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Management advice for children with chronic fatigue syndrome: a systematic study of information from the internet

Published online by Cambridge University Press:  13 June 2014

Ian Partridge
Affiliation:
Lime Trees, Child, Adolescent and Family Unit, 31 Shipton Road, York YO30 5RF, England

Abstract

Objectives: Parents often present practising clinicians who see children with chronic fatigue syndrome with printouts from the internet. These are then brought into the discussion about the management and aetiology of this debilitating condition. We set out to systematically study the information on the internet on this subject and to explore the diversity of advice in relation to current research knowledge.

Method: Systematic search by means of the internet browser Netscape Navigator and search engines AltaVista and Yahoo! Advice about levels of rest, exercise, medication, psychological interventions and suggestions about return to school is critically compared with current research evidence.

Results: Thirteen websites were accessed. All have some treatment advice. Six offer conflicting advice about levels of rest, with two suggesting large amounts of rest, two suggesting some rest and two suggesting graded exercise. Nine suggest medications (with a wide variety of pharmacological activities) despite the lack of research evidence showing a significant contribution from medication. Four suggest psychological treatments but some advise that it is unnecessary despite the established evidence in chronic fatigue (and other chronic illnesses) that appropriate psychological treatments are helpful. There are a wide variety of differing diets recommended.

Conclusions: Few websites provide useful management advice. Advice offered is often in conflict. Some of the advice is either contrary to current research evidence or not supported by it. This raises concerns about inaccurate information reaching families who have a child with chronic fatigue syndrome, with potentially damaging consequences. This suggests a need for a debate about the availability and validation of health related information on the internet.

Type
Audits
Copyright
Copyright © Cambridge University Press 1999

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References

1.Pallen, M. The world wide web. BMJ 1995; 311: 1552–6.CrossRefGoogle ScholarPubMed
2.Kassirer, JP. The next transformation in the delivery of health care. N Engl J Med 1995; 332: 52–4.CrossRefGoogle ScholarPubMed
3.Widman, LE, Tong, DA. Requests for medical advice from patients and families to health care providers who publish on the world wide web. Arch Intern Med 1997; 157: 209–12.CrossRefGoogle ScholarPubMed
4.Silberg, WM, Lundberg, GD, Musacchio, RA. Assessing, controlling and assuring the quality of medical information on the internet. JAMA 1997; 277: 1244–5.CrossRefGoogle ScholarPubMed
5.Impicciatore, P, Pandolfini, C, Casella, N, Bonati, M. Reliability of health information for the public on the world wide web: systematic survey of advice on managing fever in children at home. BMJ 1997; 314: 1875–9.CrossRefGoogle ScholarPubMed
6.Report of the working party of the Royal Colleges of Physicians, Psychiatrists and General Practitioners. Chronic fatigue Syndrome. Cr54. London: RCP October 1996.Google Scholar
7.Straus, SE. Chronic Fatigue Syndrome. BMJ 1996; 313: 831–2.CrossRefGoogle ScholarPubMed
8.Carter, BD, Edwards, JF, Kronenberger, WG, Michalczyk, , Marshall, GS. Case control study of chronic fatigue in pediatric patients. Pediatrics 1995; 95(2): 179–86.CrossRefGoogle ScholarPubMed
9.Vereker, MI. Chronic fatigue syndrome: a joint paediatric-psychiatric approach. Arch Dis Childhood 1992, 67: 550–5.CrossRefGoogle ScholarPubMed
10.Rikard-Bell, CJ, Waters, BGH. Psychosocial management of Chronic Fatigue Syndrome in Adolescence. Austr NZ J Psychiat 1992; 26: 6472.CrossRefGoogle ScholarPubMed
11.Marshall, GS, Gesser, RM, Yamanishi, K, Starr, SE. Chronic fatigue in children: clinical features, Epstein-Barr virus and human herpes virus 6 serology and long-term follow up. Pediatric Infect Dis J 1991; 10: 287–90.CrossRefGoogle ScholarPubMed
12.Feder, H, Dworkin, P, Orkin, C. Outcome of 48 pediatric patients with chronic fatigue; a clinical experience. Arch Fam Med 1994; 3: 1049–55.CrossRefGoogle ScholarPubMed
13.Dale, JK, Straus, SE. The Chronic Fatigue Syndrome: considerations relevant to children and adolescents. Adv Ped Infect Dis 1992; 7: 6383.Google ScholarPubMed
14.Wessely, S. Chronic fatigue syndrome – the current position: 1. Background, epidemiology and aetiology. Prim Care Psychiatry 1995; 1: 2130.Google Scholar
15.Wessely, S. Chronic fatigue syndrome – the current position: 2. assessment and treatment. Prim Care Psychiatry 1995; 1: 8798.Google Scholar
16.Landay, AL, Jessop, C, Lennette, ET, Levy, JA. Chronic Fatigue Syndrome: clinical condition associated with immune activation. Lancet 1991; 338: 707–12.CrossRefGoogle ScholarPubMed
17.Straus, SE, Dale, JK, Peter, JB, Dianarello, CA. Circulating lymphokine levels in chronic fatigue syndrome. J Infect Dis 1989; 160: 1085–6.CrossRefGoogle ScholarPubMed
18.Klimas, NG, Salvato, FR, Morgan, R, Fletcher, MA. Immunologic abnormalities in chronic fatigue syndrome. J Clin Microbiology 1990; 28: 1403–10.CrossRefGoogle ScholarPubMed
19.Subira, ML, Castilla, A, Civeira, M, Prieto, J. Deficient display of CD3 on lymphocytes of patients with chronic fatigue syndrome. J Infect Dis 1989; 160: 165–6.CrossRefGoogle ScholarPubMed
20.Schmitt, DA, Schaffer, L, Taylor, GRet al.Use of bed rest and head down tilt to stimulate spaceflight induce immune system changes. J Interferon and Cytokine Res 1996; 16: 151–7.CrossRefGoogle ScholarPubMed
21.Demitrack, MA, Dale, JK, Straus, SEet al.Evidence for impaired activation of hypothalamic-pituitary-adrenal axis in patients with Chronic Fatigue Syndrome. J Clin Endocrinology and Metabolism 1991; 73: 1224–34.CrossRefGoogle ScholarPubMed
22.Bakheit, AMO, Behan, PO, Dinan, TG, Gray, CE, O'Keane, V. Possible upregulation of hypothalamic 5 hydroxy-tryptamine receptors in patients with postviral fatigue syndrome. BMJ 1992; 304: 1010–2.CrossRefGoogle ScholarPubMed
23.Beard, GM. Neurasthenia or nervous exhaustion. Bos Med Surg J 1869; 80: 213–21.Google Scholar
24.Greenleaf, JE. Physiological responses to prolonged bed rest and fluid emersion in humans. J App Physiol: Respiratory, Environmental and Exercise Physiology 1984; 57: 619–33.CrossRefGoogle Scholar
25.Ferrando, AA, Stuart, CA, Brunder, DG, Hillman, GR. Magnetic resonance imaging quantitation of changes in muscle volume during seven days of strict bed rest. Aviation Space and Environmental Medicine 1995; 66: 976–81.Google Scholar
26.Bloomfield, SA. Changes in musculoskeletal structure and function with prolonged bed rest. Medicine and Science in Sports and Exercise 1997; 29: 197206.CrossRefGoogle ScholarPubMed
27.Appell, HJ. Muscular atrophy following immobilisation. A review. Sports Med 1990; 10:4258.CrossRefGoogle ScholarPubMed
28.Booth, FW, Lou, W, Hamilton, MT, Yan, Z. Cytochrome c mRNA in skeletal muscles of immobilised limbs. J App Physiology 1996; 81: 1941–5.CrossRefGoogle ScholarPubMed
29.Sargeant, AJ, Davies, CT, Edwards, RH, Maunder, C, Young, A. Functional and structural changes after disuse of human muscle. Clin Sci Mol Med 1977; 52: 337–42.Google ScholarPubMed
30.Duchateau, J. Bed rest induces neural and contractile adaptations in triceps surae. Medicine and Science in Sports and Exercise 1995; 27: 1581–9.Google ScholarPubMed
31.Lask, B, Dillon, MJ. Post-viral fatigue syndrome (Editorial). Arch Dis Childhood 1990; 65: 1198.CrossRefGoogle Scholar
32.Haruna, Y, Suzuki, Y, Kawakisbo, K, Yanagibori, R, Gunji, A. Decremental reset in basal metabolism during 20 days rest. Acta Physiol Scand Suppl 1994; 616: 43–9.Google Scholar
33.Wessley, S, David, A, Butler, S, Chalder, T. The management of chronic (post-viral) fatigue syndrome. J R C G P 1989; 39: 26–9.Google Scholar
34.Sidebotham, P, Skeldon, I, Chambers, T, Clements, S, Culling, J. Refractory chronic fatigue syndrome in adolescence. Br J Hosp Med 1994; 51:110–2.Google ScholarPubMed
35.Wachsmuth, JR, MacMillan, HL. Effective treatment for an adolescent with Chronic fatigue syndrome. Clin Pediatrics 1991;30(8): 488–90.CrossRefGoogle ScholarPubMed
36.Cox, D, Findley, L. Chronic fatigue syndrome in adolescence (letter). Br J Hosp Med 1994; 51: 614.Google Scholar
37.Fulcher, KY, White, PD. Randomised controlled trial of graded exercise in patients with the Chronic Fatigue Syndrome. BMJ 1997; 314: 1647–53.CrossRefGoogle ScholarPubMed
38.Wilson, A, Hickie, I, Lloyd, A, Wakefield, D. The treatment of chronic fatigue syndrome: science and speculation. Am J Med 1994; 96: 544–50.CrossRefGoogle ScholarPubMed
39.Smith, MS, Mitchell, J, Corey, Let al.Chronic fatigue in adolescents. Pediatrics 1991; 88(2): 195202.CrossRefGoogle ScholarPubMed
40.Straus, SE, Dale, JK, Tobi, Met al.Acyclovir treatment of the chronic fatigue syndrome. Lack of efficacy in a placebo controlled trial. New Eng J Med 1988; 319: 1692–7.CrossRefGoogle Scholar
41.Peterson, PK, Shepard, J, Macres, Met al.A controlled trial of intravenous immunoglobulin G in chronic fatigue syndrome. Am J Med 1990; 89: 554–60.CrossRefGoogle ScholarPubMed
42.Lloyd, A, Hickie, I, Wakefield, Det al.A double blind, placebo controlled trial of intravenous immunoglobulin therapy in patients with chronic fatigue syndrome. Am J Med 1990; 89: 561–8.CrossRefGoogle ScholarPubMed
43.Carter, BD, Kronenberger, WG, Edwards, JF, Michalczyk, L, Marshall, GS. Differential diagnosis of chronic fatigue in children: behavioural and emotional dimensions. Dev Behav Pediatrics 1996; 17: 1621.CrossRefGoogle ScholarPubMed
44.Walford, GA, Nelson, WM, McCluskey, DR. Fatigue, depression and social adjustment in chronic fatigue syndrome. Arch Dis Child 1993; 68: 384–8.CrossRefGoogle ScholarPubMed
45.Strickland, MCDepression, chronic fatigue syndrome, and the adolescent. Prim Care 1991; 18:259–70.Google ScholarPubMed
46.Bell, D. Chronic fatigue syndrome in children. J Chron Fatigue Synd 1995; 1: 933.CrossRefGoogle Scholar
47.Smith, MS, Mitchell, J, Corey, Let al.Chronic fatigue in adolescents. Pediatrics 1991; 88: 195202.CrossRefGoogle ScholarPubMed
48.Galpine, JF, Brady, C. Benign myalgic encephalomyelitis. Lancet 1957; 1: 757–8.CrossRefGoogle Scholar
49.Pipe, R, Wait, M. Family therapy in the treatment of chronic fatigue syndrome in adolescence. ACPP Rev Newsletter 1995; 17(1): 916.Google Scholar
50.Arav-Boger, R, Spirer, Z. Chronic fatigue syndrome: pediatric aspects. Isr J Med Sci 1995; 31: 330–4.Google ScholarPubMed
51.Marcovitch, H. Managing chronic fatigue syndrome in children. BMJ 1997; 314: 1635–6.CrossRefGoogle ScholarPubMed
52.Jones, JF, Ray, CG, Minnich, LLet al.Evidence for active Epstein-Barr virus infection in patients with persistent, unexplained illnesses: elevated anti-early antigen antibodies. Ann Intern Med 1985; 102: 17CrossRefGoogle ScholarPubMed
53.Dowsett, EG, Colby, J. Long-term sickness absence due to ME/CFS in UK schools: an epidemiological study with medical and educational implications. J Chron Fatigue Synd 1997; 3: 2942.CrossRefGoogle Scholar
54.Marshall, GS, Gesser, RM, Yamanishi, Ket al.Chronic fatigue syndrome in children: clinical features, EBV and human herpesvirus-6 serology and long-term follow-up. Proceedings of the 30th Interscience Conference on Antimicrobial Agents and Chemotherapy 1990: 178.Google Scholar
55.Wright, JBD, Cottrell, D. Chronic fatigue syndrome in adolescents and children. Bailliere's Clinical Psychiatry 1997; 3(3): 449–71.Google Scholar