In the USA there are alarming moves for Health and Human Services (HHS) to ask the Institute of Medicine (IOM) to construct new clinical criteria for ME/CFS. This would impact on patients around the world. It has caused great concern because the IOM’s previous attempt at criteria for Gulf War Syndrome has not been at all helpful. The last thing patients need is yet another set of broad criteria which muddle different illnesses together and result in people being misdiagnosed and offered the wrong types of treatment.
Thirty of the USA’s foremost experts on ME, and others from around the world, have signed an open letter, available here, expressing their total support for the Canadian Consensus Criteria – “we have reached a consensus on adopting the 2003 Canadian Consensus Criteria (CCC) as the case definition for this disease.” They point out that “the CCC is a more scientifically accurate description of the disease” than the Fukuda criteria and it “incorporates the extensive scientific knowledge gained from decades of research.” They explain that failure to adopt these criteria “will significantly impede research and harm patient care.” whereas adopting the Canadian criteria “will facilitate our efforts to define the biomarkers, which will be used to further refine the case definition in the future.” …”we strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS.”
The full letter and list of signatories is available at – https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20Sept%2023%202013.pdf
There is also a more detailed letter from Dr Lily Chu available at – https://dl.dropboxusercontent.com/u/89158245/Dr.%20Lily%20Chu%20letter%20to%20Secr%20Sebelius%20Sept%2027.pdf