Is there any good evidence for the value of methylation, chelation, etc?

[Esther12]

Hi there.

I tend not to click on threads in this forum, but as I use the 'what's new' button to keep up with new posts, I often see the titles of others, and sometimes click on threads when it's not obvious from the title what it's about, and this has got me curious.

Is this stuff 'alternative', speculative, no real evidence base malarky; or is it all sciencey?

Some of the discussions here seem to involve people making really firm claims about things, but is there good evidence to support these claims?

Hope all are doing okay.

 

[alex3619]

As I see it it depends on the specific claim. For some things there is indeed good evidence, for some its semi-speculative, and some is currently unsupported. The issues with the methylation discussions are often real, but some of the claims about how things work are speculative: they might be right but are currently unvalidated. Some of it is also new science, which may or may not be validated in time. However the one clinical trial of methylation therapy on CFS by Rich did seem to show benefit. I wish he were still around to do a larger, better trial. The chelation stuff again varies. Metals are dangerous, but so is chelation: its about relative risk, and toxic metals can be lethal. I do not know enough about chelation to say much more on chelation, as most of my reading on this is way out of date.

 

[Freddd]

Hi there.

I tend not to click on threads in this forum, but as I use the 'what's new' button to keep up with new posts, I often see the titles of others, and sometimes click on threads when it's not obvious from the title what it's about, and this has got me curious.

Is this stuff 'alternative', speculative, no real evidence base malarky; or is it all sciencey?

Some of the discussions here seem to involve people making really firm claims about things, but is there good evidence to support these claims?

Hope all are doing okay.

Hi Esther,


Is this stuff 'alternative', speculative, no real evidence base malarky; or is it all science?

How about "all the above" in various proportions in various posts.


What do you really want to know? If you have FMS/CFS/ME and similar situations can some of this information help you? It depends upon how close your situation matches the ones for which there are working protocols and you can select wisely and find your way through your maze. And yes, some people do recover by nutritional means. Some people have a rough time of it and others have a less rough time. None of it is easy. Dying would have been easier.

So there is nothing here that can tell you exactly what to do like some kind of mantra. I further state that there is no simple pathway. However, there are some things that are pretty ironclad in understanding even though that understanding is bound to evolve. The whole AdoCbl/MeCbl/methylfolate/carnitine combination in general both overturns 50+ years of research into folic acid and Cyanocobalamin and is genuinely leading edge for it's effectiveness. If you read some of threads you may find some understanding, remembering that this is a noisy channel.

 

[alex3619]

Freddd, the noise in these discussions is due to the complexity. Its not easy, its hard, and people want to find quick easy answers, so the discussion and questions continue. There is no substitute for slowly going through the methylation issues, no easy fixes. There are a few simplified discussions (and protocols), but that simplification comes at the price that it misses a lot of the important information. In time the science will clarify, some of what we suspect will probably be proved wrong, but the added information will simplify things for us by telling us what is really important and what isn't. We are operating largely in the dark - simple answers are often inaccurate.

 

[ahmo]

Hi Esther. I started with Rich's SMP. Then I changed my diet to GAPS, after 8 years ME/CFS, which halted my downward neurological spiralling. When I finally included all the members of Freddd's "Deadlock Quartet" I've finally felt that real healing is happening. I've tried many other protocols during these 10 years, with positive results for a time, but until this focus on methylation I lurched from 1 crisis to the next. I've not felt so stable for my whole life.

I'm also supplementing for my SNPs, mostly minerals, with extra to help chelate metals. It took me a long time to assimilate Freddd's information. I still have to read his posts many times over. I found myself over-methylating twice, once when I raised B12 too high, later when I raised folate too high. In each instance I had skin eruptions until I understood the cause. These 2 need to be in a balanced relationship. But I now concur that the essence of my unwellness throughout my life is to be found in my congenitally under-functioning methylation process. Which came first, the celiac, the non-functioning thyroid, the methylation cycle down-regulation, I don't know. But I spent the first 8 years of ME/CFS getting thyroid right, and that never led to a wider healing. I've tested high for metals (esp. aluminum) and SIBO, am focused on reducing these levels before I increase methylation supps.

 

[adreno]

Everything is biochemistry. So, making your biochemistry run as it's supposed to makes sense, doesn't it?

Methylation is very real science, although a lot is unknown at this time. Take a look at this, for example :

DNA hypomethylation and human diseases

 

[A.B.]

I consider myself knowledgable on the topic of heavy metal chelation which I'll write about here (there is also chelation for atherosclerosis which is different).

The claims regarding benefits of chelation are anecdotal and difficult to evaluate. A known proponent of chelation is Andrew Cutler, a chemist.

Chelation is basically speculative, but there is evidence showing that heavy metals could cause or contribute to a variety of chronic diseases, and this is also plausible as far as biochemistry is concerned. See for example http://www.melisa.org/pdf/nialler.pdf

This is a complex topic by the way.

 

[Esther12]

Thanks all. I've got to admit, the number of unfamiliar terms and acronyms meant that I was not able to take much in.

Is there any published research indicating a positive impact upon CFS patients?

I'm mainly interested because I occasionally see a thread and see people making really firm claims about things that sound quite big and important, but for which I'm not aware of there being any good evidence. I'm generally cautious and wary about any proposed treatment for CFS, and some of the people here have spoken critically of anecdotes, etc, so I thought that I would check in on what was going on.

 

[Esther12]

A.B. You posted while I was typing! I'd just done a quick google on chelation, and it was generally autism stuff that came back, including some critical stuff on Andrew Cutler. To me, the chelation stuff looks dodgy, and reminds me of the way other dodgy medical stuff has been promoted.

 

[A.B.]

Is there any published research indicating a positive impact upon CFS patients?

I know of no chelation studies on CFS subjects, but there are a few where removal of dental amalgam led to improvement of chronic fatigue. The paper earlier makes some references I believe. This one here also found a correlation with Apo-lipoprotein E4 genotype, known to be a risk factor in Alzheimer's.
Mercury toxicity presenting as chronic fatigue, memory impairment and depression: diagnosis, treatment, susceptibility, and outcomes in a New Zealand general practice setting (1994-2006)

 

[Enid]

It seems pretty clear this does need addressing. When one has gone through the peculiarities of "metals" overload.

 

[Freddd]

A.B. You posted while I was typing! I'd just done a quick google on chelation, and it was generally autism stuff that came back, including some critical stuff on Andrew Cutler. To me, the chelation stuff looks dodgy, and reminds me of the way other dodgy medical stuff has been promoted.

Hi Esther,

A revolution has to start somewhere. Revolutions hardly ever start in the heart of the establishment. I have been a systems analyst and consultant in group healthcare since 1980 or so, a software developer for the group healthcare since 1982. The problem with chelation that makes it look dodgy is more a problem of proper diagnosis. Chelation can do some good if and when the problem actually is present. Take mercury for instance. That has been the target for all sorts of practitioners who do a wallet biopsy first because lots of treatment that can do no good and never works is expensive and has to be kept going on faith. Now there are a very small number of people who have the 30+mg of body load of monomethyl mercury that can cause toxic reactions. However, it doesn't hang around indefinitely as the serum halflife is 71 days. In two years a person goes through 10 halflifes reducing the monomethyl mercury level to 1 tenth of 1% of what it was at the beginning. The problems arises when a person has a high and steady input. 10mcg a day of metallic mercury from amalgams is not such a "high" and steady. That amounts to 1mg each 100 days. If it is all converted to monomethyl mercury the steady state level can be easily calculated, and it never gets up to more than a couple of percent of "lowest toxic symptoms" level. A person that has perhaps 1mg in their body is generally going to have no noticeable response to mercury despite it being visible in provoked testing. There are some people who are individually hypersensitive to mercury but that is not the same as a mass quantity toxic reaction. So it is treatable indefinitely to no good effect. but all sorts of side effects. Be skeptical. Question everything. One of the things I have been working on is the disambiguation of "detox", as the way it is now used is worse than useless with maybe a dozen or more meanings used indiscriminately.

 

[Esther12]

more a problem of proper diagnosis.

There is a danger that diagnoses like 'CFS' can lead to people with different problems being lumped together in a way that makes it hard to identify significant abnormalities or treatments. Is there any good evidence that a sub-type of patients benefit from these interventions though?

There are problems with gathering evidence for treating 'CFS' in any particular way, but a trial focusing on these with particular test results could still be done. Actually, I have no idea as to whether this sort of testing has been shown to provide meaningful results - has it been widely accepted that they do? Or is that still uncertain?

 

[adreno]

There is a danger that diagnoses like 'CFS' can lead to people with different problems being lumped together in a way that makes it hard to identify significant abnormalities or treatments. Is there any good evidence that a sub-type of patients benefit from these interventions though?

I am sure there are people who have toxic levels of heavy metals, and can perhaps benefit from chelation, if done effectively. But I do not believe that heavy metals are a common cause of ME/CFS, or that there is a whole subgroup suffering from this. It is most likely rare. It wouldn't be at the top of my list to test for. I've had a urine heavy metal test done though, and it showed nothing out of range. Needless to say, I won't be trying any chelation.

 

[A.B.]

I've had a urine heavy metal test done though, and it showed nothing out of range. Needless to say, I won't be trying any chelation.

This is precisely why Fredd talks about difficult diagnosis. The topic is extremely complex.

Urine testing is of no use in determining the body burden of mercury, which is what counts. In the urine is only what comes out, not how much is retained by the body. It also says nothing about how the body is reacting.

DMPS/DMSA assisted challenge tests only reflect the amount of mercury in the blood and kidneys.

The hypothetical form of mercury poisoning in question here is either slow gradual increase of mercury in particularly sensitive tissue (the brain, thyroid, etc.), or metal allergy. The latter can be diagnosed by MELISA, the former cannot presently be diagnosed in a living human as far as I know. Mercury exposure is also risk factor in the etiology of autoimmune diseases. In any case, we're talking about a low dose of mercury that only affects susceptible individuals.

The uselessness of urine testing is illustrated by several studies listed in this paper under the "Limited Applicability of Hg-Values in Bio-Markers"
http://iaomt.guiadmin.com/wp-content/uploads/articles_Mutter-amalgam-risk-assessment-2005.pdf

A paper that's probably easier to read is this one:

For recent acute exposure to mercury, blood and urine levels of mercury can be useful for diagnostic and dosage estimation purposes (Clarkson, 2002; Risher and Dewoskin 1999; Risher and Amler, 2005). However, for historical, chronic or low dose exposures (Risher and Dewoskin, 1999), blood and urine levels do not accurately reflect exposure levels. In addition, the retention time of mercury in certain organs, particularly the brain (Braunwald et al., 2001; Hargreaves et al., 1988; Opitz et al., 1996; Takeuchi et al., 1989; Vahter et al., 1994), is much longer than that of blood. A case worth noting is that of an industrial worker exposed to quite high levels of mercury (Opitz et al., 1996 ), who after treatment, showed blood and urine levels consistent with total body clearance of mercury within 3 years. However upon the patient’s death, 17 years later, considerable deposits of mercury still remained in the patient’s brain. Clearly in this case, blood and urine levels were not indicative of mercury body load.

http://www.asquifyde.es/uploads/doc...ligands-in-the-toxicology-of-mercury-2007.pdf

The problem in this area is the complete lack of useful diagnostic methods.

 

[Freddd]

There is a danger that diagnoses like 'CFS' can lead to people with different problems being lumped together in a way that makes it hard to identify significant abnormalities or treatments. Is there any good evidence that a sub-type of patients benefit from these interventions though?

There are problems with gathering evidence for treating 'CFS' in any particular way, but a trial focusing on these with particular test results could still be done. Actually, I have no idea as to whether this sort of testing has been shown to provide meaningful results - has it been widely accepted that they do? Or is that still uncertain?

Hi Esther,

I would say that, within the FMS/CFS/ME complex that there are probably at least a dozen or more large subsets with each of those having several variations. I have a questionnaire that can detect and distinguish currently some number of major specific subsets. Part of the problem is that "B12" deficiency has been considered a single thing. There are at least 4 major different deficiencies as b12, then multiple variations on folate problems and then it explodes from there. As most people have perhaps 100 or more symptoms out of a universe of well over 300 symptoms, just which subsets of symptoms they have can to some extent indicate which deficiencies they have. These are complicated by all other vitamins and minerals etc.. One person might have primarily digestive and muscle problems, another neurological and skin problems, and so on. All this depends upon the combinations and durations of deficiencies. There are hundreds of "diseases" that can be defined by limited subsets of the symptoms.

 

[adreno]

The problem in this area is the complete lack of useful diagnostic methods.

Well, that is unsettling. So basically any or all of us could have mercury poisoning without a chance of verifying it. And the only thing to do is an empirical trial of chelation?

 

[caledonia]

Watch the Methylation Made Easy videos - the link is in my signature. There are references for everything listed below the videos.

ME/CFS/FM are all one thing - a methylation based disease. Poor methylation genetics + environmental exposures which overwhelm your body's ability to deal with them = multifactorial disease.

There can be many combinations of genetics and many combinations of environmental exposures which cause many types of symptoms, fast or slow onset, etc., which is why everyone gets confused and says we're all different. But the mechanism behind the disease process is the same, and that's what makes it all the same disease.

However, even though it's one disease, there is no one-size-fits-all treatment. There are general procedures to follow, but it has to be individualized for each person.

All this information and more is in my videos.

You'll be hearing a lot more about individualized medicine based on genetics as time goes on - the science is still in it's infancy (only about 10 years old), but it's going to be a huge game changer. It's your choice as to whether you want to be a pioneer, or wait (probably about 20 years) until it becomes more mainstream.

 

[Esther12]

Hi Esther,

I would say that, within the FMS/CFS/ME complex that there are probably at least a dozen or more large subsets with each of those having several variations. I have a questionnaire that can detect and distinguish currently some number of major specific subsets. Part of the problem is that "B12" deficiency has been considered a single thing. There are at least 4 major different deficiencies as b12, then multiple variations on folate problems and then it explodes from there. As most people have perhaps 100 or more symptoms out of a universe of well over 300 symptoms, just which subsets of symptoms they have can to some extent indicate which deficiencies they have. These are complicated by all other vitamins and minerals etc.. One person might have primarily digestive and muscle problems, another neurological and skin problems, and so on. All this depends upon the combinations and durations of deficiencies. There are hundreds of "diseases" that can be defined by limited subsets of the symptoms.

Is there any way of testing your methods? Are there different forms of testing which should be mutually supporting, and could be performed under blinded conditions? With this sort of complexity, there is a greater danger of bias/misinterpreting results, and so on. Trying to validate your techniques under blinded condition might help you spot any area where your theories do not work.

Post-XMRV, I've really come to appreciate the importance of trying to test one's theories under blinded conditions.

Ta for the links Caledonia. I watched the first part, and it felt like it was just presenting a story, rather showing us what evidence there was which showed this story was true. I'll try to get around to watching the other parts later, but my PC is struggling to play video without glitching at the moment.

 

[adreno]

Esther12,

You might find the following presentation by Dr. Ben Lynch more to your liking. He doesn't make specific claims about ME/CFS, but talks about the relation between MTHFR defects and chronic diseases.