Search results

“I have had #severeME for 26 years” “The frustrating thing about sometimes having 30% capacity is that I can do so much more from well-rested but it is an illusion, which masks my true capacities. They are always much lower than I think”...

New, non-discussion thread I have just set up: (No discussion) E-letters submitted to JNNP replying to White et al. "Anomalies in the review process & interpretation of the evidence in the NICE..."...

Francis Ak'enamé

[This was initially posted on the JNNP then deleted with the following comment posted https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463.responses#notice-regarding-rapid-responses ] The full text of MEAction UK’s rapid response submitted to the JNNP article can be read here...

Published: https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463.responses#shortcomings-in-the-commentary-by-white-et-al Shortcomings in the commentary by White et al. Dom Salisbury, Independent Patient Researcher None Other Contributors: Robert H Saunders, None Jonathan CW Edwards...

Moderator note: This thread is for collecting copies of letters submitted as rapid responses to the article discussed here: Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al To discuss these letters, please go to that...

Free fulltext: https://www.tandfonline.com/doi/full/10.1080/09638288.2023.2242783 Occupational therapy-based self-management education in persons with post-COVID-19 condition related fatigue: a feasibility study with a pre-post design Ruth Herschea , Andrea Weisea , Beate Hummelb and Marco...

A short blogpost by a participant: DECODEME STUDY https://lizakarlewriter.wordpress.com/2023/08/04/decodeme-study/

Long covid an 'ongoing and active issue' in Ireland with 200 symptoms https://www.irishexaminer.com/news/spotlight/arid-41200315.html I think Prof Linnane gives a likely overly positive view of outcomes. He does have a conflict of interest. Also people with #LongCovid could stop going as they...

I remember seeing a copy of the supposed final Gibson Parliamentary inquiry report. However the final version that came out the next day had unfortunately been watered down.

I wasn’t told directly. A UK advocate posted it to a group for group leaders.

I think a good paper to cite on this point is: PACE investigators' response is misleading regarding patient survey results Karen D Kirke. J Health Psychol. 2017 Aug. https://journals.sagepub.com/doi/10.1177/1359105317703787 It is very frustrating that Action for ME under Chris Clark allowed...

Yes, I remember it was similar with the ME Action UK response where it hadn't been published online on that date but a later date. It may be the date it was submitted?

Well done to Dom Salisbury, Robert H Saunders & Jonathan CW Edwards on their e-letter, "Shortcomings in the commentary by White et al." which has just been published https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463.responses#shortcomings-in-the-commentary-by-white-et-al

Free fulltext: https://urfpublishers.com/open-access/research-insights-to-long-covid.pdf Journal Journal of Advanced Biomedical Engineering Publication date 2023-07-20 Keywords Long-COVID, post-acute Covid-19 syndrome, post-infectious syndromes, chronic fatigue syndrome, brain fog...

https://www.sciencedirect.com/science/article/pii/S2001037023002775 Computational and Structural Biotechnology Journal Available online 5 August 2023 Mini-Review The Microbiome in Post-Acute Infection Syndrome (PAIS) Author links open overlay panel, , , a Center for Infection and Immunity...

Association Chairperson, Vera Kindlon, was one of 55 co-authors of this letter "Global ME community is unified in firm support for the NICE 2021 ME/CFS guideline" organised by the @WorldMEAlliance in response to a recent commentary by CBT & GET proponents...