• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Can methylation deficit effect on myelin tie together ME/CFS, autism,FM, MS, and EMH?

richvank

Senior Member
Messages
2,732
Hi, all.

As some of you know, I have become fairly sure that ME/CFS and autism are essentially the same disorder at the biochemical level. For a long time I have tried to understand what the link might be between ME/CFS and fibromyalgia. We know that many people who have one also have the other. Lately I've also been trying to understand why some people with ME/CFS also have EMH (electromagnetic hypersensitivity). And then there's multiple sclerosis, the cause of which is still not understood, but which is known to involve an autoimmune reaction and damage to the myelin on the nerves.

I'm starting to think that there might be a link between all of these disorders, involving a deficit in methylation, which in turn causes problems in repair of myelin, the fatty insulating material on nerve axons.

There are at least three substances in myelin that require methylation for their synthesis: myelin basic protein, phosphatidylcholine, and choline plasmalogen. There is good evidence in the published literature that a deficit in methylation will cause problems with maintaining the myelin.

Myelin is vital to the function of the nervous system. It serves as electrical insulation on the axons of the neurons. This prevents leakage of current and dissipation of nerve impulses (action potentials) and it also allows fast transmission of nerve impulses via the axons.

In ME/CFS, we now know that just as in autism, there is a deficit in methylation due to inhibition of the activity of methionine synthase in the methylation cycle. We also know that in ME/CFS the best documented brain-related features are slow processing speed and slow reaction time. These would be consistent with disrepair of myelin.

Perhaps fibromyalgia also results from myelin disrepair in at least some cases. It has been found that fibromyalgia involves an elevated sensitivity to stimuli within the central nervous system. It would seem that a myelin problem might account for this.

Recent work in MS has shown that treatment to improve methylation has produced improvement in some patients. What if the problem starts with a methylation deficit, followed by myelin degradation, and then the immune system responds to that, rather than being responsible for the initial insult to the myelin?

Some PWMEs/PWCs experience hypersensitivity to electromagnetic fields (EMH). I'm starting to believe that this may also be due to myelin damage, secondary to the methylation deficit. If the electrical insulation provided by myelin normally prevents loss of current from action potentials within the axons, it seems reasonable to me to suspect that myelin also normally protects the nerves from external currents. We can expect that environmental electromagnetic radiation is constantly generating currents in the human body, just as it does in receiving antennas. Perhaps when the myelin falls into disrepair because of the methylation deficit, it becomes electrically "leaky," and external currents can then enter the nervous system. I think that could account for the variety of neurologically related symptoms that people with EMH are reporting.

Anyway, this methylation deficit link to myelin damage looks to me as though it has the potential to explain several disorders, and if that's true, then treatment to support the methylation cycle and related pathways might have the potential to help other groups of sufferers beyond those who are already being helped.

Of course, a lot of work would need to be done to find out if this is true, but I think it is an avenue worth pursuing.

Best regards,

Rich
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
This is brilliant, Rich. It makes total sense to me.

I hope to hear more about your research on it in the future, and to get more info on what we can do to help heal the myelin damage.
 

Enid

Senior Member
Messages
3,309
Location
UK
Very interesting rich and seems to make sense to me following MRI's (quite disabled) and Neurologist and senior Doc in A & E following another collapse - damage to the myelin sheaths. Never solved of course. The pain during whatever test they did for nerve conduction was excessive too. (Might that explain "high spots" in the brain found also)
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi Rich,

Very interesting! And of course I have a further question: about 20 or 30% of us have been shown to have very abnormal cell surfaces--misfolding of cell surface proteins. (as shown in a PrPc test). This seems to indicate the presence of prions, though not the "mad-cow" type.

I have read that this is related to ion channels. I wonder if this abnormality in the cell surfaces would be any indication of myelin status? I am shooting in the dark here, but wanted to ask.

Thanks so much!
Sushi
 

richvank

Senior Member
Messages
2,732
Hi Rich,

Very interesting! And of course I have a further question: about 20 or 30% of us have been shown to have very abnormal cell surfaces--misfolding of cell surface proteins. (as shown in a PrPc test). This seems to indicate the presence of prions, though not the "mad-cow" type.

I have read that this is related to ion channels. I wonder if this abnormality in the cell surfaces would be any indication of myelin status? I am shooting in the dark here, but wanted to ask.

Thanks so much!
Sushi

Hi, Sushi.

As far as I know, the two are not directly related, but I do think they are connected by the vicious circle mechanism that I have suggested is at the basis of the pathophysiology of ME/CFS, namely, the combination of glutathione depletion and the partial methylation cycle block. I suggest that the methylation deficit is what causes the problems with myelin. I suggest that glutathione depletion in cells that make the misfolded proteins is responsible for them. I suggest that the misfolding involves cysteine residues in the proteins not being bound to their correct partners to form the right disulfide bonds, which give the protein its tertiary structure. Glutathione is necessary to keep the cysteine in its reduced state until the proper stage of the synthesis of the proteins. When there isn't enough of it, the cysteines form bonds they are not supposed to form, and that gives a misformed protein. I don't know where the ion channels fit in. I know that Dr. de Meirleir believes that they are involved.

Best regards,

Rich
 

LaurieL

Senior Member
Messages
447
Location
Midwest
Hi Rich,

Lately I've also been trying to understand why some people with ME/CFS also have EMH (electromagnetic hypersensitivity).

Some PWMEs/PWCs experience hypersensitivity to electromagnetic fields (EMH). I'm starting to believe that this may also be due to myelin damage, secondary to the methylation deficit. If the electrical insulation provided by myelin normally prevents loss of current from action potentials within the axons, it seems reasonable to me to suspect that myelin also normally protects the nerves from external currents. We can expect that environmental electromagnetic radiation is constantly generating currents in the human body, just as it does in receiving antennas. Perhaps when the myelin falls into disrepair because of the methylation deficit, it becomes electrically "leaky," and external currents can then enter the nervous system. I think that could account for the variety of neurologically related symptoms that people with EMH are reporting.

Another connection to consider in addition to the loss of methylation and its effects on the myelin sheath and EMF sensitivities could be the product of the loss of methylation. That would be biotoxin disease, of which alpha melanostimulating hormone or MSH is at the center, and results from the multiple induction of varied cytokines in response to the toxicity one encounters with this type of induction; and I surmise could also very well occur as a result with loss of methylation. Anti-Diuretic Hormone comes to mind immediately when I hear of any type of electrical sensitivity, whether it be one of receiving or emitting type of feeling from the patient. A decrease in ADH activity results in sodium ions being deposited on the skin of the individual, thus becoming a "conductor", and I surmise a "receiver".

Methylation is a huge part of this connection, but I also believe there are more than one positive feedback loops occuring.

Fibromyalgia can also be related through the biotoxin pathway resulting from loss of methylation in that decreased levels of MSH in which are so common in Biotoxin disease, also suppress endorphins associated with pain. I believe more info on the endorphins relates directly to the NF- Kappa B pathway and the prostaglandins. As a result of this induction an indivuals pain tolerance will go out the window. It is here in which it is commonly found that even a simple touch is painful.

Laurie
 

LaurieL

Senior Member
Messages
447
Location
Midwest
With activation of NF kappa B, an increased expression of pro-inflammatory and anti-apoptic genes encoding for cytokines, adhesion molecules, pro-inflammatory enzymes, including iNOS and COX, and Lipooxygenase.

An increase in NF Kappa=
IL-5 and CRP leading to pain and inflammation
COX 2 and PGE-2 and thromboxanes leading to inflammation and CV disease
IL-1 and Collagenase/MMP contributing to insulin resistance
LipoOxygenase and leukotrines to autoimmunity
iNOS and NO leading to Rheumatic disease
TNF-alpha
Adhesion Molecules both of the last leading to Cancer and neurodegenerative disease

and then you have the resulting ROS and oxidative stress also correlated with loss of methylation.

Laurie
 

LaurieL

Senior Member
Messages
447
Location
Midwest
Anyway, this methylation deficit link to myelin damage looks to me as though it has the potential to explain several disorders, and if that's true, then treatment to support the methylation cycle and related pathways might have the potential to help other groups of sufferers beyond those who are already being helped.

Of course, a lot of work would need to be done to find out if this is true, but I think it is an avenue worth pursuing.

I am from one of those other groups. I believe methylation will prove in the future to be helpful to many groups outside of the CFS/ME/FM group. Its gonna be big. :D

Laurie
 

Adster

Senior Member
Messages
600
Location
Australia
Hi Rich. Thanks so much for your efforts here, I'm very grateful that you give us so much of your time. I was wondering if you have any thoughts on the effect of heavy metals on the methylation cycle. I've sometimes wondered if the shutting down of the cycle be "protective".
 

richvank

Senior Member
Messages
2,732
Hi Rich. Thanks so much for your efforts here, I'm very grateful that you give us so much of your time. I was wondering if you have any thoughts on the effect of heavy metals on the methylation cycle. I've sometimes wondered if the shutting down of the cycle be "protective".

Hi, Adster.

Heavy metals are capable of blocking some of the enzymes in the methylation cycle. If their levels get too high, I think they will need to be chelated and removed in order for the methylation cycle to be brought back up to normal operation. I don't see the shutting down of the methylation cycle as protective, because it's a dead-end street. If methylation does not come back up, the detox system will not come back to normal operation, either, and the heavy metals will continue to build up. That's not good. Worse things will happen if this occurs.

Best regards,

Rich
 
Messages
90
Location
Sydney, Australia
Hi Rich,

I have had ME/CFS for 22 years, and never considered that I had EMH (electromagnetic hypersensitivity). I do recall however, having a very bad reaction to a MRI about 5 years ago, which of course was ignored. For about 2 months, I had a horrible sensation which I can best describe as my brain being dragged out of my skull. Could this be an indication of EMH?

Thanks very much for all your good information Rich.

Best wishes,

Sandra
 

Adster

Senior Member
Messages
600
Location
Australia
Hi, Adster.

Heavy metals are capable of blocking some of the enzymes in the methylation cycle. If their levels get too high, I think they will need to be chelated and removed in order for the methylation cycle to be brought back up to normal operation. I don't see the shutting down of the methylation cycle as protective, because it's a dead-end street. If methylation does not come back up, the detox system will not come back to normal operation, either, and the heavy metals will continue to build up. That's not good. Worse things will happen if this occurs.

Best regards,

Rich

Thanks Rich. I am chelating with DMSA and ALA and that along with the methylation support feel like the first real steps toward some recovery for me. Slow process though!
 

Vegas

Senior Member
Messages
577
Location
Virginia
Thanks Rich. I am chelating with DMSA and ALA and that along with the methylation support feel like the first real steps toward some recovery for me. Slow process though!

Yes, slow, but I agree, the best combination and clearly gets to the root of the problem.

I am curious if you worked on your gut to any significant degree before starting chelation or methylation support. I would venture a guess that this is what slows down progress for many...biofilms.
 

Adster

Senior Member
Messages
600
Location
Australia
Yes, slow, but I agree, the best combination and clearly gets to the root of the problem.

I am curious if you worked on your gut to any significant degree before starting chelation or methylation support. I would venture a guess that this is what slows down progress for many...biofilms.

I have tried to get my gut working, using a program of testing for flora imbalance, pulsed antibiotics then probiotics. It didn't work, and until I started chelating and supporting methylation I struggled to tolerate any of the probiotics and other supps. I'm unsure about the biofilm thing so will just continue to chelate for now. I am treating for gut yeast with Nystatin daily.
 

aquariusgirl

Senior Member
Messages
1,732
Adster.. the pulsed antibiotics and probiotics sounds v. similar to KDM's approach to the gut. Were you treated by him?.
I have heard from several ppl that this approach didn't work for them.
 

aquariusgirl

Senior Member
Messages
1,732
rich
is there something new in the literature that made you post about the connection v. methylation and MS?
just curious ...because i know some people with MS who might be interested in looking into this.
thanks
 

richvank

Senior Member
Messages
2,732
rich
is there something new in the literature that made you post about the connection v. methylation and MS?
just curious ...because i know some people with MS who might be interested in looking into this.
thanks

Hi, aquarius.

Not recent, but here's one I found:

Metab Brain Dis. 2006 Sep;21(2-3):121-37. Epub 2006 May 26.
Iron and the folate-vitamin B12-methylation pathway in multiple sclerosis.
van Rensburg SJ, Kotze MJ, Hon D, Haug P, Kuyler J, Hendricks M, Botha J, Potocnik FC, Matsha T, Erasmus RT.
Source

Chemical Pathology, National Health Laboratory Service and the University of Stellenbosch, Tygerberg Hospital, PO Box 19113, 7505 Tygerberg, South Africa. sjvr@sun.ac.za
Abstract

Some subjects with multiple sclerosis (MS) present with low blood iron parameters. Anecdotal reports and a single patient study suggest that iron supplementation may be beneficial in these subjects. Myelin is regenerated continually, but prerequisites for this process are iron and a functional folate-vitamin B12-methylation pathway. The aim of this study was to determine iron status, folate and homocysteine in MS subjects, and to evaluate the effect on MS symptoms if deficiencies were addressed. Results: In relapsing-remitting MS subjects, serum iron concentration correlated significantly with age at diagnosis (r=0.49; p=0.008). In Caucasian female MS subjects, serum iron and ferritin concentrations were significantly lower than in matched controls. In a 6-month pilot study, 12 subjects taking a regimen of nutritional supplements designed to promote myelin regeneration, improved significantly neurologically as measured by the Kurzke EDSS (Total Score means 3.50 to 2.45, 29.9%; p=0.021). These were significantly improved (p=0.002) compared to 6 control group patients taking multivitamins (Kurzke Score increased by 13.9% from 4.83 to 5.50). Both groups had significantly reduced homocysteine concentrations at 6 months, suggesting that methylation is necessary but not sufficient for myelin regeneration.

PMID:
16729250
[PubMed - indexed for MEDLINE]


I've just been putting together little pieces that are out there. In looking into EMH, I found a paper by Magda Havas in which she reported that cleaning up the electricity in the house power lines using filters helped some people with MS: http://www.magdahavas.com/wordpress/wp-content/uploads/2011/03/06_Havas_EBM.pdf

Rich
 

richvank

Senior Member
Messages
2,732
Hi Rich,

I have had ME/CFS for 22 years, and never considered that I had EMH (electromagnetic hypersensitivity). I do recall however, having a very bad reaction to a MRI about 5 years ago, which of course was ignored. For about 2 months, I had a horrible sensation which I can best describe as my brain being dragged out of my skull. Could this be an indication of EMH?

Thanks very much for all your good information Rich.

Best wishes,

Sandra

Hi, Sandra.

That sounds terrible! I haven't heard of that before, but it does sound like some type of sensitivity to magnetic or electromagnetic fields.

Rich
 

richvank

Senior Member
Messages
2,732
Hi Rich,





Another connection to consider in addition to the loss of methylation and its effects on the myelin sheath and EMF sensitivities could be the product of the loss of methylation. That would be biotoxin disease, of which alpha melanostimulating hormone or MSH is at the center, and results from the multiple induction of varied cytokines in response to the toxicity one encounters with this type of induction; and I surmise could also very well occur as a result with loss of methylation. Anti-Diuretic Hormone comes to mind immediately when I hear of any type of electrical sensitivity, whether it be one of receiving or emitting type of feeling from the patient. A decrease in ADH activity results in sodium ions being deposited on the skin of the individual, thus becoming a "conductor", and I surmise a "receiver".

Methylation is a huge part of this connection, but I also believe there are more than one positive feedback loops occuring.

Fibromyalgia can also be related through the biotoxin pathway resulting from loss of methylation in that decreased levels of MSH in which are so common in Biotoxin disease, also suppress endorphins associated with pain. I believe more info on the endorphins relates directly to the NF- Kappa B pathway and the prostaglandins. As a result of this induction an indivuals pain tolerance will go out the window. It is here in which it is commonly found that even a simple touch is painful.

Laurie

Hi, Laurie.

Thanks for sharing your thoughts about a link with biotoxin illnesses. I've been trying to find a link there, too. So far, I think the best possibility is that biotoxin illness can lead into glutathione depletion and a partial methylation cycle block. Slayadragon shared with me references indicating that some of the mold toxins deplete glutathione and produce oxidative stress. There are also some published papers suggesting that toxic molds deplete vitamin B12, which could be a link as well.

Best regards,

Rich