CDC CFS Program Changing Its Stripes, NIH Lags Behind in 2012

Posted by Cort Johnson

After looking at private/non-profit research efforts in 2012 we turn to what the  Feds (CDC, NIH, DOD) will be doing….

Centers for Disease Control 

Dr. Unger is head of the CDC's CFS research program

The CDC approach to ME/CFS under Dr. Unger is changing and for the better. Increased outreach and collaboration have become hallmarks of Dr. Unger’s CFS CDC program. 

Physician Education

Three Continuing Medical Education (CME) courses, three of which feature prominent ME/CFS physicians, are on tap for 2012. They include a

  • Clinical Diagnosis and Management course with Dr. Jones, Dr. Klimas and Bateman and others
  • A CFS and Sleep CME with Dr. Natelson, Dr. Bateman, and Dr. Boneva (CDC)
  • A videotaped Medscape course involving Drs. Anthony Komaroff, Cindy Bateman, and Charles Lapp.

Medical School Training – CDC is developing a medical school training program that they plan to offer it to all medical schools. If this program is based on their work with ME/CFS physicians, which makes sense giving they are using them in the CME courses, this will be a large step forward.

CDC Website – Dr. Unger and other CDC officials also met with Eileen Holderman and Dr. Dane Cook from the CFSAC committee regarding the CDC’s CFS website. CDC officials were described as cordial and attentive. CDC reported they are working to implement the changes suggested and that they should be in place by the next CFSAC meeting.


The CDC is also reaching out to outside researchers for the first in several years and is participating in a.

  • Metagenomics Pathogen Study – the CDC is looking for pathogens using a technique called metagenomics which has the potential to pick up novel pathogens. This study with Dr. Eric Dewart of the Blood Safety Research Institute will use plasma samples from 50 acute onset CFS patients. (The CFIDS Association is using their Biobank samples for a similar study with Dewart).
  • Clinical Assessment of CFS Study using ME/CFS Physicians – this study will examine (a) how patients are diagnosed and (b) how they differ at seven ME/CFS practices and will include Dr. Natelson, Dr. Klimas and Drs. Kogelnik, Dr. Peterson, Dr. Bateman, Dr. Lapp and Dr. Podell (Open Medicine Institute) and could ultimately point to a standardized definition for ME/CFS. This is a big change of pace from a CDC that for many years eschewed the knowledge gained by ME/CFS practitioners.
  • Banbury Meeting on Clinical Trials – CDC is sponsoring along with the CFIDS Association of America, Cleveland Medical Clinic and Cold Spring Harbor Laboratory, a four-day Banbury Center meeting on “Decoding Clinical Trials to Improve Treatment of ME/CFS”, September 30-October 3, 2012.
  • Wichita Data Bank Open – The CDC finally opened their data bank from the Wichita study patients but after years of waiting it does come with a catch – researchers are going to have to come up with some money to use it.

The Patient Community

Meeting with Patient Groups – the CDC has also had meetings with no less than nine CFS patient advocacy groups to discuss their concerns. Some groups have described their meetings as lengthy and detailed.


The CDC’s CFS research program under Dr. Unger is much more collaborative and open than the Reeves program was. Dr. Unger is bringing ME/CFS experts to inform the CDC’s understanding of diagnostic issues, has contracted with a outside researcher to look for pathogens, has been a leader in the effort to build a major data center for CFS, is meeting with patient groups and is using ME/CFS physicians to create CME courses for physician education. It’s not clear yet what their research priorities are.

The CDC has improved substantially under Dr. Unger.

NIH2National Institutes of Health (NIH)

High Turnover

Turnover at the NIH has been high with two very pro-active officials leaving. After being designated Principal Deputy Asst. Secretary of Health, Wanda Jones, left and family issues forced Dennis Mangan, the Director of the Trans NIH Working group, to take early retirement. Dennis Mangan was replaced by first one then another NIH official.

Wanda Jones – was the director of the Department of Health and Human Services HHS Office on Women’s Health.  A strong advocate for CFS at upper levels of the NIH, Dr. Jones instituted live video streaming of the CFSAC meetings, re-organized the group and was acknowledged by all to have done an excellent job.

Dennis Mangan– after years of little happening, Dennis was basically a whirlwind of activity. In his short time with ME/CFS he involved patients at several levels, created a listserv, redid the website, got the NIH to refer to CFS as ME/CFS, revitalized the Trans NIH Working Group and created the State of Knowledge Workshop. My first memory of Dennis was his sitting down at the end of a CFSAC meeting, gathering all the patients around and listening intently to what they had to say. His replacement, as yet, hasn’t been so forthcoming; she replied to a request for an interview with a short message that she wasn’t giving any yet.


Interagency Group Formed to Facilitate Collaboration – An interagency group focused on fostering collaboration between researchers of the so-called allied disorders such as CFS, fibromyalgia, TMJ, irritable bowel syndrome, interstitial cystitus, etc. was recently formed. Other than the fact that Dennis Mangan was very high on this group, stating that it contained high-level officials, little is known about it.

For at least a decade the NIH has stated it believes that research efforts into these disorders will inform each other yet has done little to produce opportunities for collaboration. As to whether the NIH is correct – no one knows. Dr. Suzanne Vernon noted that until studies are done directly comparing these groups the question of just how allied they are is an open one.

NIH CFS Study – the NIH is engaged in what is reportedly a large CFS study using physicians such as Dr. Peterson. The parameters of that study are unclear.

Program Announcement (PA) – The NIH new program announcement opened opportunities for using different definitions but PA’s rarely to spur research into ME/CFS. Only funded grant package called RFA’s (Request for Applications) have been able to do that (see below). 

Request for Applications (RFA)- Meetings like last years State of Knowledge Workshop are usually held to prepare for a major grant packages (called an RFA’s). Most of the NIH ‘s current pool CFS researchers came out of the 2006 RFA and with 30% of CFS studies ending this year, another one is long past due. Dennis Mangan said the NIH would decide on an RFA when the Lipkin XMRV study is done which could happen at any time. If the NIH doesn’t issue another RFA funding levels for ME/CFS, as poor as they are, could drop even further.

Research – Even though NIH’s attention to and funding for ME/CFS is paltry relative to other disorders, the NIH continues to fund more ME/CFS studies than any other group.

Conclusion – there are some positive steps at the NIH (interagency group, CASA) but the loss of an effective leader, the many studies that are ending this year, the NIH’s poor record at bringing in new investigators and their unwillingness, thus far, to fund a new grant (RFA) for CFS are not encouraging signs for the future of  ME/CFS program here.


CASA – Several years ago the idea of the CFS groups at the NIH and the CDC collaborating was laughable given the amount of animosity between the two leaders.  Things changed with the changes in leadership and now the two groups are collaborating on the CASA project.  Dennis Mangan, the former NIH rep, however, said Dr. Unger has played a key leadership role in the ambitious CASA project.

Its too early to know what will come of CASA (Collection, Aggregation, Storage and Analysis).  Birthed at the State of the Science Workshop, CASA is designed to lay the groundwork for large multi-center ME/CFS research studies. Because the project will require creating standards for ME/CFS researchers it could be a major driver of the movement towards standardization Dr. Vernon talked about recently. 


CDMRP Fund – The entry of CFS into Department of Defense’s Congressionally Directed Medical Research Program (CDMRP)  represents a rare advocacy victory. The CDMRP pumps about  ten million dollars a year into research for into Gulf War Illness – one of CFS’s so-called allied ‘illnesses’ . The CFIDS Association’s ability  to persuade the  CDMRP to include ME/CFS in  its ‘priority topic’ area meant CFS researchers had a chance at a piece of that 10 million dollar pie this last year.

Bob Miller and Pat Fero were among the patients asked to review the grants and  reported that ME/CFS researchers took advantage of the opportunity and submitted many grants.  We soon see how much that effort paid off.

One Win – We know that the WPI won a $400,000 grant to study GWI but the fate of most other applications is unclear. Disappointingly, despite the success of the Rituximab study, (which may have come too late in the process to be considered), the CAA’s autoimmune marker study was not funded.

CFS researchers will have the opportunity to apply for  the next grant opportunity this February or March.

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