I was alarmed to discover today that for the 2017 fiscal year, the CDC is proposing to eliminate its ME/CFS programs, totaling cuts of $5.4 million. The only other place I have seen these cuts referenced is in the #MillionsMissing Me/CFS protest demands. How did this slip under the radar? I will be contacting CFS/ME advocacy groups and members of congress regarding this issue, and I urge you to do the same. This is not the first time elimination of the CDC’s CFS/ME funding has been proposed. During congress’s review of the proposed 2016 CDC budget, the $5.4 million set aside for CFS/ME was gutted to $0. The CFS/ME patient and advocate community responded in uproar, resulting in the reinstatement of the full $5.4 million in funding. Much of this effort was lead by the Solve ME/CFS Initiative, #MEAction, and MassCFIDS. The CFS/ME community has yet to discover the original reasoning behind the proposed cuts to the 2016 budget. I think it would be valuable information given that the same cuts have been proposed for the second year in a row. The CDC publishes a justification of their budget request for congress each year. The 2017 budget request included the cuts to CFS/ME, making me wonder if the proposed funding changes in 2016 were also directed by the CDC rather than by congress. The CDC budget justification for 2016 did, however, include CFS as part of its infectious disease budget on page 112 but did not list a dollar amount. It would have been a convenient way out for the CDC if they wanted to end their CFS/ME work. In the document, the CDC lists its reasoning for eliminating its CFS/ME program on page 587:
“The FY 2017 budget request reflects the elimination for Chronic Fatigue Syndrome (CFS). The goal of CDC’s current CFS program is to develop tools to gather and analyze surveillance data and to educate clinicians and the population based on the results of evidence-based studies. Over the past five years, NIH has been funded at a similar level to conduct biomedical research on CFS. CFS affects between one and four million people in the US, and this funding could be used to have a greater programmatic impact across CDC.”
If I’m understanding this correctly, their sole rationale for eliminating the program is that the money can be put to better use elsewhere. Lovely. One more indication of how seriously the CDC is treating this debilitating disease. Perhaps this is an indication that the CDC has declared ‘mission accomplished’ on its educational campaigns regarding CFS/ME. Let’s run through a quick progress report on the results of their efforts:
Is it still harder to find a CFS/ME literate doctor than tracking down Carmen Sandiego? YES
Is the dismissal, belittlement, and subjugation received from most doctors when your world is falling apart because of this disease more traumatizing than a hurricane destroying your home? YES (True story, courtesy of Dr. Nancy Klimas)
Has the CDC modified its recommendations and educational campaigns in response to the Institute of Medicine’s 2015 report which recommended post exertional malaise be a primary diagnostic criterion and declared CFS/ME a severe and definitively biological disease? NO, unless proposing to cut funding is considered a response.
To put it mildly, the CDC does not have the best track record regarding its treatment of CFS/ME. The CDC is a primary reason most physicians are inadequately and incorrectly educated about CFS/ME, but they appear to be shifting towards the right direction. Beth Unger, MD, PhD, Chief of the Chronic Viral Diseases Branch at the CDC, referenced planned efforts to update educational materials to include the Institute of Medicine recommendations in a public conference call in October 2015, according to solvecfs.org. If the CDC cuts funding to CFS/ME, I doubt this update will ever take place. Jennie Spotila at Occupy CFS made her own interesting case against reinstating CDC funding when the story broke regarding 2016 cuts. Her argument focused on the organization’s history of failed and misguided attempts at addressing CFS/ME awareness in the public and medical community. I can understand this line of reasoning, but I feel strongly that we as a community need to hold tightly to any sources of funding we can get. I think it is more productive to advocate to maintain and increase current funding while pushing to improve the programs the CDC is running rather than eliminate the CDC’s involvement in CFS/ME altogether. The CDC remains a mainstay in the dissemination of medical information to the public and the medical community. The CDC has also been conducting the Chronic Fatigue Syndrome Multisite Studies. The studies aim to combine the data of hundreds of patients from seven of the best CFS/ME treatment clinics in the United States to learn more about the disease, determine subcategories, and hopefully direct future treatments. It is the largest study of its kind in CFS/ME research, involving over 400 patients, and has been underway since 2012. The CDC has made no statement regarding the impact eliminating funding would have on this currently underway study. I fear it could result in the last 4 years of work on the project going to waste.
Last year’s success in reinstating the CDC’s budget for CFS/ME was an encouraging reminder that patient advocacy can have a tangible impact. It often feels like we are screaming into the cavernous dark, our voices and our efforts dissipating into the ether. But sometimes, just sometimes, our requests fall on receptive ears. It’s time to put on our advocacy hats, or capes, and write to our congress members. This community has done it before, and we can do it again. Members of the Senate or House Committee on Appropriations are the most productive people to contact, as they are the ones who will vote to approve or make alterations to the CDC’s proposed budget. It is important to note that even if Congress recommends allocating funding towards CFS/ME, the CDC can choose to use the money for unrelated causes. For this reason, we should also contact CDC officials. One thing is certain, inaction will bring a swift and deadly axe down on the CDC’s CFS/ME work, and it will be no easy task to reinstate CFS/ME funding once it is gone.
*In an earlier version of this piece, I said I would post contact information of members of the Senate and House Committees on Appropriations and a form letter to use when contacting them. Unfortunately, I fell into a prolonged crash after writing this piece and was unable to do that. I can only offer my sincere apologies.