Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Dr. Myhills notes on fatigue, the immune systems energy demands, and Rituximab

Discussion in 'General ME/CFS News' started by Ember, Feb 17, 2012.

  1. Ember

    Ember Senior Member

    by Dr. Sarah Myhill, MD*
    February 17, 2012

    Dr. Sarah Myhill is a UK-based physician with a special interest in nutrition and fatigue. Her pioneering research (Chronic Fatigue Syndrome and Mitochondrial Dysfunction) suggests the cells energy generating mitochondria are dysfunctional in chronic fatigue syndrome(ME/CFS) and other 'neuro-immune' illnesses. This article is excerpted with kind permission from Dr. Myhills educational website (*


    Energy Expenditure in ME/CFS: Immune Wastage of Energy and Rituxim

    We all have a pot of energy which is available to us to spend over the day. What prevents us spending too much is the symptom of fatigue.

    We have to spend that pot of energy just to stay alive in "house keeping" duties - but in addition mentally, physically, emotionally or immunologically.

    In ME/CFS either that pot of energy can be small (because of poor mitochondrial function, poor fuel supply, poor adrenal function, poor thyroid function and so on), or we can be spending energy wastefully.

    Of course, the business of pacing is all about spending mental and physical energy judiciously. Many have experienced how energy sapping it is to expend emotional energy.

    However, I suspect a greatly overlooked cause of wasting of energy is immunological.

    Energy must be expended on daily "house keeping" duties. I was intrigued to see the following energy expenditure breakdown in Wikipedia:
    - Liver 27%,
    - Brain 19%,
    - Heart 7%,
    - Kidneys 10%,
    - Skeletal muscle 18%,
    - Other organs 19%.
    It astonished me that the liver consumes more energy than the heart and brain combined! Much of this has to do with assimilating and detoxing food from the gut!

    Immunological Energy

    I see the immune system to be like the brain, i.e. it is enormously demanding of energy. We all know this - if a healthy person develops influenza, then he becomes bed-bound for two weeks (she becomes bed-bound for a week.!).

    Work done by Caroline Pond has demonstrated that when wild animals put on weight, the first place they dump their fat resources is around lymph nodes; i.e., the immune system.

    Bone marrow, of course, is very fatty, so this suggests the immune system is not just demanding of energy, but energy in an intensive form; i.e., fats and oils.

    The immune system spends energy fighting infection, which is, of course, highly desirable. However, if it gets its wires crossed, it may end up fighting the body itself (autoimmunity), or fighting substances which do not cause harm, and this is allergy.

    However, in ME I suspect there is another immunological waste of energy which has to do with microbes, possibly allergy to microbes.

    Post-Infectious ME

    A great many cases of ME follow viral infection and/or vaccination. In these conditions the immune system is switched on to fight the offending microbe.

    In the short term this is highly desirable. To be effective, all vaccinations contain immune adjuvants which are there specifically to fire up the immune system. When this works in our favor, we call it immunity.

    However, when it works against us, we call it allergy. Clinically, we know that vaccinations can trigger allergies.

    There is no doubt that there are some ME patients who do not recover until they start taking antivirals (see work by Dr. Martin Lerner in my page "Valacyclovir in the treatment of post viral fatigue syndrome, Sep 2010), antibiotics or antifungals.

    In these cases, there is often no overt evidence of infection.

    I suspect what is going on here is that these microbes are present in low levels which would not normally cause harm to the body, but the immune system continues to fight.

    It is a sort of inappropriate immune activation against microbes or allergy to microbes. This is hugely wasteful of energy. Such patients will have a large immunological hole draining their daily energy bucket.

    Immune Mapping

    What we perceive going on in the body is not what is really going on in the body, but it is what the brain tells us is going on in the body!

    The brain has a complete map of the body, which includes sensory and motor functions. Ref Phantom Limb Syndrome by Dr. VS Ramachandran (University of California, San Diego).

    It is possible that this could explain the mechanism by which healing and touch therapies such as Bowen therapy, Reiki, Kinesiology, etc. work. These techniques are literally re-mapping the brain to perceive things quickly, or direct motor actions correctly.

    It is possible that the immune system has a similar mapping process.

    I think of the immune system as having a map of what should and should not be present in the body. I imagine it sniffing about the place looking for foreigners.

    There are many good doctors who have experimented with many different types of immunotherapy, such as neutralization, enzyme potentiated desensitization (EPD) and, of course, homeopathy; and it may well be that they are having their beneficial effects because of this re-mapping of the immune system.

    All these mechanisms are characterized by extremely low levels of molecules or antigens being applied with profound effects that cannot be explained by conventional pharmacology.

    Treatment of Badly Educated B Lymphocytes

    Immune mapping probably takes place in B lymphocytes. They start life in the bone marrow, move into the blood stream, and are educated by the thymus gland and lymph nodes. This takes a few months. The mature B lymphocytes become the decision makers for immune attack or immune tolerance (war or peace!).

    Post infectious ME patients may have B lymphocytes constantly at war. These white cells have been badly educated, their wires are crossed.

    This therefore gives us a model for treatment.

    Either we can re-educate these B lymphocytes or we can kill them, or we can try to reduce the things they are inappropriately reacting against, which may be foods (diet) or microbes (with antimicrobials which could be drug or herbal, change the gut flora with probiotics).

    Re-educate B Lymphocytes with Immunotherapy

    Perhaps desensitization with neutralization, EPD or homeopathy are techniques directed at re-educating these B lymphocytes to respond appropriately by remapping the immune system?

    In the case of neutralization the result may be immediate. With EPD (and I know much more about this because I have been using EPD for 25 years!) the result is often delayed by a few months, it lasts weeks to months, and then patients may need a top up of the treatment.

    Although these desensitizations are largely directed at foods, inhalants and chemicals, some microbial antigens are also included. See Enzyme Potentiated Desensitisation (EPD) - how it works".

    Kill B Lymphocytes with Rituximab

    This drug is a monoclonal antibody specifically effective against the CD20 receptor on B lymphocytes. It specifically depletes B lymphocytes; i.e., it kills off the standing army if this army is involved in civil war, then its depletion is a very desirable action!

    Rituximab is primarily used in cancer chemotherapy. By pure chance a patient who had severe ME received this drug as part of a treatment for her lymphoma and her ME symptoms disappeared. She was delighted! Her daily energy bucket was no longer being immunologically drained!

    This prompted a study by her Norwegian oncologists, Prof Olag Mella and Dr. Oystein Fluge at Haukeland University Hospital, Bergen, to conduct a placebo controlled double blind trial into the effectiveness of Rituximab in ME.

    This was done with 15 patients receiving the active preparation and 15 the placebo [See Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome: A Double-Blind and Placebo-Controlled Study.] Rituximab had a highly significant beneficial effect.

    What was so interesting about this effect is that it took 2 to 4 months to start, it lasted for 2 to 6 months, then some patients relapsed but some were cured!

    This fits very nicely with the time scales I see in my EPD patients again there is a delayed start, improvement, then top ups required according to the clinical response.

    Another way to tackle this problem of inappropriate activation against microbes would be to use therapeutic agents which may be herbal, or prescription medication, to try to reduce the level of microbes so much that the immune system stops reacting.

    It may be that this approach explains the success of Dr. Martin Lerners work with antivirals, treatments with antibiotics for Lyme disease, and with antifungals for chronic yeast problems.

    It is the old story - we have a lot more good questions than good answers, but at least we are asking the right questions!


    * This article is reproduced with kind permission from Dr. Sarah Myhills educational website ( Sarah Myhill Limited, Registered in England and Wales: Reg. No. 4545198.

    Note: These statements have not been reviewed by the FDA. They are general information, based on the research and opinions of Dr. Myhill unless otherwise noted, and are not intended to diagnose, prevent, treat or cure any illness, condition or disease. This material is not intended to replace a one-on-one relationship with a qualified healthcare professional and is not intended as medical advice. It is always very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
    Enid likes this.
  2. Enid

    Enid Senior Member

    Oh that is good reading - thanks Ember. Great to see Dr Myhill's continuing work.
  3. maryb

    maryb iherb code TAK122

    I read this on another site a few days ago, just great to see her contributing excellent stuff as usual.
  4. maddietod

    maddietod Senior Member

    East Coast, USA
    Great find! I love how she includes alternative therapies like homeopathy and Reiki, weaving them into her understanding of what's going on with us.
  5. xchocoholic

    xchocoholic Senior Member

    Great article. Thanks. This should help us explain our fatigue.

    I definitely have an upregulated immune system, but I'm not sure what would help.
    Killing off b cells seems like a waste of time if my body is just going to over produce
    these again. And I'm not sure it's just b cells my body is overproducing either. I have high
    auto antibodies to my thyroid, antibodies to gluten, high easinophils (sp?), high viral titers,
    Etc ?.

    Doesn't the problem originate in the gut ? So fixing the gut should work ?
    Tc .. X
  6. Vitalic

    Vitalic Senior Member

    Not really, it damaged the credibility of the article if anything
    Wonko likes this.
  7. The b-cells that get killed, are infected with the latent herpes virus that causes your immune system to respond ineffectively.
    The new ones aren't, or if they are you'll have to replace them again.
  8. its ME Jeff

    its ME Jeff

    It great to see that Dr. Lerner is getting some national attention as well. I've been on his protocol for 4 months now and we are very hopeful. It is very true that Dr. Lerner is very excited in the results he is seeing from his patients. His confidence and knowledge are VERY reassuring! Keeping my fingers crossed that I have finally landed in the right Drs. office.
  9. xchocoholic

    xchocoholic Senior Member

    thanks .. I don't understand this tho. Can you give me a good easy to understand link on b cells.

    Tc .. X
  10. redrachel76

    redrachel76 Senior Member

    I got much worse on Dr Myhill's complete protocol. I suspect it was the elimination diet combined with a bad reaction to the EPD.

    I get so annoyed when I read so much about her on the internet...what on earth does she know about Rituximab...other than the paper we have all read which is not enough at the moment....and now she is throwing in the Reiki nonsense.

    This is a serious physical illness like MS or cancer...alright it is not fatal but it is seriously disabling in a physical sense. It doesn't need stuff like "Energy fields" and "Reiki" thrown at it. I strongly recommend anyone be careful before they try her treatment because it really worsened my condition.
    EPD has zero papers written on it's interaction with M.E. I know I worsened on it personally. I have often considered writing a website on my experience with Dr Myhill because I am so sick of hearing of this.
    ahimsa likes this.
  11. maryb

    maryb iherb code TAK122

  12. Valentijn

    Valentijn Senior Member

    I haven't had Dr. Myhill as a doctor (and also don't much care for mixing spiritual practices with my medicine), but I did do an elimination diet, and discovered a couple allergies. I had constant mild swelling prior to that, and now I just have it if I eat the foods that I shouldn't. In my case, that means gluten and egg whites.

    Now I also get an itching sensation on my stomach if I eat those foods, which is a warning sign I didn't get when I was eating them daily.

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