united kingdom

" Work and Pensions Secretary Esther McVey has agreed to publish a series of reviews of Universal Credit after acknowledging there was “no point” in keeping them under wraps. The project assessment reviews for the flagship welfare reform reveal claims of bullying, harassment and discrimination...

After a recent bad relapse, I've come to the decision that I would like to try and apply for a wheelchair. I could of used one for a long time really, but pride gets in the way. There are probably 100s or even 1000s things I've missed over the years I could of gone to if I'd had the courage to...

https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ Screenshot of their linked file

Anyone know anything about this charity (apart from Countess of Mar is one of their patrons). They are on the NICE stakeholders list. I only found it because it gets mentioned a lot in this Parliamentary written evidence from c. 2014...

raised on another thread by @MEMarge. The CQC only deals with services in England but from briefly looking at their website the only ME/CFS service they seem to have inspected is Leeds which currently has an amber 'Requires Improvement' warning having been inspected in 2016. The various checks...

https://www.disabilitynewsservice.com/mystery-over-shock-fall-in-disability-benefits-paid-to-older-people/

Here is my analysis of the response from Caroline Dinenage MP, Minster of State for Care, during the Westminster Hall Debate on PACE and its effects on people with ME: https://www.meaction.net/2018/02/26/read-about-the-westminster-hall-debate-on-the-pace-trial-and-its-effects-on-people-with-me/...

Just found this on another forum : -------------------------------------- https://petition.parliament.uk/petitions/205106 Just found this petition on Facebook about imminent changes to the NHS... "If you live in the UK, for you and your family this could well end up being the single most...

This was originally posted by @Cinders66 here On 23rd February 1988, Scottish MP Jimmy Hood tried to introduce a Bill in to the UK parliament "to require an annual report to Parliament on progress made in investigating the causes, effects and treatment of myalgic encephalomyelitis." Details of...

I got asked to put these online. Not had a chance to read them yet myself, but apparently there may be some final minutes missing, as apparently they could not be found. They are numbered from 1-16, but I had difficulty getting them to attach in the right order. Sorry for any confusion.

NICE has promised to review its current guidelines on ME/CFS, which is not scheduled to be completed until 2020. Meanwhile it has left the current guidelines in place, despite the recommendations for treatments that are known to be harmful...

I thought that in response to the Ministers statement at the debate on PACE yesterday that a break down of funding for research between psychological 'treatment' and actual biomedical research would also clearly show how skewed the research into ME is. The only figures that have been collated...

We have a lot of threads about actions to take to support/promote this important event but no thread actually about the event itself. Parliamentary business for Tuesday 20 February 2018 House of Commons 11am - 11.30am Westminster Hall debate PACE trial and its effect on people with ME - Carol...

https://www.elft.nhs.uk/service/308/Chronic-Fatigue-Service So what happened shortly before December 2016?

We already have an extensive discussion thread on the subject here, https://www.s4me.info/threads/call-to-action-westminster-hall-uk-parliamentary-debate-pace-trial-and-its-effect-on-people-with-me-carol-monaghan-february-20.2294/ This thread is intended to gather the various ways we can inform...

Article in the Guardian Friday Feb 9th 2018 'Substantial minority' of disability claimants failed by system – MPs https://www.theguardian.com/politics/2018/feb/09/disability-claimants-substantial-minority-failed-by-assessment-system-mps-committee

Parliamentary business for Tuesday 20 February 2018 House of Commons 11am - 11.30am Westminster Hall debate PACE trial and its effect on people with ME - Carol Monaghan...

http://www.sleep-journal.com/article/S1389-9457(18)30017-0/fulltext?cc=y= Simon M. Collin, Tom Norris, Paul Gringras, Peter S. Blair, Kate Tilling, Esther Crawley Abstract Objective /Background: Sleep abnormalities are characteristic of chronic fatigue syndrome (CFS, also known as ‘ME’), but...

This was highlighted on @Tom Kindlon 's Facebook page. Delightful presentation from just under a year ago from King's Health Partners (https://www.kingshealthpartners.org/), explaining how, among other conditions, CFS is a MUS (or Persistent Physical Symptoms condition, the term us patients...

" Why primary care needs to migrate to SNOMED CT Two versions of clinical codes (Read v2 and CTV3) currently exist in General Practice. Not all GP systems use the same coding system. Parts of the Read code vocabulary are full and new codes have been allocated to unrelated areas. This makes...