Leading research into ME/CFS

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Research Round-up: our work over the last year

As ME Awareness Week draws to a close, we’d like to round up some of our research work over the past year. Our published research is found in a number of different journals, but you can always find all of our peer-reviewed publications on our website.

Our team has diverse expertise in clinical research, epidemiology, biobanking and laboratory science, but a key focus of our work has always been ME/CFS in clinical practice. Our Director Dr Luis Nacul’s editorial on clinical practice in ME/CFS (1) was published in October 2019, and Luis and Caroline continue to contribute to the NICE review of national guidelines for ME/CFS, Clinical practice around Europe was also reviewed by members of the EUROMENE network (2).

Other clinical analyses include of risk factors in ME/CFS pathogenesis (3), and of levels of serum creatine kinase in the blood of people with ME, which could provide a potential marker of severe ME/CFS (4). Further clinical analysis on the pathophysiology of ME/CFS is available in preprint (5).

Analysis of blood serum (6) was also conducted with Professor Sir Stephen O’Rahilly FRS, looking specifically at circulating GDF15, which appeared higher in participants with severe ME/CFS.

Laboratory science at LSHTM

Prof O’Rahilly has been one user of the UK ME/CFS Biobank, and we continue to publish in collaboration with other Biobank users, including Dr Camila Romano, whose work focuses on endogenous retroviruses (7).

Laboratory studies also continued at LSHTM, with many of the significant findings of our first NIH grant (2013-2017) included in Dr Jackie Cliff’s paper on cellular immune function (8). T Cell function was also discussed in Dr Nuno Sepúlveda’s paper, which offered a new model for the possible function of ME/CFS within the body (9). A lay summary and interview is available courtesy of Cort Johnson and Simmaron Research. Laboratory studies in development include on transcriptomics, and on metabolomics with Dr Jo Cambridge, as kindly funded by the ME Association.

We continue to await the outcome of our application to the Medical Research Council and National Institute for Health Research, led by Prof Chris Ponting. This proposes a Genome-Wide Association Study for ME/CFS, and our review of quality control checks in genome-wide and targeted-genome association studies is awaiting publication (10).

A key feature of the partnership application has been the central involvement of patients, including from our Steering Group, and participatory work continues to be at the heart of our work. Our qualitative focus group study from early 2019 (11) was one of the top downloaded papers in Wiley Online.

[PS: While not related to ME/CFS, we were thrilled that our Research Assistant Shennae O’Boyle’s paper on malaria, from her Master’s work, was published with some notable co-authors, including Chief Medical Officer Prof Chris Whitty! (12)]

You can always find out more about our current work from our Facebook and Twitter pages. Despite the challenges of the moment, we hope that 2020 will be as successful as 2019. If you’d like to support our research, you can donate via our website.


  1. Friedberg, F. ; Sunnquist, M. ; Nacul, . ; Rethinking the Standard of Care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. JOURNAL OF GENERAL INTERNAL MEDICINE, (2019).35 (3), DOI: 10.1007/s11606-019-05375-y. (Editorial)
  2. Strand, Elin B; Nacul, Luis; Mengshoel, Anne Marit; Helland, Ingrid B; Grabowski, Patricia; Krumina, Angelika; Alegre-Martin, Jose; Efrim-Budisteanu, Magdalena; Sekulic, Slobodan; Pheby, Derek; +4 more… (2019) Myalgic encephalomyelitis/chronic fatigue Syndrome (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union. PloS one, 14 (12). e0225995-. ISSN 1932-6203 DOI: https://doi.org/10.1371/journal.pone.0225995
  3. Lacerda, Eliana M; Geraghty, Keith; Kingdon, Caroline C; Palla, Luigi; Nacul, Luis; (2019) A logistic regression analysis of risk factors in ME/CFS pathogenesis. BMC neurology, 19 (1). 275-. ISSN 1471-2377 DOI: https://doi.org/10.1186/s12883-019-1468-2
  4. Nacul, Luis; de Barros, Barbara; Kingdon, Caroline C; Cliff, Jacqueline M; Clark, Taane G; Mudie, Kathleen; Dockrell, Hazel M; Lacerda, Eliana M; (2019) Evidence of Clinical Pathology Abnormalities in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) from an Analytic Cross-Sectional Study. Diagnostics (Basel, Switzerland), 9 (2). p. 41. ISSN 2075-4418 DOI: https://doi.org/10.3390/diagnostics9020041
  5. Nacul, L.; O’Boyle, S.; Nacul, F.E.; Mudie, K.; Kingdon, C.C.; Cliff, J.M.; Clark, T.G.; Dockrell, H.M.; Lacerda, E.M. How Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) Progresses: A Framework for Research and the Prevention, Treatment, and Rehabilitation in ME/CFS. Preprints 2019, 2019090188 DOI: https://doi.org/10.20944/preprints201909.0188.v1
  6. Melvin, A; Lacerda, E; Dockrell, HM; O’Rahilly, S; Nacul, L; (2019) Circulating levels of GDF15 in patients with myalgic encephalomyelitis/chronic fatigue syndrome. Journal of translational medicine, 17 (1). 409-. ISSN 1479-5876 DOI: https://doi.org/10.1186/s12967-019-02153-6
  7. Rodrigues, Lucas S; da Silva Nali, Luiz H; Leal, Cibele OD; Sabino, Ester C; Lacerda, Eliana M; Kingdon, Caroline C; Nacul, Luis; Romano, Camila M; (2019) HERV-K and HERV-W transcriptional activity in myalgic encephalomyelitis/chronic fatigue syndrome. Autoimmunity Highlights, 10 (1). 12-. ISSN 2038-0305 DOI: https://doi.org/10.1186/s13317-019-0122-8
  8. Cliff, Jacqueline M; King, Elizabeth C; Lee, Ji-Sook; Sepúlveda, Nuno; Wolf, Asia-Sophia; Kingdon, Caroline; Bowman, Erinna; Dockrell, Hazel M; Nacul, Luis; Lacerda, Eliana; +1 more… (2019) Cellular Immune Function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Frontiers in Immunology, 10 (MAR). 796-. DOI: https://doi.org/10.3389/fimmu.2019.00796
  9. Sepúlveda, Nuno; Carneiro, Jorge; Lacerda, Eliana; Nacul, Luis; (2019) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a Hyper-Regulated Immune System Driven by an Interplay Between Regulatory T Cells and Chronic Human Herpesvirus Infections. Frontiers in Immunology, 10. 2684-. ISSN 1664-3224 DOI: https://doi.org/10.3389/fimmu.2019.02684
  10. Sepúlveda, Nuno; Grabowska, Anna D.; Lacerda, Eliana; Nacul, Luis; (2020) Review of the Quality Control Checks Performed by Current Genome-Wide and Targeted-Genome Association Studies on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Frontiers in Pediatrics. DOI: https://doi.org/10.3389/fped.2020.00293
  11. Lacerda, Eliana M; McDermott, Clare; Kingdon, Caroline C; Butterworth, Jack; Cliff, Jacqueline M; Nacul, Luis; (2019) Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study. Health expectations. ISSN 1369-7625 DOI: https://doi.org/10.1111/hex.12857
  12. O’Boyle, Shennae; Bruxvoort, Katia J; Ansah, Evelyn K; Burchett, Helen ED; Chandler, Clare IR; Clarke, Siân E; Goodman, Catherine; Mbacham, Wilfred; Mbonye, Anthony K; Onwujekwe, Obinna E; +4 more… (2020) Patients with positive malaria tests not given artemisinin-based combination therapies: a research synthesis describing under-prescription of antimalarial medicines in Africa. BMC medicine, 18 (1). 17-. ISSN 1741-7015 DOI: https://doi.org/10.1186/s12916-019-1483-6