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Complex Chronic Diseases Research

The Complex Chronic Disease Program (CCDP) is a leader in providing inter-professional care to patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia, and Symptoms of Chronic Lyme Disease.
Our Publications

Kingdon, C.C.; Lowe, A.; Shepherd, C.; Nacul, L. What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults . Preprints 2022, 2022110016 (doi: 10.20944/preprints202211.0016.v1). 

Fatigue presentation, severity, and related outcomes 12 weeks post-COVID-19 hospitalization

Magel, T., Meagher, E., Boulter, T., Albert, A., Tsai, M., Munoz, C., Carlsten, C., Johnston, J., Wong, A., Shah, A., Ryerson, C., McKay, R. J., & Nacul, L. (2022). Fatigue presentation, severity, and related outcomes 12 weeks post-covid-19 hospitalization. https://doi.org/10.1101/2022.10.18.22280199 

Post-viral fatigue following SARS-CoV-2 infection during pregnancy: a longitudinal comparative study

Ana Maria da Silva Sousa Oliveira, Mariana Azevedo Carvalho, Luis Nacul et al. Post-viral fatigue following SARS-CoV-2 infection during pregnancy: a longitudinal comparative study, 22 June 2022, PREPRINT (Version 1) available at Research Square [https://doi.org/10.21203/rs.3.rs-1629974/v1]


Tami, B.T.F. van der Gun, K.I. Wold, M.F. Vincenti-González, A… Nacul, H.G.M. Niesters, A.W. Friedrich. The COVID HOME study research protocol: Prospective cohort study of non-hospitalised COVID-19 patients medRxiv 2022.08.14.22278762; doi: https://doi.org/10.1101/2022.08.14.2227876


O'Boyle, S., Nacul, L., Nacul, F. E., Mudie, K., Kingdon, C. C., Cliff, J. M., Clark, T. G., Dockrell, H. M., & Lacerda, E. M. (2022, January 28). A natural history of disease framework for improving the Prevention, management, and research on post-viral fatigue syndrome and other forms of myalgic encephalomyelitis/chronic fatigue syndrome. Frontiers in medicine. Retrieved March 31, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8835111/ 

Incidence of Lyme disease in the United Kingdom and association with fatigue: A population-based, historical cohort study

Brellier, F., Pujades-Rodriguez, M., Powell, E., Mudie, K., Mattos Lacerda, E., Nacul, L., & Wing, K. (2022). Incidence of lyme disease in the United Kingdom and association with fatigue: A population-based, historical cohort study. PLOS ONE, 17(3). https://doi.org/10.1371/journal.pone.0265765 

Systematic review and meta-analysis of cognitive impairment in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Aoun Sebaiti, M., Hainselin, M., Gounden, Y. et al. Systematic review and meta-analysis of cognitive impairment in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Sci Rep 12, 2157 (2022). https://doi.org/10.1038/s41598-021-04764-w

Expert consuses on the diagnosis, service provisions and care for people with ME/CFS in Europe

Nacul L, Authier FJ, Scheibenbogen C, Lorusso L, Helland IB, Martin JA, Sirbu CA, Mengshoel AM, Polo O, Behrends U, Nielsen H, Grabowski P, Sekulic S, Sepulveda N, Estévez-López F, Zalewski P, Pheby DFH, Castro-Marrero J, Sakkas GK, Capelli E, Brundsdlund I, Cullinan J, Krumina A, Bergquist J, Murovska M, Vermuelen RCW, Lacerda EM. European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe. Medicina (Kaunas). 2021 May 19;57(5):510. doi: 10.3390/medicina57050510. PMID: 34069603; PMCID: PMC8161074.

Herpesviruses serology distinguishes different subgroups of patients from the UK ME/CFS biobank

Tiago Dias Domingues , Anna Daria Grabowska , Ji-Sook Lee , Jose Ameijeiras-Alonso , Francisco Westermeier , Carmen Scheibenbogen , Jacqueline Margaret Cliff , Luis Carlos Nacul , Eliana Mattos Lacerda , Helena Mourino and Nuno Sepulveda; Herpesviruses serology distinguishes different subgroups of patients from the United Kingdom Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Biobank. Front. Med (accepted June 2021) doi: 10.3389/fm ed.2021.686736

Salivary DNA loads for human Herpes virus 6 and 7 are correlated with disease phenotype in ME/CFS

Ji-Sook Lee, Eliana M Lacerda, Luis Nacul, Caroline C Kingdon, Jasmin Norris, Shennae O'Boyle, Chrissy h Roberts, Luigi Palla, Eleanor M Riley, Jacqueline M Cliff. Salivary DNA loads for human herpes viruses 6 and 7 are correlated with disease phenotype in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. Frontiers in Medicine (accepted June 2021).

The SARVS-CoV2 receptor angiotensin-converting enzyme 2 (ACE2) in ME/CFS: analysis of high-throughput genetic, epigenetic, and gene expression studies 

Malato J, Sotzny F, Bauer S, Freitag H, Fonseca A, Grabowska AD, Graça L, Cordeiro C, Nacul L, Lacerda EM, Castro-Marrero J, Scheibenbogen C, Westermeier F, Sepúlveda.The SARS-CoV-2 receptor angiotensin-converting enzyme 2 (ACE2) in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: analysis of high-throughput genetic, epigenetic, and gene expression studies. medRxiv [Preprint]. 2021 Mar 24:2021.03.23.21254175. doi: 10.1101/2021.03.23.21254175. PMID: 33791744; PMCID: PMC8010776

How ME/CFS progresses: The natural history of ME/CFS

Nacul L, O'Boyle S, Palla L, Nacul FE, Mudie K, Kingdon CC, Cliff JM, Clark TG, Dockrell HM, Lacerda EM. How Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Progresses: The Natural History of ME/CFS. Front Neurol. 2020 Aug 11;11:826. doi: 10.3389/fneur.2020.00826. PMID: 32849252; PMCID: PMC7431524.

Review of the quality control checks performed by current genome-wide and targeted-genome associated studies on ME/CFS

Grabowska AD, Lacerda EM, Nacul L, Sepúlveda N. Review of the Quality Control Checks Performed by Current Genome-Wide and Targeted-Genome Association Studies on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Front Pediatr. 2020 Jun 12;8:293. doi: 10.3389/fped.2020.00293. PMID: 32596192; PMCID: PMC7304330.

Health care responsibility and compassion - visiting the housbound patient serverely affected by ME/CFS

Kingdon C, Giotas D, Nacul L, Lacerda E. Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS. Healthcare (Basel). 2020 Jul 4;8(3):197. doi: 10.3390/healthcare8030197. PMID: 32635535; PMCID: PMC7551603

Systematic review of the epidemiological burden of ME/CFS across
Europe

Estévez-López F, Mudie K, Wang-Steverding X, Bakken IJ, Ivanovs A, Castro-Marrero J, Nacul L, Alegre J, Zalewski P, Słomko J, Strand EB, Pheby D, Shikova E, Lorusso L, Capelli E, Sekulic S, Scheibenbogen C, Sepúlveda N, Murovska M, Lacerda E. Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology. J Clin Med. 2020 May 21;9(5):1557. doi: 10.3390/jcm9051557. PMID: 32455633; PMCID: PMC7290765

Our Studies

Our current reasearch project is the CCDP Data Registry. A data registry is a repository (bank) of information that is intended to be accessed to use in future research over an extended period of time. The Data Registry team is currently enrolling patients who are new to the CCDP.

In order to generate a better understanding of these debilitating conditions that data registry aims to:

a) Better characterize the patient population of the CCDP and
b) Assess CCDP patients' outcomes over time

Participation is voluntary and greatly appreciated.

Principal Investigator: Dr. Luis Nacul

Post-Viral Fatigue

Post-Viral Fatigue Resources

Welcome to the post-viral fatigue resource series. We hope that this series of resources will provide some support to you on your health journey. In order to help organize all of the content that we cover, we have developed a framework to help guide you. 

Each one of these sections will explore a different aspect of managing post-viral fatigue. You may be familiar with some of the ideas or they may be completely new to you. In either case, be sure to pick out the tips and strategies that apply to your experience. We’ve created a ‘Glossary’ to clarify concepts or terms that are covered in the material. Explore the handouts and resources at your own pace and try out some new ideas. 

P - Plan Your Energy

Become familiar with energy types and how to describe energy levels.
Understand energy limits and learn to determine when limits are pushed.
Learn strategies to pace and stay within energy limits.
Recognize use of cognitive or mental energy and learn strategies to manage brain fog.

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A - Adapt the environment and activity

Learn how to best support the body in the environment and during activity.
Apply principles of safe physical activity to promote the benefits of movement.
Learn how to manage orthostatic intolerance and other barriers to physical activity.  

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C - Coping and resiliency

Build confidence to advocate for your health needs (physical and emotional).
Learn how to calm the nervous system to be able to relax and break stress cycles.
Gain tools to manage relationships and expectations while dealing with post-viral fatigue.

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E - Engage with community 

Become familiar with available financial supports and subsidies. 
Learn about community supports to care for mental health and overall wellbeing.

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