End ME/CFS Severe Patient Study Turns to the Mitochondria

[Rosie26]

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... .

Yes, both ways regarding the heart, as in doing too much and too little.

The lack of 'something' in the muscles, I think, has put my heart and lungs under a lot of strain. Do you feel it at all? I feel it when I hang clothes on the line for instance, it's hard work.

 

[IrisRV]

...my hypothesis that 'stress' is the underpinning cause of CFS/ME as an autoimmune dysfunction...

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.

Maybe I should have asked my question more clearly. I'm not asking for a philosophical essay on stress, interesting as that topic is. I was simply trying to figure out if you are saying psychological stress is the underpinning cause of CFS/ME. If so, I must point out that the vast majority of data does not support the hypothesis that psychological stress is the cause of CCC/ICC ME/CFS. It may be a common cause of the symptom chronic fatigue, but that is an entirely different thing.

If you're saying some kind of stress other than psychological is the cause of ME/CFS, we might have room for some discussion.

 

[Tony L]

My take is that physical stressor(s) act to weaken the body via dysregulation. The stressors could be a combination of genetic factors (perhaps faulty mitochondria or other genotypes which predispose to dysregulation under stress) and chemical/viral agents differing for each individual and this is reflected in the wide range of onset experiences described by sufferers.

We have very fit athletes who are wiped out virtually overnight in what looks like a response to viral attack and then others with a much slower development of chronic disease. With a sudden onset of acute disease resulting from viral illness how could psychological stress/anxiety play a part in onset?

I can see from my own experience of a gradual onset (following many viral illnesses from early age) how anxiety has played, and continues to play a part, I believe, in development of my disease status.

For me, psychological stress comes from suffering from a physical disease which causes my bodily status to be in a continual flux. Either I am either shifting between different states/ sets of symptoms within a day or some days stuck in a set of symptoms which are varying in intensity.

I cannot trust my body to be there for me and this is a cause of underlying stress, as living in a busy family environment, with three children still at home, is a challenge which is probably detrimental to my own health.

I'm trapped in a vicious circle where anxiety is perpetuated by the unpredictability of physical symptoms/necessity to (try to) function in a challenging environment.
Tony

 

[Suziesue]

Interesting stuff! How would one go about getting a metabolomics study here in the UK? Any ideas? Thanks for the articles Cort

 

[Paw]

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

Do you have some references?

Thanks.

I might not have been clear. I was speaking mainly symptomatically. You can easily google all sorts of ways the two overlap, but I've also seen some theories that explicitly say the underlying mechanics of PTSD often seem to function just like in someone with both ME and FM (but I don't have those readings handy).

I'm curious: do you find such theories unlikely based on your own PTSD experience, or on your knowledge that something very different caused your illness? It seems to me that there are many different routes to very similar sets of symptoms.

 

[Paw]

My take is that physical stressor(s) act to weaken the body via dysregulation. The stressors could be a combination of genetic factors (perhaps faulty mitochondria or other genotypes which predispose to dysregulation under stress) and chemical/viral agents differing for each individual and this is reflected in the wide range of onset experiences described by sufferers. We have very fit athletes who are wiped out virtually overnight in what looks like a response to viral attack and then others with a much slower development of chronic disease. With a sudden onset of acute disease resulting from viral illness how could psychological stress/anxiety play a part in onset? I can see from my own experience of a gradual onset (following many viral illnesses from early age) how anxiety has played, and continues to play a part, I believe, in development of my disease status. For me, psychological stress comes from suffering from a physical disease which causes my bodily status to be in a continual flux. Either I am either shifting between different states/ sets of symptoms within a day or some days stuck in a set of symptoms which are varying in intensity. I cannot trust my body to be there for me and this is a cause of underlying stress, as living in a busy family environment, with three children still at home, is a challenge which is probably detrimental to my own health. I'm trapped in a vicious circle where anxiety is perpetuated by the unpredictability of physical symptoms/necessity to (try to) function in a challenging environment.
Tony

This rings true with me too, Tony. I have a hard time drawing clear lines between psychic stress and physiological stress.

I know some forms of our illnesses are probably solely physiological in cause (e.g. from viruses), but I'll bet often it's from a complexity of triggers and predispositions.

In my case, I have no doubt that more than ten years of chronic stress played a huge part, but I think my body was predisposed to "break" from the same sorts of stress that other people would manage. (E.g., was I forced to rely too much on adrenal energy because I wasn't capable of manufacturing enough sustainable energy?)

Some of my long-term lesser symptoms (like IBS, RLS, chemical sensitivity, GERD, etc) pre-date my years of abnormally high stress, which is more evidence, I think, that I was predisposed to breakage. Maybe I would have gotten fully sick anyway without such high levels of situational stress, but I feel like the stress was a necessary trigger for me.

 

[weyland]

I might not have been clear. I was speaking mainly symptomatically. You can easily google all sorts of ways the two overlap

Symptomatically I don't see much overlap between ME and PTSD. You can find low NK cell function and other immune abnormalities in both, and also white matter changes, but that doesn't mean that they are related in any way.

 

[IrisRV]

I'm curious: do you find such theories unlikely based on your own PTSD experience, or on your knowledge that something very different caused your illness? It seems to me that there are many different routes to very similar sets of symptoms.

I don't see much overlap in symptoms between ME and PTSD, either.

Do you mean Gulf War Illness instead of PTSD? Dr Klimas who works with both ME/CFS and GWI says (the last I heard) that they are similar endpoints from very different routes and that even though symptoms are similar in many ways, lab results are quite different.

As for psychological stress being at the root of ME -- someone is going to have to explain how the vast majority of the population lives with the same or more stress than we did pre-ME and they don't get ME. If stress is the cause, they should all have ME too.

Could the psychological stress of dealing with a chronic illness exacerbate existing symptoms? Maybe, especially in people prone to such things. That has nothing to do with causality.

 

[Zapped]

Maybe I should have asked my question more clearly. I'm not asking for a philosophical essay on stress, interesting as that topic is. I was simply trying to figure out if you are saying psychological stress is the underpinning cause of CFS/ME. If so, I must point out that the vast majority of data does not support the hypothesis that psychological stress is the cause of CCC/ICC ME/CFS. It may be a common cause of the symptom chronic fatigue, but that is an entirely different thing.

If you're saying some kind of stress other than psychological is the cause of ME/CFS, we might have room for some discussion.

CFS = abbreviated for ease of communications in writing and reference, to include any or all forms including
Fukada,et al, CCC (Dr. Byron Hyde,et al), ME and earlier specific related definitions, but exclusive of other unrelated or undiagnosed similar conditions.

'Vast Majority' as testimonial doesn't fly around this old computer - fallacious tenet of argument, besides being too 'Trumpish.' I'm not trying to win a debate, here, only to offer what in IMO is hidden in plain sight, since our research friends peering through the microscopes have not as yet found our common bug,
or at least not so confirmed.

You seem to agree with a portion of the stress-as-cause hypothesis. Yet you balk when I attempt to expound how a on a 'tipping point' mechanism explains why it MIGHT be the cause of CFS and by
inference explain how it's possible that we don't ALL get the bug. Isn't your rebuttal really a matter of semantics?

To expand, stress is very real and is the cause of untold malaise and sufering - and in many instances only
diagnosed by presumption... . So, you beg the question how does it work, sic in CFS? I can give you scientific references that would fill your bathroom at Southfork. Instead, indulge me by doing a search
here on an earlier post of mine, using 'Black Mamba.' It's a simple real world possibility (as simile), albeit exaggerated a bit for consideration to illustrate how stress can initiate a biochemical process that leads to .... (very real ulcers, heart disease, psychosis etc... )?

A patholgical result from the Mamba experience certainly isn't a philosophical consideration.

Now back to stress and CFS. An application of my earlier (and ongoing) hypothesis is that at some as yet unknown point stress (quantity problem already suggested), an aberration occurs in the mitochondria which in turn gets into the HPA axis... . Unmeasured time elapses and the result of the mito disarray begins to manifest in the first signs of CFS. [See Cort's post p, Headline, in General Discussion, on HPA being the elephant in the room, Mar 20, 2016, and the references therein.]

I don 't know if this gives you any satisfaction but here's some other relevant food for thought
to add to one's constipation, by corollary inference.

On another level, still not philosophical, consider a bottle of 'placebo pills,' innocuous little tick tacs which really don't exist a priori, primarily because of ethics (a pseudo product would be sold under false pretenses). Yet they are widely used in medicine and their results are measured - in every imaginable trial or treatment. Each one, itself is nothing more than a bit of corn starch, flavor and sweetener. However, each one of these nadas is capable of curing any malady that the ingestor of one believes it will heal, likely so advised by some 'professional.'

So, maybe we get the Grand Pubah of all things CFS (Montoya?) to write up an rx script for a cure for CFS
and we can post haste on down to the nearest pharma for a little bottle of Love Potion #9 - cure(s) all!

 

[Paw]

I don't see much overlap in symptoms between ME and PTSD, either.

Do you mean Gulf War Illness instead of PTSD? Dr Klimas who works with both ME/CFS and GWI says (the last I heard) that they are similar endpoints from very different routes and that even though symptoms are similar in many ways, lab results are quite different.

As for psychological stress being at the root of ME -- someone is going to have to explain how the vast majority of the population lives with the same or more stress than we did pre-ME and they don't get ME. If stress is the cause, they should all have ME too.

Could the psychological stress of dealing with a chronic illness exacerbate existing symptoms? Maybe, especially in people prone to such things. That has nothing to do with causality.

No, I was referring to PTSD, but I'm not invested enough in the theory to retrace all my readings (at this point theories are mainly all we have). I just find the comparison resonates interestingly with my own experiences.

But your argument for distancing psychological stress from causation is curious. It would be like arguing against any sort of viral cause, since the same virus doesn't leave everyone debilitated for life.

I'm just a dilettante when it comes to research, but I definitely don't agree with you if you're saying very different causes can't lead to nearly identical symptoms and underlying mechanics. Or that chronic stress can't be a powerful trigger that sends certain people down a path of chronic physiological malfunctioning.

 

[Cort]

My take is that physical stressor(s) act to weaken the body via dysregulation. The stressors could be a combination of genetic factors (perhaps faulty mitochondria or other genotypes which predispose to dysregulation under stress) and chemical/viral agents differing for each individual and this is reflected in the wide range of onset experiences described by sufferers. We have very fit athletes who are wiped out virtually overnight in what looks like a response to viral attack and then others with a much slower development of chronic disease. With a sudden onset of acute disease resulting from viral illness how could psychological stress/anxiety play a part in onset? I can see from my own experience of a gradual onset (following many viral illnesses from early age) how anxiety has played, and continues to play a part, I believe, in development of my disease status. For me, psychological stress comes from suffering from a physical disease which causes my bodily status to be in a continual flux. Either I am either shifting between different states/ sets of symptoms within a day or some days stuck in a set of symptoms which are varying in intensity. I cannot trust my body to be there for me and this is a cause of underlying stress, as living in a busy family environment, with three children still at home, is a challenge which is probably detrimental to my own health. I'm trapped in a vicious circle where anxiety is perpetuated by the unpredictability of physical symptoms/necessity to (try to) function in a challenging environment.
Tony

Makes sense to me Tony. I didn't have a problem with anxiety prior to ME/CFS but I know some people who did...

My take on this is that yes, there is, of course, increased stress from having an illness like ME/CFS but further than that the stress response system in ME/CFS is dysregulated - so you have the two kinds of stress with ME/CFS/FM: you have the stress of having a chronic illness PLUS you have a disease that causes a dysregulated stress response.

As you say a physical disease that causes your body status to be in continual flux...not just with regard to what you can or can't do but a disease that causes your body physiologically to be in continual flux....for the body to be anxious, unable to settle down, etc.

 

[Cort]

No, I was referring to PTSD, but I'm not invested enough in the theory to retrace all my readings (at this point theories are mainly all we have). I just find the comparison resonates interestingly with my own experiences.

But your argument for distancing psychological stress from causation is curious. It would be like arguing against any sort of viral cause, since the same virus doesn't leave everyone debilitated for life.

I'm just a dilettante when it comes to research, but I definitely don't agree with you if you're saying very different causes can't lead to nearly identical symptoms and underlying mechanics. Or that chronic stress can be a powerful trigger that sends certain people down a path of chronic physiological malfunctioning.

I don't see why chronic stress wouldn't be like an infection or a series of infections - it's just more gradual. I believe both kind of stress activate similar immune pathways...

 

[Paw]

dysregulated stress response

For example, I have fairly sweeping neuropathies (autonomic, small-fiber, peripheral), which my neurologist thinks were responsible for nearly all my long-term symptoms, decades before I got more systemically sick. If, for years, I was chronically under-rested (and suffering from early FM) but forced myself to work overtime and care for my family, I might have screwed up the system that converts glutamate to gaba (and back again). Seems it's one of the current theories of both ALS and Alzheimer's: excitotoxicity can lead to permanent brain lesions...

So I don't think it's far-fetched speculation to say that my idiopathic neuropathy might have been the precondition that left me particularly vulnerable to stress damage, which might not have proved so debilitating had I not been so (psychologically) determined to push through fatigue for so many years.

That said, a recent brain MRI showed no lesions, so who knows?

 

[tatt]

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?

Seen this http://www.ncbi.nlm.nih.gov/pubmed/6812522 ? one to discuss with your doctor.

Also there are suggestions that vitamin D plays a role in sleep - see e.g. http://andrewamarino.com/PDFs/183-SleepMedRev2014.pdf and Dr Gominak's website http://drgominak.com/vitamin-d-hormone.html

Everyone with ME should have vitamin D levels tested and remedy any deficiencies. Might not help but it's inexpensive and is unlikey to do any harm. For uk people tests can be bought here if your gp is uncooperative http://www.betteryou.com

 

[Cort]

For example, I have fairly sweeping neuropathies (autonomic, small-fiber, peripheral), which my neurologist thinks were responsible for nearly all my long-term symptoms, decades before I got more systemically sick. If, for years, I was chronically under-rested (and suffering from early FM) but forced myself to work overtime and care for my family, I might have screwed up the system that converts glutamate to gaba (and back again). Seems it's one of the current theories of both ALS and Alzheimer's: excitotoxicity can lead to permanent brain lesions...

So I don't think it's far-fetched speculation to say that my idiopathic neuropathy might have been the precondition that left me particularly vulnerable to stress damage, which might not have proved so debilitating had I not been so (psychologically) determined to push through fatigue for so many years.

That said, a recent brain MRI showed no lesions, so who knows?

Just wait for the neuro-inflammation studies. Your brain could be full of smaller lesions or inflammation (not sure the difference between the two )

 

[Cort]

@Tony L please edit your post and add paragraphs. Many ME brains cannot handle huge chunks of text.

@Cort if you could edit posts like that when you see them it would help.

I do and I just did Quite an interesting post

My take is that physical stressor(s) act to weaken the body via dysregulation. The stressors could be a combination of genetic factors (perhaps faulty mitochondria or other genotypes which predispose to dysregulation under stress) and chemical/viral agents differing for each individual and this is reflected in the wide range of onset experiences described by sufferers.

We have very fit athletes who are wiped out virtually overnight in what looks like a response to viral attack and then others with a much slower development of chronic disease. With a sudden onset of acute disease resulting from viral illness how could psychological stress/anxiety play a part in onset?

I can see from my own experience of a gradual onset (following many viral illnesses from early age) how anxiety has played, and continues to play a part, I believe, in development of my disease status.

For me, psychological stress comes from suffering from a physical disease which causes my bodily status to be in a continual flux. Either I am either shifting between different states/ sets of symptoms within a day or some days stuck in a set of symptoms which are varying in intensity.

I cannot trust my body to be there for me and this is a cause of underlying stress, as living in a busy family environment, with three children still at home, is a challenge which is probably detrimental to my own health.

I'm trapped in a vicious circle where anxiety is perpetuated by the unpredictability of physical symptoms/necessity to (try to) function in a challenging environment.
Tony

 

[Paw]

Just wait for the neuro-inflammation studies. Your brain could be full of smaller lesions or inflammation (not sure the difference between the two )

Yeah, that'll be interesting. The notes on my MRI said my brain was generally unremarkable for my age. I thought for sure it was much more remarkable than that.

 

[Cort]

Yeah, that'll be interesting. The notes on my MRI said my brain was generally unremarkable for my age. I thought for sure it was much more remarkable than that.

The technology will tell. I think we're in for some good stuff..

 

[Zapped]

So if we don't agree with the "stress as a cause" theory we are then what? Narrow minded and ignorant as Donald Trump?


I told you in a prior post I would no longer comment to you when you re-construed another post of mine without your understanding it - shame on you… . However, here you go again, following me around and interpreting a post of mine adding your own twisted erroneous conclusions, to satisfy your own agenda.
If I let this go uncorrected then shame on me!

So if we don't agree with the "stress as a cause" theory we are then what? Narrow minded and ignorant as Donald Trump?
These are your words and mis-conclusions NOT MINE to otherwise clear diction.
I’ll help you along and show you where you twisted the meaning and clarify it for you

First, ‘vast majority’ can not be used as a reference or testimonial for the reason given.
There is no way that one can tap into what the ‘vast majority’ thinks about X; and it can not
be referenced as a source of backing an argument - who comprises the ‘vast majority?’

Second, the tongue-in-cheek comment using ‘Trumpism’ is a reference to the style of Trump’s
ongoing use similar bogus arguments, eg ’everyone knows’, which the media is daily highlighting on TV.
(There is no way any person can know what ‘everyone knows’ unless they ask
everyone, which is usually impossible (except in small groups where polling is feasible)).

Third, again these are your words and mis-conceptions NOT MINE to my otherwise clear diction:
Insulting people who don't agree with your "theories" (backed up by what?) is uncalled for.

Where is an insult and against whom? This is a non-sequitur to my writing, which means it does not
follow what is given, i.e. an hypothesis; it is not required to be be formally ‘backed up,’ and Insulting people
is your opinion NOT MINE.

In summary your post is an ad hominem attack, meaning that if you can’t counter the premise then you
attack the person who said it. This is unacceptable in educated circles. You might want to
take some adult education courses related to rational arguments (assuming your are an adult).

BTW, nice moniker in your Avatar… . It goes hand in hand with your critical comments around the forums,
above and earlier. Obvious to me, you are not capable of dealing with much here beyond a high school level.
If you can’t rise up and learn the nature of a heady discussion then you often try to bring the tone or
content down to a level you can understand, using attack-like reasoning devices - again,
as illustrated by the bad attitude projected in your current Avatar and the caption on your
earlier avatar “If I didn’t ask for your opinion, don’t offer it.” Nice step up.

I don't have the time or energy to be correcting any of your further attacks or incorrect assertions.
I will simply copy a portion of this post so others can check it out for themselves. Good luck.

 

[Merida]

There is an important article in Advances in Virology, Vol. 2013, article 738794:, Viruses as Modulators of Mitochondrial Function by SK Anand and SK Tikoo ( Canadian researchers). " Viruses either induce or inhibit various mitochondrial processes in a highly specific manner so that they can replicate and produce progeny."
" Viruses like Herpes Simplex virus 1 deplete the host mitochondria DNA . . . "

I would sure hope that the ME/ CFS researchers would call in some of these experts.