Wednesday, March 26, 2014

March 2014, 11th Biennial IACFS/ME Conference -- Montoya

Montoya opened the conference with a brief welcome.  He is an infectious disease specialist.
 
His hope is to find a cure.  Stanford's mission statement is to become a Center of Excellence and "solve this mystery disease".
 
In the US alone, CFS costs $7B a year in medical expenses, $20B a year of lost productivity
 
He notes that cytokines are of interest:
50 cytokines increase with the severity of the CFS, but the one that helps inflammation is the only one that decreases -- "a perfect storm"
 
Montoya came back later in the day for a full presentation.  (N.B., the patient conference, which I attended, had 15-20 minute presentations on the same subjects that the professional conference at the other end of the hall had hour-long presentations on.  So, if you want more information on any of these topics, check Phoenix Rising's coverage of those in-depth presentations.)
 
AVOID AT ALL COSTS PUSH/CRASH SYNDROME -- this got a chuckle from many patients who knew we were push/crashing just to attend the conference.  "Biological destruction results from crashes."
 
"An infectious trigger and perpetuator is likely"
 
After verifying the patient really does have ME/CFS instead of a lookalike, he would try an anti-viral, but for now he's reserving IV antiviral until all else fails.  Valganciclovir -- start with the lowest dose and increase as tolerated.  Dramatic worsening with higher dosage.  Improved response with longer treatment (at least 4 months, up to a year).  The trial in the 1980s was only 5 weeks and therefore did not work.
 
Herpes types:
Herpes Simplex 1 and 2
HHV 3 -- Varicella/shingles
HHV 4 -- Epstein Barr
HHV 5 -- Cytomegalovirus
HHV 6 -- almost 100% of people have HHV6
HHV 7 -- rare
HHV 8 -- Kaposi's sarcoma, rare
 
Foscarnet decreases delta waves
 
 

No comments: