Emerge Australia ME/CFS International Research Symposium March 12-15, 2019

[suevu]

Does anyone remember which heavy metals Prof Ron Davis said 1/3 of patients were high in?


I've just got a hair metal test back stating my arsenic levels are 72x higher than the normal population! @Learner did you treat just by taking ALA?

Whats your diet to get those leves so high?

 

[Murph]

I was just watching Neil McGregor's presentation on YouTube. (all the presentations are now on YouTube.)

It looks like a good talk, although here's a fair bit in there that has gone over my head. He has a lot of unpublished data from the clinician Don Lewis so this is not a shallow or simple analysis. There's practically a full metabolic theory of ME/CFS in his mind. It requires a very good understanding of cell biology to assess critically, and I don't have that level of understanding so all I can do is nod along. Definitely worth looking at.

Anyway, at the 33 miute mark he starts talking about the Liver and bile acids. I thought I should alert @mariovitali !

 

[mariovitali]

@Murph

Thank you for the shout out. I think that we have more "signals" that in many PwME the liver may be involved.


Recall that Professor Garisnik mentioned about pathways MEK and ERK1/ERK2. Interestingly, Machine Learning has identified several genes along a specific pathway that includes MEK and ERK as shown below :

Observe where GAS6, MERTK, GRB2, RHOA, and EGFR reside along with MEK,ERK.

FAS Ligand (FASLG) has been mentioned by Michael Sikora at Stanford on a previous presentation.

Yet one more example from Mark Davis , for FGF21 at the latest NIH conference.

We are getting there, we just have to put the pieces of the puzzle together. We have the technology to do so but no one chose to use it so far.

Things may be changing with UC Davis and Dr Fiehn's approach (who mentions bile acids in his presentation !). We shall see.

 

[Gemini]

Emerge Australia just launched a new Symposium website featuring all of the videos, conference reports, photo gallery, transcription documents and in the future, information about their next conference...

https://mecfsconference.org.au

 

[ljimbo423]

Anyway, at the 33 miute mark he starts talking about the Liver and bile acids.

View attachment 32340

At 36:45 seconds in, on the "Conclusions" slide (at the next to the last bullet point) it explains that "increased Taurine bile salts occur in a large majority and may be associated with altered gut barrier function, which in turn may be associated with bacteraemias and increased absorption of gut based metabolites".

 

[Rufous McKinney]

@ljimbo423 - tripping you posted this today: as I am confronting negative test results on blood sugar from yesterday.

Working on blood sugar for the last five months: almost nothing left to eliminate. How can my blood sugar be this bad?

Well: see presentation above. Perfect timing.

 

[Rufous McKinney]

Well: see presentation above. Perfect timing.

I really needed that....we (well, I) cycle around feeling that somehow we just DIDN:T do enough. Somehow I just STILL didn't fix enough things perceived to be under my control. So I just feel so much better knowing its not ALL about my inadequacies in Attending To: this awkward and challenging situation.

 

[ljimbo423]

I really needed that....we (well, I) cycle around feeling that somehow we just DIDN:T do enough. Somehow I just STILL didn't fix enough things perceived to be under my control. So I just feel so much better knowing its not ALL about my inadequacies in Attending To: this awkward and challenging situation.

According to the presentation 90% of us with ME/CFS have blood sugar control problems. So you aren't alone!

 

[bertiedog]

According to the presentation 90% of us with ME/CFS have blood sugar control problems. So you aren't alone!

This was the first thing that I found out I had a problem with, ie severe hypoglycemia. I originally thought that all I had to do was to correct this and my problems would be solved! How wrong I was. BTW That was around 20 years ago!

It is greatly improved because of my daily 6 mg Prednisolone but it hasn't sorted the extreme way my body acts to exercise and blood sugar. These days my blood sugar never gets back to its fasting level during daytime, only at night. It stays around 6 but fasting is 4.7 and after a walk it drops quickly to around 5.2 but then I am left with a huge necessity to eat because I feel so weak and then it goes back up to around 6.3. Cannot win!

Pam

 

[suevu]

This was the first thing that I found out I had a problem with, ie severe hypoglycemia. I originally thought that all I had to do was to correct this and my problems would be solved! How wrong I was. BTW That was around 20 years ago!

It is greatly improved because of my daily 6 mg Prednisolone but it hasn't sorted the extreme way my body acts to exercise and blood sugar. These days my blood sugar never gets back to its fasting level during daytime, only at night. It stays around 6 but fasting is 4.7 and after a walk it drops quickly to around 5.2 but then I am left with a huge necessity to eat because I feel so weak and then it goes back up to around 6.3. Cannot win!

Pam

SAme here, however there is a subset of patients that can fast all day long or even two days and dont have sugar drops.

I have improved greatly after my FMTs, now I can have dinner at 10 pm and not eat anything till the next day at 12-13 am with no sugar drops, so IM absolutely sure this is strongly related to the microbiome.

Only one year ago it couldnt even go 2-3 hours without food.

 

[bertiedog]

It looks like a good talk, although here's a fair bit in there that has gone over my head. He has a lot of unpublished data from the clinician Don Lewis so this is not a shallow or simple analysis. There's practically a full metabolic theory of ME/CFS in his mind. It requires a very good understanding of cell biology to assess critically, and I don't have that level of understanding so all I can do is nod along. Definitely worth looking at.

Thanks for posting this link, I have only just caught up with it. I found Dr McGregor's talk fascinating because I could relate to quite a lot of it. When I did my last Genova Organic urine test I had loads of metabolites that were very high and this ties in with his presentation. Its not that we are low in many substances needed for energy, its that we use them up so rapidly there is nothing left for our ATP.

Also fascinating the blood sugar differences as that has been an obvious problem for me for over 25 years.

I also have the gut issues that are linked to the difficulties we have.

The only piece of the jigsaw that seems to be missing from his talk is what we have to do to fix it!!

Pam

 

[bertiedog]

SAme here, however there is a subset of patients that can fast all day long or even two days and dont have sugar drops.

I have improved greatly after my FMTs, now I can have dinner at 10 pm and not eat anything till the next day at 12-13 am with no sugar drops, so IM absolutely sure this is strongly related to the microbiome.

Only one year ago it couldnt even go 2-3 hours without food.

Thats very good to know and I am very jealous! I have thought for a long time it was connected to my microbiome. When I wake up even at 5.30 am I have to stop myself from eating the soya yoghurt with natural fibre that I have next to my bed to top me up before I get out of bed. I feel that the bugs in my gut are screaming at me that they want to be fed, like NOW!

I sometimes manage to go back to sleep for about 30 minutes but then when I wake up I know that I won't be sleep anymore so allow myself to have that yoghurt even if its only 6.15 am. To be honest I could eat it during the middle of the night if I was awake but thankfully because of my new regimes of 25 mg Lyrica plus 1/2 mg melatonin at bedtime I now sleep deeply from around 11.30-5.30 am.

The only positive is that somehow I have remained slim despite frequent top ups of nuts and seeds. Its probably due to the 2grains of desiccated thyroid meds I take because if I cut the dose back a bit I immediately start putting weight on and have big muscle issues.

I know I have low diversity and was lacking lactobacillus and very low in bifido bacteria. To try and remedy this I have added around 6 teaspoons of organic oats to my yoghurt each day with occasional chia seeds added plus FOS and some probiotic meant for babies and kids! At the end of the month I am going to do another UBIOME to see if there is any improvement.

If the FMT wasn't so expensive I would go ahead and give it a try but only if it was at a hospital who knew what they were doing. I wish the NHS would offer this privately but I don't think they have the personnel to be able to offer this so I cannot see it happening for me.

Pam