Controversy continues over the Senate appropriations committee report’s recommendation that the CDC’s CFS program funding be eliminated for FY 2016. We have certainly debated the merits and faults of the program from just about every angle on this blog.
But the real question is: Why did the Senate committee recommend the elimination of funding? I can offer only speculation.
Hypothesis #1: Budget cuts were needed and ME/CFS was an easy target. This is the explanation most likely to be offered by the committee staff. It doesn’t really make sense though, at least not on a Division level. If you look at the chart on page 59 of the report, you will see that CFS was the only category in the Zoonotic Division to see a decrease from FY2015 funding. Every other category was kept stable or increased. I certainly agree that we are an easy target for cutting, given the void in our collective efforts on the Hill. But the overall Senate recommendation for CDC funding exceeds the budget for 2015, and $5 million is almost invisible when compared to the overall budget. Why were we singled out?
Hypothesis #2: Someone wanted to cut it because ME/CFS is unimportant. We are certainly well-acquainted with the misconceptions about ME/CFS. And it is entirely possible that someone on the Senate subcommittee ascribes to those misconceptions. But ME/CFS has been in the news more in 2014-2015 than at any time since the XMRV controversy. If no one working on the subcommittee (including staff) has heard of the IOM report, then we have great cause for concern, and our short-term prospects of increasing our visibility seem low.
Hypothesis #3: Someone wanted to cut it because the CDC CFS program is not producing the right results. This would be interesting. Perhaps there is a staff member who knows more about ME/CFS than we expect, and recommended cutting the funding because the program is doing more harm than good. If this is the case, this person could be a potential ally in a powerful place.
Hypothesis #4: CDC didn’t bother to fight for the program. I don’t have facts to back this up, but it seems like a foregone conclusion doesn’t it? At the highest levels, CDC has paid little attention to (and expressed little love for) the CFS program. There are two exceptions to this: when CDC got caught misappropriating funds from the program and when the early XMRV findings suggested it was a blood borne human pathogen. Other than those two occasions, CDC leadership has not been particularly interested. But even if CDC failed to fight for the funding, that doesn’t explain why it was cut.
Regardless of the reason(s) for the committee recommendation to cut the funding, the ME/CFS advocacy community is responding at full volume. There are multiple email and petition campaigns underway, as well as meetings in the works. We won’t know until September if these efforts are successful. But there would be some interesting consequences to success.
Consequence #1: Community seal of approval. To put it bluntly, the CDC’s CFS program has NEVER had the full force of the ME/CFS community on its side. Never. I am sure that CDC leadership is surprised, and Dr. Beth Unger must be gratified to be receiving such vocal support. This campaign in support of program funding opens a new chapter in CDC/community relations.
Consequence #2: Imprimatur. How will CDC interpret the ME/CFS community’s sudden turn around? I think it is unlikely that anyone at CDC will look at the complexity of the community’s discussion. Most people who are supporting the program funding are doing so because of the multi-site study, or just the basic principle of “don’t cut our funding.” Very very few advocates are endorsing the CDC’s education campaign. But this distinction will not be acknowledged by CDC.
Instead, I predict that CDC will use the advocacy support as an imprimatur on all their ME/CFS efforts. They will be able to say that the program has the vocal support of ME/CFS patients and advocates. When they roll out the latest education materials, when they discuss the multi-site study, or when they make presentations about the program as a whole, CDC will say that the ME/CFS community supports it.
Some readers may say that CDC would never twist the facts this way. But all’s fair in politics. NIH twisted the facts of the letter signed by 50 ME/CFS experts in support of using the Canadian Consensus Criteria. In his August 11, 2014 letter to Representative Zoe Lofgren, NIH Director Dr. Francis Collins said, “This is a critical, unmet need in the area since there are very few ME/CFS clinician-scientists pursuing this line of research (for example, the advocacy groups identify approximately 50 ME/CFS clinicians and scientists world-wide who are considered experts in this field).” Do you see how skillfully this was done? The fact that 50 experts signed the letter, combined with advocates touting that letter as definitive on the CCC, was twisted and fabricated into the statement that advocates identify only fifty experts worldwide. Masterful politics, and CDC excels at this too.
Consequence #3: Bargaining chip. There is a powerful and positive consequence if the program funding is continued. ME/CFS advocates will be able to claim that we got the funding restored, and that gives us power with CDC. If we can get funding restored, we can just as readily get it taken away. I hope that the leaders of the current advocacy efforts realize this.
The petitions and letter writing and meetings may be successful in securing program funding in 2016. This is being done, as far as I know, with no advance promises from CDC or Dr. Unger to make the changes we want to see (particularly in the education campaign). CDC could take the money and run, using this campaign as a shield for whatever they plan to do next. Or advocates could use the success to get CDC to come to the table and work to improve the program.
If flexing the advocacy muscle succeeds, then we must follow through to ensure the program improves. And if CDC fails to do so, then we should flex the muscle to end that funding in 2017, or at least attach so many strings of Congressional oversight that CDC has to comply.
Because one thing is for certain: if this is the beginning of a new chapter in CDC/community relations, that the chapter must benefit ME/CFS patients. Otherwise, the whole effort will have been a waste.