The Methylation Cycle by Dr. Sarah Myhill

Discussion in 'Fibromyalgia Main Forum' started by Bluebottle, Jun 21, 2009.

  1. Bluebottle

    Bluebottle New Member


    The Methylation Cycle






    by Dr. Sarah Myhill

    www.drmyhill.co.uk



    Chronic Fatigue Syndrome is a symptom, not a
    diagnosis, and the name of the game is to identify
    the underlying causes. In fatigue syndromes we don't
    see macro-pathology, we see micro-pathology - that
    is to say the problems are bio-chemical and occur at
    the molecular level.


    There are several cycles, which I now know to be
    centrally important in causing fatigue. All these
    cycles interlink with each other like Olympic rings
    and getting one cycle going will drive another.

    The important cycles which I know to be major
    players include blood sugar wobbles, allergy
    problems, sleep cycles, mitochondrial function,
    anti-oxidant status, the NO/OONO cycle, thyroid and
    adrenal hormones cycles and de-toxification.

    I am greatly indebted to Rich van Konynenburg for
    updating me on a new player which interlinks with
    many of the above, namely the methylation cycle.



    The Methylation Cycle


    Rich van Konynenburg's idea is that ineffective
    methylation is a major cause of fatigue. There are
    many possible reasons but those that he's identified
    for which methylation is essential to are:


    1. To produce vital molecules such as Co
    Q-10 and carnitine.

    2. To switch on DNA and switch off DNA.
    This is achieved by activating and
    deactivating genes by methylation. This is
    essential for gene expression and protein
    synthesis. Proteins of course make up the
    hormones, neurotransmitters, enzymes,
    immune factors and are fundamental to
    good health. When viruses attack our
    bodies, they take over our own DNA in
    order to replicate themselves. If we can't
    switch DNA/RNA replication off then we will
    become more susceptible to viral infection.

    3. To produce myelin for the brain and
    nervous system.
    4. To determine the rate of synthesis of
    glutathione which is essential for
    detoxification.

    5. To determine the rate of synthesis of
    glutathione which is an essential
    anti-oxidant as glutathione-peroxidase.
    Furthermore oxidative stress blocks
    glutathione synthesis - yet another vicious
    cycle!

    6. To control sulphur metabolism of the
    body, not just glutathione but also
    cysteine, taurine and sulphate. This is an
    important process for detoxification.

    7. As part of folic acid metabolism. This
    also switches on synthesis of new DNA and
    RNA.

    8. For normal immune function. The
    methylation cycle is essential for cell
    mediated immune function and blockages
    here will mean that infections will not be
    adequately dealt with. I know this clinically
    because many patients tell me that once
    they get on to their B12 injections (an
    essential co-factor for methylation) this
    seems to protect them from getting
    infections.



    The overall effect here is that if the methylation
    cycle doesn't work, the immune system
    mal-functions, the detoxification system
    mal-functions, our ability to heal and repair is
    reduced and the anti-oxidant system mal-functions.




    The Bio-chemistry
    (you can ignore this bit if you like because it's not
    essential to know but it's interesting).


    There are four cornerstones to the methylation cycle
    and on each cornerstone sit four molecules namely
    homocysteine, methionine, S-adenosylmethionine
    (SAMe) and S-adenosylhomocysteine.

    Each of these cycles leads into the next one by
    means of enzymes. The important co-factors that
    allow this to happen are the B vitamins such as folic
    acid, vitamin B12 and vitamin B6. In converting from
    S-adenosyl homocysteine into homocysteine, a
    methyl group is given up and this can be used to
    stick on to other molecules - hence the name, the
    methylation cycle.



    However, there is a particular bio-chemical glitch
    here. In order for the methylation cycle to work these
    B vitamins have to be in their activated form, namely
    methylcobalamin, folinic acid and
    pyridoxyl-5-phosphate. In order to get cobalamin into
    methylcobalamin, the methylation cycle has to be
    working. So if this cycle has crashed completely, the
    body can't make methyl cobalamin in order to get it
    up and running again.

    Since this cycle is so fundamental to other
    biochemical cycles, including trans-sulphuration and
    folate metabolism, it can't change the vitamin B6,
    folic acid and cobalamin into the active forms
    necessary for the methylation cycles to work.


    This means that in order to get this cycle up and
    running initially we have to prime the pump with the
    activated vitamins, but hopefully once the
    methylation cycle is up and running, it can function
    on the vitamins in their normal states.



    Testing for how well the methylation works


    We don't have a simple test to see how well the
    methylation cycle works. What we can do is measure
    levels of homocysteine and SAMe. If these were
    raised this would show a blockage in one part of the
    pathway.

    Indeed, a raised homocysteine we know to be a
    major risk factor for arterial disease, almost certainly
    because this represents blockages in the methylation
    cycle. However, one could have a normal
    homocysteine and normal SAMe but blockages
    elsewhere in the system, which would still impair the
    ability to methylate. So there is no simple test.


    How do we go about treating this? Rich van
    Konynenburg has identified a package of
    micronutrients specifically to support the methylation
    cycle.

    He recommends the activated form of vitamins.
    These are more expensive than the basic forms, but
    I think that the idea here is that they are necessary
    in the short term to get the cycle working and in the
    longer term they can be dropped off.

    In addition to the basic three B vitamins Rich van
    Konynenburg has one or two other additions which
    you may also like to choose to use, but my initial
    suggestions would be as follows.




    The Methylation Cycle - which supplements
    to take to support


    This is the package of supplements to support the
    methylation cycle. It needs to be taken in addition to
    everything else!

    But the package will change with time because as
    the methylation cycle starts to work again, it will
    start to stand on its own feet.

    Everyone's package will be a bit different depending
    on how poorly their cycle is working.

    One day we will have the biochemical tests to tailor
    make each package for each person, but until then I
    suggest the following regime:



    For two months a daily dose of

    * Hydroxycobalamin 5,000mcgms daily ("shot O
    B12")
    * Methylcobalamin 1mg sublingually
    * Methyltetrahydrofolate 800mg (ActiFolate)
    * Pyridoxal 5 phosphate 50mgs twice daily
    * Glutathione 250mgs daily
    * Phosphatidyl Serine 200mgs one daily (BioCare)



    If you are better - fine! If you are worse - it may be
    the abreaction. If you are unchanged, swap the
    sublingual B12 for injected B12 ie:


    * Daily subcutaneous injections methylcobalamin
    1/2ml (this is a bit more expensive than
    cyanocobalamin). I would prefer people to start
    with this regime but I know many do not fancy
    the idea of injections - actually I am a wimp
    too, but they are easy and almost painless.
    * Methyltetrahydrofolate 800mg (ActiFolate)
    * Pyridoxal 5 phosphate 50mgs twice daily
    * Glutathione 250mgs daily
    * Phosphatidyl Serine 200mgs one daily (BioCare)
    * Lecithin (phosphatidyl choline) and Phosphatidyl
    Ethanolamine.



    If you are better - fine! If you are worse - it may be
    the abreaction. If you are unchanged add in:

    * Tri-methylglycine (also known as betaine
    hydrochloride, also used to increase stomach
    acid so take at meal times and be mindful that
    it may cause symptoms of acidity - see
    information on hypochlorhydria).
    * S-adenosyl methionine (SAMe) directly as a
    supplement 400mgs daily



    Once you are better


    Then the regime can be relaxed. Once you are a good
    methylator, methyl B12, ActiFolate and glutathione
    could be tailed off. Injections could be swapped for
    oral supplements. However, do this slowly - some
    people need a small supplement long term in order
    to stay well.


    1. Methyltetrahydrofolate 800mg (ActiFolate).
    2. Hydroxycobalamin 5000mcgms sublingually
    (Shot-0-B12), together with Methylcobalamin
    1000mcgms sublingually. It may be necessary
    for some people to have B12 by injection to get
    the best effect (easy to self inject 1/2ml daily,
    initially as methylcobalamin then switch to the
    less expensive cyanocobalamin)
    3. Pyridoxyl-5-phosphate 50mgs (this is present in
    the BioCare multivitamin)
    4. Phosphatidyl Serine 200mgs one daily (BioCare)
    These should be taken in addition to my basic
    package of supplements, namely multivitamins,
    Myhill Magic Minerals, essential fatty acids,
    vitamins C and D - these are the supplements I
    like all people to take on a regular basis.




    Problems with starting this package of treatment



    Rich van Konynenburg has been in contact with
    patient and support groups and about 60 so far have
    gone through this regime.

    He seems to see two categories of effect - firstly
    sometimes a quite rapid and profound improvement
    in some of the common symptoms, or secondly
    symptoms worsening or new symptoms arise because
    in getting the methylation cycle going one suddenly
    starts to get detox and die off symptoms.
    The reason for this is that when the methylation
    cycle was not working the body was unable to detox
    properly and unable to produce cell mediated
    immune responses to get rid of chronic infections.


    Once the methylation cycle is up and running,
    suddenly the body can swing into action with respect
    to detox and cell mediated immune responses and
    this can make the person much worse.

    The reasons for this are fairly obvious - as soon as
    one starts to detox one mobilises chemicals and
    toxins into the blood stream, this makes people ill.

    Secondly remember that it is not viruses and chronic
    infections that make one ill, it is the immune reason
    against them. Cell medicated immune responses
    make you feel sick! So it is really important to go
    into this regime gently, be mindful that it may make
    things worse initially but see this as a good sign.



    Rich tells me that the following symptoms of CFS
    have been reported to have been corrected and so I
    have taken his list and repeated it at length so you
    can see the sort of things to expect. PWC means
    People With Chronic fatigue.



    "The following symptoms of CFS have been reported
    to have been corrected by various PWCs on this
    treatment. Note that these are gathered from reports
    from many PWCs, so that not all have been reported
    by a single person.


    1. Improvement in sleep (though a few have
    reported increased difficulty in sleeping
    initially).
    2. Ending of the need for and intolerance of
    continued thyroid hormone supplementation.
    3. Termination of excessive urination and
    night-time urination.
    4. Restoration of normal body temperature from
    lower values.
    5. Restoration of normal blood pressure from lower
    values.
    6. Initiation of attack by immune system on
    longstanding infections.
    7. Increased energy and ability to carry on higher
    levels of activity without post-exertional fatigue
    or malaise. Termination of "crashing."
    8. Lifting of brain fog, increase in cognitive ability,
    return of memory.
    9. Relief from hypoglycaemia symptoms.
    10. Improvement in alcohol tolerance
    11. Decrease in pain (though some have
    experienced increases in pain temporarily, as
    well as increased headaches, presumably as a
    result of detoxing).
    12. Notice of and remarking by friends and
    therapists on improvements in the PWC's
    condition.
    13. Necessity to adjust relationship with spouse,
    because not as much caregiving is needed.
    Need to work out more balanced responsibilities
    in relationship in view of improved health and
    improved desire and ability to be assertive.
    14. Return of ability to read and retain what has
    been read.
    15. Return of ability to take a shower standing up.
    16. Return of ability to sit up for long times.
    17. Return of ability to drive for long distances.
    18. Improved tolerance for heat.
    19. Feeling unusually calm.
    20. Feeling "more normal and part of the world."
    21. Ability to stop steroid hormone support without
    experiencing problems from doing it.
    22. Lowered sensation of being under stress.
    23. Loss of excess weight.




    The following reported symptoms, also gathered from
    various PWCs trying this simplified treatment
    approach, are those that I suspect result from die-off
    and detox:


    1. Headaches, "heavy head," "heavy-feeling
    headaches"
    2. Alternated periods of mental "fuzziness" and
    greater mental clarity.
    3. Feeling "muggy-headed" or "blah" or sick in the
    morning.
    4. Transient malaise, flu-like symptoms.
    5. Transiently increased fatigue, waxing and
    waning fatigue, feeling more tired and sluggish,
    weakness.
    6. Dizziness.
    7. Irritability.
    8. Sensation of "brain firing: bing, bong, bing,
    bong," "brain moving very fast".
    9. Depression, feeling overwhelmed, strong
    emotions.
    10. Greater need for "healing naps."
    11. Swollen or painful lymph nodes.
    12. Mild fevers
    13. Runny nose, low grade "sniffles," sneezing,
    coughing.
    14. Sore throat.
    15. Rashes.
    16. Itching.
    17. Increased perspiration, unusual smelling
    perspiration.
    18. "Metallic" taste in mouth.
    19. Transient nausea, "sick to stomach"
    20. Abdominal cramping/pain.
    21. Increased bowel movements.
    22. Diarrhoea, loose stools, urgency.
    23. Unusual colour of stools, e.g. green.
    24. Temporarily increased urination
    25. Transiently increased thirst.
    26. Clear urine.
    27. Unusual smelling urine
    28. Transient increased muscle pain.



    What to do if you're not getting better

    If you are still struggling then there must be another
    cause of fatigue that has not been addressed.
    Remember, fatigue is just a symptom! There are
    many parallels between chronic fatigue syndrome
    and autism and many of these ideas have already
    been used in the treatment of autistic children with
    excellent results. This work has been pioneered by Dr
    Amy Yasko N.D., Ph.D. in America.


  2. Diva55

    Diva55 New Member

    Thanks for posting this.

    It seems strange that she is referring to & quoting Rich when the supplements in the "packages" don't appear to match Rich's protocol very much.

    Maybe I'm missing something & it's because you can't get some in the UK & she's matching products with what's available. She has included higher dosages & things not included in Rich's protocol.

    Anyway just my observations & would be interesting to see if anyone in the UK is following this & if it's helping.
    I'm in the UK but am following Rich's protocol with most supps bought in the USA.

    Best wishes
  3. cfsgeorge

    cfsgeorge New Member


    This is really great stuff coming from Dr Myhill again. She is really looking at the "big picture".

    At first i was bothered when i first read "Chronic Fatigue Syndrome is a symptom, not a
    diagnosis" but then i read "the name of the game is to identify the underlying causes." She further says she believes there are many causes(cycles/rings) which are all interlinked. The important point is that we have to look at all the different causes or interelated "rings" that is causing the symptom of CFS. This makes alot of sense to me.

    Rich has provided us a huge piece of the puzzle or a "ring" with his methylation block theory. I want to thank Rich again for all his hard work.


  4. frickly

    frickly New Member

    Thanks for posting this. I have researched this extensivly and am taking many medications, including glutithione/ATP injections. It has had a profound affect on me and I am starting to gain my life back. I do beleive that there is a connection between autism and CFS and, under the direction of a knowledgable doctor, my son is taking many of the same supplements as I, including the active form of several supplements.

    In response to the other post regarding the methylation cycle being humorous. The best research is trying a protocol and seeing results. I do not think it is humorous that thousands of parents are trying this treatment so that their children with autism can have a normal life. I also do not think my results are humourous. They are important to me and I am getting my life back because of this research.

    One more note: The options for treatment in autism is the same option we with CFS are being given by the CDC. Cognitive Behavioral therapy and antidepressants. No cause, no cure. I do not beleive this. We just havn't found it yet and must keep our minds open to new thoughts in this area.
  5. panthere

    panthere Member

    you should lighten up! some people have been helped by methylation protocol. Have you read rich's study? we have to be more positive about treatments :)
  6. AuntTammie

    AuntTammie New Member

    Since you seem to want to shoot everything down, I'm wondering what exactly you think works? Or do you think that nothing works and it is just hopeless (and for some reason you feel a need to try to get others to share in your sense of hopelessness)? Seriously, I don't mean that in a mean way, I just wonder why your posts are eternally negative.

    I'm not saying that some skepticism is not a good idea, but sometimes it pays to have a little faith, too, esp when the ideas are not making anyone any money and have been shown to help many people. If you know of real scams that people are making money off of and that are harmful to sick people who just want to get well, then by all means please tell us, but otherwise what's the point?

    It's not like you have to try the things that you are so against. And it's not like we are all gullible idiots and need your expert advice to save us from ourselves. We are capable of making our own informed decisions. Whether you intend it that way, or not, your posts come across as condescending, negative, and borderline rude....not to mention that in some cases, I think they are hurtful to people who are genuinely trying to help.
  7. frickly

    frickly New Member

    "I worked with autistic children, and their parents would try anything that might help them. If the protocol truly worked, news of it would have spread like wildfire amongst the autistic community. It hasn't."

    With the help of Amy Yasko and other doctors, many of whom have children that are autistic, defeat autism now and Jenny McCarthy it has "spread like wildfire". Autism reports are on the news all the time and DAN! doctors are popping up everywhere. Many of these doctors have children with autism which is why they do what they do. My son's own doctor has a son with autism and a wife who has ankylosing spondylitis, FM and Rheumatoid arthritis. He also beleive these issues are related. It is not an accident that this treatment has spread throughout this community. It is because children are improving on treatment. I beleive Rich has given us another piece to the puzzle and I am grateful.

    Also, parents of autistic children are not stupid. We are capable of doing research and making knowledgable decisions for our children. I think the CFS community could take a lesson from the parents of these autistic children. They have managed to educate the world about autism, give people hope for their childrens futures, and move an alternative treatment towards mainstream medicine.

    I edited to add: One of the first things I was given on my first visit to my CFS doctor was a description of the methylation cycle block. I am being treated based on this and it is working. This is not just one guy trying to get people to try his protocol. There are doctors treating patients based on this research.

    [This Message was Edited on 06/24/2009]
  8. frickly

    frickly New Member

    You are so ill informed I don't even know where to start. I could go over every point you made and provide documented research that supports the opposite of your conclusions but it would take a great deal of my time and, frankly, not worth the effort. I have three children who need my attention and we are going to the pool. I suggest you educate yourself about the sorted history of vaccines. Also, that these DAN doctors and Jenny do not beleive that vaccines cause autism. Your attitude and others who share it is why it is taking so long to find a cause and cure for CFS and autism.


    "A certain segment of society appears to be emotionally invested in medical beliefs that are not based on science, but rather anecdotes, conspiracy theories, and magical thinking"

    We are emotionally invested in our children not magical thinking! Wow, I am getting a headache and done with this conversation.[This Message was Edited on 06/24/2009]
  9. richvank

    richvank New Member

    Hi, nofool and the group.

    The relationship between cancer and methylation has been raised several times on the board, and I have addressed it in the past. In cancer cells it has been found that there is global hypomethylation (lower than normal methylation) of the DNA, with islands of hypermethylation (overrmethylation). It's also true that in cancer cells it has been found that oncogenes are hypomethylated, and thus expressible, and that tumor suppressor genes are hypermethylated, and thus "silenced." As far as I know, it is not yet understood how this comes about.

    My position on methylation is that effort should be made to return it to normal, not to over- or under-correct it. A laboratory panel is available in the U.S. and in Europe that will evaluate the status of the methylation cycle and related pathways, and I recommend that this panel be used to guide treatment. This panel is now in wide use in both the U.S. and Europe. I was told recently that the lab in the U.S. is running about 50 samples per week though this panel now.

    In the clinical study that Dr. Neil Nathan, M.D., and I presented at the IACFS/ME conference in Reno last March, we reported on use of this panel to guide the treatment of 21 patients who met the diagnostic criteria for CFS. The panel was used four times on these patients, and over the course of nine months, the methylation cycle parameters were brought to normal by the use of the methylation cycle treatment, as was the glutathione level. The patients experienced statistically significant improvement, as observed both by lab testing and in a decrease in the number and in the severity of their symptoms. The paper is available on the internet at http://aboutmecfs.org/Trt/TrtMethylStudy09.pdf for anyone who would like to read it.

    With regard to homeostasis, the purpose of this treatment is to return the body's biochemistry to its normal state of homeostasis, from the abnormal state that is present in CFS.

    I have a high regard for Dr. Jill James and have interacted with her several times over the past few years concerning autism and CFS and the apparent connection between them. I don't know the context of the remarks you referred to. Perhaps she was commenting on the use of high-dose methylcobalamin in the treatment of autism.

    In the treatment of CFS, I favor the use of hydroxocobalamin, because unlike autistic children, many adults with CFS have significant body burdens of inorganic mercury, as a result of inhaling metallic mercury vapor from amalgam fillings in their teeth. Methylcobalamin has the potential to methylate inorganic mercury and facilitate its movement into the brain, where mercury is a potent neurotoxin. Small children do not usually receive amalgam fillings. Most of the mercury in their bodies is more likely to be organic mercury, which unfortunately has already had an opportunity to enter the brain.

    I favor using only enough hydroxocobalamin to overcome the loss of B12 to reactions with toxins, so that enough remains to produce sufficient methylcobalamin to stimulate the activity of methionine synthase in the methylation cycle. In some cases the amount required can be several milligrams, depending on the degree of glutathione depletion and the body burdens of toxins in the particular case. Hydroxocobalamin has been used in dosages of this size for many years, for a variety of neurological conditions as well as for CFS, and there have been no reports of adverse effects, other than a skin rash in a very few cases.

    I continue to hear from additional physicians who have found the methylation treatment to be useful in their practices. This includes physicians specializing in Lyme disease as well as CFS. Methylation cycle treatment in autism is now widespread, both by DAN! doctors and by parents consulting with Dr. Amy Yasko. There are now over 9,000 members of Dr. Yasko's internet discussion forum.

    With regard to the prospect of a medical school or university carrying out a more controlled trial of methylation treatment for CFS, I would welcome that, and I think that the preliminary study we performed could provide a basis for applying for a grant to perform a more controlled study. Realistically, that may not happen very soon. As those of you know who have been following the federal CFS advisory committee and the CDC meetings recently, federal funding for CFS research has been going down lately. Of course, most medical research is funded by the pharmaceutical companies, but they are interested in testing only drugs on which they can get patents, thus ensuring a monopoly for a few years, so that they can set prices high and make a handsome profit for their stockholders. The methylation treatment uses targeted nutritional supplements, and these are generally not patentable, because they are found in nature, and thus have a much smaller profit margin. That's why the methylation treatment costs less than three dollars per day.

    Best regards,

    Rich
  10. frickly

    frickly New Member

    Thanks for responding to this post and clearing up some misconceptions. It is a shame that it always comes down to money. If not for this, I think we would have a cure for CFS.

    I have never been concerned about my treatment causing cancer but have, for many years, worried about the toll that my constant inflammation in my lymph nodes will take on my body. I have asked doctors on many occassions if I should worry about cancer since the lymph nodes in my neck have been swollen for years. The answer is always "No, this will not lead to cancer". Do you have any thoughts on this subject?

    Take care,
    [This Message was Edited on 06/25/2009]
  11. richvank

    richvank New Member

    Hi, frickly.

    There is not a lot of information yet about a possible connection between CFS and cancer. I think the best information is coming from the new Whittemore-Peterson Institute. As you may know, the lead researcher there is Judy Mikovits, who has a lot of experience in studying viruses and cancer and their association. I understand that she moved to this new institute at least partly because of some epidemiological evidence has come to light showing that there is a cluster of cases of an unusual form of cancer, a type of lymphoma, in the area where the Incline Village outbreak of CFS occurred in the 80s. Judy and her colleagues are bringing to bear some state-of-the-art methods to identify viruses in stored blood samples from the people who were affected there.

    There is evidence that the outbreak there in the 80s was caused by a virus, and this could be a connection to the lymphoma cases that have been identified.

    Some of this information was presented at the IACFS/ME conference in Reno last March, and I expect to see research papers coming out on this soon.

    You might be interested in reading Cort Johnson's article about this at

    http://aboutmecfs.org/Conf/IACFSME09WPI.aspx

    I hope this is helpful.

    Rich
  12. frickly

    frickly New Member

    I will check it out.
  13. richvank

    richvank New Member

    ***Hi, nofool.

    ***My responses are shown at the asterisks below:

    You wrote: "A laboratory panel is available in the U.S. and in Europe that will evaluate the status of the methylation cycle and related pathways..."

    I suspect that the test is done by non-standard labs. Am I correct? Why can't standard labs be utilized?

    ***I think it's basically a matter of economics. The business plan of standard medical labs is to offer lab tests that are conventional, are requested in high volume, and that are for the most part funded by Medicare and the insurance companies. These labs are not research-oriented, and they are not very innovative. The methylation panel is relatively new and is the product of research done by a particular small laboratory. Small labs often keep some of the procedures they have developed proprietary, in order to be able to recoup the investment they have made in developing them. If they were not able to do this, they would not put the effort and investment into developing new tests. As demand for this panel grows, and particularly if it eventually gets Medicare approval or the equivalent, the conventional medical labs may become more interested.

    Re: the study

    I checked it out. Quoting Yasko and Teitelbaum? Teitelbaum does early AM weekend infomercials for his products! He uses the term "chronic fatigue" rather than CFS. Yasko has a sell for profit site of her own.

    ***I appreciate your taking the time to read the study. Both Dr. Teitelbaum and Dr. Yasko have contributed a great deal to the treatment of CFS, and in the case of Dr. Yasko, the treatment of autism as well. Everyone has a right and a necessity to earn a living. No one is compelled to do business with either of these doctors, and both offer a great deal of information on the internet at no charge.

    The "study" is not up to par with typical med studies. What more can be said.

    ***This was a preliminary, open-label, pilot-type study. Most controlled clinical studies are preceded by a study of this type, to establish a basis for performing a more controlled study. Fundors and researchers like to be convinced that they are "betting on a sure thing" before they are willing to commit money and effort to a full-blown controlled study. This is the normal progression of things.

    ***Based on your comments about laboratory testing and research studies, my impression is that you are familiar with using the final products of scientific research (controlled clinical trials and well-established lab tests), but that you are less familiar with the processes by which research is carried out, and new developments are made. In CFS, we need new developments, because conventional testing and treatment have not been very helpful.

    You wrote:

    "In the treatment of CFS, I favor the use of hydroxocobalamin, because unlike autistic children, many adults with CFS have significant body burdens of inorganic mercury, as a result of inhaling metallic mercury vapor from amalgam fillings in their teeth."

    There's not any scientific support for the above. It is the usual alt med opinion.

    ***There is actually considerable evidence for this. I refer you to the research of Prof. Boyd Haley of the University of Kentucky, and well as the body of research conducted in Sweden. Some of the European countries have outlawed amalgam fillings based on the evidence of mercury toxicity.

    You wrote:

    "I continue to hear from additional physicians who have found the methylation treatment to be useful in their practices. This includes physicians specializing in Lyme disease as well as CFS. Methylation cycle treatment in autism is now widespread, both by DAN! doctors and by parents consulting with Dr. Amy Yasko. There are now over 9,000 members of Dr. Yasko's internet discussion forum."

    You hear from alt med physicians. Correct? Also, 9,000 members is quite small considering the number of autistic people in the USA/World.

    ***I would say that most of these physicians could be characterized as complementary physicians. They have received conventional medical training in the use of drugs, and they continue to use them in their practices when they appear to be the best option. However, they also use natural substances in their practices when they appear to be the best options.

    ***Yes, there are unfortunately many more than 9,000 people who have autism, and unfortunately many of these cases are not being effectively treated. The move toward biomedical treatment of autism does seem to be growing, though. I attended the Autism One conference in Chicago last year, and it has grown to be a very large conference. I think there are of the order of 100 presenters at these conferences now. Among them, Dr. Yasko has presented for several hours at recent conferences.

    Also, would you mind summarizing Dr. Yasko's court proceedings mentioned earlier? You don't hesitate to quote her or praise her. I find that very odd, in light of her court proceedings, all over $$$ from her sale of online products. Why isn't this disclosed?

    ***There are two sides to every story. I don't believe it is my place to discuss legal issues.

    You wrote:

    "The methylation treatment uses targeted nutritional supplements, and these are generally not patentable, because they are found in nature, and thus have a much smaller profit margin. That's why the methylation treatment costs less than three dollars per day."

    $3/ day is outlandishly high! Some of us know that the cost of the bottles and labels often far exceed the costs of the supplements inside them.

    ***Compared to the amounts of money people with CFS have spent on conventional treatments, most of which has been of limited help, I don't think this is a lot of money. The advantage of supplements, as contrasted with patented drugs, is that they are subject to market competition, which holds prices down.

    ***Best regards,

    ***Rich
  14. gapsych

    gapsych New Member


    I absolutely agree with you. While I think Rich is very dedicated, that does not mean he is right.

    Using Vitamin Diagnostics to test because it is not economically feasible for other labs to do this. Since we do not know how reliable or valid this lab is, how can you say there has been improvement.

    If the methylation cycle is so important, why only supplements to treat it?

    No disrespect Rich but the number of people improving which does not seem to be many, is not proof. I don't think we get very many posts of it helping people plus this is anecdotal.

    This could be easily tested through clinical trials. It is time to realize that testing while expensive, it absolutely imperative before a treatment is offered as science. Why is the medical community not doing this? Could it be that it is an incomplete/biased theory.

    I would think there are funds available somewhere.

    I would like to see the methylation treatment work. But so far I am not convinced.

    Nofool is not being a naysayer nor argumentative. He is just asking for the scientific bases for this treatment and has certainly done his homework.

    There are two sides to every story.

    I have also worked with Autistic children.

    Nofool, thanks for the websites. I suggest people from all perspectives read them.

    gap
  15. karinaxx

    karinaxx New Member

    i have seen and read your responses on this board over the last four years.

    Sometimes i agree with you, sometimes not.

    Sometimes i think you could profit from a few lessons in diplomacy; but hey, i am not so good at it myself .

    And sometimes i can appreciate a well argued disagreement.

    But now i am really curious: Is there any research, diagnosis, DR., treatment which you can say yes to?

    Just curious!!!!!

    k.
  16. gapsych

    gapsych New Member


    I can not speak for Nofool, but for me, there are many treatments, Dr.s, protocals, research that are based on real science. Treatments that match up with how the body REALLY works. To these, I say yes.

    As for research it has to be based on the scientific method.

    Just because some of us want science based medicine does not mean that we do not like any medicine or treatments.

    I just do not understand why people can go around bashing the medical establishment but when the alt. med. is criticized, it is arguing.

    We need to use critical thinking when evaluating different treatments.

    My two cents.

    gap




    [This Message was Edited on 06/27/2009]
  17. karinaxx

    karinaxx New Member

    Cannot argue and dont want to. I agree.

    As i said, i am just curious and especially curious about Dr. Goldsteins treatment, who is mentioned in no fools profile.

    take care Karinaxx
  18. richvank

    richvank New Member

    ***Hi, gapsycyh.

    ***My responses are at the asterisks below.


    I absolutely agree with you. While I think Rich is very dedicated, that does not mean he is right.

    ***It's nice to hear that you think I'm dedicated. You're right, dedicated people can certainly be wrong. Adolf Hitler seems to have been pretty dedicated.

    Using Vitamin Diagnostics to test because it is not economically feasible for other labs to do this. Since we do not know how reliable or valid this lab is, how can you say there has been improvement.

    ***I would just note that all labs that test human samples as a business must meet the federal CLIA standards, and are subject to annual reviews and inspections. As a researcher, I have good confidence in the reliability of the data from Vitamin Diagnostics. I've seen the results of probably about 200 of the methylation pathways panels now, and I've had an opportunity to correlate them with the condition of the patients. For about 25 people, I've seen the results of this panel four times, at three-month intervals during treatment, and the results have been consistent with what I would expect, considering their changes in condition.
    So I understand your statement that "we" do not know how reliable or valid this lab is, but I would not include myself in the "we," based on my experience with this lab. I realize that you have not had the opportunity to have the experience with this lab that I have.

    If the methylation cycle is so important, why only supplements to treat it?

    ***I assume that you mean why have drugs not been developed to treat the methylation cycle. The problem is that supplements are what's needed to restore the methylation cycle to normal operation. Most drugs actually block some part of the biochemistry to try to compensate for another part that isn't working properly. I don't think that approach will work here. The other problem with using drugs in general in CFS is that the partial methylation cycle block has a big impact on the detox system, and we rely on the detox system to clear the body of drugs. Otherwise, they can rise to toxic levels. That's why so many PWCs report problems with drugs.

    ***I think that one thing that could happen in the future is that so-called "medical foods" could be used to treat CFS. There is already a pharmaceutical company that is treating the methylation cycle with "medical foods." These are actually forms of folate and B12, just as we are using in the supplemental approach, but they have been through testing to get FDA approval as "medical foods," and of course, they cost more than the same substances as supplements. They are given by prescription.

    No disrespect Rich but the number of people improving which does not seem to be many, is not proof. I don't think we get very many posts of it helping people plus this is anecdotal.

    ***Most of the people on the methylation cycle treatment have moved to the cfs_yasko group and the new ME-CFS Methylation Cycle group. The CFS_yasko group currently has over 900 members. Of course, many of the members are "lurkers," as in all groups, but there is also a sizeable number who are on the treatment, and more starting as time goes by. There are actually quite a few reports of improvement in this group. Yes, these are individual reports, not part of a controlled clinical trial. As I wrote to nofool, we have run a preliminary open-label clinical study, which is not anecdotal, and the report on it is available on the internet for anyone who would like to read it.

    This could be easily tested through clinical trials. It is time to realize that testing while expensive, it absolutely imperative before a treatment is offered as science. Why is the medical community not doing this? Could it be that it is an incomplete/biased theory.

    ***I agree that more controlled clinical trials are needed. By the way, clinical trials are not "easy." They require a lot of planning, discipline, and work. I know how much work went into our preliminary clinical study, and I would not characterize it as "easy." It may be "easy" for someone to read the report of a clinical trial, but performing a good one is not at all "easy."

    ***Why is the "medical community" not doing this? Well, the "medical community" is primarily focused on using patented drugs. Nearly all clinical trials are funded by pharmaceutical companies. As I discussed above, drugs aren't very helpful for restoring a partially blocked methylation cycle.

    ***I would agree that our hypothesis is incomplete, and I'm continuing to work on that. I don't know what you mean by "biased." I don't have a particular bias, other than trying to understand what's not working right, and figuring out how to restore it. If I thought a drug would do that, and without causing worse problems down the line, I would be in favor of using it.

    I would think there are funds available somewhere.

    """Maybe so, and I hope to find them. If you find a source, please let me know.

    I would like to see the methylation treatment work. But so far I am not convinced.

    ***That's fair enough. If you want to read of more first-hand experiences, you might consider joining the cfs_yasko group. Or, if you haven't read the report on the clinical study that was presented at the international CFS/ME conference in March, you might want to check it out. It can be found at

    http://aboutmecfs.org/Conf/IACFSME09WPI.aspx

    Nofool is not being a naysayer nor argumentative. He is just asking for the scientific bases for this treatment and has certainly done his homework.

    There are two sides to every story.

    ***That's true.

    I have also worked with Autistic children.

    ***I feel very sorry for these kids and their families. I do think there is hope, now, though, since the work of Jill James et al. on 2004, showing that there is a partial block in the methylation cycle, and that it can be corrected. Before that, I think there was not as good a basis for biomedical intervention.

    Nofool, thanks for the websites. I suggest people from all perspectives read them.


    ***Best regards,

    ***Rich
  19. gapsych

    gapsych New Member


    While I still have a lot of questions, thank you for replying.

    gap
    [This Message was Edited on 06/28/2009]
  20. frickly

    frickly New Member

    ***I feel very sorry for these kids and their families. I do think there is hope, now, though, since the work of Jill James et al. on 2004, showing that there is a partial block in the methylation cycle, and that it can be corrected. Before that, I think there was not as good a basis for biomedical intervention.

    I also beleive there is hope for my child and I beleive there is hope for treating my CFS. This is a very emotional subject for me as my husband and I have been through alot trying to help my son with little information. Everything I have learned I have done on my own. Everything I have learned about treating my CFS I have done on my own. I wish I had a doctor that could help me but do not. What I do know is that my glutithione/ATP injections are the only thing that is keeping me going. How do I get my body to make it's own glutithione? I beleive this is the answer for me. However, I know it is not the answer for everyone. I'll stop now, had a difficult couple of days.

    "There is no medicine like hope, no incentive so great, and no tonic so powerful, as expectation of something tomorrow"
    O.S. Marden