Same here: at first this sounded (to me) a lot like the solicitation for experts for the ebMW, but then it can't be because they said at CFSAC that exercise wouldn't be addressing case definitions, except that possibly indirectly that issue might come up as part of the review.
So this seems like a separate and new exercise - and I've heard no word about it until today; they seem to have announced it with 3 days notice of the deadline. So I can only muse and speculate on what it might mean...
Both exercises seem to have one thing in common: vagueness and tight control concerning who they are going to appoint as 'experts'. This one is particularly troubling because they say they're going to develop a new 'consensus definition', presumably under contract to the National Academies (Institute of Medicine) since they're not giving anyone else sufficient time to apply.
However, this may not be as bad as we might fear: the only way I can explain this idea of a 'consensus' definition would be if they are soliciting here for a person with expertise in consensus development - in other words, they are asking for somebody to carry out the consultation process (under contract), and that consultation process will then consult experts on ME/CFS case definition.
Still, we already have a couple of very good consensus definitions (CCC and ICC) so the fact they are planning a new one suggests that they are starting over and developing their own. Whether the new consensus exercise will include the ICC authors or not would seem to be the key here, but it seems likely that it will [also, or only] include other contributors with a rather different view of 'CFS', otherwise what would be the point of a fresh consensus exercise?
My best guess at this stage is that many of the current efforts are going to take an approach that consults both ME and ME/CFS experts and also CBT/GET and 'false illness belief' proponents (which seems logical since those people also claim to be 'CFS/ME experts') with the idea being that neutral parties in the various disputes can engineer some compromise or consensus among those parties. After all, is it realistic to expect authorities in the role of neutral brokers to take sides and exclude the CBT/GET proponents from the process?
This is clearly a worrying prospect because anything that treats stuff like the PACE trial approach as if it were science conducted by scientists is going to end up with some pretty confused and skewed conclusions. At least until those researchers finish investigating the 'mediating factors' in their treatments and end up proving that the only true mediating factor is the researchers' ability to convince patients to answer questionnaires in accordance with the researchers' own false illness beliefs, it will be garbage in garbage out to include their viewpoint.
But I'm also afraid that some of the best ME/CFS researchers will opt out of the process because they refuse to work with something that acknowledges those CBT/GET proponents as if their work was science. Understandable though it is, it seems to me that such a purist position runs an extremely high risk: that in the development of consensus - and perhaps therefore the development of the policy agenda for the next decade or two - the exercise will be skewed towards the CBT/GET lobby by the self-exclusion from the process of some of the best researchers and advocates. We may already be seeing that pattern in the UK with respect to the membership of the new Research Collaborative.
So although I'd like to see the bad 'science' and circular reasoning of the 'false illness belief' proponents struck from the scientific record, I doubt that's a realistic prospect at the moment (though I do think there's some possibility they may eventually end up explicitly closing their own circle and vanishing in a puff of logic), so the best I can hope for is that these new exercises will be fully inclusive, and somehow produce at least something worthwhile.
So this seems like a separate and new exercise - and I've heard no word about it until today; they seem to have announced it with 3 days notice of the deadline. So I can only muse and speculate on what it might mean...
Both exercises seem to have one thing in common: vagueness and tight control concerning who they are going to appoint as 'experts'. This one is particularly troubling because they say they're going to develop a new 'consensus definition', presumably under contract to the National Academies (Institute of Medicine) since they're not giving anyone else sufficient time to apply.
However, this may not be as bad as we might fear: the only way I can explain this idea of a 'consensus' definition would be if they are soliciting here for a person with expertise in consensus development - in other words, they are asking for somebody to carry out the consultation process (under contract), and that consultation process will then consult experts on ME/CFS case definition.
Still, we already have a couple of very good consensus definitions (CCC and ICC) so the fact they are planning a new one suggests that they are starting over and developing their own. Whether the new consensus exercise will include the ICC authors or not would seem to be the key here, but it seems likely that it will [also, or only] include other contributors with a rather different view of 'CFS', otherwise what would be the point of a fresh consensus exercise?
My best guess at this stage is that many of the current efforts are going to take an approach that consults both ME and ME/CFS experts and also CBT/GET and 'false illness belief' proponents (which seems logical since those people also claim to be 'CFS/ME experts') with the idea being that neutral parties in the various disputes can engineer some compromise or consensus among those parties. After all, is it realistic to expect authorities in the role of neutral brokers to take sides and exclude the CBT/GET proponents from the process?
This is clearly a worrying prospect because anything that treats stuff like the PACE trial approach as if it were science conducted by scientists is going to end up with some pretty confused and skewed conclusions. At least until those researchers finish investigating the 'mediating factors' in their treatments and end up proving that the only true mediating factor is the researchers' ability to convince patients to answer questionnaires in accordance with the researchers' own false illness beliefs, it will be garbage in garbage out to include their viewpoint.
But I'm also afraid that some of the best ME/CFS researchers will opt out of the process because they refuse to work with something that acknowledges those CBT/GET proponents as if their work was science. Understandable though it is, it seems to me that such a purist position runs an extremely high risk: that in the development of consensus - and perhaps therefore the development of the policy agenda for the next decade or two - the exercise will be skewed towards the CBT/GET lobby by the self-exclusion from the process of some of the best researchers and advocates. We may already be seeing that pattern in the UK with respect to the membership of the new Research Collaborative.
So although I'd like to see the bad 'science' and circular reasoning of the 'false illness belief' proponents struck from the scientific record, I doubt that's a realistic prospect at the moment (though I do think there's some possibility they may eventually end up explicitly closing their own circle and vanishing in a puff of logic), so the best I can hope for is that these new exercises will be fully inclusive, and somehow produce at least something worthwhile.
