Chronic fatigue syndrome organisations have been calling for a major shake up of the Centers for Disease Control and Prevention's research program and now it seems on the back of the recent XMRV retrovirus breakthrough by a non-governmental research group the Center's own staff are questioning the current approach.
In recent years many chronic fatigue syndrome (ME/CFS) groups along with individual doctors and patients have become increasingly frustrated with the lack of progress made by the CDC in advancing understanding and treatment of ME/CFS despite relatively large amounts of funding compared to other programs.
In October 2008 the Chronic Fatigue Syndrome Advisory Committee (CFSAC) of the U.S. Department of Health & Human Services (DHHS), whose mission is "Improving the health, safety, and well-being of America", held a meeting attended by committee members including respected ME/CFS physicians Lucinda Bateman, MD, and Nancy Klimas, MD, CDC representatives and representatives from other governmental organisations including the National Institutes of Health (NIH) and the Food and Drug Administration (FDA).
Both Dr. Bateman and Dr. Klimas are very well respected within the ME/CFS patient and physician communities and did not hold back in articulating their frustrations with the CDC's program for the condition. During a discussion about the aetiology of ME/CFS the doctors had the following to say:
"How long has the CDC research program been in existence? In 20 years, almost nothing that the CDC has done has reduced morbidity. I don't see CDC as a source for help for me as a clinician to reduce morbidity. CDC hasn't accomplished this objective," commented Dr. Bateman.
Dr. Klimas added that "...the science is there to provide options way beyond the CDC's recommended behavioral treatment and exercise."
This is a particularly pertinent subject for ME/CFS patients as not just the CDC but government health agencies in other countries such as the National Institute of Clincical Excellence (NICE) in the UK have for years only recommended cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as treatments. This approach suggests total ignorance of the scientific evidence that clearly shows the etiology of ME/CFS is organic and has nothing to do with psychological functioning or muscle deconditioning as the CBT-GET approach suggests.
A recent review of the evidence for using CBT and GET in ME/CFS published in the journal Neuroendocrinology Letters was damning; finding that not only was there no evidence of its effectiveness but that in many cases it actually makes patients' conditions worse.
During the discussion Dr. Klimas also said that the CDC has made it known that the agency has no intention of looking for infectious agents, adding that other research organizations are pursuing identification of pathogens and that CDC should be embarrassed not to be looking for them as well.
These remarks seem particularly prophetic a year on after the announcement last month that a small independent research organisation, the Whittemore-Peterson Institute (WPI), had discovered that a large proportion of ME/CFS patients carry the XMRV retrovirus. This has been seen as a major breakthrough in the ME/CFS community yet the CDC had no involvement whatsoever.
At the meeting Kim McCleary, President and CEO of The CFIDS Association of America, presented information demonstrating how funds allocated to ME/CFS research had been squandered by the CDC which had produced no results for ME/CFS patients despite being given substantial taxpayer dollars.
Following this meeting in May of this year the CFSAC published their recommendations:
Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.
Provide adequate funding to CDC to effectively carry out a detailed 5-year plan. This should include, but not be limited to, immediate progress in these priority areas:
- Identification of biomarkers and etiology of CFS;
- Creation of guidelines for adult and pediatric CFS management in full partnership with organizations representing CFS scientific and clinical expertise;
- Provision of web-based guidelines for CFS management given our current state of knowledge and expert opinion, again in full partnership with organizations representing CFS clinical and scientific expertise; and
- Provision of comprehensive information about CFS in partnership with CFS experts to the scientific community, medical and mental health providers, educational institutions and the public for both adult and pediatric CFS through DHHS resources.
Establish Regional Centers funded by DHHS for clinical care, research, and education on CFS. These centers will provide care to this critically underserved population, educate providers, outreach to the community, and provide effective basic science, translational, and clinical research on CFS.
The International Association for CFS/ME (IACFS/ME), one of the leading groups of doctors, researchers and patients, is in agreement with these recommendations stating in July that after two decades without results it is highly critical of the CDCs ME/CFS program and urged that it be relocated to the National Center for Chronic Disease Prevention and Health Promotion which "contains the necessary expertise and leadership critical to establishing interventions to detect, control and prevent CFS."
It seems the CDCs own staff are now beginning to openly question the direction of the research program at the organisation. Comments on the CDC Chatter website, a forum for CDC employees, were removed as the moderator considered too many of them to be "personal attacks" - presumably directed towards the current program leaders.
Despite the pressure from these groups and others nothing seems to have changed at the CDC who still show no indication of implementing the recommendations of the CFSAC.
Fred Friedberg, PhD, President of the IACFS/ME, expressed his frustrations at this years CFSAC meeting held last week.
Friedberg said: "Despite this unprecedented consensus, the CDC has shown no indication of changing its CFS program leadership. This is surprising given its track record to date. After 25 years (and over $100 million) of CDC research, chronic fatigue syndrome remains a stigmatized illness without substantive progress on public health policy or objective diagnosis and treatment. And their new 5 year $25 million plan fails to inspire any confidence that change will occur."
In a statement on the IACFS/MEs website he added that "The most urgent and important issue right now is changing the leadership and direction of the CFS program at CDC, as $25 million in research funding is at stake. If this meeting does not change the status quo then further advocacy actions will be necessary."
As a chronic fatigue syndrome patient It is certainly hard to argue with these sentiments.