Chronic Fatigue Syndrome (ME/CFS) May Be Caused By Increased Serotonin Sensitivity

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Sep 26, 2018
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56
Protodioscin isn’t aromatizable or non-aromatizable, it’s not a hormone, it’s a saponin.
I’ve read virtually all studies on all herbs you can think of
Think in context man... Nobody says it's a Hormone, just that it is a DHEA analog (look at the molecule structure). Saying "non-aromatizable" is just a metaphore to say that it has very similar properties than DHEA but without the risk of getting converted to estrogen. So, yes, let's move on...
 

Wendy B

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Joined
Jul 16, 2019
Messages
81
I know of 4 that were not able to do much except lie in bed all day (not even watch TV). All of those people are now employed and have active social lives. Two of them (one female and one male) started families (not with each other).
That's fantastic! What exactly did they take?
 

Momentum

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Joined
Dec 9, 2019
Messages
172
I've just finished reading this whole thread (looking for suramin info) and some of you are definitely onto what the research is proving, and some of you are way off. Sadly, I should've taken notes while going through. I'll be condensing information (of research) over the next few months, but for now.
ME/cfs (please let's lose the CFS term) is for sure not high estrogen. My God, if it were teen and young woman would be the main group falling, not women in their 40's and up - who's E is falling.
Undiagnosed low thyroid is NOT causing ME, but probably the majority of people with ME have subclinical hypoT and would benefit with treatment. The cause can be many things, one even being Empty Sella Syndrome.
Exercise is clinically proven (in blood, heart, brain scans and more) to be HARMFUL, not helpful, in ME - even graded exercise. (The authors of PACE are narcissistic, ego-maniacs. Their science has been disputed many times.)
Deconditioning is also not at all the situation, as many fall ill at the peak of their health
The recent research is clear ME/cfs is not psychosomatic, it is not one virus, one gene mutation or one auto-immune illness. It is a complex disease of multiple failures, mostly likely caused by a predisposition and triggered by..........a host of things.

This is a great channel. Look for the last year, and the videos that the thumbnail has a mint green background. A very good one by Dr. Jarred Young on neuro-inflammation. SolveCFS

This channel, especially the conferences posted 5 and 8 months ago: Open Medicine Foundation - OMF

This is a 29 video playlist (harder to track on a smart t.v.). It is also presenters at an NIH conference. Some are more tech, some are more guarded, IDK, it's just different, but still very good info - many of the same players worth getting to know.


This channel is by a very well known ME doc, Lucinda Bateman, I've watched several of her presentations on other channels. I see they just posted two videos which sound controversial, I haven't seen them. Bateman Horne Center

ME/cfs has been greatly ignored since 1992 when two British psychiatrist wrote a paper stating it was psychosomatic. This was not only a massively poorly done study, even for its time, but as we know it has made it very difficult to gain research and credible traction sadly not only ruining the lives of millions of people, but also their families. Serious research re-started about 5 years ago, largely privately funded. I believe the private funding is exactly why they are making good headway (and great new tech). What I'm worried about is that they are getting closer to getting more NIH funding which will lead to pharma funding and there goes not only collaboration, but honest studies.

Interesting note, some of these researchers are studying Gulf War Syndrome side by side with ME. The symptoms are largely the same. The biology is amazingly similar in about 75% of areas, and distinctly different in about 25% of areas.

What the researchers haven't seemed to connect is a possible link between connective tissue disorders and ME, even though it (collagen mutations) appear in some of their research. And the hEDS researchers aren't, to my knowledge, collaborating with the ME researchers. EDS research is also largely privately funded; but both British and US agencies are pulling out of the EDS arena, the Brits are pushing it more to the pain being psychosomatic. I believe they have calculated the cost of rising awareness, and a dramatic increase in possible hEDS diagnosis could be on the horizon - and that will be expensive. And finally, Fibro (which most scientist differentiate from ME) is diagnosed 4x more than ME and has NIH funding is being pushed more and more as psychosomatic with a recent study on "Flower arranging to ease pain". :shifty: I believe that Fibro is diagnosed so much more than CFS because who wants a CFS diagnosis? - you will be mocked and dismissed. And almost as many men are diagnosed with ME as women, but 4x as many women as men are diagnosed with CFS (the same thing). Again, what man wants an ME dx? How likely will a doctor dx a man with ME over a CFS? There is a lot at play here.
 
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milkboi

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Sep 25, 2018
Messages
1,627
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Germany
I've just finished reading this whole thread (looking for suramin info) and some of you are definitely onto what the research is proving, and some of you are way off. Sadly, I should've taken notes while going through. I'll be condensing information (of research) over the next few months, but for now.
ME/cfs (please let's lose the CFS term) is for sure not high estrogen. My God, if it were teen and young woman would be the main group falling, not pre-menopausel women - who's E is falling.
Undiagnosed low thyroid is NOT causing ME, but probably the majority of people with ME have subclinical hypoT and would benefit with treatment. The cause can be many things, one even being Empty Sella Syndrome.
Exercise is clinically proven (in blood, heart, brain scans and more) to be HARMFUL, not helpful, in ME - even graded exercise. (The authors of PACE are narcissistic, ego-maniacs. Their science has been disputed many times.)

This is a great channel. Look for the last year, and the green background videos. A very good one by Dr. Jarred Young on neuro-inflammation. SolveCFS

This channel, especially the conferences posted 5 and 8 months ago: Open Medicine Foundation - OMF

This is a 29 video playlist (harder to track on a smart t.v.). It is also presenters to an NIH conference. Some are more tech, some are more guarded, IDK, it's just different, but still very good info


This channel is by a very well known ME doc Lucinda Bateman, I've watched several of her presentations on other channels. I see they just posted two videos which sound controversial, I haven't seen them. Bateman Horne Center

ME/cfs has been greatly ignored since 1992 when two British psychiatrist wrote a paper stating it was psychosomatic. This was not only a massively poorly done study, even for its time, but as we know it has made it very difficult to gain research and credible traction sadly not only ruining the lives of millions of people, but also their families. Serious research restarted about 5 years ago, largely privately funded. I believe the private funding is exactly why they are making good headway. What I'm worried about is they are getting close to getting more NIH funding which will lead to pharma funding and there goes not only collaboration, but honesty.

Interesting note, some of these researchers are studying Gulf War Syndrome side by side with ME. The symptoms are largely the same. The biology is amazingly similar in about 75% of areas, and distincly different in about 25% of areas.

What the researchers haven't seemed to connect is a possible link between connective tissue disorders and ME, even though it (collagen mutations) appear in some of their research. And the hEDS researchers aren't, to my knowledge, collaborating with the ME researchers. EDS research is also largely funded and both British and US agency are pulling out of the EDS area, the Brits are pushing it more to psychosomatic. And finally, Fibro (which most scientist differentiate from ME) which is diagnosed 5x more than ME and has NIH funding is being pushed more and more as psychosomatic with a recent study on "Flower arranging to ease pain".


So what do you think are the most promising substances/lifestyle interventions for CFS?
 

Momentum

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Joined
Dec 9, 2019
Messages
172
So what do you think are the most promising substances/lifestyle interventions for CFS?
Good question and I'm not sure yet as far as current research (see note at bottom). I have hundreds if not into the thousands of pages right now, much of it simply saved to go back and condense. I've started a spreadsheet for genes to look at, even though we know it's not one gene, but they are finding common clusters.

It seems they are finding a lot of commonalities in things such as neurotransmitters, histamine, small fiber neuropathy, certain killer cells, and on and on. I really think it's important to evaluate if you may have a connective tissue disorder (by genes and/or symptoms) because this "may" be the foundation of things going wonky and probably not in a testable EDS gene. Although the testable type EDS can definitely be very sick.

I think genetic testing is going to be very valuable. For instance, they are seeing ME/cfs people are showing a problem with their Krebs cycle. So, is this is genetic mutation? If so, how do we hack it? What about methylation? Does one have zero, one or two MTHFR mutations? This will make a difference in treating. Trying to increase my glutathione has not gone well for me - is it a methylation issue? IDK. But there is evidence that ME people have too much glutamate, and I know I certainly react to MSG and many other forms of free glutamate. One fascinating study through Magnetic Resonance Spectomagraphy - MRS- was able to measure certain chemicals in the brain. They found that ME patients had too much myo-inositol, a problem with another chemical (I can't remember the name) and they had lactate in their brain. Apparently, healthy humans do not have any lactate in their brain. (I think we have a weak blood brain barrier and things are getting through that shouldn't.) I recently called the lab that did the study to see if they found the same results in patients' serum, but they didn't check. We do know from other studies that ME patients do have more lactate in their serum than healthy controls.
This doctor is looking at microRNA and has found that something as little as low pressure massage in ME patients causes a the same reaction as a healthy people distance running:

I hate spending money on testing. Been there done that, really didn't get me anywhere years ago. That being said, I think whole genome and exome will be helpful because even if ME patients have too much glutamate - how you lower it may depend on your genes. Looking into amino acid levels, nutrient levels like a proper B12 test could also be helpful, but I'm not sure necessary if money is an issue. Small fiber neuropathy - well, we probably all have that if you have chronic pain (in ME).

I will say, when my health collapsed the things that got me out of bed were thyroid and low dose prednisone to replace the cortisol I wasn't producing. And they did it quickly. (For those who would freak out over the use of steroids, please read Dr Jefferies book on "The Safe Uses of Cortisol". Over a thousand years of patient lives using and studying hydrocortisol and prednisone.) Also, mega dosing iodine has been extremely helpful and high quality MSM (never any already in a capsule). I will add addressing bugs and parasites. I use something highly controversial.
Now that I know about connective tissue disorders, I can also link things that are destructive to collagen to some of my health flairs. A high oxalate diet recently sent me over the edge as did foods high in free glutamates. Using a high quality silica (like Orgono Living Silica) has really helped my collagen.
 

Momentum

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Joined
Dec 9, 2019
Messages
172
@Momentum What are the krebs genes you are referring to and what thyroid protocol did you use?
I'm just starting to put a list of genes into a spreadsheet, but have several hundred bookmarked, or tabs open.
Thyroid? Started with Armour years ago, but developed high RT3 (thank God the doctor understood symptoms - because I thought Armour was flawless). Went on 75mcg of Cytomel dosed first thing in the morning. A few years later tried Armour again, within a few months high RT3 symptoms came back, went back to Cytomel. I love T3 meds because you can quickly adjust dosage to need. (I believe my reaction to Armour was their reformulation containing microcrystaline cellulose.)
 
Joined
Nov 27, 2017
Messages
960
Environmental toxins are the most important factor in me/cfs There may be underlying vulnerabilities before the environmental toxins and pathogen exposure, but the toxic exposure is still most important.
 

Geronimo

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Joined
May 11, 2020
Messages
346
Lifting weights is the solution

I 100% agree with this, anecdotally and scientifically. IBS and serotonin load is largely caused by fermented carbohydrates. Why don't people absorb carbs effectively? Their glycogen stores are already full. Lifting weights depletes glycogen and promotes proper glucose and fructose uptake. It also depletes systemic arachidonic acid, which is what most inflammatory factors are created from.

https://www.unm.edu/~lkravitz/Article folder/glycogen.html

Mechanical stimulation of skeletal muscle generates lipid-related second messengers by phospholipase activation - PubMed

Regulation of glucose and glycogen metabolism during and after exercise
 

No_Energy

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Joined
Dec 16, 2017
Messages
241
I know ssris have a bad reputation, specially around here. but, couldnt it be possible that it does work for some people, albeit not without nasty side effects (it would help to know the specific receptor type ang target it), considering that the ssris usually need some time to work, some 2 months, and this could be consistent with the hypothesis that it woud take that amount of time for the epigenetic changes and the consequent downregulation of the serotonin receptors to take place. what do you folks think?
 

Whataboutbob

Member
Joined
Apr 16, 2017
Messages
103
I've just finished reading this whole thread (looking for suramin info) and some of you are definitely onto what the research is proving, and some of you are way off. Sadly, I should've taken notes while going through. I'll be condensing information (of research) over the next few months, but for now.
ME/cfs (please let's lose the CFS term) is for sure not high estrogen. My God, if it were teen and young woman would be the main group falling, not women in their 40's and up - who's E is falling.
Undiagnosed low thyroid is NOT causing ME, but probably the majority of people with ME have subclinical hypoT and would benefit with treatment. The cause can be many things, one even being Empty Sella Syndrome.
Exercise is clinically proven (in blood, heart, brain scans and more) to be HARMFUL, not helpful, in ME - even graded exercise. (The authors of PACE are narcissistic, ego-maniacs. Their science has been disputed many times.)
Deconditioning is also not at all the situation, as many fall ill at the peak of their health
The recent research is clear ME/cfs is not psychosomatic, it is not one virus, one gene mutation or one auto-immune illness. It is a complex disease of multiple failures, mostly likely caused by a predisposition and triggered by..........a host of things.

This is a great channel. Look for the last year, and the videos that the thumbnail has a mint green background. A very good one by Dr. Jarred Young on neuro-inflammation. SolveCFS

This channel, especially the conferences posted 5 and 8 months ago: Open Medicine Foundation - OMF

This is a 29 video playlist (harder to track on a smart t.v.). It is also presenters at an NIH conference. Some are more tech, some are more guarded, IDK, it's just different, but still very good info - many of the same players worth getting to know.


This channel is by a very well known ME doc, Lucinda Bateman, I've watched several of her presentations on other channels. I see they just posted two videos which sound controversial, I haven't seen them. Bateman Horne Center

ME/cfs has been greatly ignored since 1992 when two British psychiatrist wrote a paper stating it was psychosomatic. This was not only a massively poorly done study, even for its time, but as we know it has made it very difficult to gain research and credible traction sadly not only ruining the lives of millions of people, but also their families. Serious research re-started about 5 years ago, largely privately funded. I believe the private funding is exactly why they are making good headway (and great new tech). What I'm worried about is that they are getting closer to getting more NIH funding which will lead to pharma funding and there goes not only collaboration, but honest studies.

Interesting note, some of these researchers are studying Gulf War Syndrome side by side with ME. The symptoms are largely the same. The biology is amazingly similar in about 75% of areas, and distinctly different in about 25% of areas.

What the researchers haven't seemed to connect is a possible link between connective tissue disorders and ME, even though it (collagen mutations) appear in some of their research. And the hEDS researchers aren't, to my knowledge, collaborating with the ME researchers. EDS research is also largely privately funded; but both British and US agencies are pulling out of the EDS arena, the Brits are pushing it more to the pain being psychosomatic. I believe they have calculated the cost of rising awareness, and a dramatic increase in possible hEDS diagnosis could be on the horizon - and that will be expensive. And finally, Fibro (which most scientist differentiate from ME) is diagnosed 4x more than ME and has NIH funding is being pushed more and more as psychosomatic with a recent study on "Flower arranging to ease pain". :shifty: I believe that Fibro is diagnosed so much more than CFS because who wants a CFS diagnosis? - you will be mocked and dismissed. And almost as many men are diagnosed with ME as women, but 4x as many women as men are diagnosed with CFS (the same thing). Again, what man wants an ME dx? How likely will a doctor dx a man with ME over a CFS? There is a lot at play here.

 

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