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He has tweeted about DecodeME previously, see https://www.s4me.info/threads/uk-decodeme-recruitment-open-online-questionnaire-postal-spit-kit-12pm-12th-sept-2022.29463/page-6#post-437454 as for the "self interest of charities", the less said about that ridiculous claim the better.

Lay Summary Patients with inflammatory bowel disease (IBD) often report fatigue. However, the reasons for this are poorly understood. In this study of people with IBD, we demonstrate that all-or-nothing behavior (being very active then needing to resting a while) and catastrophic thinking...

Gut problems may be early sign of Parkinson's disease, https://www.bbc.co.uk/news/health-66604155

Full title: Gastrointestinal syndromes preceding a diagnosis of Parkinson’s disease: testing Braak’s hypothesis using a nationwide database for comparison with Alzheimer’s disease and cerebrovascular diseases Abstract Objective Braak’s hypothesis states that Parkinson’s disease (PD)...

Trial By Error: DecodeME Team Describes Study Sample; The Atlantic’s Ed Yong Covers PEM; STAT Busts NIH’s Stumbling Long Covid Efforts...

Trial By Error: DecodeME Team Describes Study Sample; The Atlantic’s Ed Yong Covers PEM; STAT Busts NIH’s Stumbling Long Covid Efforts https://virology.ws/2023/08/24/trial-by-error-decodeme-team-describes-study-sample-the-atlantics-ed-yong-covers-pem-stat-busts-nihs-stumbling-long-covid-efforts/

Trial By Error: DecodeME Team Describes Study Sample; The Atlantic’s Ed Yong Covers PEM; STAT Busts NIH’s Stumbling Long Covid Efforts https://virology.ws/2023/08/24/trial-by-error-decodeme-team-describes-study-sample-the-atlantics-ed-yong-covers-pem-stat-busts-nihs-stumbling-long-covid-efforts/

This should help to explain the process, https://openresearch.nihr.ac.uk/about, but simply, yes, it was a preprint but following peer review is now available in its final form on the same platform. Link to final version here, https://openresearch.nihr.ac.uk/articles/3-20/v4

Thanks Binkie. Does it link to the DecodeME website in that version?

I think they would view such alternative views as a main part of their programme unfortunately, and they would have no intention of stopping people airing them.

This briefing brings together disability data from a range of sources, providing information on the size and characteristics of the UK's disabled population, and highlighting disparities between the life experiences of disabled and non-disabled people. How many people have a disability? The...

No, as it is outside the scope of our investigation, which isn't to say that it is a good or a bad thing to investigate, just that we aren't.

Abstract Among the unknowns in decoding the pathogenesis of SARS-CoV-2 persistent symptoms in Long Covid is whether there is a contributory role of abnormal immunity during acute infection. It has been proposed that Long Covid is a consequence of either an excessive or inadequate initial immune...

Not sure this is worth a new thread. Clinimetrics: Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue), 2023, Ilsley and Howden Commentary Strengths of the FACIT-Fatigue include its brevity and ease of administration. Validation of the FACIT-Fatigue across multiple chronic...

Abstract Predicting the clinical course of Covid-19 is a challenging task, given the multi-systemic character of the disease and the paucity of minimally invasive biomarkers of disease severity. Here, we evaluated the early (first two days post-admission) level of circulating hsa-miR-195-5p...

STV News website, https://news.stv.tv/east-central/women-more-severely-affected-by-me-edinburgh-university-study-claims Scottish Herald, https://www.heraldscotland.com/news/national/23743560.women-severely-affected-study-claims/ Good Morning Scotland, https://www.bbc.co.uk/sounds/play/m001pt45...

Also in the Independent, https://www.independent.co.uk/news/uk/experts-action-university-of-edinburgh-national-institute-for-health-and-care-excellence-b2398305.html

DecodeME social media post. "We've published our initial findings from the questionnaire data from the first 17k participants. Read our summary blog:https://shorturl.at/wBOQ3 Or read the full article: https://shorturl.at/istzT You can still sign up to #DecodeME: https://rb.gy/0lxxx"...

There is a bunch of articles in the media at the moment about our initial analysis of questionnaire answers. The separate thread for this publication can be found here, Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al, and obviously we hope this...

Sky News Women 'suffer more from ME', according to largest ever study into the disease "Not only are women far more likely to suffer from ME, but they're also more likely to have more symptoms, and co-occurring conditions that are more severe, according to early results of the largest-ever...