What the CDC needs to know about the $5.4 million funding restoration

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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).

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7 thoughts on “What the CDC needs to know about the $5.4 million funding restoration”

  1. [note: the forms above might be filled incorrectly because i use large fonts and they only show part of the letters. is this fixable?]
    “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.”
    that is a message they will never listen to, now that we have given them everything they wanted.

  2. This post contains several common mistakes.
    This, for instance, not true.
    “support of a largely psychogenic research agenda for much of the program’s history – the CDC’s more recent record hasn’t been so great. It Continuing Medical Education (CME) and website still promote Cognitive Behavioral Therapy and Graded Exercise as treatments.”
    The CDC has never had a largely psychogenic research agenda. In fact the vast majority of it’s research has been pathophysiological. Please see this blog for more – http://www.cortjohnson.org/blog/2015/08/11/the-cdcs-chronic-fatigue-syndrome-research-program-boon-or-bust-a-review/
    It also is not true that the CDC includes CBT/GET in it’s Treatment section. It includes it in its Activities and Exercise Section.
    This is not to my knowledge true either
    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.
    The CDC has worked closely with CFSAC members on its website and to my knowledge those members have publicly thanked the CDC for the access they have received.
    If MEAction reviews the latest educational video’s and courses produced by the CDC for ME/CFS they will find them all lead by ME/CFS experts such as Dr. Bateman, Dr. Lapp. and Dr. Klimas.
    The latest example of the CDC’s ongoing efforts to integrate patients was a letter sent out to apparently every ME/CFS organization that asked for their collaboration in their latest educational efforts.
    “We would like to invite your organization to participate in this collaboration by nominating a representative to serve as a member of the Technical Development Workgroup (TDW).”
    Here are the authors of the latest continuing education effort produced by the CDC
    http://www.cdc.gov/cfs/education/diagnosis/index.html
    Course Developers and Subject Matter Experts
    James F. Jones, MD
    Medical Research Officer, Centers for Disease Control and Prevention
    Lucinda Bateman, MD, MS
    Director, Fatigue Consultation Clinic
    Nancy Klimas, MD
    Professor of Medicine, Nova Southeastern University
    Connie Luedtke, RN
    Nursing Supervisor Mayo Clinic Fibromyalgia and Chronic Fatigue Clinic,
    Mayo Clinic
    Ann Vincent, MD
    Assistant Professor of Medicine
    Mayo Clinic
    Here are the members of Medscape CME program on a Case Based Course for ME/CFS
    http://www.cdc.gov/cfs/news/features/medscape-case-based.html
    Lisa W. Corbin, MD
    Medical Director of Integrative Medicine, University of Colorado Hospital, Associate Professor, Division of General Internal Medicine, University of Colorado Denver School of Medicine, Denver, Colorado
    Anthony Komaroff, MD
    Simcox-Clifford Higby Professor of Medicine at Harvard Medical School in Boston, Massachusetts
    Ben H. Natelson, MD
    Professor of Neurology, Albert Einstein College of Medicine, Director Pain and Fatigue Study Center, Beth Israel Medical Center, New York, New York
    Peter Rowe, MD
    Sunshine Natural Wellbeing Foundation Professor, Director, Children’s Center Chronic Fatigue Clinic, Johns Hopkins Medicine, Baltimore, Maryland
    Here are the member of the Challenges in Primary Care Medscape Program
    http://www.cdc.gov/cfs/news/features/cme.html
    Anthony Komaroff, MD
    Simcox-Clifford Higby Professor of Medicine at Harvard Medical School in Boston, Massachusetts
    Lucinda Bateman, MD
    Founder of the Fatigue Consultation Clinic, Co-founder and Executive Director of the Organization for Fatigue and Fibromyalgia Education and Research, in Salt Lake City, Utah
    Charles Lapp, MD
    Director of the Hunter-Hopkins Center, and Assistant Consulting Professor at Duke University Medical Center, in Durham, North Carolina
    Instead of ending with a warning – we can turn against at any point – it might have been more appropriate to highlight the changes that have occurred to open the CDC to more collaboration since Dr. Unger has taken over.

    1. Hi Cort,
      Thanks for your feedback. The article has been amended slightly to include more precise language, i.e., that psychological research was pursued during periods of the CDC’s history – important context to invoke in order to understand the large skepticism many patients still have regarding the CDC.
      It is very encouraging that patient organizations are being invited to participate in the revamping of their medical education program. We received our invitation after this article was published.
      As for the rest, I will leave others more knowledgeable on the details to comment (or not).
      Jen

      1. Thanks Jen,
        Unfortunately the blog still does tar Dr. Unger’s reign at the CDC – five years or so after it began – with a brush she did not yield and shows no sign of yielding. The psychiatric studies largely occurred during a relatively short period (2009-2012) at the end of Dr. Reeves reign when Christine Heim and others caught his year.
        Since Dr. Unger has taken over the CDC’s CFS program she has meet repeatedly with patient groups and has involved CFSAC in altering Dr. Reeves website and ditched the CDC’s Toolkit.
        As I noted (and provided evidence for) contrary to the blogs assertions that ME/CFS experts have not been included, they have actually been HEAVILY involved in the preparation of the CDC’s educational materials. You can find them and the courses they’ve worked on with the CDC here – http://www.cdc.gov/cfs/education/index.html
        While some people find repugnant the idea that CBT/GET can be helpful I do not provided the courses are done correctly. Dr. Klimas applies her own version of “GET” with her patients. The CDC’s section on Activity and Management is I believe quite well done and now has a section for the severely ill and states such things as “If patients experience a worsening of symptoms, they should return to the most recent manageable level of activity.”

    2. Cort
      You referenced CDC’s Diagnosis and Management CME. That CME states “Adaptive pacing therapy, cognitive behavioral therapy (CBT), or graduated exercise therapy (GET), along with specialist medical care appear to be beneficial for some patients [26].” Reference number 26 is the PACE trial. Other Oxford definition studies are also included as support for recommendations for CBT and GET.
      CDC also still lists childhood trauma as a risk factor on its website in spite of numerous concerns being raised with this claim over the years. The claim that childhood trauma is a risk factor is based on an Empirical study which the IOM report discredited saying it was overly broad and included PTSD and depression patients who might be expected to have experienced childhood trauma. (http://www.cdc.gov/cfs/news/features/childhood_adversity.html)
      Regarding the history of CDC’s research in this disease, in a 2011 article, Tuller quoted critics as stating
      “The agency has downplayed or dismissed abundant evidence that CFS is an organic disease, or cluster of diseases, characterized by severe immune-system and neurological dysfunctions as well as the frequent presence of multiple viral infections. Instead, say the critics, the agency has focused major resources on investigating proposed psychiatric and trauma-related factors and associations.” Reeves said that Incline Village was mass hysteria. A number of studies looked at maladaptive personality factors and stress. CDC has never followed up on the Incline Village clusters even when requested by CFSAC.
      Dr. Unger has been more collaborative. But CDC has continued to resist the idea of PEM being mandatory (e.g. numerous discussions at CFSAC and CDC’s input to IOM was that a limitation of CCC) and in August, a CDC staff person continued to defend the use of the EMpirical definition findings in go forward medical education even though those patient cohorts would not be the same as the IOM criteria.
      Regarding the latest effort by CDC – it is good that they are including patients and experts in a working group. But what remains to be seen is what role our experts have in making final decisions on the final material – as opposed to just providing “input.” CDC’s track record on this point is not good.

      1. Thanks Mary – Let’s look at this statement:
        Adaptive pacing therapy, cognitive behavioral therapy (CBT), or graduated exercise therapy (GET), along with specialist medical care appear to be beneficial for some patients.
        Please note what they are not saying: they are not saying that CBT/GET are cures, or that they are beneficial for ALL patients – they are saying that CBT/GET APPEAR to be beneficial for SOME patients and, in fact, that’s what the studies show – not just for ME/CFS – but for many diseases.
        You didn’t mention the other childhood trauma study which was based on the Fukuda criteria. Childhood trauma has been linked to many diseases that appear later in life including coronary heart disease (http://www.ncbi.nlm.nih.gov/pubmed/26389699), rheumatoid arthritis (http://www.ncbi.nlm.nih.gov/pubmed/23497830), autoimmune disorders (http://www.ncbi.nlm.nih.gov/pubmed/15259836). Instead of isolating ME/CFS as some sort of psychological disorder as one might suspect the childhood trauma findings could be viewed as placing ME/CFS in a broad category of inflammatory disorders with similar findings.
        The CDC is not a saint and it has at times done psychological studies but Tuller in my opinion simply goes too far. Instead of cherry-picking events or studies or quotations all one needs to do to is to assess what the CDC is focused on is to see where they’ve put their money over time. Simply check out the studies (http://www.cortjohnson.org/blog/2015/08/11/the-cdcs-chronic-fatigue-syndrome-research-program-boon-or-bust-a-review/) and you’ll see an broad emphasis on epidemiological and pathophysiological studies – an emphasis that has become more focused with Dr. Unger
        I don’t know you assess the CDC’s track record on expert input but I assume that ME/CFS experts such as Dr. Klimas and Dr. Bateman and others would not continue to work with the CDC if they felt their input was not being heard. To the contrary Dr. Klimas at the NSU patient conference said the CDC was doing good and exhorted ME/CFS patients to give the CDC a break. Dr. Peterson said much the same thing recently.
        Whatever has been said the work the CDC is doing and has done suggests that they believe PEM an integral facet of ME/CFS. The CDC has done several exercise studies – they are the only ones so far to validate an immune measure during exercise – and an exercise study, of course, major feature of the multisite study.
        With regards to the ED (the “evil definition) – I understand the concerns. On the face of it it appears to be a big problem but Jason’s work found while it performed less well that the CCC in identifying new ME/CFS patients it didn’t perform that much worse and the surprise finding was that the CCC didn’t do all that well. Hence the need for advocates to press for a research definition that produces cohorts we can all count on.
        In the end the ED has not had the negative impact we were worried. The studies done with it have generally had findings similar to those done with the Fukuda definition. It will disappear as will the Fukuda, Oxford, CCC, ICC and others when a new research definition is produced.
        Plus having the CDC disavow the definition that they created and go back to Fukuda or to use the CCC would not be easy for any institution. Plus with the emphasis on the multisite studies, now, few studies are probably being using the ED.
        The ED at this point in time is, therefore, not in my opinion a significant issue. It is fated to disappear. Far better to focus on getting a new research definition done.

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