• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Phoenix Rising tweeting live now from Invest in ME 2014 Conference 30 May

Sasha

Fine, thank you
Messages
17,863
Location
UK
Here's the agenda:

08.55 Conference Opens Invest in ME Dr Ian Gibson
09.05 Keynote Speech Professor Jonathan Edwards
09.35 Finding Antibodies in Neurological Diseases Professor Angela Vincent
10.10 Infection-induced autoimmunity in ME Professor Jonas Blomberg

10.40 Refreshment Break

11.00 Pathogen Discovery in ME Professor Mady Hornig
11.40 EBV and ME/CFS Professor Carmen Scheibenbogen
12.10 Gut Microbiome and ME/CFS Professor Simon Carding

12.35 Lunch

13.25 Innate and Adaptive Immune Cells in ME Professor Sonya Marshall-Gradisnik
14.05 Brain Imaging and ME Professor James Baraniuk
14.45 ANS and ME Professor Julia Newton

15.15 Refreshment Break

15.35 Markers of Post-Exertional Malaise in ME Professor Maureen Hanson
16.10 Diagnosis/Treatments and ME in USA Dr. Andreas Kogelnik
16.25 Diagnosis/Treatments and ME in UK Dr. Amolak Bansal
16.40 Diagnosis/Treatments and ME in Clinical Practice - Panel Discussion Dr. Andreas Kogelnik / Dr. Amolak Bansal / Dr. Saul Berkowitz /

17.05 External View of ME Research Strategy Dr Julian Blanco
17.20 Plenary Session Dr Ian Gibson

17.30 Adjourn
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Very, very interesting. Mark reports Dr Hornig as saying that "autoimmune disturbances may result from failed uptake of dietary precursors of antioxidants in the terminal ileum".

Anybody know what those precursors are?

She says they're about to start a pilot microbiome study next week - great! (See my signature and help fund the big one).
 

Nielk

Senior Member
Messages
6,970
Julia Newton:

89% of ME patients have orthostatic intolerance. In all cases fatigue, severity associates with severity of increased OI.

Cognitive function decreases when autonomic nervous system is challenged.

Muscle MR spectroscopy -- ME patients -- huge amounts of acid accumulates in muscle during exercise and slowly dissipates.
 

Iquitos

Senior Member
Messages
513
Location
Colorado
Yeah, lactic acid buildup in my muscles was one of the first things I noticed after I got the "killer flu" that I never completely recovered from. I knew what it was from being an avid jogger up to the time I got sick. I was shocked to find that just the circular movements of thumb and forefinger I used to clean hard contacts at that time made my thumb feel like I had been doing it for hours.

Thanks for updates, Nielk.
 

Nielk

Senior Member
Messages
6,970
Dr. Bansal:

@aboutmecfs: Discussing the differences between ME and depression. eg ME patients have adverse reactions to anti-depressants, different sleep issues ...

@aboutmecfs: ME vs CFS. ME patients have more consistent and significant PEM, greater neurocognitive dysfunction,..
 

Nielk

Senior Member
Messages
6,970
Dr. blanco:

@aboutmecfs: We need to attract funding -- public and private. We need social visibility. We need to pressure policy makers.

@aboutmecfs: Research is ok, but what about treatments. Follow the example of rituximab

@aboutmecfs: ME is the best example of patients moving research ahead. The dialogue between science and the rest of society has never been more important