Mady Hornig interview from ME conference in Oslo - November 2017

@Kalliope already posted this interview in the "News from Norway" thread.

Mady Hornig provides some interesting insight into subtypes, how the gut is involved in immune function, hypothetical treatments, and disease progression. I hope by giving this interview its own thread, it may garner more discussion. Lot's of good bits to chew on in this one.

https://www.youtube.com/watch?v=KenUzLG24Z8

 

Good idea @Diwi9 to make a thread for this video. I watched a lecture of prof. Hornig some time ago, and understood perhaps 5%, but this interview was really comprehensive. Hope others will enjoy it as well.

 

I really appreciate how she is able to unify concepts about the disease...dare I say, it gives me hope. Thank you for posting it today!

Of note, she also discusses a bit about Rituximab's niche in ME/CFS treatment.

 

@Diwi9, thanks for posting that.

she is such a clear and expressive communicator. I enjoyed hearing her speculations and descriptions of her areas of interest. she’s obviously still very interested in the microbiome.

One thing she said that I had not heard before is that she thought that the onset of ME/CFS occurred at two age ranges, 11 to 13 and around 30.

another area that I had not heard her speculate on before was the association of small fiber neuropathy in ME/CFS and its possible association with the gut. I think I got that right, but somebody should check me on that. just speculation, but coming from her it’s interesting speculation.

 

@voner , this matches my experience. I first became ill at age 12. I missed several months of school before gradually returning part-time. By the following grade, I had fully recovered. Unfortunately, I again became ill at age 32 immediately after an upper respiratory infection. This time, the illness is chronic.

Doctor David Bell mentioned the two age ranges during a California presentation in December 2015.

https://www.youtube.com/watch?v=lm29p-6GaZw

The segment that relates to this issue is very short -- starting at approximately the 41:30 mark.

You might also find the following of interest: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4189623/

Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008–2012

This research report contains a number of graphs that show the two age peaks mentioned.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4189623/figure/Fig1/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4189623/figure/Fig2/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4189623/figure/Fig3/

Thanks for posting the video, @Diwi9 , and for mentioning small fiber neuropathy, @voner . This is a condition I've also been diagnosed with. It sounds like Mady Hornig's video will be worth watching for me.

 

At around 21:50 she briefly mentions looking into the "blood metabolites" that are being created by the bacteria in the microbiome (or which are being produced by the body in response to the constituents of the microbiome).

I have wondered if there could be some bacteria or yeast in the microbiome that is essentially producing something fairly disruptive to the body. Could such a microbiome metabolite be the unknown molecule that Dr. Davis is looking for, for instance?

In the case of fungi, the yeast Saccharomyces cerevisiae in the gut produces ethanol in "auto brewery syndrome," which, in turn, can produce ME/CFS-like symptoms. Ethanol itself is broken down in the liver into acetaldehyde, which may also contribute to hangover symptoms. The yeast candida albicans can produce acetaldehyde directly in the gut.

But it could be anything.

How much do we know about the metabolites that are produced by the components of the microbiome? Could there be some oddball microbe in there producing something that no one tests for?

 

Indeed