My current perspective on ME/CFS causes and treatment

Discussion in 'Fibromyalgia Main Forum' started by richvank, May 1, 2011.

  1. richvank

    richvank New Member

    Hi, all.

    I posted the following to another ME/CFS group, and think it might be of interest to some
    people here, too.

    I have researched ME/CFS essentially full-time for the past 15 years and have
    been a member of this group and others for a long time. I have learned a great
    deal from people here, as well as people in other ME/CFS groups on line, and
    from the more formal sources, including the published research literature,
    conferences, and personal interactions with clinicians and other researchers.

    There have been few too many reports of total recovery from this disorder.

    Both the causes and the individual aspects of this disorder are heterogeneous.

    Here are my current views on cause and treatment, based on experience up
    to now, for what they are worth.

    First, I continue to believe that there is a core mechanism in the
    pathophysiology of ME/CFS, involving a vicious circle in the basic biochemistry
    of the cells and the body as a whole, and that this vicious circle is what makes
    ME/CFS a chronic illness. Based on evidence that I believe is solid, this
    vicious circle involves the following features: depletion of glutathione, a
    functional deficiency in vitamin B12 that is caused by lack of protection of B12
    because of the glutathione depletion, a partial block of the enzyme methionine
    synthase in the methylation cycle that is caused by the functional B12
    deficiency, draining of folate from the cells via the "methyl trap" mechanism, caused by the partial block of methionine synthase, and continuing depletion of glutathione, caused by
    the dysfunction of the sulfur metabolism, which is also caused by the partial
    block of methionine synthase, thus completing and maintaining a vicious circle.

    In my view, the other common features of ME/CFS stem from this core vicious
    circle process.

    When I first came to this view in early 2007, I hoped that breaking up this
    vicious circle would bring complete recovery from ME/CFS for everyone who
    suffers from it. However, while there have been a small number of what are
    reported to be complete recoveries from treatment directed at lifting the
    partial block in the methylation cycle, most who have tried it have reported
    significant improvement, but not total recovery. Those who have reported
    complete recovery have also reported that they did several other types of
    treatment before or after the methylation treatment.

    So my current view is as follows:

    This vicious circle is in fact the central mechanism in the pathophysiology of
    ME/CFS. However, there are several different factors that can contribute to
    bringing it on initially in individual cases, and there can also be several
    issues that develop subsequently in a longstanding case of ME/CFS as a result of
    the dysfunction of the immune system and the detoxication system that result
    from this central mechanism.

    While ridding a person of this vicious circle mechanism will allow their body to
    correct many of the abnormalities present in ME/CFS, some of these prior or
    subsequently developing issues cannot be corrected by the body itself, even
    after the core mechanism has been eliminated, and they must also be treated
    specifically. The reason is that the immune system and the detoxication system
    are normally "housekeeping" systems, designed to cope with pathogens and toxins
    as they are presented to the body in the normal course of living. If these
    systems become dysfunctional, as occurs in ME/CFS, it is possible for pathogens
    to become entrenched, and for toxins to build up to high levels, and they can
    thus present larger challenges than these housekeeping systems are capable of
    coping with.

    Among these problems that are present in various cases are serious dysbiosis and
    dysfunction of the digestive system, toxic mold and other biotoxin illnesses,
    Lyme disease and its coinfections, high body burdens of toxic heavy metals,
    viral infections, and possibly retroviral infections. There may be others, but
    these are the ones for which I believe there is evidence. When these are
    present, they must be specifically treated, along with treatment of the partial
    methylation cycle block, and thus the vicious circle.

    That's where it currently stands, in my opinion.

    Best regards,

    Rich Van Konynenburg
  2. Mikie

    Mikie Moderator

    Sure wish you would put your high level of intelligence and research talents toward looking at the peptide injections. The docs and researchers in this area claim a very high level of success in our illnesses, and others.

    Thanks again.

    Love, Mikie
  3. TigerLilea

    TigerLilea Active Member

    Thanks, Rich.
  4. richvank

    richvank New Member

    Hi, Mikie.

    Thanks for the reminder. It's on my list. Have you heard any more about this lately?

    Best regards,

  5. Mikie

    Mikie Moderator

    Kelly, here on our board, is taking the injections. She responded on my post. I can't start them in May as my doc is off to Prague. Both docs in the practice travel a lot to seminars on this treatment. Kelly was not made aware, evidently, of the need to strictly avoid MSG when getting the injections so she is wondering whether hers have been as effective as they might have been. She is hoping that now she knows about MSG, her next injection will be better.

    I need to talk with my doc. I will be using up my food in the cupboard and freezer and going to only fresh fruits and veggies and organic meat, fish and poultry. MSG is in everything, including anything low fat, things with caramel coloring, and geletin. Even the "pure" Guai I buy here contains maltodextrose. Yikes!

    I know that the doc said I would need to give up a couple of my meds for several days before the injections and to fast on the day I get the shot. I'm just wondering whether the hidden MSG the rest of the time affects the efficacy of the injections. I really don't want that stuff in my body anyway but until now, I didn't realize just how prevalent it is.

    There isn't much online about the injectiions. There have been some studies but they are mostly old with mixed results. I think these treatments have come a long way since then. I also wonder whether the patients and researchers in the early studies knew about the MSG connection.

    Thanks for anything you find out. I respect your abilities and appreciate your generous sharing of info with us.

    Love, Mikie
  6. Manwithfibro

    Manwithfibro New Member

    I have tried everything from LDT to Questran (for toxin binding) to Chlorella (binding) to
    Vitamins heavy in Vit B6/zinc/B12 like CORE or METHYLGUARD. Everything throws me into a flare, especially the binding stuff. My WB is supposedly positive for LYME, but there is tons of main symptoms are severe pain and fatigue plus post-exertional severe fatigue if I overdo anything...even something most would consider minor like mowing grass.

    LLMD believes I may have a detoxification pathway issue that is either genetic or caused by these toxins. He says it could be HPU/KPU, but I cannot handle the loads of zinc/Vit B6 and had to cut back dramatically or I flare? Now, why would someone flare on B6/B12? This is baffling. Lymph system is sluggish and although swelling goes down following a LDT, it always
    swells back up. Thus, fighting something? Pathway problem?

    Any thoughts on what to do? So stumped.

  7. gapsych

    gapsych New Member

    Adrenal fatigue is not a recognized physical disease. However, adrenal exhaustion is a true disease and is diagnosed by a blood test.

    Preferably by an endocrinologist.

    Take care.

  8. gapsych

    gapsych New Member

    It's hard to determine if you are having a genuine herx reaction or are actucally getting side effects from the vitamins. I have always wondered how you can tell the two apart.

  9. richvank

    richvank New Member

    Hi, manwithfibro.

    What is the condition of your digestive system? Are you able to have a BM at least once a day?
    It may be that your digestive system is not able to excrete the toxins fast enough, so that they are being recycled by the enterohepatic circulation, i.e. being reabsorbed from the gut and being returned to liver, from whence they are able to travel around the general blood circulation, bathe the cells in general, and cause symptoms.

    The B6, B12 and zinc would be expected to stimulate the methylation cycle and the transsulfuration pathway, which would likely cause the detoxication system to become more active. mobilizing stored toxins at a higher rate. If they can't get out fast enough, they will circulate around and make you feel worse.

    I hope this is helpful.

    Best regards,

  10. richvank

    richvank New Member

    Hi, caledonia.

    I agree that the HPA axis is dysfunctional in most PWCs. Treating it directly may help, but I think this has to be done cautiously, because the rest of the metabolism may not be able to respond properly to adrenal stimulation until it is repaired a little. I guess I would favor holding off on raising cortisol initially. But if you mean giving the adrenals nutritional support, such as vitamin C and B5 and adrenal cortical extract, I think that is a good idea.

    Best regards,

  11. herbqueen

    herbqueen New Member

    Rich- due you think with all the overlap in symptoms between ME/CFS, Fibro, Lupus, MS, autism etc that all autoimmune disease may be related to the methylation issue and the individuals with MS for example would be aided? Curious if you Dr. Yasko has done any work with MS/Lupus and the autoimmune disease spectrum beyone ME/CFS/autism
  12. richvank

    richvank New Member

    Hi, herbqueen.

    Strictly speaking, ME/CFS, fibromyalgia and autism are not autoimmune diseases. It's true that the ANA is elevated a little in some cases of ME/CFS, and quite a few PWCs have Hashimoto's autoimmune thyroiditis as part of their illness, but the fundamental mechanisms in these disorders are not autoimmune.

    Lupus and MS, on the other hand, are considered autoimmune diseases. The damage mechanisms in these disorders do involve an immune attack on normal tissues, myelin in the case of MS, and in the case of lupus, connective tissue.

    I think there is some overlap in the pathophysiology, but the root causes are likely different. In ME/CFS, it looks as though one of the things that happens is that the myelin falls into disrepair. This probably accounts for the slowing of the brain's processing speed, which is the best-documented brain-related feature of ME/CFS. I suspect that it is also what leads to the electromagnetic radiation sensitivity of some PWCs. But I haven't heard of EMR sensitivity in MS, so I think the character of the myelin damage must be different there.

    I haven't really studied these disorders very much. I have all I can do to try to figure out ME/CFS and keep up with what's going on there lately! I don't know if Amy has done much on them. I think she did treat some MS cases when she was in private practice, before she began focusing on autism.

    I think there's always a suspicion that some pathogen (viral or bacterial) is at the basis of the autoimmune diseases, and that the immune system is responding to the pathogen, but because of the person's particular genetics, the immune system gets confused and ends up attacking the good guys as well as the bad guys. But these pathogens have been very elusive. I have a friend who believes that herpes-family viruses are at the basis of all the autoimmune diseases.

    We need more people studying the root causes of these diseases, too. They are devastating to the people who have them.

    Best regards,

  13. Manwithfibro

    Manwithfibro New Member

    Thanks for replying. My digestive system is ok UNLESS I take a binder like questran/chlorella etc...then it bogs down from what I believe are too many toxins. The fact that I am reacting
    so much to B6,B12, zinc, is there any way to help the detox process without causing such a massive flare? I feel like I am caught in a trap where I cannot detoxify. This has to be the source of most of the pain I have in my muscles, etc...although lyme doctor believes chronic lyme is playing a role (lots of controversy on this, though).
    I have eliminated processed foods, preservatives etc......what do you do when trapped like this?

  14. richvank

    richvank New Member

    Hi, Manwithfibro.

    If I were in your position, I think I would try to get some lab test data on the digestive system function and on the levels of toxic metals.

    I like the Diagnos-Techs Expanded G.I. Panel, which your doctor can order. It looks at a wide range of issues involving the digestive system.

    I would also suggest getting the Doctor's Data 24-hour urine toxic and essential elements test,and running it both with and without prior challenge with DMSA. Your doctor can order this test. It is also available without a doctor's order from

    If I were in your position, I might also consider trying smaller dosages. Please work with your doctor on these things. I am a researcher, not a licensed physician, and I can't advise on individual treatment unless a physician is on board to evaluate my suggestions in the light of knowledge of the particular case.

    Best regards,

  15. Manwithfibro

    Manwithfibro New Member

    I have a bad feeling certain genetic types cannot detoxify once this goes awry. I have seen literature now stating that certain pesticides can cause a disruption in heme synthesis. You are on the ball on this. Fixing it is the problem.

    Take care
  16. richvank

    richvank New Member

    Hi, Manwithfibro.

    You didn't mention activated charcoal. It is capable of adsorbing a variety of toxins and taking them out. It is the main treatment recommended by poison control centers for a variety of toxins. Some people take a few grams per day. Constipation can be prevente by slurrying it with Milk of Magnesia. Some people say it really helps them.

  17. Mikie

    Mikie Moderator

    I think you are right about the connection between infections and the autoimmune process. When I was researching mycoplasmas, Dr. Nicolson had written about what can happen when the mycoplasmas reproduce and rupture the cell so that the new mycoplasmas are released into the bloodstream. The new mycoplasmas may carry some of the body's DNA from the ruptured cell with them and when the immune system recognizes the pathogen as foreign, it also believes that the body's DNA is foreign. Or, conversely, the ruptured cell may carry some of the mycoplasmas' DNA on it and the immune system sees both as foreign.

    I believe that it was the mycoplasma infection which triggered my CFIDS/ME full blown. After an automobile accident, I also developed FMS. It was this combination of conditions which made it impossible for me to continue to work for so long.

    Now, I have Sjogren's Syndrome, an autoimmune condition. My ANA was neg. and my sed rate was in the "normal" range (but high for me); however, my crp is 6+, which indicates a high level of inflammation in my body.

    As soon as the peptide serum arrives, the doc will be calling and I'll start taking the injections. I'll post after the first one but there may or may not be much to post about. They can take time.

    Love, Mikie

    Oh, and BTW, if anyone drinks, activated charcoal will prevent a hangover. I don't recommend drinking that much but many of us are sensitive to alcohol and it doesn't take much. My doc wants me drinking a glass of wine or a beer daily but I don't. When I do drink, I need the charcoal so I don't wake up feeling like a wino.
    [This Message was Edited on 05/26/2011]
  18. Manwithfibro

    Manwithfibro New Member

    You won't believe this but I tried Activated Charcoal tablets as a substitute for Questran when I was looking for a binder that may be easier to handle and I went into the WORST FLARE in history. I spent most of my time in warm baths (with epsom salts) trying to get it to pass. I feel like it cleared a bunch of stuff but holy cow. My BP zoomed to over 200/100 due to the pain and flare. Now, I realize this is not a normal reaction, but neither is binding up with chlorella either. It is not supposed to cause constipation problems. Charcoal would rank as the biggest flare causer to date.
    Biggest Flares:
    1) Charcoal - Felt like I was going to die.
    2) Questran - severe pain and severe fatigue.
    3) Infra-Red Sauna - way more pain.
    4) Lymph Drainage if I don't have a binder to grab the release of toxins.
    5) Chlorella as far as binding -Constipation
    5) CORE or METHYLGUARD (Supplements high in B6/B12/Zinc) - more pain.
    6) Any exercise that overdoes it. - more pain and fatigue.

    Supposedly, the rapid intensity on Questran is showing lyme according to Dr Shoemaker, a researcher on biotoxins. Can you draw any conclusions to all of this? Believe me, I know you are a researcher and not a doctor, but you must think this correlates to something?

    Thanks Rich, TIM
  19. richvank

    richvank New Member

    Hi, TIM.

    I'm sorry to hear that all these detox efforts caused more problems for you. This is indeed puzzling.

    I think it would be helpful to know what toxins you are dealing with, and that's why I suggested some testing. Based on your past likely occupational or environmental exposures, do you have any idea what sorts of toxins there might be in your body, such as toxic metals, pesticides, or volatile organic compounds (paint solvents, etc.)? There are medical toxicology
    labs that can test for these things.

    There is also the Genovations Detoxigenomics Profile, which characterizes genetic polymorphisms in some of the detox enzymes, though it may be cheaper to go with, which characterizes a million polymorphisms from a saliva sample, for less money. This might give you some clues about how your detox system is programmed genetically.

    I hesitate to mention any other detox methods, but there is lemon juice, which (seemingly paradoxically) alkalinizes the urine and helps with the excretion of the class of toxins that are in the chemical form of weak acids. If you try lemon juice, it's important to use a drinking straw and to flush the teeth with water afterward, to avoid chelation of calcium from the enamel by citrate.

    It seems that whenever you bind toxins in the gut, more are released to the systemic circulation. That suggests that there might be a high body burden of toxins.

    One approach might be to take very small dosages of the binders, so as to release additional toxins slowly.

    You mentioned Dr. Shoemaker. Have you taken his series of tests for biotoxin illnesses (visual contrast sensitivity test, HLA genotypes, MSH, C4a, TGF-beta, etc.? If so, did they come out suggesting that you have biotoxin illness?

    What about possible ongoing exposure to mold?

    Best regards,


  20. Manwithfibro

    Manwithfibro New Member

    I have very positive VCS @ 99.9996%.
    MMP-9 was high even after already being on Questran/Actos.
    Leptin was 3x abnormal and Anti Diuretic hormone was low, thus causing frequent urination.
    Didn't get others mentioned tested as my PC doctor and I kind of found this by accident.

    I grew up near a SuperFund site in Ohio..They made caustic soda so a ton of chemicals were loaded into the river, lake and eventually, our shallow well system. Came to find out, that our well even picked up road salt. The EPA hid all this and settled way back in 1982 with the offending company to absolve them of liability. I am sure this is a contributing factor in my toxic issue. I read that the body has adjusted to be able to hold on to these toxins so that is why it doesn't want to let them go. Not sure how to proceed. I feel like I have tried everything. Even a clay/mud bath flares it. What do you do?
  21. richvank

    richvank New Member

    Hi, Tim.

    O.K., it sounds as though your exposure history would be consistent with high body burdens of toxins, so I think that it is probably true that using the various binders causes more stored toxins to be mobilized into the blood stream, where they then bathe all your cells, producing the symptoms. I'm really sorry that this happened to you. I have encountered a few other cases of major environmental toxin exposure over the past few years, and they are very difficult to treat.

    I think your best bet will be to test to find out what toxins are present, and then have the toxins removed directly from your blood, using hemodialysis, charcoal hemoperfusion, and/or continuous renal replacement therapy, whichever methods are appropriate for the toxins that are present. Here is a website that discusses these methods, with pros and cons:

    Hemodialysis is like what is used for people with kidney failure. It uses a membrane, and small molecules are filtered out of the blood. For larger toxin molecules that won't pass through the filter, the blood is passed over activated charcoal, and the toxins are adsorbed on the charcoal and removed from the blood by charcoal hemoperfusion. The third method involves use of a pressure difference to filter the blood by convection. I don't know the details of this method.

    The benefits of these approaches are that the toxins can be removed faster than can be done by the kidneys, via the urine, the liver, via the bile and stools, and the sweat glands via perspiration. Therefore, the cells are exposed to lower concentrations during the detox, and thus the symptoms should be more mild.

    I don't know where one can have this type of treatment done. I don't think it's very conventional, but you can probably track it down on Google or PubMed.

    I worked on another case some years ago where the person had gotten a big body burden of polybrominatedbiphenyls (PPBs) (flame retardants) because of an error in mixing cattle feed in Michigan. She was not able to detox it. I suggested the above approaches. Unfortunately, these methods were not well developed then, and she was also not in condition to travel, and she unfortunately succumbed. I think there has been more progress since then, and I hope this information will be of help to you. I would be interested to know if this turns out to be something that helps you. I wish you the best.

    Best regards,