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Good article from a Jørgen Jelstad

user9876

Senior Member
Messages
4,556
This is a good article talking about the need to have an accurate diagnosis for research.I think many of these discussions have been had on other threads but this article pulls things together nicely.

http://translate.google.com/transla...2/10/21/diagnoseforvirringen/&act=url&act=url

Original (http://debortgjemte.com/2012/10/21/diagnoseforvirringen/)

There is also a good discussion of the ME/CFS naming issues in one comment. Jorgen basically expresses the view that the name will change as causal mechanisms are found.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi user9876, the fact is the name WILL change as science advances, and we wont be doing it, the scientists will be. This has happened with all other diseases. I have been saying this for years. So the name is less relevant now than the diagnostic criteria used in studies - its advancing the science faster that is the reason to choose ME definitions. Bye, Alex

PS Since 1970 ME has been attributed to hysteria, and hence psychosomatic, by some psychiatrists - it was claimed that the Royal Free epidemic was mass hysteria. Removing the label CFS will not help with this unless strict ME diagnostic criteria can be mandated. To really get things moving we need an obvious, mechanistically understood, and highly validated biomarker.
 

user9876

Senior Member
Messages
4,556
Hi user9876, the fact is the name WILL change as science advances, and we wont be doing it, the scientists will be. This has happened with all other diseases. I have been saying this for years. So the name is less relevant now than the diagnostic criteria used in studies - its advancing the science faster that is the reason to choose ME definitions. Bye, Alex

PS Since 1970 ME has been attributed to hysteria, and hence psychosomatic, by some psychiatrists - it was claimed that the Royal Free epidemic was mass hysteria. Removing the label CFS will not help with this unless strict ME diagnostic criteria can be mandated. To really get things moving we need an obvious, mechanistically understood, and highly validated biomarker.

From a research perspective I quite like the approach of having a very restrictive set of patients say those with particular immune system issues. I don't think that would necessarily cover all ME patients but it may identify a consistant group to study. This may help enhance understanding and then move onto other clearly defineable groups
 

Enid

Senior Member
Messages
3,309
Location
UK
Thanks user9876 - that is good to see - friends in Norway and though they found Rituximab focussing attention on immune dysfunction, they continue to advance ME.