As I see it the trouble with using a very general definition is that we might be including lots of people with diverse diseases under one umbrella and that will undoubtedly impede research. Conversely, a very narrow definition might excluse lots of ill people.
If instead we think of MECFS-Lyme as a phenomenon rather than a single entity, wouldn't it make sense to characterise that phenomenon in terms of its symptoms, signs and measureable abnormalities?
To give a very simple example, let's say that numbers ranging from 0-4 characterise the severity of a symptom or measured defect and that the:
1st number represents PEM
2nd fatigue
3rd sleep problems
4th raised TNF
Then a person with no PEM, lots of fatigue and sleep problems, but no mesured TNF abnormality might be represented by the number 0340.
Even if there is a common underlying cause (such as a well defined immune dysfunction), this would allow us to study the different manifestations of that cause. It would also allow researchers to focus on smaller groups or if not, to at least state the frequency of the different groups in their study sample. Suitable names could be given to the different categories as the underlying causes are discovered (assuming of course, that there is any correlation whatsoever between symptoms+signs+measurements, but that is another topic).
I just think a single name and definition is one of the big problems in moving forward with research and a binary definition seems a little bit old fashioned...
If instead we think of MECFS-Lyme as a phenomenon rather than a single entity, wouldn't it make sense to characterise that phenomenon in terms of its symptoms, signs and measureable abnormalities?
To give a very simple example, let's say that numbers ranging from 0-4 characterise the severity of a symptom or measured defect and that the:
1st number represents PEM
2nd fatigue
3rd sleep problems
4th raised TNF
Then a person with no PEM, lots of fatigue and sleep problems, but no mesured TNF abnormality might be represented by the number 0340.
Even if there is a common underlying cause (such as a well defined immune dysfunction), this would allow us to study the different manifestations of that cause. It would also allow researchers to focus on smaller groups or if not, to at least state the frequency of the different groups in their study sample. Suitable names could be given to the different categories as the underlying causes are discovered (assuming of course, that there is any correlation whatsoever between symptoms+signs+measurements, but that is another topic).
I just think a single name and definition is one of the big problems in moving forward with research and a binary definition seems a little bit old fashioned...
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