CureME

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CureME is a British research group at the London School of Hygiene and Tropical Medicine (LSHTM), undertaking clinical and biomedical research into ME/CFS. The team is led by Luis Nacul.[1]

Overview[edit | edit source]

The group conducts clinical, epidemiological and laboratory research into ME/CFS, and is comprised of a clinical team led by Luis Nacul and Eliana Lacerda and a laboratory team led by Hazel Dockrell and Jacqueline Cliff.[2]

The group is midway through an eight-year major study into ME/CFS funded by the National Institutes of Health, which is seeking to create results through integrated desk and laboratory research, over an extended timespan and using a large number of participants.[3]

The team is overseen by a Steering Committee that includes researchers, partner charities and patient/carer representatives.

The UK ME/CFS Biobank[edit | edit source]

In August 2011, the team founded a biobank, hosted by the University College London Biobank at the Royal Free Hospital.[4][5] The Biobank was initially funded with support from ME Research UK, the ME Association and Action for ME as well as private donors.[4] Ongoing funding has been provided by the ME Association and the US National Institutes of Health.[6][7]

The Biobank holds over 30,000 aliquots of blood from people with ME, MS and healthy controls, with accompanying clinical data.[8] In 2016 the Biobank's samples were made available to researchers around the world, and any researcher can apply to use samples and/or clinical data, subject to application approval and ethical clearance.[9]

Notable people[edit | edit source]

As of January 2019, the members of the group include:[10]

Notable studies[edit | edit source]

  • 2011, Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care[11]
  • 2011, Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis[12]
  • 2014, Considerations in establishing a post-mortem brain and tissue bank for the study of myalgic encephalomyelitis/chronic fatigue syndrome: a proposed protocol[13]
  • 2017, How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?[14]
  • 2017, Differing case definitions point to the need for an accurate diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome[15]
  • 2017, Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS[16]
  • 2017, The UK ME/CFS Biobank for biomedical research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis[17]
  • 2017, The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE[18]
  • 2017, Using a participatory approach to develop and implement the UK ME/CFS Biobank[19]
  • 2018, Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls[20]
  • 2018, 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[21]
  • 2018, The UK ME/CFS Biobank: A Disease-Specific Biobank for Advancing Clinical Research Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome[22](Full text)
  • 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.[23]
  • 2019, Cellular Immune Function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)[24] - (Full text)

Talks and interviews[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. http://cureme.lshtm.ac.uk/
  2. https://cureme.lshtm.ac.uk/about-us/cureme-team/
  3. https://cureme.lshtm.ac.uk/our-studies/
  4. 4.04.1 "History of CureME". CureMe. Retrieved Jan 18, 2019. 
  5. Action for M.E. AGM 2013 part three
  6. UK ME/CFS Biobank project awarded £1 million grant
  7. Current Research 2015
  8. "Samples & Data". CureMe. Retrieved Jan 18, 2019. 
  9. https://cureme.lshtm.ac.uk/researchers/accessing-the-biobank/
  10. "People". CureMe. Retrieved Jan 18, 2019. 
  11. Nacul, Luis C.; Lacerda, Eliana M.; Pheby, Derek; Campion, Peter; Molokhia, Mariam; Fayyaz, Shagufta; Leite, Jose CDC; Poland, Fiona; Howe, Amanda (Jul 28, 2011). "Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care". BMC Medicine. 9 (1): 91. doi:10.1186/1741-7015-9-91. ISSN 1741-7015. PMC 3170215Freely accessible. PMID 21794183. 
  12. de Carvalho Leite, Jose C.; de L Drachler, Maria; Killett, Anne; Kale, Swati; Nacul, Luis; McArthur, Maggie; Hong, Chia Swee; O'Driscoll, Lucy; Pheby, Derek (Nov 2, 2011). "Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis". International Journal for Equity in Health. 10 (1): 46. doi:10.1186/1475-9276-10-46. ISSN 1475-9276. PMC 3229491Freely accessible. PMID 22044797. 
  13. Nacul, Luis; O’Donovan, Dominic G.; Lacerda, Eliana M.; Gveric, Djordje; Goldring, Kirstin; Hall, Alison; Bowman, Erinna; Pheby, Derek (Jun 18, 2014). "Considerations in establishing a post-mortem brain and tissue bank for the study of myalgic encephalomyelitis/chronic fatigue syndrome: a proposed protocol". BMC Research Notes. 7 (1): 370. doi:10.1186/1756-0500-7-370. ISSN 1756-0500. PMC 4076507Freely accessible. PMID 24938650. 
  14. Nacul, Luis; Lacerda, Eliana M.; Kingdon, Caroline C.; Curran, Hayley; Bowman, Erinna W. (Mar 1, 2017). "How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?". Journal of Health Psychology: 1359105317695803. doi:10.1177/1359105317695803. ISSN 1461-7277. PMC 5581258Freely accessible. PMID 28810428. 
  15. Nacul, Luis; Kingdon, Caroline C.; Bowman, Erinna W.; Curran, Hayley; Lacerda, Eliana M. (2017). "Differing case definitions point to the need for an accurate diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome". Fatigue: Biomedicine, Health & Behavior. 5 (1): 1–4. doi:10.1080/21641846.2017.1273863. ISSN 2164-1846. PMC 5730342Freely accessible. PMID 29250461. 
  16. Jain, Vageesh; Arunkumar, Amit; Kingdon, Caroline; Lacerda, Eliana; Nacul, Luis (Jun 20, 2017). "Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS". BMC Neurology. 17 (1): 117. doi:10.1186/s12883-017-0896-0. ISSN 1471-2377. PMC 5477754Freely accessible. PMID 28633629. 
  17. Nacul, Luis; Curran, Hayley; Riley, Eleanor; Dockrell, Hazel; Clark, Taane; Lee, Ji-Sook; King, Elizabeth; Kingdon, Caroline; Cliff, Jacqueline (Feb 20, 2017). "The UK ME/CFS Biobank for biomedical research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis". Open Journal of Bioresources. 4 (1): 4. doi:10.5334/ojb.28. ISSN 2056-5542. PMC 5482226Freely accessible. PMID 28649428. 
  18. Scheibenbogen, Carmen; Freitag, Helma; Blanco, Julià; Capelli, Enrica; Lacerda, Eliana; Authier, Jerome; Meeus, Mira; Castro Marrero, Jesus; Nora-Krukle, Zaiga (Jul 26, 2017). "The European ME/CFS Biomarker Landscape project: an initiative of the European network EUROMENE". Journal of Translational Medicine. 15 (1): 162. doi:10.1186/s12967-017-1263-z. ISSN 1479-5876. PMC 5530475Freely accessible. PMID 28747192. 
  19. Lacerda, Eliana M.; Kingdon, Caroline C.; Bowman, Erinna W.; Nacul, Luis (2018). "Using a participatory approach to develop and implement the UK ME/CFS Biobank". Fatigue: Biomedicine, Health & Behavior. 6 (1): 1–4. doi:10.1080/21641846.2018.1396021. ISSN 2164-1846. PMID 29938127. 
  20. Kingdon, Caroline C.; Bowman, Erinna W.; Curran, Hayley; Nacul, Luis; Lacerda, Eliana M. (Dec 1, 2018). "Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls". PharmacoEconomics - Open. 2 (4): 381–392. doi:10.1007/s41669-018-0071-6. ISSN 2509-4254. PMID 29536371. 
  21. Murovska, Modra; Lacerda, Eliana; Sekulic, Slobodan; Capelli, Enrica; Lorusso, Lorenzo; Shikova, Evelina; Scheibenbogen, Carmen; Alegre, Jose; Pheby, Derek (Sep 1, 2018). "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. 8 (9): e020817. doi:10.1136/bmjopen-2017-020817. ISSN 2044-6055. PMID 30181183. 
  22. Lacerda, Eliana; Mudie, Kathleen; Butterworth, Jack D.; Kingdon, Caroline C.; O'Boyle, Shennae; Nacul, Luis (Dec 4, 2018). "The UK ME/CFS Biobank: A Disease-Specific Biobank for Advancing Clinical Research Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Frontiers in Neurology. 9. doi:10.3389/fneur.2018.01026. ISSN 1664-2295. PMID 30564186. 
  23. Lacerda, Eliana M.; McDermott, Clare; Kingdon, Caroline C.; Butterworth, Jack; Cliff, Jacqueline M.; Nacul, Luis (Jan 10, 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: An International Journal of Public Participation in Health Care and Health Policy. doi:10.1111/hex.12857. ISSN 1369-7625. PMID 30632248. 
  24. 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; Riley, Eleanor (Apr 16, 2019). "Cellular Immune Function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Frontiers in Immunology. 10. doi:10.3389/fimmu.2019.00796. ISSN 1664-3224. 

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Bias - Bias in research is "a systematic deviation of an observation from the true clinical state".

Accuracy - The "closeness of an observation to the true clinical state". With respect to diagnostic tests, "accuracy" means how specific and sensitive the test is.

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.