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Re Can anyone help with my hunt for an expert's comment on the impossibility of truly knowing how many Severe ME/CFS patients there are?
I vividly recall listening to Professor Leonard Jason in a talk (or film) I listened to, that it was really impossible to know the true number of severe patients who were house and bedridden because you couldn't go round every house (he was referring to the US but the point applies to any country as I don't believe any country has collected such data) and ask if they had a sick ME/CFS patient lying inside who could not leave their bed/house.
Does this ring any bells with anyone and if so I'd love the source and to be able to quote what exactly was said rather than the gist.
It's such an important point that numbers of the severe subset are basically an unknown and any quotable expert that speaks to the fact numbers are likely far higher than the usually mooted 25% (I know some say between 25-34%) would be gratefully received.
TIA
I vividly recall listening to Professor Leonard Jason in a talk (or film) I listened to, that it was really impossible to know the true number of severe patients who were house and bedridden because you couldn't go round every house (he was referring to the US but the point applies to any country as I don't believe any country has collected such data) and ask if they had a sick ME/CFS patient lying inside who could not leave their bed/house.
Does this ring any bells with anyone and if so I'd love the source and to be able to quote what exactly was said rather than the gist.
It's such an important point that numbers of the severe subset are basically an unknown and any quotable expert that speaks to the fact numbers are likely far higher than the usually mooted 25% (I know some say between 25-34%) would be gratefully received.
TIA
