Naviaux et. al.: Metabolic features of chronic fatigue syndrome

[adreno]

Personally, I don't think 'hibernation' would be a helpful term for us to use, for various reasons:

I agree; hibernation sounds far too benevolent, comfortable almost. All the wrong connotations.

 

[A.B.]

I agree; hibernation sounds far too benevolent, comfortable almost. All the wrong connotations.

"Snap out of your hibernation".

 

[Sushi]

I agree; hibernation sounds far too benevolent, comfortable almost.

We don't want this image heading news articles:

 

[Bob]

We've already had a photo of a cute and cosy-looking hibernating dormouse in the Daily Mail article. There are worse photos, of course. But we've also had a Whitney Spears (hit-me-baby-one-more-time) photo in an ME/CFS article this week! The mind boggles!

 

[Sasha]

IIRC, this study is currently being replicated on both the OMF "severely ill" group and the moderately ill group.

 

[Nielk]

My cholesterol used to be perfect, but the sicker I got, the lower it dropped. 45 points or so. I've also been on a far more fat-rich diet, but it hasn't shifted, actually.

Is this true for most patients though? I thought it was the reverse. I and some patients I know have elevated cholesterol levels. Was this tested?

 

[Valentijn]

We've already had a photo of a cute and cosy-looking hibernating dormouse in the Daily Mail article. There are worse photos, of course. But we've also had a Whitney Spears (hit-me-baby-one-more-time) photo in an ME/CFS article this week! The mind boggles!

I found both of them to be pleasantly surreal

 

[JaimeS]

Is this true for most patients though? I thought it was the reverse. I and some patients I know have elevated cholesterol levels. Was this tested?

Yup. Multiple times.

I wouldn't say it's true for everyone though -- definitely I've seen some patients who have high cholesterol as well. I'm only able to speak for myself.

Naviaux commented on the article and was very kind.

-J

 

[Countrygirl]

Is this true for most patients though? I thought it was the reverse. I and some patients I know have elevated cholesterol levels. Was this tested?

Mine is persistently very high and is unrelated to diet.

I have a diagnosis of hypertriglyceridemia. Very low BP has now become stage 3 hypertension with bouts of damaging bouts of malignant hypertension. I'd gladly exchange this for the previous hypotension that kept me horizontal for most of 30 years.............I do wonder if other long term ME patients experience this sudden switch. Not sure how this fits with the new paper.

 

[duncan]

If these metabolic features prove to be diagnostic, I have very little problem with them being downstream effects - if that is indeed the case. That it begs the obvious causal question can be placed on the back burner for a short spell to celebrate.

I also have concerns the findings may not prove peculiar to ME, but they are offset by hopes that they will.

I want to know the cause, but for now I will be very happy with a solid and representative characterization of ME/CFS for the huge advance it appears to be - especially if the cause is secondary to the effect. Kudos, Team Stanford. The cheer for the day is Replicate, Replicate, Replicate.

After hoisting a well-earned beer. Or two.

 

[Snow Leopard]

There is more discussion in the supplement in case anyone didn't know:

http://www.pnas.org/content/suppl/2016/08/24/1607571113.DCSupplemental/pnas.1607571113.sapp.pdf

Does anyone know if they give a full list of the metabolites tested?

I haven't seen one yet. I'd like to see the full list too.

 

[Nielk]

Yup. Multiple times.

I wouldn't say it's true for everyone though -- definitely I've seen some patients who have high cholesterol as well. I'm only able to speak for myself.

Naviaux commented on the article and was very kind.

-J

Naviaux told you that he tested the patients' cholesterol and they were all low?

 

[viggster]

The point I'm making is that activity is curtailed in PWME so some downregulation in metabolism might be expected as a consequence.

But the paper did not show "some" downregulation in metabolism. It showed massive, completely maladpative downregulation. Some of the metabolites are many standard deviations out of whack. I think it's smart to look at sedentary healthy people, but I'm guessing they will show nothing at all like what ME/CFS patients show.

 

[viggster]

There is more discussion in the supplement in case anyone didn't know:

http://www.pnas.org/content/suppl/2016/08/24/1607571113.DCSupplemental/pnas.1607571113.sapp.pdf




I haven't seen one yet. I'd like to see the full list too.

They measured over 600 metabolites. {Edited for clarity}

 

[bertiedog]

Autoimmune diseases can be reversed/cured by diet alone - look at Dr Terry Wahls and the folk with MS who are following her and taking part in the trials she is funding. A whole pile of folk with Hashimotos are doing the same, including me. Vast improvements on the autoimmune Paleo protocol. Not popular news here.

I have been following this too having gone gluten and dairy free since May this year. It has had a very good effect on my ability to exercise in a gentle way and also my immune system has been working better. It hasn't done anything to help almost daily migraines nor helped my adrenal and POTS problem though.

Pam

 

[viggster]

How weird that there are so many UK newspaper articles and none from the US... Maybe we can thank the SMC after all, in their haste to downplay the results they have alerted the media.

Look for some US coverage later this week. I am hopeful we'll see some.

 

[bertiedog]

paleo diet is seen as starvation by human body. not exactly what is needed in a dauer state.

I am not following a Paleo diet just low to medium carbs, gluten and dairy free except for a very small amount of cheddar so definitely not leading to starvation but still very good improvements.

Pam

 

[Sasha]

Naviaux commented on the article and was very kind.

Here's what he said:

You did a nice job explaining the implications of the sphingolipids for CFS biology. I had to cut 80% of our sphingolipids results and discussion to meet PNAS page limits. Some of this got relegated to the supplemental online material.

Kudos to you for a very nice job.

Well done, @JaimeS!

 

[Nielk]

Yup. Multiple times.

I wouldn't say it's true for everyone though -- definitely I've seen some patients who have high cholesterol as well. I'm only able to speak for myself.

Naviaux commented on the article and was very kind.

-J

This is a quote from the study:

Total plasma cholesterol, desmosterol, cortisol, and aldosterone were normal in both males and females with CFS.

 

[Daisymay]

Please could someone explain this apparent contradiction to me, I'm finding it hard to understand:

In the Open Medicine Foundation article it states:

http://tinyurl.com/z6sgbbh

"This result supports the controversial idea that while infection is often the initiating event for ME/CFS, it does not contribute to the ongoing illness."

However, the Naviux paper itself states (at the bottom of page 3):

“The low sphingolipid profile in CFS appears to be an adaptive response...and ultimately may represent a fundamental response to oppose the spread of persistent viral and intracellular bacterial infections”.

Not sure how to reconcile those two statements?