2014 IACFS/ME Conference -- Jarred Younger on fibro

"I believe there is significant overlap between FM and CFS"

 

future research and treatment

 

BAD NEWS: 25% improve over time, 39% get worse

 

GOOD NEWS: increased scientific interest -- there were 600 papers on fibro last year

 

Central nervous system? or muscles? brain? spinal cord?

Central Sensitivity Syndrome = brain and spinal cord

 

pain is our alarm system, and fibro is a broken alarm

 

the flu produces a sickness response -- your immune system does that to you on purpose

microglia protect us from everything -- they change shape, pro-inflammatory chemicals make neurons make you feel bad -- they function to make you rest so your body can divert all resources to fight infections

 

what if the microglia dysregulate? get stuck "on"

 

similarity between fibromyalgia and sickness response hints that they're related

 

primed, hair trigger, easy to activate, reaction to something that's not supposed to

 

we can't directly test this, can't get into the brain

 

CSS? undiagnosed other? SFPN? CSF leak? Vitamin D deficiency?

 

N.B. -- once you get a CFS/fibro diagnosis, all other testing stops

 

SFPN -- starts more distant from the heart, and treatment differs from fibro

 

pain worse, leptin rises -- chicken/egg

 

brain imaging -- some regions of brain are changing -- pain and emotion areas are shrinking -- this may be an adaptation rather than the cause

 

PET -- tracer is soaked up by activated microglia -- this has been tested in MS

 

brain temperature

 

TREATMENTS:

low dose naltrexone -- prevents microglia from reacting as strongly -- 50%+ improve

fluorocitrate

minocycline

ibudilast (AV 411)

dextromethorphan

3-hydroxymorphinan

 

some herbs suppress microglia, but this has not been tested in fibromyalgia