It might help you understand the controversy about CFS if you realise that ME was a properly defined disease that was originally described in epidemics but then was seen as occurring sporadically as well. There was an ignorant grab by psychologists but many researchers were showing how wrong that was. It was an exciting time with a lot of interest in research and money was available. Then suddenly there was AIDS and all the money disappeared. We had a patient organisation, local groups and a common set of symptoms; we all knew what we were talking about.
Then, suddenly there was an epidemic in the US, the CDC renamed the disease CFS and, in the UK, a group of psychiatrists I had never heard of redefined the illness as CFS but not the CDC version!!!
It was like a military coup.
CFS did not describe the illness at Tahoe and it did not describe ME, it was invented for political reasons. It is not like rheumatoid arthritis or Lupus, something that was developed by examining patients and finding commonality.
I still feel anger that the American researchers let it happen and ignored the years of work done in the UK. ME was epidemic and associated with polio for goodness sake, not fatigue at all. It has taken about twenty five years for the fact that exercise intolerance is the main feature to be acknowledged in the US but we knew that in 1959.
Many people who have been told they have CFS actually have ME, but that is more luck than judgement in most cases. You may equally have Behcets disease, coeliac disease, lupus, fibromyalgia, even one poor woman who had mad cow disease. You could be suffering a post viral syndrome or just be working too hard, overtraining as an athlete, the list goes on.
CFS is NOT a disease, it is a dustbin diagnosis for when doctors don't want to do proper testing to find out what is wrong.
That does not mean that someone who has been told they have CFS is not ill. Simply being tired all the time, the least you can have and be diagnosed, is horrible. The BPS brigade have thrived on the misleading construct CFS. It lets them confuse the issue and they want to dump all diseases of unknown origin into a single category of MUPS.
If you have been diagnosed with CFS, I and I think most of us, feel you have been let down by the medical system and it would be good if you did not have ME since, as defined by Ramsay "it has an alarming propensity to become chronic". Much better if you have something that will resolve and we will not hold that against you. We have had some good advocates who were initially misdiagnosed.
But I can recognise my illness in the description of 1959 whereas I have never experienced 6 months of fatigue so never met any of the definitions of CFS therefore I have ME.
