Jennie Spotila is an ME/CFS patient and advocate who has done extensive research on government funding for CFS. She recently discovered that the latest Senate committee report for CDC appropriations appears to recommend completely defunding CFS research.
She points out that the cut is not a done deal as the House and Senate need to reconcile the bills, and the House proposal includes $5.4 million in funding for the CDC’s CFS program. We also don’t know why the committee report does not include CFS funding. But if patients and allies want to ensure funding is kept, it is vital to have our voices heard.
There is a lively debate on her blog about whether advocates should fight for CDC funding considering how poorly CDC has been treating CFS patients over the past decades. Some believe we should absolutely oppose the funding cut. Many believe that the CDC has done more harm than good and we should let it elapse. Still others think that regardless of the CDC’s track record, doing nothing would send the wrong message to Congress. Jennie writes:
[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]
Multiple sources have expressed deep concern to me about the prospect of no funding for the CDC’s CFS program. Among other things, the CDC’s multisite study would be in jeopardy. I certainly respect these concerns, and I also respect the fact that the multisite study is an important epidemiological effort that provides revenue to the seven contracted participating sites. But there are powerful arguments on the other side too.[/pullquote]
For her part Jennie thinks that while the program is “not 100% bad,” on balance, when she weighs the benefits and the harms, there are too many issues at the CDC for them to use the money effectively. She does not think that the CDC’s current approach to CFS is worthy of her support:
[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””]I want a CDC program that studies my disease, and that recognizes the central features including PEM. I want CDC to take the lead on educating physicians about my disease, so that all patients can be accurately diagnosed and appropriately treated. This means the end of blanket endorsements of graded exercise therapy and cognitive behavioral therapy as treatments. I want “chronic fatigue” to be excised from the CDC’s approach to ME/CFS once and for all.[/pullquote]
If you want to ensure the Senate hears your voice– whether or not you would prefer the CDC receive continued funding for their CFS program– then you can email the relevant senate subcommittee members at using this very simple form. You can write your own letter or make any edits that you would like to the sample letter and add your own story.
[button_color url=”http://www.occupycfs.com/2015/08/04/no-cdc-funding-for-cfs/” content=”Read the full post at Occupy CFS” target=”]
You’re Invited: The Beth Mazur Innovation Prize Fundraiser
November 1, 2024
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You are cordially invited to The Beth Mazur Innovation Prize Fundraiser on Wednesday, November 13th at 2pm PST/5pm EST. Beth Mazur, who co-founded #MEAction was a kind and compassionate human being. She cared deeply about the ME and the Long COVID communities. She also cared deeply about innovation, new creative ways to solve problems that
10 thoughts on “Should we oppose the Senate proposal to cut CDC funding to zero?”
I think we should oppose the cut in funding to the CDC. We all need relief from the suffering of this disease. In additon it makes good economic sense. PWCS are not only forced to collect disaability, but now many of us need housing, medical and other expenses. This costs tens of thousands of dollars per year per patient. The cost to the economy has to be tremendous. If there was a cure we could go back to work and become taxpaying citizens again.
One would hope that the people at the CDC would realize that they are barking up the wrong tree with graded excercize, etc. It’s a terrible excuse for good medical science. That’s where the answers are.
Hi MEAction,
For anyone trying to decide whether to ask the Senate to reinstate the CDC funding here are some suggestions: 1) read Osler’s Web, by Hillary Johnson. It is difficult for me to summarize such a detailed and extensive work. I quote the Kirkus Review from the back cover which uses words such as “hasty CDC investigation” to describe this institution’s work on the Incline Village outbreak; “CDC epidemiologists cynical about the reality of an illness that did not fit any disease model they were familiar with…” Ms. Johnson details the numerous ttimes the CDC diverted CFS research funds designated by Congress to other areas, and the CDC’s falsification of reports to Congress on the use of these funds. Jennie Spotila makes excellent points about the questionabale service currently provided by the CDC. It appears little has changed since Ms. Johnson’s examination of the publice health service’s involvement in ME in the 1980’s/90’s. If people want to risk continuing down the same road, by all means ask the Senate to reinstate the research funds. If we want meaningful progress and support, ask the Senate to divert these funds to institutions that are honest and sincere in their work to find treatments and a cure for this very real, very devastating neuroimmunoendocrine disease.
OPPOSE IT!
There is no question that the CDC has been horrible for this disease, reprehensible in many instances. However, someone (forgive me, I can’t remember who or exactly where and blame brainfog) recently made the excellent point that when privately or NIH funded research eventually finds actionable results (e.g. biomarkers and test for them) we want infrastructure in place to deal with that on a national level as soon as possible. Creating a new program from scratch, not to mention convincing people to create a new program could be a serious hold-up, costing a lot of time and money.
Unfortunately, the questionable information already produced by the CDC, and this terrible name, will still be out there if the program is shut down. It will still carry the authority of the CDC brand. With no new information to replace it, the existing information becomes older and older suggesting that we “closed the book” on this illness and there is nothing left to find. Unfortunately the lack of integrity in the CFS program has not compromised the CDC’s reputation among medical professionals or the public. Lack of a CDC program, regardless of erroneous information, abuse, misappropriation, implies that this is not an actual disease.
The people that are cutting our funding aren’t doing so because the CDC has been horrible to “CFS”; they’re doing it because they see the disease as something that doesn’t deserve funding. On that principle alone I think we should dispute this. I just wish we could also keep the CDC from actually using the funds to create more problems.
Hello.
I think the CDC has mismanaged CFS from the start, and this $4.5 M is probably used as a slush fund for them to spend on anything else they want.
It’s my opinion that we should tell our Senators that the CDC is doing a lousy job, and that we want the funding moved elsewhere- where it will have more of an effect. I don’t think the NIH is necessarily the best place to move it. Perhaps a better place is PCORI? And make it so that PCORI must dedicate the funding specifically to ME/CFS/SEID, and grants must be delivered on an accelerated timeline.
Let’s be relentless, and let’s make our own solutions.
Hi everyone,
I deleted a comment here that included a specific personal attack without any substantive evidence or information regarding that attack. It was a judgment call, one I hope we can make in the future not on an ad-hoc basis but on the basis of a clearly articulated comment policy. We will be working on writing and disseminating that policy this week.
I just want to affirm that we are not aiming to censor anyone’s thoughts, ideas, strategies – on that front we aim to remain neutral and incorporate a diverse range of viewpoints. However, we do aim to make #MEAction a safe space for all advocates to engage with each other and direct their anger OUTWARD.
A primary reason for doing this (other than that we deeply believe that an internally cooperative culture will allow us to more effectively direct our energies toward our outward goals) is that there are many patients who avoid engaging in high temperature conversation because their health won’t allow it.
There is a fine line between creating a set of rules to foster a healthy and vibrant community and censorship. We hope a written set of rules can help make those boundaries more clear. We look forward to hearing everyone’s input on those rules.
Anyone who has any questions about that, please feel free to reach out!
Best,
Jen
It is a sad statement of the condition of the CDC when chronically ill people logically fear that funding CDC research of their disease may do more harm than good.
I have been ill since 1987. My pc once told me there would be no cure for me in my lifetime. I learned to accept this comment as doctor’s had little compassion to treat me. Now my son is now ill with this. I want to have hope for him but when I hear funding is being cut it,s hard to have hope. I can,t even receive the medication a rheumatologist was trying on me that improved my quality of life because of all the restrictions Massachusetts has put on meds that have any pain relievers in them. Everyone gets punished for those who abuse their meds. Now at 66 years old I barely go out or am in bed each week. I can,t exert myself with getting ill. My son could be losing his job, like I did because he misses so much work. If so many are ill why is the government ignoring us?!
The deletion of funds for ME/CFS is an action by an ignorant group of our public officials who have apparently cut the funding because a total lack of understanding and misconception of the severity of this illness whose only knowledge of this illness is based on reading the name of the disease and and deciding that it does not seem to be worthy of funding and no one will care if we cut it.We should not requesting that they reverse their position but should demand it and bring their ignorance to the attention of anyone and everyone we can.
We need to know where and how the cut originated, and for what reason. This is important info and I am too weak to try to hunt it down. It is surprising coming just after we got the allocation restored for FY 2016. Meanwhile, bitch like heck for money, more money, still more money and THEN bitch about how and where it’s being used. No money in the budget — no chance. And it’s totally weird that the money is being cut when the multi-site study has a clear need and could help improve what is told doctors.
To quote a song from Cabaret “money makes the world go round…….”
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