U.S. Congressional Action: Ask your House Rep. to sign letter for ME (deadline April 4th)

[ahimsa]

URGENT Congressional Action! Ask your House representative to sign a letter that inserts favorable language for ME into the House Appropriations Committee report on the FY18 budget.

Deadline to sign: Tues., April 4th.

Contents of letter - https://drive.google.com/file/d/0B6UlcglLsyp7NkY2Ui1Pc3dRMGM/view

Contact your House rep. today!

More details available on ME Action web site:

http://www.meaction.net/2017/03/29/...-to-sign-letter-that-supports-funding-for-me/

My tweet from yesterday (which turned into a short thread):

https://twitter.com/i/web/status/847956227539689472

 

[RogerBlack]

The letter above fails to mention the 5.4 million cut eliminating CFS work in the CDC 2017 budget (Which was first proposed in 2015, but delayed by advocacy in that year. In Mar 2016 the 2017 budget had this cut and no advocacy happened(?) )

'Pak' mentioned below was a senator involved in the budget process in 2015.

https://www.masscfids.org/advocacy/633-update-on-cdc-funding-for-me-cfs

Pak said that back in February (of 2015)when the budget process began, he knew nothing about ME/CFS. The Senate was looking to cut a big chunk from the CDC budget, and they began hunting for places to trim. Pak hears from many patient advocacy groups during the annual budget process, but no one had contacted him about ME/CFS. A small program with no representation on Capitol Hill was a prime candidate for slashing, so Pak and his colleagues zeroed out the proposed $5.4 million ME/CFS fund in the Senate’s proposed CDC budget.

Which indicates that the thing started in Febuary 2015, and was caught and changed by advocacy.
Apparently, 'we' missed the reintroduction of the cut in 2016 for the forthcoming 2017 budget.

More than 'more positive language' - arguments should be to restore this funding.

 

[ahimsa]

Hi @RogerBlack

I have no idea about the background behind this. It sounds like you know a lot more about these budget issues than I do!

Have you talked with your own representative and/or your senators about this? You would probably be very persuasive in helping them to understand how important it is to keep funding ME/CFS research in all the different government agencies.

I try to do what little I can to fight for more ME/CFS funding. I tend to follow the actions that ME Action proposes (too much brain fog to start from scratch on my own) but folks can do other actions, too!

To anyone else reading this: Please do what you can (no pressure, make sure self-care & rest is a priority!) to support ME/CFS research funding.

We don't all have to take the same approach. Write letters, make phone calls, send email, meet in person, attend town halls, post on social media, make personal donations for private research - do whatever works best for you!

 

[RogerBlack]

UK here.
All our politicians are busy at the moment vacillating between panic over brexit, and 'work will set you free' ideas of health.
(they recently cut the allowance to disabled people found to be not in the sickest group, on the grounds that it was a 'perverse incentive' not to work. Never mind that these people may have been assessed as having livelong conditions and significant disabilities. The claim is made it's going into employment support instead. Which is a lie.)

I've been advocating in a limited way against the worst trials proposed in the UK, and trying to counter some of the worst psychobabble spouted about CFS.

The above was a few minutes googling.

 

[ahimsa]

UK here.

Okay, I didn't know that, thanks!

I've been advocating in a limited way against the worst trials proposed in the UK, and trying to counter some of the worst psychobabble spouted about CFS.

Thank you for the work you're doing! I appreciate all the ME/CFS advocacy being done all over the world.

The above was a few minutes googling.

Well, I think you're being too modest. You're not taking into account brain fog.

Even after you've posted this extra info I'm not not sure I fully understand the whole issue and will have to try to re-read the proposed letter and figure it out.

Anyway, thanks.

 

[RogerBlack]

Even after you've posted this extra info I'm not not sure I fully understand the whole issue and will have to try to re-read the proposed letter and figure it out.

Anyway, thanks.

I'd not fully read the letter.
One major issue that leaps out 'Encourage CDC to complete the work ...' - the funding for this work for CFS has been entirely cut in the 2017 budget.
There is no funding at all this year for this work, so adding language to 'encourage' work that has no funding seems of extremely questionable point.

 

[ahimsa]

Bumping up this thread for those who missed it.

Deadline is tomorrow! (Tuesday, April 4)

 

[ahimsa]

Here's a follow-up post on that letter for ME research funding.

The letter got 30 signatures. Not bad for such short notice but not as many as we got the last time Reps Eshoo & Lofgren sponsored a letter about NIH funding for ME/CFS.

Here's the report from ME Action which includes a link to the letter to see which representatives signed (mine did!)

http://www.meaction.net/2017/04/10/thirty-u-s-house-reps-show-support-for-appropriation-language/