Wednesday, December 31, 2008

CFS and ME in Medical Textbooks

Thanks to Tom for this one. How can doctors fix what they haven't been taught? It's my own experience that they're being taught things about CFS that were disproven 20 years ago. It's not depression, psychotropic drugs don't work, there are biological abnormalities (if only the right tests were done...) But the doctors aren't being taught that, so how can they help us????

> [An example of information that is in medical textbooks has been scanned
> in
> 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 [AOL: > href="">Here 2959
> KB
> [AOL: > href="">Here 3645
> KB
> [AOL: > href="">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="">He
> re]
> 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
> textbooks
> 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
> information.
> Textbooks were gathered from a number of sources including university
> medical school libraries and medical school book stores. The study looked
> at
> 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
> extent
> of representation of CFS information was included, and CFS was compared
> with
> to other illnesses.
> Page representation:
> . Looked at a total of 140,552 pages in 129 textbooks. Always took the
> most
> recent version of a textbook, primarily within the last seven or eight
> years.
> . CFS was represented on 125 pages, or .089 percent of the potential pages
> examined.
> . 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.
> Results:
> . 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
> CFS.
> 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
> well
> represented in medical textbooks, either in terms of etiology, criterion,
> or
> treatment options.
> Illness Comparison
> Next the study analyzed a random sample of 45 books from the 129 to
> compare
> CFS with illnesses that are much more prevalent-cancer and diabetes-and
> with
> illnesses that are less prevalent-MS [multiple sclerosis] and Lyme
> disease.
> Even the illnesses that are less prevalent than CFS have greater coverage
> in
> medical textbooks. CFS appeared in 24 percent of the 41,922 pages while
> Lyme
> 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
> seeking
> care from their doctors.

> . Family physicians feel the continuing education and training they
> received
> leave them unable to diagnose and manage CFS.
> . 48 percent of general practitioners did not feel confident that they
> could
> diagnose CFS.
> Conclusions
> . 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
> and
> 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' 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.
> Aetiology
> 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.
> Management
> 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.
> Prognosis
> 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
> Predisposing
> Perfectionist obsessional and introspective personality
> Childhood traumas (physical and sexual abuse)
> Similar illnesses in first-degree relatives
> Precipitating (triggering)
> Infections
> 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)
> (CFS)
> 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)
> Communication
> Explanation of ill-health, including diagnosis and causes
> Education about management (including self-help leaflets) .
> Stopping drugs (e. g. caffeine causing insomnia, analgesics causing
> dependence)
> 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)
> Pharmacotherapies
> Specific antidepressants for mood disorders,analgesia and sleep
> disturbance .
> Symptomatic medicines (e.g. appropriate analgesia, taken only when
> necessary)

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