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

[RL_sparky]

I wouldn't label 60 as severe; people who are severe like myself wished we functioned at the level

I was part of the trial and put down 60 on the Karnofsky questionnaire. The Karnofsky scale is sciffoso in my opinion.
60 is no panacea. I'm in a recliner or bed most of the day. I need others to shop, cook and clean. I'm able to do basic care functions but can't drive or even handle being out of the house.

 

[Gingergrrl]

sciffoso

What does this mean?!

 

[RL_sparky]

What does this mean?![/QUOTE
Italian for dreadful, awful, disgusting etc...

 

[snowathlete]

The paper states "The data in this paper have been deposited in the NIH Metabolomics Data Repository and Coordinating Center (DRCC) [accession no. ST000450]"

They just shared the data? Just like that? Pity, I was looking forward to submitting a freedom of information request for the data, waiting for it be rejected as vexatious, taking it to the information commissioner, and then fighting multiple court appeals for years before being vindicated and getting to see the data. Oh, wait, that only happens in the UK with dodgy behavioural research. My bad. (for anyone with no idea what I'm talking about, I'm delighted (and not surprised) that the data from this excellent research has been shared).

 

[dannybex]

I was part of the trial and put down 60 on the Karnofsky questionnaire. The Karnofsky scale is sciffoso in my opinion.
60 is no panacea. I'm in a recliner or bed most of the day. I need others to shop, cook and clean. I'm able to do basic care functions but can't drive or even handle being out of the house.

Do they require you to choose on 'the tens'? Just from your description you sound more like a 45, if that. (And same here.)

 

[Gingergrrl]

Do they require you to choose on 'the tens'? Just from your description you sound more like a 45, if that. (And same here.)

Agreed and you sound lower than a 60 to me (@RL_sparky ) from what you described.

 

[Research 1st]

20 on the Karnofsky scale is what it's like to have severe, life long, housebound ME for many.

To put that in context, an estimated 1 in 4 ME sufferers are ill enough to be permanently hospitalized.

 

[Never Give Up]

http://naviauxlab.ucsd.edu/science-item/chronic-fatigue-syndrome-research/

Commonly used clinical diagnostic criteria include the Fukuda4, Canadian5, and Institute of Medicine (IOM)6 criteria. These clinical criteria are essential for accurately identifying possible cases of CFS. However, the accuracy of clinical diagnosis is improved when additional objective testing is available.

In our studies of genetic forms of mitochondrial disease we developed a novel mass spectrometry-based method that allows us to measure over 500 molecules in the blood. Some people have likened these NextGen metabolomics methods to a new lens, like the Hubble telescope, that allow us to see deeper and with greater clarity into the universe of the cell than has been possible before.

In our first studies of CFS we wanted to answer 3 basic questions:

Can NextGen Metabolomics be used to assist with the diagnosis of CFS?

Can the chemical information provided by metabolomics be used to help with the development of treatment plans tailored to the individual?

Does a systems analysis of the metabolic abnormalities found in CFS lead us to a better understanding of the root biology underlying the disease?

In a study conducted in collaboration with Dr. Eric Gordon, we have completed a metabolomics study of 84 subjects with chronic fatigue syndrome meeting the criteria of Fukuda, the Canadian, and the IOM. The paper describing the results has been published at PNAS (Open Access link) (PDF) (UC San Diego Press Release).

The results for this first study using our NextGen metabolomics platform are very exciting. We have been able to show that CFS has a chemical signature that can be identified using targeted plasma metabolomics. The pattern and directionality of these changes showed that CFS is a conserved, hypometabolic response to environmental stress similar to dauer, which is a hypometabolic syndrome seen in other organisms. Only about 25% of the metabolite disturbances found in each person were needed for the diagnosis of CFS. About 75% of the metabolite abnormalities were unique to the individual and could be useful in guiding personalized treatment. The finding of an objective chemical signature in CFS helps to remove diagnostic uncertainty, will help clinicians monitor individualized responses to treatment, and will facilitate multicenter clinical trials.

Learn more about the study and its implications in this Metabolomics Q&A

We are now planning the next study to validate the results of the first study in a larger population of CFS patients distributed throughout North America in collaboration with Dr. Paul Cheney. Metabolomics results will be compared with genomics in collaboration with Dr. Ron W. Davis at Stanford. If you would like to learn more about this study please reach out to us via our Contact page.

 

[Neunistiva]

Its easy to get an abundance of high energy foods, or macronutrients, for most in the Western World. However our ancestors probably ate far better in terms of micronutrients such as vitamins and minerals, but this might include small active molecules such as plant antioxidants. A huge percentage of the Western population, and nobody really knows the exact figure, is both overfed and starving, depending on whether you are talking about macronutrients or micronutrients.

For what it's worth, and I know it's not worth much, but I am Croatian and have grown up on vegetables from my grandfathers garden, fish he caught with lines and hooks and locally grown produce and meat. A lot of vegetables and fruit I eat are not the oversized selected modern plants, but tiny bitter wild varieties.

Of course there's no way it's same as a few thousand years ago, but I think it's probably as close to it as possible in today's world.

And still I got severe ME/CFS when I was 23.

 

[wdb]

They just shared the data? Just like that? Pity, I was looking forward to submitting a freedom of information request for the data, waiting for it be rejected as vexatious, taking it to the information commissioner, and then fighting multiple court appeals for years before being vindicated and getting to see the data. Oh, wait, that only happens in the UK with dodgy behavioural research. My bad. (for anyone with no idea what I'm talking about, I'm delighted (and not surprised) that the data from this excellent research has been shared).

Can you find ST000450 though, unless I'm looking in the wrong place the listed studies only go up to ST000409 ?

 

[Research 1st]

For what it's worth, and I know it's not worth much, but I am Croatian and have grown up on vegetables from my grandfathers garden, fish he caught with lines and hooks and locally grown produce and meat. A lot of vegetables and fruit I eat are not the oversized selected modern plants, but tiny bitter wild varieties.

Of course there's no way it's same as a few thousand years ago, but I think it's probably as close to it as possible in today's world.

And still I got severe ME/CFS when I was 23.

It just goes to show, that people can eat fresh, good quality food but get sick as easily as someone who lives on junk food.

 

[medfeb]

They just shared the data? Just like that? Pity, I was looking forward to submitting a freedom of information request for the data, waiting for it be rejected as vexatious, taking it to the information commissioner, and then fighting multiple court appeals for years before being vindicated and getting to see the data. Oh, wait, that only happens in the UK with dodgy behavioural research. My bad. (for anyone with no idea what I'm talking about, I'm delighted (and not surprised) that the data from this excellent research has been shared).

LMAO!!!

 

[Tom_Nightingale]

Well, consider the classic peanut or bee sting allergy that can kill you with an entirely unnecessary anaphylactic reaction. It's clearly maladaptive, but it's closely tied in with very useful functions, and not likely to go away any time soon. I think that just about any auto-immune disease might be in the same category.

Thanks, that's helpful. The immune system clearly provides a number of cases

Its easy to get an abundance of high energy foods, or macronutrients, for most in the Western World. However our ancestors probably ate far better in terms of micronutrients such as vitamins and minerals, but this might include small active molecules such as plant antioxidants. A huge percentage of the Western population, and nobody really knows the exact figure, is both overfed and starving, depending on whether you are talking about macronutrients or micronutrients.

Then there are all those weird modern chemicals, including trace radioactive isotopes etc., plus a growing elecromagnetic signal that might interfere with voltage gated ion channels. We are still largely in the dark with even identifying all the potential issues.

In the dark indeed. But this research has given me something to hold, I've been in the speculative mood ever since Tuesday night! Speculations aside, I'm very encouraged by all the bright minds working on all this professionally and by amateurs. I'll share here a cool post on the CFS subreddit by user TomasTTEngin:

After the groundbreaking paper released yesterday, I was googling away on hypometabolism, trying to find out what we knew about it. I found Kenneth B Storey, who operates this lab in Canada.

http://kenstoreylab.com/

He seems like the leading expert on hypometabolism at the moment, so I emailed him the Naviaux paper from yesterday.

His reply which follows, included a link to the above paper.

>Thanks for introducing me to this very interesting hypothesis. Our lab dabbled with the responses of C. elegans versus what we were seeing in hibernating mammals.

>You can see the overview : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2808051/

>The first author works on C. elegans actively and I have copied him here – he is THE one to go to with questions and comments on this paper.

(This is the guy he copied in. http://www.sickkids.ca/Research/AbouttheInstitute/Profiles/DSCB/lant-profile.html)

>We continue to study various mammals [ and even a primate] that can depress their metabolic rate. To you they outwardly might seem to have CFS. http://www.ncbi.nlm.nih.gov/pubmed/?term=storey+kb+hibernation

>kenstorey

 

[snowathlete]

Can you find ST000450 though, unless I'm looking in the wrong place the listed studies only go up to ST000409 ?

guess they appear in batches?

 

[Deltrus]

I wonder if there are two viruses, one that causes the hypometabolic state, and one that capitalizes on it, and perpetuates it.

For example, maybe an enterovirus needs sphingolipid pathways to proliferate, while herpesvirus can only be defeated with sphingolipid pathways. (perhaps NK cells need them or something, herpesvirus removal is heavily dependent on NK cells)

 

[JaimeS]

For what it's worth, and I know it's not worth much, but I am Croatian and have grown up on vegetables from my grandfathers garden, fish he caught with lines and hooks and locally grown produce and meat. A lot of vegetables and fruit I eat are not the oversized selected modern plants, but tiny bitter wild varieties.

Of course there's no way it's same as a few thousand years ago, but I think it's probably as close to it as possible in today's world.

And still I got severe ME/CFS when I was 23.

Definitely clean living will not save you. Compare me and my sister.

EdPhD grew up eating whatever: chips/crisps, ice cream right out of the carton, Diet Coke every day, no mindfulness practices (yoga/meditation), classic overcaffienated creature. Still the same, even after she got ME.

Then there's me. Raised the same, obviously, but started to get into health and wellness as a teen, and by the time I was in my early 20s, a very cautious eater, mindful, etc. Still got ME at age 28-29.

To be fair to such interventions, after I got sick I got way MORE careful about my health -- don't we all? -- and noticed changes in health based on diet. However, having a decent diet in the first place doesn't seem to have saved me.

 

[JaimeS]

I wonder if there are two viruses, one that causes the hypometabolic state, and one that capitalizes on it, and perpetuates it.

Probable. Initial stressor may actually be stopped by lipid rafts, but pro-lipid raft pathogens would then take advantage!

 

[RL_sparky]

Do they require you to choose on 'the tens'? Just from your description you sound more like a 45, if that. (And same here.)[/QUOTE

I can't remember the format on the questionnaire. Maybe when I choose 60 I was having a better day but I have always disliked the scale as it just doesn't accurately reflect our level of functioning. IMO

 

[Elisa]

Interesting video/talk by Dr Naviaux on Autism / gives us glimpses to his thinking...

 

[gregh286]

Do the lipids that are outstandingly low in the report....shingo etc....do they exist in blood cells and muscle cells?

do lipids they have any influence on blood cell viscoscity, shape and/or rigidity.would it effect the coefficient of friction properties of RBCs. Would the lack of lipids in RBCs create a higher friction environment in the cardiovascular system?

thinking back to dr. les simpsons theory of cfs...ramsays disease.