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

[JaimeS]

All good, but keep in mind that not all cytokines are inflammatory, hence the fact you see these words associated: "inflammatory cytokines". It's the inflammatory cytokines that are high early and low late, as per Lipkin and Hornig.

Sorry if I'm misinterpreting what you're saying! It's late and been a bit of a long day...

 

[Research 1st]

2016 will be remembered as the year when things began to turn in the right direction for us after decades of horror. I can feel it in my (dysbiotic) gut.

That made me giggle. Not to be party pooper but I'd gently suggest that it'll be at least 2019 before we actually get anywhere, and even then I'd add another year. (2018 is the first, single country, autoimmune CFS conclusion) of which no other country has had the guts to replicate, or even bother considering. So we have one lone country (Norway), and that was mostly funded by private donors. That, is how much Governments care about us.

Remember this is a battle of profit for people getting rich of our denied sufferance. Ignoring us saves trillions of dollars over time, they are used to neglecting us, and humiliating us. with fake news stories, claims of victim-hood and so forth. The 'lived experiences' of our lives, have never been told, few know we even exist, or how we exist.

So the battle lines are drawn:
Good Science vs mentally challenged bean counters and their allied nitwits who control the research funding and the public opinion via news media propaganda (such as in UK) massive saturation of low quality pro-psych journal publications and never letting go of the empire they created.

In comes Dr Navieux and Dr Davis (and hopefully others), Vs this mighty force, an army when we have one white horse, that's weakened but utterly determined to get to the destination - the truth.

The Government allied health system agenda is CFS = cause unknown at all costs + generic fatigue. By ethical Scientists breaching the stalemate (private funded research overtaking agenda's of government funded fatigue research) suddenly making CFS a serious debilitating disease, well their entire house of cards collapses and the fools are no longer us, but them.

Basically, the bad people have to relinquish ideological power away from blaming the patient, to apologizing, accepting they were wrong, and moving forward with their tails between their legs, with a good dab of fake remorse for the cameras. With millions invested each year in 'talking therapies', that have nothing to do with mitochondrial dysfunction, will they do this? No, they will have to be forced to do it, by flawless, reproducible, unquestionably beneficial scientific studies that they refuse to fund.

Producing unquestionable quality studies is the epitome, of what the psych lobby (and their donors) never did, could do, or would want to do, as then their strangle-hold on power is released and equality walks straight in, and we get what other patients do - respect. Hence I think, realistically, we're talking years or decades of seeing infamous people we all know and love....saving face, new retirements, and ultimately slow hand claps until the bad blood is well and truly gone from influence once and for all.

So to be realistic, this will take a long long time, because of who controls the funding, to validate the Science on mass global scale.

 

[Research 1st]

All good, but keep in mind that not all cytokines are inflammatory, hence the fact you see these words associated: "inflammatory cytokines". It's the inflammatory cytokines that are high early and low late, as per Lipkin and Hornig.

Sorry if I'm misinterpreting what you're saying! It's late and been a bit of a long day...

You're not wrong, we're both correct and you're only trying to help, so it's all love. .

Cytokines aren't low late in us per se, they are low late in a criteria that excludes diseases that cause fatigue (They excluded diagnoses of disease that cause fatigue). This is why their Cytokine study doesn't represent all of us, it represents a subset, just as I represent a subset too.

My Cytokines are sky high,(Cytokine Storm) And on repeat years later. And on repeat year later.

But I'm housebound, and their patients aren't. And I got first symptoms before I was 10 and I hazard a bet their patients didn't on average. And that's the difference between filtering out severely affected vs not severely affected who can attend clinics. Also I am slow onset, which in my view, is a different illness to sudden onset.

Many different illnesses (or subsets) all given the same label, using no test, is a disaster. Unless, (we hope) the Metabolic testing can show what's the same, now that's the ray of sunshine piercing through the disorientating fog.

 

[JaimeS]

Basically, the bad people have to relinquish ideological power away from blaming the patient, to apologizing, accepting they were wrong, and moving forward with their tails between their legs, with a good dab of fake remorse for the cameras. With millions invested each year in 'talking therapies', that have nothing to do with mitochondrial dysfunction, will they do this? No, they will have to be forced to do it, by flawless, reproducible, unquestionably beneficial scientific studies that they refuse to fund.

My Cytokines are sky high,(Cytokine Storm) And on repeat years later. And on repeat year later.

But I'm housebound, and their patients aren't. And I got first symptoms before I was 10 and I hazard a bet their patients didn't on average. And that's the difference between filtering out severely affected vs not severely affected who can attend clinics. Also I am slow onset, which in my view, is a different illness to sudden onset.

Many different illnesses (or subsets) all given the same label, using no test, is a disaster. Unless, (we hope) the Metabolic testing can show what's the same, now that's the ray of sunshine piercing through the disorientating fog.

Sorry to say 'fascinating' but.... fascinating.

I suspect long-term is more generally immune-exhaustion. I have, once or twice, had a few flashes where my immune system revved up again suddenly, despite 'generally' and 'typically' being a later-stage patient.

THESE WERE NOT FUN. Cytokine storm is probably accurate.

Ever had your internal temperature go from 96.X --> 103.X in 15 min?

 

[rosie26]

Just thinking about how sensitive some of us are to tablets. I was and still are scared to try a lot of things because of the over reactions I have experienced. These metabolic problems we seem likely to have would be causing this I guess? Would we be over or under metabolizing the tablets?

 

[alex3619]

I suspect long-term is more generally immune-exhaustion.

Let me make a different speculation. The immune system is the last thing to go into a dauer state, and when it does it looks exhausted.

 

[Tuha]

What do you thin of taking statins. I think many patients have problems with their lipid profile (I read somewhere that especially with triglycerides) so that´s why the doctors prescribe statins. But here I read that statins are not good for mitochondria. But what now? The doctors say that thre is a greater risk of heart attack (infarkt).
But is not not somehow that in our case that lipid profil is normal and we dont need to take statins? My doctor prescribed me also statins but I dont take it

 

[Kati]

What do you thin of taking statins. I think many patients have problems with their lipid profile (I read somewhere that especially with triglycerides) so that´s why the doctors prescribe statins. But here I read that statins are not good for mitochondria. But what now? The doctors say that thre is a greater risk of heart attack (infarkt).
But is not not somehow that in our case that lipid profil is normal and we dont need to take statins? My doctor prescribed me also statins but I dont take it

Funny as it is, HIV pts do not have a normal lipid profile. I wonder if @Rose49 can ask her husband the question?

 

[Valentijn]

What do you thin of taking statins. I think many patients have problems with their lipid profile (I read somewhere that especially with triglycerides) so that´s why the doctors prescribe statins. But here I read that statins are not good for mitochondria. But what now? The doctors say that thre is a greater risk of heart attack (infarkt).

There are non-statin alternatives for lowering cholesterol. One is niacin, vitamin B3.

A really daft nurse tried to prescribe a statin to me, after I came down with ME. That was despite my cholesterol levels being barely above normal (not even in the risk category), and having dropped since labs being run several months earlier during onset. I think a lot of practitioners really have no idea of the damage statins can do, and pharmaceutical companies have been heavily pushing them.

 

[Forbin]

It seems like it takes persistent "environmental stress" to get into the hypometabolic dauer-state, yet you remain in that state even after the environmental stress passes (like, say, after an infection resolves). So, why are you stuck in that state? Is the "off" switch broken?

Perhaps. But what if the stressing consequence of trying to remain active in the hypometabolic state then becomes the "environmental stress" that perpetuates that very same hypometabolic state? In other words, it becomes a loop.

Metaphorically, the thing with "hibernation" is that you hibernate. You don't strive to continue functioning. Perhaps if you did, you'd forever function poorly because you might never be able to come fully out of hibernation.

Just a thought, but it might explain Dr. Melvin Ramsay's observation that:

The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.

http://www.name-us.org/defintionspages/deframsay.htm

[ I just realized that I may have appropriated this idea from @alex3619 ! ]

I keep thinking about this question - if you could wake a hibernating bear, and keep it awake, but the hibernation process did not stop, how would it feel?

 

[mermaid]

There are non-statin alternatives for lowering cholesterol. One is niacin, vitamin B3.

A really daft nurse tried to prescribe a statin to me, after I came down with ME. That was despite my cholesterol levels being barely above normal (not even in the risk category), and having dropped since labs being run several months earlier during onset. I think a lot of practitioners really have no idea of the damage statins can do, and pharmaceutical companies have been heavily pushing them.

I have a friend who believes that he developed ME from being given statins and though he has recovered from all the other symptoms, (has taken him many years to do so and a lot of research), the mitochondrial damage he believes is permanent, and he cannot recover from that. His symptoms came on just a few months after starting use of statins.

 

[Countrygirl]

There are non-statin alternatives for lowering cholesterol. One is niacin, vitamin B3.

A really daft nurse tried to prescribe a statin to me, after I came down with ME. .

And a really daft doctor did prescribe me a statin.............and I was daft enough to take it. (Well, I do have very high cholesterol...................apparently that makes me an oddity in the ME world ........(family genes possibly). They are a disaster.................the statins not the genes...........ah, on second thoughts...........! Anyway, I crashed badly and ended up in bed with a three month relapse. Interestingly, the sensation that the statin induced in my muscles.........a sort of sensation that my cells are gasping for air ............... was exactly the same as when I have overdone it and am about to 'crash'. Statins are a complete nono for anyone with ME. I reported it to my doctor, but I doubt he believed that statins could have such an impact. He was of the ilk like the three monkeys. See no ME, hear no ME and speak no ME. It doesn't exist. Silly devil.

 

[Countrygirl]

It seems like it takes persistent "environmental stress" to get into the hypometabolic dauer-state, yet you remain in that state even after the environmental stress passes (like, say, after an infection resolves). So, why are you stuck in that state? Is the "off" switch broken?

Perhaps. But what if the stressing consequences of trying to remain active in the hypometabolic state then become the "environmental stresses" that perpetuates that very same hypometabolic state? In other words, it becomes a loop.

Metaphorically, the thing with "hibernation" is that you hibernate. You don't strive to continue functioning. Perhaps if you did, you'd forever function poorly because you might never be able to come fully out of hibernation.

Just a thought, but it might explain Dr. Melvin Ramsay's observation that:



[ I just realized that I may have appropriated this idea from @alex3619 ! ]

This reminds me of the words of the diagnosing doctor back in 1986 when I was shipped into a nursing home with ME. He said because......under the instruction of my GP.................I had kept working and tried to ignore what my body was telling me.........that I would never recover. He said only those who rested from the beginning would stand a chance of recovery. Wise words! Too late for many of us........especially those who have had their chances of recovery ruined by the influence of White, Wessely and co..............and did I forget to mention the latest generation of children under Dr EC's influence who are about to become the next set of victims and have their chances of remission/recovery ruined or at least compromised?

 

[Forbin]

I had kept working and tried to ignore what my body was telling me

Yeah. I came down with a nasty virus, but foolishly retuned to work after only a few days. About 10 days later I was hit with ME, even though I thought the infection had cleared. Maybe it just went subclinical instead and became the "persistent environmental stressor" that launched ME. I warn people all the time to take the flu seriously and not to try to return to work until they feel fully well. How many people actually do that, though?

 

[natasa778]

3) Pathway analysis shows 5 independent irregularities for male, six for female, and nine shared. The pathways involved are primarily forms of lipid metabolism (sphingolipid, glycosphingolipid, phospholipid and cholesterol metabolic pathways). Other key results involve low levels of FAD (M + F), purines (M + F), and vitamin B12 (Female only).

Apologies if this has been discussed before - having a hard time following and remembering discussion spread over 2 threads and 40 pages , not to mention various linked articles and q&a's - but didn't someone ( @JaimeS ?) post the cohort severity table, showing males and females were mostly belonging to different groups?

In other words could the difference in metabolites found in males vs females be down to different severity levels of study recruits, and not gender-related? Has that been ruled out?

 

[trishrhymes]

'In other words could the difference in metabolites found in males vs females be down to different severity levels of study recruits, and not gender-related? Has that been ruled out?'

I've just looked at the paper, and the severity range was the same for males and females, both ranged from 30 to 90.

The average was 62 for males and 54 for females, but I wouldn't read too much into that, given that, for example, when I tried to decide what my severity level was by looking at the descriptors, I couldn't decide between 50 and 60, or even 40 or less on a bad day!

I don't think this small difference between the averages for males and females is significant. It was clearly useful having a wide range of severity in both genders, as they were able to show that the metabolomic abnormalities were higher in more severely affected people, and could thus be used as an objective measure of severity.

 

[msf]

Funny as it is, HIV pts do not have a normal lipid profile. I wonder if @Rose49 can ask her husband the question?

I think this may prove to be a very illuminating observation.

 

[ScottTriGuy]

Kati said: ↑
Funny as it is, HIV pts do not have a normal lipid profile. I wonder if @@Rose49 can ask her husband the question?

I think this may prove to be a very illuminating observation.

Pardon my fog, but how would this be illuminating?

 

[msf]

Kati said: ↑
Funny as it is, HIV pts do not have a normal lipid profile. I wonder if @@Rose49 can ask her husband the question?



Pardon my fog, but how would this be illuminating?

Well, if they do have similar lipid profiles, they might result from the same proximate cause: not HIV, but rather the translocation of gut bacteria seen in both diseases.

 

[JaimeS]

Just thinking about how sensitive some of us are to tablets. I was and still are scared to try a lot of things because of the over reactions I have experienced. These metabolic problems we seem likely to have would be causing this I guess? Would we be over or under metabolizing the tablets?

It's possible that this isn't directly related to how we metabolize pills, but that our bodies have gotten used to very low levels of different metabolites. Our receptors have shot up in sensitivity over time, which is what happens to anyone who has 'low' anything over time. Now, one little particle of adrenaline settling into a receptor shoots us into the stratosphere.

When we take a normal amount of a drug, to our hypersensitive cells, the effect is amplified many times over.

If you'll allow me a metaphor: a plant hasn't been watered in weeks. You pour a gallon of water over it, it doesn't perk up, it dies. Too much, too soon.

But what if the stressing consequence of trying to remain active in the hypometabolic state then becomes the "environmental stress" that perpetuates that very same hypometabolic state?

I think this may prove to be a very illuminating observation.

Re: HIV. The more I learn about HIV, the more similarities I see between the two. (Important differences as well.) I'm beginning to see why researchers like Klimas study both, and why clinically, both me and my mother were frequently told, "okay, this is going to be hard to hear, but I think you might have HIV."

My mother must've been tested six or seven times, because anytime she saw a new doctor they just assumed she was in the early phases, and that's why she hadn't tested positive previously.