question about the nature of CFS (and maybe fibro)

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Apr 20, 2009.

  1. bigmama2

    bigmama2 New Member

    here's a weird question i sometimes think about. wanted to throw it out and see what you all think. people may feel passionately about this one way or the other- but lets keep our posts civil.

    ---- some people on here, and some traditional doctors (MD) or alternative drs feel that CFS or fibro can be effectively treated, and reversed and even cured- if patients strictly adhere to very very healthy regimes of healthy eating, avoiding food allergens such as gluten or dairy, taking many supplements (all kinds- vitamin, mineral, herb, amino acid, etc), detoxing, deep breathing/meditation/relaxation/positive thinking, etc, also sometimes taking certain medications like antidepressnats,antivirals,. sleep pills, pain killers, replacement hormones.....
    and etc etc. I know that this approach has worked for some people on this board. (congrats!) and for others it has not helped, or has partly helped. (i am in that partly helped category).

    soo my question is--- is cfs really still an "illness" if it can be fixed with healthy eating habits and supplements etc, like some people and drs say????? is it an illness or just the result of unhealthy habits????

    what do you guys think???

    bigmama2[This Message was Edited on 04/20/2009]
  2. kjfe

    kjfe New Member

    As with any autoimmune "disorder" there is more of a list of symptoms that doctors put a label on, compared to diseases like hardening of the liver, diabetes, cancer, etc. Nevertheless, as long as there is physical distress and symptoms that are abnormal, how can CFS not be an "illness"?

    Cancer and MS can go into remission, but they are still considered illnesses even while in remission. Diabetes can be controlled with medication but it is still a disease. Mental illness can be treated with medication and therapy, but it is still an illness.

    As far as taking care of oneself.... I have never smoked, drank alcohol, taken illicit drugs, been overweight, always taken vitamins, exercised, etc. I never had mono or any serious health issues before I got CFS. I've eliminated sugar, dairy, white flour, added yoga, dietary supplements, etc. Still sick for over ten years.

    I think a lot of us have wondered if we're not doing enough to get better. We all wonder what this "thing" is that has invaded our bodies and subsequently our minds. Sadly, because of the mystery surrounding CFS your question is valid.
  3. ladybugmandy

    ladybugmandy Member

    complicated question! my brain fog is bad so i won't even attempt to answer it! lol

    i don't think CFS is considered autoimmune....
  4. greatgran

    greatgran Member

    I love your post, CFS is the most devastating and disabling thing that has happened to me.

    I have tried lots of things, been to many doctors and still know no more than when I first became ill, except I am not getting any better. In fact I am going down hill.

    There is a debate out now about CFS being autoimmune, I do feel there is something autoimmune going on with my body. One doc I went to says it is autoimmune since most of us have high positive ANA's etc. yet no lupus.

    I don't have any answers except nothing has worked for me but lots of rest and trying to accept the fact that I can't be me anymore, so mostly stay in and try to live with it.

    Anxious to see more replies.

    God Bless,
  5. Forebearance

    Forebearance Member

    Well, yes, I think it's an illness.

    Other things like cancer that are known illnesses are sometimes helped by all the things you mention, like healthy eating, stress reduction, supplements. I figure why not throw everything you can at the illness?

    Dr. Shoemaker has convinced me that most CFS and FM is caused by neurotoxin poisoning. A study already found out that Gulf War Illness is caused by neurotoxin poisoning. A person has to be genetically susceptible, and then once the ball gets rolling lots of viruses jump on board or are reactivated.

    So for me, the detoxing that I am doing is not like the "liver cleanse" you buy at the health food store. I am removing serious poisons from my body. That's my 2 cents.

    I wish you could find something that helps you, bigmama2.

  6. ladybugmandy

    ladybugmandy Member

    cfs can become autoimmune ...infections can trigger autoimmunity.
  7. TigerLilea

    TigerLilea Active Member

    Yes, CFS is still an illness, even if healthy eating habits and supplements cure it. Malnutrition, or deficiencies can lead to illness.

    An example is about 20 years ago there was a teenager in the UK who was severely depressed and was hospitilized on and off over several years. None of the antidepressants were working, and psychotherapy was having no effect. It took several years for the doctors to realize that this girl was deficient in one of the B vitamins and within weeks of getting her on daily supplements, her depression totally cleared up.

  8. bigmama2

    bigmama2 New Member

    thanks for all the replies.

    i'll write more later.

  9. richvank

    richvank New Member

    Hi, bigmama2 and the group.

    There is considerable evidence now that the root issue in the abnormal biochemistry of CFS in most cases that have been tested is a partial block in the methylation cycle. The possible original causes of this are manifold, and they include neurotoxins, as Forebearance has mentioned, but there is also a wide variety of other possible causes as well, and that accounts for the differing histories within the population of PWCs.

    I would strongly suggest that you ask your doctor to order the Vitamin Diagnostics, Inc., methylation pathways panel. That will tell you whether or not you have this partial block, and if you do, there is a treatment for it that is nonprescription and costs less than $3 per day. Dr. Nathan and I reported on a clinical trial of this treatment at the IACFS/ME conference last month in Reno, and the results of the study were that over two-thirds of the patients benefited, and the benefits were significant. The study ran for only 9 months, and the patients were continuing to improve at the end of the study.

    bigmama2, you mentioned the FFC in your bio. Some of the FFC doctors are now starting to incorporate treatment for the methylation cycle block in their protocols. The other treatments offered by the FFCs can be helpful, but they are all downstream of the fundamental cause. Some of the doctors who specialize in treating Lyme disease are doing so as well. There is evidence in the medical literature that both the Lyme bacteria (Borrelia burgdorferi) and the toxins from toxic molds deplete glutathione in their hosts. That is the route into developing a partial methylation cycle block for those who are genomically predisposed. We are slowly but steadily pulling together an explanation for these related disorders, and they all come down to producing a partial methylation cycle block.

    So I hope you will take the bull by the horns and request this test. It does cost $300, but there are quite a few people now who will tell you that it is one of the best investments they have made. I'm not involved with the lab that runs this test. Here is the contact information:

    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 make use of the following interpretive comments:

    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.


  10. Shananegans

    Shananegans New Member

    First personally I think that all though some of the symptoms are similar, CFS and FMS are too completely different illnesses. I was diagnosed with FMS and never with CFS. From what I have read, CFS comes with a whole nother set of worries that I'm an honestly glad I do not have and sorry to hear others do.

    I am a firm believer that FMS can be "cured" with diet and lifestyle changes, but I only think that because I have greatly improved with a gluten free, dairy free diet and have found others who have also improved, many many others. I suffered for years with extreme muscle pain, joint pain, exhaustion and I pretty much lost my life because of being "misdiagnosed" (and I use that term very lightly because I feel once you are told you have FMS they stop looking, not necessarily a misdiagnosis as much as a not paying attention). And previous to getting sick I was active, healthy and never ever lazy - I worked my butt off and loved my life.

    CFS on the other hand should definitely be renamed and considered autoimmune if it isn't already. There are many immune systems issues related to and cause of CFS and I feel it is a much more serious situation. With CFS there are blood tests that can prove you have it and with FMS there is not. FMS is process of elimination and tender points. CFS is proven an actual illness.

    I hope I don't offend anyone diagnosed with FMS. I do feel it does exist, I just don't feel all doctors use the diagnosis properly, please don't misunderstand. I know there are people out there that have this diagnosis that do not improve with diet and lifestyle changes, so please don't misunderstand my position. I was healthy, active, ate well and have always been happy before I got sick and then too sick to function. For me, recognition of food issues has offered the possibility of getting my life back and I'm hoping this truly is the answer.

    And now I'm just rambling because I'm tired and it's late so I'll stop here. In short, CFS is an illness. FMS is a big fat question mark.