On September 10, 2012, an alliance of ME/CFS patient organizations and independent advocates submitted a position paper to the CDC in support of the June 2012 CFSAC recommendation to remove the CFS Toolkit and make the IACFS/ME Primer widely available. Our goal in submitting this joint position paper is to improve patient care by significantly improving the clinical guidance material available to medical providers, insurance companies, health clinics, secondary medical educators and patients.
For years, patients have expressed serious concerns regarding the content of the CDC CFS Toolkit because it fails to convey the seriousness of the disease, offers inadequate diagnostic guidance and it even fails to acknowledge PEM as a hallmark symptom while focusing on CBT and GET for treatment. The Toolkit also states that the same clinical guidance is appropriate for both ME/CFS and “CFS-like illness” (chronic fatigue but without the 4 symptoms), which only blurs the line with other causes of fatigue such as depression. As a result, the CDC CFS Toolkit has mis-educated medical providers and led to inadequate patient care, harmful clinical recommendations and stigmatizing of patients.
By comparison, the IACFS/ME Primer provides much more accurate and complete information about the pathology of ME/CFS and also provides extensive diagnostic and treatment information. As Steve Krafchick, CFSAC member, stated, the IACFS/ME Primer is “a good, basic document that gives a primary care physician a real road map, whether it is to consider a differential diagnosis or different treatment options. There’s nothing like it anywhere else”.
Is it perfect? No. There are opportunities to improve it and the IACFS/ME has undertaken an effort to do just that. But as it is, the content of the Primer is far superior to the content of the Toolkit, providing both immediate benefits to medical providers and patients and also a significantly better baseline from which to make improvements over time.
It is for that reason that the alliance of ME/CFS patient organizations and independent patient advocates have jointly submitted this position paper to the CDC and requested that the CDC seriously consider this patient perspective as they consider their actions on the CFSAC recommendation. We have asked for a response to our recommendations by Oct 22, 2012.
You can access the position paper, toolkit and primer at the following links:
CDC CFS Toolkit: http://www.cdc.gov/cfs/pdf/cfs-toolkit.pdf
IACFS/ME Primer: ME/CFS: A Primer for Clinical Practitioners – IACFSME > Home
The full position paper: http://dl.dropbox.com/u/89158245/Position%20Toolkit%20IACFSME%20Primer%20Sept%2010.pdf
If you have any questions or comments, do not hesitate to contact one of the organizations or individuals who submitted the position paper. These include:
ME/CFS Patient Organizations (update 12 Sept 2012 – Pro-Health has signed on)
ME/CFS Patient Advocates (update 12 Sept 2012 – Rich Carson has signed on)
|Lori Chapo-Kroger, R.N.
|Pat Fero, MEPD
||Mary Schweitzer, Ph.D.
|Joan Grobstein, M.D.
||Jennifer Spotila, J.D.
|Patricia LaRosa, R.N., MSN