Different Perspectives on Fibro

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In the case of pathogens may have initially caused the condition, in regards to detection, this is the realm of TCM diagnosis. As to what pathogens it can vary from my experience, Ross river, flu, etc.
I don't quite grasp the first bit. Does TCM explain "fibro" as always being caused by pathogens and does it provide the means to detect it?
I'm a bit skeptical altogether if it can be possible to equate what Western experts are trying to define as fibromyalgia with what TCM is referring to. In the West alone, the fibromyalgia defined with the 1990 ACR criteria using tender points is quite a bit different to that defined by the 2016 ACR criteria or the 2019 AAPM criteria, making it hard to compare older studies with younger ones. A significant difference is for instance in the now much higher amount of men diagnosed. I wonder what TCM would say about the men women ratio....

Well it's not impossible that swine flu kicked off my first flares, and some flu 3 years ago kicked off that full flare I'm still in. And I know others have a story like this, it's in studies too, but the probabilities that it is involved seems to be I think it was 20%, and involvement doesn't prove causation, so that doesn't make me believe this was the cause, even in my case...
Hmm not too sure what you mean about leaky gut question? You mean you have it or something about it your curious about?
I was trying to understand what you mean by "rebalancing the microbiome" and wondering if it's leaky gut you mean, as you mentioned that in a previous post.
I don't think I have it, after my curiosity made me read about it quite a bit, and treatment of my gut in that direction seemed worthless.
Sure I can be more careful how I word things..🙂
That'd be great to help me understand.
8 main causes/types is something I wouldn't disagree with. But is the 99% being pathogens still relevant to all these 8, in TCM thought, or only one of these, or are they 8 types of pathogens?
 
I guess you then see the mainstream cause attributions like CSS as effects of that, not really the cause?
And how do you detect these pathogens, I assume not by proven analytical methods?
Could you give examples of pathogens you mean?

Is this more than just a chain of guesses? - First the pathogens, then them being biofilmed as Trojan horses, then fibro as - primarily - an immune system disease? I've got no problems with trying alternative treatments, but I still believe it's safer to know more that we "don't know", rather than making guesses or chains of guesses. (I know even scientists like making chains of guesses, cos it makes for a nice story.... But when you then multiply probabilities you get to approach 0% probability. If each of these 3 links in the chain have a probability of 20%, which I think is high considering there is no proof, then 20% of 20% of 20% is less than 1% probability for it to be right...)

Back to the leaky gut hypothesis? Probiotics (and prebiotics), bitter impulses, that kind of thing...?

(I remember taking Symbioflor 1 for 7 months according to the protocol of naturopathic internistic doctor without the least gut improvement 25 years ago and him saying: well, then you'll have to take it for a year. Instead I started an elimination diet and got considerable improvements inside of weeks. Knowing and eliminating all my many triggers makes my gut appear healthy now, without any meds for it, but of course that's far from a perfect solution: difficult and can cause deficiencies. But I can't imagine these hypotheses working for me any more.)
I just realised this is all a bit of a leap and too much of a jump coming straight out of the blue. If I heard this 10 years ago I would have felt the same. I mean I get it who am I..?

My mistake, I'm just passionate about helping people as I suffered from it. From now on I'll stop being so provocative and I'll just lay back and see what else I can learn from you guys in this thread and the other threads.

🙏🙂✌️
 
Oh all good, for some reason I couldn't see the rest of your post the first time.
Sorry, I'm editing all the time.
But best I go to bed now and stop editing..., that's the best thing I can now do for my health! 🛌 😁
 
I don't quite grasp the first bit. Does TCM explain "fibro" as always being caused by pathogens and does it provide the means to detect it?
I'm a bit skeptical altogether if it can be possible to equate what Western experts are trying to define as fibromyalgia with what TCM is referring to. In the West alone, the fibromyalgia defined with the 1990 ACR criteria using tender points is quite a bit different to that defined by the 2016 ACR criteria or the 2019 AAPM criteria, making it hard to compare older studies with younger ones. A significant difference is for instance in the now much higher amount of men diagnosed. I wonder what TCM would say about the men women ratio....

Well it's not impossible that swine flu kicked off my first flares, and some flu 3 years ago kicked off that full flare I'm still in. And I know others have a story like this, it's in studies too, but the probabilities that it is involved seems to be I think it was 20%, and involvement doesn't prove causation, so that doesn't make me believe this was the cause, even in my case...

I was trying to understand what you mean by "rebalancing the microbiome" and wondering if it's leaky gut you mean, as you mentioned that in a previous post.
I don't think I have it, after my curiosity made me read about it quite a bit, and treatment of my gut in that direction seemed worthless.

That'd be great to help me understand.
8 main causes/types is something I wouldn't disagree with. But is the 99% being pathogens still relevant to all these 8, in TCM thought, or only one of these, or are they 8 types of pathogens?
Yes correct, for one of the 8 bracket of types. 👌 Sorry doing this on my phone after a busy day. This was in response to the little symptoms I heard based off the info what someone was responding with..

In terms of men to women ratio/translating things from east to west/figuring out the best of both worlds, this is a full time job and where I (personally, my opinion) forsee the future of fibro treatments evolving towards..
 
Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis Ekua W Brenu et al. J Transl Med. 2012.
Epigenetic modifications and glucocorticoid sensitivity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. (de Vega et al. 2017)
Hmm, but that's CFS/ME, not fibro. You're not saying they're the same, are you?
For fibro a changed pro- and anti-inflammatory cytokine profile has a certain relevance, however not NK cells, epigenetic modifications or glucocorticoid sensitivity.
The decrease in immune system is an unproven conjecture (I don't get more infections despite reduced white blood cells) also probably lower in FM than in ME/CFS.
I'm not saying I think fibro has nothing to do with the immune system, just I don't think we know, and far from it being an immune system disease - as of course association is not causation.
Saying fibro can lead to immune system problems is not saying it's caused by it.
MCAS experts believe that fibro may be a part of MCAS, but that co-morbidity is only the case for some people like me, and again that's not a causation. And what MCAS is caused by is just as unclear as fibro.

So maybe it's better to regard these association as guesses and use them if that works. We seem to have no more than guesses / intuition, and guinea pig trialling of anything that might seem to work for us.
 
Hmm, but that's CFS/ME, not fibro. You're not saying they're the same, are you?
For fibro a changed pro- and anti-inflammatory cytokine profile has a certain relevance, however not NK cells, epigenetic modifications or glucocorticoid sensitivity.
The decrease in immune system is an unproven conjecture (I don't get more infections despite reduced white blood cells) also probably lower in FM than in ME/CFS.
I'm not saying I think fibro has nothing to do with the immune system, just I don't think we know, and far from it being an immune system disease - as of course association is not causation.
Saying fibro can lead to immune system problems is not saying it's caused by it.
MCAS experts believe that fibro may be a part of MCAS, but that co-morbidity is only the case for some people like me, and again that's not a causation. And what MCAS is caused by is just as unclear as fibro.

So maybe it's better to regard these association as guesses and use them if that works. We seem to have no more than guesses / intuition, and guinea pig trialling of anything that might seem to work for us.
The answer to your questions depends on the assumptions one has about TCM and the foundations it's built on. For me the answer is very clear yes they are most definitely linked, however not always the case. You are correct in saying correlation does not equal causation, and from the stance of pure western medical condenses this is the correct stance to take given the evidence at hand. However TCM has 1000+ years of clinical history and evidence treating fibro, they had a entire dynasty where they literally focused on diseases just like this. However this is provocative to say in modern times because every exact mechanism must be known in modern pharmacology and the chain of causation as you were saying etc.

At the end of the day, western clinical trials are not there yet, but they will get there soon. So it boils down to whether each person wants to go down a path of treatment once it's fully explained with modern mechanics or they are willing to trust an older modality with a different set of diagnostics already available now that western science can not yet replicate. There's no wrong answer. Only what path each individual chooses for themselves.

In terms of what this picture will look like when all mechanism are understood, systems biology is the answer to this question. Systems biology is also what TCM is. (Just in a different language)
 
Hmm, but that's CFS/ME, not fibro. You're not saying they're the same, are you?
For fibro a changed pro- and anti-inflammatory cytokine profile has a certain relevance, however not NK cells, epigenetic modifications or glucocorticoid sensitivity.
The decrease in immune system is an unproven conjecture (I don't get more infections despite reduced white blood cells) also probably lower in FM than in ME/CFS.
I'm not saying I think fibro has nothing to do with the immune system, just I don't think we know, and far from it being an immune system disease - as of course association is not causation.
Saying fibro can lead to immune system problems is not saying it's caused by it.
MCAS experts believe that fibro may be a part of MCAS, but that co-morbidity is only the case for some people like me, and again that's not a causation. And what MCAS is caused by is just as unclear as fibro.

So maybe it's better to regard these association as guesses and use them if that works. We seem to have no more than guesses / intuition, and guinea pig trialling of anything that might seem to work for us.
Might be getting caught up on this pathogen thing, (which might be my mistake for not clarifying which context I was writing it in and not structuring the sentence correctly) There are many causes, I am in absolute no disagreement here.
 
At the end of the day, western clinical trials are not there yet, but they will get there soon. So it boils down to whether each person wants to go down a path of treatment once it's fully explained with modern mechanics or they are willing to trust an older modality with a different set of diagnostics already available now that western science can not yet replicate. There's no wrong answer. Only what path each individual chooses for themselves.
One of the things I always say to people who are newly diagnosed (you can read my advice post pinned at the top of the General forum section) is if you are inclined to try out a certain thing, then try it out. Assuming, that is, it doesn't involve taking strong narcotic pain medication, which I believe should be a last resort if everything non-medication has been tried and doesn't help enough for the person to function daily. Those medications are fine for occasional use, but are best avoided for every day unless truly necessary.

So, if people want to try out Chinese medicine, they should go for it. It might help, and it might not, but there is no reason I would tell anyone to avoid it.

My experience with Chinese medicine is that it has far too strong an effect, and causes more problems rather than helping, but that is just me. Results will vary.

Whether or not western medicine starts to embrace the techniques or medicines used in Chinese medicine remains to be seen.
Do you know that western clinical trials are being done on traditional Chinese medicines? I'd be interested to know, if you know this for a fact. If you know of studies being done, you can tell us about them just as you have above, by writing the name or what to type into a search engine in order to find the page. Thank you for not posting direct links.

The accepted means of determination in western medicine currently is carefully controlled clinical trials, using many people, and over a period of time, with the results then published in peer-reviewed publications. Once that has happened, it can be taken as true, remembering of course that medicine is science and what is seen as scientific fact today may be proven wrong next year. Science is a fluid thing, constantly changing and adjusting as those in research discover new things, which is as it should be. Even if one thing is proved scientifically to be a cause of fibromyalgia, my bet is that there are other things that could cause it instead, or in addition, in any given individual.

I do not believe that a time will ever come when everything is understood. I see that as being impossible, because the universe is far too vast, and the workings of a being on this planet far too complex for all of it to ever be understood. We will simply find one little thing to add to our knowledge, and then one more little thing, and that will go on perpetually. Personally, I love that because it offers endless things to be studied and so many celebrations when another thing is discovered.

If it comes to telling someone what will help them with fibromyalgia, all caution should be taken and I don't think any one method or medication should be offered as a sure thing. The only exception I see is attitude. A more positive and accepting attitude towards your condition is always helpful, whether you have fibromyalgia or have just lost a leg or have cancer or anything else that cannot just be fixed. This, of course, has been proven and is shown every day. having a good attitude may not change the physical situation one bit, but it will help the individual learn to manage it emotionally, which is always a good thing.
 
However TCM has 1000+ years of clinical history and evidence treating fibro, they had a entire dynasty where they literally focused on diseases just like this.
Again, I believe I'm right in saying it's most important to realize that TCM doesn't have the category 'fibro', so what we call that will have been treated in various ways, personalized according to pulses, tongue etc.
There are many causes, I am in absolute no disagreement here.
That's settled then, brilliant.
At the end of the day, western clinical trials are not there yet, but they will get there soon.
Whether or not western medicine starts to embrace the techniques or medicines used in Chinese medicine remains to be seen.
Do you know that western clinical trials are being done on traditional Chinese medicines? I'd be interested to know, if you know this for a fact. If you know of studies being done, you can tell us about them
The accepted means of determination in western medicine currently is carefully controlled clinical trials, using many people, and over a period of time, with the results then published in peer-reviewed publications.
Well actually, there is a pretty trustworthy source of Chinese medicine being tested in "Western" style clinical trials.
From a seemingly surprising, but obvious and logical overlap!:
Very often when I look on pubmed for herbs and other TCM treatments, I find peer reviewed clinical trials done by Chinese researchers. I see them as just as trustworthy, because they are just as self-critical and tentative with their wording. The often hopeful note recommending further more exact trials is there, but that's the case in all clinical trials & reviews that have vaguely positive results.
My experience with Chinese medicine is that it has far too strong an effect, and causes more problems rather than helping, but that is just me. Results will vary.
I'll keep in mind that that's also your experience, because it's also my experience that's making me wary.

(I thought choosing acupuncture done by a "real" Chinese doctor would be best. And it was at least much better than the previous Westerners with their thinner needles and absolute disregard for my body tenseness/ relaxation/ position. And she does almost nothing else than acupuncture and some cupping, using tongue and pulses. But still the acupuncture did nothing than what Western style analysis proves, it often (but not always) gives me a certain cortisol increasing effect, and naught else, which creates an ("unhealthy") dysbalance that I have learnt to then counteract myself on several different levels.)
Even if one thing is proved scientifically to be a cause of fibromyalgia, my bet is that there are other things that
Fully agreed.
I do not believe that a time will ever come when everything is understood. I see that as being impossible, because the universe is far too vast, and the workings of a being on this planet far too complex for all of it to ever be understood. We will simply find one little thing to add to our knowledge, and then one more little thing, and that will go on perpetually. Personally, I love that because it offers endless things to be studied and so many celebrations when another thing is discovered.
I completely share this attitude, but it needs our radical acceptance, making the best of our situation and always keeping our spirits up to do so. If anyone feels slighted by not feeling able to, I think it's probably best to try to grasp at least a tiny bit of this attitude as an ideal, where each bit is better than nothing. So as an encouragement for self-advocacy, working on ourselves and celebrating each time we find something that helps, motivating to find more... 🕵️‍♂️ 🎉 🏆
 
One of the things I always say to people who are newly diagnosed (you can read my advice post pinned at the top of the General forum section) is if you are inclined to try out a certain thing, then try it out. Assuming, that is, it doesn't involve taking strong narcotic pain medication, which I believe should be a last resort if everything non-medication has been tried and doesn't help enough for the person to function daily. Those medications are fine for occasional use, but are best avoided for every day unless truly necessary.

So, if people want to try out Chinese medicine, they should go for it. It might help, and it might not, but there is no reason I would tell anyone to avoid it.

My experience with Chinese medicine is that it has far too strong an effect, and causes more problems rather than helping, but that is just me. Results will vary.

Agreed.
Whether or not western medicine starts to embrace the techniques or medicines used in Chinese medicine remains to be seen.
Do you know that western clinical trials are being done on traditional Chinese medicines? I'd be interested to know, if you know this for a fact. If you know of studies being done, you can tell us about them just as you have above, by writing the name or what to type into a search engine in order to find the page. Thank you for not posting direct links.

Yep there have been many studies being done and are still being done. I'll link some for you sure.
The accepted means of determination in western medicine currently is carefully controlled clinical trials, using many people, and over a period of time, with the results then published in peer-reviewed publications. Once that has happened, it can be taken as true, remembering of course that medicine is science and what is seen as scientific fact today may be proven wrong next year. Science is a fluid thing, constantly changing and adjusting as those in research discover new things, which is as it should be.
👍My whole family are professors in mathematics and environmental science, and work at top labs in US and Aus. Probably the only reason I didn't take the same path was because when i got fibro, nothing helped and TCM was the only thing that did,(and eventually did all the way - in my case). I was super skeptical about trying it, but had tried everything and this was the last thing left. When it worked I had an intense curiosity to work out what the cognitive dissonance was in the scientific community between TCM and Western, saw merit in becoming both eastern and western doctor, chose TCM because these days it covers western medicine anyway, albeit less, and that was there was more time helping other people straight away. (different discussion) Point is, strongly agree about science.
Even if one thing is proved scientifically to be a cause of fibromyalgia, my bet is that there are other things that could cause it instead, or in addition, in any given individual.
Agreed, this is in line with how TCM categorises the condition, also how myself and other western doctors I know see this and most conditions. (just my experience)
I do not believe that a time will ever come when everything is understood. I see that as being impossible, because the universe is far too vast, and the workings of a being on this planet far too complex for all of it to ever be understood. We will simply find one little thing to add to our knowledge, and then one more little thing, and that will go on perpetually. Personally, I love that because it offers endless things to be studied and so many celebrations when another thing is discovered.

If it comes to telling someone what will help them with fibromyalgia, all caution should be taken and I don't think any one method or medication should be offered as a sure thing. The only exception I see is attitude. A more positive and accepting attitude towards your condition is always helpful, whether you have fibromyalgia or have just lost a leg or have cancer or anything else that cannot just be fixed. This, of course, has been proven and is shown every day. having a good attitude may not change the physical situation one bit, but it will help the individual learn to manage it emotionally, which is always a good thing.
Agreed, no such thing as a sure thing, in my experience the less one identifies with having fibro and the more one can manage to be positive the better it becomes for yourself and everyone else 🙂
 
Again, I believe I'm right in saying it's most important to realize that TCM doesn't have the category 'fibro', so what we call that will have been treated in various ways, personalized according to pulses, tongue etc.
Actually they do have a category for fibro and other very similar conditions. These were most prevalent in the yuan dynasty and there are famous classical books which have been written by a famous TCM doctor from that time. He had to reinvent or change the principles of Chinese medicine because it wasn't working for his time any more. This was due to the mongolian empire taking over and the people having a change of diet which is actually very similar to ours today. (ice cream, pizza, pasta, coffee etc) This and other related lifestyle factors and conditions made that time very similar to ours. That is why often today when modern acus try to treat fibro using the main classics of TCM (correct because how they are trained) they do not recieve as much success as they can. This is because the conditions inside the body are different to when they were say going back 100-200 years. Applying the treatment strategies from the Yuan dynasty generally enable much better results. (Again for some people, not saying at all there is a cure, but your question was on whether they had labelled the disease which they had)
Well actually, there is a pretty trustworthy source of Chinese medicine being tested in "Western" style clinical trials.
From a seemingly surprising, but obvious and logical overlap!:
Very often when I look on pubmed for herbs and other TCM treatments, I find peer reviewed clinical trials done by Chinese researchers. I see them as just as trustworthy, because they are just as self-critical and tentative with their wording. The often hopeful note recommending further more exact trials is there, but that's the case in all clinical trials & reviews that have vaguely positive results.
Yep in fact I would say the majority of RCT show positive effect, and all end with something like: in conclusion TCM acu or herbs etc show good results, provide effective relief and have promise for treating fibro going into the future, but more RCT with stricter criteria need to be carried out to ensure proper results...

I've had to write papers (just for uni at the time) where you discuss and look into all these trials and measure them up against modern standards. Basically it comes down to a few things when they don't measure up to the COHORT or STRICTA criteria or what ever you're using. Some trials are actually not double blinded, so there's bias right there. But taking the rest that are, and there are many. The problem is how do you do sham acu? It's almost impossible because a physical needle needs to be put in the body and people can usually tell the difference when it's not. This is actually mainly it, assuming the trial is set up correctly in all other ways. The thing that I think is always helpful analysing is: how did it compare vs conventional western medication? how were the results when used in combination with western medication, how did it compare with placebo groups with acu and herbs etc? This is actually where most of the time it shows a lot of strength. The problem is this will not be accepted as any protocol not adhering to STRICTA standards etc will never be deemed as valid.

The other reason is if the study doesn't use a protocol of points and instead allows the practitioner to individually diagnose and treat each patient according to what they need, despite their clinical success this is also seen as a fail to guidelines, because this doesn't fall inside the framework of the one sized fits all approach of western medicine.

I do think this will all change soon though.

(I thought choosing acupuncture done by a "real" Chinese doctor would be best. And it was at least much better than the previous Westerners with their thinner needles and absolute disregard for my body tenseness/ relaxation/ position. And she does almost nothing else than acupuncture and some cupping, using tongue and pulses. But still the acupuncture did nothing than what Western style analysis proves, it often (but not always) gives me a certain cortisol increasing effect, and naught else, which creates an ("unhealthy") dysbalance that I have learnt to then counteract myself on several different levels.)
Indeed, having a good practitioner you trust, is compassionate and is competent is extremley important, sometimes it can be night or day. (I guess this is the same for most things)

Interesting about the cortisol imbalance and you correcting it. How you do that?

Fully agreed.

I completely share this attitude, but it needs our radical acceptance, making the best of our situation and always keeping our spirits up to do so. If anyone feels slighted by not feeling able to, I think it's probably best to try to grasp at least a tiny bit of this attitude as an ideal, where each bit is better than nothing. So as an encouragement for self-advocacy, working on ourselves and celebrating each time we find something that helps, motivating to find more... 🕵️‍♂️ 🎉 🏆
I agree, I find most people I meet who have the condition and working on it are some of the nicest, most kind hearted people you will meet.
 
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