Lacerda et al 2017 Using a participatory approach to develop and implement the UK ME/CFS Biobank

Dolphin · Oct 31, 2017

Free full text:
http://www.tandfonline.com/doi/full/10.1080/21641846.2018.1396021

Journal
Fatigue: Biomedicine, Health & Behavior

Editorial
Using a participatory approach to develop and implement the UK ME/CFS Biobank
Eliana M. Lacerda,Caroline C. Kingdon,Erinna W. Bowman &Luis Nacul
Pages 1-4 | Published online: 30 Oct 2017

https://twitter.com/user/status/925438274419773441

Andy · Oct 31, 2017

Some great quotes in this, in particular

To develop a resource for the study of ME/CFS with no explicit support from the community of beneficiaries would represent a significant risk of being unsuccessful or lacking purpose, and could also risk further deterioration of the relationship between patients and healthcare professionals.
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Esther12 · Oct 31, 2017

Thanks. I don't think I'd have read this, based on just the title and abstract, but it was an easy read and did have some fun bits, eg:

Disagreements are no less relevant in ME/CFS research, in which research priorities and conducts have been challenged, and patients have been expressing great dissatisfaction with study conclusions, the lack of transparency, and the methodological rigour of some studies, as exemplified by the controversies and disagreements generated by the PACE-trial.

[14 Geraghty KJ. ‘PACE-Gate’: When clinical trial evidence meets open data access. J Health Psycholy. 2016;22:1106–1112.[Web of Science ®], [Google Scholar],15 Wilshire C, Kindlon T, Matthees A, et al. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue: Biomed, Health Behav. 2017;5:43–56.[Taylor & Francis Online], [Web of Science ®], [Google Scholar]]
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PS: It left me feeling like a fan of this group.

Andy · Oct 31, 2017

Donation page to support their efforts is http://cureme.lshtm.ac.uk/donate-to-cureme/ - the recent NIH grant (details here http://cureme.lshtm.ac.uk/major-announcement/) they received is for a specific study and isn't for ongoing costs, so anything extra they can get will be really useful.

Andy · Feb 2, 2018

Now in physical print

Sean · Feb 3, 2018

...risk further deterioration of the relationship between patients and healthcare professionals.
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So much said by a single word.

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Lacerda et al 2017 Using a participatory approach to develop and implement the UK ME/CFS Biobank

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