2019

This version is not peer-reviewed https://www.preprints.org/manuscript/201902.0029/v1...

https://www.surveymonkey.co.uk/r/GQR9Y8M

If you have used private or NHS counselling to help with emotional, mental health or relationship problems linked to ME/CFS did you find it helpful? Yes - very helpful overall Yes - very helpful for some aspects Yes - quite helpful overall Yes - quite helpful for some aspects Neutral - neither...

Some revelations about shenanigans at NICE - the IAPT team is in charge of the NICE guidelines for ME/CFS - as flagged up by Hope 4 Fibro & ME Northern Ireland - back in 2017!!! According to the IAPT webpage it's still listing the "CFS/ME" guideline as under their control - that's the...

Paywalled at https://www.journalofinfection.com/article/S0163-4453(19)30027-1/fulltext

Paywalled at https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.a.61055

A journalist is looking for a case study of parents of a child with ME who have had social services become involved inappropriately. I googled and she’s written about ME before: https://www.thesun.co.uk/fabulous/6235179/chronic-fatigue-syndrome-me-and-me/

http://www.virology.ws/2019/01/31/trial-by-error-bristol-investigating-crawley-papers/

New BACME guidelines for severe ME See post #17 for copy of the 2019 BACME document and post #43 for the 2024 update " The Sussex ME Society works for the nearly 5,000 people in the county affected by Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome(CFS) including many people from the...

Steve Brine's Troubling Claim in Parliamentary Debate on ME I want to focus on a point Brine made regarding the importance of including updated information about ME in medical education—one of the key planks in the motion passed by unanimous voice vote on Thursday.

https://www.facebook.com/meassociation/posts/2098397253551255

Source: ACM CHI Conference on Human Factors in Computing Systems 2019 Date: May 4-9, 2019 URL: https://researchportal.bath.ac.uk/en/publications/patient-perspectives-on-self-management-technologies-for-chronic- Ref: https://chi2019.acm.org Patient perspectives on self-management technologies...

Moderator note: This post has been copied to create a new thread on the day of the debate. The thread on preparations for the debate is here Ways to watch live; https://parliamentlive.tv/Commons https://www.bbc.co.uk/iplayer/live/bbcparliament (UK only) (The BBC Parliament channel can also be...

http://www.virology.ws/2019/01/23/trial-by-error-action-for-mes-employment-advice/ Also includes @Trish 's letter to AfME about the "Toolkit for professionals".

Initiating Care of a Patient with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) This paper introduces the primary care physician to the unique and challenging aspects of initially diagnosing and managing a complex condition for which there are a plethora of symptoms, few physical...

:) http://www.virology.ws/2019/01/22/trial-by-error-s4me-summary-for-week-of-january-14th/

Trial By Error: My Six-Month Review 22 January 2019 By David Tuller, DrPH http://www.virology.ws/2019/01/22/trial-by-error-my-six-month-review-2/ So it’s time again to review my work and figure out what I’ve been doing. My crowdfunding from last April has been covering my half-time position...

Carol Monaghan Scores Another Parliamentary Debate "Carol Monaghan, a member of Parliament from the Glasgow area, has done it again. This week she is spearheading a three-hour debate in the House of Commons about the awful situation confronting ME patients in the UK. (The organizers of this...

https://spoonseeker.com/2019/01/21/coming-down-the-line/

This is a letter we sent from S4ME to NICE as discussed in a voting thread for those members who have posted enough to have voting rights. Sorry I forgot to post it here earlier