Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Hunt for expert statement about impossibility of knowing how many patients are Severe patients

Discussion in 'General ME/CFS Discussion' started by Luelma, Jul 28, 2017.

  1. Luelma

    Luelma

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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
     
  2. MEMum

    MEMum Senior Member

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    Jason has replied to email info requests, so you could ask him direct.
     
    mango and Binkie4 like this.
  3. JaimeS

    JaimeS Senior Member

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    Silicon Valley, CA
    Often people stick to the 1/4 housebound or bedbound stat.
     

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