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

[TrixieStix]

I think that's exactly what the NIH are planning as part of its study (only not just metabolomics).

I worry about any study that asks sick patients to do the exercise challenge as it can and has worsened patients. Dr. Bateman has spoken about how she does not recommend patients undergo such testing due to the risk of making their disease worse.

 

[TrixieStix]

But for others it does nothing. I am the opposite and feel MUCH better after eating a meal. strict diets do nothing for me and eating smaller portions or less leaves me with no energy. a decent sized meal adds on the pounds but gives me an instant energy boost. I don't know why this is.

I thought this was an important excerpt from Dr. Maureen Hanson's webinar this weekened.

"A number of different interventions and number of different pre- or probiotics were used and in some cases these are beneficial but note that in some cases they actually did harm to the patients, so we can't just automatically assume that prebiotics or probiotics are always going to be beneficial, and that's why we definitely need more studies to find out what might be beneficial to alter the gut microbiome in ME/CFS."

 

[TrixieStix]

How much are they charging?

Open Medicine Institute's Clinic just emailed me their fee chart last week after I inquired. Payment due at time services are rendered & no insurance accepted. It says prices as of July 20, 2015 are as follows....

Initial appt & first follow-up appt (1 hr appts) $525 each, 30 minute or less follow-up appts $425 each, 30 minutes or longer follow-up appts $525 each, and phone follow-up appts are same price as in-person appts.

 

[KME]

I am at the 3 year mark, and suffer from intermittent states. I ping pong back and forth from a mild hypo state to a hypo state depending on different environmental factors (outside temperature, and seasonal influences). I also experience minutes (up to one hour) of feeling almost completely normal. So because of my ongoing daily fluctuations, (mild hypo, hypo, normal) my symptoms do not align with Naviaux's theories/models.

I imagine Naviaux's model accommodates plenty of fluctuation in moment-to-moment symptoms. Symptoms of many diseases fluctuate like this from minute to minute, day to day, month to month, with people being asymptomatic at times and very symptomatic at others but I suspect that the basic chemical signature of metabolites would look roughly the same from minute to minute or day to day - but of course I'm just speculating, Davis or Naviaux would probably have a data-based answer. Over longer periods I imagine the chemical signature could change e.g. if you are getting better or getting worse as opposed to just having PEM, but again, the experts will know. I think of it as being permanently in a hypometabolic state (aka always having ME/CFS) but other things fluctuating e.g. ATP levels.

Or maybe your metabolites would show you switching in and out of dauer, as your body attempts to get you out of it, who knows? (Naviaux and Davis probably know!) A nice rationale there for studying milder patients' metabolites or patients who seem to be recovering or are in remission and comparing to those in relapse or deteriorating. That way we could potentially see which are the key metabolites to change to get out of dauer! Although I suppose given the 75%/25% split they could be different for every patient...

 

[adreno]

I'm beginning to feel that prolonged ATP depletion is irreversible damage to the mito membrane and the cell dies. We can only protect the new mitos (that may not be as efficient) to prevent worsening.

Your body can generate new mitochondria.

 

[Mij]

@adreno yes I know this, but my doctor explained that the new mitos "daughter" are not as productive/efficient as the "mother" mitos that were damaged..

The new mitos are more fragile I guess is what I'm trying to say. And possibly less of them so our energy production is still limited.

 

[Manganus]

I haven't got through this thread by any means, but this word has been vexing me, too. It's German. If I want a better (more transparent) word, I guess I would start with the German-English dictionary on linguee:

I believe you (many of you) make too much out of the term's litteral meaning.

It is one, of many, described hibernation-like states.
If, really, the cfs/me condition is more like that hibernation-like state than other similar states in other animals, none of us can really know (yet).

Those interested in how the term is used, and what it stands for, may look here:
http://www.wormbook.org/chapters/www_dauer/dauer.html

 

[mermaid]

I posted this in another area, for Ben Howell but as yet no reply, and I was hoping that someone with a scientific brain (I don't have) might comment to see if it makes sense.....
I thought it might be useful if it does, for me to explain myself to my GP and endocrinologist, as even if they don't agree it might give them cause to think if I give them the latest research.

I am diagnosed with both hypothyroidism and ME/CFS, the hypothyroid condition long before the ME/CFS, so it's properly recognised with high TSH (at the time before treated)....I took T4 only for 17 years before I began to explore other options due to lack of function (by this time I also had the ME/CFS label).

Having read a lot around the subject I understood that there were some on T4 only who believed that their T4 only medication was not being converted in the body to T3 very efficiently, thus meaning that their hypothyroid condition was not well managed, and they still felt ill in many ways. Blood tests may show all is OK with the TSH, but they are unable to check the tissues which may show a different story.

NOW.... if this new research indicates that we with ME/CFS are in a state of hypometabolism, would this not impact on the way someone who was on T4 only would convert to T3 in the body? Depending on how ill we were at any one time, then everything would slow down? Might this not be an explanation to people who say we need T4 only? (as happens a lot in the UK).

 

[hixxy]

My temperature drops even further during the state of PEM. I think this reflects the metabolism getting into a crisis due to dangerously low ATP.



Me too. Back when I was less sick I would get the fever and seizure-like blackouts from exertion but as I crashed further and further into Dauer my temp now drops when I push too hard. Sepsis of course can present with either high or low temp. The ones with low temps have worse outcomes, probably because they metabolism is crashed due to the infection and they can't fight it off.

I've been wondering if everyone with seizures in ME are all actually having seizures? I'm sure some would be, but I personally get dystonia on a day to day basis which gets worse with crashes, but I also get dystonic attacks (/sympathetic storms) which look really similar to seizures. I'm fully conscious throughout and they can be quite scary.

I initially had an EEG years ago after the first one which was negative.

 

[M Paine]

NOW.... if this new research indicates that we with ME/CFS are in a state of hypometabolism, would this not impact on the way someone who was on T4 only would convert to T3 in the body?

Hi @mermaid, I tried to find a full list of metabolites to see if they included metabolites involved in deiodination from tetraiodothyronine to triiodothyronine.

In the paper, they mention the following:
Data deposition: The data reported in this paper have been deposited in the NIH Metabolomics Data Repository and Coordinating Center (DRCC) (accession no. ST000450).

Unfortunately that page doesn't seem to work... http://metabolomicsworkbench.org/data/DRCCMetadata.php?Mode=Study&StudyID=ST000450

Perhaps someone else can get access to the data to extract a list of the metabolites which were measured.

 

[Sidereal]

I've been wondering if everyone with seizures in ME are all actually having seizures? I'm sure some would be, but I personally get dystonia on a day to day basis which gets worse with crashes, but I also get dystonic attacks (/sympathetic storms) which look really similar to seizures. I'm fully conscious throughout and they can be quite scary.

I initially had an EEG years ago after the first one which was negative.

Mine are definitely not epileptic seizures. It's more like a sudden sympathetic discharge and trouble moving or understanding what's happening, flushing, fever etc. Hasn't happened in years, though. Used to happen when I was still trying to do things before I understood or accepted the extent of disability imposed by the low energy Dauer state.

 

[alex3619]

I imagine Naviaux's model accommodates plenty of fluctuation in moment-to-moment symptoms.

That is the problem with evaluating single states, frozen at a point in time from a blood sample, for highly dynamic processes. However there must be considerable stability too. Some longtitudinal tracking of patients, including circadian tracking, might be an idea.

 

[alex3619]

Unfortunately that page doesn't seem to work...

It may be that its not updated yet. I imagine it takes time for the records to become available.

 

[alex3619]

If, really, the cfs/me condition is more like that hibernation-like state than other similar states in other animals, none of us can really know (yet).

There may be similarities, but its fairly sure its not the same. We need the science to be done for us to really understand it.

 

[alex3619]

the new mitos "daughter" are not as productive/efficient as the "mother" mitos that were damaged.

Under this hypothesis, the mitochondria are not damaged but suppressed. More mitochondria might help, or might trigger a feedback loop and make things worse.

In any case its rare for all mitochondria to be damaged. Sure, damaged mitochondria are not great candidates for replication, but the undamaged mitochondria are another thing entirely.

[Corrected a typo that reversed the meaning of my second sentence. Doh, third mistake in half an hour. Need a nap.]

 

[mermaid]

Hi @mermaid, I tried to find a full list of metabolites to see if they included metabolites involved in deiodination from tetraiodothyronine to triiodothyronine.

In the paper, they mention the following:
Data deposition: The data reported in this paper have been deposited in the NIH Metabolomics Data Repository and Coordinating Center (DRCC) (accession no. ST000450).

Unfortunately that page doesn't seem to work... http://metabolomicsworkbench.org/data/DRCCMetadata.php?Mode=Study&StudyID=ST000450

Perhaps someone else can get access to the data to extract a list of the metabolites which were measured.

Thank you for trying @M Paine At least you understand the concept I was trying out! (but lacking the scientific terminology....)

 

[TrixieStix]

More and more interesting, so I hope this is considered related enough to the article to be considered 'on topic'.

Weirdly, the creepiest 'cytokine storm' moment I've ever had was when I started feeling 'off', checked my temperature -- it was dropping -- and moved quickly to bed. Despite the lower-than-usual temperature, it was like I could feel something scary coming. By the time I made it to bed I was shaking, feeling like I was freezing. I got scared and checked my temp again -- normal?! But five minutes later it had climbed to 100 F.

I went from around 97 F to around 103 F -- for our Celsius friends, that's 36 to 39.5 degrees -- in 15 minutes.

Since then I've observed that my temperature always drops right before I'm about to get a fever with this illness. I've never had anything that dramatic happen again, but when I start to feel crappy, my temperature is low, and a short time later it's a mild fever.

-J

same here. when I have a bad PEM crash my temperature is lower than my personal normal. But I don't get an elevated temp unless I have a cold, virus, or acute infection.

 

[hixxy]

same here. when I have a bad PEM crash my temperature is lower than my personal normal. But I don't get an elevated temp unless I have a cold, virus, or acute infection.

My temperature drops when I crash and I get body wracking chills. It never rises. I don't ever get colds, gastro, viruses, etc.

 

[TrixieStix]

I've been wondering if everyone with seizures in ME are all actually having seizures? I'm sure some would be, but I personally get dystonia on a day to day basis which gets worse with crashes, but I also get dystonic attacks (/sympathetic storms) which look really similar to seizures. I'm fully conscious throughout and they can be quite scary.

I initially had an EEG years ago after the first one which was negative.

this is interesting as 5 months ago during my worst ever PEM "crash" the first day of it I began having uncontrollable and very pronounced jerking of my left leg, left arm and my head. I was given a MRI with contrast of my brain and spine but it did not show any abnormalities.

 

[Mij]

@alex3619 are they saying here that there is no mito suppression during torpor in the brain?

http://www.journals.uchicago.edu/doi/10.1086/668853