united kingdom

Speaks for itself really, appalling: https://amp.theguardian.com/society/2018/apr/14/disabled-people-lose-legal-aid-99-per-cent-benefits-disputes

" What is Lyme disease? How ticks spread the disease, and the symptoms to watch out for Natasha Holt Lyme disease is an infectious illness spread by the bite of ticks, with around 3,000 new cases in the UK every year. But the symptoms of the disease can often be mistaken for other conditions...

I know there are already a couple of threads on #Millions Missing for the UK (ie London, Southampton) but as they are all likely to be on the same day (12th May) and the info largely the same thought a general one might be a good idea. #MillionsMissingManchester albert square, manchester 12th...

I think all of the reports from the Chief Medical Officer's Working Group on CFS/ME are available online in various places. Do people already have these and have been through them or would they be useful to download (which I am happy to do)?

News article from the Shropshire Star A nice story but my bolded bits stand out to me as refreshing change in how ME is reported! "The sculpture being created by The British Ironwork Centre in Oswestry, will be unveiled at The Shrewsbury and Telford Hospital NHS Trust’s charity Fun Day on...

In light of recent events I thought this was important. " In England and Wales, you can be detained in hospital against your will if you are diagnosed with a mental health disorder and it’s deemed that your health would benefit from a stay in hospital. In 2007, the definition of ‘disorder’ in...

"M.E awareness: Liberal Democrats look to kick-start campaign on the hidden disease In a motion to Council on the 22nd March, Liberal Democrat Councillors are looking to kick-start a campaign to raise awareness on the often overlooked and hidden disease; Myalgic Encephalomyelitis, otherwise...

Finally received email confirmation of this: Dear Colleague, NICE guideline: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (Oct 2020) https://www.nice.org.uk/guidance/indevelopment/gid-ng10091 Guideline scoping workshop on Friday 25 May...

Link : http://theconversation.com/rapid-rise-in-mortality-in-england-and-wales-in-early-2018-an-investigation-is-needed-93311 In the first seven weeks of 2018, over 10,000 (12.4%) more people died in England and Wales than was usual for the time of year. No official explanation from government...

" 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...