> [An example of information that is in medical textbooks has been scanned
> by an individual and saved as pdfs (see links below). Pages 1281-1285 are
> in the section written by Profs. Peter Denton White and Anthony W Clare.
> Peter White amongst other things was one of the external peer reviewers of
> the CDC's CFS program recently. The files can be seen at:
> 8028 KB http://rapidshare.com/files/146351947/Kumar_1-7.pdf [AOL: > href="http://rapidshare.com/files/146351947/Kumar_1-7.pdf">Here 2959
> [AOL: > href="http://rapidshare.com/files/146351948/Kumar_8-10.pdf">Here 3645
> http://rapidshare.com/files/146351949/Kumar_11-13.pdf [AOL: > href="http://rapidshare.com/files/146351949/Kumar_11-13.pdf">Here. I'm
> alos appending the information in plain text. Tom]
> From the minutes of of the CFSAC meeting on Oct 28, 2008
> [AOL: > href="http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20081028min.pdf">He
> Dr. Jason's Presentation
> Dr. Jason said that he also planned to give his presentation at the Reno
> IACFS/ME conference.
> He noted that there are about 200 publications each year on CFS, according
> to Freidberg and Associates. It is unclear how CFS is represented in the
> published literature, particularly with medical textbooks. Medical
> are important because they are:
> . A cornerstone in the training of medical staff and students.
> . A main source of references and reviews for medical professionals.
> . A source of information on coding and treating a variety of illnesses.
> The objective of Dr. Jason's study was to evaluate the coverage of CFS in
> medical textbooks to determine the extent and comprehensiveness of CFS
> Textbooks were gathered from a number of sources including university
> medical school libraries and medical school book stores. The study looked
> 129 textbooks in different specialty areas. The areas of interest in the
> study were the number of pages and percent of space allotted to CFS. Dr.
> Jason discussed pages in his presentation. The comprehensiveness and
> of representation of CFS information was included, and CFS was compared
> to other illnesses.
> Page representation:
> . Looked at a total of 140,552 pages in 129 textbooks. Always took the
> recent version of a textbook, primarily within the last seven or eight
> . CFS was represented on 125 pages, or .089 percent of the potential pages
> . Holistic, psychiatry, and internal medicine texts had the highest
> percentage of mention of CFS; endocrinology, obstetrics, and emergency
> medicine the least.
> If CFS was mentioned, the study also examined information concerning:
> . The illness ideology.
> . The probability of Axis 1 disorder.
> . Treatment options.
> . Prevalence rate.
> . Inclusion of ME terminology.
> . 53 textbooks (41 percent) of the 129 textbooks had some mention of CFS.
> The problem, of course, was that there was very little mention.
> . 42 textbooks (32 percent) had something about etiology. Sometimes it was
> biogenic, sometimes psychogenic, sometimes both.
> . 17 textbooks (13 percent) mentioned the high probability of Axis 1
> Disorder [a major psychiatric problem].
> . 25 textbooks (19 percent) mentioned some criteria.
> . 37 textbooks (28.7 percent) indicated some treatment associated with
> The most common were cognitive behavior therapy, anti-depressants, graded
> exercise or exercise, and supplements.
> . Only 18 textbooks (14 percent) had any mention of prevalence rates.
> . Only 19 books (14.8 percent) had any mention of ME terminology.
> Summarizing this part of the study: Critical domains within CFS are not
> represented in medical textbooks, either in terms of etiology, criterion,
> treatment options.
> Illness Comparison
> Next the study analyzed a random sample of 45 books from the 129 to
> CFS with illnesses that are much more prevalent-cancer and diabetes-and
> illnesses that are less prevalent-MS [multiple sclerosis] and Lyme
> Even the illnesses that are less prevalent than CFS have greater coverage
> medical textbooks. CFS appeared in 24 percent of the 41,922 pages while
> disease appeared in 61.8 percent and MS, 53 percent.>
> Major findings:
> . CFS is underrepresented in medical textbooks.
> . CFS is also given fewer pages than diseases that are less prevalent.
> Why does this matter?
> . 77 percent of CFS patients reported they had experienced a negative
> interaction with a healthcare provider.
> . 66 percent believe that their condition had been made worse after
> care from their doctors.
> . Family physicians feel the continuing education and training they
> leave them unable to diagnose and manage CFS.
> . 48 percent of general practitioners did not feel confident that they
> diagnose CFS.
> . Healthcare professionals need to be adequately trained and provided with
> up-to-date, non-biased information in their textbooks.
> . Medical textbooks may be a critical component in raising CFS awareness
> there is a clear need for this illness to receive more representation.
> =========== As mentioned above, a sample medical textbook entry, this one
> jointly written by CFS "expert" Prof Peter White no less (not a
> recommendation from me) ===============
> Kumar and Clark - Clinical Medicine
> By Parveen Kumar, CBE, BSc, MD, FRCP, FRCP (Edin), Professor of
> Clinical Medical Education, Barts and The London, Queen Mary's School
> of Medicine and Dentistry, University of London, and Honorary
> Consultant Physician and Gastroenterologist, Barts and The London NHS
> Trust, London, UK; and Michael Clark, MD, FRCP, Honorary Senior
> Lecturer, Barts and The London, Queen Mary's School of Medicine and
> Denistry, University of London, UK
> ISBN 0702027634 . Paperback . 1528 Pages . 1283 Illustrations
> Saunders . Published August 2005
> Contributors include:
> Anthony W Clare MD FRCPI FRCP FRCPsych MPhil
> Professor of Clinical Psychiatry
> Trinity College, Dublin;
> Medical Director
> St Patrick's Hospital, Dublin, Ireland
> Peter D White MD FRCP FRCPsych
> Senior Lecturer in Psychological Medicine, Honorary Consultant in
> Liaison Psychiatry
> Barts and The London, Queen Mary's School of Medicine and Dentistry,
> University of London, UK
> We all have illness behaviour when we choose what to do about a
> symptom. Going to see a doctor is generally more likely with more
> severe and more numerous symptoms and greater distress. It is also
> more likely in introspective individuals who focus on their health.
> Abnormal illness behaviour occurs when there is a discrepancy between
> the objective somatic pathology present and the patient's response to
> it, in spite of adequate medical investigation arid explanation.
> FUNCTIONAL OR PSYCHOSOMATIC DISORDERS: MEDICALLY UNEXPLAINED SYMPTOMS
> `Functional' disorders are illnesses in which there is no obvious
> pathology or anatomical change in an organ (thus in contrast
> to `organic and there is a presumed dysfunction in an organ or
> system. The word psycho-somatic has had several meanings, including
> psychogenic, `all in the mind'; imaginary and malingering. The modern
> meaning is that psychosomatic disorders are syndromes of unknown
> aetiology in which both physical and psychological factors are likely
> to be causative, The psychiatric classification of these disorders
> would be somatoform disorders, but they do not fit easily within
> either medical or psychiatric classification systems, since they
> occupy the hinterland between them. Medically unexplained symptoms
> and syndromes are very common in both primary care and the general
> hospital (over half the outpatients in gastroenterology and neurology
> clinics have these syndromes). Because orthodox medicine has not been
> particularly effective in treating or understanding these disorders,
> many patients perceive their doctors as unsympathetic and seek out
> complementary treatments of uncertain efficacy. Examples of
> functional disorders are shown in Table 22.4.
> Because epidemiological studies suggest that having one of these
> syndromes significantly increases the risk of having another, some
> doctors believe that these syndromes represent different
> manifestations in time of `one functional syndrome', which is
> indicative of a somatization process. Functional disorders also have
> a significant association with psychiatric disorders, especially
> depressive and panic disorders as well as phobias. Against this view
> is the evidence that the majority of primary care patients with most
> of these disorders do not have either a psychiatric disorder or other
> functional disorders.
> Table 224
> Functional or psychosomatic syndromes (medically unexplained symptoms)
> `Tension' headaches
> Atypical facial pain
> Atypical chest pain
> Fibromyalgia (chronic
> widespread pain)
> Other chronic pain syndromes
> Chronic or post-viral fatigue syndrome
> Multiple chemical sensitMty
> Premenstrual syndrome
> Irritable or functional bowel syndrome
> Irritable bladder syndrome
> It also seems that it requires a major stress or a psychiatric
> disorder in order for such sufferers to attend their doctor for help,
> which might explain why doctors are so impressed with the
> associations with stress and psychiatric disorders. Doctors have
> historically tended to diagnose `stress' or `psychosomatic disorders'
> in patients with symptoms that they cannot explain. History is full
> of such disorders being reclassified as research clarifies the
> pathology. A recent example is writer's cramp (p. 1233) which most
> neurologists now agree is a dystonia rather than a neurosis.
> Chronic fatigue syndrome (CFS)
> There has probably been more controversy over the existence and
> aetiology of CFS than any other functional syndrome in recent years.
> This is reflected in its uncertain classification as neurasthenia in
> the psychiatric classification and myalgic encephalomyelitis (ME)
> under neurological disorders. There is good evidence for this
> syndrome, although the diagnosis is made clinically and by exclusion
> of other fatiguing disorders. Its prevalence is 0.5% in the UK,
> although abnormal fatigue as a symptom occurs in 10-20%. It occurs
> most commonly in women between the ages of 20 and 50 years old, The
> cardinal symptom is chronic fatigue made worse by minimal exertion.
> The fatigue is usually both physical and mental, with associated poor
> concentration, impaired registration of memory, irritability,
> alteration in sleep pattern (either insomnia or hypersomnia), and
> muscular pain. The name myalgic encephalomyelitis (ME) is
> decreasingly used within medicine because it implies a pathology for
> which there is no evidence.
> Functional disorders often have aetiological factors in common with
> each other (see Table 22.5), as well as more specific aetiologies.
> For instance, CFS can be triggered by certain infections, such as
> infectious mononucleosis and viral hepatitis. About 10% of patients
> with infectious mononucleosis have CFS 6 months after the infectious
> onset, yet there is no evidence of persistent infection in these
> patients. Those fatigue states which clearly do follow on a viral
> infection can be classified as post-viral fatigue syndromes. Other
> aetiological factors include physical inactivity arid sleep
> difficulties. immune and endocrine abnormalities noted in CFS may be
> secondary to the inactivity or sleep disturbance commonly seen in
> patients. Mood disorders are present in a large minority of patients,
> and can cause problems in diagnosis because of the large overlap in
> symptoms. These mood disorders may be secondary, independent (co-
> morbid), or primary with a misdiagnosis of CFS. The role of stress is
> uncertain, with some indication that the influence of stress is
> mediated through consequent psychiatric disorders exacerbating
> fatigue, rather than any direct effect.
> The general principles of the management of functional disorders are
> given in Box 22.7. Specific management of CFS should include a
> mutually agreed and supervised programme of gradual increasing
> activity However, few patients regard themselves as cured after
> treatment. It is sometimes difficult to persuade a patient to accept
> what are inappropriately perceived as psychological therapies' for
> such a physically manifested condition. Antidepressants do not work
> in the absence of a mood disorder or insomnia.
> This is poor without treatment, with less than 10% ot hospital
> attenders recovered after 1 year Outcome is worse with increasing
> age. co-morbid mood disorder, and the conviction that the illness is
> entirely physical.
> Table 22.5 Aetiological factors commonly seen in functional disorders
> Perfectionist obsessional and introspective personality
> Childhood traumas (physical and sexual abuse)
> Similar illnesses in first-degree relatives
> Precipitating (triggering)
> Chronic fatigue syndrome (CFS)
> irritable bowel syndrome (IBS)
> Psychologically traumatic events (especially accidents)
> Physical Injuries ('fibromyalgia and other chronic pain syndromes)
> Life events that precipitate changed behaviours (e.g. going off sick)
> Incidents where the patient believes others are responsible
> Perpetuating ( maintaining)
> Inactivity with consequent physiological adaptation (CFS
> and 'fibromyalgia').
> Avoidant behaviours - multiple chemical sensitivities (MCS) CFS
> Maladaptive illness beliefs (that maintain maladaptive behaviours)
> Excessive dietary restrictions (`food allergies')
> Stimulant drugs
> Sleep disturbance
> Mood disorders.
> Somatization disorder
> Unresolved anger or guilt
> Unresolved compensation
> Box 22.7 Management of functional disorders
> The first principles is the identification and treatment of
> maintaining factors (e.g. dysfunctional beliefs and behaviours mood
> and sleep disorders)
> Explanation of ill-health, including diagnosis and causes
> Education about management (including self-help leaflets) .
> Stopping drugs (e. g. caffeine causing insomnia, analgesics causing
> Rehabilitative therapies
> Cognitive behaviour therapy (to challenge unhelpful beliefs and
> change coping strategies)
> Supervised and graded exercise therapy for approximately 3 months (to
> reduce inactivity and improve fitness)
> Specific antidepressants for mood disorders,analgesia and sleep
> disturbance .
> Symptomatic medicines (e.g. appropriate analgesia, taken only when