Wednesday, March 26, 2014

2014 IACFS/ME Conference -- Komaroff

There is biological evidence of CFS -- don't let anyone tell you it's psychological
 
We have evidence of:
Neuroendocrine dysfunction -- impairs multiple axes, including cortisol, prolactin, growth hormone, and serotonin
Cognition -- speed, memory, and attention
Autonomic dysfunction
MRI abnormalities
SPECT abnormalities
EEG abnormalities -- sharp/spike waves, even more so than with seizure disorders; distinct spectral coherence pattern
 
over half of the brain shows delta waves (sleep) even when the patient is awake, which means lower alpha waves -- need to wake up the brain -- conversely, there is intrusion of alpha (awake) waves when asleep.  Not enough deep delta wave sleep, which may be why there are delta waves during waking hours, brain fog
 
Leptin was the most distinctive difference -- it's made by fat cells, depresses appetite -- now found in all sorts of bioprocesses
 
Alan Light found relationship of gene expression after exercise to severity
 
autoantibodies -- increased B cells, ANA (autoimmune response), anti-cardiolipin, etc.
 
genes involved in inflammation
 
They've found an immune system activation in or near the brain and the nerves that lead to it
 
Various viruses: EBV, post-Q fever, Ross River virus, Lyme, Parvovirus, Enterovirus, HHV6 (Lipkin ruled out Borna virus and XMRV)
 
HHV6, like Epstein Barr, is ubiquitous, 95% of the population has it
 
There is now solid evidence that CFS can follow a new infection, cases are triggered by infection.  11% of EBV, Q fever and Ross River virus patients in rural Australia resulted in CFS.
 
Dysregulated immune response -- genetic -- rather than a single virus
 
still no approved treatment, but some small recent RCTs show promise: tricyclics, dual reuptake, gabapentin, Lyrica, etc.
 
Rituximab -- 67% versus 13% with placebo -- no adverse effects -- 25 weeks response -- small trial, only 15 patients
 
Montoya uses valganciclovir -- most but not all measurements improved
 
several different illnesses, or at least subgroups
 
No proven treatments -- can only be treated when its biology is understood
 
There is ROBUST EVIDENCE of biological processes: brain, autonomic nervous system, immune system, energy metabolism, oxidative and nitrosative stress
 
Q&A -- the manufacturer's Provigil for narcolepsy trial used the usual dose, not low dose -- 70% of the patients refused to complete the study because of the side effects
 
NK cell is not diagnostic -- not in 100% of patients -- very expensive
 
there are autoantibodies in many patients but not all -- can't say if it's autoimmune
 
antivirals -- he would not use them until trialled -- simpler herpes drugs like Valtrex have helped, but no justification for advocating them
 
more cortical/subcortical and fewer basal ganglia in Komaroff's studies, but others found the reverse -- in the same patient, location of the problem can move around in the brain

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