Resource ME/CFS Organizations Demand Congress Restore CDC Funding Program [Deleted]

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Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort submitted a new resource:

ME/CFS Organizations Demand Congress Restore CDC Funding Program - Orgs respond to Congress's zeroing out of CDC's CFS programs funds

Dear Senate Appropriations Committee:

RE: Please restore funding for the CDC/Chronic Fatigue Syndrome Program in the Conference Committee


We note that in the S.REPORT 114-74-114th Congress (2015-2016), to accompany S. 1695, submitted June 25, 2015, re: DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATION BILL, 2016, that funding for the CDC/Chronic Fatigue Syndrome program area has been reduced to ZERO (FY 2015 $5.4 million; ask 2016...
Read more about this resource...
 

Who Me?

Well-Known Member
I think that's posted on PR. there are a few threads and i posted it on an ME Facebook page

Your blog is great so I put the link on FB. the template is great

I also sent a nasty email to the four idiots on the committee who are on vacation and copied my 2 state senators.

Someone suggested to resend at the end of August so will do with your blog letter.
 
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Neunistiva

Member
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-Tonight-with-John/Topic-idea-Senate-cuts-funding-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. Feel free to correct me there in the comments if I wrote something you disagree with.

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

Who Me?

Well-Known Member
I love John Oliver but don't have HBO

Why just limit yourself to him? Larry Wilmore, why not Trevor Noah?
 

Neunistiva

Member
I love John Oliver but don't have HBO

Why just limit yourself to him? Larry Wilmore, why not Trevor Noah?
Because I have no idea who those people are? :) I'm European, I don't get HBO either, I watch John Oliver's show on his official Youtube channel and he mentioned once that they get suggestions for topics from their audience.

You don't need to have HBO, just sign up with email eddress on that site to comment and like. Despite posting this on various ME/CFS forums my suggestion on Last Week Tonight's message board so far has gotten only one like and no replies.

But please, if you do know other shows do submit! Chances if we send a request to one show are small, but if we send to hundreds we might hit a jackpot.
 

Who Me?

Well-Known Member
I would have no way of knowing you aren't in the US.

I'm using my energy to contact government officials. I don't think enough people here know about John Oliver, unlike Jon Stewart who just retired (look for The Daily Show) for it to make much of an impact. That's just my opinion.
 

Neunistiva

Member
I'm using my energy to contact government officials. I don't think enough people here know about John Oliver, unlike Jon Stewart who just retired (look for The Daily Show) for it to make much of an impact. That's just my opinion.
Yes, that's the main problem, so much we could do so little energy.

I chose John Oliver's Last Week Tonight because they spend 20 minutes going in-depth into the subject and have already reportedly caused a difference for many issues.
 

Who Me?

Well-Known Member
I agree that they can help with some stuff, but IMO this is not important to people, which is why they cut funding in the first place.

Contacting a cable TV show or someone with a YouTube is not going to have enough clout for something like this unless they were already well known outside those to places. John Oliver is not. He got his start on The Daily Show which got him his show on HBO. Unless people followed the Daily Show, they aren't going to know who he is. Anyone else? I don't think so.

I sent letters to the 4 people named in Cort's Blog along with my 2 state senators. I'm looking for more people to send it to.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I think that's posted on PR. there are a few threads and i posted it on an ME Facebook page

Your blog is great so I put the link on FB. the template is great

I also sent a nasty email to the four idiots on the committee who are on vacation and copied my 2 state senators.

Someone suggested to resend at the end of August so will do with your blog letter.
Minx - you're deadpan humor - I think of it as humor - it just makes me laugh. Thanks again...:D
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I agree that they can help with some stuff, but IMO this is not important to people, which is why they cut funding in the first place.

Contacting a cable TV show or someone with a YouTube is not going to have enough clout for something like this unless they were already well known outside those to places. John Oliver is not. He got his start on The Daily Show which got him his show on HBO. Unless people followed the Daily Show, they aren't going to know who he is. Anyone else? I don't think so.

I sent letters to the 4 people named in Cort's Blog along with my 2 state senators. I'm looking for more people to send it to.
I do want to say that I have theory or a hypothesis or whatever the heck it is - that this could be a good thing -- that it's part of a massive reorganization of the CFS research growth program. It's kind of a zany idea but who knows? Zeroing out the entire budget is just weird ! :grumpy:
 

Neunistiva

Member
So far people are really responding well to the thread at Last Week Tonight. CFS/ME is the most commented and liked thread of ALL TIME on Last Week Tonight's message board. And not only that but comments are spot-on, moving, and contain correct information.

I'm kind of proud of ME/CFS patients.

I've been told that 60 minutes is actually a possibility...
Oh, wow, that would be great. Unfortunately I'm not in the US and I don't know any of those shows that don't have a web version too. Which is unfortunately most of them :(
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
That's great to hear! That's kind of amazing.

The thread on Phoenix Rising is very positive as well - which surprised me. After there were so many comments attacking the CDC from Jenny Spotila and others on her thread, the PR thread is almost entirely focused on doing what we can to retain the program. That's good - the ME/CFS community is rallying together to keep our research funds intact. I love it!

So far people are really responding well to the thread at Last Week Tonight. CFS/ME is the most commented and liked thread of ALL TIME on Last Week Tonight's message board. And not only that but comments are spot-on, moving, and contain correct information.

I'm kind of proud of ME/CFS patients.


Oh, wow, that would be great. Unfortunately I'm not in the US and I don't know any of those shows that don't have a web version too. Which is unfortunately most of them :(
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I snagged some more places to post from PR
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
 

Merry

Well-Known Member
So far people are really responding well to the thread at Last Week Tonight. CFS/ME is the most commented and liked thread of ALL TIME on Last Week Tonight's message board. And not only that but comments are spot-on, moving, and contain correct information.

I'm kind of proud of ME/CFS patients.


Oh, wow, that would be great. Unfortunately I'm not in the US and I don't know any of those shows that don't have a web version too. Which is unfortunately most of them :(
In your thread, @Neunistiva, at Last Week tonight, KarenDenmark stated that John Oliver ridiculed ME Awareness Day last year. I've been googling to try find a clip. It may have been in Season 1, Episode 4 that he listed "Bullshit Days," including ME Awareness (or possibly he said CFS Awareness Day). I need to take a break from the search. Can anyone out there produce the video? Thanks.
 

Neunistiva

Member
In your thread, @Neunistiva, at Last Week tonight, KarenDenmark stated that John Oliver ridiculed ME Awareness Day last year. I've been googling to try find a clip. It may have been in Season 1, Episode 4 that he listed "Bullshit Days," including ME Awareness (or possibly he said CFS Awareness Day). I need to take a break from the search. Can anyone out there produce the video? Thanks.
Here you go
 
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