RESEARCH USING PATIENTS
WHO FIT THE
INTERNATIONAL CONSENSUS CRITERIA*
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2021
Elements of Suffering in ME/CFS: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected
Fennell, Dorr & George (USA) - ICC
"This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS." - 09 May 21
Even though this report uses ME/CFS, it applies to ME. ~ MEI
Deconditioning does not explain orthostatic intolerance in ME/CFS
van Campen, Rowe & Visser
(Netherlands, USA) - ICC and Fukuda - This study shows that in ME/CFS patients orthostatic intolerance is not caused by deconditioning as defined on cardiopulmonary exercise testing. An abnormal high decline in cerebral blood flow during orthostatic stress was present in all ME/CFS patients regardless of their %peak VO2 results on cardiopulmonary exercise testing. - 04 May 21
van Campen, Rowe & Visser
(Netherlands, USA) - ICC and Fukuda - This study shows that in ME/CFS patients orthostatic intolerance is not caused by deconditioning as defined on cardiopulmonary exercise testing. An abnormal high decline in cerebral blood flow during orthostatic stress was present in all ME/CFS patients regardless of their %peak VO2 results on cardiopulmonary exercise testing. - 04 May 21
Skewing of the B cell receptor repertoire in ME/CFS
Sato, Ono, Matsutani, Nakamura, Shin, Amano, Suzuki & Yamamura
(Japan) - ICC, CCC and Fukuda - Conclusion: "... we revealed a biased usage of several IGHV genes in peripheral blood B cells from ME/CFS patients. Results of receiver operating characteristic (ROC) analysis further indicated a possibility of distinguishing patients from healthy controls, based on the skewed B cell repertoire." - 27 March 21
Sato, Ono, Matsutani, Nakamura, Shin, Amano, Suzuki & Yamamura
(Japan) - ICC, CCC and Fukuda - Conclusion: "... we revealed a biased usage of several IGHV genes in peripheral blood B cells from ME/CFS patients. Results of receiver operating characteristic (ROC) analysis further indicated a possibility of distinguishing patients from healthy controls, based on the skewed B cell repertoire." - 27 March 21
Open-label study with the monoamine stabilizer (-)-OSU6162 in ME/CFS
Haghighi, Forsmark, Zachrisson, Carlsson, Nilsson, Carlsson, Schuit & Gottfries
(Sweden, The Netherlands) - ICC and Fukuda - Conclusion: "(‐)‐OSU6162 is well tolerated in ME/CFS patients and shows promise as a novel treatment to mitigate fatigue and improve mood and health‐related quality of life in ME/CFS. Obviously, the present results need to be confirmed in future placebo‐controlled double‐blind trials." - 02 February 21
Haghighi, Forsmark, Zachrisson, Carlsson, Nilsson, Carlsson, Schuit & Gottfries
(Sweden, The Netherlands) - ICC and Fukuda - Conclusion: "(‐)‐OSU6162 is well tolerated in ME/CFS patients and shows promise as a novel treatment to mitigate fatigue and improve mood and health‐related quality of life in ME/CFS. Obviously, the present results need to be confirmed in future placebo‐controlled double‐blind trials." - 02 February 21
2020
Deep phenotyping of myalgic encephalomyelitis/chronic fatigue syndrome in Japanese population
Kitami, Fukuda, Kato, Yamaguti, Nakatomi, Yamano, Kataoka, Mizuno, Tsuboi, Kogo, Suzuki, Itoh, Morioka, Kawaji, Koseki, Kikuchi, Hayashizaki, Ohno, Kuratsune & Watanabe (Japan) - ICC and Fukuda - Conclusion: "Our study points to a cluster of sleep-related molecular changes as a prominent feature of ME/CFS in our Japanese cohort." - 16 November 20
The Economic Impacts of ME/CFS in an Australian Cohort
Close, Marshall-Gradisnik, Byrnes, Smith, Nghiem and Stains (Australia) - Conclusion: The economic impacts of ME/CFS in Australia are significant. Improved understanding of the illness pathology, diagnosis, and management, may reduce costs, improve patient prognosis and decrease the burden of ME/CFS in Australia. - 21 August 20
Close, Marshall-Gradisnik, Byrnes, Smith, Nghiem and Stains (Australia) - Conclusion: The economic impacts of ME/CFS in Australia are significant. Improved understanding of the illness pathology, diagnosis, and management, may reduce costs, improve patient prognosis and decrease the burden of ME/CFS in Australia. - 21 August 20
Validation of the Severity of ME/CFS by Other Measures than History: Activity Bracelet, Cardiopulmonary Exercise Testing and a Validated Activity Questionnaire: SF-36
van Campen, Rowe and Visser (Netherlands, USA) - This study confirms the validity of the ICC severity grading. - 14 August 20
van Campen, Rowe and Visser (Netherlands, USA) - This study confirms the validity of the ICC severity grading. - 14 August 20
Review of case definitions for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Lim and Son (Republic of Korea) - "...ME/CFS has been named differently (e.g., postviral fatigue syndrome, neurasthenia) depending on the perspectives of the researchers; likewise, diagnostic criteria or case definitions have also been changed accordingly." Conclusions: "In this review, we found three key factors that have affected ME/CFS case definitions: etiology, pathophysiology, and exclusionary disorders. These factors have impacted the specification of the main symptoms, required conditions, and range of inclusive and exclusive symptoms/disorders in the development of case definitions." - 29 July 20
Lim and Son (Republic of Korea) - "...ME/CFS has been named differently (e.g., postviral fatigue syndrome, neurasthenia) depending on the perspectives of the researchers; likewise, diagnostic criteria or case definitions have also been changed accordingly." Conclusions: "In this review, we found three key factors that have affected ME/CFS case definitions: etiology, pathophysiology, and exclusionary disorders. These factors have impacted the specification of the main symptoms, required conditions, and range of inclusive and exclusive symptoms/disorders in the development of case definitions." - 29 July 20
Altered Structural Brain Networks Related to Adrenergic/Muscarinic Receptor Autoantibodies in CFS
Fujii, Sato, Kimura, Matsuda, Ota, Maikusa, Suzuki, Amano, Shin, Yamamura, Mori and Sato (Japan) - Conclusion: "Our findings suggest that β1 AdR‐Ab and β2 AdR‐Ab are potential markers of ME/CFS." - 01 July 20
Fujii, Sato, Kimura, Matsuda, Ota, Maikusa, Suzuki, Amano, Shin, Yamamura, Mori and Sato (Japan) - Conclusion: "Our findings suggest that β1 AdR‐Ab and β2 AdR‐Ab are potential markers of ME/CFS." - 01 July 20
Cognitive Function Declines Following Orthostatic Stress in Adults With ME/CFS
van Campen, Rowe, Verheught and Visser (Netherlands, USA) - Conclusion: "As measured by the N-back test, working memory remains impaired in adults with ME/CFS following a 30-min head-up tilt test." - 26 June 20
van Campen, Rowe, Verheught and Visser (Netherlands, USA) - Conclusion: "As measured by the N-back test, working memory remains impaired in adults with ME/CFS following a 30-min head-up tilt test." - 26 June 20
Epidemiological and Clinical Factors Associated With Post-Exertional Malaise Severity in Patients With ME/CFS
Ghali, Richa, Lacout, Gury, Beucher, Homedan, Lavigne and Urbanski (France) - Conclusion: "We identified some epidemiological and clinical features, which were positively associated with PEM severity in subsets of ME/CFS patients. This could help improving disease management and patients' quality of life." - 22 June 20
Ghali, Richa, Lacout, Gury, Beucher, Homedan, Lavigne and Urbanski (France) - Conclusion: "We identified some epidemiological and clinical features, which were positively associated with PEM severity in subsets of ME/CFS patients. This could help improving disease management and patients' quality of life." - 22 June 20
Cerebral Blood Flow Is Reduced in Severe ME/CFS Patients During Mild Orthostatic Stress Testing: An Exploratory Study at 20 Degrees of Head-Up Tilt Testing
van Campen, Rowe and Visser (Netherlands, USA) - Conclusions: "Using a less demanding 20 degree tilt test for 15 min in severe ME/CFS patients resulted in a mean CBF decline of 27%. This is comparable to the mean 26% decline previously noted in less severely affected patients studied during a 30-min 70 degree head-up tilt. These observations have implications for the evaluation and treatment of severely affected individuals with ME/CFS." - 13 June 20
van Campen, Rowe and Visser (Netherlands, USA) - Conclusions: "Using a less demanding 20 degree tilt test for 15 min in severe ME/CFS patients resulted in a mean CBF decline of 27%. This is comparable to the mean 26% decline previously noted in less severely affected patients studied during a 30-min 70 degree head-up tilt. These observations have implications for the evaluation and treatment of severely affected individuals with ME/CFS." - 13 June 20
A Unifying Hypothesis of the Pathophysiology of ME/CFS: Recognitions from the finding of autoantibodies against ß2-adrenergic receptors
Wirth and Scheibenbogen (Germany) - This is a compilation of many studies. While studies in this report may have used various criteria, the only criteria cited is the ICC. - 01 April 20
2019
Elevated blood lactate in resting conditions correlate with post-exertional malaise severity in patients with ME/CFS
Ghali, Lacout, Ghali, Gury, Beucher, Lozac’h, Lavigne and Urbanski (France) -
11 December 19
Reduced glycolytic reserve in isolated natural killer cells from ME/CFS patients: A preliminary investigation
Nguyen, Staines, Johnston and Marshall-Gradisnik (Australia) - June 2019
Diagnostic sensitivity of 2-day cardiopulmonary exercise testing in ME/CFS
Nelson, Buckley, Thomson, Clark, Kwiatek and Davison (Australia) - 14 March 19
2018
Blood Volume Status in ME/CFS Correlates With the Presence or Absence of Orthostatic Symptoms: Preliminary Results
M.C. van Campen, Rowe and Visser (Netherlands, USA) - 15 November 18
Transient Receptor Potential Ion Channels in the Etiology and Pathomechanism of CFS/ME
Staines, Du Preez, Cabanas, Balinas, Eaton, Passmore, Maksoud, Redmayne and Marshall-Gradisnik (Australia) - 22 May 18
The etiologic relation between disequilibrium and orthostatic intolerance in patients with ME (CFS)
Miwa and Inoue (Japan) - 26 March 18
2017
Novel characterisation of mast cell phenotypes from peripheral blood mononuclear cells in CFS/ME patients
Nguyen, Johnston, Chacko, Gibson, Cepon, Smith, Staines and Marshall-Gradisnik (Australia) - Conclusions: "This preliminary study investigates mast cell phenotypes from PBMCs in healthy controls. We report significant increase of naïve MCs in moderate and severe CFS/ME patients compared with healthy controls. Moreover, a significant increase in CD40 ligand and MHC-II receptors on differentiated mast cells in severe CFS/ME patients. Peripheral MCs may be present in CFS/ME pathology however, further investigation to determine their role is required."
2016
Autonomic correlations with MRI are abnormal in the brainstem vasomotor centre in CFS
Barndena, Kwiatekc, Croucha, Burnet and Del Fante (Australia)
A Preliminary Comparative Assessment of the Role of CD8+ T Cells in CFS/ME and MS
Brenu, Broadley, Nguyen, Johnston, Ramos, Staines and Marshall-Gradisnik (Australia) - 04 January 16
Epidemiological characteristics of CFS/ME in Australian patients
Johnston, Staines and Marshall-Gradisnik (Australia) - 17 May 16
Dysregulation of Protein Kinase Gene Expression in NK Cells from CFS/ME Patients
Chacko, Staines, Johnston and Marshall-Gradisnik (Australia) - 28 August 16
2015
Pilot Study of Natural Killer Cells in CFS/ME and Multiple Sclerosis
Huth, Brenu, Ramos, Nguyen, Broadley, Staines and Marshall‐Gradisnik (Australia) - 18 September 15
A Comparison of Cytokine Profiles of CFS/ME and Multiple Sclerosis Patients
Wong, Nguyen, Brenu, Broadley, Staines and Marshall-Gradisnik (Australia) - 29 October 15
Antibodies to β adrenergic and muscarinic cholinergic receptors in patients with CFS
Loebel, Grabowski, Heidecke, Bauer, Hanitsch, Wittke, Meisel, Reinke, Volk, Fluge, Mella and Scheibenbogen (Germany, Norway) Results: "We found significantly higher autoantibody levels against M3 and M4 AChR and β2 AdR in CFS patients compared to controls. Crossreactivity between all 5 M and β1 and β2 AdR but also between M and β receptor was seen in a substantial portion of CFS patients as shown for M4 in Fig. 1C. The highest correlation was found between M3 and M4 receptor antibodies (r = 0.87), the lowest for M1 and M4 receptor antibodies (r = 0.59)." - 19 September 15
2014
Neuroinflammation in Patients with CFS/ME: An ¹¹C-(R)-PK11195 PET Study
Nakatomi, Mizuno, Wada, Tanaka, Tazawa, Onoe, Fukuda, Kawabe, Takahashi, Kataoka, Shiomi, Yamaguti, Inaba, Kuratsune and Watanabe (Japan) - 24 March 14
2013
Immune Abnormalities in Patients Meeting New Diagnostic Criteria for CFS/ME
Brenu, Johnston, Hardcastle, Huth, Fuller, Ramos, Staines and Marshall-Gradisnik (Australia) - 14 November 13
*Note: Some studies included patients who fit additional criteria as well as ICC.
RESEARCH USING CCC AND/OR CITING THE ICC
Some studies cited additional criteria as well as ICC
2020
A SWATH-MS analysis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome peripheral blood mononuclear cell proteomes reveals mitochondrial dysfunction Patient selection - CCC
Sweetman, Kleffmann, Edgar, de Lange, Vallings and Tate (New Zealand) - 24 September 20
Sweetman, Kleffmann, Edgar, de Lange, Vallings and Tate (New Zealand) - 24 September 20
A systematic review of neurological impairments in myalgic encephalomyelitis/ chronic fatigue syndrome using neuroimaging techniques Patient selection - CCC
Maksoud, du Preez, Eaton-Fitch, Thapaliya, Barnden, Cabanas, Staines, and Marshall-Gradisnik (Australia) - 30 April 20
Maksoud, du Preez, Eaton-Fitch, Thapaliya, Barnden, Cabanas, Staines, and Marshall-Gradisnik (Australia) - 30 April 20
Intravenous Cyclophosphamide in ME/CFS. An Open-Label Phase II Study Patient selection - CCC
Rekeland, Fosså, Lande, Ktoridou-Valen, Sørland, Holsen, Tronstad, Risa, Alme, Viken, Lie, Dahl, Mella and Fluge (Norway) - 29 April 20
Rekeland, Fosså, Lande, Ktoridou-Valen, Sørland, Holsen, Tronstad, Risa, Alme, Viken, Lie, Dahl, Mella and Fluge (Norway) - 29 April 20
The effect of ME/CFS severity on cellular bioenergetic function
Patient selection - Fukuda & CCC
Thomas, Elson, Straasheim, Newton and Walker (UK, USA) - 10 April 20
Patient selection - Fukuda & CCC
Thomas, Elson, Straasheim, Newton and Walker (UK, USA) - 10 April 20
Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in ME/CFS
Patient selection - CCC
Schreiner, Harrer, Scheibenbogen, Lamer, Schlosser, Naviaux and Prusty (Germany, USA) - 01 April 20
Patient selection - CCC
Schreiner, Harrer, Scheibenbogen, Lamer, Schlosser, Naviaux and Prusty (Germany, USA) - 01 April 20
Assessing diagnostic value of microRNAs from peripheral blood mononuclear cells and extracellular vesicles in ME/CFS Patient selection - Fukuda & CCC - severely ill
Almenar-Pérez, Sarría, Nathanson & Oltra (Spain, USA) - 07 February 20
Almenar-Pérez, Sarría, Nathanson & Oltra (Spain, USA) - 07 February 20
An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS Patients Patient selection - CCC
Missailidis, Annesley, Allan, Sanislav, Lidbury, Lewis, and Fisher (Australia) - 06 February 20
Missailidis, Annesley, Allan, Sanislav, Lidbury, Lewis, and Fisher (Australia) - 06 February 20
Cell-Based Blood Biomarkers for ME/CFS Patient selection - CCC
Missailidis, Sanislav, Allan, Annesley and Fisher (Australia) - 03 February 20
Missailidis, Sanislav, Allan, Annesley and Fisher (Australia) - 03 February 20
2019
Transient receptor potential melastatin 2 channels are overexpressed in ME/CFS patients Patient selection - not stated
Balinas, Cabanas, Staines and Marshall-Gradisnik
Abnormal blood lactate accumulation during repeated exercise testing in ME/CFS Patient selection - CCC
Lien, Johansen, Veierød, Haslestad, Bøhn, Melsom, Kardel and Iversen
2018
Evaluation of four clinical laboratory parameters for the diagnosis of ME
Patient selection - CCC
De Meirleir, Mijatovic, Subramanian, Schlauch and Lombardi
Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from CFS/ME patients Patient selection - CCC
Cabanas, Muraki, Eaton, Balinas, Staines and Marshall-Gradisnik
Immunoadsorption to remove ß2 adrenergic receptor antibodies in CFS/ME Patient selection - CCC
Scheibenbogen, Loebel, Freitag, Krueger, Bauer, Antelmann, Doehner, Scherbakov, Heidecke, Reinke, Volk and Grabowski
2017
Exercise – induced changes in cerebrospinal fluid miRNAs in Gulf War Illness, CFS and sedentary control subjects Patient selection -
Baraniuk and Shivapurkar
Cytokine signature associated with disease severity in CFS patients
Patient selection -
Montoya, Holmes, Anderson, Maecker, Rosenberg-Hasson, Valencia, Chu, Younger, Tato and Davis
2016
Impaired calcium mobilization in natural killer cells from CFS/ME patients is associated with transient receptor potential melastatin 3 ion channels
Patient selection -
Nguyen, Johnston, Clarke, Smith, Staines and Marshall-Gradisnik
Extended B cell phenotype in patients with ME/CFS: a cross-sectional study
Patient selection -
Mensah, Bansal, Berkovitz, Sharma, Reddy, Leandro and Cambridge
2015
Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in CFS patients Patient selection -
Armstrong, McGregor, Lewis, Butt and Gooley
Characterisation of cell functions and receptors in CFS/ME Patient selection -
Hardcastle, Brenu, Johnston, Nguyen, Huth, Wong, Ramos, Staines and Marshall-Gradisnik
2014
Evidence in CFS for severity-dependent upregulation of prefrontal myelination that is independent of anxiety and depression Patient selection -
Barnden, Crouch, Kwiatek, Burnet and Del Fante
Oxidative and Nitrosative Stress and Immune-Inflammatory Pathways in Patients with ME/CFS Patient selection -
Morris and Maes
Mitochondrial dysfunctions in ME/CFS explained by activated immuno-inflammatory, oxidative and nitrosative stress pathways Patient selection -
Morris and Maes
2013
Discriminative Validity of Metabolic and Workload Measurements for identifying Individuals with CFS Patient selection -
Snell, Stevens, Davenport and Van Ness
