Twittering the IACFS/ME Conference Pt. I

#IACFSME – over the past year 2 NIH CFS heads, Vivian Pinn the head of the Office of Women;s Health, CDC CFS Chief and Wanda Jones have left

#IACFSME – Mangan’s retirement is a big loss to the #ME/CFS community. He showed commitment and initiative we hadn’t seen before…

#IACFSME– name of the site to ME/CFS, engaged the patient community & headed up the CASA project is retiring Oct 31st due to family matters

#IACFSME – Dennis Mangan, who revitalized and enlarged the CFS Working Group at NIH, produced the State of Knowledge Workshop, changed the.

#IACFSME – DeMeirleir POSTER finds 63% of 108 patients receive noticeable improvement using #GcMaF, did best at reducing fatigue

#IACFSME – #CDC researcher Boneva believes heavy bleeding could lead to fibroids, endometriosis and eventually high rates of hysterectomies

#IACFSME – in CDC Boneva study half of #CFS patients had had hysterectomies, early menopause…she believes due to chronic heavy bleeding

#IACFSME– #CDC funded two contracts – one with Medscape – a popular CME choice…this means CDC courses will probably get more traffic…..

#IACFSME – #Jason study found highest levels of fatigue in Latino males. Unger notes that males tend to seek care later = higher fatigue

#IACFSME– CDC chief Unger reports doctors making #CFSdiagnosis are more likely to treat it seriously; need to increase diagnostic know how

#IACFSME – CFS CDC chief Unger reports only 37% of docs have made a CFS diagnosis and only 28% felt they were competent to diagnose it

#IACFSME – #EBV researchers Lerner and Glazer now working together; believe they have documented key aspect of EBV infection in #CFS

#IACFSME – #Broderick gene expression results validate his earlier cytokine research; finds high rate – immune/ metabolic gene abnormalities

#IACFSME – #Broderick‘s next challenge is to directly measure the chemicals his gene expression studies are finding in the body

#IACFSME – #CAA researcher Broderick thinks he may have found 3 biomarkers for CFS – one involves cytokines, one gene expression and ? :(

#IACFSME – #CDC researcher Boneva believes estrogen/progesterone abnormalities could explain increased female prevalence in #CFS

#IACFSME – #CDC researcher finds amazingly increased gynecological abnormalities in #CFS including heavy bleeding, hysterectomies

#IACFSME – Katz #NK study was done on adolescents who hadn’t had #CFS long; they speculate NK cell problems show up later in the illness

@XMRV_GA – I Should use IACFSME – OK (new at this…it took 21 hours to get to me for some reason….:) Will do

#IACFS/ME – RIch #Konynenburg asks about glutathione deficiency, Falkenburg at #CDC says she’s interested and will talk with him at a break

#IACFS/ME – Katz NK study finds increased NK cell functioning in #CFS…big discussion follows, #Klimas warns about using different methods

#IACFS/ME – now Falkenburg from #CDC is talking about NK cells in #CFS – this is the natural killer cell conference

#IACFS/ME – #Klimas is aglow over cytotoxic T cell findings because they are huge players in research – will underscore – pathogen findings

#IACFS/ME – #Klimas calls Brenus findings ‘very important’ because it find reduced cytotoxic T cell functioning – first time ever in #CFS

#IACFS/ME- Nancy #Klimas says she would steal #Brenu – young Australian researcher in a minute if she could……..

#IACFS/ME- #Brenu from Australia gives two talks back to back.. first shows reduced killing ability of cytotoxic NK and T (?) cells in #CFS

#IACFS/ME – #Snell says they are only ones who can measure ‘fatigue’- fatigue is reduced efficiency in ability to do work…

#IACFS/ME – #Snell pushing aerobic capacity testing hard in #CFS. Says its possible for everyone to do this…we have undergrads doing it

#IACFS/ME – #Snell shows 6 min/test PACE #CFS patients at end of trial according to NYork Heart Association figures were severely disabled

#IACFS/ME – #Snell bashes 6 minute walk tests, its main claim to fame is predicting how long a heart patient is going to live, not good test

#IACFS/ME – room is about full now :). Snell is talking, Emphasizes they have a standardized approach…(would that rest of the field did)

CortJohnson Cort Johnson #IACFS/ME – #Exercise physi describes on individual who was at anerobic threshold at 92 heart rate day2 – at rest

##IACFS/ME – New York exercise physiologist validates Pacific Fatigue labs work! Finds same level of vo2 max reduction after exercise – day2

##IACFS/ME – room is about 3/4’s full – good turnout! Now looking at Exercise and ME/CFS

#IACFS/ME – Marly Silverman reports that during her talk with #Unger that she loved the idea of neuroendocrineimmune illness

#IACFS/ME – #Unger says focus on looking at symptoms and test results (illness domains) and use them to break the disorder up into subsets

#IACFS/ME – #Unger proposes that CFS is too heterogeneous to have a single cause. Suggests looking at ‘illness domains’ rather than defin’s

#IACFS/ME -#Jason – lots of symptoms are what doomed Holmes criteria. Jason’s ME criteria had 4 parameters and required acute onset

#IACFS/ME – #Jason suggests using more symptoms (eg ICC) runs the danger of bringing in people with pscyh diagnoses (eg Holmes criteria)

#IACFS/ME – Friedman in introducing Dr. #Unger from #CDCaccuses CDC of creating a rift in CFS community with introduction- Empiric criteria

#IACFS/ME – #Jason study concludes CCC criteria selects for cardinal symptoms of #CFS while #Empiric criteria does not

#IACFS/ME – #Jason study conclusion – Empiric criteria not as effective at differentiating CFS from non CFS cases as the #CCCcriteria

#IACFS/ME – #Jason study finds Empiric criteria identified 75% of people with #CFS and CCC identified 87% of people with CFS

#IACFS/ME – #Jason finds no difference in # of psych diagnoses in ME vs Fukuda Criteria..(Jason did not have #ICC criteria available to use)

#IACFS/ME – #Jason study finds #ME criteria (his own) and #CCCcriteria select for more severely ill patients than #Fukuda criteria

#IACFS/ME Conf begins -8 am (yawn) with room probably 60% full – a good turnout for Case Definitions..Friedman calls it most important topic

#IACFS/ME – #Vitamin D should be taken with fatty snack in CFS – Klimas applauds that idea

#IACFS/ME – #Bateman does supplement patients with Vit D but hoped for more results……Lapp really low Vit D results in swelling and pain

#IACFS/ME – Valling reports high #Vit D deficiency in Australia in #CFS not sure why but may not be getting enough sun….

#IACFS/ME – #Vallings reports that women in menopause in #CFStend to have reduction in symptoms (I think!)

#IACFS/ME – #Lapp reports that ME/CFS patients have m shaped activity curve….low in the AM and pickup in PM it then drops – another pickup

#IACFS/ME – who’s here? Marly Silverman, Bob Miller, Jon Cohen (Science mag)…..

#IACFS/ME – who’s here? James Baraniuk, Hilary Johnson, Staci Stevens, Chris Snell, Eleanor Stein, Alison Bested, Elizabeth Unger……

#IACFS/ME – who’s here right now? Whiting, Lerner, Montoya, Chia. Who’s not? Bell, no one from the CAA yet (McCleary, Vernon)….

#IACFS/ME – who’s here? Annette #Whittemore, Dan Peterson, Scott Carlson, Paul #Cheney, Nancy Klimas, Paul Lapp, Byron Hyde., Komaroff….