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

[Seven7]

Make sure to give them a copy of the IOM report.

 

[out2lunch]

Being the fairly reasonable conspiracy theorist that I am (no tin fold fedoras for me, thank you), I do believe this action on the part of the Senate is 100% deliberate. They know full well which demographic will be harmed by this decision. But they simply don't care. Not one bit. And it has everything to do with the Billionaire Class that helped put them in Congress in the first place.

Yeah, the billionaires. They're the ones who've pretty much bought and paid for our Congress critters over the past several decades. They're the ones calling the shots to their GOP puppets currently running the Senate. And where did their money come from? Glad you asked!

Oil. Petroleum. Chemicals from petroleum. Pharmaceuticals from chemicals. Agricultural products like pesticides and fertilizers from chemicals. GMO seeds for agriculture that rely on pesticides and fertilizers to even grow. And on and on and on…

There's the link. That's your connection.

We're the canaries in the coal mine. Most of us not only suffer from ME/CFS but also from autoimmune diseases as well. Which, IMHO, are most likely the trigger for our ME/CFS, as it is most likely for other similar diseases for which there are still no cures, such as MS, Parkinson's, Alzheimer's, ALS, MD, et al.

Autoimmune disease around the globe is on the rise. More and more individuals in all corners of the planet are succumbing to autoimmune disease. Now tie this to the rising tide of chemicals in our environment, chemicals made from petroleum products drilled or dug out of the earth, and the rising tide of pollution these chemicals create.

The billionaires spend hundreds of millions every year trying to turn the public stupid, buying off scientists who believe global warming doesn't exist, attempting to alter the public discourse. Now think about how much they would be willing to spend to trash scientific research that proved autoimmune disease was linked to chemical pollutants in our water, air, food, and home environments. The very same substances that have made them billionaires.

Why would they want their puppets in government spending tax dollars proving that their toxic chemicals, the very essence of their wealth, is responsible for disabling tens of millions of individuals around the globe, with more individuals falling ill every year? They're going to do everything they can to protect those profits they've made from chemicals at all cost.

Not to mention, our disease hasn't been very profitable for Big Pharma. In fact, most of us do better by improving our metabolism through supplements and dietary changes and avoiding toxins in the environment than taking very expensive prescription drugs. Unlike Hep C, HIV, or cancer patients, ME/CFS patients so far have been financially disappointing for these pharmaceutical companies and the billionaire investors who manage them.

Of course it's easy for the Republican Senators to line out our funding from the CDC budget. We don't matter to their billionaire benefactors. They hate us. Because we're all real life examples that their chemical businesses are fatal to the ultimate health and survival of the planet and those who inhabit it.

 

[WillowJ]

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)?

Twitter is generally open. Usually you can see all someone's posts and everything that was said to them (search @TheirTwitterHandle or #TheirName ... caps not important in a search ). You need an account only if you want to post something yourself. But you can read everything freely.

It is not like facebook where some things can be public and some can be only for friends, and power users can pick even more settings. Twitter has only two: all posts public, or all posts protected (visible only to people you follow, or something like that). A business, politician, or news person would not have a protected account, and a celebrity rarely would. So anyone can go to https://twitter.com/ and use the search field to see what someone is saying on their account or what people in general are saying about anything.

 

[Ecoclimber]

To get a better understanding of what's going on, I did a bit of research and stumbled upon this site that explains the budgeting issues for fiscal 2016 that might put things in a realistic perspective.

NIH Riding High; Cuts, Cuts, and Cuts Elsewhere

AHRQ
Funding for the Agency for Healthcare Research and Quality (AHRQ) is completely gutted, starting October 1, 2015. (House Appropriations)
AHRQ would be cut by 35% in FY 2016. (Senate Appropriations)

CDC
The Centers for Disease Control and Prevention faces a cut of $245 million. (Senate Appropriations)

NIH
The House Appropriations Committee plans to boost NIH funding by $1.1 billion, while Senate Appropriators upped the ante by providing an increase of $2 billion.

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[Neunistiva]

To get a better understanding of what's going on, I did a bit of research and stumbled upon this site that explains the budgeting issues for fiscal 2016 that might put things in a realistic perspective.

NIH Riding High; Cuts, Cuts, and Cuts Elsewhere

AHRQ
Funding for the Agency for Healthcare Research and Quality (AHRQ) is completely gutted, starting October 1, 2015. (House Appropriations)
AHRQ would be cut by 35% in FY 2016. (Senate Appropriations)

CDC
The Centers for Disease Control and Prevention faces a cut of $245 million. (Senate Appropriations)

NIH
The House Appropriations Committee plans to boost NIH funding by $1.1 billion, while Senate Appropriators upped the ante by providing an increase of $2 billion.

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Are you trying to say our efforts might better be spent on pushing NIH for more funds?

 

[Ecoclimber]

Are you trying to say our efforts might better be spent on pushing NIH for more funds?

Boy, that's a tough one as we along with the IOM petitioned Dr. Collins of the NIH to fund ME/CFS research but Unger's ME/CFS multi-site project is funded by the CDC. It's a political nightmare, as both agencies have spent hundreds of millions of dollars on pet projects that are not part of their mission statment as stated in these two articles.

In political fight over CDC and NIH budgets, which party is telling the truth?

http://www.nationalreview.com/article/390311/budget-cuts-and-ebola-michael-tanner

Perhaps the community had an understandable emotional knee/jerk response before all the facts were made known. Maybe, we should have placed an 'if' in our petition that if the ME/CFS CDC budget is slashed then an increase in the ME/CFS research funding as recommended by the IOM committte should be increased at the NIH.

 

[Neunistiva]

Perhaps the community had an understandable emotional knee/jerk response before all the facts were made known.
http://wjla.com/news/local/in-polit...gets-which-party-is-telling-the-truth--108180

I've thought of this too, but then I figured it's good that they see as big and as quick response as possible so they know there is a lot of people who are very concerned with this issue.

We can work out the details laters, but waiting to see if maybe we got it wrong would probably have just made us seem uninterested.

 

[Roy S]

This is good to know. Can anybody post a link?

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"

 

[gretac]

This is good to know. Can anybody post a link?

Here's their webpage:
http://www.masscfids.org
The progress report above was from an email response to me, not posted on the website as far as I've seen

 

[Sasha]

Cort has posted a blog about this (I haven't read it yet):

http://www.cortjohnson.org/blog/201...drome-research-program-boon-or-bust-a-review/

 

[duncan]

If I am understanding Cort correctly, the CDC actually has been a stealth rock star for the ME/CFS cause all these years.

I hope Cort will craft a similar blog about the CDC's efforts with Lyme Disease, so I can learn they have actually been opening up TBD frontiers for the last 20 years as well.

 

[gretac]

Wow, Cort did an amazing job reviewing all the ups and downs of CDC research over the years, in a neutral, objective manner that evaluates what they did that helped and what they did that hindered our progress. It's great to have such a comprehensive - and comprehensible! - review all in one place.

 

[Nielk]

New blog from Jennie Spotila - http://www.occupycfs.com/2015/08/12/cdc-speculations-and-consequences/#comments

 

[Roy S]

Cort doesn't know everything he seems to think he knows. No offense meant to you, Gretac, but I think he is extremely good at sounding authoritative on any subject.

It took me a long time to learn what I know about lobbying in Washington. I know on this subject he doesn't really know what he's talking about in fundamental ways. His postings on @jspotila 's blog are exasperating. It's virtually impossible to respond to all of that stuff.
　
In the letter "By Robert and Courtney Miller and Cort Johnson" it states that "This study [the CDC multi-site CFS study] will end if the Senate’s budget stays at 0 for the CFS program.". That is not accurate and I hope it doesn't upset anybody too much.
　
　

 

[Bob]

In the letter "By Robert and Courtney Miller and Cort Johnson" it states that "This study [the CDC multi-site CFS study] will end if the Senate’s budget stays at 0 for the CFS program.". That is not accurate and I hope it doesn't upset anybody too much.

I agree that it is not a factual statement but i can't imagine that the CDC will continue to fund ME/CFS research at the same levels it does now, if at all, if the specific ME/CFS allocation is withdrawn by congress. It would be a perfect excuse for the CDC to get rid of ME/CFS from its research portfolio.

 

[jimells]

Wow, Cort did an amazing job reviewing all the ups and downs of CDC research over the years,

The problem I have with his essay is not the contents - it's what he left out that leaves me cold. I'm at a loss to understand why he is carrying water for CDC. The discussions of research papers on his website routinely mischaracterize what the studies actually say. When I read his essays then read the actual paper, it's like two different studies.

 

[Roy S]

to add to this previous post --
I was never sure why it happened and thought it would be best not to even try to find out. I thought it was Sen. Harry Reid's legislative aide just not doing her job well, but thought it better to be diplomatic since I didn't want to alienate her and we had no alternative senator on the committee. So I talked to fellow patient/activist Jerry Crum (deceased) in Nevada and explained the situation to him. He stimulated grassroots activism in the state and then there was a new legislative aide in Reid's office. Sheila was good.

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.
　

 

[alex3619]

Perhaps the community had an understandable emotional knee/jerk response before all the facts were made known. Maybe, we should have placed an 'if' in our petition that if the ME/CFS CDC budget is slashed then an increase in the ME/CFS research funding as recommended by the IOM committte should be increased at the NIH.

This only works in the short and medium term if we also require the CDC multisite study be taken over by NIH.

 

[alex3619]

Its no loss to lose the CDC in general. Its a loss if the multisite study is impacted. Its a HUGE loss if we do not stop our budget being totally axed, or at least visibly advocate for a better solution, even if that is improved NIH funding (which we need). This is political as well as scientific and medical.

 

[Ecoclimber]

Did I miss something? Did Cort just get hired to be the new public relations director for the CDC? Can't say that Robert and Courtney Miller have helped much either. It's the patients in the trenches on PR and elsewhere that fought hard and long with many losing their health over it to chalenge the NIH and the CDC to get the IOM report to show the correct nature of ME/CFS.

And then we get the mojo that the CDC was here along helping us. We patients must be suffering from delusional reality over the last thirty years. We were delusional to think that we were being abused, mistreated and scorned by skepticism among the medical profession for not receiving any treatment, considered outcasts, becoming homeless, confined to mental insitutions, sleeping in cars, losig our jobs, careers and relationship while at the same time we suffered. Oh how we suffered for lack of care with such horrific symptoms: minute by minute, hour by hour, day by day, week by week, month by month, year by year for the last 50 years. Who facilitated this gross miscarriage of treatment? NIH/CDC.How many patients did we lose to suicide...too many. And it's not what I am saying but what the IOM has said in refutation of Cort's comments on the wonderful NIH/CDC.

Seeking and receiving a diagnosis can be a frustrating process for patients with ME/CFS for several reasons, including a lack of understanding of diagnosis and treatment of the condition among health care providers and skepticism about whether it is in fact a true medical condition. Less than one-third of medical schools include ME/CFS-specific information.

Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed.

Seeking and receiving a diagnosis can be a frustrating process for several reasons, including skepticism of health care providers about the serious nature of ME/CFS and the misconception that it is a psychogenic illness or even a figment of the patient’s imagination

ME/CFS can cause significant impairment and disability that have negative economic consequences at both the individual and societal levels. At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives.

The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually.

ME/CFS is a serious, chronic, complex, multisystem disease that often can profoundly limit the health and activities of affected patients. Many health care providers are skeptical about the seriousness of ME/CFS, mistake it for a mental health condition, or consider it a figment of the patient’s imagination. Misconceptions or dismissive attitudes on the part of health care providers make the path to diagnosis long and frustrating for many patients. The committee stresses that health care providers should acknowledge ME/CFS as a serious illness that requires timely diagnosis and appropriate care.

This was the result of NIH/CDC classification of CFS as psychosomatic disorder treated by anti-depressants, CBT and GET. Straus and Reeves wanted this disease go away as Straus has reported many times through various media

There is too much of a paper trail and evidence to now rehabilitate the NIH/CDC at this stage. I just don't understand the whitewashing of the NIH/CDC at this time. I would be curious to know if Cort is receiving directly or indirectly renumeration for this article on the CDC and if so by whom?