End ME/CFS Severe Patient Study Turns to the Mitochondria

[Katie]

Mitochondrial dysfunction rings the truest bell for me. Possibly from what I've learned in nursing and partly from a kinesiology course.
There may be many culprits that start the process of ME/CFS but it makes the most sense to me that the energy production in our cells is off kilter and that makes the most sense for PEM.
When we stress ourselves, through our emotions or exercise, our energy needs are higher but our bodies (cells/mitochondria) just cannot produce the required energy needed and we feel wiped-out and takes days before we can replenish.
Very exciting, can't wait to see where this study goes.

 

[San Diego]

Check out some of Naviaux’s work. Exciting stuff using a 50 year old drug. We are beyond fortunate to have him on board!

This article addresses autism, but of interest is the correction of many abnormalities, including mitochondrial respiratory chain complex activity, using suramin.

Antipurinergic Therapy in autism article

Background
Autism spectrum disorders (ASDs) are caused by both genetic and environmental factors. Mitochondria act to connect genes and environment by regulating gene-encoded metabolic networks according to changes in the chemistry of the cell and its environment. Mitochondrial ATP and other metabolites are mitokines—signaling molecules made in mitochondria—that undergo regulated release from cells to communicate cellular health and danger to neighboring cells via purinergic signaling. The role of purinergic signaling has not yet been explored in autism spectrum disorders.
Objectives and Methods
We used the maternal immune activation (MIA) mouse model of gestational poly(IC) exposure and treatment with the non-selective purinergic antagonist suramin to test the role of purinergic signaling in C57BL/6J mice.
Results
We found that antipurinergic therapy (APT) corrected 16 multisystem abnormalities that defined the ASD-like phenotype in this model. These included correction of the core social deficits and sensorimotor coordination abnormalities, prevention of cerebellar Purkinje cell loss, correction of the ultrastructural synaptic dysmorphology, and correction of the hypothermia, metabolic, mitochondrial, P2Y2 and P2X7 purinergic receptor expression, and ERK1/2 and CAMKII signal transduction abnormalities.
Conclusions
Hyperpurinergia is a fundamental and treatable feature of the multisystem abnormalities in the poly(IC) mouse model of autism spectrum disorders. Antipurinergic therapy provides a new tool for refining current concepts of pathogenesis in autism and related spectrum disorders, and represents a fresh path forward for new drug development.

 

[Rosie26]

Certainly something wrong with my energy production today.

I've tried toning my muscles over the years and I just get PEM and I can't go any further. The muscles don't feel like they can tone up properly.

 

[David L Rice]

@Cort I heard a rumor that Dr. Naviaux already has a paper in the works on ME, have you heard anything about this?

I have heard that JAMA rejected it on the basis that there were not enough subjects.

 

[Anomie]

@Cort Do you have any idea when Ron Davis might release this information? I think that my Dr might be interested in looking at these findings.

 

[mymichelina]

I am interested in the relationship noted to the ANS. Along with the ME/CFS symptoms and related disorders I have Central Sleep Apnea. I also have many other medical issues that arise from the ANS/CNS. In fact it seems that all of my auto-immune disorders and medical problems stem from the nervous system. The central sleep apnea occurs during sleep studies where the ANS does not function when I fall into the deep sleep. I end up having 60 or more apneas an hour on CPAP. No restorative or REM sleep.

Any thoughts?

 

[weyland]

I have heard that JAMA rejected it on the basis that there were not enough subjects.

Not surprising I guess. Other than Ellen Clayton's opinion paper on the IOM report, the JAMA hasn't published any CFS research for like 10 years as far as I can tell.

 

[John Moore]

Rocco Baldelli was said to have mito issues all those years ago...his was a classic case of a robust man in his prime being cut down by this thing.

 

[Cort]

I am interested in the relationship noted to the ANS. Along with the ME/CFS symptoms and related disorders I have Central Sleep Apnea. I also have many other medical issues that arise from the ANS/CNS. In fact it seems that all of my auto-immune disorders and medical problems stem from the nervous system. The central sleep apnea occurs during sleep studies where the ANS does not function when I fall into the deep sleep. I end up having 60 or more apneas an hour on CPAP. No restorative or REM sleep.

Any thoughts?

I wish I had something to add. I would just keep an eye on the research. It seems like this disease and variants cross so many boundaries. I've got to thing that the ANS and CNS play critical roles in it...

If neuroinflammation is found I imagine that could play a role in what's happening with you so it would be good to keep an eye on that.

Do CPAP machines work with central sleep apnea?

He does...but it was turned down for publishment by the JAMA because he does not have enough subjects..so he is trying to get more funding for Dr. Cheney's patients to be in the study..and or look for a different journal to publish. But it will happen eventually.

 

[Snow Leopard]

I have heard that JAMA rejected it on the basis that there were not enough subjects.

Where did you hear this?

JAMA seems to have an anti-CFS bias, looking at their publication history or lack-thereof.

 

[Zapped]

Focusing this Mitochondrial stuff into a 'cause' is really an enigma - like stacking Jello.

Personally, I have read and studied in this field for a long time trying to link my hypothesis that 'stress' is the underpinning cause of CFS/ME as an autoimmune dysfunction, only to arrive back at the beginnings, most frustrated but still optimistic someone will come along with lucid insights.

So, enter the good Dr. Davis, we all hoping he will figure out how to push this rope up the hill and around the bend while we're all on this side of the grass... . Kudos to him.

In the interim, while awaiting telltale results to fall into place I adopted a Zen approach in hopes of stumbling upon some possible new directions as to how all this might correlate, prrhaps appying the process of the recent solution of Fermat's Last Theorem, proven at last after going unsolved since 1637 - only 300+ years... .

So, rather than standing on one leg and clapping with one hand to summon the Bio gods, I renamed one of my two dogs 'Mito' and the other "Chondria"... . I have been cataloging their behaviors in anticipation of observing a casual connection to the interplay of their namesakes... .

'Not sure about all this; do you think another dog, making a triad would make it more likely to observe behaviors in a meaningful direction to find the nefarious keys? ...Maybe name him ''Stress?'

...All pertinent notes will be cheerfully shared with the docs, and JAMA, if they think it's right on!

 

[VLynx]

Do CPAP machines work with central sleep apnea?

People with symptomatic central sleep apnea can be treated using Adaptive-Servo Ventilation instead of CPAP. Kind of like using a ventilator - the device delivers breaths if it detects pauses in breathing.

 

[Cort]

Focusing this Mitochondrial stuff into a 'cause' is really an enigma - like stacking Jello.

Personally, I have read and studied in this field for a long time trying to link my hypothesis that 'stress' is the underpinning cause of CFS/ME as an autoimmune dysfunction, only to arrive back at the beginnings, most frustrated but still optimistic someone will come along with lucid insights.

So, enter the good Dr. Davis, we all hoping he will figure out how to push this rope up the hill and around the bend while we're all on this side of the grass... . Kudos to him.

In the interim, while awaiting telltale results to fall into place I adopted a Zen approach in hopes of stumbling upon some possible new directions as to how all this might correlate, prrhaps appying the process of the recent solution of Fermat's Last Theorem, proven at last after going unsolved since 1637 - only 300+ years... .

So, rather than standing on one leg and clapping with one hand to summon the Bio gods, I renamed one of my two dogs 'Mito' and the other "Chondria"... . I have been cataloging their behaviors in anticipation of observing a casual connection to the interplay of their namesakes... .

'Not sure about all this; do you think another dog, making a triad would make it more likely to observe behaviors in a meaningful direction to find the nefarious keys? ...Maybe name him ''Stress?'

...All pertinent notes will be cheerfully shared with the docs, and JAMA, if they think it's right on!

I look forward to further notes on this topic

 

[LorrieL]

I look forward to further notes on this topic

Have you seen this Jan 2016 article?:
http://www.ncbi.nlm.nih.gov/pubmed/26791940
Title: Mitochondrial DNA variants correlate with symptoms in myalgic encephalomyelitis/chronic fatigue syndrome.

 

[IrisRV]

...my hypothesis that 'stress' is the underpinning cause of CFS/ME...

For clarity, please define stress and explain why while the majority of the population lives with stress, only a small fraction develop ME/CFS. I'd be able to understand your hypothesis better with that information. Or not.

 

[Paw]

For clarity, please define stress and explain why while the majority of the population lives with stress, only a small fraction develop ME/CFS. I'd be able to understand your hypothesis better with that information. Or not.

I have no answer to your great question, but research into PTSD may provide clues. Seems that something can break after a certain amount of a particular type of sustained stress. And PTSD is often described as nearly identical to the ME family of disorders.

 

[Zapped]

For clarity, please define stress and explain why while the majority of the population lives with stress, only a small fraction develop ME/CFS. I'd be able to understand your hypothesis better with that information. Or not.

The above late-night phooey notwithstanding (mine), of course the exact answer to that question is the solution! Here's a more serious-intended attempt to explain.

For now, perhaps an appropriate answer to your question is that stress, like art or love is an amorphous
entity, not as yet subject to quantification on a scale, and may not be necessary to be pursued for
valuable scientific study, sic and results. (Say, like the placebo effect, while definitely a referenced
value is in itself not a weigh-able quantity, but its affects most definitely are!)

These entities are ubiquitous but there are tipping points in each which makes one (or more) in N
more unique, i.e. a candidate to be studied (or nurtured) for manipulation of desirable outcomes. I n the case of art, that point on the continuum yields a masterpiece; as to love, while everywhere (in degrees) the one ultimate end result is a baby… .

Analogs of the tipping points may also be of the more common or unusual sort, yet unwanted or not relevant - and thus answers why everyone doesn’t get the same, here, metaphorical disease we all
suffer.

 

[Zapped]

I look forward to further notes on this topic

I think you're on to my 'gotcha' post (late night levity)... .
OTOH, ...back to daytime , consider a more serious follow-up, above, re ongoing endeavors to quantify stress. It keeps popping up yet gets treated like an aneuyrism... .

 

[Zapped]

I've tried toning my muscles over the years and I just get PEM and I can't go any further. The muscles don't feel like they can tone up properly.

Likewise, and I've gotten significantly weaker and de-toned.

As a former fitness enthusiast to ward off 'stress' (that term which 'everyone' finds nebulous for now),
I find this scary - the heart is THE large muscle that needs lots of exercise if one is to carry on... .

 

[ScottTriGuy]

PTSD is often described as nearly identical to the ME family of disorders

I have not heard or read that before. (And find it unlikely in my experience).

Do you have some references?

Thanks.