UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020

Andy said:


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AFAIK the Polish team use Fukuda, but the Biobank uses CCC. Might explain the differences(?)

eta:
"Karl Morten Phd compares our two metabolomics cohorts (one from @LSHTM Biobank (Canadian Consensus criteria) funded by @MEAssociation & other from collaborators in Poland (Fukuda 1994). So far finding different results."
 
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Adrian said:
I certainly got the impression that they don't see patients as people who understand research. Although I did start a question by pointing out to them that it took a patient to tear holes in their analysis and they resisted doing anything about that for many years.

I also got the impression that if a patient also was a medical person that may be ok. After there talk I was talking to Richard along with Nina (who is a doctor and had given her education talk earlier) so Richard gravitated to asking her if she would be involved.
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Groan
 
I hope those people from BACME are listening hard to all this biomedical stuff and realising they have been pushing rubbish for years about a disease they don't begin to understand. No more false illness beliefs please!
 
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