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

[Sasha]

Link here:

https://twitter.com/aboutmecfs

 

[Sasha]

Prof Jonathon Edwards giving opening keynote speech now - his comments are fascinating! Get on over there, folks!

This is @Mark tweeting, I think. Great stuff, Mark!

 

[Sasha]

Oops, it's Prof Angela Vincent up now - fascinating, fascinating! I'm glad I ordered the DVDs of this. You get a cheaper deal if you order in May:

http://www.investinme.eu/DVD-earlybird.html

 

[Sasha]

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]

Prof Mady Hornig now.

 

[Sasha]

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).

 

[Sasha]

Fascinating stuff from Dr Scheibenbogen on EBV and ME.

Is anyone else following this or is it just me? It's really great stuff!

 

[Kate_UK]

I'm watching too.

Mark reports Dr Hornig as saying that "autoimmune disturbances may result from failed uptake of dietary precursors of antioxidants in the terminal ileum".

So this is a gut thing they are talking about?

 

[aimossy]

I have been watching thanks @Sasha for the link and @Mark for tweeting!

 

[Nielk]

So far, a lot about possible autoimmunity connection and the gut.

 

[Sasha]

So far, a lot about possible autoimmunity connection and the gut.

Yes - interesting comment just now from Prof Carding that leaky gut can be detected by confocal laser endomicroscopy. I wasn't aware that there was a recognised test - I wonder if this is accepted as a diagnostic test anywhere? In the NHS for example?

 

[Nielk]

Many ME patients have GI disturbance. ME patients have been shown to have altered faecal microbiota.

Research into the microbiota may lead to evidence-based therapeutic interventions for ME patients.

 

[Nielk]

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]

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]

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]

@aboutmecfs: ME patients exhibit altered pupil reflexes (in at least 67% of patients).

@aboutmecfs: Conditions that can mimic ME -- EDS, hypothyroidism, Sjogren's, sleep disorders, cardiac dysfunction ...

 

[lansbergen]

@aboutmecfs: ME patients exhibit altered pupil reflexes (in at least 67% of patients).

Ha, they noticed.

 

[Nielk]

I didn't know that.

 

[Nielk]

@aboutmecfs: MTHFR -- have got funding to study the role of MTHFR in ME. Not causative in most cases, cofactor? Mutations are disproportional in ME.

 

[Nielk]

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