Of the ICC-ME authors who have subsequently published in the field (based on PubMed), all have subsequently used ME/CFS and/or CFS

T

Tom Kindlon

Senior Member (Voting Rights)
Since the publication of the International Consensus Criteria:
Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, Staines D, Powles AC, Speight N, Vallings R, Bateman L, Baumgarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisnik S, Mena I, Mikovits JA, Miwa K, Murovska M, Pall ML, Stevens S. Myalgic encephalomyelitis: International Consensus Criteria. J Intern Med. 2011 Oct;270(4):327-38. doi: 10.1111/j.1365-2796.2011.02428.x. Epub 2011 Aug 22.
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I have seen a number of people criticise the use of terms such as “ME/CFS” and "CFS" by individuals, researchers and organisations, including pieces aimed at professionals.

I have wondered whether all of these people knew how the authors themselves often use ME/CFS or even CFS. So I thought I would collate some published papers to show that even the authors themselves have often used “ME/CFS” and sometimes CFS alone since the 2011 publication.

Unfortunately, a number of the authors have passed away since its publication. And some others don’t seem to have published in the field since then. But of those that have published a paper in the field, all seem to have co-authored at least one paper that used ME/CFS or CFS as can be seen by the list below.

Comment: I didn't want to spend too much time on this so apologies for the double line breaks. I copied the paper details from PubMed into https://www.textfixer.com/tools/remove-line-breaks.php to even out the spacing but it added another line.
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These are sorted by the order they appear in the author list of the 2011 paper:



Carruthers BM:

I think may not have published any more publications in the field in the peer-review literature since



van de Sande MI:

I think may not have published any more publications in the field in the peer-review literature since



De Meirleir KL:

Schlauch KA, Khaiboullina SF, De Meirleir KL, Rawat S, Petereit J, Rizvanov AA, Blatt N, Mijatovic T, Kulick D, Palotás A, Lombardi VC. Genome-wide association analysis identifies genetic variations in subjects with myalgic encephalomyelitis/chronic fatigue syndrome. Transl Psychiatry. 2016 Feb 9;6:e730. doi: 10.1038/tp.2015.208.



Frémont M, Coomans D, Massart S, De Meirleir K. High-throughput 16S rRNA gene sequencing reveals alterations of intestinal microbiota in myalgic encephalomyelitis/chronic fatigue syndrome patients. Anaerobe. 2013 Aug;22:50-6. doi: 10.1016/j.anaerobe.2013.06.002. Epub 2013 Jun 19.



Meeus M, Nijs J, Van Mol E, Truijen S, De Meirleir K. Role of psychological aspects in both chronic pain and in daily functioning in chronic fatigue syndrome: a prospective longitudinal study. Clin Rheumatol. 2012 Jun;31(6):921-9. doi: 10.1007/s10067-012-1946-z. Epub 2012 Feb 16.



Klimas NG

Perez M, Jaundoo R, Hilton K, Del Alamo A, Gemayel K, Klimas NG, Craddock TJA, Nathanson L. Genetic Predisposition for Immune System, Hormone, and Metabolic Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Pilot Study. Front Pediatr. 2019 May 24;7:206. doi: 10.3389/fped.2019.00206. eCollection 2019.



Morris MC, Cooney KE, Sedghamiz H, Abreu M, Collado F, Balbin EG, Craddock TJA, Klimas NG, Broderick G, Fletcher MA. Leveraging Prior Knowledge of Endocrine Immune Regulation in the Therapeutically Relevant Phenotyping of Women With Chronic Fatigue Syndrome. Clin Ther. 2019 Apr;41(4):656-674.e4. doi: 10.1016/j.clinthera.2019.03.002. Epub 2019 Mar 28.



Richman S, Morris MC, Broderick G, Craddock TJA, Klimas NG, Fletcher MA. Pharmaceutical Interventions in Chronic Fatigue Syndrome: A Literature-based Commentary. Clin Ther. 2019 May;41(5):798-805. doi: 10.1016/j.clinthera.2019.02.011. Epub 2019 Mar 11. PMID:30871727



Jeffrey MG, Nathanson L, Aenlle K, Barnes ZM, Baig M, Broderick G, Klimas NG, Fletcher MA, Craddock TJA. Treatment Avenues in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Split-gender Pharmacogenomic Study of Gene-expression Modules. Clin Ther. 2019 May;41(5):815-835.e6. doi: 10.1016/j.clinthera.2019.01.011. Epub 2019 Mar 6.



Trivedi MS, Oltra E, Sarria L, Rose N, Beljanski V, Fletcher MA, Klimas NG, Nathanson L. Identification of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-associated DNA methylation patterns. PLoS One. 2018 Jul 23;13(7):e0201066. doi: 10.1371/journal.pone.0201066. eCollection 2018.



Nagy-Szakal D, Barupal DK, Lee B, Che X, Williams BL, Kahn EJR, Ukaigwe JE, Bateman L, Klimas NG, Komaroff AL, Levine S, Montoya JG, Peterson DL, Levin B, Hornig M, Fiehn O, Lipkin WI. Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics. Sci Rep. 2018 Jul 3;8(1):10056. doi: 10.1038/s41598-018-28477-9.



Nagy-Szakal D, Williams BL, Mishra N, Che X, Lee B, Bateman L, Klimas NG, Komaroff AL, Levine S, Montoya JG, Peterson DL, Ramanan D, Jain K, Eddy ML, Hornig M, Lipkin WI. Fecal metagenomic profiles in subgroups of patients with myalgic encephalomyelitis/chronic fatigue syndrome. Microbiome. 2017 Apr 26;5(1):44. doi: 10.1186/s40168-017-0261-y.



Unger ER, Lin JS, Tian H, Natelson BH, Lange G, Vu D, Blate M, Klimas NG, Balbin EG, Bateman L, Allen A, Lapp CW, Springs W, Kogelnik AM, Phan CC, Danver J, Podell RN, Fitzpatrick T, Peterson DL, Gottschalk CG, Rajeevan MS; MCAM Study Group. Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM): Design and Implementation of a Prospective/Retrospective Rolling Cohort Study. Am J Epidemiol. 2017 Apr 15;185(8):617-626. doi: 10.1093/aje/kwx029.



Halpin P, Williams MV, Klimas NG, Fletcher MA, Barnes Z, Ariza ME. Myalgic encephalomyelitis/chronic fatigue syndrome and gulf war illness patients exhibit increased humoral responses to the herpesviruses-encoded dUTPase: Implications in disease pathophysiology. J Med Virol. 2017 Sep;89(9):1636-1645. doi: 10.1002/jmv.24810. Epub 2017 Apr 26.



Russell L, Broderick G, Taylor R, Fernandes H, Harvey J, Barnes Z, Smylie A, Collado F, Balbin EG, Katz BZ, Klimas NG, Fletcher MA. Illness progression in chronic fatigue syndrome: a shifting immune baseline. BMC Immunol. 2016 Mar 10;17:3. doi: 10.1186/s12865-016-0142-3.



Hall DL, Antoni MH, Lattie EG, Jutagir DR, Czaja SJ, Perdomo D, Lechner SC, Stagl JM, Bouchard LC, Gudenkauf LM, Traeger L, Fletcher M, Klimas NG. Perceived Fatigue Interference and Depressed Mood: Comparison of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Patients with Fatigued Breast Cancer Survivors. Fatigue. 2015;3(3):142-155.



Hornig M, Montoya JG, Klimas NG, Levine S, Felsenstein D, Bateman L, Peterson DL, Gottschalk CG, Schultz AF, Che X, Eddy ML, Komaroff AL, Lipkin WI. Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Sci Adv. 2015 Feb;1(1). pii: e1400121.



Irlbeck DM, Vernon SD, McCleary KK, Bateman L, Klimas NG, Lapp CW, Peterson DL, Brown JR, Remlinger KS, Wilfret DA, Gerondelis P. No association found between the detection of either xenotropic murine leukemia virus-related virus or polytropic murine leukemia virus and chronic fatigue syndrome in a blinded, multi-site, prospective study by the establishment and use of the SolveCFS BioBank. BMC Res Notes. 2014 Aug 4;7:461. doi: 10.1186/1756-0500-7-461.



Hall DL, Lattie EG, Antoni MH, Fletcher MA, Czaja S, Perdomo D, Klimas NG.Stress management skills, cortisol awakening response, and post-exertional malaise in Chronic Fatigue Syndrome. Psychoneuroendocrinology. 2014 Nov;49:26-31. doi: 10.1016/j.psyneuen.2014.06.021. Epub 2014 Jul 6.



Craddock TJ, Fritsch P, Rice MA Jr, del Rosario RM, Miller DB, Fletcher MA, Klimas NG, Broderick G. A role for homeostatic drive in the perpetuation of complex chronic illness: Gulf War Illness and chronic fatigue syndrome. PLoS One. 2014 Jan 8;9(1):e84839. doi: 10.1371/journal.pone.0084839. eCollection 2014. Erratum in: PLoS One. 2014;9(4):e94161. PLoS One. 2014;9(6):e100355.



Smylie AL, Broderick G, Fernandes H, Razdan S, Barnes Z, Collado F, Sol C, Fletcher MA, Klimas N. A comparison of sex-specific immune signatures in Gulf War illness and chronic fatigue syndrome. BMC Immunol. 2013 Jun 25;14:29. doi: 10.1186/1471-2172-14-29.



Broderick G

Morris MC, Cooney KE, Sedghamiz H, Abreu M, Collado F, Balbin EG, Craddock TJA, Klimas NG, Broderick G, Fletcher MA. Leveraging Prior Knowledge of Endocrine Immune Regulation in the Therapeutically Relevant Phenotyping of Women With Chronic Fatigue Syndrome. Clin Ther. 2019 Apr;41(4):656-674.e4. doi: 10.1016/j.clinthera.2019.03.002. Epub 2019 Mar 28.



Richman S, Morris MC, Broderick G, Craddock TJA, Klimas NG, Fletcher MA. Pharmaceutical Interventions in Chronic Fatigue Syndrome: A Literature-based Commentary. Clin Ther. 2019 May;41(5):798-805. doi: 10.1016/j.clinthera.2019.02.011. Epub 2019 Mar 11. PMID:30871727



Jeffrey MG, Nathanson L, Aenlle K, Barnes ZM, Baig M, Broderick G, Klimas NG, Fletcher MA, Craddock TJA. Treatment Avenues in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Split-gender Pharmacogenomic Study of Gene-expression Modules. Clin Ther. 2019 May;41(5):815-835.e6. doi: 10.1016/j.clinthera.2019.01.011. Epub 2019 Mar 6.



Cook DB, Light AR, Light KC, Broderick G, Shields MR, Dougherty RJ, Meyer JD, VanRiper S, Stegner AJ, Ellingson LD, Vernon SD. Neural consequences of post-exertion malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Brain Behav Immun. 2017 May;62:87-99. doi: 10.1016/j.bbi.2017.02.009. Epub 2017 Feb 17.



Russell L, Broderick G, Taylor R, Fernandes H, Harvey J, Barnes Z, Smylie A, Collado F, Balbin EG, Katz BZ, Klimas NG, Fletcher MA. Illness progression in chronic fatigue syndrome: a shifting immune baseline. BMC Immunol. 2016 Mar 10;17:3. doi: 10.1186/s12865-016-0142-3.



Craddock TJ, Fritsch P, Rice MA Jr, del Rosario RM, Miller DB, Fletcher MA, Klimas NG, Broderick G. A role for homeostatic drive in the perpetuation of complex chronic illness: Gulf War Illness and chronic fatigue syndrome. PLoS One. 2014 Jan 8;9(1):e84839. doi: 10.1371/journal.pone.0084839. eCollection 2014. Erratum in: PLoS One. 2014;9(4):e94161. PLoS One. 2014;9(6):e100355.



Smylie AL, Broderick G, Fernandes H, Razdan S, Barnes Z, Collado F, Sol C, Fletcher MA, Klimas N. A comparison of sex-specific immune signatures in Gulf War illness and chronic fatigue syndrome. BMC Immunol. 2013 Jun 25;14:29. doi: 10.1186/1471-2172-14-29.



Mitchell T

I think may not have published any more publications in the field in the peer-review literature since
 
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Staines D



Eaton-Fitch N, Johnston SC, Zalewski P, Staines D, Marshall-Gradisnik S. Qual Life Res. 2020 Jan 22. doi: 10.1007/s11136-019-02411-6. [Epub ahead of print] Health-related quality of life in patients with myalgic encephalomyelitis/chronic fatigue syndrome: an Australian cross-sectional study.



Balinas C, Cabanas H, Staines D, Marshall-Gradisnik S. Transient receptor potential melastatin 2 channels are overexpressed in myalgic encephalomyelitis/chronic fatigue syndrome patients. J Transl Med. 2019 Dec 3;17(1):401. doi: 10.1186/s12967-019-02155-4.



Cabanas H, Muraki K, Staines D, Marshall-Gradisnik S. Naltrexone Restores Impaired Transient Receptor Potential Melastatin 3 Ion Channel Function in Natural Killer Cells From Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. Front Immunol. 2019 Oct 31;10:2545. doi: 10.3389/fimmu.2019.02545. eCollection 2019.



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 Nov 14;8(1):279. doi: 10.1186/s13643-019-1202-6. Review.



Barnden LR, Shan ZY, Staines DR, Marshall-Gradisnik S, Finegan K, Ireland T, Bhuta S. Intra brainstem connectivity is impaired in chronic fatigue syndrome. Neuroimage Clin. 2019;24:102045. doi: 10.1016/j.nicl.2019.102045. Epub 2019 Oct 19. Select item 314455227.



Corbitt M, Eaton-Fitch N, Staines D, Cabanas H, Marshall-Gradisnik S. A systematic review of cytokines in chronic fatigue syndrome/myalgic encephalomyelitis/systemic exertion intolerance disease (CFS/ME/SEID). BMC Neurol. 2019 Aug 24;19(1):207. doi: 10.1186/s12883-019-1433-0.



Balinas C, Cabanas H, Staines D, Marshall-Gradisnik S. Identification and characterisation of transient receptor potential melastatin 2 and CD38 channels on natural killer cells using the novel application of flow cytometry. BMC Immunol. 2019 May 10;20(1):14. doi: 10.1186/s12865-019-0293-0.



Cabanas H, Muraki K, Balinas C, Eaton-Fitch N, Staines D, Marshall-Gradisnik S. Validation of impaired Transient Receptor Potential Melastatin 3 ion channel activity in natural killer cells from Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis patients. Mol Med. 2019 Apr 23;25(1):14. doi: 10.1186/s10020-019-0083-4.



Slomko J, Newton JL, Kujawski S, Tafil-Klawe M, Klawe J, Staines D, Marshall-Gradisnik S, Zalewski P. Prevalence and characteristics of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study. BMJ Open. 2019 Mar 7;9(3):e023955. doi: 10.1136/bmjopen-2018-023955.



Du Preez S, Corbitt M, Cabanas H, Eaton N, Staines D, Marshall-Gradisnik S. A systematic review of enteric dysbiosis in chronic fatigue syndrome/myalgic encephalomyelitis. Syst Rev. 2018 Dec 20;7(1):241. doi: 10.1186/s13643-018-0909-0.



Barnden LR, Shan ZY, Staines DR, Marshall-Gradisnik S, Finegan K, Ireland T, Bhuta S. Hyperintense sensorimotor T1 spin echo MRI is associated with brainstem abnormality in chronic fatigue syndrome. Neuroimage Clin. 2018;20:102-109. doi: 10.1016/j.nicl.2018.07.011. Epub 2018 Jul 11.



Cabanas H, Muraki K, Eaton N, Balinas C, Staines D, Marshall-Gradisnik S. Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients. Mol Med. 2018 Aug 14;24(1):44. doi: 10.1186/s10020-018-0046-1.



Shan ZY, Finegan K, Bhuta S, Ireland T, Staines DR, Marshall-Gradisnik SM, Barnden LR. Brain function characteristics of chronic fatigue syndrome: A task fMRI study. Neuroimage Clin. 2018 Apr 25;19:279-286. doi: 10.1016/j.nicl.2018.04.025. eCollection 2018.



Nguyen T, Staines D, Johnston S, Marshall-Gradisnik S. Reduced glycolytic reserve in isolated natural killer cells from Myalgic encephalomyelitis/ chronic fatigue syndrome patients: A preliminary investigation. Asian Pac J Allergy Immunol. 2019 Jun;37(2):102-108. doi: 10.12932/AP-011117-0188.



Eaton N, Cabanas H, Balinas C, Klein A, Staines D, Marshall-Gradisnik S. Rituximab impedes natural killer cell function in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients: A pilot in vitro investigation. BMC Pharmacol Toxicol. 2018 Mar 27;19(1):12. doi: 10.1186/s40360-018-0203-8.



Corbitt M, Campagnolo N, Staines D, Marshall-Gradisnik S. A Systematic Review of Probiotic Interventions for Gastrointestinal Symptoms and Irritable Bowel Syndrome in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Probiotics Antimicrob Proteins. 2018 Sep;10(3):466-477. doi: 10.1007/s12602-018-9397-8.



Balinas C, Nguyen T, Johnston S, Smith P, Staines D, Marshall-Gradisnik S. Investigation of mast cell toll-like receptor 3 in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Systemic Mastocytosis using the novel application of autoMACS magnetic separation and flow cytometry. Asian Pac J Allergy Immunol. 2018 Dec;36(4):257-264. doi: 10.12932/AP-200517-0086.



Shan ZY, Finegan K, Bhuta S, Ireland T, Staines DR, Marshall-Gradisnik SM, Barnden LR.Decreased Connectivity and Increased Blood Oxygenation Level Dependent Complexity in the Default Mode Network in Individuals with Chronic Fatigue Syndrome. Brain Connect. 2018 Feb;8(1):33-39. doi: 10.1089/brain.2017.0549. Epub 2018 Jan 3.



Shan ZY, Kwiatek R, Burnet R, Del Fante P, Staines DR, Marshall-Gradisnik SM, Barnden LR. Medial prefrontal cortex deficits correlate with unrefreshing sleep in patients with chronic fatigue syndrome. NMR Biomed. 2017 Oct;30(10). doi: 10.1002/nbm.3757. Epub 2017 Jun 29.



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 Jun;30(3):247-259. doi: 10.1111/jhn.12435. Epub 2017 Jan 22. Review.



Johnston S, Staines D, Klein A, Marshall-Gradisnik S. A targeted genome association study examining transient receptor potential ion channels, acetylcholine receptors, and adrenergic receptors in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. BMC Med Genet. 2016 Nov 11;17(1):79.



Marshall-Gradisnik S, Johnston S, Chacko A, Nguyen T, Smith P, Staines D. Single nucleotide polymorphisms and genotypes of transient receptor potential ion channel and acetylcholine receptor genes from isolated B lymphocytes in myalgic encephalomyelitis/chronic fatigue syndrome patients. J Int Med Res. 2016 Dec;44(6):1381-1394. doi: 10.1177/0300060516671622. Epub 2016 Nov 11.



Nguyen T, Johnston S, Clarke L, Smith P, Staines D, Marshall-Gradisnik S. Impaired calcium mobilization in natural killer cells from chronic fatigue syndrome/myalgic encephalomyelitis patients is associated with transient receptor potential melastatin 3 ion channels. Clin Exp Immunol. 2017 Feb;187(2):284-293. doi: 10.1111/cei.12882. Epub 2016 Nov 23.



Chacko A, Staines DR, Johnston SC, Marshall-Gradisnik SM. Dysregulation of Protein Kinase Gene Expression in NK Cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Patients. Gene Regul Syst Bio. 2016 Aug 28;10:85-93. doi: 10.4137/GRSB.S40036. eCollection 2016.



Nguyen T, Johnston S, Chacko A, Gibson D, Cepon J, Smith P, Staines D, Marshall-Gradisnik S. Novel characterisation of mast cell phenotypes from peripheral blood mononuclear cells in chronic fatigue syndrome/myalgic encephalomyelitis patients. Asian Pac J Allergy Immunol. 2017 Jun;35(2):75-81. doi: 10.12932/AP0771.



Huth TK, Brenu EW, Staines DR, Marshall-Gradisnik SM. Killer Cell Immunoglobulin-like Receptor Genotype and Haplotype Investigation of Natural Killer Cells from an Australian Population of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Patients. Gene Regul Syst Bio. 2016 Jun 19;10:43-9. doi: 10.4137/GRSB.S39861. eCollection 2016.



Johnston SC, Staines DR, Marshall-Gradisnik SM. Epidemiological characteristics of chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients. Clin Epidemiol. 2016 May 17;8:97-107. doi: 10.2147/CLEP.S96797. eCollection 2016.



Nguyen T, Staines D, Nilius B, Smith P, Marshall-Gradisnik S. Novel identification and characterisation of Transient receptor potential melastatin 3 ion channels on Natural Killer cells and B lymphocytes: effects on cell signalling in Chronic fatigue syndrome/Myalgic encephalomyelitis patients. Biol Res. 2016 May 31;49(1):27. doi: 10.1186/s40659-016-0087-2.



Collatz A, Johnston SC, Staines DR, Marshall-Gradisnik SM. A Systematic Review of Drug Therapies for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Clin Ther. 2016 Jun;38(6):1263-1271.e9. doi: 10.1016/j.clinthera.2016.04.038. Epub 2016 May 24. Review.



Shan ZY, Kwiatek R, Burnet R, Del Fante P, Staines DR, Marshall-Gradisnik SM, Barnden LR. Progressive brain changes in patients with chronic fatigue syndrome: A longitudinal MRI study. J Magn Reson Imaging. 2016 Nov;44(5):1301-1311. doi: 10.1002/jmri.25283. Epub 2016 Apr 28.



Marshall-Gradisnik S, Huth T, Chacko A, Johnston S, Smith P, Staines D. Natural killer cells and single nucleotide polymorphisms of specific ion channels and receptor genes in myalgic encephalomyelitis/chronic fatigue syndrome. Appl Clin Genet. 2016 Mar 31;9:39-47. doi: 10.2147/TACG.S99405. eCollection 2016.



Huth TK, Staines D, Marshall-Gradisnik S. ERK1/2, MEK1/2 and p38 downstream signalling molecules impaired in CD56 dim CD16+ and CD56 bright CD16 dim/- natural killer cells in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients. J Transl Med. 2016 Apr 21;14:97. doi: 10.1186/s12967-016-0859-z.



Ramos S, Brenu E, Broadley S, Kwiatek R, Ng J, Nguyen T, Freeman S, Staines D, Marshall-Gradisnik S. Regulatory T, natural killer T and ?d T cells in multiple sclerosis and chronic fatigue syndrome/myalgic encephalomyelitis: a comparison. Asian Pac J Allergy Immunol. 2016 Dec;34(4):300-305. doi: 10.12932/AP0733.



Brenu EW, Broadley S, Nguyen T, Johnston S, Ramos S, Staines D, Marshall-Gradisnik S. A Preliminary Comparative Assessment of the Role of CD8+ T Cells in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Multiple Sclerosis. J Immunol Res. 2016;2016:9064529. doi: 10.1155/2016/9064529. Epub 2016 Jan 4.



Hardcastle SL, Brenu EW, Johnston S, Nguyen T, Huth T, Ramos S, Staines D, Marshall-Gradisnik S. Serum Immune Proteins in Moderate and Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Patients. Int J Med Sci. 2015 Sep 5;12(10):764-72. doi: 10.7150/ijms.12399. eCollection 2015.



Huth TK, Brenu EW, Ramos S, Nguyen T, Broadley S, Staines D, Marshall-Gradisnik S. Pilot Study of Natural Killer Cells in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Multiple Sclerosis. Scand J Immunol. 2016 Jan;83(1):44-51. doi: 10.1111/sji.12388.



Hardcastle SL, Brenu EW, Johnston S, Nguyen T, Huth T, Ramos S, Staines D, Marshall-Gradisnik S. Longitudinal analysis of immune abnormalities in varying severities of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients. J Transl Med. 2015 Sep 14;13:299. doi: 10.1186/s12967-015-0653-3.



Hardcastle SL, Brenu EW, Johnston S, Nguyen T, Huth T, Wong N, Ramos S, Staines D, Marshall-Gradisnik S. Characterisation of cell functions and receptors in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). BMC Immunol. 2015 Jun 2;16:35. doi: 10.1186/s12865-015-0101-4.



Peterson D, Brenu EW, Gottschalk G, Ramos S, Nguyen T, Staines D, Marshall-Gradisnik S. Cytokines in the cerebrospinal fluids of patients with chronic fatigue syndrome/myalgic encephalomyelitis. Mediators Inflamm. 2015;2015:929720. doi: 10.1155/2015/929720. Epub 2015 Mar 5.



Hardcastle SL, Brenu EW, Johnston S, Staines D, Marshall-Gradisnik S. Severity Scales for Use in Primary Health Care to Assess Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Health Care Women Int. 2016 Jun;37(6):671-86. doi: 10.1080/07399332.2014.962139. Epub 2014 Dec 20. Review.



Brenu EW, Ashton KJ, Batovska J, Staines DR, Marshall-Gradisnik SM. High-throughput sequencing of plasma microRNA in chronic fatigue syndrome/myalgic encephalomyelitis. PLoS One. 2014 Sep 19;9(9):e102783. doi: 10.1371/journal.pone.0102783. eCollection 2014.



Johnston SC, Brenu EW, Hardcastle SL, Huth TK, Staines DR, Marshall-Gradisnik SM. A comparison of health status in patients meeting alternative definitions for chronic fatigue syndrome/myalgic encephalomyelitis. Health Qual Life Outcomes. 2014 Apr 30;12:64. doi: 10.1186/1477-7525-12-64.



Brenu EW, Huth TK, Hardcastle SL, Fuller K, Kaur M, Johnston S, Ramos SB, Staines DR, Marshall-Gradisnik SM. Role of adaptive and innate immune cells in chronic fatigue syndrome/myalgic encephalomyelitis. Int Immunol. 2014 Apr;26(4):233-42. doi: 10.1093/intimm/dxt068. Epub 2013 Dec 16.



Brenu EW, Hardcastle SL, Atkinson GM, van Driel ML, Kreijkamp-Kaspers S, Ashton KJ, Staines DR, Marshall-Gradisnik SM. Natural killer cells in patients with severe chronic fatigue syndrome. Auto Immun Highlights. 2013 Apr 16;4(3):69-80. doi: 10.1007/s13317-013-0051-x. eCollection 2013 Dec.



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 Jun;23(6):371-6. doi: 10.1016/j.annepidem.2013.04.003. Review.



Johnston S, Brenu EW, Staines D, Marshall-Gradisnik S. The prevalence of chronic fatigue syndrome/ myalgic encephalomyelitis: a meta-analysis. Clin Epidemiol. 2013;5:105-10. doi: 10.2147/CLEP.S39876. Epub 2013 Mar 26. Brenu EW, Ashton KJ, van Driel M, Staines DR, Peterson D, Atkinson GM, Marshall-Gradisnik SM. Cytotoxic lymphocyte microRNAs as prospective biomarkers for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. J Affect Disord. 2012 Dec 10;141(2-3):261-9. doi: 10.1016/j.jad.2012.03.037. Epub 2012 May 8.



Brenu EW, van Driel ML, Staines DR, Ashton KJ, Hardcastle SL, Keane J, Tajouri L, Peterson D, Ramos SB, Marshall-Gradisnik SM. Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis. J Transl Med. 2012 May 9;10:88. doi: 10.1186/1479-5876-10-88.



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 Nov;40(11):907-12.



Powles AC

I think may not have published any more publications in the field in the peer-review literature since



Speight N

Rowe PC, Underhill RA, Friedman KJ, Gurwitt A, Medow MS, Schwartz MS, Speight N, Stewart JM, Vallings R, Rowe KS. Front Pediatr. 2017 Jun 19;5:121. doi: 10.3389/fped.2017.00121. eCollection 2017. Review. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer.
 
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Vallings R

Sweetman E, Noble A, Edgar C, Mackay A, Helliwell A, Vallings R, Ryan M, Tate W. Current Research Provides Insight into the Biological Basis and Diagnostic Potential for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Diagnostics (Basel). 2019 Jul 10;9(3). pii: E73. doi: 10.3390/diagnostics9030073.



Sweetman E, Ryan M, Edgar C, MacKay A, Vallings R, Tate W. Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome. Int J Immunopathol Pharmacol. 2019 Jan-Dec;33:2058738418820402. doi: 10.1177/2058738418820402.



Rowe PC, Underhill RA, Friedman KJ, Gurwitt A, Medow MS, Schwartz MS, Speight N, Stewart JM, Vallings R, Rowe KS. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. Front Pediatr. 2017 Jun 19;5:121. doi: 10.3389/fped.2017.00121. eCollection 2017. Review.



Chu L, Friedberg F, Friedman KJ, Littrell N, Stevens S, Vallings R. Exercise and chronic fatigue syndrome: maximize function, minimize post-exertional malaise. Eur J Clin Invest. 2012 Dec;42(12):1362; author reply 1363-5. doi: 10.1111/j.1365-2362.2012.02723.x. Epub 2012 Sep 23. No abstract available.



Bateman L

Friedman KJ, Bateman L, Bested A, Nahle Z. Editorial: Advances in ME/CFS Research and Clinical Care. Front Pediatr. 2019 Sep 18;7:370. doi: 10.3389/fped.2019.00370. eCollection 2019. No abstract available.



Valdez AR, Hancock EE, Adebayo S, Kiernicki DJ, Proskauer D, Attewell JR, Bateman L, DeMaria A Jr, Lapp CW, Rowe PC, Proskauer C. Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning. Front Pediatr. 2019 Jan 8;6:412. doi: 10.3389/fped.2018.00412. eCollection 2018.



Nagy-Szakal D, Barupal DK, Lee B, Che X, Williams BL, Kahn EJR, Ukaigwe JE, Bateman L, Klimas NG, Komaroff AL, Levine S, Montoya JG, Peterson DL, Levin B, Hornig M, Fiehn O, Lipkin WI. Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics. Sci Rep. 2018 Jul 3;8(1):10056. doi: 10.1038/s41598-018-28477-9.



Nagy-Szakal D, Williams BL, Mishra N, Che X, Lee B, Bateman L, Klimas NG, Komaroff AL, Levine S, Montoya JG, Peterson DL, Ramanan D, Jain K, Eddy ML, Hornig M, Lipkin WI. Fecal metagenomic profiles in subgroups of patients with myalgic encephalomyelitis/chronic fatigue syndrome. Microbiome. 2017 Apr 26;5(1):44. doi: 10.1186/s40168-017-0261-y.



Unger ER, Lin JS, Tian H, Natelson BH, Lange G, Vu D, Blate M, Klimas NG, Balbin EG, Bateman L, Allen A, Lapp CW, Springs W, Kogelnik AM, Phan CC, Danver J, Podell RN, Fitzpatrick T, Peterson DL, Gottschalk CG, Rajeevan MS; MCAM Study Group. Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM): Design and Implementation of a Prospective/Retrospective Rolling Cohort Study. Am J Epidemiol. 2017 Apr 15;185(8):617-626. doi: 10.1093/aje/kwx029. Erratum in: Am J Epidemiol. 2017 Jul 1;186(1):129.



Chu L, Bateman L, Davenport T, Stein E, Stevens S. Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Ann Intern Med. 2015 Dec 1;163(11):887. doi: 10.7326/L15-5174. No abstract available.



Hornig M, Montoya JG, Klimas NG, Levine S, Felsenstein D, Bateman L, Peterson DL, Gottschalk CG, Schultz AF, Che X, Eddy ML, Komaroff AL, Lipkin WI. Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Sci Adv. 2015 Feb;1(1). pii: e1400121.



Irlbeck DM, Vernon SD, McCleary KK, Bateman L, Klimas NG, Lapp CW, Peterson DL, Brown JR, Remlinger KS, Wilfret DA, Gerondelis P. No association found between the detection of either xenotropic murine leukemia virus-related virus or polytropic murine leukemia virus and chronic fatigue syndrome in a blinded, multi-site, prospective study by the establishment and use of the SolveCFS BioBank. BMC Res Notes. 2014 Aug 4;7:461. doi: 10.1186/1756-0500-7-461.



Light KC, Agarwal N, Iacob E, White AT, Kinney AY, VanHaitsma TA, Aizad H, Hughen RW, Bateman L, Light AR. Differing leukocyte gene expression profiles associated with fatigue in patients with prostate cancer versus chronic fatigue syndrome. Psychoneuroendocrinology. 2013 Dec;38(12):2983-95. doi: 10.1016/j.psyneuen.2013.08.008. Epub 2013 Sep 6.



Bateman L, Spotila J. Article on CFS does not reflect current best treatment practices. Am Fam Physician. 2013 Apr 1;87(7):Online. No abstract available.



Alter HJ, Mikovits JA, Switzer WM, Ruscetti FW, Lo SC, Klimas N, Komaroff AL, Montoya JG, Bateman L, Levine S, Peterson D, Levin B, Hanson MR, Genfi A, Bhat M, Zheng H, Wang R, Li B, Hung GC, Lee LL, Sameroff S, Heneine W, Coffin J, Hornig M, Lipkin WI. A multicenter blinded analysis indicates no association between chronic fatigue syndrome/myalgic encephalomyelitis and either xenotropic murine leukemia virus-related virus or polytropic murine leukemia virus. mBio. 2012 Sep 18;3(5). pii: e00266-12. doi: 10.1128/mBio.00266-12. Print 2012.



Strayer DR, Carter WA, Stouch BC, Stevens SR, Bateman L, Cimoch PJ, Lapp CW, Peterson DL; Chronic Fatigue Syndrome AMP-516 Study Group, Mitchell WM. A double-blind, placebo-controlled, randomized, clinical trial of the TLR-3 agonist rintatolimod in severe cases of chronic fatigue syndrome. PLoS One. 2012;7(3):e31334. doi: 10.1371/journal.pone.0031334. Epub 2012 Mar 14.



Baumgarten-Austrheim B

I think may not have published any more publications in the field in the peer-review literature since



Bell DS

Brown MM, Bell DS, Jason LA, Christos C, Bell DE. Understanding long-term outcomes of chronic fatigue syndrome. J Clin Psychol. 2012 Sep;68(9):1028-35. doi: 10.1002/jclp.21880. Epub 2012 Jun 29.



Carlo-Stella N

I think may not have published any more publications in the field in the peer-review literature since



Chia J

I think may not have published any more publications in the field in the peer-review literature since



Darragh A

I think may not have published any more publications in the field in the peer-review literature since



Jo D

Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J Intern Med. 2012 Jan;271(1):64-81. doi: 10.1111/j.1365-2796.2011.02405.x. Epub 2011 Jul 13.



Lewis D

Lidbury BA, Kita B, Richardson AM, Lewis DP, Privitera E, Hayward S, de Kretser D, Hedger M. Rethinking ME/CFS Diagnostic Reference Intervals via Machine Learning, and the Utility of Activin B for Defining Symptom Severity. Diagnostics (Basel). 2019 Jul 19;9(3). pii: E79. doi: 10.3390/diagnostics9030079.



McGregor NR, Armstrong CW, Lewis DP, Gooley PR. Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases. Diagnostics (Basel). 2019 Jul 4;9(3). pii: E70. doi: 10.3390/diagnostics9030070.



Richardson AM, Lewis DP, Kita B, Ludlow H, Groome NP, Hedger MP, de Kretser DM, Lidbury BA. Weighting of orthostatic intolerance time measurements with standing difficulty score stratifies ME/CFS symptom severity and analyte detection. J Transl Med. 2018 Apr 12;16(1):97. doi: 10.1186/s12967-018-1473-z.



Wallis A, Ball M, Butt H, Lewis DP, McKechnie S, Paull P, Jaa-Kwee A, Bruck D. Open-label pilot for treatment targeting gut dysbiosis in myalgic encephalomyelitis/chronic fatigue syndrome: neuropsychological symptoms and sex comparisons. J Transl Med. 2018 Feb 6;16(1):24. doi: 10.1186/s12967-018-1392-z. Erratum in: J Transl Med. 2018 Feb 23;16(1):39.



Wallis A, Ball M, McKechnie S, Butt H, Lewis DP, Bruck D. Examining clinical similarities between myalgic encephalomyelitis/chronic fatigue syndrome and D-lactic acidosis: a systematic review. J Transl Med. 2017 Jun 7;15(1):129. doi: 10.1186/s12967-017-1229-1. Review.



Lidbury BA, Kita B, Lewis DP, Hayward S, Ludlow H, Hedger MP, de Kretser DM. Activin B is a novel biomarker for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) diagnosis: a cross sectional study. J Transl Med. 2017 Mar 16;15(1):60. doi: 10.1186/s12967-017-1161-4.



Jackson ML, Butt H, Ball M, Lewis DP, Bruck D. Sleep quality and the treatment of intestinal microbiota imbalance in Chronic Fatigue Syndrome: A pilot study. Sleep Sci. 2015 Nov;8(3):124-33. doi: 10.1016/j.slsci.2015.10.001. Epub 2015 Oct 23.



Reynolds GK, Lewis DP, Richardson AM, Lidbury BA. Comorbidity of postural orthostatic tachycardia syndrome and chronic fatigue syndrome in an Australian cohort. J Intern Med. 2014 Apr;275(4):409-17. doi: 10.1111/joim.12161. Epub 2013 Nov 29.



Light AR:

Cook DB, Light AR, Light KC, Broderick G, Shields MR, Dougherty RJ, Meyer JD, VanRiper S, Stegner AJ, Ellingson LD, Vernon SD. Neural consequences of post-exertion malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Brain Behav Immun. 2017 May;62:87-99. doi: 10.1016/j.bbi.2017.02.009. Epub 2017 Feb 17.



Iacob E, Light AR, Donaldson GW, Okifuji A, Hughen RW, White AT, Light KC. Gene Expression Factor Analysis to Differentiate Pathways Linked to Fibromyalgia, Chronic Fatigue Syndrome, and Depression in a Diverse Patient Sample. Arthritis Care Res (Hoboken). 2016 Jan;68(1):132-40. doi: 10.1002/acr.22639.



Light KC, Agarwal N, Iacob E, White AT, Kinney AY, VanHaitsma TA, Aizad H, Hughen RW, Bateman L, Light AR. Differing leukocyte gene expression profiles associated with fatigue in patients with prostate cancer versus chronic fatigue syndrome. Psychoneuroendocrinology. 2013 Dec;38(12):2983-95. doi: 10.1016/j.psyneuen.2013.08.008. Epub 2013 Sep 6.



White AT, Light AR, Hughen RW, Vanhaitsma TA, Light KC. Differences in metabolite-detecting, adrenergic, and immune gene expression after moderate exercise in patients with chronic fatigue syndrome, patients with multiple sclerosis, and healthy controls. Psychosom Med. 2012 Jan;74(1):46-54. doi: 10.1097/PSY.0b013e31824152ed. Epub 2011 Dec 30.



Light KC, White AT, Tadler S, Iacob E, Light AR. Genetics and Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome. Pain Res Treat. 2012;2012:427869. doi: 10.1155/2012/427869. Epub 2011 Sep 29.
 
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Marshall-Gradisnik

S Eaton-Fitch N, Johnston SC, Zalewski P, Staines D, Marshall-Gradisnik S. Qual Life Res. 2020 Jan 22. doi: 10.1007/s11136-019-02411-6. [Epub ahead of print] Health-related quality of life in patients with myalgic encephalomyelitis/chronic fatigue syndrome: an Australian cross-sectional study.



Balinas C, Cabanas H, Staines D, Marshall-Gradisnik S. Transient receptor potential melastatin 2 channels are overexpressed in myalgic encephalomyelitis/chronic fatigue syndrome patients. J Transl Med. 2019 Dec 3;17(1):401. doi: 10.1186/s12967-019-02155-4.



Cabanas H, Muraki K, Staines D, Marshall-Gradisnik S. Naltrexone Restores Impaired Transient Receptor Potential Melastatin 3 Ion Channel Function in Natural Killer Cells From Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. Front Immunol. 2019 Oct 31;10:2545. doi: 10.3389/fimmu.2019.02545. eCollection 2019.



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 Nov 14;8(1):279. doi: 10.1186/s13643-019-1202-6. Review.



Barnden LR, Shan ZY, Staines DR, Marshall-Gradisnik S, Finegan K, Ireland T, Bhuta S. Intra brainstem connectivity is impaired in chronic fatigue syndrome. Neuroimage Clin. 2019;24:102045. doi: 10.1016/j.nicl.2019.102045. Epub 2019 Oct 19. Select item 314455227.



Corbitt M, Eaton-Fitch N, Staines D, Cabanas H, Marshall-Gradisnik S. A systematic review of cytokines in chronic fatigue syndrome/myalgic encephalomyelitis/systemic exertion intolerance disease (CFS/ME/SEID). BMC Neurol. 2019 Aug 24;19(1):207. doi: 10.1186/s12883-019-1433-0.



Balinas C, Cabanas H, Staines D, Marshall-Gradisnik S. Identification and characterisation of transient receptor potential melastatin 2 and CD38 channels on natural killer cells using the novel application of flow cytometry. BMC Immunol. 2019 May 10;20(1):14. doi: 10.1186/s12865-019-0293-0.



Cabanas H, Muraki K, Balinas C, Eaton-Fitch N, Staines D, Marshall-Gradisnik S. Validation of impaired Transient Receptor Potential Melastatin 3 ion channel activity in natural killer cells from Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis patients. Mol Med. 2019 Apr 23;25(1):14. doi: 10.1186/s10020-019-0083-4.



Slomko J, Newton JL, Kujawski S, Tafil-Klawe M, Klawe J, Staines D, Marshall-Gradisnik S, Zalewski P. Prevalence and characteristics of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study. BMJ Open. 2019 Mar 7;9(3):e023955. doi: 10.1136/bmjopen-2018-023955.



Du Preez S, Corbitt M, Cabanas H, Eaton N, Staines D, Marshall-Gradisnik S. A systematic review of enteric dysbiosis in chronic fatigue syndrome/myalgic encephalomyelitis. Syst Rev. 2018 Dec 20;7(1):241. doi: 10.1186/s13643-018-0909-0.



Barnden LR, Shan ZY, Staines DR, Marshall-Gradisnik S, Finegan K, Ireland T, Bhuta S. Hyperintense sensorimotor T1 spin echo MRI is associated with brainstem abnormality in chronic fatigue syndrome. Neuroimage Clin. 2018;20:102-109. doi: 10.1016/j.nicl.2018.07.011. Epub 2018 Jul 11.



Cabanas H, Muraki K, Eaton N, Balinas C, Staines D, Marshall-Gradisnik S. Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients. Mol Med. 2018 Aug 14;24(1):44. doi: 10.1186/s10020-018-0046-1.



Shan ZY, Finegan K, Bhuta S, Ireland T, Staines DR, Marshall-Gradisnik SM, Barnden LR. Brain function characteristics of chronic fatigue syndrome: A task fMRI study. Neuroimage Clin. 2018 Apr 25;19:279-286. doi: 10.1016/j.nicl.2018.04.025. eCollection 2018.



Nguyen T, Staines D, Johnston S, Marshall-Gradisnik S. Reduced glycolytic reserve in isolated natural killer cells from Myalgic encephalomyelitis/ chronic fatigue syndrome patients: A preliminary investigation. Asian Pac J Allergy Immunol. 2019 Jun;37(2):102-108. doi: 10.12932/AP-011117-0188.



Eaton N, Cabanas H, Balinas C, Klein A, Staines D, Marshall-Gradisnik S. Rituximab impedes natural killer cell function in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients: A pilot in vitro investigation. BMC Pharmacol Toxicol. 2018 Mar 27;19(1):12. doi: 10.1186/s40360-018-0203-8.



Corbitt M, Campagnolo N, Staines D, Marshall-Gradisnik S. A Systematic Review of Probiotic Interventions for Gastrointestinal Symptoms and Irritable Bowel Syndrome in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Probiotics Antimicrob Proteins. 2018 Sep;10(3):466-477. doi: 10.1007/s12602-018-9397-8.



Balinas C, Nguyen T, Johnston S, Smith P, Staines D, Marshall-Gradisnik S. Investigation of mast cell toll-like receptor 3 in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Systemic Mastocytosis using the novel application of autoMACS magnetic separation and flow cytometry. Asian Pac J Allergy Immunol. 2018 Dec;36(4):257-264. doi: 10.12932/AP-200517-0086.



Shan ZY, Finegan K, Bhuta S, Ireland T, Staines DR, Marshall-Gradisnik SM, Barnden LR.Decreased Connectivity and Increased Blood Oxygenation Level Dependent Complexity in the Default Mode Network in Individuals with Chronic Fatigue Syndrome. Brain Connect. 2018 Feb;8(1):33-39. doi: 10.1089/brain.2017.0549. Epub 2018 Jan 3.



Shan ZY, Kwiatek R, Burnet R, Del Fante P, Staines DR, Marshall-Gradisnik SM, Barnden LR. Medial prefrontal cortex deficits correlate with unrefreshing sleep in patients with chronic fatigue syndrome. NMR Biomed. 2017 Oct;30(10). doi: 10.1002/nbm.3757. Epub 2017 Jun 29.



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 Jun;30(3):247-259. doi: 10.1111/jhn.12435. Epub 2017 Jan 22. Review.



Johnston S, Staines D, Klein A, Marshall-Gradisnik S. A targeted genome association study examining transient receptor potential ion channels, acetylcholine receptors, and adrenergic receptors in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. BMC Med Genet. 2016 Nov 11;17(1):79.



Marshall-Gradisnik S, Johnston S, Chacko A, Nguyen T, Smith P, Staines D. Single nucleotide polymorphisms and genotypes of transient receptor potential ion channel and acetylcholine receptor genes from isolated B lymphocytes in myalgic encephalomyelitis/chronic fatigue syndrome patients. J Int Med Res. 2016 Dec;44(6):1381-1394. doi: 10.1177/0300060516671622. Epub 2016 Nov 11.



Nguyen T, Johnston S, Clarke L, Smith P, Staines D, Marshall-Gradisnik S. Impaired calcium mobilization in natural killer cells from chronic fatigue syndrome/myalgic encephalomyelitis patients is associated with transient receptor potential melastatin 3 ion channels. Clin Exp Immunol. 2017 Feb;187(2):284-293. doi: 10.1111/cei.12882. Epub 2016 Nov 23.



Chacko A, Staines DR, Johnston SC, Marshall-Gradisnik SM. Dysregulation of Protein Kinase Gene Expression in NK Cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Patients. Gene Regul Syst Bio. 2016 Aug 28;10:85-93. doi: 10.4137/GRSB.S40036. eCollection 2016.



Nguyen T, Johnston S, Chacko A, Gibson D, Cepon J, Smith P, Staines D, Marshall-Gradisnik S. Novel characterisation of mast cell phenotypes from peripheral blood mononuclear cells in chronic fatigue syndrome/myalgic encephalomyelitis patients. Asian Pac J Allergy Immunol. 2017 Jun;35(2):75-81. doi: 10.12932/AP0771.



Huth TK, Brenu EW, Staines DR, Marshall-Gradisnik SM. Killer Cell Immunoglobulin-like Receptor Genotype and Haplotype Investigation of Natural Killer Cells from an Australian Population of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Patients. Gene Regul Syst Bio. 2016 Jun 19;10:43-9. doi: 10.4137/GRSB.S39861. eCollection 2016.



Johnston SC, Staines DR, Marshall-Gradisnik SM. Epidemiological characteristics of chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients. Clin Epidemiol. 2016 May 17;8:97-107. doi: 10.2147/CLEP.S96797. eCollection 2016.



Nguyen T, Staines D, Nilius B, Smith P, Marshall-Gradisnik S. Novel identification and characterisation of Transient receptor potential melastatin 3 ion channels on Natural Killer cells and B lymphocytes: effects on cell signalling in Chronic fatigue syndrome/Myalgic encephalomyelitis patients. Biol Res. 2016 May 31;49(1):27. doi: 10.1186/s40659-016-0087-2.



Collatz A, Johnston SC, Staines DR, Marshall-Gradisnik SM. A Systematic Review of Drug Therapies for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Clin Ther. 2016 Jun;38(6):1263-1271.e9. doi: 10.1016/j.clinthera.2016.04.038. Epub 2016 May 24. Review.



Shan ZY, Kwiatek R, Burnet R, Del Fante P, Staines DR, Marshall-Gradisnik SM, Barnden LR. Progressive brain changes in patients with chronic fatigue syndrome: A longitudinal MRI study. J Magn Reson Imaging. 2016 Nov;44(5):1301-1311. doi: 10.1002/jmri.25283. Epub 2016 Apr 28.



Marshall-Gradisnik S, Huth T, Chacko A, Johnston S, Smith P, Staines D. Natural killer cells and single nucleotide polymorphisms of specific ion channels and receptor genes in myalgic encephalomyelitis/chronic fatigue syndrome. Appl Clin Genet. 2016 Mar 31;9:39-47. doi: 10.2147/TACG.S99405. eCollection 2016.



Huth TK, Staines D, Marshall-Gradisnik S. ERK1/2, MEK1/2 and p38 downstream signalling molecules impaired in CD56 dim CD16+ and CD56 bright CD16 dim/- natural killer cells in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients. J Transl Med. 2016 Apr 21;14:97. doi: 10.1186/s12967-016-0859-z.



Ramos S, Brenu E, Broadley S, Kwiatek R, Ng J, Nguyen T, Freeman S, Staines D, Marshall-Gradisnik S. Regulatory T, natural killer T and ?d T cells in multiple sclerosis and chronic fatigue syndrome/myalgic encephalomyelitis: a comparison. Asian Pac J Allergy Immunol. 2016 Dec;34(4):300-305. doi: 10.12932/AP0733.



Brenu EW, Broadley S, Nguyen T, Johnston S, Ramos S, Staines D, Marshall-Gradisnik S. A Preliminary Comparative Assessment of the Role of CD8+ T Cells in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Multiple Sclerosis. J Immunol Res. 2016;2016:9064529. doi: 10.1155/2016/9064529. Epub 2016 Jan 4.



Hardcastle SL, Brenu EW, Johnston S, Nguyen T, Huth T, Ramos S, Staines D, Marshall-Gradisnik S. Serum Immune Proteins in Moderate and Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Patients. Int J Med Sci. 2015 Sep 5;12(10):764-72. doi: 10.7150/ijms.12399. eCollection 2015.



Huth TK, Brenu EW, Ramos S, Nguyen T, Broadley S, Staines D, Marshall-Gradisnik S. Pilot Study of Natural Killer Cells in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Multiple Sclerosis. Scand J Immunol. 2016 Jan;83(1):44-51. doi: 10.1111/sji.12388.



Hardcastle SL, Brenu EW, Johnston S, Nguyen T, Huth T, Ramos S, Staines D, Marshall-Gradisnik S. Longitudinal analysis of immune abnormalities in varying severities of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients. J Transl Med. 2015 Sep 14;13:299. doi: 10.1186/s12967-015-0653-3.



Hardcastle SL, Brenu EW, Johnston S, Nguyen T, Huth T, Wong N, Ramos S, Staines D, Marshall-Gradisnik S. Characterisation of cell functions and receptors in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). BMC Immunol. 2015 Jun 2;16:35. doi: 10.1186/s12865-015-0101-4.



Peterson D, Brenu EW, Gottschalk G, Ramos S, Nguyen T, Staines D, Marshall-Gradisnik S. Cytokines in the cerebrospinal fluids of patients with chronic fatigue syndrome/myalgic encephalomyelitis. Mediators Inflamm. 2015;2015:929720. doi: 10.1155/2015/929720. Epub 2015 Mar 5.



Hardcastle SL, Brenu EW, Johnston S, Staines D, Marshall-Gradisnik S. Severity Scales for Use in Primary Health Care to Assess Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Health Care Women Int. 2016 Jun;37(6):671-86. doi: 10.1080/07399332.2014.962139. Epub 2014 Dec 20. Review.



Brenu EW, Ashton KJ, Batovska J, Staines DR, Marshall-Gradisnik SM. High-throughput sequencing of plasma microRNA in chronic fatigue syndrome/myalgic encephalomyelitis. PLoS One. 2014 Sep 19;9(9):e102783. doi: 10.1371/journal.pone.0102783. eCollection 2014.



Johnston SC, Brenu EW, Hardcastle SL, Huth TK, Staines DR, Marshall-Gradisnik SM. A comparison of health status in patients meeting alternative definitions for chronic fatigue syndrome/myalgic encephalomyelitis. Health Qual Life Outcomes. 2014 Apr 30;12:64. doi: 10.1186/1477-7525-12-64.



Brenu EW, Huth TK, Hardcastle SL, Fuller K, Kaur M, Johnston S, Ramos SB, Staines DR, Marshall-Gradisnik SM. Role of adaptive and innate immune cells in chronic fatigue syndrome/myalgic encephalomyelitis. Int Immunol. 2014 Apr;26(4):233-42. doi: 10.1093/intimm/dxt068. Epub 2013 Dec 16.



Brenu EW, Hardcastle SL, Atkinson GM, van Driel ML, Kreijkamp-Kaspers S, Ashton KJ, Staines DR, Marshall-Gradisnik SM. Natural killer cells in patients with severe chronic fatigue syndrome. Auto Immun Highlights. 2013 Apr 16;4(3):69-80. doi: 10.1007/s13317-013-0051-x. eCollection 2013 Dec.



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 Jun;23(6):371-6. doi: 10.1016/j.annepidem.2013.04.003. Review.



Johnston S, Brenu EW, Staines D, Marshall-Gradisnik S. The prevalence of chronic fatigue syndrome/ myalgic encephalomyelitis: a meta-analysis. Clin Epidemiol. 2013;5:105-10. doi: 10.2147/CLEP.S39876. Epub 2013 Mar 26. Brenu EW, Ashton KJ, van Driel M, Staines DR, Peterson D, Atkinson GM, Marshall-Gradisnik SM. Cytotoxic lymphocyte microRNAs as prospective biomarkers for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. J Affect Disord. 2012 Dec 10;141(2-3):261-9. doi: 10.1016/j.jad.2012.03.037. Epub 2012 May 8.



Brenu EW, van Driel ML, Staines DR, Ashton KJ, Hardcastle SL, Keane J, Tajouri L, Peterson D, Ramos SB, Marshall-Gradisnik SM. Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis. J Transl Med. 2012 May 9;10:88. doi: 10.1186/1479-5876-10-88.



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 Nov;40(11):907-12.



Mena I

I think may not have published any more publications in the field in the peer-review literature since



Mikovits JA

Alter HJ, Mikovits JA, Switzer WM, Ruscetti FW, Lo SC, Klimas N, Komaroff AL, Montoya JG, Bateman L, Levine S, Peterson D, Levin B, Hanson MR, Genfi A, Bhat M, Zheng H, Wang R, Li B, Hung GC, Lee LL, Sameroff S, Heneine W, Coffin J, Hornig M, Lipkin WI. A multicenter blinded analysis indicates no association between chronic fatigue syndrome/myalgic encephalomyelitis and either xenotropic murine leukemia virus-related virus or polytropic murine leukemia virus. mBio. 2012 Sep 18;3(5). pii: e00266-12. doi: 10.1128/mBio.00266-12. Print 2012.



Miwa K

Miwa K, Inoue Y. The etiologic relation between disequilibrium and orthostatic intolerance in patients with myalgic encephalomyelitis (chronic fatigue syndrome). J Cardiol. 2018 Sep;72(3):261-264. doi: 10.1016/j.jjcc.2018.02.010. Epub 2018 Mar 24.



Miwa K. Down-regulation of renin-aldosterone and antidiuretic hormone systems in patients with myalgic encephalomyelitis/chronic fatigue syndrome. J Cardiol. 2017 Apr;69(4):684-688. doi: 10.1016/j.jjcc.2016.06.003. Epub 2016 Jul 9. Small heart with low cardiac output for orthostatic intolerance in patients with chronic fatigue syndrome.



Miwa K, Fujita M. Small heart with low cardiac output for orthostatic intolerance in patients with chronic fatigue syndrome. Clin Cardiol. 2011 Dec;34(12):782-6. doi: 10.1002/clc.20962. Epub 2011 Nov 28.



Murovska M

Zalewski P, Kujawski S, Tudorowska M, Morten K, Tafil-Klawe M, Klawe JJ, Strong J, Estévez-López F, Murovska M, Newton JL, The European Network On Me/Cfs Euromene. The Impact of a Structured Exercise Programme upon Cognitive Function in Chronic Fatigue Syndrome Patients. Brain Sci. 2019 Dec 19;10(1). pii: E4. doi: 10.3390/brainsci10010004.



Rasa S, Nora-Krukle Z, Henning N, Eliassen E, Shikova E, Harrer T, Scheibenbogen C, Murovska M, Prusty BK; European Network on ME/CFS (EUROMENE). Chronic viral infections in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). J Transl Med. 2018 Oct 1;16(1):268. doi: 10.1186/s12967-018-1644-y. Review.



Estévez-López F, Castro-Marrero J, Wang X, Bakken IJ, Ivanovs A, Nacul L, Sepúlveda N, Strand EB, Pheby D, Alegre J, Scheibenbogen C, Shikova E, Lorusso L, Capelli E, Sekulic S, Lacerda E, Murovska M; European Network on ME/CFS (EUROMENE). Prevalence and incidence of myalgic encephalomyelitis/chronic fatigue syndrome in Europe-the Euro-epiME study from the European network EUROMENE: a protocol for a systematic review. BMJ Open. 2018 Sep 4;8(9):e020817. doi: 10.1136/bmjopen-2017-020817.



Sotzny F, Blanco J, Capelli E, Castro-Marrero J, Steiner S, Murovska M, Scheibenbogen C; European Network on ME/CFS (EUROMENE). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Evidence for an autoimmune disease. Autoimmun Rev. 2018 Jun;17(6):601-609. doi: 10.1016/j.autrev.2018.01.009. Epub 2018 Apr 7. Review.



Scheibenbogen C, Freitag H, Blanco J, Capelli E, Lacerda E, Authier J, Meeus M, Castro Marrero J, Nora-Krukle Z, Oltra E, Strand EB, Shikova E, Sekulic S, Murovska M. The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE. J Transl Med. 2017 Jul 26;15(1):162. doi: 10.1186/s12967-017-1263-z. Review.



Rasa S, Nora-Krukle Z, Chapenko S, Krumina A, Roga S, Murovska M. No evidence of XMRV provirus sequences in patients with myalgic encephalomyelitis/chronic fatigue syndrome and individuals with unspecified encephalopathy. New Microbiol. 2014 Jan;37(1):17-24. Epub 2014 Jan 15.



Chapenko S, Krumina A, Logina I, Rasa S, Chistjakovs M, Sultanova A, Viksna L, Murovska M. Association of active human herpesvirus-6, -7 and parvovirus b19 infection with clinical outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome. Adv Virol. 2012;2012:205085. doi: 10.1155/2012/205085. Epub 2012 Aug 13.
 
Pall ML

I think may not have published any more publications in the field in the peer-review literature since



Stevens S

Davenport TE, Lehnen M, Stevens SR, VanNess JM, Stevens J, Snell CR. Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? Front Pediatr. 2019 Mar 22;7:82. doi: 10.3389/fped.2019.00082. eCollection 2019. Review.



Bouquet J, Li T, Gardy JL, Kang X, Stevens S, Stevens J, VanNess M, Snell C, Potts J, Miller RR, Morshed M, McCabe M, Parker S, Uyaguari M, Tang P, Steiner T, Chan WS, De Souza AM, Mattman A, Patrick DM, Chiu CY. Whole blood human transcriptome and virome analysis of ME/CFS patients experiencing post-exertional malaise following cardiopulmonary exercise testing. PLoS One. 2019 Mar 21;14(3):e0212193. doi: 10.1371/journal.pone.0212193. eCollection 2019.



Stevens S, Snell C, Stevens J, Keller B, VanNess JM. Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Front Pediatr. 2018 Sep 4;6:242. doi: 10.3389/fped.2018.00242. eCollection 2018.



Davenport TE, Stevens SR, VanNess JM, Stevens J, Snell CR. Checking our blind spots: current status of research evidence summaries in ME/CFS. Br J Sports Med. 2019 Oct;53(19):1198. doi: 10.1136/bjsports-2018-099553. Epub 2018 Jul 17. No abstract available.



Chu L, Bateman L, Davenport T, Stein E, Stevens S. Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Ann Intern Med. 2015 Dec 1;163(11):887. doi: 10.7326/L15-5174. No abstract available.



Snell CR, Stevens SR, Davenport TE, Van Ness JM. Discriminative validity of metabolic and workload measurements for identifying people with chronic fatigue syndrome. Phys Ther. 2013 Nov;93(11):1484-92. doi: 10.2522/ptj.20110368. Epub 2013 Jun 27.



Chu L, Friedberg F, Friedman KJ, Littrell N, Stevens S, Vallings R. Exercise and chronic fatigue syndrome: maximize function, minimize post-exertional malaise. Eur J Clin Invest. 2012 Dec;42(12):1362; author reply 1363-5. doi: 10.1111/j.1365-2362.2012.02723.x. Epub 2012 Sep 23. No abstract available.



Strayer DR, Carter WA, Stouch BC, Stevens SR, Bateman L, Cimoch PJ, Lapp CW, Peterson DL; Chronic Fatigue Syndrome AMP-516 Study Group, Mitchell WM. A double-blind, placebo-controlled, randomized, clinical trial of the TLR-3 agonist rintatolimod in severe cases of chronic fatigue syndrome. PLoS One. 2012;7(3):e31334. doi: 10.1371/journal.pone.0031334. Epub 2012 Mar 14.
 
Thank you, Tom! I think it would be unfortunate to get involved in a name battle at this point, as the underlying pathology of the illness is not known. I don't like CFS, but I have come to accept the compromise term ME/CFS. When there is more evidence and a better understanding of what is going on, we may raise the name issue again and try to find a more appropriate name.
 
What would also be interesting to know is what selection criteria was used in all of the studies listed above (he says with no intention of doing it himself). I'm pretty certain we have noted on a number of occasions that the NCNED researchers have used criteria other than ICC at least.
 
Andy said:
I'm pretty certain we have noted on a number of occasions that the NCNED researchers have used criteria other than ICC at least.
Click to expand...
Yes, a couple of days ago they published a paper on the health-related quality of life of 400 patients seen in their clinic from 2014 to 2018. They write: "To be included in this study, participants were required to fulfil the Fukuda case definition."
 
Andy said:
I'm pretty certain we have noted on a number of occasions that the NCNED researchers have used criteria other than ICC at least.
Click to expand...
Participants were screened using a comprehensive questionnaire corresponding with the CDC, CCC and ICC case definitions. All six CFS/ME patients were defined by the CCC.
Click to expand...
https://www.s4me.info/threads/valid...er-cells-from-cfs-me-2019-cabanas-et-al.9231/

ME/CFS diagnosis fulfilled either Fukuda, CCC or ICC
Click to expand...
https://www.s4me.info/threads/a-sys...ction-in-me-cfs-eaton-fitch-et-al-2019.12210/

The Fukuda (Fukuda et al., 1994) diagnostic criteria were used to determine the existence of CFS
Click to expand...
https://www.s4me.info/threads/brain...drome-a-task-fmri-study-shan-et-al-2018.3872/

We recruited 43 Chronic Fatigue Syndrome (CFS) subjects who met Fukuda criteria
Click to expand...
https://www.s4me.info/threads/hyper...m-abnormality-in-cfs-2018-barnden-et-al.5032/

All quotes from the papers themselves, and all studies have Staines and Marshall-Gradsnik as named authors.

Also from Klimas, quotes again are from the papers.
261 patients diagnosed with the Fukuda criteria
Click to expand...
https://www.s4me.info/threads/post-...s-diagnosed-with-cfs-2019-klimas-et-al.12900/

33 patients with Fukuda-defined ME/CFS
Click to expand...
https://www.s4me.info/threads/treat...les-2019-jeffrey-broderick-klimas-et-al.8508/

It's starting to look like the experts behind the ICC aren't so keen on actually using it themselves.
 
Andy said:
https://www.s4me.info/threads/valid...er-cells-from-cfs-me-2019-cabanas-et-al.9231/


https://www.s4me.info/threads/a-sys...ction-in-me-cfs-eaton-fitch-et-al-2019.12210/


https://www.s4me.info/threads/brain...drome-a-task-fmri-study-shan-et-al-2018.3872/


https://www.s4me.info/threads/hyper...m-abnormality-in-cfs-2018-barnden-et-al.5032/

All quotes from the papers themselves, and all studies have Staines and Marshall-Gradsnik as named authors.

Also from Klimas, quotes again are from the papers.

https://www.s4me.info/threads/post-...s-diagnosed-with-cfs-2019-klimas-et-al.12900/


https://www.s4me.info/threads/treat...les-2019-jeffrey-broderick-klimas-et-al.8508/

It's starting to look like the experts behind the ICC aren't so keen on actually using it themselves.
Click to expand...
#MEAction's survey of specialists was much the same. They preferred CCC and IOM, perhaps because they produce more homogeneous patient groups, or because they're simpler.
 
adambeyoncelowe said:
because they're simpler.
Click to expand...

I think one of the really critical things is how easy are criteria to operationalize and thus being simple is important. This includes things like having clear definitions of things or questions to ask. Jason is one of the few to have done work in this area but to me it is critical.

I think things like PEM can be really hard to get right - if someone paces well they may avoid the worst of it but they do so by good management rather than not having a symptom yet how is it reported. Having a more complex definition like in ICC doesn't help to my mind.

In truth all the criteria are somewhat arbitrary and in someway require clinical judgement (particularly in looking for other causes). Exclusion criteria is another important area for criteria where there is a big difference between the IoM and the others in terms of philosophy.
 
Andy said:
What would also be interesting to know is what selection criteria was used in all of the studies listed above (he says with no intention of doing it himself). I'm pretty certain we have noted on a number of occasions that the NCNED researchers have used criteria other than ICC at least.
Click to expand...

NCNED has mostly used Fukuda and ICC. I once went through and added up how often they used each. I can’t remember the exact figures now, but at the time they used Fukuda more often than ICC.

Don Lewis used CCC. He told me he thought the ICC was a mistake, because it was too complicated for clinical use. In terms of the illness name, he often used “CFS”, though his studies used “ME/CFS”.
 
Thanks to Tom Kindlon for pointing this out. I've made a twitter thread on a related issue, as many patients who harshly disagree with the use of the term ME/CFS seem to be on twitter:



Here's the full text (with numbering per argument rather than per tweet)

"Here are some reasons why I still use the term ME/CFS.

1) Currently, only a tiny minority of scientific studies uses ME-criteria. Most research uses old Fukuda criteria or sometimes the Canadian criteria. So in talking about such research, the term ME/CFS seems more appropriate.

2) The overwhelming majority of patients are still being diagnosed with old CFS criteria. Many of them might have ME but no access to ME experts to get that diagnosis. By using the term ME/CFS in advocacy we’re being inclusive of this patient group. If you only use the term ME, you’re not reaching out to those patients diagnosed with CFS who might meet ME-criteria as well. They won’t find out about your charity, information website or advocacy efforts or they might simply think it’s not about them.

3) Most scientific information that we have about prevalence, prognosis, severity of impairments etc. are based on studies that used old CFS criteria, even though many participants in those trials might also fit ME-criteria. So if you want to use that information in advocacy or to inform the public about the many patients who are severely disabled and receive no proper medical care, the term ME/CFS seems more appropriate. The same goes if you want to inform patients about their prognosis or other aspects of their illness. That’s why the ICC primer constantly refers to CFS studies. When it comes to ME only, we have almost no data, only intuition and anecdotes of patients and clinicians.

4) Sadly, the term ME has its own problems as well. It’s an old, speculative name that refers to a specific pathology which hasn’t been demonstrated in patients who meet ME-criteria and is quite likely inaccurate. In my experience, most doctors realize this as soon as you spell out the name (although they might not always tell you this). Sadly, it forms another obstacle for the patient to be taken seriously. The same problem arises with journalists new to the subject: even if you use ME, you almost always have to start by explaining the name problem. And if you use another name (such as Ramsay's Disease) people googling it will not find respected information or scientific studies about it, which makes it harder to be taken seriously.

5) In my view, using the term ME/CFS doesn’t mean that you’re arguing that ME and CFS are identical. Both have different case definitions and descriptions that capture different but overlapping patient groups. I look forward to the day that we can leave the term CFS behind us and that we have a more accurate name with a well-validated case definition that is based on more than just symptom reports and that is commonly used in research... Sadly this isn’t the case yet. And currently, ME/CFS seems like the most efficient label to get information about our plight known as it is the standard in the scientific literature and medical guidelines all over the world.

6) I also hope that people realize that disbelief, stigma and problems with disability benefits were already there before the name CFS was used. It probably aggravated those, but it cannot be seen as the sole cause and those problems will still be there if we ditch the CFS label."
 
Michiel Tack said:
Thanks to Tom Kindlon for pointing this out. I've made a twitter thread on a related issue, as many patients who harshly disagree with the use of the term ME/CFS seem to be on twitter:



Here's the full text (with numbering per argument rather than per tweet)

"Here are some reasons why I still use the term ME/CFS.

1) Currently, only a tiny minority of scientific studies uses ME-criteria. Most research uses old Fukuda criteria or sometimes the Canadian criteria. So in talking about such research, the term ME/CFS seems more appropriate.

2) The overwhelming majority of patients are still being diagnosed with old CFS criteria. Many of them might have ME but no access to ME experts to get that diagnosis. By using the term ME/CFS in advocacy we’re being inclusive of this patient group. If you only use the term ME, you’re not reaching out to those patients diagnosed with CFS who might meet ME-criteria as well. They won’t find out about your charity, information website or advocacy efforts or they might simply think it’s not about them.

3) Most scientific information that we have about prevalence, prognosis, severity of impairments etc. are based on studies that used old CFS criteria, even though many participants in those trials might also fit ME-criteria. So if you want to use that information in advocacy or to inform the public about the many patients who are severely disabled and receive no proper medical care, the term ME/CFS seems more appropriate. The same goes if you want to inform patients about their prognosis or other aspects of their illness. That’s why the ICC primer constantly refers to CFS studies. When it comes to ME only, we have almost no data, only intuition and anecdotes of patients and clinicians.

4) Sadly, the term ME has its own problems as well. It’s an old, speculative name that refers to a specific pathology which hasn’t been demonstrated in patients who meet ME-criteria and is quite likely inaccurate. In my experience, most doctors realize this as soon as you spell out the name (although they might not always tell you this). Sadly, it forms another obstacle for the patient to be taken seriously. The same problem arises with journalists new to the subject: even if you use ME, you almost always have to start by explaining the name problem. And if you use another name (such as Ramsay's Disease) people googling it will not find respected information or scientific studies about it, which makes it harder to be taken seriously.

5) In my view, using the term ME/CFS doesn’t mean that you’re arguing that ME and CFS are identical. Both have different case definitions and descriptions that capture different but overlapping patient groups. I look forward to the day that we can leave the term CFS behind us and that we have a more accurate name with a well-validated case definition that is based on more than just symptom reports and that is commonly used in research... Sadly this isn’t the case yet. And currently, ME/CFS seems like the most efficient label to get information about our plight known as it is the standard in the scientific literature and medical guidelines all over the world.

6) I also hope that people realize that disbelief, stigma and problems with disability benefits were already there before the name CFS was used. It probably aggravated those, but it cannot be seen as the sole cause and those problems will still be there if we ditch the CFS label."
Click to expand...

I'd like to share this on Facebook. Is that OK? I could post a link to here but think more people would read it if the text was posted. Of course, if you post it yourself there, it would be even better.
 
I do greatly appreciate the work that @Tom Kindlon and @Michiel Tack have done on this. It is clear that the diagnosis you receive depends more on when and where you were diagnosed far more than any other considerations.

I have been concerned for some time that we are excluding patients from the conversation who were diagnosed with CFS here in the US, especially a decade or more before now, who have no idea about the term ME. No one likes the term CFS, but that was the diagnosis given in the US and, to a large extent, still is.

About a week ago, I reconnected with an old high school friend who was diagnosed with CFS by Stephen Straus back in the ‘80s. She looked at my FB page and thought that I must have a different disease since I was talking about Myalgic Encephalomyelitis. (I usually use ME/CFS for this reason.) Here in GA, we have reconnected with an old CFS support group in a town far from Atlanta who had never heard of ME and are not active online. I don’t want those with a diagnosis of CFS to be lost.

I’m guessing that most of you were not around when ICC was first published. I was, and I remember it being considered, even by many who signed it, as basically a first cut at improving CCC. There were supposed to be discussions about it, but those discussions were never held.

One of ME Action’s demands for NIH has been to gather together people who are experts on this disease and on operationalizing and validating disease criteria to come up with as good a set of criteria as possible for research. In my opinion, we can do better than any of the current criteria, but there will be no definitive criteria until we have better information about this disease.

Until then, I would consider the 2 restrictions proposed - 1) for Oxford and Fukuda to be considered obsolete, and 2) for PEM to be required - to be our best shot at being reasonably sure that we are all talking about the same disease, whatever we call it.
 
With this and the relevant ME Action survey as well as a few discussions here and there it feels like the larger community has assessed the situation concerning illness criteria and concluded that the direction things are going is fine. That direction being away from criteria that don't require PEM, and and towards the CCC and IOM criteria for research and clinical use respectively. And the ICC criteria are considered flawed by many.
 
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We can also abandon the term "neuroimmune" I think. The immune system may well be doing something in the brain but we don't know what. There is no evidence as far as I know for "postexertional neuroimmune exhaustion", which would be an exhaustion of the immune system in the brain following exercise. Reading between the lines the term appears to suggest the reactivation of pathogens in the brain following exercise, which is mere speculation.

I would like to see ME, CFS, ME/CFS, PEM replaced with more appropriate terms but we have insufficient understanding to come up with a good name. And ME/CFS may well turn out to be a bunch of diseases in which case we might end up with ME/CFS type 1 to 3.
 
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Byron Hyde is not an author of the ICC but someone who is often referenced by patients who protest against the use of the term ME/CFS.

I noticed that in the book Hyde edited in 1992, he repeatedly used the term M.E./CFS. The book is titled "The Clinical and Scientific Basis of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome". A free copy is available on this website.
 
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