Does anyone believe that CFS/FMS research maybe done incorrectly?

Discussion in 'Fibromyalgia Main Forum' started by Mike, Mar 13, 2003.

  1. Mike

    Mike New Member

    I do and I'll give you my reasons. Trials and studies are only performed on patients that meet CDCs strict criteria of CFS or FMS. This is a very difficult way of solving a problem since these patients generally have multiple problems and do not respond well to treatment.

    Most researchers believe that CFS and FMS are the same disease but just manifests itself in a different way. I also tend to think that Idiopathic Chronic Fatigue is just a milder case of CFS. However many patients of Idiopathic Chronic Fatigue respond very well to treatment. Therefore it would seem that at least some research should be done on Idiopathic Chronic Fatigue.

    Now why would it help to research Idiopathic Chronic Fatigue patients that responds well to only one drug? The benefits are as follows.

    1. Simpler problem.
    2. Large numbers that respond well to a drug.
    3. Repeatable condition. Drugs can be removed to bring on the fatigue or restarted to stop the fatigue.
    4. Can easily determine which drugs are most helpful.

    Just doing the above would not help a lot but researchers would have to think OUT OF THE BOX to try to solve the problem. If researchers do not think OUT OF THE BOX they would probably draw the following conclusions.

    1. Elavil or Trazadone works. Must be a sleep problem.
    2. SSRIs worked. Must be a seratonin problem.
    3. Stimulants worked. Must be the stimulant effect.
    4. Diet works. Must be a gut problem.
    5. Exercise works. He or she just needs to exercise.

    Those conclusions may be correct but there is a possibility that they are not correct. The reason that I say that the conclusions may be wrong is that drugs are very dirty (they are designed to do one thing but also generally do many other things). If they only did what they were supposed to do, then you would have either little or no side effects. As an example, both Elavil and SSRIs both increase seratonin levels but one is considered a sleep aid and the other is considered an activation drug. The sleep aid effect of Elavil is really a side effect of the drug. Other drugs are known to cause high blood pressure, liver problems, headaches, etc. but they may also be causing other side effects such as increasing serium levels in blood but were never reported since they never caused any problems.

    Now what would reseachers be able to determine? Well for example, if Elavil worked, don't just assume it is a sleep aid or if you do, then prove it. What changes occured in the metabolism when using the drug as compared to not using the drug? If sleep or the drug makes for example the oxygen level in the blood increase, then can an alternate treatment perform the same results. If an alternate treatment to increase oxygen levels relieves the fatigue, then we would be on to something otherwise that is not the problem.

    Now when we talk about diet or exercise, why does it work? What metabolism changes cause the patient to feel better? Does exercise stimulate receptors? If so, which receptors and can a drug be developed to stimulate those receptors?

    Reseachers are still in the dark ages when it comes to sleep and exercise. They do not know why one person can live on a few hours sleep and another needs 8-10 hours per night. Also they do not have more than mimimal understanding as to how sleep or exercise affects metabolism. If reseachers could fully understand how sleep and exercise affects metabolism, major breakthroughs in many deseases would be found. It is my feeling that research in these areas should be heavily funded.

    If it can be determined what is changing in the metabolism, a more directed treatment may be found.

    That is my 2 cents worth.

  2. T-BO

    T-BO New Member

    Hey Mike!

    I agree with your analysis! I believe that docs don't know sh*t about CFS analysis and agree that they should stick to tackling basic ICF. It's like they are biting off more than they can chew!
    I myself suffer from ICF and wonder many times why they try to cure the most "severe" cases first. It just dosen't make sense!
    Also, in regards to another post that you had made, you said that you went to see a CFS specilist had a bad experience but would not reveal his name. I myself am going to see a CFS specialist sometime in may. His name is Dr. Anil Jain and his clinic is in Toronto, Canada. I will have to travel from Winnipeg to go there. I hope that this is not the same doctor that you saw!!!!
    Anyway, I just wanted to say I like your "outside the box" idea. I wish some of these so-called researchers would stop by the immunosupport board to get a CLUE once in a while. Opinions like this could definetly aid in the cure/ treatment of CFS!

    Thanks for your 2 cents MIKE!

    Peace out and God Bless!

  3. Mike

    Mike New Member

    No, the doctor is not the same.
  4. Rene

    Rene New Member

    Not sure if this has been on the board but here is the new Canadian definition and I think it is fantastic!

    Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS
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    The Canadian Expert Consensus Panel has published a medical milestone, the first clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome. This  definition is clearly a vast improvement over the CDC's 1994 Fukuda criteria, which led to misunderstanding in both research and treatment modalities by making "fatigue" a compulsory symptom but by downplaying or making optional the disease's hallmark of post-exertional sickness and other cardinal ME/CFS symptoms. In sharp contrast to the Fukuda criteria, this new clinical case definition makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria. This case definition, which incorporates some of the current research on dysautonomia, cardiac, and immune problems,  was published in the Journal of Chronic Fatigue Syndrome, Vol. 11 (1) 2003.
    For a 39-page excerpt of this document, which includes the diagnostic part of the  ME/CFS case definition in PDF format, click here.  PDF files require the use of an Adobe Acrobat Reader.  If you do not already have one, it is available as a free download here. The complete 109-page article "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols," J of Chronic Fatigue Syndrome, Vol. 11 (1) 2003, pp. 7-116, from which the above linked excerpt was taken, is available for a fee from the Haworth Document Delivery Service -- 1-800-HAWORTH. The complete article contains additional information on treatment protocols and disability issues, as well as the full references. The article can also be ordered on-line here.
    It is summarized as follows:
    1.        POST-EXERTIONAL MALAISE AND FATIGUE: There is a loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen.  A pathologically slow recovery period (it takes more than 24 hours to recover).  Symptoms exacerbated by stress of any kind.  Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level. [Editor's note: The M.E. Society prefers to use "delayed recovery of muscle function," weakness, and faintness rather than "fatigue." Further, we disagree that the muscle dysfunction is "unexplained."  See our M.E. Definitional Framework and researchers' medical explanations on this website.]
    2.       SLEEP DISORDER: Unrefreshing sleep or poor sleep quality; rhythm disturbance.
    3.       PAIN:  Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness.  Pain can be experienced in the muscles, joints, or neck and is sometimes migratory in nature.  Often, there are significant headaches of new type, pattern, or severity.  [Editor's note: neuropathy pain is a common symptom and should be added here as well.]
    4.        NEUROLOGICAL/COGNITIVE MANIFESTATIONS:  Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia.  There may be overload phenomena: informational, cognitive, and sensory overload -- e.g., photophobia and hypersensitivity to noise -- and/or emotional overload which may lead to relapses and/or anxiety.
    AUTONOMIC MANIFESTATIONS: Orthostatic Intolerance: e.g., neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities. [Editor's note: low plasma and/or erythrocyte volume should be added as another explanation for orthostatic intolerance in this disease. We also hold that more cardiac symptoms should be listed such as left-side chest aches and resting tachycardias, which, in addition to low blood volume, have also been documented in the research. The full text of the case definition does suggest 24-hour Holter monitoring, and when tachycardias with T-wave inversions or flattenings are present that they not be labeled as nonspecific since they aid in the diagnosis of ME/CFS. See the above link to access the diagnostic part of the document.]
    NEUROENDOCRINE MANIFESTATIONS: loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability.
    IMMUNE MANIFESTATIONS: tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals.
    6.        The illness persists for at least 6 months.  It usually has an acute onset, but onset also may be gradual.  Preliminary diagnosis may be possible earlier.  The disturbances generally form symptom clusters that are often unique to a particular patient.  The manifestations may fluctuate and change over time.  Symptoms exacerbate with exertion or stress.
        This summary is paraphrased from Dr. Kenny van DeMeirleir's book Chronic Fatigue Syndrome: A Biological Approach, February 2002, CRC Press, pg. 275.  A few edits and suggestions were added by the M.E. Society of America. As we have noted, the M.E. Society of America holds that this is the best case definition so far, although it is not perfect.  Listing more cardiac and neurological symptoms (e.g., chest pain, left-side chest aches, tachycardia, and neuropathy pain), and emphasizing muscle weakness and faintness instead of "fatigue," would have more accurately represented the symptomatology and vastly improved the criteria (please see our M.E. Definitional Framework on this website).  Nevertheless, the Canadian Consensus Panel clinical case definition more accurately represents the experience and manifestations of the disease than other current case definitions. Again, for the 30-page diagnostic ME/CFS case definition click here.
    Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Panel
    1. Dr. Bruce M. Carruthers, lead author of the consensus document; co-author of the draft of the original version of the ME/CFS clinical definition, diagnostic and treatment protocols document; internal medicine.
    2. Dr. Anil Kumar Jain co-author of the draft the original version of the ME/CFS consensus document, affiliate of Ottawa Hospital, Ontario.
    3. Dr. Kenny L. De Meirleir, Professor Physiology and Medicine, Vrije Universiteit Brussel, Brussels, Belgium; ME/CFS researcher and clinician; organizer of the World Congress on Chronic Fatigue Syndrome and Related Disorders; a board member of the American Association for Chronic Fatigue Syndrome; and co-editor of Chronic Fatigue Syndrome: Critical Reviews and Clinical Advances (Haworth)
    4. Dr. Daniel L. Peterson, affiliate of the Sierra Internal Medicine Associates in Incline Village, Nevada; ME/CFS researcher and clinician; a board member of the American Association for Chronic Fatigue Syndrome; and member of the International Chronic Fatigue Syndrome Study Group
    5. Dr. Nancy G. Klimas, Clinical Professor of Medicine in Microbiology/Immunology/Allergy and Psychology, University of Miami School of Medicine; ME/CFS researcher and clinician; a board member of the American Association for Chronic Fatigue Syndrome; and member of the federal CFS Coordinating Committee
    6. Dr. A. Martin Lerner, staff physician at William Beaumont Hospital in Royal Oak, Michigan; Clinical professor and former chief of the Division of Infectious Diseases at Wayne State University's School of Medicine; and ME/CFS researcher and clinician
    7. Dr. Alison C. Bested, haematological pathologist; former head of the Division of Haematology and Immunology at the Toronto East General and Orthopaedic Hospital; affiliate of the Environmental Health Clinic and Sunnybrrok & Women's College Health Sciences Centre, Toronto, Ontario; ME/CFS researcher and clinician
    8. Dr. Pierre Flor-Henry, Clinical Professor of Psychiatry, University of Alberta; Clinical Director of General Psychiatry and Director of the Clinical Diagnostic and Research Centre, both based at Alberta Hospital in Edmonton, Alberta, Canada; ME/CFS brain researcher
    9. Dr. Pradip Joshi, internal medicine, Clinical Associate Professor of Medicine at Memorial University of Newfoundland in St. John's, Canada
    10. Dr. A. C. Peter Powles, Professor Emeritus, Faculty of Health Science, McMasters University, Hamilton; Professor, Faculty of Medicine, University of Toronto; Chief of Medicine and Sleep Disorders Consultant, St. Joseph's Health Centre, Toronto; Sleep Disorder Consultant at the Sleep Disorder Clinic at St. Joseph's Healthcare, Hamilton, and Central West Sleep Affiliation, Paris, Ontario
    11. Dr. Jeffrey A. Sherkey, family medicine, affiliate of the University Health Network, Toronto, Ontario; and diagnosed with chronic fatigue syndrome nearly 10 years ago
    12. Marjorie I. van de Sande, Consensus Coordinator; and Director of Education for the National ME/FM Action Network, Canada
    This definition was hosted and coordinated by the National ME/FM Action Network of Canada, led by Lydia Nielson. The M.E. Society would like to thank the Canadian group for the many years of work that went into this important project.
        © Copyright 2002 M.E. Society of America
    Page last updated February 16, 2003