Marco
Grrrrrrr!
- Messages
- 2,386
- Location
- Near Cognac, France
Is this adequate? I don't think so.
http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1068&Itemid=216
Scroll down to Selecting People for further Research Studies.
"SELECTING PEOPLE FOR FURTHER RESEARCH STUDIES
There is an immediate need for international agreement and co-operation on the research criteria being used to select well-characterised ME/CFS patients for further research into XMRV. Otherwise, we could end up in 2010 with a collection of conflicting results on prevalence because different international research groups have been using different patient selection criteria.
In the present situation, with many research groups reluctant or unwilling to use Canadian criteria, and not having stored samples from patients that meet Canadian criteria, the best way forward may be for everyone to agree to use Fukuda defined CFS. We may then be able to draw some conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not.
Besides using stored blood samples, research needs to involve fresh clinical cases, as well as other disease groups (particularly inflammatory conditions with immune activation) and properly matched healthy controls."
Its good to see that the ME Association has mentioned the issue of the diagnostic criteria used but what to make of "many research groups reluctant or unwilling to use the Canadian criteria" - why because the discredited NICE guidelines consider them too strict?; "best way forward is for everyone to use the Fukada defintion"; and do they really believe that "We may then be able to draw some conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not." More likely a low percentage of XMRV found in a 'CFS' cohort will be the first nail in the coffin. And this is even in reference to the MEA's own funded research. Why can't they insist on selecting new subjects using only the Canadian criteria?
I'll be writing as a member of the ME Association seeking clarification and reassurance.
Cheers
Mark
http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1068&Itemid=216
Scroll down to Selecting People for further Research Studies.
"SELECTING PEOPLE FOR FURTHER RESEARCH STUDIES
There is an immediate need for international agreement and co-operation on the research criteria being used to select well-characterised ME/CFS patients for further research into XMRV. Otherwise, we could end up in 2010 with a collection of conflicting results on prevalence because different international research groups have been using different patient selection criteria.
In the present situation, with many research groups reluctant or unwilling to use Canadian criteria, and not having stored samples from patients that meet Canadian criteria, the best way forward may be for everyone to agree to use Fukuda defined CFS. We may then be able to draw some conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not.
Besides using stored blood samples, research needs to involve fresh clinical cases, as well as other disease groups (particularly inflammatory conditions with immune activation) and properly matched healthy controls."
Its good to see that the ME Association has mentioned the issue of the diagnostic criteria used but what to make of "many research groups reluctant or unwilling to use the Canadian criteria" - why because the discredited NICE guidelines consider them too strict?; "best way forward is for everyone to use the Fukada defintion"; and do they really believe that "We may then be able to draw some conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not." More likely a low percentage of XMRV found in a 'CFS' cohort will be the first nail in the coffin. And this is even in reference to the MEA's own funded research. Why can't they insist on selecting new subjects using only the Canadian criteria?
I'll be writing as a member of the ME Association seeking clarification and reassurance.
Cheers
Mark