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

[Bob]

Please note that this deals with suggested funding (and therefore is not legally binding),

My understanding is that congress sets the CDC's overall budget via this process. So the overall budget will be legally binding, once finalised. Yes the CDC would be able to continue funding the ME/CFS program if it chooses to, but it could equally choose not to. If congress is striking a line through ME/CFS funding and using ME/CFS as an excuse to reduce the CDC's overall budget (which appears to be the case for the Senate) then that's not good news for the future of ME/CFS at the CDC.

 

[Bob]

I've not found any new information, but it seems to be a simple case of the Senate striking a line through 'chronic fatigue syndrome' simply as a way to reduce the overall budget for the CDC. 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.

 

[Gingergrrl]

I saw that graph last night on a mast cell forum that I read (someone had posted it there and was horrified) and I tried to copy it over here but couldn't get it to work so am very thankful to @Bob for copying it so we can discuss.

I don't understand how a severe disease can just be allocated zero funding after they spent all that time and effort on the IOM report and this makes no sense to me. I guess this seals the deal that OMF and the End ME/CFS Project and Dr. Lipkin etc will get no funding from the US Govt? It makes me feel so ashamed of them right now.

 

[halcyon]

Have we been so abused for decades that we just look at this and sigh while turning the page?

I'm having trouble getting riled up about this myself. It's a mixture of shock, confusion, and indifference.

I'm shocked because it's so blatant. Two government reports come out outlining the lack of funding for this disease, and the government responds by pulling even more funding? Is this real life or some kind of Kafkaesque joke?

I'm confused because nobody in an official capacity has explained what this means in real terms. Will they shut down all of their CFS operations? Will they continue on as is and just pull the funding from a different budget line item? Something in between? I think we need official clarification about what exactly this means before we spend precious effort on fighting it.

I'm indifferent for obvious reasons. 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.

 

[Bob]

I'm confused because nobody in an official capacity has explained what this means in real terms. Will they shut down all of their CFS operations? Will they continue on as is and just pull the funding from a different budget line item? Something in between? I think we need official clarification about what exactly this means before we spend precious effort on fighting it.

There is no official line because these are simply initial congressional budget proposals. This is not the CDC's business, but it will impact on the CDC if implemented. This is the perfect time to take advocacy action to congress. I urge everyone to send the letter (posted above) to congress. All details for the letter are here: http://solvecfs.org/cdc-letter

 

[Bob]

Here's a Facebook post that can be shared on Facebook:
https://www.facebook.com/CFIDSAssn/posts/10153083147192108

 

[Scarecrow]

Is this a decision based on the assumption that CFS is not an infectious disease after all and therefore should not come under this budget?

I was hoping that might be the answer but it doesn't explain why a once postulated infectious disease was dumped at Women's Health in the first place.

 

[Liz Willow]

My understanding is that congress sets the CDC's overall budget via this process. So the overall budget will be legally binding, once finalised.

No. You are wrong.

It is only Congressional legislation, which, if passed, that is legally binding.

The zero budget recommendation is in the Senate's report which accompanies the actual appropriations legislation. The legislation (or "bill") does not make any references to CFS. This is quite usual. The accompanying reports, such as this one, can (and have) been ignored by the CDC.

The devil is in the details. I hope all advocates take the time to make well-informed decisions. http://www.occupycfs.com/2015/08/04/no-cdc-funding-for-cfs/

 

[Bob]

My understanding is that congress sets the CDC's overall budget via this process. So the overall budget will be legally binding, once finalised.

No. You are wrong.

It is only Congressional legislation, which, if passed, that is legally binding.

The zero budget recommendation is in the Senate's report which accompanies the actual appropriations legislation. The legislation (or "bill") does not make any references to CFS. This is quite usual. The accompanying reports, such as this one, can (and have) been ignored by the CDC.

I'm not sure how that differs to what I said. I said that congress sets the overall CDC budget, which will be legally binding once finalised, and you seem to have confirmed that.

 

[Liz Willow]

There is no official line because these are simply initial congressional budget proposals. This is not the CDC's business, but it will impact on the CDC if implemented.

My point is that this Senate report has no impact on what CDC is required to do (or restricted from doing) for "CFS". Only specific language in legislation, if passed (and thus turns into law) can do that.

 

[Liz Willow]

I'm indifferent for obvious reasons. 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.

Exactly.

 

[Sasha]

Action stations!

http://forums.phoenixrising.me/inde...c-research-funding-for-me-cfs-meaction.39159/

 

[Sasha]

Bob Miller has provided a template email:

http://www.cortjohnson.org/blog/2015/08/07/act-now-just-say-no-to-funding-cuts-for-mecfs-research/

The advocacy actions are coming thick and fast now!

 

[Bob]

Bob Miller has provided a template email:

http://www.cortjohnson.org/blog/2015/08/07/act-now-just-say-no-to-funding-cuts-for-mecfs-research/

Great template. I think that's slightly better than the Solve ME/CFS Initiative's template that I posted earlier.

 

[minkeygirl]

I got auto responses from 3 of the 4 people i sent my rather abrupt email to.

I got this message:

I am out of the office until Monday, August 31, with limited access to email until August 16. If you need assistance, please call the subcommittee's main line at 202-224-9145.

Here is the template. @ sushi, not sure if it's ok to post it here.

Dear Senator:

I am writing to urge you to reinstate the $5.4 million for Chronic Fatigue Syndrome funding. This is included in the CDC budget under Emerging and Zoonotic Infectious Diseases, on Page 59 of the Senate Budget.
I understand that the $5.4 million in funding submitted by the Centers for Disease Control for Chronic Fatigue Syndrome has been stricken from the 2016 appropriations bill by the Senate Appropriations Committee. This is an appalling act of inhumanity, and I urge you to reinstate the $5.4 million amount into the 2016 budget without delay.

As you may be aware, the prestigious Institute of Medicine of the National Academies published a landmark report on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on Feb. 10 of this year. The IOM committee unequivocally and scientifically established that Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome is a physiological, not psychological, illness. The IOM stated firmly that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is “a serious, chronic, complex, multisystem disease... In its most severe form, this disease can consume the lives of those whom it afflicts.”

The IOM committee further established that between 836,000 and 2.5 million Americans suffer from this devastating disease, which carries with it an economic burden of $17 to $24 billion to our country annually.

I am one of those Americans who has had their life and livelihood stolen by this illness, which renders 25 percent of us house- or bed-bound at some point. While the vast majority of us are not well enough to march on Capitol Hill to demand equitable funding from our government, rest assured we are still able to vote.

As a member of the Senate Subcommittee, I urge you to reinstate this $5.4 million CDC funding immediately. You have an opportunity to be on the right side of history.

Sincerely,

 

[Sean]

What Bob and Cort are saying. Don't throw the baby out with the bath water.

As Nielk suggests, whatever our opinion about the CDC, I'm not sure if it's wise for us to allow this to go unchallenged.
I'm feeling more annoyed about this as the info sinks in.

From a personal point of view, I tend to agree with most of Cort Johnson's comments on Jennie's blog.
I know that my opinions re the CDC aren't shared universally, but I feel very strongly about CDC's multi-site program.

Anyway, this is the comment that i've posted on Jennie's blog...

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I think this is a healthy discussion to be having within our community. I'm sympathetic to all the points of views expressed, but I absolutely agree with Cort Johnson that we need to look forwards and not backwards, and to assess the research program that the CDC is currently undertaking. And I believe that our community cannot afford to lose the multi-site program.

 

[Neunistiva]

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.

 

[Forbin]

Well, this is good news for the economy. By saving $5.4 million a year and applying it to the annual economic cost of the disease, M.E. is now only setting the US back $23,966,900,000 a year instead of $23,972,300,000.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078/

 

[duncan]

Recommended budget activity for Core Infectious Diseases, from 2015 to 2016, rose by just under $30 mill.

It looks like there are two new items at the top of the list that account for the proposed increase: Antibiotic Resistance Initiative and Laboratory Safety & Quality.

I suppose I can appreciate a need to research the former, but shouldn't Laboratory Safety & Quality already be part of any good Science protocol? I know I was taught about it each year in Bio 1 and Bio 2 and Chem 1 and...

How much did they suggest for reminding researchers to wear their Lab goggles? $5 mill.

 

[jimells]

I was hoping that might be the answer but it doesn't explain why a once postulated infectious disease was dumped at Women's Health in the first place.

Congress had nothing to do with moving the program from an NIH institute to ORWH. That was an internal NIH decision, just the like decision to close the three Centers of Excellence in 2003. I find it very interesting that 2003 is also the year the Canadian Consensus Criteria and Peckerman's research on impedance cardiography were both published.

The Centers of Excellence were closed (according to official explanations) in order to shift money into other research - but not research for our illness.

The impedance cardiography work clearly puts the boot to the psychobabble theory, so I expect some folks probably didn't like it very much.