One of the original Incline Village patients recently observed to me "The principal meaning left in CFS is that all the "CFS definitions" which are not consistent with the people who originally received the term in the 1988 Holmes study group represent deliberate distortions. Deliberate distortions are indicative of a disingenuous agenda. When you select a group of people to be prototypes and base a syndrome upon them, you cannot subsequently ignore them and turn the illness into something else. At least, not without making a particularly strong statement about your intentions and methodology."
A patient who has researched/written a book about living with CFS comments that when CDC denies that CFS is actually ME, it's a new disease, "And when you think about it - in a way they are right. They HAVE created a "new" disease - chronic fatigue syndrome IS a new disease. (So new it doesn't exist ...) They have created an invisible, imaginary disease. The problem is that they have taken patients who have REAL diseases and insisted we have their imaginary disease. Think about that for a bit."
Yes, let's think about it. In the 1980s, a definition and diagnostic criteria were written based specifically on the disease that ravaged Incline Village. Over the next 20 years, they were re-written and re-re-written until they bear almost no resemblance to the original.
So, what do those of us diagnosed under the original criteria really have? We have symptoms that don't appear in the current diagnostic criteria, so I guess we don't have CFS any more. But no one has created a different name for what we do have, and through the actions of CDC, it's almost impossible to get an ME diagnosis in the US, even if you fit the criteria.