trishrhymes
Senior Member
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[My question is: people here are worried that Prof Esther Crawley will bring in BPS views of ME/CFS into the MEGA project (a valid concern). However, it seems that her responsibility is going to be setting up a biobank, which seems to be about as for as you can get from psychology; you would use a biobank to do biomedical research. Does anyone have any views on this?[/QUOTE]
On the surface I see the sense in what you are saying, however Holgate makes it clear that he thinks, presumably on Crawley's advice that we have to use the broadest possible definition of ME.
Since Crawley has form on this, publishing 'epidemiological' studies on children basing her definition of CFS on nothing more than what a child and their parent fill in in a questionnaire about fatigue, I do not trust her as the guide on which patients to include.
Also I don't trust her to define PEM, as she does not seem to understand either what it is, or its central importance in defining ME, so even if the PAG manage to insist on PEM, it may be left to Crawley and her minions to oversea the training of those on the ground selecting patients to take part. If it gets watered down to post exertional fatigue or post exertional stress it could include anyone...
My other major concern about her is that the initial stage is not just collecting biological samples into a biobank, it is also collecting questionnaire data on all the patients. While some of this is necessary in order to record symptom patterns and level of disability so these can be correlated later with biomedical findings to help with subgrouping, I am concerned that a vast database of patient questionnaire data, including comorbid psychological factors, family history etc will be misused by Crawley and her pals as a playground for their psychological ,'research'. She has already done a lot of damage with this approach.
By insisting on starting the project with questionnaire and sample collection as the sole purpose of the grant application, with no guarantee of further funding even being applied for until all that collecting has been completed, we may not see any actual biomedical research at all. At best we will have to wait some years while MEGA gets its act together and collects 12000 patients' data and samples.
On the surface I see the sense in what you are saying, however Holgate makes it clear that he thinks, presumably on Crawley's advice that we have to use the broadest possible definition of ME.
Since Crawley has form on this, publishing 'epidemiological' studies on children basing her definition of CFS on nothing more than what a child and their parent fill in in a questionnaire about fatigue, I do not trust her as the guide on which patients to include.
Also I don't trust her to define PEM, as she does not seem to understand either what it is, or its central importance in defining ME, so even if the PAG manage to insist on PEM, it may be left to Crawley and her minions to oversea the training of those on the ground selecting patients to take part. If it gets watered down to post exertional fatigue or post exertional stress it could include anyone...
My other major concern about her is that the initial stage is not just collecting biological samples into a biobank, it is also collecting questionnaire data on all the patients. While some of this is necessary in order to record symptom patterns and level of disability so these can be correlated later with biomedical findings to help with subgrouping, I am concerned that a vast database of patient questionnaire data, including comorbid psychological factors, family history etc will be misused by Crawley and her pals as a playground for their psychological ,'research'. She has already done a lot of damage with this approach.
By insisting on starting the project with questionnaire and sample collection as the sole purpose of the grant application, with no guarantee of further funding even being applied for until all that collecting has been completed, we may not see any actual biomedical research at all. At best we will have to wait some years while MEGA gets its act together and collects 12000 patients' data and samples.