united kingdom

Shut away and threatened like animals: Families tell how their children with autism and learning disabilities were locked away in secret institutions for years after they asked for help Those with autism and learning disabilities have fallen into 'dismal ‘care’ Parents shocked after children...

My Member of Parliament Carol Monaghan MP will be at the Backbench Business Committee meeting today at 2:30 to discuss the next UK Parliamentary Debate. https://calendar.parliament.uk This link for Parliament TV below should work nearer the time...

Dr Suzanne O’Sullivan, author of It’s All In Your Head, is to appear on BBC Radio 4’s The Life Scientific on 6 November: https://www.bbc.co.uk/programmes/m000112j According to MEpedia, Dr O’Sullivan “published her book, It's All In Your Head, in 2015. It is a book about medically unexplained...

If so, how to get it and from whom?

It affects claimants who were transferred from the old Incapacity Benefit (IB) to the newer Emploment & Support Allowance (ESA). They were wrongly put in the Contributory group rather than the Income-based group and so were underpayed to the tune of £1 billion...

Just spotted this on ME Research UK's Facebook page. [The current committee member list can be found on this page, https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents. Previously I linked directly to it but NICE keep changing the file name, this way, hopefully, the latest...

Just received notice that NICE have published their final scope for their review of the diagnosis and management guidelines. Final scope can be viewed here, https://www.nice.org.uk/guidance/gid-ng10091/documents/final-scope Stakeholder comments and responses from NICE can be viewed here...

https://www.meaction.net/2018/10/11/meet-with-your-mp-about-me-toolkit/

This thread has been split from a thread about a new study: UK: Brighton and Sussex University Hospital and Medical School - Chronic Pain and Fatigue Several years ago CFS research Foundation raised money for a pain study. After Anne Faulkner died, Afme took it over. I havent seen any paper and...

https://www.bbc.co.uk/news/uk-45770998 Wait a minute, support from other patients is a good thing??? ;)

Sheffield ME & Fibromyalgia Group We are excited to be hosting Dr. David Tuller, DrPH, discussing scientific integrity and clinical trials in myalgic encephalomyelitis. Join us at The Leopold Hotel, 23rd October, 7pm, for what should be a fascinating evening. RSVP on the event page. Dr Tuller...

https://www.hsj.co.uk/quality-and-performance/cqc-cannot-be-relied-on-to-enforce-duty-of-candour/7023478.article?mkt_tok=eyJpIjoiTWpSaE5HWXdZelUzWmpFMSIsInQiOiJqSnZvVXBlNndkbFQ3XC9jMEk2MUNWU05kSkNUSldEcXJQRzFpK0p0SXVMRTlqZlwvaXg0NlMzYmxQWWdEeXI2Mnp1Nm43SHhBTm9cL29qVG42QTdBQzFPcWhJKzE2VkgrRXBiSVcz...

This thread has been split from the Stanford Community Symposium 2018 thread. Ron Tompkins new Harvard based group have been engaging with U.K. biomedical researchers at Birmingham and Nottingham and are looking at putting in for MRC funding Didn’t catch names but I think they were on his slides.

https://bmjopen.bmj.com/content/8/9/e020775

This quick poll is designed to be a conversation starter. ME Association Website Survey: Why are we asking about the NHS and ME/CFS? Dr Charles Shepherd, Hon. Medical Adviser, ME Association. In this month’s website survey, we want to talk about the NHS and the extent to which people with...

Moderator note: This post and subsequent posts have been moved from this thread: David Tuller: Trial By Error: The Cochrane Controversy There is also financial hardship/harm, including (in the UK at least) financial harm that can have far reaching implications when someone retires. There are...

Epigram: Senior Bristol researcher resigns after admitting to research misconduct A researcher at the University of Bristol’s school of molecular and cellular medicine resigned this summer after investigations were started into allegations of ‘fabricating data’ and bullying in the lab.

(Note - this post was actually made on 4 Jul 2022) Note from the moderation team: This thread is for posts about ME/CFS services in the United Kingdom generally. If you have comments about specific services, please post on the relevant service thread (listed below or make a new thread). We...

Hi! I was absolutely gobsmacked today to find out that the recording of my PIP assessment has not been used by the DM at the MR stage. This is because the DWP never request the recording from the IAS. This is because they need permission from the HCP to listen to it and also they don’t have the...

Moderator note: This post and several subsequent posts have been moved from this thread. Posts requesting the move have been deleted. CPD Chronic Fatigue Syndrome 21 August @ 09:00 - 16:30 The University of Bolton now offers a variety of Continuing Professional Development (CPD) events in...