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

[searcher]

@leokitten - I was pretty confident that you didn't want your letter public-- I knew you definitely didn't want your name public-- but just wanted to confirm so that no one inadvertently posted it elsewhere. It is not disappointing to me at all- I have only been semi-public about my illness in the last year after five years of secrecy for basically the same reasons as you. Writing your letter to Dr Collins was incredibly courageous and I am sorry he has not yet responded. I am also hoping that Dr Collins will respond now that there has been so much publicity.

 

[Snow Leopard]

I'm currently not convinced Dr. Collins has any genuine concern and will not believe that much if anything has changed unless I see direct action being taken within the NIH towards building research capacity, and perhaps moving the group to a better funded department, or giving it its own funding allocation.

If this is underway then I can understand the secrecy (until the changes are ready to be announced) but if no such changes happen, then I will not take his claim to be concerned seriously.

We had the same thing with Obama saying he was going to look into things - nothing changed. We need action, not words within the NIH.

 

[Sasha]

Anybody know Dr Collins's email address?

 

[leokitten]

Anybody know Dr Collins's email address?

francis.collins@nih.gov

 

[Sasha]

Please note this thread on taking advantage of Brian's terrific letter appearing this morning in the Washington Post:

http://forums.phoenixrising.me/inde...s-in-the-washington-post-help-boost-it.38833/

Come and join us on that thread and take some action!

 

[Sasha]

And don't forget to go to the page on the Washington Post - reward them with web traffic! Make them see they did the right thing by publishing Brian's letter.

 

[Bob]

I didn't know that this was possible until now. 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

 

[Izola]

I meant dollars not dolls!

My addled brain accepted it as an acceptable term for currency. iz

 

[Izola]

Ah, but today I am so off task!!! Wrote a novella on here, somewhere, never mentioned ME or anything related to it.

If anything will light a match under a politico, it's a sick top reporter with a grievance and lots of top journalist friends.

 

[Denise]

When do we find out what Dr. Collins' response to Brian Vestag entails?

 

[viggster]

There's "something happening" at NIH in regards to this but I don't have any details. Giant bureaucracies move slowly.

 

[Kati]

There's "something happening" at NIH in regards to this but I don't have any details. Giant bureaucracies move slowly.

Great to hear, @viggster. Perhaps we will find out more about that at CFSAC in 2 weeks.

 

[alex3619]

I have seen it reported from Co-cure that the CDC ME/CFS budget might have been reduced to ZERO by changes in the US Senate.

Here is a letter proposed for patients to send:
http://solvecfs.org/cdc-letter

I have not confirmed the claims.

While I do not trust the CDC, nor do I think they do much good, there is the multisite study and I do not know if it would be in jeopardy.

Further, taken in conjunction from (admittedly limited) recommendations from the IOM and P2P reports, this has disturbing implications if these claims are founded.

However the document imaged does not look quite right. It needs more investigating.

 

[Bob]

I have seen it reported from Co-cure that the CDC ME/CFS budget might have been reduced to ZERO by changes in the US Senate.

FYI, Jennie Spotila had written about this in her latest blog (note the dynamic discussion in the comments section after the blog):
http://forums.phoenixrising.me/inde...ing-promotion-of-cfs.38999/page-2#post-625949
http://www.occupycfs.com/2015/08/04/no-cdc-funding-for-cfs/

Edit: I've started a new thread about it:
http://forums.phoenixrising.me/inde...es-to-slash-cdcs-me-cfs-budget-to-zero.39150/

 

[jimells]

There's "something happening" at NIH in regards to this but I don't have any details. Giant bureaucracies move slowly.

There's something happening here
But you don't know what it is...
Do you, Mr Jones?

Bob Dylan

 

[Scarecrow]

There's something happening here
But you don't know what it is...
Do you, Mr Jones?

Bob Dylan

Alternatively,

There's something happening here
What it is ain't exactly clear

Buffalo Springfield

 

[worldbackwards]

I wish they all could be California,
I wish they all could be California...

I'm doing this wrong, aren't I.

 

[waiting]

@leokitten, @viggster,

FYI, did you see @jspotila CFSAC testimony re: Dr. Collins' response last year to CFSAC request for NIH RFA? (Thanks to @Sasha for posting it on the current CFSAC meeting thread.)


http://www.occupycfs.com/2015/08/17/cfsac-testimony-jennie-spotila-august-18-2015/#comment-131136

 

[Izola]

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/i/web/status/620993700424867840

This is the Washington Post Tweet:

https://twitter.com/i/web/status/623115202993614848

And these are Columbia University's Tweets:

https://twitter.com/i/web/status/623545537778851840

https://twitter.com/i/web/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/i/web/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

I feel like I am in Hitchcock's "The Birds" with all this tweeting going on. Eek! Lots of #'s make me crazy. But they are blue so I can send them on their way. Over and over.

Sorry, feeling a little ME crazy lately. I was being set up by social workers with a new home (mine got destroyed a while back) and a care-giver when early one morning there came a pounding at my door. I'm pretty much bedridden but I shuffled to open the door. It was one of the social workers and she was screaming at me to get up and do my own chores, shopping, cooking, laundry, etc. She said I didn't qualify even for services with no qualifications except age. The screaming and berating was awful. I relapsed. I know I read some of this but only have scattered memories of the last 4 months.

I am sure what happened was due to my having ME owksta cfs and she believed it was the Rat-B------ shrinks disease definition. I have a working vocabulary of 75 and I can't get the 75 right, either.

Thank you, Bob, for setting this all up so that when I wake up again in the next few weeks I can tweet and re-tweet. iz

 

[Izola]

I wish they all could be California,
I wish they all could be California...

I'm doing this wrong, aren't I.

Hi: Its only when you start doing things upside down, inside out and backwards that things really start getting tricky.

I love your trees. Iz