Congress proposes to slash CDC's ME/CFS budget to zero

[SB_1108]

I have submitted request to Last Week Tonight with John Oliver to make a report on ME/CFS
http://talk.hbo.com/t5/Last-Week-To...nding-for-CFS-down-to-zero/m-p/496181#U496181

Last Week Tonight is a weekly news comedy show but it is very respected and influential. I think it would immensely help us if they reported that the Senate has cut the funding for such a disabling illness down to zero.

I left the link above. Please comment to show many people are interested in this topic. Add relevant information that I have forgotten. Feel free to correct me there in the comments if I wrote something you disagree with. Like posts.

It's HBO's site and it's really easy to sign up, you just need an e-mail address.

Let's try and get our voices heard.

OMG Thank you so much for posting this! I watch that show all the time and I always think he should do a piece on ME/CFS! But every time I go to submit it as a topic, I google search until I'm crazy and then I give up!

For those of you not familiar with "Last Week Tonight with John Oliver" - it has become a huge hit! It is seen as the replacement for "The Daily Show with Jon Stewart".

Even if he didn't discuss recent proposed funding cuts specifically... Just to have him do a piece on the lack of ME/CFS funding in general would be huge in terms of raising awareness for our disease!

 

[SB_1108]

Update: We have created an "Action Alert" for the HBO - Last Week Tonight with John Oliver thing!

http://forums.phoenixrising.me/inde...k-tonight-with-john-oliver.39168/#post-627496

 

[Kati]

OMG Thank you so much for posting this! I watch that show all the time and I always think he should do a piece on ME/CFS! But every time I go to submit it as a topic, I google search until I'm crazy and then I give up!

For those of you not familiar with "Last Week Tonight with John Oliver" - it has become a huge hit! It is seen as the replacement for "The Daily Show with Jon Stewart".

Even if he didn't discuss recent proposed funding cuts specifically... Just to have him do a piece on the lack of ME/CFS funding in general would be huge in terms of raising awareness for our disease!

I am so worried they will make fun of the disease itself. This would be a big risk.

 

[SB_1108]

I am so worried they will make fun of the disease itself. This would be a big risk.

Thats not really the format of the show... he discusses political issues. He might make a few jokes about the name of the disease but generally the episode's main segment covers a major social injustice in length and detail.

 

[Bob]

ME Action have provided a simple one-click advocacy tool to send a letter to the appropriate congressional committee members to demand that they restore funding to the CDC's ME/CFS program. It couldn't be more simple to use:
http://www.meaction.net/2015/08/08/reinstate-cdc-funding-for-mecfs/

And here's some Tweets, if you'd like to retweet:
https://twitter.com/MEActNet/status/630102498188099584
https://twitter.com/bobbobme/status/630143688874807300

 

[Ecoclimber]

Just speculating here, but I am wondering if the health, medical, disability industry and the APA sent their lobbyists in the hundreds to Congress to argue for a funding cut for ME/CFS research as way to defeat the IOM recommendation for increase funding. Since the IOM moved the ME/CFS disease classification from psychosomatic to orgranic disease, was this a blindsided attack to defeat further research in establishing a biomarker for this illness? The reason for my speculation is the fact that this is just chump change on the national budget considering $163 billion cost overruns for the F-35 fighter jet, the increase in the NIH budget and the annual ME/CFS cost to GNP of $17-24 billion dollars!

I will work behind the scenes with Senator Patty Murray who sits on the United States Senate Committee on the Budget and also Senator Maria Cantwell as best I can.

 

[WillowJ]

My hunch is that they probably don't have any insight into the nature or severity of the illness, or the impact on lives, or the severe lack of research funding.

That's probably a good guess.

If the CDC stops all activities on "CFS", is that really a big loss to ME patients? It seems like the only reason we can come up with why this would be bad is the multisite study and the distant hope that their medical education efforts might some day pay off. Otherwise the CDC has stonewalled everything else that advocates have asked them for for years and years.

I'm having hard time disagreeing with this.

They continue to stonewall on items like graded exercise and a thorough revision of the CDC website. Even if they cannot say what it is, they could stop saying nonspecific things on a CFS treatment list as if they were specific to this disease (like nutrition, sleep hygiene, and counseling), which could lead a doctor (and researcher) to take the illness less seriously.

This is a good chance to lobby congress for a specific outcome that congress members can easily respond to and achieve on our behalf. (And congress-people like to have easy specific outcomes that they can easily achieve so they can demonstrate that they are doing something useful.)

Why can't we ask for funding at an NIH Institute instead? If they can't decide which organs-system-specfiic one to put us in, there is always the National Institute of General Medical Sciences (NIGMS).

 

[Neunistiva]

I am so worried they will make fun of the disease itself. This would be a big risk.

That would never happen, it's not that kind of show. He always tackles unfairness and social issues. He and his team mock people like Donald Trump, corrupted politicians, doctors who take bribes from pharmaceutical companies.... and are not afraid to take even on controversial issues. I have watched hundreds of his shows and I have never seen him poke fun at the little man, in any context or issue.

Also, he and his team are known for carefully and extensively researching every topic they take on, that's why I liked them in the first place. And you can't extensively research ME/CFS and come up with anything but scientific evidence that it is a real and devastating illness which is not funded properly.

Actually, I wholeheartedly suggest you watch a few youtube episodes, he is very funny and incredibly informative.

Please don't let the worry that something might go wrong stop you from trying to make a difference.

 

[Ecoclimber]

That would never happen, it's not that kind of show. He always tackles unfairness and social issues. He and his team mock people like Donald Trump, corrupted politicians, doctors who take bribes from pharmaceutical companies.... and are not afraid to take even on controversial issues. I have watched hundreds of his shows and I have never seen him poke fun at the little man, in any context or issue.

Also, he and his team are known for carefully and extensively researching every topic they take on, that's why I liked them in the first place. And you can't extensively research ME/CFS and come up with anything but scientific evidence that it is a real and devastating illness which is not funded properly.

Actually, I wholeheartedly suggest you watch a few youtube episodes, he is very funny and incredibly informative.

Please don't let the worry that something might go wrong stop you from trying to make a difference.

The problem is people having the intiative to sign up for one more site and one more password just to make a like. Is this the normal procedure by the producers of the show for creating a show topic? It's to bad that the site doesn't have a way to use your facebook, twitter or other accounts to log into the site which other sites have.

Does the show have a facebook or twitter page by which you can make a recommended topic? With the mass majority having an account on those sites, you will get more patients liking such a comment. Even Buzzfeed, you may get people linking into the site to make a like...just some suggestions.

 

[WillowJ]

Why can't we ask for funding at an NIH Institute instead?

I see some of the letters are urging both/and. I will do the same.

 

[Neunistiva]

Does the show have a facebook or twitter page by which you can make a recommended topic? With the mass majority having an account on those sites, you will get more patients liking such a comment. Even Buzzfeed, you may get people linking into the site to make a like...just some suggestions.

Great idea, if anyone has twitter or facebook account please contact
Twitter: Last Week Tonight
Facebook: Last Week Tonight

If you make a tweet or a post please link back to this thread so others can like it and retweet it or whatever

I'm not sure what buzzfeed is

 

[SB_1108]

I just submitted it as a new action on MEACTION.NET - hopefully they will approve. Not sure how much that will help? You can't send them messages on Facebook but I agree about Twitter... Can someone check on that (I don't have a Twitter acct)?

 

[WillowJ]

Or is it just not specifically being funded by congress by name, but will still get funded by the NIH as an un-named piece of the NIH funding pie?

I wouldn't count on that.

 

[*GG*]

I will work behind the scenes with Senator Patty Murray who sits on the United States Senate Committee on the Budget and also Senator Maria Cantwell as best I can.

Yeah, tell Sen. Murray this is another war on women, seeing how women are the majority of patients!

GG

 

[WillowJ]

I will work behind the scenes with Senator Patty Murray who sits on the United States Senate Committee on the Budget and also Senator Maria Cantwell as best I can.

Good.

They also work closely with Jeff Merkley (OR), who, if I am looking at things correctly, is on the subcommittee in question. So they should be able to explain things to him. He might even be able to say if there is some other plan, or if they just didn't know what "CFS" was and didn't think it sounded important (which could be fixed to some appropriate plan with appropriate info).

 

[Bob]

Summary

In case it helps anyone, i've attempted to summarise all the essential info from this thread, explaining the events at congress and the actions that can be taken by us...

In the budget allocation discussions for the CDC, the Senate has provisionally proposed to cut the funding, that is specifically allocated to ME/CFS, from the overall CDC budget. If this proposal went ahead, it doesn't mean that the CDC would automatically be forced to stop its ME/CFS program, but it's a way that congress can justify giving the CDC a lower overall budget, and the CDC would have to find the funding from elsewhere in its budget or stop the ME/CFS program. This isn't a CDC-initiated action - The CDC requested full funding for their ME/CFS program - It seems to be a fairly random money-saving decision on the part of the Senate, except that we haven't been given the reasons for their decision, so we don't know. The equivalent report from the House of Representatives (there are two separate reports - one from each house) leaves the funding untouched, so there's no problem there. The next stage is the committee stage where the two reports are combined, via discussion and negotiations, into a single congressional budget decision. Obviously we can't predict the outcome of the committee process, but we may be able to influence it.

If you want to take action, it's very easy - you can choose to take just one of the quick and easy actions that I've set out below... There is a petition to congress, and there are two email templates available to choose from, one of which has been made available as a one-click advocacy tool via ME Action. These are all directed towards the appropriate budget committee members - all details you need are given at the links provided below.

Petition (There seem to be two versions of the exactly same petition - I'm not sure why):
http://my.meaction.net/petitions/reinstate-federal-research-funding-for-me-cfs
https://www.change.org/p/laura-frie...ium=email&utm_campaign=share_email_responsive

And there are two email templates that can be sent; one from the Solve ME/CFS Initiative (SMCI) and one from Bob & Courtney Miller. ME Action have also placed the SMCI template onto their one-click advocacy action website to make things ultra-easy. I think the template by Bob & Courtney Miller is slightly better but that's just a personal preference.

ME Action's one-click advocacy tool (it uses the Solve ME/CFS Initiative's template - but you can insert your own text including Bob & Courtney Millers's template if you prefer it):
http://www.meaction.net/2015/08/08/reinstate-cdc-funding-for-mecfs/

Bob & Courtney Miller's template:
http://www.cortjohnson.org/blog/2015/08/07/act-now-just-say-no-to-funding-cuts-for-mecfs-research/

Solve ME/CFS Initiative's template:
http://solvecfs.org/cdc-letter
http://forums.phoenixrising.me/inde...cdcs-me-cfs-budget-to-zero.39150/#post-627091

So, if you want the CDC's allocated funding for ME/CFS continued, get clicking! You don't need to do all the above - you can just choose one action to take. I've simply provided all the info so that you can make an informed choice. (If you don't want the budget restored, then please ignore.)

Twitter - If you'd like to do some Tweeting, then you can retweet these:
https://twitter.com/MEActNet/status/630102498188099584
https://twitter.com/bobbobme/status/630143688874807300

Facebook - And you can share this on Facebook:
https://www.facebook.com/CFIDSAssn/posts/10153083147192108

 

[Bob]

The Massachusetts CFIDS Association has now provided a template email as well:
http://forums.phoenixrising.me/index.php?threads/restore-cdc-funding-for-cfs.39184/

 

[Roy S]

A similar problem happened in 1991 when I was the (volunteer) CFS lobbyist living on Capitol Hill. It was relatively easy to fix at that time.

There was an increase in the CDC funding in the House Labor HHS Appropriations subcommittee report language, but nothing in the Senate Labor HHS Appropriations Subcommittee report language.

To oversimplify a bit, after many people wrote respectful letters in support of the increase, I arranged for a meeting with the 2 Legislative Aides (LA) of our senator, Harry Reid, and representative, John Porter, who were on those key committees and submitting the language.at the time. That was usually called "providing leadership". There was an agreement to add the increase in the conference report and that happened.

As other people have stated this is not a done deal and is just report language, not law. There could be unpredictable problems if the conference report does not reconcile the difference between the House and Senate report.

Sorry to enter the conversation late due to present brain stamina problems.
　
　
　
　
　
　

 

[Ecoclimber]

Yeah, tell Sen. Murray this is another war on women, seeing how women are the majority of patients!

GG

 

[gretac]

And here's the update from the Massachusetts CFIDS Association already:

"Actually, one of the appropriations committee staffers has reached out to us and I will be speaking with him by phone on Thursday, so we are getting action from this email campaign already. Also several of us from the Association will be speaking with Sen. Warren’s office soon – an appointment is being arranged. She is on the Committee for this portion of the budget, so she will be an important ally.
The support from all of you really makes a difference! Thank you"