united kingdom

This thread was created by moving posts from this thread. Several posts suggesting and agreeing to the move have been deleted or edited. My wife and I did in fact attend one of our MP's surgery appointments today. We had been allocated 10 mins and were in there more like 25 mins. Our MP is a...

The consultation for the draft scope closes 26 July 2018 at 5pm. Therefore, we need members to look at each section of the draft scope and provide feedback, in order to inform any comment that S4ME may make on the draft. So please read the below and comment away! (Full document can be found...

The consultation for the draft scope closes 26 July 2018 at 5pm. Therefore, we need members to look at each section of the draft scope and provide feedback, in order to inform any comment that S4ME may make on the draft. So please read the below and comment away! (Full document can be found...

The consultation for the draft scope closes 26 July 2018 at 5pm. Therefore, we need members to look at each section of the draft scope and provide feedback, in order to inform any comment that S4ME may make on the draft. So please read the below and comment away! (Full document can be found...

Continues at http://wames.org.uk/cms-english/2018/06/timeforunrestwales-the-cabinet-secretary-for-healths-plans-for-me-cfs/

Two important actions in the #MEAction report on yesterday's Westminster debate: Thank the MPs who attended We need your help to keep the momentum going. Now more than ever, it’s crucial we have the capacity to sustain and grow the impact of this work. Donate today to our crowdfunding...

Email from NICE. NICE consultation page is here, https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/consultation/html-content-3 and direct link to the draft scope is https://www.nice.org.uk/guidance/GID-NG10091/documents/draft-scope-2 NICE committee recruitment page is here...

http://researchbriefings.parliament.uk/ResearchBriefing/Summary/CDP-2018-0155#fullreport

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...