Given the mobility of Californians in particular, I wouldn't make too much of where the patients are "from"...their current address may have little relationship to where they lived when they got sick. I'm just 65 miles from Dr. Gordon's practice, and have been for nearly 25 years, but I first got sick in the mountain foothills outside of San Diego.
Naviaux et. al.: Metabolic features of chronic fatigue syndrome
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JaimeS
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Absolutely @Kati -- the philosophy of etiology isn't something I'd thought of directly like that. Now we've identified at least three reasons why this must be done utilizing patients from multiple centres / diagnosing physicians!
valentinelynx
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Hmm. My recovery back in 1997, after 4 years of illness, was switch-like. One day I sat up in bed, and noted to self, "I just sat up like it was nothing!" That recovery was about 85% and allowed some exercise - mainly it allowed me to complete medical training without taking more time off (I had been taking a few months break between each rotation during medical school). That included internship, with some 110 hour weeks - I was in the last group of residents in the US to not have the 80 hour a week work limitation imposed on them.
Come to think of it, my illness onset was very switch-like: I was on a small hike with friends near our house (tick infested woods in Portola Valley, CA), when I suddenly felt like I weighed a thousand pounds and wanted to lie down immediately. Prior to that moment, I was completely well and in excellent physical condition.
My relapse, acknowledged (by me) in 2009, was more gradual. It probably started during my fellowship (2006-2007) but it was only when I tried to start a full-time job that I had to face the fact that I wasn't going to make it pushing at that level. I'd been able to take 3 miles walk/hikes in the mountains of Utah before moving to Tucson, but that was all I could do (sleep most of day, get up, walk in evening, eat dinner, go to bed). After moving to Tucson, things just gradually got worse. I'm sure I damaged myself by pushing, pushing to exercise, pushing to work. Pretending everything was OK. Kind of like I did in the very beginning - after 3 weeks of a "flu" that didn't get better, I decided to ignore it.
If only, if only, I had curled up in a ball and done nothing for a year or so - like Sue Blackmore did. Or, maybe found a doctor by some miracle and gotten some gamma globulin back then!
valentinelynx
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True - I got sick in Portola Valley (foothills just NW of Palo Alto, California, but now live in Tucson, AZ. Also, most "coastal" Californians don't interact much with the ocean (re: your thoughts on water contamination), unless they are lucky enough to live in Santa Cruz, Monterey, Santa Barbara or some such lovely town. I grew up in the San Francisco Bay Area, and very rarely got to a beach or even near the bay.
One of the Australians who won a Nobel prize for medicine is a vet.
https://en.wikipedia.org/wiki/Peter_C._Doherty
Interesting, isn’t it? My initial onset (viral meningitis) was like an on-off switch too, as was my relapse. For each I can give the date and time when I went from completely normal to extremely unwell "I have to lie down right now". I’m totally up for an on-off switch remission. (Ya hear that, universe?)
But biochemically, or pathphysiologically, or metabolically, I suspect there’s a lot going on behind the scenes to set up one of these on-off onsets or remissions. I think of it like a tipping point a la Malcolm Gladwell. Or that game ker-plunk. Sometimes a lot of marbles balance on very few straws. I feel like I’ve set up an impenetrable lattice of straws but the darn marbles keep crashing down.
Like you, I wish I’d lain (? am aiming for past tense of lie) down and stayed down, but they were all very reasonable decisions at the time. The problem is that it can take a few years to get hooked into the good info, by which time you’ve snookered yourself.
When I watch a documentary on ME/CFS or hear anyone on TV who has it but obviously doesn’t know it yet, I find myself going “Lie down! Please lie down! Do less. Now less again. Now less again. Yep, less again.”
Having said all that, I think we have to be careful about taking too much of the blame/responsibility for the course of our disease. Some people would do the exact same as you or I did, and make beaming full recoveries. Others would do one 110 hour week or just one morning at work and plunge immediately into bedbound status. (I wasn’t doing 110 hour weeks. Tiny weeks were enough to finish me off.) When we understand more about the pathophysiology of ME/CFS and our individual biochemical/metabolic quirks, I think we may be able to plan better. But in the meantime, as a rule of thumb, I reckon, if in doubt, lie down.
Here’s to effective treatments and remissions for everyone in the audience.
I think this tendency is probably more pronounced in the US, simply because there is more choice. If for instance, you don´t suspect Lyme but rather EBV as the cause of your illness, you can see Montoya or Peterson in the US; in Europe, on the other hand, you can see...
I subscribed to the herpes viruses cause ME idea when I went to see KDM.
Splendidly correct use of the past participle in the past perfect tense. Just because we have ME doesn't mean linguistic standards have to slip. Admirable.
And yes to everything else.
Ha ha, thank you! I'm on a mission to let all standards slip, though, so you may have to avert your eyes at times. By the way as a former German scholar I enjoyed your comments on "Es dauert ewig". This study has produced a whole lot more comedy than most. Am too wrecked to get into the science bit so am just enjoying the comedy. Dauer is so much more fun when shared with other witty nematodes/bears.
I think @anciendaze gets the credit for that, and before that @Valentijn explained it rather well. I like "endurance".
Yep, thinking "I'll just be late" or "it just won't get done" takes some getting used to, but it's what we have to do.
Here's an easy way to remember the pronunciation and translation of dauer:
Dauer Power - We Endure
Love the super-nematode! And thank you for crediting the right people and my apologies to the right people - that is an example of me letting standards slip, not going back to see who said what. Kinda proud of myself but sorry for misattribution of German wit.
Yes @TiredSam, it was this comment by @anciendaze that made me laugh, the job that puts up an epic resistance to completion, thanks @anciendaze. ME/CFS seems to be a case of putting up epic resistance to exiting Dauer.
Undisclosed
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Please note, this thread is about the research paper by Naviaux et all: Metabolic features of chronic fatigue syndrome.
One new thread has already been created from posts that were off-topic to the study itself re: treatment options for ME/CFS.
We have had a few complaints related to members discussing personal treatment, treatment history, and other random topics on this thread rather than the study itself. It would be helpful to us and mindful of members if you would start a new thread to discuss issues unrelated to the study itself -- i.e.; the metabolic features of chronic fatigue syndrome.
Thank you.
One new thread has already been created from posts that were off-topic to the study itself re: treatment options for ME/CFS.
We have had a few complaints related to members discussing personal treatment, treatment history, and other random topics on this thread rather than the study itself. It would be helpful to us and mindful of members if you would start a new thread to discuss issues unrelated to the study itself -- i.e.; the metabolic features of chronic fatigue syndrome.
Thank you.
Simon
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Wasn't me complaining, but I think this is an issue with most threads - and it's understandable why people do want to talk about how research might relate to their own symptoms and condition. In a way, we almost need an automatic symptom/treatment thread started in paralllel with every "latest research" thread.
Not a serious suggestion
, I'm can't imagine it would be practical - I'm just musing here.
frederic83
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How much are they charging?
I’m interested in how the findings of hypometabolism in this Naviaux et al study might tie in with the studies by Hornig and others in 2015 which I believe suggested upregulation of parts of the immune system in the first 3-ish years of the disease, followed by downregulation of those same parts of the immune system in longer duration disease, which Hornig described as “immune exhaustion” in longer duration patients. The Naviaux metabolomics study is on longer duration patients (mean duration of illness of male patients was 21 years, 17 years for female patients, and range of duration of illness began at 3 years for males and 2 years for females). I’d be interested to see what a metabolic study of ME/CFS patients in the first 3 years of illness would show.
Would we see a more infection-like acute cell danger response in the first 3 years of illness, switching to a hypometabolic response thereafter? Or was the response to the infection/other trigger atypical to begin with, i.e. was a standard acute CDR response just never triggered and instead we went straight into hypometabolic state? If people with ME/CFS go straight into a hypometabolic state, then in theory these people could be identified early (potentially really early in infectious onset, before they even look different from those recovering normally from the triggering infection) and appropriate advice given to try to prevent long-term disease (rest, nutrition etc).
Would love to hear people’s views on this or be directed to the answers if we already have them. Perhaps Hanson’s findings or those of the Australian team speak to this – I have not yet been able to catch up on them due to Dauer.
Would we see a more infection-like acute cell danger response in the first 3 years of illness, switching to a hypometabolic response thereafter? Or was the response to the infection/other trigger atypical to begin with, i.e. was a standard acute CDR response just never triggered and instead we went straight into hypometabolic state? If people with ME/CFS go straight into a hypometabolic state, then in theory these people could be identified early (potentially really early in infectious onset, before they even look different from those recovering normally from the triggering infection) and appropriate advice given to try to prevent long-term disease (rest, nutrition etc).
Would love to hear people’s views on this or be directed to the answers if we already have them. Perhaps Hanson’s findings or those of the Australian team speak to this – I have not yet been able to catch up on them due to Dauer.
frederic83
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That's a good question: when CFS suddenly happens, is it directly a hypometabolic state? Or is there a progressions?
When CFS is progressive, do we have a shift from CDR to dauer? In that case, how long a CDR can last before dauer occurs? That CDR testing could be a good test to detect in advance a coming CFS.
I guess the genes and the potential infections also play a part.
adreno
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I would think that PWME start with an acute CDR response and then switch into hypometabolism at some point, but it would surely be interesting to have this examined further.
Sing
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The 3 year mark for this shift in cytokines or immune markers is probably just an average. I bet that some people went quickly into dauer and others held out longer in battle mode, the initial form of CDR. Maybe this would have to do with how many other infections or hard challenges that body had already had, plus any genetic susceptibility. Was this last infection the straw that broke the camel's back?--in which case the person might go into dauer fast. Or was the bad infection or initiating event, as in the instance of Dr. Davis's son, just a really severe infection, perhaps from a foreign environment that one's body had no experience with, and the body fought it hard in the first kind of CDR as long as it was able?
Through travel and the movement of people around the globe, our bodies are exposed to pathogens they haven't had any experience fighting. Some of the terribly toxic chemicals we can be exposed to might have the same effect. The body says, "What the hell is this!" What do I do now? Are we going to die or can we possibly escape by battening down all the hatches?-- or if you prefer another analogy, by fleeing into the caves and tunnels back in the hills? Is the only way we can survive by retreating into the Sierra Madre like the Lost Tribe of the Apaches?
I actually can appreciate how smart this last ditch strategy is from the point of view of our embattled cells, the very units of life. From our point of view, on the human scale, nothing is happening in our lives except we are lying down all day in a semi-vegetable state, but from the point of view of our cells, they are protecting our lives by sending us into a "sleeping beauty sleep", from which some day, a determined and heroic rescuer will arrive.
I am putting my money on Dr. Naviaux, Dr. Davis and their colleagues to continue on with these breakthrough studies. Let's help them get through the high and nearly impenetrable hedge of thorns which has grown up around the castle, and challenge the forgetfulness that has come to the rest of the world about those of us whose lives have endured through a long century of suspended animation.
Through travel and the movement of people around the globe, our bodies are exposed to pathogens they haven't had any experience fighting. Some of the terribly toxic chemicals we can be exposed to might have the same effect. The body says, "What the hell is this!" What do I do now? Are we going to die or can we possibly escape by battening down all the hatches?-- or if you prefer another analogy, by fleeing into the caves and tunnels back in the hills? Is the only way we can survive by retreating into the Sierra Madre like the Lost Tribe of the Apaches?
I actually can appreciate how smart this last ditch strategy is from the point of view of our embattled cells, the very units of life. From our point of view, on the human scale, nothing is happening in our lives except we are lying down all day in a semi-vegetable state, but from the point of view of our cells, they are protecting our lives by sending us into a "sleeping beauty sleep", from which some day, a determined and heroic rescuer will arrive.
I am putting my money on Dr. Naviaux, Dr. Davis and their colleagues to continue on with these breakthrough studies. Let's help them get through the high and nearly impenetrable hedge of thorns which has grown up around the castle, and challenge the forgetfulness that has come to the rest of the world about those of us whose lives have endured through a long century of suspended animation.
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ghosalb
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Does 75% unique abnormality mean genetic pre-disposition more important than other factors ? Even healthy people have to slow down to get out of a flue.....but in our case, because of genetic issues, we need to slow down completely....otherwise our body forces it on us. And if we don't behave during probation, we are put into our own prison.