outcome measures

Split thread :trophy@ There's actually a lot to be said for a modified version of what Collin & Crawley 2017 did - see tables 3 and 6 in this paper: https://pmc.ncbi.nlm.nih.gov/articles/PMC5513420/ [This may merit a different thread if people think it's worth discussing.] So something like...

Does anyone know more about this project? I've seen it mentioned twice recently, by Simon Carding and by Avindra Nath. The impression they give is that they want this scale to become widely adopted by researchers - which means it's important they get it right If they don't we might end up with...

Compelling evidence from meta-epidemiological studies demonstrates overestimation of effects in randomized trials that fail to optimize randomization and blind patients and outcome assessors [A number of authors are from Gordon Guyatt’s group at McMaster University in Canada] Objective To...

Abstract Background Neurostimulation is a highly effective therapy for the treatment of chronic Intractable pain, however, due to the complexity of pain, measuring a subject’s long-term response to the therapy remains difficult. Frequent measurement of patient-reported outcomes (PROs) to reflect...

Free fulltext: https://ccs.neu.edu/~ysun/publications/system-and-methods-to-determine-mecfs-and-longcovid-disease-severity-using-wearable-sensor-and-survey-data.pdf SYSTEM AND METHODS TO DETERMINE ME/CFS & LONG COVID DISEASE SEVERITY USING WEARABLE SENSOR & SURVEY DATA by Yifei Sun A Senior...

Patel KV, Amtmann D, Jensen MP, Smith SM, Veasley C, Turk DC. Clinical outcome assessment in clinical trials of chronic pain treatments. Pain Rep. 2021 Jan 21;6(1):e784. doi: 10.1097/PR9.0000000000000784. PMID: 33521482; PMCID: PMC7837993. Abstract Clinical outcome assessments (COAs) measure...

American College of Rheumatology. Preliminary definition of improvement in rheumatoid arthritis. Felson DT, Anderson JJ, Boers M, Bombardier C, Furst D, Goldsmith C, Katz LM, Lightfoot R Jr, Paulus H, Strand V, et al.Arthritis Rheum. 1995 Jun;38(6):727-35. doi: 10.1002/art.1780380602. Free to...

Full title: Core Outcome Set for Research and Clinical Practice in Post COVID-19 Condition (Long COVID): An International Delphi Consensus Study ‘PC-COS’ Abstract Background: Recent data suggest that many people experience Post COVID-19 Condition (Long COVID) following the acute phase of the...

This post has been copied and following posts moved from this thread: NICE pauses publication of updated ME/CFS guideline hours before publication was due - 17th August 2021 I'm still unsure whether this is a parody, but it appears not. This is the kind of thing that is at stake with the...

Copied from this thread: Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian Leaving some notes here regarding caveats when critiquing most common features of some researchers' claims about trial methodology and...

https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/index.asp https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/documents/POMME_Study_Info_June 2020.pdf eta: an apple a day keeps the doctor away?

preprint https://www.medrxiv.org/content/10.1101/2021.01.25.21250436v1 https://www.medrxiv.org/content/10.1101/2021.01.25.21250436v1.full.pdf

Pre-print, not peer-reviewed. Physical activity measures in patients with myalgic encephalomyelitis/chronic fatigue syndrome: correlations between peak oxygen consumption, the physical functioning scale of the SF-36 questionnaire, and the number of steps from an activity meter Rowe PC, Campen...

Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking Roxanne M. Parslow, Nina Anderson, Danielle Byrne, Kirstie L. Haywood, Alison Shaw...

Paywall, https://link.springer.com/article/10.1007%2Fs11136-019-02289-4 Sci hub, https://sci-hub.se/10.1007/s11136-019-02289-4

Posting this from Wessely in a 2009 interview, because it shows that he clearly understands the importance of double-blinding subjective outcome measures and controlling for the placebo effect, and is happy to (selectively) invoke this standard when it suits him to further his psychosocial...

This post was copied and subsequent posts either copied or moved from this thread: David Tuller: Trial By Error: So What's Happening with the MAGENTA Trial? Re the actometers; I know others have said this but why on earth didn't they use fitbits? Crawleys always going on about how she is 'like...

I don't remember seeing anything about this previously: http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/ The above page also includes this: I wonder if they'll try to justify a definition of recovery which just means 'filling in a few forms a bit more...

A researcher has asked me: does anyone know of any ME/CFS trials that have used a measure of post-exertional malaise as an outcome measure apart from the PACE Trial* *Aside: which published a yes/no measure (they had used a Likert scale but published a yes/no result) Edited to Add: The...