# Myths About ME(CFS) Clarified



## M&M (Jan 20, 2002)

This was posted to Co-Cure, and I think I'll add it to the ME/CFS FAQ, I liked it so much! It's short, but really good!********************************A list of CFS myths has been posted to the IACFS website, addressing issues of diagnosis, abnormalities, CBT and exercise etc.http://www.aacfs.org/images/pdfs/myths.pdf


----------



## Clair (Sep 16, 2000)

M&M







anyway we can have the info posted? I can't open PDF's on my PC and downloading Adobe Reader for some reason upsets the temperamental heap of junk!Thanks, Clair


----------



## M&M (Jan 20, 2002)

No problem! ************************************************Myth 1: CFS is a disease defined just by a group of symptoms. There are no objective abnormalities.Many published studies report abnormalities of the central nervous system, autonomicnervous system, and immune system in patients with CFS--abnormalities not present incomparison groups who are healthy or have other fatiguing illnesses.Schondorf R, Freeman R. The importance of orthostatic intolerance in the chronic fatigue syndrome.Am J Med Sci 1999;317(2):117-123.Scott LV, Medbak S, Dinan TG. Blunted adrenocorticotropin and cortisol responses to corticotropicreleasinghormone stimulation in chronic fatigue syndrome. Acta Psychiatr Scand 1998;97:450-457.Patarca R, Klimas N, Sandler D, Garcia MV, Fletcher MA. Interindividual immune status variationpatterns in patients with chronic fatigue syndrome: association with gender and tumor necrosisfactor system. J of CFS 2(1):7-41, 1996.Cannon JG, Angel JB, Abad LW, Vannier E, Mileno MD, Fagioli L, Wolff SM, Komaroff AL. Interleukin-1 beta, interleukin-1 receptor antagonist, and soluble interleukin-1 receptor type II secretion inchronic fatigue syndrome. Journal of Clinical Immunology 17(3):253-61, 1997.De Meirleir, K., Bisbal, C., Campine, I., De Becker, P., Salehzada, T., Demettre, E., Lebleu, B.(2000). A 37 kDa 2-5A binding protein as a potential biochemical marker for chronic fatiguesyndrome. The American Journal of Medicine, 108, 99-105Natelson, B.H., Weaver, S.A., Tseng, C-L., & Ottenweller, J.E. (2005). Spinal fluid abnormalities inpatients with chronic fatigue syndrome. Clinical and Diagnostic Laboratory Immunology, 12, 52-55.Lange, G., Steffner, J., Cook, D.B., Bly, B.M., Christodoulou, C., Liu, W.C., Deluca, J., & Natelson, B.H.(2005). Objective evidence of cognitive complaints in chronic fatigue syndrome: A BOLD fMRIstudy of verbal working memory. Neuroimage, 26(2), 513-524.Hanson, S.J., Gause, W., & Natelson, B. (2001). Detection of immunologically significant factorsfor chronic fatigue syndrome using neural-network classifiers. Clinical and DiagnosticLaboratory Immunology, 8, 658-662.Peckerman, A., LaManca, J.J., Dahl, K.A., Chemitiganti, R, Qureishi, B. Natelson, B.H.(2003). Abnormal impedance cardiography predicts symptom severity in chronic fatiguesyndrome. The American Journal of the Medical Sciences, 2003, 326(2), 55-60.Jason, L.A., Corradi, K., Torres-Harding, S., Taylor, R.R., & King, C. (2005). Chronic fatigue syndrome:The need for subtypes. Neuropsychology Review, 15, 29-58.Myth 2: People with CFS who think they are suffering from a physical illness have a worse prognosis, which just goes to show that it is their perception of a physical cause for their illness that is keeping them from functioning normally.It is more likely that people who think they are suffering from a physical illness have aworse prognosis because they are correct in recognizing that they have a physical illness,one that doctors do not yet have effective treatments for.Jason, L.A., Fennell, P., Taylor, R.R. (Editors)(2003). Handbook of chronic fatigue syndrome. NewYork: John Wiley & Sons, Inc.Myth 3: Whenever one research group finds a biological abnormality in patients with CFS, another research group can't find it.With research on virtually all illnesses, there are always some reports in the researchliterature that conflict. The question with CFS or any illness is: Counting all of thepublished reports, and the numbers of patients in all of these reports, do the greatmajority of reports involving the great majority of patients find objective biologicalabnormalities? The answer for CFS, with regard to studies of the nervous system andimmune system, is yes.Komaroff, A.L. (2000). The biology of chronic fatigue syndrome. American Journal of Medicine,108, 169-171.Evengard, B., Schacterle, R.S., & Komaroff, A.L. (1999). Chronic fatigue syndrome: New insightsand old ignorance. Journal of Internal Medicine, 246, 455-469.Myth 4: CFS only affects white and higher income individuals, and is a relatively rare disorder.Recent evidence from community prevalence studies indicates that CFS is not a YUPPIEdisease, and in fact, it occurs more often among Latino and African-American minoritygroups and those with lower incomes. CFS affects from 800,000 to one millionindividuals in the US, and thus represents one of the more common chronic healthconditions.Reyes, M., Nisenbaum, R., Hoaglin, D.C., Unger, E.R., Emmons, C., Randall, B., Stewart, G.,Abbey, S., Jones, J. F., Gantz, N., Minden, S., & Reeves, W.C. (2003) Prevalence andincidence of chronic fatigue syndrome in Wichita, Kansas. Archives of Internal Medicine,163, 1530-1536.Jason, L.A., Richman, J.A., Rademaker, A.W., Jordan, K.M., Plioplys, A.V., Taylor, R., McCready,W., Huang, C., & Plioplys, S. (1999). A community-based study of chronic fatiguesyndrome. Archives of Internal Medicine. 159, 2129-2137.Myth 5: Cognitive behavior therapy interventions can cure CFS.Cognitive behavior therapy is widely used to help people cope with chronic illnesses,both â€œphysicalâ€ illnesses and psychological illnesses. While these types of psychologicalinterventions can help patients with CFS cope better with their symptoms and deal withthe consequences of having a chronic health problem, these types of intervention do notcure the illness.Van Hoof, E. (2004). Cognitive behavioral therapy as cure-all for CFS. Journal of Chronic FatigueSyndrome, 11, 43-47.Myth 6: Patients with CFS are either lazy or malingering.There is no truth to this statement, and many patients with this condition would likenothing better than to have their old lifestyle back. They are very motivated and often goto many physicians to find a way of getting better.Friedberg, F., & Jason, L.A. (1998). Understanding chronic fatigue syndrome: An empirical guideto assessment and treatment. Washington, D.C.: American Psychological Association.Myth 7: All cases of CFS are caused by the Epstein-Barr Virus (EBV).These are common misconceptions among primary care providers. The onset of CFS issometimes but not always linked with the recent presence of an infection. CFS has beenreported as following acute mononucleosis (a viral infection like EBV), Lyme disease (abacterial infection) and Q fever (an infection with a different type of infectious agent).Komaroff, A.L. (2000b). The physical basis of CFS. The CFIDS Research Review, 1(2), 1-3, 11.Myth 8: Patients with CFS can be cured by exercise.It is a myth that patients with CFS can be cured by exercise, but it is also a myth that noone with CFS can ever benefit from some physical activity. For some patients, acarefully monitored program incorporating paced and non-fatiguing activity can be usedto strengthen and condition muscles. But it is worth noting that Black, Oâ€™Connor, andMcCully (2005) recently found that with an average 28% increase over baseline levels ofdaily physical activity over for a four week period, patients with CFS indicated they hadworsening overall mood, muscle pain intensity and time spent each day with fatigue.Black, C.D., Oâ€™Connor, P.J., & McCully, K.K. (2005). Increased daily physical activity and fatiguesymptoms in chronic fatigue syndrome. Dynamic Medicine, 4:3 (doi:10;1186/1476-5918-4-3.Edmonds, M., McGuire, H., & Price, J. (2004). Exercise therapy for chronic fatigue syndrome. TheCochrane Library, Issue 3, 1-22.Myth 9: CFS is difficult to diagnose.Actually it is pretty straightforward to diagnose when familiar with the case definition. Itis, however, important to determine whether the Fukuda et al. (1994) or the Canadiancase definition of ME/CFS is being used (Caruthers et al., 2003).Fukuda, K., Straus, S.E., Hickie, I., Sharpe, M.C., Dobbins, J.G., & Komaroff, A. (1994). TheChronic Fatigue Syndrome: A comprehensive approach to its definition and study. Annals ofInternal Medicine, 121, 953-959.Carruthers, B.M., Jain, A.K., DeMeirleir, K.L., Peterson, D.L., Klimas, N.G., Lerner,A.M., Bested, A.C., Flor-Henry, P., Joshi, P., Powles, A.C.P., Sherkey, J.A., &van de Sande, M.I. (2003). Myalgic encephalomyelitis/chronic fatiguesyndrome: Clinical working case definition, diagnostic and treatments protocols.Journal of Chronic Fatigue Syndrome, 11, 7-115.


----------

