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Chalder Fatigue Questionnaire mentioned. Related forum threads: Discussion on fatigue measurement scales: https://www.s4me.info/threads/fatigue-measurement-scales.16307/ S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire...

Pust, G., Pöttgen, J., Randerath, J., Lau, S., Heesen, C., Gold, S. M., & Penner, I. K. (2019). In search of distinct MS-related fatigue subtypes: results from a multi-cohort analysis in 1.403 MS patients. Journal of neurology, 266(7), 1663–1673. https://doi.org/10.1007/s00415-019-09311-2...

Chalder Fatigue Questionnaire mentioned here: Pust, G., Pöttgen, J., Randerath, J., Lau, S., Heesen, C., Gold, S. M., & Penner, I. K. (2019). In search of distinct MS-related fatigue subtypes: results from a multi-cohort analysis in 1.403 MS patients. Journal of neurology, 266(7), 1663–1673...

Thread discussing the protocol and the data requested by JohnTheJack here.

This study and thread had completely escaped me -- landed here when searching the forum for the Work Productivity and Activity Impairment Questionnaire (WPAI) . Took me a while to realize that the researcher finally published the failed study some time after @JohnTheJack had started to...

Sponsors and Collaborators: University of Dublin, Trinity College Science Foundation Ireland (SFI) About the PI: Román Romero Ortuño https://www.tcd.ie/medicine/staff/romeroor/ His research contributions in the area of frailty have been recognised with the 2015 British Geriatrics Society...

Which would be a pity, as the need for objective measures in this field is rarely acknowledged and this seems to be done by a highly respected PI, and at a first glance I thought it's a good start and it could be worthwhile to reach out to the researchers to make them aware that if they wanted...

https://www.s4me.info/threads/hand-grip-strength-as-a-clinical-biomarker-for-me-cfs-2018-nacul-et-al.6612/ More forum threads on hand grip strength via tag search: https://www.s4me.info/tags/hand-grip-strength/

The investigators seem to have some non-evidenced ideas about what ME is but also about the measurements they want to use. FIS-40 = Fatigue Impact Scale; This scale is intended to measure the impact of fatigue on patients' functioning, it's not primarily about perception (and much better...

Primary Outcome Measures : Active Stand with Near Infrared Spectroscopy and Electromyography [ Time Frame: Day 0 ] 10 minute supine rest, followed by a three minute stand Drug Free Passive Head Up Tilt Test [ Time Frame: Day 0 ] 10 minute supine rest, followed by a 10 minute 70 degree passive...

Previous research by Andreasson / Jonsjö: https://www.s4me.info/threads/the-role-of-low-grade-inflammation-in-me-cfs-chronic-fatigue-syndrome-associations-with-symptoms-2019-jonsjö-et-al.13063/...

The Guardian: Long Covid: nearly 2m days lost in NHS staff absences in England/ Ian Sample /24.01.2022 (ME not mentioned) MPs urge support for workers after data shows extent of ongoing illness in first 18 months of pandemic More at link...

I think the current 'direct e-mail template' on the website is good for general reach-out. Just saw that the content of 'simple' and 'personal' e-mail is the same for both options: https://www.decodeme.org.uk/ways-to-share/#

Thanks, Andy. And apologies: I can't understand how I could miss that the minimum age is the first thing mentioned below the headline on the "register your interest" form. :facepalm: In this case, I hope it's OK to bump some earlier suggestions: 1) Leaflets / postcards a) On the website...

Apologies -- not able to catch up with ME news and DecodeME updates at the moment. Thought about putting an e-mail together to family and friends who haven't heard from me for a long time due to my illness.(*) I would like to ask them to help me and fellow sufferers whom this illness makes...

Yes, it seems that the confusion hasn't been due to the medical understanding of MS but due to misdiagnosis for other reasons? See ME/CFS Skeptic's blog: https://mecfsskeptic.com/psychosomatic-history-of-multiple-sclerosis/ (Forum thread on the blog series here .) Only read the abstract--...

Posted this mainly for the discussion on research methodology and Cochrane.

Interesting that Christopher Eccleston (Cochrane) is a co-author -- on both papers. Edited to add: Thread on Eccleston's book 'Embodied: The psychology of physical sensation' (2015) here.

Implanted spinal neuromodulation interventions for chronic pain in adults - O'Connell, NE - 2021 | Cochrane Library https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD013756.pub2/full Background Implanted spinal neuromodulation (SNMD) techniques are used in the treatment of...

I wonder if it's possible to also post links to forum discussions, including critique on biomedical research papers, with some quotes?