Wednesday, March 26, 2014

2014 IACFS/ME Conference -- Jason

7.4% thought CBT helped, 26% felt worse
GET made more people worse than ANY other treatment
"Staying within the energy envelope" rather than pushing the envelope
symptoms worsen when body and brain are pressured to function beyond their current capability
the battery charges only to 20%, so don't try to function at 100%
benefit from social support and personal assistance -- even just one hour of help per week -- quality of life is improved, symptoms decrease -- this was patient-driven intervention: some needed conversation, some needed shopping/chores -- "This is what patients need/want, why is it not available everywhere?"
changes in physical function with CBT/relaxation/non-pharma intervention were modest -- few experienced remission -- Jason's 2008 study -- lowered T&B cells, increased NK cells -- the most severe did not improve -- the people who were healthiest got improvement
Q&A --
Lyndonville kids who PERCEIVED themselves as "pretty good" were still "incredibly symptomatic" -- compared to as sick as they were, they were better, but not normal

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