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ME Research UK: A quote by Dr Avi Nath has left many disappointed. “…the population affected by #longCOVID is so much larger and the symptoms are so much more severe compared to ME/CFS that we decided that what we should do is focus on long COVID.” Read commentary: https://bit.ly/4fCZFya

ME Research UK: Although research has linked low socioeconomic status (SES) – a measure of economic and social status, with an increased risk of chronic disease(s), such as cardiovascular disease, and type 2 diabetes, less is known about how SES impacts the risk of ME/CFS – also a chronic...

Maeve’s inquest was a whitewash and the coroner betrayed everyone living with ME/CFS https://www.thecanary.co/opinion/2024/08/12/maeve-boothby-oneill-inquest/ The Canary on Twitter, "Maeve's inquest was a whitewash and the coroner betrayed everyone living with #MEcfs #MaeveInquest Deborah...

Some info https://www.actionforme.org.uk/news/new-online-learning-for-gps-on-severe-me/

This is from this study: https://clinicaltrials.gov/study/NCT03952624

https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2024.1429275/full ORIGINAL RESEARCH article Front. Med., 12 August 2024 Sec. Family Medicine and Primary Care Volume 11 - 2024 | https://doi.org/10.3389/fmed.2024.1429275 This article is part of the Research Topic Shedding...

I don’t know anything more at the moment but it sounds very specific to be made up @EmergeAus has green lit this study: 'Examining the Relationship Between Adverse Childhood Experiences, Sensory Processing Sensitivity, and Fatigue Severity' Chief Investigator, Dr Nanette Gerlach...

[Not sure whether CFS was rigorously defined or not] https://www.chinagp.net/CN/abstract/abstract8440.shtml Characterization of Intestinal Flora in Different Age Groups with Chronic Fatigue Syndrome XU Yisha，LI Chunmei，WANG Chengcheng，GUO Wei，GAN Yunong，ZHANG Yu，ZHANG Wen，YU Congcong...

Tuteja AK, Leung DT, Fang JC, Talley NJ, Stoddard GJ. Randomized double-blind placebo-controlled study to evaluate the effect of long-acting mesalamine on postinfectious irritable bowel syndrome with diarrhea. Neurogastroenterology & Motility. 2024; 00:e14889. doi:10.1111/nmo.14889...

This Severe ME Day, patients are still dying in hospitals as the world walks by https://www.thecanary.co/opinion/2024/08/08/severe-me-day-8-august/

https://epub.technikum-wien.at/obvftwhsm/content/titleinfo/10192639/full.pdf MASTERʼS THESIS Thesis submitted in fulfillment of the requirements for the degree of Master of Science in Engineering at the University of Applied Sciences Technikum Wien - Degree Program Tissue Engineering and...

Tweet reads: A painful irony: The inquest hearing on the death of Maeve Boothby O’Neill took place during Home Artificial Nutrition awareness week, which runs from 5-11 August: https://pinnt.com/HAN-Week-2024.aspx Improved awareness much needed More info: @PINNTCharity #HANweek #SevereME #MEcfs #CFS

“Have a detailed care plan and advanced directive they can follow which CLEARLY states your wishes should you be incapacitated or unconscious and unable to make decisions for yourself. Make sure your advocate keeps copies of these documents in a safe place and brings them to the hospital.”

“Which brings us to the need to have an advocate. If you have the luxury of choosing your advocate (many of us do not) you want to pick someone who is knowledgeable about your conditions, readily available and calm and cool under pressure.”

“When you are hospitalized - you give up your agency. You are put in the control of doctors & nurses who may have limited understanding of your condition. What & when you eat, when you take your medications (and what medications you’re given)…it’s all out of your control”

(Also shared to the Sussex & Kent ME/CFS Society thread: https://www.s4me.info/threads/united-kingdom-sussex-kent-me-cfs-society-news.1906/page-9#post-547776 ) For what it is worth: Source: Sussex & Kent ME/CFS Society Date: August 9, 2024 [Press release] Very Severely affected ME Patients...

For what it is worth: Source: Sussex & Kent ME/CFS Society Date: August 9, 2024 [Press release] Very Severely affected ME Patients ---------------------------------- Severe ME Awareness time this year coincides with a British coroner's report (9/8) on the death of a 27 year old woman while...

"August 2024 International Research & Advocacy Roundup" from Emerge Australia https://www.emerge.org.au/news/august-2024-international-research-and-advocacy-roundup/ Our International Roundup provides a brief snapshot of some of the ME/CFS research funding, clinical care and advocacy actions...

I don't think a paper has so far been published using this data. She references a lot of well-known figures from the ME/CFS world in Australia in the acknowledgements. This involved some funding from the Open Medicine Foundation.

https://vuir.vu.edu.au/48562/ Investigation of the Gut Microbiome and Host Metabolome in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Download JAA-KWEE_Amber-Thesis.pdf - Submitted Version (33MB) | Export Jaa-Kwee, Amber Fung Yi Li (2024) Investigation of the Gut Microbiome and Host...