Advances in ME/CFS , simple expl. on DR.K.DE MEIRLEIR work

Discussion in 'Fibromyalgia Main Forum' started by karinaxx, Sep 26, 2006.

  1. karinaxx

    karinaxx New Member

    Highlights from Dr. Kenny De Meirleir’s Lecture
    Calgary, Alberta, April 2, 2006

    Marjorie van de Sande, B Ed, Grad Dip Ed

    National ME/FM Action Network, Advisor & Webmaster

    Conference Planning Committee



    Dr. De Meirleir is a world renowned researcher and is professor of Physiology and Internal Medicine at Free University of Brussels in Belgium. Dr. De Meirleir recently published his 600th peer-reviewed paper. He is co-editor of “Chronic Fatigue Syndrome: A Biological Approach”, co-editor of the Journal of Chronic Fatigue Syndrome and reviewer for more than ten other medical journals. Dr. De Meirleir was one of four international experts on the panel that developed the Canadian Consensus Document for ME/CFS. He assesses/treats 3,000 to 4,000 ME/CFS patients annually.



    Normal Response to Infectious Agents

    Numerous infectious agents can trigger ME/CFS. Infectious agents that invade cells release ribonucleic acid (RNA) or deoxyribonucleic acid (DNA) when they reproduce. Normally when a virus infects a cell, an enzyme called Ribonulease L (RNase L) is activated and cuts the RNA of the infectious agent so it cannot replicate itself. The RNase L molecule also cuts the RNA of the infected cell, which triggers the cell’s death and removal. Then the RNase L molecule “switches off” and remains inactive so that it doesn’t damage healthy cells.



    Abnormal RNase L Molecule Found in ME/CFS Patients

    The normal weight of the RNase L molecule is 80 kilo Daltons (kDa). In ME/CFS patients, the RNase L molecule is being cut and weighs 37 kDa - less than half its normal weight. The low molecular weight (LMW) RNase L molecule can discriminate ME/CFS patients from healthy people, and illnesses such as fibromyalgia, multiple sclerosis, cancer, AIDS and depression. The Centers for Disease Control (USA) sent 100 blood samples to Dr. De Meirleir. Using the test for LMW RNase L, Dr. De Meirleir was able to identify which blood samples came from ME/CFS patients with 99% accuracy. These findings confirm an organic origin of ME/CFS and validate the diagnosis.



    Abnormal RNase L Molecule Causes Chronic Dysfunction of the Immune System

    The damaged RNase L molecule is not able to kill infectious agents and it keeps damaged cells alive. The body is unable to “switch off” these abnormal RNase L fragments so they continue to cut the RNA of normal cells. The destructive RNase L fragment is six times more active than normal and consumes approximately 70% of the cells’ energy (ATP). RNase L fragments destroy normal protein synthesis, enzyme production and other vital cellular functions. They inhibit respiratory muscles, and cause hyperventilation, metabolic alkalosis, sleep disturbances, and central fatigue. There is sodium retention, low magnesium levels and dramatically low levels of potassium. Natural killer cells, which protect against viruses and intracellular infections, are also being damaged. Thus, the immune system is in a state of chronic dysfunction.



    Testing for ME/CFS

    Dr. De Meirleir is co-founder of REDLABS www.redlabsusa.com, which recently opened a lab in Nevada, USA.

    This lab offers diagnostic and treatment tests for ME/CFS patients. Although each patient’s profile is unique, patients tend to fall into three groups with different causes and treatments. Based on the results of six tests, Dr. De Meirleir was able to predict patients’ symptoms with 95% accuracy while the remaining 5% had overlap features. Symptom severity rises in correlation to the rise in the level of LMW RNase L.



    Group Profiles

    · Group 1: (15-20%) This group has high levels of LMW RNase L and elastase, low levels of protein kinase (PKR) and uric acid, and low to normal levels of nitric oxide. Spinal taps indicate elevated levels of lymphocytes and proteins in the spinal fluid and there is increased pressure upon opening the lumbar puncture.



    These patients have a chronic low-grade viral infection and inflammatory reaction in the brain. Many micro-organisms are associated with this profile. Heavy metals, pesticides and other triggers may also be involved. Approximately 20% of this group has low-grade Herpes Virus 6A (HHV6A) encephalitis.



    The prominent feature is neurocognitive problems such as confusion and impaired concentration and memory. Fatigue originates in the brain. Pain is not prominent. Patients exhibit symptoms that have some similarities to multiple sclerosis (MS).



    · Group 2: (10-15%) Patients have very high levels of LMW RNase L and elastase, high protein kinase activity, severely low natural killer cell activity and very low serum uric acid levels.



    This group of severely ill patients has bacterial infections originating from animals such as pets, rodents, ticks, etc. These patients have severe bowel problems. The gut is an important part of the immune system because 70% of immune cells are in the digestive tract. When a patient has leaky gut syndrome, the gut has become permeable and foreign proteins enter the blood and tissues and inflammation results. Dr. De Meirleir tests for 12 pathogenic gut bacteria.



    · Group 3: (60-70%) The majority of ME/CFS patients are in this group. This profile is basically similar to Group 2, but not as severe. Generalized pain originating from dysfunction in the pain processing areas of the brain and CNS is a prominent feature. These patients have gastrointestinal infections and bacteria are in the blood.



    Some Other Areas of Investigation

    · Infections: Part of the immune system is activated and part is suppressed, leaving the patient vulnerable to opportunistic infections. Patients may have one or a number of infections. Serum Immunobilan tests are done to identify which ones are active. Suspect microorganisms include viruses, bacteria, and mycoplasma. A chlamydia pneumonia infection is often found in patients with chronic sinus infections. Approximately 8 – 10% of ME/CFS patients have infections of animal origin such as Rickettsiae, Coxiella, Bartonella and Borrelia. Many of these infections come from pets. A small percentage come from ticks.



    · Heavy Metals: Exposure comes from many sources including food, insulation, air, etc. ME/CFS patients have increased sensitivity to chemicals, environmental pollutants and heavy metals, particularly mercury and nickel. Toxins can trigger an inflammatory response.



    One of the RNase L fragments has a structure that is almost identical to a protein involved in the removal of heavy metals and toxic chemical from cells. When this protein is blocked by the RNase L fragments, the cells become more sensitive to mercury. Now a tiny amount of mercury that would normally kill 10% of the cells can kill 50 to 100% of the cells.



    · Mycrotoxins: Fungi such as Aspergillus Niger and Candida can contribute to ME/CFS symptoms. Candida is a yeast fungal infection that changes sugars to aldehydes, a toxic form of alcohol.



    · Digestive Tract: Gastrointestinal problems are a serious concern in ME/CFS patients. 70% of the body’s immune cells are found in the gastrointestinal tract. These immune cells prevent bacteria and foreign protein from entering the blood stream. When the gut become permeable and foreign protein enters the blood stream, elastase is produced. Elastase is the enzyme that is responsible for cutting the RNase L molecule into fragments. Elastase breaks down elastin, which gives elasticity to collagen. As a result, there is pain and a loss of elasticity in ligaments and tendons.



    · Peripheral Resistance to Thyroid Hormone: Most patients have normal results for common thyroid tests. However, ME/CFS patients have a much higher level of a protein that is 98% identical to T3, which is the active form of thyroid. Because this foreign protein can bind to T3 receptors, T3 cannot find receptors and is therefore ineffective in its role of activating cellular metabolism.



    Treatment Summary

    Some psychiatrists advocate that no tests or lab work be done on ME/CFS patients because testing will reinforce delusions of physically illness. Given the wealth of confirmed biochemical abnormalities, such rationale is ludicrous. Dr. De Meirleir stressed that tests must be done in order to determine the origin of the problem. Then treatment can be prescribed to eliminate the cause. A “clean-up” of all the consequences of the problem must also be undertaken. Therapies and the order of treatments vary according to the patient’s unique test profile. Treatment includes:

    1. Restoring immune competence

    2. Removing microorganisms

    3. Restoring hormonal balance

    4. Restoring intestinal flora

    5. Decreasing prostaglandins and protein kinase activity

    6. Removing heavy metals and toxic chemicals



    Dr. De Meirleir describes various treatment therapies in his lecture, which is available on DVD.
  2. findmind

    findmind New Member

    Thank you for posting this vital information.

    Do you know where one can get the DVD?

    Have you been tested by REDLABS?

    I wonder how much the testing costs, and who would be supervising the treatment plan...he doesn't see patients in U.S., does he?

    Again, important scientific data that shows the devastation of CFS/ME.

    Thanks,
    findmind
  3. karinaxx

    karinaxx New Member

    i just want to add, that this findings are not new, but it seems more and more organisations are taking the work of Dr.k.Meirleir serious. i posted this information because it is easy to understand for the new ones on board and the ones who doupted his work.
    the DVD is available on the site of http://www.mefmaction.net/
    the test are done by http://www.redlabsusa.com/contactus.htm
    there is also information about Dr.Meirleir on the site here at immunosupport. check the archives or newsletters.
    i know that Dr.Meirleir treats only in Belgium, but i have not found the adress of the clinic again. still looking for it under my stored sites.
    i did not test at redlabs, because i am to far away from it, but i am planning a trip to Belgium. i have tested for Mycoplasma and other stuff here and it showed posititve in Mycopl.PN. others have to be repeated.
    hope i answered all your questions.
    love karina
    [This Message was Edited on 09/27/2006]
  4. karinaxx

    karinaxx New Member

    thanks for the adress info.
    do you mean you actually have been a patient of Dr. Meirleir?
    if yes, what was your experience?
    would be gratefull to get some first hand info....
    take care
    karina
  5. karinaxx

    karinaxx New Member

    a lot of good suggestions from you!
    As i said, some of the test i did allready here, taking into consideration Dr. cheneys and Dr.Nicholson recomendations. they overlap. but some are not available here and than there is another big question of my son, who also is suffering from ME/CFIDS, but has not been diagnosed, because of lack of knowledgeable docs in Switzerland and India. how old is your friends daughter?
    is he diagnosing 10 year old ?
    it is a difficult situation, because of all the traveling involved and both of us are not actually well enough to travel so far and often.
    but i will try to contact Dr. Meirleir directly and send him in advance all the medical records, if possible , maybe that will help to make it more smooth and do the apointmment as you suggested well in advance.
    about treatment i have to see anyway, i reacted several times very bad to antibiotic treatments, with autoimmune reactions like MS following.
    anyway, thanks
    karina
  6. karinaxx

    karinaxx New Member

    very helpfull!
    just two more things, if you dont mind: you said that you had a nice treatment plan and it did not work out. can you specify a bit. what did not work out and why?
    and how old is the daughter of your friend?(just to know the age, will tell me if he actually treats kids at such a joung age. My doc in Switzerland refused to diagnose him, he had no expirience with kids so young and we were there only for a short time. the situation for kids in ch is very bad, no help at all, no knowledgeable paedr. and so on)
    love karina