united kingdom

For years dismissed as 'laziness', but now cruel disease is finally getting attention it deserves Rochdale News: "Now a three-hour Westminster Hall debate on Thursday afternoon (21 June, 1.30 to 4.30 pm), supported by the ME Association and other charities, will discuss treatments and research...

Another article by Steve Topple using ME and PACE as illustrative of current government policy, https://www.thecanary.co/opinion/2018/06/18/esther-mcvey-and-her-department-are-now-totally-out-of-control/

As a NICE stakeholder, S4ME can have input on this update process. I can't imagine that there is much, if any, interest here, we've got lots of other things to be getting on with, but just in case somebody wants to look at it...

Communication just received from NICE

Well done to Carol for getting this done. Details here: https://www.meaction.net/2018/06/06/uk-secures-westminster-hall-debate-on-me/ I don't know whether this precludes a debate in the House of Commons...

Only just seen this: Edit: Here's a link to it online (it was earlier this afternoon), which starts just as the discussion begins: https://parliamentlive.tv/event/index/50fb53f3-c6ea-4848-8e5d-c00d6a52f005?in=14:30:20 Thanks to @Andy for that link.

" QOF Fiasco 2: ’Immoral’ refusal to learn from mistakes By Jerome Burne Last week I wrote about the great QOF (Quality and Outcomes Framework) fiasco – the 30-billion-pound public health experiment involving the whole UK population without any kind of testing or pilot programs and without...

" Posted on 17 May 2018 Researchers at Keele University are looking for people with Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME) to discuss a study which aims to give a better understanding of the support needs of people suffering with the condition. A meeting will be...

" LOUGHBOROUGH MP Nicky Morgan has said she will work in Parliament to raise awareness of the devastating illness, ME. She spoke after joining viewers at a town screening of Unrest, an Oscar-shortlisted film by Harvard graduate Jen Brea which documents her life as a patient with Myalgic...

hi I've just been listening to radio Solent at 7:40am BBC local radio. Great advocacy by local lady regarding millions missing but the main drive from her was lack of funding which was responded to at the end by the same statement from the DOH given to the newsbeat documentary about £3.5m...

We've organised a performance to raise awareness and funds for ME at Wheal Martyn, China Clay Museum, St Austell, Cornwall. We hope that people with ME, their families, carers, friends and members of the public will come along to listen, connect and celebrate the amazing strength and resilience...

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...