Research into ME

A Presentation at Norwich Research Park

On the 23rd October 2015 ‘Invest in ME’ organised a presentation on ME research with a variety of speakers including Dr Mady Hornig, Dr Ian Gibson and Fane Mensah.  This took place at the Norwich Research Park and Louise Prior from Elevate attended and has made the comments below as well as providing 3 recordings.

Louise Prior says,

“The warm up was a young man called Fane Mensah. He presented on Rituximab therapy related to b-cells. ‘ME patients have altered b-cell function or phenotype profile, related to b-cell depletion therapy’. [The drug] Rituximab seems to work with ME patients, but why not all patients? Probably related to the fact that there are a whole range of symptoms in people who are diagnosed with ME. Requires much more research!

Then Professor Mady Hornig, from the USA, spoke covering a vast array of items. She began mentioning the genetics & epigenetics, plus the environmental exposures aspect of developing an illness. She went on to the gut-immune-brain axis, pointing out that 98% of serotonin receptors are in the gastro intestinal tract. Normal gut microbiota modulates brain development and behaviour. Gene expression, which genes are turned on or off, and gene variance, can alter the immune response and whether persistent infection or not. So, RNA synthesis studies. She went on to autoantibodies but I need to listen to that again.

Then a large part was on Cytokines in ME. Ones involved in viral, bacteria and parasitic infections. No cytokines, no b-cells in individual.

Ampligene was talked about a few times. It’s not available in the UK. I think she said it’s only just available somewhere in mainland Europe. Circulatory cytokines, allergy related cytokines…

Then the mental fatigue subscale came up and it showed clearly that when there was an increase in a wide range of cytokines it helped short duration subjects. However long duration subjects were not helped. I think the point here was the subjects needed the help promptly, I believe the Professor mentioned the best would be in the first 6 months of diagnosis, but they set it as the first 3 years, because trying to get cooperation for a study wasn’t possible that soon. (Within first 6 months of being diagnosed people aren’t thinking of getting into a study!)

I know the Professor went on to mention diet, and particularly tryptophan, serotonin synthesis, circadian rhythm, sleep regulator…and something about cytokines-tryptophan-serotonin, but I’d have to listen to it again. She also spoke of probiotics, and which brought the serotonin back up again.

ME Research Presentation Norwich – Rec 1 – Fane Mensah

https://drive.google.com/file/d/0BwvnyUW8AJnER0FkZW9vMXo4alk/view?usp=sharing

ME Research Presentation Norwich – Rec 2 – Professor Hornig

https://drive.google.com/file/d/0BwvnyUW8AJnEdWQ4ODJjUjktMGs/view?usp=sharing

ME Research Presentation Norwich – Rec 3 – Q&A and Discussion

https://drive.google.com/file/d/0BwvnyUW8AJnEZzVIckdsNWxKQUU/view?usp=sharing

Louise Prior