In a budget agreement announced early Wednesday morning, funding for the US Centers for Disease Control’s (CDC) ME/CFS program was restored to the full $5.4 million. The omnibus budget bill is expected to pass both houses on Friday.
CDC funding for ME/CFS had previously been cut to $0 in the proposed 2016 budget.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]When bloggers, organizations, and grassroots activists work together, we can achieve concrete outcomes in Washington.[/pullquote]
This outcome is the result of an effort by numerous advocates and organizations including Solve ME/CFS, Mass CFIDS and #MEAction to put pressure on Congress to restore funding.
In August, blogger Jennie Spotila of Occupy CFS discovered that funding had been cut to zero. Solve ME/CFS drafted a letter constituents could send to congressional staffers, asking funding be restored. #MEAction hosted the letter as a One Click Politics campaign.
The sheer volume of outreach generated by the letter writing campaign – thanks to the community’s overwhelming response – led to an immediate response from Senate Appropriations staffers and meetings with Solve ME/CFS Initiative and the Massachusetts CFIDS/ME & FM Association.
While the outcome continued to be uncertain all fall – funding could not be restored unless the budget cap was lifted – Senate staffer Chol Pak informed Solve ME/CFS and MassCFIDS Wednesday morning that the $5.4 million in CDC funding was restored.
In addition, funding for the US National Institutes of Health was increased by $2 billion, the largest increase in a decade.
A double edged victory?
When the cuts were uncovered last summer, they generated debate and renewed focus on the CDC’s mixed record when it comes to Chronic Fatigue Syndrome.
Setting aside a long and difficult history – misappropriation of Congressional funds, support of psychogenic research during periods of the program’s history – the CDC’s more recent record hasn’t been so great. It’s Continuing Medical Education (CME) and website still promote Cognitive Behavioral Therapy and Graded Exercise as treatments. It remain unclear how the Institute of Medicine report will be integrated into their new medical guidelines. Or exactly whether their plans for massive medical outreach in 2016 will end up doing more harm than good.
At the same time, the $5.4 million was also supporting the CDC’s multi-site study, then in its fourth year. And there is an argument to be made – and this is the one that #MEAction largely followed – that allowing the funds to be cut without raising hell would set a bad precedent on the Hill with respect to Congressional support of our disease. We believed we could not afford to be silent.
What the CDC needs to know[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]if we are going to fight to get their funding restored, then we need a much bigger say in how those funds are spent.[/pullquote] The lesson we can learn from this experience is that when bloggers, organizations, and grassroots activists work together, we can achieve concrete outcomes in Washington. The message we think the community needs to bring to the CDC is that if we are going to fight to get their funding restored, then we need a much bigger say in how those funds are spent.
It is unacceptable to continue to ignore recommendations from the Chronic Fatigue Syndrome Advisory committee on medical education reform. Clinicians with expertise in ME and CFS need to review medical education content before it is disseminated. It is imperative that the CDC deeply integrate patients into the process of policy making, research, and medical education at the agency. If they do this, they will not only produce better outcomes – after all, at the end of the day, how better to find out what is best for patients than by asking the patients themselves? – they will find in the patient community an informed and valuable partner.
The next time around, we can just as easily mobilize our energy in the other direction.
$2 billion increase in NIH funding
The other big news coming out of the budget announcement is that NIH budget is set to increase by $2 billion.
NINDS is getting $1,696,139,000 in funding in 2016 and NIAID is getting $4,629,928,00.
You can read a summary of the Health and Human Services (HHS) portions or can see the entire 2009-page bill.
Help us continue the fight
In the coming months, #MEAction along with other organizations and activists will be fighting to make sure the CDC budget is spent appropriately and that we get our fair share of the $2 billion increase.
Help us continue to fight to get serious research funding for ME at NIH and equal treatment across all the federal agencies. Support our work by making a recurring donation.
We will have more details soon on funding and how you can help in our efforts in Congress, NIH, and the CDC.
Editor’s note: this article previously stated that the CDC supported “a largely psychogenic research agenda for much of the program’s history.” It has been amended to reflect that a psychological approach was taken during phases of its history (with no claim as to whether this reflects the majority of its research support).