A preliminary investigation of nutritional intake and supplement use in Australians with myalgic encephalomyelitis/chronic fatigue syndrome and the implications on health-related quality of life
Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multisystem illness without a currently recognized pharmacological treatment. Dietary supplementation and modification have been posited as potential management strategies; however, their efficacy is controversial.
Objective: This study aimed to assess the nutritional intake and supplement use of Australian ME/CFS patients and the perceived effect on health-related quality of life (HRQoL) for the first time in an Australian patient population.
Design: Between February 2019 and January 2020, ME/CFS patients across Australia volunteered in this cross-sectional study in response to online advertisements. Eligible respondents were invited to complete three online self-administered questionnaires investigating their supplement use, nutritional intake, and HRQoL. The study participants’ supplement use and nutritional intake were summarized and compared with the population data returned from the Australian Health Survey (2011–2012). Multiple linear regression analysis was also performed to determine the effect of participants’ supplement use and nutrient intake on HRQoL.
Results: Twenty-four eligible ME/CFS patients (54.2% meeting the International Consensus Criteria, 79.2% female, mean age = 43.4 ± 10.5 years) completed the online questionnaires. Supplement use was highly prevalent among the study sample (87.5%) and considerably more common when compared with population data (31.9%). Daily total fats and caffeine intakes were significantly higher among ME/CFS patients when compared with the Australian population (P = 0.009 and P = 0.033, respectively), whereas daily intakes of total carbohydrates and alcohol were significantly lower (both P < 0.001). No consistent trends between nutrition and supplement use with patients’ HRQoL could be identified.
Conclusions: The daily diet and supplement use of ME/CFS patients appear to vary considerably from those of the general Australian population. Although the role of nutritional intake and supplement use on ME/CFS patients’ HRQoL remains unclear, dietary changes and the use of supplements appear to be of value to ME/CFS patients.
- Sotzny F, Blanco J, Capelli E, Castro-Marrero J, Steiner S, Murovska M, et al. Myalgic encephalomyelitis/chronic fatigue syndrome – evidence for an autoimmune disease. Autoimmun Rev 2018; 17(6): 601–9. doi: 10.1016/j.autrev.2018.01.009
- Missailidis D, Annesley SJ, Fisher PR. Pathological mechanisms underlying myalgic encephalomyelitis/chronic fatigue syndrome. Diagnostics (Basel) 2019; 9(3): 80. doi: 10.3390/diagnostics9030080
- Castro-Marrero J, Sáez-Francàs N, Santillo D, Alegre J. Treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis: all roads lead to Rome. Br J Pharmacol 2017; 174(5): 345–69. doi: 10.1111/bph.13702
- Eaton-Fitch N, Johnston SC, Zalewski P, Staines D, Marshall-Gradisnik S. Health-related quality of life in patients with myalgic encephalomyelitis/chronic fatigue syndrome: an Australian cross-sectional study. Qual Life Res 2020; 29(6): 1521–31. doi: 10.1007/s11136-019-02411-6
- Rasa S, Nora-Krukle Z, Henning N, Eliassen E, Shikova E, Harrer T, et al. Chronic viral infections in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). J Transl Med 2018; 16(1): 268. doi: 10.1186/s12967-018-1644-y
- Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, et al. Myalgic encephalomyelitis: international consensus criteria. J Intern Med 2011; 270(4): 327–38. doi: 10.1111/j.1365-2796.2011.02428.x
- Johnston SC, Staines DR, Marshall-Gradisnik SM. Epidemiological characteristics of chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients. Clin Epidemiol 2016; 8: 97–107. doi: 10.2147/CLEP.S96797
- Johnston S, Brenu EW, Staines DR, Marshall-Gradisnik S. The adoption of chronic fatigue syndrome/myalgic encephalomyelitis case definitions to assess prevalence: a systematic review. Ann Epidemiol 2013; 23(6): 371–6. https://www.sciencedirect.com/science/article/pii/S1047279713000938?via%3Dihub
- Chu L, Valencia IJ, Garvert DW, Montoya JG. Onset patterns and course of myalgic encephalomyelitis/chronic fatigue syndrome. Front Pediatr 2019; 7: 12. doi: 10.3389/fped.2019.00012
- Morris G, Maes M, Berk M, Puri BK. Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop? Metab Brain Dis 2019; 34(2): 385–415. doi: 10.1007/s11011-019-0388-6
- Underhill RA. Myalgic encephalomyelitis, chronic fatigue syndrome: an infectious disease. Med Hypotheses 2015; 85(6): 765–73. doi: 10.1016/j.mehy.2015.10.011
- Lim E-J, Son C-G. Review of case definitions for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). J Transl Med 2020; 18(1): 289. doi: 10.1186/s12967-020-02455-0
- Brurberg KG, Fønhus MS, Larun L, Flottorp S, Malterud K. Case definitions for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review. BMJ Open 2014; 4(2): e003973. doi: 10.1136/bmjopen-2013-003973
- Lim E-J, Ahn Y-C, Jang E-S, Lee S-W, Lee S-H, Son C-G. Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). J Transl Med 2020; 18(1): 100. doi: 10.1186/s12967-020-02269-0
- Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L. The health-related quality of life for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PLoS One 2015; 10(7): e0132421. doi: 10.1371/journal.pone.0132421
- Nacul LC, Lacerda EM, Campion P, Pheby D, Drachler MdL, Leite JC, et al. The functional status and well-being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers. BMC Public Health 2011; 11(1): 402. doi: 10.1186/1471-2458-11-402
- Strand EB, Mengshoel AM, Sandvik L, Helland IB, Abraham S, Nes LS. Pain is associated with reduced quality of life and functional status in patients with myalgic encephalomyelitis/chronic fatigue syndrome. Scand J Pain 2018; 19(1): 61–72. doi: 10.1515/sjpain-2018-0095
- Friedberg F, Bateman L, Bested AC, Davenport T, Friedman KJ, Gurwitt A, et al. ME/CFS: a primer for clinical practitioners. 2014 ed. Chicago, IL: International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis; 2014 [cited 19 March 2021]. Available from: https://www.massmecfs.org/images/pdf/Primer_2014.pdf
- Royal Australasian College of Physicians. Chronic fatigue syndrome: clinical practice guidelines – 2002 [Internet]. Sydney: Royal Australasian College of Physicians; 2002 [cited 21 September 2020]. 56 p. Available from: https://www.mja.com.au/system/files/issues/cfs2_2.pdf?fbclid=IwAR3dEhfszBGL8umStplzJb31heovK-JvIx1yJhZQ2KyNJSXn5BM7LMbUaMA
- Baraniuk JN. Chronic fatigue syndrome (myalgic encephalomyelitis): BMJ best practice guideline [Internet]. British Med J 2021 [cited 19 March 2021]. Available from: https://bestpractice.bmj.com/topics/en-us/277
- Campagnolo N, Johnston S, Collatz A, Staines D, Marshall-Gradisnik S. Dietary and nutrition interventions for the therapeutic treatment of chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review. J Hum Nutr Diet 2017; 30(3): 247–59. doi: 10.1111/jhn.12435
- Morris DH, Stare FJ. Unproven diet therapies in the treatment of the chronic fatigue syndrome. Arch Fam Med 1993; 2(2): 181–6. doi: 10.1001/archfami.2.2.181
- Craig C. Mitoprotective dietary approaches for myalgic encephalomyelitis/chronic fatigue syndrome: caloric restriction, fasting, and ketogenic diets. Med Hypotheses 2015; 85(5): 690–3. doi: 10.1016/j.mehy.2015.08.013
- Trabal J, Leyes P, Fernández-Solá J, Forga M, Fernández-Huerta J. Patterns of food avoidance in chronic fatigue syndrome: is there a case for dietary recommendations? Nutr Hosp 2012 [cited 27 April 2021]; 27(2): 659–62. Available from: https://pubmed.ncbi.nlm.nih.gov/22732998/
- Werbach MR. Nutritional strategies for treating chronic fatigue syndrome. Altern Med Rev 2000 [cited 25 March 2021]; 5(2): 93–108. Available from: https://www.researchgate.net/publication/12548254_Nutritional_strategies_for_treating_chronic_fatigue_syndrome
- Joustra ML, Minovic I, Janssens KAM, Bakker SJL, Rosmalen JGM. Vitamin and mineral status in chronic fatigue syndrome and fibromyalgia syndrome: a systematic review and meta-analysis. PLoS One 2017; 12(4): e0176631. doi: 10.1371/journal.pone.0176631
- Silva AR, Bernardo A, Costa J, Cardoso A, Santos P, de Mesquita MF, et al. Dietary interventions in fibromyalgia: a systematic review. Ann Med 2019; 51(suppl. 1): 2–14. doi: 10.1080/07853890.2018.1564360
- Tedeschi SK, Frits M, Cui J, Zhang ZZ, Mahmoud T, Iannaccone C, et al. Diet and rheumatoid arthritis symptoms: survey results from a rheumatoid arthritis registry. Arthritis Care Res (Hoboken) 2017; 69(12): 1920–5. doi: 10.1002/acr.23225
- Bagur MJ, Murcia MA, Jiménez-Monreal AM, Tur JA, Bibiloni MM, Alonso GL, et al. Influence of diet in multiple sclerosis: a systematic review. Adv Nutr 2017; 8(3): 463–72. doi: 10.3945/an.116.014191
- Sathyapalan T, Beckett S, Rigby AS, Mellor DD, Atkin SL. High cocoa polyphenol rich chocolate may reduce the burden of the symptoms in chronic fatigue syndrome. Nutr J 2010; 9: 55. doi: 10.1186/1475-2891-9-55
- South Australian Department of Human Services. ME/CFS guidelines: management guidelines for general. Adelaide: South Australian Department of Human Services, 2004; p. 10.
- Toward Optimized Practice (TOP) ME/CFS Working Group. Identification and symptom management of myalgic encephalomyelitis/chronic fatigue syndrome – clinical practice guideline. Edmonton: Toward Optimized Practice, 2016; p. 18.
- Logan AC, Wong C. Chronic fatigue syndrome: oxidative stress and dietary modifications. Altern Med Rev 2001 [cited 25 March 2021]; 6(5): 450–9. Available from: https://pubmed.ncbi.nlm.nih.gov/11703165/
- National Institute for Health and Care Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management [Internet]. London: Royal College of General Practitioners (United Kingdom); 2007 [cited 19 March 2021]. 21 p. Available from: https://www.nice.org.uk/guidance/cg53/resources/chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-pdf-975505810885
- Schmitz C. LimeSurvey: an open source survey tool [computer program]. Hamburg: LimeSurvey Project; 2012.
- Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med 1994; 121(12): 953–9. doi: 10.7326/0003-4819-121-12-199412150-00009
- Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, et al. Myalgic encephalomyelitis/chronic fatigue syndrome. J Chronic Fatigue Syndr 2003; 11(1): 7–115. doi: 10.1300/J092v11n01_02
- Cancer Council Victoria. Dietary questionnaires [Internet]. Victoria: Commonwealth of Australia; n.d. [cited 10 October 2020]. Available from: https://www.cancervic.org.au/research/epidemiology/nutritional_assessment_services
- IBM Corp. IBM SPSS Statistics, Version 26.0 [computer program]. Armonk, NY: IBM Corp; 2019.
- Weir CB, Jan A. BMI classification percentile and cut off points. In: StatPearls. Treasure Island, FL: StatPearls Publishing; 2020.
- Australian Bureau of Statistics. Australian Health Survey: nutrition first results – foods and nutrients, 2011–12 [Internet]. Canberra: Commonwealth of Australia; 2014 [cited 28 July 2020]. ABS Cat. No.: 4364.0.55.007. Available from: https://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/4364.0.55.007~2011-12~Main%20Features~Key%20Findings~1
- Stevenson CE. SF-36: interim norms for Australian data [Internet]. Canberra: Australian Institute of Health and Welfare; 1996 [cited 19 October 2020]. Available from: https://www.aihw.gov.au/getmedia/13a09319-2ec0-4030-aa54-ac43478573e1/SF-36%20Interim%20norms%20for%20Australian%20data.pdf.aspx?inline=true
- Food Standards Australia & New Zealand. Australian food composition database [Internet]. Commonwealth of Australia; 2019 [cited 28 August 2020]. Available from: https://www.foodstandards.gov.au/science/monitoringnutrients/afcd/Pages/default.aspx
- Food Standards Australia & New Zealand. AUSNUT 2007 [Internet]. Commonwealth of Australia; 2019 [cited 28 August 2020]. Available from: https://www.foodstandards.gov.au/science/monitoringnutrients/ausnut/Pages/ausnut2007.aspx
- Bjørklund G, Dadar M, Pen JJ, Chirumbolo S, Aaseth J. Chronic fatigue syndrome (CFS): suggestions for a nutritional treatment in the therapeutic approach. Biomed Pharmacother 2019; 109: 1000–7. doi: 10.1016/j.biopha.2018.10.076
- Castro-Marrero J, Faro M, Aliste L, Sáez-Francàs N, Calvo N, Martínez-Martínez A, et al. Comorbidity in chronic fatigue syndrome/myalgic encephalomyelitis: a nationwide population-based cohort study. Psychosomatics 2017; 58(5): 533–43. doi: 10.1016/j.psym.2017.04.010
- Castro-Marrero J, Faro M, Zaragozá MC, Aliste L, Fernández de Sevilla TF, Alegre J. Unemployment and work disability in individuals with chronic fatigue syndrome/myalgic encephalomyelitis: a community-based cross-sectional study from Spain. BMC Public Health 2019; 19(1): 840. doi: 10.1186/s12889-019-7225-z
- Słomko J, Newton JL, Kujawski S, Tafil-Klawe M, Klawe J, Staines D, et al. Prevalence and characteristics of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study. BMJ Open 2019; 9(3): e023955. doi: 10.1136/bmjopen-2018-023955
- Faro M, Sàez-Francás N, Castro-Marrero J, Aliste L, Fernández de Sevilla T, Alegre J. Gender differences in chronic fatigue syndrome. Reumatol Clin 2016; 12(2): 72–7. doi: 10.1016/j.reuma.2015.05.007
- Jones JF, Nisenbaum R, Reeves WC. Medication use by persons with chronic fatigue syndrome: results of a randomized telephone survey in Wichita, Kansas. Health Qual Life Out 2003; 1(1): 74. doi: 10.1186/1477-7525-1-74
- Jason LA, Brown A, Clyne E, Bartgis L, Evans M, Brown M. Contrasting case definitions for chronic fatigue syndrome, myalgic encephalomyelitis/chronic fatigue syndrome and myalgic encephalomyelitis. Eval Health Prof 2011; 35(3): 280–304. doi: 10.1177/0163278711424281
- Eaton-Fitch N, du Preez S, Cabanas H, Staines D, Marshall-Gradisnik S. A systematic review of natural killer cells profile and cytotoxic function in myalgic encephalomyelitis/chronic fatigue syndrome. Syst Rev 2019; 8(1): 279. doi: 10.1186/s13643-019-1202-6
- Boneva RS, Lin J-MS, Maloney EM, Jones JF, Reeves WC. Use of medications by people with chronic fatigue syndrome and healthy persons: a population-based study of fatiguing illness in Georgia. Health Qual Life Out 2009; 7(1): 67. doi: 10.1186/1477-7525-7-67
- Dykman KD, Tone C, Ford C, Dykman RA. The effects of nutritional supplements on the symptoms of fibromyalgia and chronic fatigue syndrome. Integr Physiol Behav Sci 1998; 33(1): 61–71. doi: 10.1007/BF02688676
- Maric D, Brkic S, Tomic S, Novakov Mikic A, Cebovic T, Turkulov V. Multivitamin mineral supplementation in patients with chronic fatigue syndrome. Med Sci Monit 2014; 20: 47–53. doi: 10.12659/MSM.889333
- Brouwers FM, Van Der Werf S, Bleijenberg G, Van Der Zee L, Van Der Meer JW. The effect of a polynutrient supplement on fatigue and physical activity of patients with chronic fatigue syndrome: a double-blind randomized controlled trial. QJM 2002; 95(10): 677–83. doi: 10.1093/qjmed/95.10.677
- Plevin D, Galletly C. The neuropsychiatric effects of vitamin C deficiency: a systematic review. BMC Psychiatry 2020; 20(1): 315. doi: 10.1186/s12888-020-02730-w
- Jammes Y, Steinberg JG, Delliaux S. Chronic fatigue syndrome: acute infection and history of physical activity affect resting levels and response to exercise of plasma oxidant/antioxidant status and heat shock proteins. J Intern Med 2012; 272(1): 74–84. doi: 10.1111/j.1365-2796.2011.02488.x
- Witham MD, Adams F, McSwiggan S, Kennedy G, Kabir G, Belch JJ, et al. Effect of intermittent vitamin D3 on vascular function and symptoms in chronic fatigue syndrome: a randomised controlled trial. Nutr Metab Cardiovasc Dis 2015; 25(3): 287–94. doi: 10.1016/j.numecd.2014.10.007
- Porter NS, Jason LA, Boulton A, Bothne N, Coleman B. Alternative medical interventions used in the treatment and management of myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia. J Altern Complem Med 2010; 16(3): 235–49. doi: 10.1089/acm.2008.0376
- Maes M, Mihaylova I, Kubera M, Uytterhoeven M, Vrydags N, Bosmans E. Coenzyme Q10 deficiency in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is related to fatigue, autonomic and neurocognitive symptoms and is another risk factor explaining the early mortality in ME/CFS due to cardiovascular disorder. Neuro Endocrinol Lett 2009 [cited 25 March 2021]; 30(4): 470–6. Available from: https://pubmed.ncbi.nlm.nih.gov/20010505/
- Castro-Marrero J, Sáez-Francàs N, Segundo MJ, Calvo N, Faro M, Aliste L, et al. Effect of coenzyme Q10 plus nicotinamide adenine dinucleotide supplementation on maximum heart rate after exercise testing in chronic fatigue syndrome – a randomized, controlled, double-blind trial. Clin Nutr 2016; 35(4): 826–34. doi: 10.1016/j.clnu.2015.07.010
- Fukuda S, Nojima J, Kajimoto O, Yamaguti K, Nakatomi Y, Kuratsune H, et al. Ubiquinol-10 supplementation improves autonomic nervous function and cognitive function in chronic fatigue syndrome. BioFactors 2016; 42(4): 431–40. doi: 10.1002/biof.1293
- Maksoud R, Balinas C, Holden S, Cabanas H, Staines D, Marshall-Gradisnik S. A systematic review of nutraceutical interventions for mitochondrial dysfunctions in myalgic encephalomyelitis/chronic fatigue syndrome. J Transl Med 2021; 19(1): 81. doi: 10.1186/s12967-021-02742-4
- Öckerman, P. Antioxidant treatment of chronic fatigue syndrome. Clin Pract Alternative Med 2000 [cited 27 April 2021]; 1(2): 88–91. Available from: http://www.scicompdf.se/pollen/ockerman_clin.pdf
- Kreijkamp-Kaspers S, Brenu EW, Marshall S, Staines D, Van Driel ML. Treating chronic fatigue syndrome – a study into the scientific evidence for pharmacological treatments. Aust Fam Physician 2011 [cited 27 April 2021]; 40(11): 907–12. Available from: https://search.informit.org/doi/abs/10.3316/informit.535208761844423
- Puri BK. Long-chain polyunsaturated fatty acids and the pathophysiology of myalgic encephalomyelitis (chronic fatigue syndrome). J Clin Pathol 2007; 60(2): 122–4. doi: 10.1136/jcp.2006.042424
- Goedendorp MM, Knoop H, Schippers GM, Bleijenberg G. The lifestyle of patients with chronic fatigue syndrome and the effect on fatigue and functional impairments. J Hum Nutr Diet 2009; 22(3): 226–31. doi: 10.1111/j.1365-277X.2008.00933.x
- Weigel B, Eaton-Fitch N, Passmore R, Cabanas H, Staines D, Marshall-Gradisnik S. Gastrointestinal symptoms, dietary habits, and the effect on health-related quality of life among Australian myalgic encephalomyelitis/chronic fatigue syndrome patients: a cross-sectional study. Ann Epidemiol Public Health 2020 [cited 27 April 2021]; 3(1): 1045. Available from: https://meddocsonline.org/annals-of-epidemiology-and-public-health/gastrointestinal-symptoms-dietary-habits-and-the-effect-on-healthrelated-quality-of-life-among-australian-myalgicencephalomyelitis-chronic-fatigue-syndrome-patients-a-crosssectional-study.pdf
- Australian Institute of Health and Welfare. Folic acid & iodine fortification [Internet]. Canberra: Commonwealth of Australia; 2016 [cited 31 March 2021]. Cat. No.: WEB 134. Available from: https://www.aihw.gov.au/reports/food-nutrition/folic-acid-iodine-fortification/contents/summary
- Loblay RH, Swain AR. The role of food intolerance in chronic fatigue syndrome. The clinical and scientific basis of ME/CFS. New York, NY: The Nightingale Research Foundation, 1992; p. 521–38.
- Rowe PC, Underhill RA, Friedman KJ, Gurwitt A, Medow MS, Schwartz MS, et al. Myalgic encephalomyelitis/chronic fatigue syndrome diagnosis and management in young people: a primer. Front Pediatr 2017; 5(121). doi: 10.3389/fped.2017.00121
- Australian Bureau of Statistics. National health survey: first results, 2017–18 [Internet]. Canberra: Commonwealth of Australia; 2018 [27 April 2021]. ABS Cat. No.: 4364.0.55.001. Available from: https://www.abs.gov.au/statistics/health/health-conditions-and-risks/national-health-survey-first-results/latest-release
- Kwak SG, Kim JH. Central limit theorem: the cornerstone of modern statistics. Korean J Anesthesiol 2017; 70(2): 144–56. doi: 10.4097/kjae.2017.70.2.144
- Ireland P, Jolley D, Giles G, O’Dea K, Powles J, Rutishauser I, et al. Development of the Melbourne FFQ: a food frequency questionnaire for use in an Australian prospective study involving an ethnically diverse cohort. Asia Pacific J Clin Nutr 1994 [cited 26 March 2021]; 3: 19–31. Available from: https://pubmed.ncbi.nlm.nih.gov/24351203/
- Bassett JK, English DR, Fahey MT, Forbes AB, Gurrin LC, Simpson JA, et al. Validity and calibration of the FFQ used in the Melbourne collaborative cohort study. Public Health Nutr 2016; 19(13): 2357–68. doi: 10.1017/S1368980016000690
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