numerous other high profile journalists, so Brian's letter is going viral via high profile journalists. I've never seen anything like it before in relation to ME/CFS.

 

[Bob]

For Reference

Below, for convenience, I've collated all of the tweets that I've posted previously in this thread. So all the Tweets are now in this post.

If there are new Tweets, then I'll update this post instead of creating a new post each time. So keep an eye on this post for updates, if you find it a useful reference.

Here's Brian's original tweet, in case anyone wants to retweet it:
https://twitter.com/brianvastag/status/620993700424867840

This is the Washington Post Tweet:
https://twitter.com/PostHealthSci/status/623115202993614848

And these are Columbia University's Tweets:
https://twitter.com/ColumbiaMSPH/status/623545537778851840
https://twitter.com/CII_Columbia/status/623901487907905536

The following link will take you to a Twitter search page that shows you all new tweets mentioning 'brianvastag':
https://twitter.com/search?q=brianvastag&src=typd&vertical=default&f=tweets

_____________________________________________________________________

Edited to add:

I didn't know that this was possible until now. This makes things much easier.

I've created a Twitter list of the Tweets by the journalists. This makes it very easy to 'favorite' and to 'retweet', and it's easy to share the list so that other people can easily 'favorite' and 'retweet' each of the Tweets:
https://twitter.com/bobbobme/timelines/623945829573914625

You could simply retweet the following Tweet, if you'd like to bring the above list to people's attention:
https://twitter.com/bobbobme/status/623951718619979776
_____________________________________________________________________

These are the weblinks to each of the Tweets...

These are the Tweets that I've posted previously in this thread:
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

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

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

https://twitter.com/pash22/status/621131960983908352
https://twitter.com/picardonhealth/status/621134395731255296

https://twitter.com/deborahblum/status/621128312522412032

New Tweets, not previously posted:
https://twitter.com/Emma_Marris/status/621009212269682688
https://twitter.com/hcpearson/status/621255979284434944

New (second batch):
https://twitter.com/ElieDolgin/status/621342227944579072
https://twitter.com/susan_moran/status/621351783336558592
https://twitter.com/AutoRockDC/status/621358740961390592
https://twitter.com/lauranewmanny/status/620947368842776576

New (4th batch):
https://twitter.com/mattbai/status/623176900643528704
https://twitter.com/gardnerselby/status/623125461325877249
https://twitter.com/JasonTron/status/623173196762771457

These three tweets are from same journalist:
https://twitter.com/JenHoward/status/623171041641279488
https://twitter.com/JenHoward/status/623171376757796864
https://twitter.com/JenHoward/status/623171610774777857

Washington Post journalists - These have been Tweeted since the Washington Post article was published):
https://twitter.com/arianaeunjung/status/623103360732782592
https://twitter.com/JoelAchenbach/status/623104583938781184
https://twitter.com/aolivo/status/623470634245484544
https://twitter.com/lauriemcginley2/status/623114599030747136
https://twitter.com/MrDanZak/status/623109904014921729
https://twitter.com/bylenasun/status/623104105653927936

Washington Post Twitter account:
https://twitter.com/PostHealthSci/status/623115202993614848

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 other Tweet is in the list above):
https://twitter.com/juadams/status/621003179132645376

New:
https://twitter.com/vmjaggard99/status/623555890268999680

Columbia University:
https://twitter.com/ColumbiaMSPH/status/623545537778851840

Centre for Infection and Immunity (CII) at Columbia University (CII is Dr Lipkin's department):
https://twitter.com/CII_Columbia/status/623901487907905536

 

[Sasha]

I've just been looking through the tweets about Brian by the high profile journalists, and many of them have been retweeted by numerous other high profile journalists, so Brian's letter is going viral via high profile journalists. I've never seen anything like it before in relation to ME/CFS.

Me neither! This is very exciting!

 

[aimossy]

Talk about highlighting a problem! This had been the single most effective way in getting a major issue seen. Hopefully it will lead to some great articles in future and at least the journalists watching more closely.

 

[Sasha]

Even 'favouriting' the tweet (or I guess it's 'favoriting' if a US person) shows the person tweeting that there is interest in this subject. So if you have an account, it would be great if we can all favourite and/or retweet each of the tweets that I've linked to. It's easy to set up a Twitter account if you haven't got one. But a warning: Twitter can be quite a distraction once you get the hang of it! (But, obviously that's not a bad thing if one is stuck in bed or on the sofa all day!)

So this is what people should do to get this attention?

What about other social media? I don't understand social media...

 

[Bob]

So this is what people should do to get this attention?

What about other social media? I don't understand social media...

Yes, favouriting and retweeting is a good start. You could also reply to each of the tweets with a short thank-you message, thanking them for raising the profile of this neglected illness, or asking if they could include a feature about ME/CFS in their journal etc.

As for other social media, I don't do Facebook, so best for others to answer. I don't know if Brian has a Facebook account? If he does then it's possible to share his Facebook posts.

 

[Roy S]

This feels like the time when NIH may just move its concrete feet. Here's hoping....

Thanks for the efforts, Brian. I think some progress may be possible.

 

[Sasha]

I see Jennie Spotila has blogged about Brian's article:

http://www.occupycfs.com/

 

[K22]

Well done for the positive response. I still think The least we should be aiming for -

"MEANINGFUL Treatment Options
Montoya then asked “the question” – what will it take to find meaningful treatment options? Options that consistently move the bar for patients? Given a hundred million dollars a year in funding, he believed consistently effective treatment options could be developed in a few years."

 

[Sasha]

@Bob, what are these people doing?

https://twitter.com/brianvastag/status/620993700424867840

Is that retweeting, or are they sending a message to Brian and Director Collins? Or both?

I don't understand Twitter!

 

[waiting]

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....

@viggster, thank you! Yours is a phenomenally effective letter at getting the point across.

I particularly like the following 2 highly memorable quotes from your letter (for other PR members' benefit):

On orphan illnesses:
"... the history of ME is akin to locking an entire orphanage in a cellar and bulldozing the house."

On exercise:
"Exercise for ME patients is more damaging than sugar is to a person with diabetes."

Didn't Dr Lipkin say that the *reason* his ME NIH application was turned down (after he specifically went and asked the application panel members) was because they thought ME was psychosomatic?

 

[SOC]

I've just been looking through the tweets (that I've listed) about Brian by the high profile journalists, and many of them have been retweeted by numerous other high profile journalists, so Brian's letter is going viral via high profile journalists. I've never seen anything like it before in relation to ME/CFS.

This is something we've been needing for decades -- someone with real media influence taking a strong media stand for PWME. It could have been a politician or a celebrity, but in this case it was a well-known journalist. The rest of us can yell all we want, until the media hears from someone it/they care about, they don't really take us seriously. Hurrah to Brian (@viggster) for being that wedge in the crack that might just drive an opening into media awareness of real ME/CFS. Sometimes all it takes is that first push to get real momentum going. Let's hope this is that push.

 

[Sasha]

Easy for me to say but do we know the total reach of these people:

http://forums.phoenixrising.me/inde...t-journo-with-me-cfs.38703/page-3#post-618823

Total number of followers, or something?

 

[Kati]

As in magic spells.



http://dictionary.reference.com/browse/conjure up

Barb

Ahhh... English is my second language...

 

[lycaena]

So this is what people should do to get this attention?

What about other social media? I don't understand social media...

on Facebook it was posted by the blog's fb-page for example https://www.facebook.com/permalink.php?story_fbid=927596837278717&id=135707836467625 (you can like and share)

 

[Bob]

@Bob, what are these people doing?

https://twitter.com/brianvastag/status/620993700424867840

Is that retweeting, or are they sending a message to Brian and Director Collins? Or both?

I don't understand Twitter!

lol, you're on a steep learning curve here.

OK, so, underneath Brian's tweet are a list of responses from other people, where they've written their own messages. Those are individual tweets. If you reply to a tweet, then it gets sent out as an individual tweet but it also gets listed underneath the tweet that you are responding to. To reply to a tweet, there's a little text box just underneath the tweet, or you can click on the little curvy arrow icon at the bottom of the tweet (the first icon from the left) and a text box will appear.

If you look at all of the tweets listed underneath Brian's original tweet, they all start with Brian's Twitter tag... This is written into the tweet automatically when responding to a tweet. If someone's tag is included in your tweet it means that it will get sent to their alerts for their attention. Busy celebrities don't read most tweets directed to them because they are overwhelmed, but lesser mortals tend to read everything directed to them. (If you want your tweet to be seen by all your followers, then don't start it with a tag. If u start a tweet with a tag it will be mainly for the attention of the person tagged. It will still be public but not widely distributed.)

Where the nih director has been tagged, that means that the tweet will also be sent to his alerts. (But it doesn't mean he will necessarily read them.)

Now... It starts to get interesting... If you look just underneath Brian's tweet, on the left hand side, it says 'retweets' and 'favorites' and gives a number for each. That indicates how many times the tweet had been... Yes, you've guessed it... how many times it's been 'favourited' and 'retweeted'. If you click on the numbers indicating the number of retweets or favourites (where it says 'retweets' and 'favourites'), it opens a pop up box that gives you a full list of the people who have retweeted or favourited, except for any private accounts.

If you look at the avatars listed horizontally, just below the tweet, they give an indication of a small portion of the people who have retweeted. That's not very helpful really, but it looks pretty.

To favourite or retweet, click on the second and third icons, from the left, underneath the tweet. So, these are just to right of the 'reply/respond' icon that I mentioned above. The circular arrow symbol is to 'retweet', and the star symbol is to 'favourite'.

Hope that helps? Probably as clear as mud? You'll have a head ache by now.