Solve ME/CFS webinar with Maureen Hanson Sept.1

bobby

Well-Known Member
looks like the first day of September is going to be a busy day!

register here: http://bit.ly/2ayNg0k
This webinar will feature Dr. Hanson’s work on ME/CFS and is an opportunity to pose questions to Dr Hanson on this recent study as well as ongoing work on the topic. This is part of our commitment to bring the most current information to the community and disseminate progress in science and research in a regular and timely manner.
 

bobby

Well-Known Member
@Who Me? well... they are both (hanson and younger) at the same time so we'll all have to arrange who listens in on which and then report back?
 

bobby

Well-Known Member
I posted this about Hanson so that everyone would know and someone else (less brainfogged than me) would report back. So it seems like we got it all covered! ;)
 

bobby

Well-Known Member
Looks like our prayers were answered: Jarred Younger's Q&A got moved to one day later: September 2nd. So we'll be able to listen in on both if we want!
 

bobby

Well-Known Member
I wasn't sure if I was going to be able to listen in, but I did. it was very interesting!! I saved a few of the most interesting slides, but am not sure if I'm allowed to post them here? @Cort

One major thing though... they did a smaller metabolomics study similar to naviaux and very similar results came out of it!!!

Because of lack of funding (as per usual) they could only study a small cohort (17 patients + 15 controls, or vice versa), only female patients because small cohort. Also smaller number of metabolites. But so just like in the Naviaux study, they found out that we are metabolically in a state of hypometabolism.

this is starting to look VERY promising...
 

keepinghopealive

Active Member
I wasn't sure if I was going to be able to listen in, but I did. it was very interesting!! I saved a few of the most interesting slides, but am not sure if I'm allowed to post them here? @Cort

One major thing though... they did a smaller metabolomics study similar to naviaux and very similar results came out of it!!!

Because of lack of funding (as per usual) they could only study a small cohort (17 patients + 15 controls, or vice versa), only female patients because small cohort. Also smaller number of metabolites. But so just like in the Naviaux study, they found out that we are metabolically in a state of hypometabolism.

this is starting to look VERY promising...
That's great to hear, Bobby. What did she say is the connection between hypometabolism and the gut bacteria? And what did she say about treatment?
 

bobby

Well-Known Member
@keepinghopealive She didn't really say anything about a connection between gut and hypometabolism, as these were two completely different studies she did. The gut one we have all seen already, but the metabolomics one is still under review (waiting for publication). They studied over 300 metabolites and almost every single one of them was lower than controls = hypometabolic state. there was a significant overlap between the naviaux study and the hanson study in terms of specific metabolite shortages.

Before we know what we can do in order to influence this hypometabolic state we need more and bigger studies. She said it's important to have big cohorts with lots of information on each patient (general extensive blood panels etc), so they can start connecting more dots and get to the bigger picture.

re: the gut study and if we can do anything in terms of treatment she also said it is hard to say at this point. partially because a lot of the bacteria that we supposedly have a shortage of, science isn't able to produce them yet in the form of some probiotic.

the only one that she mentioned that we would be able to take was bifidobacteria, but she says there is no way to know if this is beneficial, or could even potentially be harmful. (she mentioned a study on probiotics for Crohn's patients, because they have similar gut bacteria shortages - not all probiotics turned out to be safe, some even harmful, so we should probably be mindful of this before we start randomly trying pro/prebiotics.)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I wasn't sure if I was going to be able to listen in, but I did. it was very interesting!! I saved a few of the most interesting slides, but am not sure if I'm allowed to post them here? @Cort

One major thing though... they did a smaller metabolomics study similar to naviaux and very similar results came out of it!!!

Because of lack of funding (as per usual) they could only study a small cohort (17 patients + 15 controls, or vice versa), only female patients because small cohort. Also smaller number of metabolites. But so just like in the Naviaux study, they found out that we are metabolically in a state of hypometabolism.

this is starting to look VERY promising...
That is sooooo cool....

That can only increase efforts to look more deeply into metabolomics...

As I noted in the blog - http://www.healthrising.org/blog/2016/09/01/metabolomics-naviaux-chronic-fatigue-syndrome-core-problem/ - it makes perfect sense to me at least given all the other brain findings, low blood volume, low aerobic capacity, low NK cell functioning that some pretty big hypometabolism (if you can have "big hypo something) is going on.
 

bobby

Well-Known Member
it makes perfect sense to me at least given all the other brain findings, low blood volume, low aerobic capacity, low NK cell functioning that some pretty big hypometabolism (if you can have "big hypo something) is going on.
it makes a lot of sense to me too! I keep thinking about how this connects to my symptoms and it would explain pretty much everything. (my only hope is that this gets replicated enough soon so that we know for sure. there's nothing worse than getting your hopes up and seeing them smashed time and again...)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
@keepinghopealive She didn't really say anything about a connection between gut and hypometabolism, as these were two completely different studies she did. The gut one we have all seen already, but the metabolomics one is still under review (waiting for publication). They studied over 300 metabolites and almost every single one of them was lower than controls = hypometabolic state. there was a significant overlap between the naviaux study and the hanson study in terms of specific metabolite shortages.

Before we know what we can do in order to influence this hypometabolic state we need more and bigger studies. She said it's important to have big cohorts with lots of information on each patient (general extensive blood panels etc), so they can start connecting more dots and get to the bigger picture.

re: the gut study and if we can do anything in terms of treatment she also said it is hard to say at this point. partially because a lot of the bacteria that we supposedly have a shortage of, science isn't able to produce them yet in the form of some probiotic.

the only one that she mentioned that we would be able to take was bifidobacteria, but she says there is no way to know if this is beneficial, or could even potentially be harmful. (she mentioned a study on probiotics for Crohn's patients, because they have similar gut bacteria shortages - not all probiotics turned out to be safe, some even harmful, so we should probably be mindful of this before we start randomly trying pro/prebiotics.)
She is really getting around. She's on Simmaron's Board as well. She seems like a really careful researcher and she has a relative with ME/CFS.
 

keepinghopealive

Active Member
@keepinghopealive She didn't really say anything about a connection between gut and hypometabolism, as these were two completely different studies she did. The gut one we have all seen already, but the metabolomics one is still under review (waiting for publication). They studied over 300 metabolites and almost every single one of them was lower than controls = hypometabolic state. there was a significant overlap between the naviaux study and the hanson study in terms of specific metabolite shortages.

Before we know what we can do in order to influence this hypometabolic state we need more and bigger studies. She said it's important to have big cohorts with lots of information on each patient (general extensive blood panels etc), so they can start connecting more dots and get to the bigger picture.

re: the gut study and if we can do anything in terms of treatment she also said it is hard to say at this point. partially because a lot of the bacteria that we supposedly have a shortage of, science isn't able to produce them yet in the form of some probiotic.

the only one that she mentioned that we would be able to take was bifidobacteria, but she says there is no way to know if this is beneficial, or could even potentially be harmful. (she mentioned a study on probiotics for Crohn's patients, because they have similar gut bacteria shortages - not all probiotics turned out to be safe, some even harmful, so we should probably be mindful of this before we start randomly trying pro/prebiotics.)
Awesome! Thank you!!
 

bobby

Well-Known Member
A few slides of yesterday's talk, about the findings in the plasma metabolite pilot study:
replication naviaux0.jpg
replication naviaux1.jpg
replication naviaux.jpg
 

bobby

Well-Known Member
a case study following the gut dysbiosis study - two twin brothers, one healthy, one with ME/CFS (diagnosed through VO2max). ME/CFS brother had clearly reduced gut microbiome diversity.
twins.jpg
twins2.jpg
 

bobby

Well-Known Member
When the gut dysbiosis study was published, Hanson's team noticed the pictures used in news articles were very inappropriate. She wonders if patient organisations could offer better alternatives.
inappropriate images.jpg
 

bobby

Well-Known Member
and she ended with some interesting news: Cornell has agreed to open an ME/CFS center for biomed research. Because of the disagreement about the name of the illness, they chose this: Center for Enervating Neuroimmune Disease. (according to the dictionary enervating means 'causing you to feel weak and lacking in energy')
CENID.jpg
 

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