Fibromyalgia Isn't a Real Disease

Discussion in 'Fibromyalgia Main Forum' started by cmt49829, Apr 25, 2009.

  1. cmt49829

    cmt49829 New Member

    So Says Prominent Fibromyalgia Research Doctor

    From THE FRONT PAGE of The New York Times Article
    Read the entire article at the link here:

    "Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety."

    Dr. Wolfe goes on to say, "Some of us in those days thought that we had actually identified a disease, which this clearly is not."

    "...other doctors -- including the one who wrote the 1990 paper that defined fibromyalgia but who has since changed his mind -- say that the disease does not exist and that Lyrica and the other drugs will be taken by millions of people who do not need them."

    Just when I was optimistic that the traditional medical community was finally getting the message that fibromyalgia is a very real and very serious illness, this kind of short-sighted, arrogant, and simple-minded myth raises its ugly head once again.

    This bit of news, by a prominent rheumatologist, isn't a huge surprise. When was the last time you visited your rheumatologist (after waiting months to be seen) and felt like they understood your fibromyalgia?

    And if they did believe you had fibromyalgia, were they helpful? Probably not, since their answer is to recommend more and more drugs, year end and year out. The side effects of these drugs begin to add up and pretty soon you realize your fibromyalgia symptoms aren't much better, and worse, you've got additional symptoms from all those meds.

    I've repeatedly been asked to give my opinion on the over-hyped new drug for fibromyalgia, Lyrica. I've kept relatively quiet for two reasons. One, I wanted to give Lyrica the benefit of the doubt. Unfortunately Lyrica has proven to be ineffective for the majority of my patients, as well as the fibromyalgia sufferers

    I'm in contact with around the world. Secondly, I thought at least Pfizer's multi-million dollar drug campaign would help the public understand the pain fibromyalgia patients experience day in and day out. Surely the TV and print ads would help others realize that yes there is such a thing as fibromyalgia, here are the symptoms, and this is why aunt Jane feels so miserable each day.

    Sadly, The New York Times and other print media have elected to take a different slant. Instead of helping dispel the myth that those with fibromyalgia are crazy, lazy, or depressed, they've elected to focus on the minority of doctors who think fibromyalgia isn't real.

    As I lecture and interact with doctors throughout North America, I routinely encounter doctors who don't believe fibromyalgia exists, but the number has steadily declined. But an article like this one really burns me up. You already have enough of a challenge facing you each day without having to justify to others that your illness is real.

    As I've said before to the doubting Thomas's - spend one day in the life of one of my patients and see if this fibromyalgia thing is real or not.

    I haven't had any takers yet.

    Dr. Rodger Murphree


    Dr. Rodger Murphree, 2700 Rogers Drive, Suite 204, Homewood, AL 35209, USA
  2. willruthie1965

    willruthie1965 New Member

    Thanks For posting this article. RUTHIE
  3. Debra49659

    Debra49659 New Member

    Disease, syndrome, condition, etc. I have severe Fibromyalgia. Everyday I have to deal with this pain. My pain is not anyone else pain.

    I am tired of people thinking they have all the answers...and no one else knows what they are talking about.

    Fibromyalgia is real...whether it be mild or severe. If I have to hear one more person say that what I have to deal with everyday is not real. I am really going to unload a few opinions of my own.

    Something along the line of "OMG, WTF...why are you so ignorant!!!"

    Sorry, I'm pissy today:)

  4. Shananegans

    Shananegans New Member

    The pain and fatigue is very very real but labeling everyone with Fibromyalgia is very very wrong. Something is causing the pain and fatigue and doctors need to continue looking for that something. Once someone is labeled as a Fibromyalgia patient, the doctors stop looking for other problems and start treating symptoms only.

    I was misdiagnosed with FM, I have Celiac disease. I suffered for 10 years and I didn't need to. If the doctors would have listened to the whole picture, they would have never diagnosed me with FM and this happens to too many people.

    FM IS a waste basket term. It basically states "we have no idea what's really wrong with you and we don't care enough to find out, so here's a diagnosis, now go home and prepare to lose everything. Thanks and have a nice day." Sorry if I upset people but you can't tell me nothing is causing the pain everyone is suffering and that's all a diagnosis of FM is, telling people nothing is wrong but will give you pain meds.
  5. heapsreal

    heapsreal New Member

    although i dont take lyrica regularly, only when pain starts to get to me and unreleaved by otc painkillers and heat packs, i find lyrica helps quite a bit, maybe taking it irregularly reduces tolerence to the medication making it more effective when i do use it, and it also helps improve the quality of my sleep which is usually poor in people with cfs/fibro. my two cents worth anyway.
  6. cmt49829

    cmt49829 New Member

    did tons of test and moreso eliminated everything else before DXing me with FM.

    they ruled out other things then did the normal pain pt. etc, testing for fibro.
  7. cmt49829

    cmt49829 New Member

    FM was listed as a symdrome for many many years, just a couple years ago the CDC officially included FM in the disease catagory.
    to me, I dont really care what anyone calls it. but;
    for many the fact that it is now called a disease is helpful to them in the aspect of ins and such.
    calling it a syndrome to me personally sounds like your saying it is just something in your head.

    and we know it is NOT imaginary.
  8. TeaBisqit

    TeaBisqit Member

    The pain and fatigue and everything else is real. And they need to do real research and find out why we hurt.

    There are a million reasons why we could be hurting. Hormone imbalances, vitamin and mineral deficiencies because our foods are over processed, toxins, molds. The list goes on.

    I think the main problem is that too many doctors will give the diagnosis to anyone with an ache or pain. I've seen this a million times. There are people who really have nothing wrong with them, but they are tired and achey after working a fifteen hour shift, so they go to the doc and get told, "Oh, you have fibromyalgia." But they don't. And that's where the real problem is. Alot of docs overdiagnose it and don't give it to the people who really have it.
  9. Debra49659

    Debra49659 New Member's me the cranky one. But, IMHO FM has been around since the is not a new disorder. FM is a real disorder.

    However, I agree that many doctors are now diagnosing FM because they don't know what is wrong. So in that aspect we agree. I think it is horrible what happened to you. Someone definitely dropped the ball in your cause.

    In my case I have FM..along with some other dxs; some related some not. Please do not dismiss FM on the FM board. I mean no disrespect:)

  10. moodymom72

    moodymom72 New Member

    I am a 36 year old woman who was just diagnosed about six months ago with fibro and ME/CFS. When my doctor told me this I told her that it sounded like she just didn't know what was wrong with me and that this was a way of defining it. I have since realize how real it is. I have researched web site after web site and found that this is truly a real condition.
    I went from being a successful business woman with a spotless house, kids, car, dogs etc. To barely doing my daily activities. I feel guilty because my kids will make fun of me if I go to bed at 8:00 after working a 12 hour day. My husband feels neglected. I am unable to do my job at a level that I used to. I visited my doctor again today in tears because I am to the point of quiting my job so that I don't lose my husband or family. I am torn. I know my husband is afraid of me quiting my job because we need the money and the insurance but there are days that I can't even get out of bed. I used to dress for success but now I pull my hair in a ponytail and rarely iron my clothes. This is not the me that I used to be.
    I have a great doctor who understands this condition. She sat on the board at Harvard and did a lot of research on the condition. After blood tests she was able to explain everything to me. She has made some great head way for me and suggestions on how to improve my life. I am currently taking Baclofen for sleep. I take this one hour before bed and it has helped. She has put me on a strict diet. One that is similar to a diabetic diet. This helps as well if I stick with it. Now i have to choose what is more important. My health and family or my job. No one seems to understand. Not my boss, my husband, my kids or friends and family.
    My doctor suggested this site and I wish I could get everyone to read what we go through. Thanks to everyone who shares on here and thanks to Dr's who believe in us.

  11. gapsych

    gapsych New Member

    The American College of Rheumatology recognizes FM as a legitimate syndrome.

    It is not really a waste basket disease as much as CFS, at least the way CFS is defined now.

    While the pain of FM may differ among people who have it, there is a distinct pattern,. which includes a genetic susceptibility plus a stressor. A stressor can be an accident, an illness, severe stress.

    The diagnosis of FM is more definitive today than in the past.

    Yeah we still have a long ways to go, but some progress has been made at least in diagnostic terms.


    [This Message was Edited on 04/25/2009]
  12. blueeyedgrl73

    blueeyedgrl73 New Member

    well first off the term fibromyalgia is really describing a symptom meaning : pain in fibrous tissues. I had fibro symptoms for two years....the severe fatigue, achiness, flu-like symptoms, etc.

    all my labs were normal for two years. Then my aches and pain localized to my joints....had more tests which came back suspicious for RA. After further tests and changing docs i was diagnosed with RA and now am on the appropriate meds. The "fibro" meds did not help!

    I do believe that people suffer every day from fibro symptoms but I believe that these symptoms are indicative of something else that hasnt shown up yet like RA, lupus, MS, lyme, etc.

    I also agree that doctors are too quick to diagnose fibro instead of following up on other illnesses or diseases or syndromes that might come about. This has been my experience and of course I could be wrong (wouldnt be the first time hehe) but even the so-called experts cant figure it out either it seems. I think ppl with fibro symptoms need to be helped for relief of their is hard getting through each day with these. I hope that those with these symptoms will also get further testing periodically for other conditions. just my two cents :) Blue
  13. Shananegans

    Shananegans New Member

    I believe it is real. I know there are people suffering, I was one of them whether is was fibro or not and I met many people just like me, suffering with no answers.

    I just think it is a way over used diagnosis. My symptoms were pain, especially in legs and arms; extreme fatigue, to the point of narcolepsy; muscle spasms; numbness; tingling; diarrhea; constipation; low b12 and magnesium; nausea; RLS; brain fog; anxiety... and the list goes on and on and I dealt with all but the pain and fatigue most of my life. The pain and fatigue started when I was 19 (10 years ago). No one ever looked at another option. By the time I was 20 I was told I had FM and then no doctor would even look further.

    It's real. Everything we experience is real but most of us do not have FM, we have thyroid problems, malnutrition problems, allergies, folic acid issues and on and on... then we end up with FM because we go untreated for our issues and our bodies deteriorate.

    It will take a long time for me to completely heal and it's all because this is an over used diagnosis. And for the people that really do have Fibromyalgia, they get ill treated because well... everyone else has it to. (Not really but that's what it is coming down to).

    Now I will use my time to educate people because of what happened to me.
  14. richvank

    richvank New Member

    Hi, Angela.

    I'm a CFS researcher, and I want to tell you about a test and a treatment that are helping many people with CFS toward recovery. I'm not financially involved with either the test or the treatment. It sounds as though you have a doctor who might be open to learning about these new developments, which were just reported at the international CFS conference in Reno, NV, last month. A recent clinical study on 30 women with CFS and fibromyalgia produced very positive results.

    The test is the Vitamin Diagnostics, Inc., methylation pathways panel. Contact information and a discussion of interpretation of the results are pasted below.

    The treatment is the simplified treatment approach for lifting the methylation cycle block. A discussion of it is also pasted below. (There has been one change in the protocol recently: Actifolate has been substituted for Intrinsi/B12/folate, because Metagenics changed the formulation of latter.) I encourage people whose methylation pathways panel shows that they have a partial block in their methylation cycle and glutathione depletion to consider this treatment, together with their physicians.

    If you or your doctor would like more information, please email me at

    richvank at aol dot com

    and I will send you the recent report on the clinical study of this treatment, as well as papers describing the theoretical background behind it.

    Best regards,

    Rich Van Konynenburg

    Methylation Pathways Panel

    This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

    The panel costs $300 and requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on your clinician’s letterhead.

    Available from:

    Vitamin Diagnostics, Inc.
    Rt. 35 & Industrial Drive
    Cliffwood Beach, NJ 07735
    Phone:+1 (732) 583-7773
    Fax: +1 (732) 583-7774)

    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., Eastern time)

    Dr. Audhya is willing to help clinicians with interpretation of the panel by phone, or you can interpret it yourself using the comments below:

    Several people have asked for help in interpreting the results of
    their Vitamin Diagnostics, Inc., methylation pathway panels. Here are my
    suggestions for doing so. They are based on my study of the
    biochemistry involved, on my own experience with interpreting more
    than 120 of these panel results to date, and on discussion of some of
    the issues with Tapan Audhya, Ph.D., who is the director of the
    Vitamin Diagnostics lab.

    The panel consists of measurement of two forms of glutathione
    (reduced and oxidized), adenosine, S-adenosylmethionine (SAM) , S-
    adenosylhomocysteine (SAH), and seven folic acid derivatives or

    According to Dr. Audhya, the reference ranges for each of these
    metabolites was derived from measurements on at least 120 healthy
    male and female volunteer medical students from ages 20 to 40, non-
    smoking, and with no known chronic diseases. The reference ranges
    extend to plus and minus two standard deviations from the mean of
    these measurements.

    Glutathione: This is a measurement of the concentration of the
    reduced (active) form of glutathione (abbreviated GSH) in the blood
    plasma. From what I've seen, most people with chronic fatigue
    syndrome (PWCs) have values below the reference range. This means
    that they are suffering from glutathione depletion. As they undergo
    the simplified treatment approach to lift the methylation cycle
    block, this value usually rises into the normal range over a period
    of months. I believe that this is very important, because if
    glutathione is low, vitamin B12 is likely unprotected and reacts with toxins
    that build up in the absence of sufficient glutathione to take them
    out. Vitamin B12 is thus “hijacked,” and not enough of it is able to
    convert to methylcobalamin, which is what the methylation cycle needs
    in order to function normally. Also, many of the abnormalities and
    symptoms in CFS can be traced to glutathione depletion.

    Glutathione (oxidized): This is a measurement of the concentration
    of the oxidized form of glutathione (abbreviated GSSG) in the blood
    plasma. In many (but not all) PWCs, it is elevated above the normal
    range, and this represents oxidative stress.

    Adenosine: This is a measure of the concentration of adenosine in the
    blood plasma. Adenosine is a product of the reaction that converts
    SAH to homocysteine. In some PWCs it is high, in some it is low, and
    in some it is in the reference range. I don't yet understand what
    controls the adenosine level, and I suspect there is more than one
    factor involved. In most PWCs who started with abnormal values, the
    adenosine level appears to be moving into the reference range with
    methylation cycle treatment, but more data are needed.

    S-adenosymethionine (RBC) (SAM): This is a measure of the
    concentration of SAM in the red blood cells. Most PWCs have values
    below the reference range, and treatment raises the value. S-
    adenosylmethionine is the main supplier of methyl groups in the body,
    and many biochemical reactions depend on it for their methyl
    groups. A low value for SAM represents low methylation capacity, and
    in CFS, it appears to result from a partial block at the enzyme methionine
    synthase. Many of the abnormalities in CFS can be tied to lack of
    sufficient methyation capacity.

    S-adenosylhomocysteine (RBC) (SAH): This is a measure of the
    concentration of SAH in the red blood cells. In CFS, its value
    ranges from below the reference range, to within the reference range,
    to above the reference range. Values appear to be converging toward
    the reference range with treatment. SAH is the product of reactions
    in which SAM donates methyl groups to other molecules.

    Sum of SAM and SAH: When the sum of SAM and SAH is below 268
    micromoles per deciliter, it appears to suggest the presence of
    upregulating polymorphisms in the cystathione beta synthase (CBS)
    enzyme, though this may not be true in every case.

    Ratio of SAM to SAH: A ratio less than about 4.5 also represents low
    methylation capacity. Both the concentration of SAM and the ratio of
    concentrations of SAM to SAH are important in determining the
    methylation capacity.

    5-CH3-THF: This is a measure of the concentration of 5-methyl
    tetrahydrofolate in the blood plasma. It is normally the most
    abundant form of folate in the blood plasma. It is the form that
    serves as a reactant for the enzyme methionine synthase, and is thus
    the most important form for the methylation cycle. Many PWCs have a
    low value, consistent with a partial block in the methylation cycle.
    The simplified treatment approach includes FolaPro, which is
    commercially produced 5-CH3-THF, so that when this treatment is used,
    this value rises in nearly every PWC. If the concentration of 5-CH3-
    THF is within the reference range, but either SAM or the ratio of SAM
    to SAH is below the reference values, it suggests that there is a
    partial methylation cycle block and that it is caused by
    inavailability of sufficient bioactive B12, rather than
    inavailability of sufficient folate. I have seen this frequently,
    and I think it demonstrates that the “hijacking” of B12 is the root
    cause of most cases of partial methylation cycle block. Usually
    glutathione is low in these cases, which is consistent with lack of
    protection for B12, as well as with toxin buildup.

    10-Formyl-THF: This is a measure of the concentration of 10-formyl
    tetrahydrofolate in the blood plasma. It is usually on the low side in PWCs.
    This form of folate is involved in reactions to form purines, which
    form part of RNA and DNA as well as ATP.

    5-Formyl-THF: This is a measure of the concentration of 5-formyl
    tetrahydrofolate (also called folinic acid) in the blood plasma.
    Most but not all PWCs have a value on the low side. This form is not used
    directly as a substrate in one-carbon transfer reactions, but it can
    be converted into other forms of folate. It is one of the
    supplements in the simplified treatment approach, which helps to
    build up various other forms of folate.

    THF: This is a measure of the concentration of tetrahydrofolate in
    the blood plasma. In PWCs it is lower than the mean normal value of 3.7
    nanomoles per liter in most but not all PWCs. This is the
    fundamental chemically reduced form of folate from which several
    other reduced folate forms are made. The supplement folic acid is
    converted into THF by two sequential reactions catalyzed by
    dihydrofolate reductase (DHFR). THF is also a product of the
    reaction of the methionine synthase enzyme, and it is a reactant in
    the reaction that converts formiminoglutamate (figlu) into
    glutamate. If figlu is high in the Genova Diagnostics Metabolic
    Analysis Profile, it indicates that THF is low.

    Folic acid: This is a measure of the concentration of folic acid in
    the blood plasma. Low values suggest folic acid deficiency in the
    current diet. High values are sometimes associated with inability to
    convert folic acid into other forms of folate, such as because of
    polymorphisms in the DHFR enzyme. They may also be due to high
    supplementation of folic acid.

    Folinic acid (WB): This is a measure of the concentration of folinic
    acid in the whole blood. See comments on 5-formyl-THF above. It
    usually tracks with the plasma 5-formyl-THF concentration.

    Folic acid (RBC): This is a measure of the concentration of folic
    acid in the red blood cells. The red blood cells import folic acid
    when they are initially being formed, but during most of their
    approximately four-month life, they do not normally import, export, or use
    it. They simply serve as reservoirs for it, giving it up when they
    are broken down. Many PWCs have low values. This can be
    caused by a low folic acid status in the diet over the previous few
    months, since the population of RBCs at any time has ages ranging
    from zero to about four months. However, in CFS it can also be
    caused by damage to the cell membranes, which allows folic acid to
    leak out of the cells. Dr. Audhya reports that treatment with omega-
    3 fatty acids can raise this value over time.

    July 18, 2007

    Simplified Treatment Approach Based on the Glutathione Depletion-Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome (CFS)

    Rich Van Konynenburg, Ph.D.

    I first want to note that I am a researcher, not a clinician, and that what I have to say here should not be interpreted as medical advice.

    In January, 2007, in an effort to shed light on the validity of the Glutathione Depletion-Methylation Cycle Block (GD-MCB) Pathogenesis Hypothesis for Chronic Fatigue Syndrome (CFS), and to help clinicians to develop a practical treatment based on this Hypothesis, I suggested a simplified treatment approach. This approach is designed to lift the hypothesized methylation cycle block and to restore glutathione levels to normal. It was derived from a complete treatment program developed by Dr. Amy Yasko, N.D., Ph.D., for autism and other disorders that are also thought to involve methylation cycle block and glutathione depletion.

    A fairly large number of people with chronic fatigue syndrome (PWCs) have since voluntarily chosen to try this treatment approach, many with the help of their physicians. It now appears to be working well for many of these PWCs, but some serious adverse effects have also been reported in a few cases. Controlled testing of this treatment approach has not yet been done, but early results from these volunteers suggest that this would not only be worthwhile in view of indications of the efficacy of this approach, but also necessary to ensure its safe application.

    I would like to describe the history of the Glutathione Depletion-Methylation Cycle Block (GD-MCB) Hypothesis and the simplified treatment approach that is based upon it, and point out what I think the early treatment results mean with regard to this Hypothesis. But before I do so, I want to emphasize the following cautionary statements:

    While in the past I have stated that PWCs should cooperate with their physicians in trying the simplified treatment approach, as a result of experiences with this treatment approach that have been reported to me recently, I have concluded that it must be entered upon only under the supervision of a licensed physician, to make sure that if there are individual issues that arise, they can be taken care of immediately. The treatment approach itself consists only of nonprescription nutritional supplements that are normally found naturally in the body and are necessary for normal biochemistry to take place. It would thus appear to be fairly benign on its surface. However, it is now clear to me that restarting the methylation cycle after it has been blocked for extended periods, particularly in those PWCs whose general health has become quite debilitated, or those who have certain respiratory, cardiac, endocrine or autoimmune conditions, can present some serious challenges and hazards. I suspect that there is still much more to be learned about possible adverse effects of applying this treatment approach among the very heterogeneous CFS population, and this work properly lies in the province of clinicians. I believe that I have now carried this work as far as a nonclinical researcher can appropriately carry it. I am hopeful that clinicians will apply and test this treatment approach in order to learn how it may be safely, effectively, and practically utilized to treat PWCs, and it appears that this is now beginning to occur.

    As some readers will probably be aware, I presented a poster paper describing the above-mentioned Hypothesis at the most recent IACFS conference in Florida last January. It can be found on the internet on Cort Johnson’s website:

    This Hypothesis has not yet been published in the peer-reviewed literature. My emphasis up to now has instead been upon addressing questions that remained to be answered before this Hypothesis could be considered for clinical testing and application in the form of a practical treatment approach.

    The history of the development of this Hypothesis is as follows:

    In 1999, I first learned from two public talks presented by Dr. Paul Cheney that many PWCs are depleted in glutathione, and that taking steps to build glutathione can be helpful to many. Dr. Derek Enlander has since reported to me that he began injecting glutathione as part of a complex into CFS patients as early as 1991. I also found that Dr. Patricia Salvato had reported in early 1998 on her use of intramuscular injection of glutathione in 276 patients. Over the years, quite a few CFS doctors have incorporated means of building glutathione into their protocols, either by administration of glutathione itself by various routes, or by oral supplementation with glutathione precursors, such as whey protein products.

    What is glutathione, and what does it do?

    Glutathione is technically a tripeptide, which can be thought of as being like a very small protein, as it is made up of only three amino acids (while proteins are made up of many more). It is present naturally in every cell of the body, as well as in the blood, the bile and the fluid lining the lungs. The liver is normally the main producer of glutathione in the body. Glutathione plays many important roles in the body. Probably the best known are its protection against oxidative stress produced by oxidizing free radicals and other reactive oxygen species, its support for the immune system, and its role in removing a variety of toxic substances from the body.

    When glutathione becomes somewhat depleted, as it does in many cases of CFS, its normal functions are simply not performed well. Many of the symptoms of CFS as well as observed abnormal results on specialized lab tests can be traced directly to glutathione depletion, as I described in an earlier AACFS poster paper in 2004. It can be found on Cort Johnson’s website:

    As I noted in that paper, while direct efforts to build glutathione are helpful to many PWCs, for most they provide only temporary improvement and do not result in permanent restoration of glutathione levels or a cure for CFS. I suspected that a vicious circle mechanism must be involved in holding down the glutathione levels in CFS.

    Then, later in 2004, an important paper was published involving research into autism by S. Jill James and her coworkers: “Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism”
    (Am J Clin Nutr. 2004 Dec;80(6):1611-7). The study they reported showed that glutathione is depleted also in autism, and that this depletion is associated with a block in what is known as the methylation cycle (or methionine cycle).

    Before discussing this further, I want to address the question “What is the methylation cycle, and what does it do?”

    The methylation cycle is part of the basic biochemistry of the body, and is believed to operate in every cell. This cycle includes the amino acid methionine as well as S-adenosylmethionine (SAMe, used as a supplement by some PWCs), S-adenosylhomocysteine, and homocysteine. Some homocysteine is converted back to methionine, thus completing the cycle. There are two parallel pathways from homocysteine to methionine. They are the methionine synthase pathway and the BHMT (betaine homocysteine methionine transferase) pathway. The methylation cycle is directly linked to the folate metabolism and to the transsulfuration pathway.

    The methylation cycle performs many vital roles in the body. First, by means of SAMe, it supplies methyl (CH3) groups to many different biochemical reactions. Some of them produce substances such as coenzyme Q-10 and carnitine, which have been found to be depleted in many PWCs. Methylation also plays an important role in “silencing” certain DNA to prevent its expression, and in producing myelin for the brain and nervous system.

    The methylation cycle also controls the body’s response to oxidative stress, by governing how much homocysteine is diverted into the transsulfuration pathway, which contributes to determining the rate of synthesis of glutathione.

    A third important role of the methylation cycle is to control the overall sulfur metabolism of the body. In this role, besides controlling glutathione synthesis, it exerts control over synthesis of several other important substances, including cysteine, taurine and sulfate.

    When the methylation cycle is blocked at the enzyme methionine synthase, these important roles are not carried out properly. In addition, a methylation cycle block necessarily involves a block in the folate metabolism, to which it is intimately linked, and this interferes with synthesis of new DNA and RNA, among other important effects.

    Two of the most significant effects of a methylation cycle block are that neither the immune system nor the detox system can operate properly. If the methylation cycle remains blocked for an extended period of time, infections and toxins can be expected to build up in the body.

    After I read the paper by S. Jill James and her coworkers (referred to above), I began to suspect that the genetic factors and biochemical mechanism they had found in autism are the same or similar to those important in CFS. A block earlier than glutathione in the sulfur metabolism, at the methylation cycle, could explain the persistent glutathione depletion in CFS. It began to dawn on me that other aspects of CFS that did not appear to be explained by glutathione depletion per se could be explained by a methylation cycle block.

    It was difficult for me initially to believe that there was a connection between autism and CFS, given the profoundly different symptoms and different affected population groups (primarily boys in autism, compared to primarily adult women in CFS). However, I knew of others who had publicly suggested such a connection in the past (Dr. Michael Goldberg in the U.S. and Prof. Malcolm Hooper in the UK), and this new study seemed to provide more detailed evidence of this connection at the genetic and biochemical levels.

    I began to look into autism in more detail, and I attended the Long Beach conference of the Defeat Autism Now! (DAN!) project in October of 2005. The more I learned about autism, the more I became convinced that we are dealing in CFS with many of the same issues at the genetic and biochemical levels. The book by Drs. Jon Pangborn and Sidney Baker entitled “Autism: Effective Biomedical Treatments” (Autism Research Institute, September, 2005) provides excellent explanations of the biochemistry of autism, and the parallels with CFS can be seen there.

    I want to emphasize that I did not develop the Glutathione Depletion--Methylation Cycle Block Hypothesis out of thin air. The autism researchers had already provided a convincing basis for this model in that disorder. S. Jill James and coworkers did much of the clinical work that underlies it. Richard Deth and his coworkers had worked out much of the theory of the methylation cycle block and had applied it to autism. Professors James and Deth had been presenting talks on their work at autism conferences. The physicians in the DAN! project (as well as Dr. Amy Yasko, though I had not yet learned of her work when I began to understand the importance of the methylation cycle block) had already been treating autism cases by measures intended to lift the methylation cycle block. What I did was to apply the results of their work to CFS, and to present a detailed biochemical and symptomological case to support the proposition that this model also applies to CFS.

    What is the essence of the Glutathione Depletion-Methylation Cycle Block Hypothesis for the Pathogenesis of CFS?

    This hypothesis proposes first that in order to develop CFS, a person must have inherited genetic variations (also called SNPs or single-nucleotide polymorphisms) in a combination of certain genes that code for enzymes and other proteins associated with the methylation cycle and related pathways.

    The hypothesis further proposes that the person must also be subjected to some combination of a variety of long-term physical, chemical, biological or psychological/emotional stressors that lowers glutathione levels to the point that a block occurs in the enzyme methionine synthase in the methylation cycle, in response to the oxidative stress that is inherent in glutathione depletion. The formation of this block is aided by the presence of the inherited genetic polymorphisms. This lowering of glutathione levels also simultaneously removes the normal protection that glutathione provides to vitamin B12 and allows the accumulation in the body of toxins that can interfere with the utilization of vitamin B12, mercury perhaps being the dominant one.

    This hypothesis further proposes that the result of the above is that the level of methylcobalamin is held too low to support the methionine synthase reaction, and it therefore becomes chronically blocked. This produces a vicious circle mechanism that causes CFS to become a chronic condition.

    Finally, this hypothesis proposes that all the features of CFS can be shown to originate from this root cause. While I have not yet demonstrated this for every feature of CFS, the first paper cited in this article explains a large number of them in detail on this basis. Previous treatments for CFS have dealt with downstream issues in the pathogenesis, but they have not completely addressed this root cause, and, in my opinion, that is why we have not seen many completely cured CFS cases up to now. Note that when I refer to cured cases, I do not mean that the genetic predisposition has been removed, but that the PWCs are healthy from the symptomatic point of view.

    As I became more convinced of the parallels between autism and CFS, I began to point out this connection to some clinicians directly and to others via the internet, as well as to PWCs in internet groups, and I began encouraging them to consider the treatments that were being used by the Defeat Autism Now! project to treat autism, focusing on unblocking the methylation cycle. A small number of PWCs tried this approach, and while some initial benefits were observed from this, it did not seem to be an effective approach over the long term, at least in the way I was suggesting that it be applied.
    I then learned of the work of Dr. Amy Yasko, N.D., Ph.D. in autism. I studied her materials, including the book written by her and Dr. Garry Gordon entitled “The Puzzle of Autism,” joined her discussion forum at
    and eventually attended her teaching seminar in Boston in October of 2006. After considering all of this, I concluded that it was likely that her treatment approach could help many PWCs, so I decided to emphasize it. An important feature of her work is her effort to tie the genetics of individuals to the biochemistry and to do tailored treatment based on genetics, again directed toward correcting the methylation cycle block, but also incorporating support for a variety of body systems and organs. I also learned that Dr. Yasko had had some experience in using her approach in cases of CFS as well as a variety of adult neurological disorders, but that she was currently focusing primarily on autism.

    I wrote a short article pointing out the connection I was seeing between autism and CFS and pointing to these treatments, and it was published in the October 2006 issue of the Townsend Letter. This can be found at the following url:

    Quite a few PWCs acted on my suggestion to try Dr. Yasko’s full treatment approach, and they are currently continuing with it. Many of them participate in the Yahoo cfs_yasko internet group, a group that was specifically formed for them, which can be found at

    Most of them are currently in the first step of this treatment approach, and they are generally reporting that this treatment is producing considerable detoxification of their bodies, as monitored by urine testing. The full Yasko treatment approach involves detailed genetic and biochemical testing, and is rather expensive and complex. While some PWCs are in a position to pursue this treatment and appear to be doing so successfully, it seemed to me that there are many others for whom this approach is beyond reach, either for economic or cognitive reasons or both. Practicing physicians have generally also found this treatment to be somewhat cumbersome to incorporate into their practices because of the complexity and the considerable time and expense required to tailor the treatment to each individual patient.

    In response to these issues and to requests from clinicians for a written description of practical CFS treatment based on this hypothesis, I wrote an article that outlined the full Yasko treatment approach, but also described a simplified treatment approach that incorporated nutritional supplements that form the core of Dr. Yasko's so-called "step 2." This is the step in her treatment program that involves actually lifting the block in the methylation cycle. This article can be found on Cort Johnson’s website:

    When I proposed this approach, I did not know what fraction of the PWC population would be able to tolerate the resulting die-off of pathogens and mobilization of toxins that would result from the consequent ramp-up of the immune system and the detox system after they had been dysfunctional for such long times during the long illness duration of many PWCs. As can be seen in the above-cited article, I was not very optimistic. However, I still thought it was worth a try, since the existing full Yasko approach did not seem to have the characteristics necessary for wide use in the CFS community, and it appeared that lifting the methylation cycle block was the key to recovery for many PWCs. With the help of a woman (name omitted to protect her privacy) who is currently receiving the full Yasko treatment herself, I selected a basic set of seven supplements from Dr. Yasko's step 2, as discussed in the above-mentioned article.

    After this article was presented on the internet, another woman (name omitted to protect privacy) decided to try this simplified treatment approach. As a result of benefits that occurred almost immediately, she reported her experience on the CFS discussion board. In response to her reports, others began to try this approach. This began in February of 2007, and the number of people on this treatment has continued to grow, the longest duration of treatment now being somewhat more than four months, ranging down to some as short as a few days.

    As experience has been gained, I have shortened the initial list of seven supplements in the suggested simplified treatment approach to five, as described below. The cost of the basic five supplements is somewhat more that two dollars per day.

    After suggesting this treatment approach, I initially attempted to maintain a list of those who were trying it, based on reports I received from physicians and individual PWCs. However, when the number of people I was aware of grew past 60, I no longer felt that I could maintain a complete count. Many have been reporting their progress periodically to the ImmuneSupport board, and a new Yahoo group also has been established recently for PWCs trying this approach, at the following url:

    I will now describe the current version of the simplified treatment approach based on the Glutathione Depletion--Methylation Cycle Block Hypothesis.

    All the supplements used in this approach can be obtained from the site, or all but the Complete Vitamin and Neurological Health Formula can be obtained elsewhere. Please note that I have no financial interest in any of the supplements that I have suggested in the simplified treatment approach.

    As I mentioned above, these supplements and dosages have been selected by Dr. Amy Yasko as part of her complete treatment approach, as described in her book "The Puzzle of Autism." Substitutions or changes in dosages may not have the same effect as the combination of supplements and dosages suggested, although it is wise to start with smaller dosages than those given below, and it is also wise to start with one supplement at a time and work up to the total of five supplements, to test carefully for adverse effects. It will take somewhat longer to reach the suggested combination and dosages by this route, but early experience has shown that this is prudent.

    As I also mentioned above, this treatment approach should be attempted only under the supervision of a licensed physician, so that any individual issues that arise can be properly dealt with. It's important to "listen to one’s body" when doing this treatment. If the detox becomes too intense to tolerate, or if significant adverse effects appear, as described below, the supplements should be discontinued, and the situation should be evaluated immediately by a licensed physician. This treatment will produce die-off and detox symptoms as the immune system and detox system come back to normal operation and begin ridding the body of accumulated infections and toxins. This appears to be inevitable, if health is to be restored. It may require considerable judgment and clinical experience on the part of the physician to distinguish between inevitable die-off and detox symptoms and possible adverse effects.

    While die-off and detox symptoms are occurring, there will also likely be improvement in CFS symptoms over time. The intensity of the expected die-off and detox symptoms can be decreased by lowering the dosages of the supplements. These symptoms probably result from the body’s limited rates of excretion of toxins. If toxins are mobilized more rapidly than they can be excreted, their levels will rise in the blood, and it is likely that this will produce more severe die-off and detox symptoms. By lowering the dosages, and thus slowing the rate of mobilization of toxins, their levels in the blood can be lowered, thus ameliorating the symptoms.

    The temptation to try to get better faster by increasing the dosages suggested by Dr. Yasko must be resisted. In particular, the suggested dosages for the FolaPro and the Intrinsi/B12/folate supplements should not be exceeded. Some who have done this have experienced very unpleasant levels of detox symptoms that had momentum and did not decrease rapidly when the supplements were stopped.

    As improvements in energy level and cognition occur, it is tempting for PWCs to overdo activities, which, early in the treatment, can still result in “crashing.” It is wise to resist this temptation as well, because complete recovery will not occur overnight with this treatment approach.

    I am not aware of negative interactions between the five basic supplements and prescription medications used by physicians in treating CFS. However, this treatment approach should not be attempted without considering together with a licensed physician possible interactions between the supplements included in it and any prescription medications that are being taken. This is particularly important if addition of SAMe to the basic five supplements is contemplated.

    When this treatment approach is used together with prescription medications, a licensed physician must be consulted before discontinuing any prescription medications. Some of them can cause very serious withdrawal symptoms if stopped too abruptly.

    If this treatment approach is begun by a PWC who is taking a thyroid hormone supplement for a hypothyroid condition, the PWC and the supervising physician should be alert to the possibility that HYPERthyroid symptoms, such as palpitations and sweats, can occur, even very soon after starting this treatment. The physician should be consulted about possibly adjusting or eliminating the thyroid hormone supplementation if this occurs.

    Here are the five supplements, as found in Dr. Yasko’s book “The Puzzle of Autism,” (p. 49) and as described in detail on her website :

    1. One-quarter tablet (200 micrograms) Folapro (Folapro is 5-methyl tetrahydrofolate, an active form of folate, which is sold by Metagenics with a license from Merck, which holds the patent on synthesis).

    2. One-quarter tablet Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, also known as folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor)

    3. Up to two tablets (It’s best to start with one-quarter tablet and work up as tolerated) Complete Vitamin and Ultra-Antioxidant Neurological Health Formula from Holistic Health Consultants (This is a multivitamin, multimineral supplement with some additional ingredients. It does not contain iron or copper, and it has a high ratio of magnesium to calcium. It contains antioxidants, some trimethylglycine, some nucleotides, and several supplements to support the sulfur metabolism.)

    4. One softgel capsule Phosphatidyl Serine Complex (This includes the phospholipids and some fatty acids)

    5. One sublingual lozenge Perque B12 (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract)

    The first two supplement tablets are difficult to break into quarters. One of the PWCs who is following the simplified treatment approach has suggested that an alternative approach is to crush them into powders, mix the powders together, and divide the powders into quarters using a knife or single-edged razor blade and a flat surface. The powders can be taken orally with water, with or without food, and do not taste bad.

    Some people have asked what time of the day to take the supplements. A few have reported that the supplements make them sleepy, so they take them at bedtime. If this is not an issue, they can be taken at any time of the day, with or without food.

    Since some questions have been asked about which components of this treatment approach are essential, and since some PWCs appear to be taking augmented versions of the simplified GD-MCB treatment approach that I wrote about in my January treatment paper (cited above), I want to offer some comments to help PWCs and their physicians to evaluate which supplements to include in treatment.

    FolaPro--This is included because many PWCs have a genetic polymorphism in their MTHFR (methylene tetrahydrofolate reductase) enzyme that affects the production of 5-methyltetrahydrofolate (which is identical to the product FolaPro). This form of folate is the one used by the methionine synthase enzyme, which is the enzyme that appears to be blocked in many cases of CFS. If PWCs were to have their genetics characterized, as in the full Yasko approach, they would know for sure whether they needed this supplement, but in the simplified approach I suggest simply giving it to everyone. This should not present problems, because the total folate dose, including the FolaPro and the folates in the Intrinsi/B12/folate supplement, amounts to 400 micrograms per day, which is within the upper limit for folate supplementation for adults and for children four years of age and older, as recommended by the Institute for Medicine of the U.S. National Academy of Sciences.

    Intrinsi/B12/folate--This supplement contains three forms of folate--FolaPro, folinic acid (identical to the drug leucovorin) and folic acid (the most common commercial folate supplement). It also has some cyanocobalamin (the most common commercial vitamin B12 supplement) and some intrinsic factor (identical to that normally secreted by the stomach to enable vitamin B12 absorption by the gut) as well as some other things. The folinic acid is helpful because some people can't use ordinary folic acid well, as a result of genetic issues. Also, this helps to supply forms of folate that will make up for the low tetrahydrofolate resulting from the block in methionine synthase, until this is corrected. This enzyme normally converts 5-methytetrahydrofolate to tetrahydrofolate, which is needed in other reactions. This supplement also has some intrinsic factor and some cyano-B12 to help those who have a type of pernicious anemia that results from low production of intrinsic factor in the stomach and which prevents them from absorbing B12 in the gut. Vitamin B12 is needed by the enzyme methionine synthase, in the form of methylcobalamin, but this supplement has cyanocobalamin, which must be converted in the body by glutathione and SAMe to form methylcobalamin. As glutathione and SAMe come up, this should become more effective.

    Complete Vitamin and Ultra-Antioxidant Neurological Health Formula--This is Dr. Amy Yasko's basic high-potency general nutritional supplement. This is a general foundation for the biochemistry of the body. I suspect that this supplement is better for PWCs trying the simplified treatment approach than other high-potency general nutritional supplements, because it has particular things needed for dealing with a methylation cycle block, including some TMG and sulfur metabolism supplements as well as nucleotides. It is also high in magnesium and low in calcium, and has no iron or copper. As far as I know, there are no other supplements with all these characteristics. I therefore believe that this supplement is important for use in the treatment approach. The TMG helps to stimulate the BHMT pathway in the methylation cycle, and that helps to build SAMe, which is needed by the parallel methionine synthase pathway. The nucleotides will help to supply RNA and DNA for making new cells until the folate cycle is operating normally again.

    Phosphatidylserine complex—This contains various phosphatidyls and fatty acids, which will help to repair damaged membranes, including those in cells of the brain and nervous system. It should help with the cortisol response. It also has some choline, which can be converted to TMG (betaine) in the body, to help stimulate the BHMT pathway.

    Perque B12--This is sublingual hydroxocobalamin. The dosage is fairly large, in order to overcome the blocking of B12 by toxins such as mercury in CFS. As I mentioned above, B12 is needed to stimulate the activity of methionine synthase. Methylcobalamin is actually the form needed, but some people cannot tolerate supplementing it for genetic reasons, and I'm also concerned that people with high body burdens of mercuric mercury could move mercury into the brain if they take too much methylcobalamin. Methylcobalamin is the only substance in biological systems that is known to be able to methylate mercury. (Note that methylcobalamin is the substance used by bacteria to perform methylation on environmental mercury, and the resulting methylmercury is concentrated in the food chain up to the large predatory fish and enters the human diet.) Methylmercury can readily cross the blood-brain barrier. Methylation of mercury by methylcobalamin has been reported in the literature to occur within the bodies of guinea pigs in laboratory experiments. Perque B12 is sublingual to compensate for poor B12 absorption in the gut of many people.

    There are also two other supplements that were included in the earlier version of the simplified approach:

    SAMe--This is normally part of the methylation cycle. Depending on genetic variations (SNPs or polymorphisms) some PWCs can't tolerate much of this, and some need more. If PWCs can't tolerate this, they should leave it out, because stimulating the BHMT pathway, using TMG and choline in the other supplements, will probably make enough SAMe for them naturally. For people who can tolerate SAMe, a dosage of 400 mg per day is suggested.

    Methylation Support RNA Formula--This is a mixture of RNAs that is designed to help the methylation cycle. It is somewhat expensive, and is not essential, but is helpful if people can afford it. Dr. Amy Yasko has since advised me that if a PWC desires to take only one of her RNA Products, she would suggest choosing either the Health Foundation RNA Formula or the Stress Foundation RNA Formula, rather than the Methylation Support RNA Formula, as being most helpful to take the edge off the detox.

    The above suggested list of supplements may not be optimum, and future clinical studies may produce an improved protocol. I think that the forms of folate and B12 are probably essential, because they target what I believe is the root issue in the abnormal biochemistry of CFS. I think the Complete supplement is important to support the general biochemistry and to correct deficiencies that might be present in essential nutrients, as well as to support the methylation cycle and the rest of the sulfur metabolism. I think that some way of stimulating the BHMT pathway is important, also, to bring up SAMe, and the phosphatidyl serine complex provides this, as does the TMG included in the Complete supplement.

    With regard to possible interactions between the supplements in the simplified treatment approach and other supplements that PWCs may be taking, I am aware of two: (1) I would not recommend taking additional folate beyond what is suggested above, since the various forms of folate compete with each other for absorption, and it is important to get enough of the active forms into the body. Also, it is important not to take too much folate, as mentioned above, because this can cause the detox to develop a momentum, so that it will take some time to slow it down if you want to do that. (2) I would also not recommend taking additional trimethylglycine (TMG, also called betaine) or additional forms of choline, such as phosphatidylcholine or lecithin, since that may stimulate the BHMT pathway too much at the expense of the methionine synthase pathway. The betaine-HCl used to augment stomach acid is something that may have to be omitted while doing this treatment, too, since it will contribute to this stimulation.

    Adding glutathione support will help some people, as will adding molybdenum.
    As more things are added, though, one is moving toward the full Yasko approach, which is more complicated and expensive. If this is done, I recommend that it be done with the guidance of Dr. Yasko and under the supervision of a personal physician. The simplified treatment approach appears to work well by itself for many PWCs, but others may find that the die-off and detox (or even adverse effects) from this approach used by itself are too severe. In those cases, the PWCs could consult “The Puzzle of Autism,” sold on, to consider together with their doctors what else discussed there might help them. If the simplified approach seems to help to some degree, and it captures one’s attention for that reason, but it still either does not accomplish all that is desired, or it is not tolerated, then perhaps the next step would be to consider the full Yasko treatment. At least then there would be stronger motivation to look into it. Otherwise, it can appear very daunting to many PWCs.

    The reported responses to this treatment approach have mainly involved a combination of two categories of effects: (1) improvements in some of the common CFS symptoms (some of them quite rapid and profound), and (2) intensification or initial appearance of a variety of symptoms that appear to result from increased detoxification and immune system attack on infections. The former are most welcome, and they are what continue to motivate the people on this treatment, in the face of the detox and die-off symptoms, which are unpleasant but appear to be inevitable, given the large body burdens of toxins and infections that many PWCs have accumulated during their illness, lacking adequate detox capability and cell-mediated immune response during that time.

    In addition to these main responses, a few PWCs have reported adverse effects, some of them quite serious. These are discussed below. A few of those who have started the treatment have stopped it for various reasons, including adverse effects. Some have taken breaks from the treatment and have then returned to it or are planning to do so.

    While this informal testing of the simplified treatment approach currently is not being carried out in a controlled fashion, and while not all the PWCs trying it are using the complete suggested complement of supplements, it is nevertheless possible to state that the treatment appears to be working for quite a few PWCs, though not all.

    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 hypoglycemia 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.
    18. Feeling unusually calm.
    19. Feeling "more normal and part of the world."
    20. Ability to stop steroid hormone support without experiencing problems from doing it.
    21. Lowered sensation of being under stress.
    22. 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. Diarrhea, loose stools, urgency
    23. Unusual color 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

    Finally, the responses reported below are more serious, and I would classify them as adverse effects of the treatment. This list includes all the adverse effects of which I am aware at the time of writing this article, but I suspect that as more PWCs try this treatment with the assistance of their physicians, this list will grow. I am describing these as they have been reported on the ImmuneSupport CFS discussion board by the PWCs who experienced them. Though this information may be incomplete, and cause—effect relationships are difficult to determine exactly from the available information, I’m hopeful that it will be helpful to clinicians and other PWCs:

    1. One person had had a history of severe pesticide exposure and also autonomous multi-nodular goiter, which she described as follows: “Gradually the right lobe grew to over 4 cm x 4cm, and had to have right lobe out. . . This same surgeon made the decision to leave the left lobe in, as I had always had trouble with thyroid med back then too. So, they restarted my Synthroid and I stayed on that for [a] few more years. I ALWAYS had shortness of breath and became VERY tachycardic upon ANY activity. . .” This person started the simplified treatment approach on March 21, 2007 (actually using higher dosages than suggested for FolaPro and Intrinsi/B12/folate). On May 19, she went to an emergency room with tachycardia, chest pain, trouble breathing, trouble sleeping, elevated blood pressure and fever of 100.7 F. She was admitted to the hospital and released the next day. No evidence was found for heart attack. This person later reported the following: “I followed up with my PCP and had CT scan of neck and chest and my goiter is causing tracheal compression, again, and breathing is VERY hard. . . My area hospitals can't do this surgery because my goiter grows substernal, deep in my chest.” This person has expressed a desire to continue the simplified treatment approach, but is currently exploring the possibility of first having additional surgery on the multinodular goiter.

    2. A second person had a history of lung problems due to both carbon monoxide exposure and exposure to molds, as well as heart-related symptoms. She started part of the simplified treatment approach on May 27, 2007. After having been nearly homebound for ten years, she was able to begin riding a bicycle. However, in early July, 2007, she went to an emergency room twice with severe breathing problems (shortness of breath), a fever of 99.8 to 100.1 F. that eventually lasted for sixteen days, and severe chest and left arm pain. No evidence was found for heart attack. She was diagnosed with an enlarged left atrium and diastolic dysfunction. She has currently discontinued the simplified treatment approach and is under the care of cardiologists.

    3. A third person had a history of autoimmune disease, including Sjogren’s syndrome. After her fourth dosage of combined FolaPro and Intrinsi/B12/folate, she experienced “a moderately severe autoimmune flare, with numerous joint and soft tissue issues, fatigue, pain, etc.” She also experienced a severe flare of Sjogren’s syndrome, with “very dry mouth, dry eyes, and severe eye pain.” Six days after discontinuing the supplements, she had a thorough ophthalmology workup and was diagnosed with autoimmune scleritis. She has been given topical steroids and has reported that her eyes are greatly improved.

    4. At least two persons experienced a temporary termination of peristalsis of the gut and consequent constipation after beginning the simplified treatment approach. In these two cases, induction of diarrhea cleared material from the gut, but did not restore the peristalsis. In both cases, peristalsis restarted twelve days after terminating the folate-containing supplements. One of these persons had a history of treatment with psychotropic drugs, including Klonopin. About 18 hours after starting to get relief from the constipation, she became very sick, with “vomiting, vise-like headache, and shaking.” She had many bowel movements over a ten-hour period, and then began to feel better. The other had a history of autoimmune diseases, including Sjogren’s syndrome and Autoimmune Ovaritis, as well as diastolic dysfunction.

    There are many questions remaining to be answered about this treatment approach, including the following:

    1. For which PWCs would this be an appropriate treatment approach?
    2. For what fraction of the entire PWC population will this treatment approach be beneficial?
    3. How can PWCs who are likely to experience adverse effects from this treatment approach be identified beforehand, so that these effects can be avoided?
    4. Are there PWCs who are too debilitated to be able to tolerate the detoxing and die-off processes that result from this treatment approach, and if so, will the full Yasko treatment approach be suitable for them?
    5. Will the simplified treatment approach actually lead to continuing improvements over longer times for those who find it beneficial, all the way to cured cases?
    6. Will the simplified treatment approach be effective in cases of "pure fibromyalgia" as it appears to be in many cases of CFS?
    7. How can this treatment approach be further improved?

    And many more.

    However, the results to date seem encouraging. I suspect that many PWCs can be helped by this treatment approach or something similar to it. I also believe that the appearance of improvement in such a wide range of CFS symptoms when this treatment approach is used provides evidence that a block in the methylation cycle does in fact lie at the root of the biochemical and physiological derangements found in many PWCs, or very near to it. The wide range of symptoms that appear to be associated with die-off and detox appear to give evidence that this treatment is in fact stimulating more normal operation of the immune and detox systems.

    I want to reiterate what I wrote near the beginning of this article: This treatment approach must be entered upon only under the supervision of a licensed physician, to make sure that if there are individual issues that arise, they can be taken care of immediately. The treatment approach itself consists only of nonprescription supplements that are normally found naturally in the body and are necessary for normal biochemistry to take place. It would thus appear to be fairly benign on its surface. However, it must be pointed out that restarting the methylation cycle after it has been blocked for extended periods, particularly in those PWCs whose general health has become quite debilitated, or those who have certain respiratory, cardiac, endocrine or autoimmune conditions, can present some serious challenges. I believe that there is still much more to be learned about the possible hazards of applying this treatment approach to the very heterogeneous CFS population, and this work properly lies in the province of clinicians. I am not a licensed physician, but a researcher. I believe that I have carried this work as far as a researcher can appropriately carry it. I am hopeful that clinicians will further test this treatment approach in order to learn how it may be safely, effectively, and practically utilized to treat PWCs, and it appears that this is now beginning to occur.

    I also hope that physicians or their patients who decide to try this treatment approach will let me know how it works for them, though I may not be able to answer all the emails I receive, as their volume is growing.

    Rich Van Konynenburg, Ph.D.
    Independent Researcher and Consultant

  15. Janalynn

    Janalynn New Member

    Wow - this thread has stirred up a lot of emotions in me. I respect everyone's opinions.
    Fibromyalgia IS real and I believe it is something unto itself.
    Saying it's a wastebasket diagnosis is something that many people have been fighting to educate others about. I respectfully disagree with that.
  16. Janalynn

    Janalynn New Member

    I don't quite understand your statement. - the drug companies are looking for a health issue to fit their drugs.
    Thank goodness! Thank goodness they found a medication to help diabetics, to stop the progression of other diseases.
    I think that most here who really SUFFER daily would glady accept a medication that would cure them or alleviate their symptoms. That's why many were so hopeful about Lyrica.
    Unfortunately it didn't have the same results they or we were hoping for.
  17. Janalynn

    Janalynn New Member

    You're right - mislabeling patients is wrong. I would hope that since you were diagnosed things have changed in the medical field somewhat and Dr.'s are more educated in what to rule out.
    When I was first diagnosed I was tested for many things before being told I had Fibromyalgia.

    I disagree that all Dr's have the mentality of 'we don't have any idea what's wrong with you" so they label you with Fibro. Many people are diagnosed correctly. (my opinion)

    I specifically did not see a chiropractor (not into them anyway, but was begged by my boss to at least visit) because he said "it's a waste basket diagnosis". I felt he was very uneducated.
  18. Janalynn

    Janalynn New Member

    If people think Fibro is thyroid issues, Vit D deficiency etc. then you didn't have Fibro to begin with, you had Thyroid issues and Vit D deficiency. If you take Vit D and Thryoid meds to be at good levels and your "Fibro" doesn't "go away", then to me, you have those issues on top of your Fibro.

    BTW- Fibro is not arthritis. No inflammation w/Fibro.

    It goes back to if you have the right diagnosis. Do you have something else other than Fibro?
    A responsible Dr. will dig and test to rule out other things.

  19. Janalynn

    Janalynn New Member

    I'm right there with you. I actually know someone who has some shoulder/neck pain who "has Fibro" - ibuprofen helps her. She really isn't effected any other way.
    She and I are at the opposite ends of the spectrum.

    I agree in the same aspect as you do - throwing a diagnosis at too many people - it's hurting the rest of us who do have it, it's even evident here. - or maybe I'm feeling sensitive tonight.

    Shananegans - for you, I am SO happy that you have found out what has been your real issue for all of these years! To many of us that would be a dream come true!
  20. Janalynn

    Janalynn New Member

    the only thing I disagree with possibily is the "most" of us - it could be many of us. Like you said and I stated above...people may have other problems instead of Fibro, but that is NOT Fibro.

    I think your second to last paragraph made sense. I personally haven't been ill-treated but would hate to see that happen.

    I've seen 4 different drs- none related - one had Fibro. Each one told me that Fibro was a problem with the pain receptors - Substance P. When I told my rheumy - who has many Fibro patients, somewhat jokingly, to "fix me" - he said, we'd have to fix your brain - it's a central nervous system disorder.

    I guess I've been fortunate, any one I've run into has treated me well including all Dr's. Even people I know, work with etc. when told, know enough that it's a very painful condition.