ME/CFS advocates focus almost exclusively on research funding from the National Institutes of Health, and with good reason. But now it appears that funding for the Centers for Disease Control’s CFS program may be at risk in the 2016 appropriations bill. This is not a done deal, and many people believe we should advocate for continued funding. I do not.
Funding or No Funding?
The first step in the federal appropriations process is at the committee level in the House and the Senate. Each committee approves the text of an appropriations bill, and submits an accompanying report for consideration by Congress.
On the House of Representatives side, the appropriations committee report recommends $5.4 million for the CDC’s CFS program (see page 39 of the report). This is the same amount of funding as in 2015. The House appropriations bill does not specify funding for CFS or any other program within the Emerging Zoonotic and Infectious Diseases branch, but only recommends aggregate funding (see page 44 of the bill).
On the Senate side, the appropriations committee report explicitly declines to include appropriations for the CFS program (see page 59 of the report). It is the only program in the Zoonotic branch that the committee declines to fund in 2016. The Senate appropriations bill, like the House bill, only recommends aggregate funding for the Zoonotic branch (see page 52 of the bill).
So the House and Senate committees have approved the appropriations bills. The House committee report recommends CDC CFS funding, and the Senate committee report does not. The next step in the process is a vote in each house of Congress on the appropriations bills. However, with Congress now in a five week recess, these votes won’t happen until September.
It is very important to understand a couple of things. First, neither of these recommendations is a done deal. The House and Senate have to vote on their versions of the appropriations bills. You can track the status of each bill as it winds through the process in the House and the Senate.
Second, even after these bills pass in the House and Senate, the differences between them have to be reconciled. The House bill allocates $460 million to the Zoonotic branch, while the Senate bill allocates $388 million. The many differences between these bills have to be reconciled in a budget conference, and then the reconciled bill has to go back to the House and Senate for a final vote. All of this has to be completed before September 30th in order to get the bill to the President and avoid a government shut down.
Third, the conference reports are not binding. Just because the Senate recommended killing the CFS funding does not mean CDC has to do it. CDC can spend money on the program even if the conference report does not recommend this. However, if CDC is looking to cut back or kill the CFS program, then the committee report certainly gives them political cover to do so.
Fourth, we don’t know why the Senate committee report declined to recommend funding. Was it because the committee didn’t hear from the public about the importance of the program? Was there a staffer who advocated this? Or was it simply a matter of looking for places to cut, and this was an easy target?
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.
Why Not Support CDC Funding?
Let’s not forget that the multisite study has design flaws, although it did provide useful data to the IOM committee as they constructed the new SEID criteria. The multisite study is, of course, not the only effort in the CDC’s CFS program. The much maligned ToolKit and Medscape education units are part of the program too. CDC has resisted many recommendations by the CFS Advisory Committee, such as putting a “black box” warning on exercise recommendations. Furthermore, CDC has made no public statement about whether it will adopt the IOM’s SEID diagnostic criteria (or even just post-exertional malaise as a required symptom), and this is inexcusable given that the IOM report was published six months ago.
The potential danger that the CDC education program can pose to ME/CFS patients was underscored last week by a new posting on FedBizOpps. The post is a “Sources Sought” request from CDC for a new education effort, and the details are very troubling.
“Sources Sought” is a specific kind of request for information. Basically, the government needs to establish whether there are sources or contractors who can do the work under consideration. In this request, CDC is looking for contractors who can produce radio segments and interviews to educate the public about CFS. The idea is expressly modeled on the Memory Loss Initiative, which has collected more than 1,800 personal stories from people living with memory loss.
On the surface, this sounds like a great idea, right? I mean, what advocate does not want the personal stories of people living with ME/CFS to be publicized? But read the posting closely. The CDC uses the name “CFS” with no mention whatsoever of ME. The description of CFS is drawn from the Fukuda definition, not IOM SEID or any other definition that requires post-exertional malaise.
Furthermore, the CDC modified the posting yesterday. The original posting acknowledged that most physicians did not know how to treat and manage the illness, but that has been deleted. Of course, who is responsible for the lack of competency among physicians? CDC and the medical associations. The original version also stated, “CDC will identify subject matter experts to serve as a steering committee or reviewers of the content.” Not surprisingly given the reaction among some advocates online, that statement has also been removed. But don’t let that fool you. This is a Sources Sought request, not the actual contracting opportunity. CDC is unlikely to pay a contractor money and not retain control over the final product in some way.
Not For Me, Thanks
This FedBizOpps posting is just the latest example of how CDC does not understand this disease. CDC refuses to admit that PEM is a distinguishing feature of the disease; refuses to acknowledge that exercise can be harmful to people with ME/CFS; refuses to use any aspect of the IOM report; and refuses to specify an appropriate diagnostic code. And many of CDC’s actions regarding this disease over the last thirty years have been harmful to patients, or just plain wrong.
Personally, I don’t want to pay CDC to persist in its approach to ME/CFS. Why should we? What’s in it for patients? I see no reason to invest my limited capacity in advocating for funding for a CDC program that is largely mistaken and misguided.
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.
Has the multisite study been a step in the right direction? Yes. Does this mean we should support funding for the CFS program? No.
The FedBizOpps notice, the silence on the IOM report, and other CDC initiatives are based on the erroneous view that Fukuda is an adequate definition for the disease and that PEM makes no difference in how one should diagnose and treat patients. If most patients are undiagnosed, it is because CDC and the public health complex have utterly failed to educate physicians about this disease, in part because of the dedication to Fukuda and Reeves’ empirical definition. Every single one of us has been told, early and often, that we need to exercise our way out of this disease. Who is responsible for the pervasiveness of that “treatment” approach? CDC.
I won’t be writing to Congress to ask that the CDC CFS program funding be cut. But I most definitely will not be writing to support the funding, either.
When I weigh the positive things about the CDC’s CFS program against the harmful and negative things, I come up short. When I think about the harm done by CDC’s persistent recommendations for exercise, I come up angry. The program is not 100% bad, and I know that many people in the ME/CFS community believe it should continue. But overall, CDC’s current approach to this disease is not worthy of my support.