Bob
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I would highly recommend the following article which Firestorm pointed out in a previous post.
While it's not about me/cfs, the parallels and similarities to our situation are quite startling.
http://www.sciencebasedmedicine.org/index.php/a-pandas-story/#more-23161
medicine is a complex business. It is especially difficult to identify new diseases and clinical entities. The creation of a new diagnosis must be done very carefully, with thoughtful scientific studies used in an open-minded way to explore all the complexities involved. Only when all the ducks are in a row can we confidently conclude that a new diagnosis is, in fact, a distinct entity, and not just a variant or misidentification of existing known diseases. Meanwhile, even before all the diagnostic questions can be answered, we need research to answer the basic question of how patients respond to specific treatments – what clinical features predict what kind of respond to which treatments? This is, as I alluded to above, not necessarily the same question as one of diagnosis.
Now that is a long and arduous process.
Yes, but my personal belief is that there is enough information about ME available to at least give it a name and to treat it as a well defined syndrome, if not a discrete disease. I think that, if the will was there, there would be action. There is enough detailed information to make a clinical judgement that a well defined cluster of symptoms can lead to a diagnosis of ME. This is how the ICC has come about. It was from detailed and careful observation of many patients over a long period of time. And I think it's the approach that the CDC is now taking with regards to the new diagnostic criteria which they seem to be creating. This is not a new or novel illness. It's been around for decades. If no one can do better, in terms of defining a disease, then close and careful observation is the way to do it. That's how medicine has traditionally been done. There might be mistakes, but that doesn't matter. You use the best available information that you have, and as knowledge grows, the information can be updated.
So it's not that there isn't the information available, there's just a complete lack of will to do anything. This is mainly, I believe, because the psychiatric lobby has muddied the waters and successfully confused the medical field for decades.
The worst thing to do for a disease is to muddle the diagnosis with another disease. That leads to confusion and neglect.
But that's exactly what the psychiatric lobby has done. They've conflated maladaptive cognition and illness-beliefs, with a biomedical illness. So this has meant that progress has been completely halted for many years.