News
13 May 2008
As the government fights to prove that it understands the hardship faced by the most vulnerable people in society, a national survey published this week shows that many people who are severely affected by Myalgic Encephalomyelitis/ Encephalopathy (M.E.), have to struggle through the appeals system before they are awarded Disability Living Allowance (DLA).
12 May 2008
Today we present the initial findings of a survey by Action for M.E. and the Association of Young People with ME (AYME), focusing on health and welfare.
30 April 2008
M.E. Awareness Week takes place this year between 11-17 May, with International M.E. Awareness Day itself on 12 May.
03 April 2008
Thank you very much to everyone who completed our recent survey of health and welfare inequalities across the UK.
01 March 2008
Action for M.E. and the Association of Young People with M.E.s joint survey of health and welfare inequalities amongst people in the UK who have - or who have had - M.E. is now available online for completion by 31 March 2008.
29 February 2008
Top ten financial PR adviser, Pelham PR and leading corporate stockbroker, Panmure Gordon, came to blows outside the Royal Exchange recently - but it was all in a very good cause.
08 February 2008
Action for M.E. Chief Executive, Peter Spencer, will be one of the speakers at a conference of healthcare professionals at the Royal Society of Medicine (RSM) in London, 28 April 2008.
08 February 2008
The report of the scoping exercise of M.E. in Scotland, which Action for M.E. undertook on behalf of the Scottish Government, is now available online.
08 February 2008
A fun, fast, fundraising competition is about to hit cities across the UK - and it aims to raise money for Action for M.E.
10 January 2008
The next meeting of the All Party Parliamentary Group on M.E. will be held on Tuesday 22 January 2008, 4pm-5.30pm
Committee Room 17, House of Commons. The agenda is as follows:
12 December 2007
The next meeting of the All Party Parliamentary Group on M.E. will take place in Committee Room 17, House of Commons, at 4pm on Tuesday 22 January.
21 November 2007
There have been stories in the media about a possible legal challenge to the NICE guidelines. Action for M.E believes this challenge is misguided and will not be supporting it.
14 November 2007
Transcripts of the BBC Radio 4 You and Yours series on M.E., which was broadcast 2-12 November 2007, are now available online
06 November 2007
The Radio 4 focus on M.E. moves to a later slot today, as the lunchtime You and Yours programme hands over the reins to Case Notes, which is broadcast 9pm-9.30pm.
06 November 2007
The National M.E. Research Observatory is asking people with M.E. to help them to identify some of the different services currently available for people with M.E.
24 October 2007
The Action for M.E. 2008 Fundraising Trek along the Great Wall of China will feature on BBC 2 Lifeline programme, 2pm today, Wednesday 24 October 2007.
24 October 2007
Members of M.E. charities are being asked to help raise the profile of M.E. in Westminster by writing to their constituency MP, asking him or her to apply for a Commons adjournment debate on M.E.
22 August 2007
Press release
22 August 2007
National Institute for Health and Clinical Excellence (NICE) has published its guidelines on the diagnosis and management of M.E. (myalgic encephalomyelitis / encephalopathy) or chronic fatigue syndrome today, 22 August 2007.
17 August 2007
The Occupational Health guideline which was published by NHS Plus in October 2006 has been the subject of great concern to charities and other organisations serving the interests of people with M.E.
01 August 2007
Action for M.E. and AYME, the Association of Young People with M.E., are supporting the National Network for CFS/M.E. Therapists and National NHS Collaborative Conference, which will be held in Milton Keynes, 4-5 October 2007.
31 July 2007
The minutes of the All Party Parliamentary Group meeting held 12 July 2007, Committee Room 17, House of Commons, are now available.
31 July 2007
Unfortunately our Press Assistant, Chloe Stirk, has left Action for M.E. to take up a new post.
27 July 2007
Action for M.E. Chair Dr Trish Taylor will be taking part in a discussion on BBC Radio 4's 'You and Yours' at 12pm on Monday, 30 July.
20 July 2007
The tenth and final version of the Department for Work and Pensions guideline on M.E./CFS is published today, 20 July 2007.
13 July 2007
The meeting of the All Party Parliamentary Group yesterday, 12 July 2007, in the House of Commons was attended by Dr Des Turner MP, who Chairs the APPG, Dr Ian Gibson MP, Secretary of the Group and leader of last year’s Inquiry into the progress of scientific research on M.E., Celia Barlow MP and John Bercow MP.
02 July 2007
We have produced a short survey for you to give us your opinion of our 'Men & M.E.' awareness campaign.
29 June 2007
We are currently carrying out a scoping exercise on M.E. services on behalf of the Scottish Executive. We hope to consult as widely as possible with people with M.E and would, therefore, be very grateful if you could complete our questionnaire.
21 June 2007
The next APPG meeting, chaired by Dr Des Turner MP, will take place: 1.30 – 3pm on Thursday 12 July 2007 in Committee Room 17, House of Commons, Palace of Westminster (entry via St Stephen’s entrance).
06 June 2007
Action for M.E. has released ‘Men & M.E.’, a publication containing a range of information about M.E., gathered from two recent major surveys.*
18 May 2007
The meeting of the All Party Parliamentary Group met yesterday, 17 May 2007, in the House of Commons. Dr Ira Madan, Director of the NHS Plus project, said that she would be happy to include the WHO definition of M.E. as a neurological illness and was open to suggestions for further rewording of the guidance leaflets, if appropriate evidence was made available to her.
08 May 2007
On 29 April 2007, the Sunday Times printed an article by Rod Liddle, (Comment, April 29, p 15), in which he speculated about whether Brian Paddock, Britain’s highest ranking homosexual policemen, was retiring early “perhaps†because “he is suffering from a fashionable camp affliction such as RSI or M.E.â€
02 May 2007
Dr Ira Madan, Director of the NHS Plus project which recently published occupational health guidance on M.E., will appear before the next All-Party Parliamentary Group on M.E.
01 May 2007
MEN who fear they have M.E. were today urged to visit their doctors, as it was revealed that thousands are putting their long-term health at risk through delayed diagnosis.
30 April 2007
Sir Peter Spencer KCB takes up his new post today as Chief Executive of Action for M.E., the national charity for people with M.E.
25 April 2007
A range of national companies, organisations and charities have expressed their support of Action for M.E.'s 2007 'Men and M.E.' campaign.
19 April 2007
M.E. Awareness Month – MAY 2007 Action for M.E., the UK’s leading M.E. charity, is launching M.E. Awareness Month by announcing research results showing how the illness impacts on men – and how delayed diagnosis is putting thousands in danger.
05 April 2007
Before Members of the Scottish Parliament stood down earlier this week, 2 April 2007, prior to elections on 3 May, a number of Parliamentary groups and committees prepared legacy papers to inform the work of the next session.
26 March 2007
Support Action for M.E. every time you use the web!
25 March 2007
Action for M.E.’s theme for its 2007 campaign is Men and M.E. The campaign will include the launch of the results of a major survey undertaken earlier this year to discover how the illness impacts on men – including how it might affect men’s sense of masculinity and identity, and their likelihood of getting quickly diagnosed. A ‘fast’ diagnosis (i.e. within one year) has been shown to significantly reduce recovery time*.
02 March 2007
The meeting of the All-Party Parliamentary Group (APPG) on M.E., held at Westminster on 22 February 2007, was dominated by discussion about the draft clinical guideline on CFS/M.E., produced by the National Institute for Health and Clinical Excellence (NICE).
21 February 2007
Prof Michael Rawlins, Chair, National Institute for Health and Clinical Excellence, is unable to attend the meeting of the All-Party Parliamentary Group on ME at Westminster on Thursday (22 February 2007).
15 February 2007
The next APPG meeting, chaired by Dr Des Turner MP, will take place: 1.30 – 2.30pm on Thursday 22 February 2007 in Committee Room 17, House of Commons, Palace of Westminster (entry via St Stephen’s entrance).
14 February 2007
14th February is a day for celebrating the love we have for the people most close to us.
13 February 2007
If you are a man with M.E., you can now fill in our 'Men and M.E.' survey.
06 February 2007
A statement by national M.E. organisations on Version 9 of the Department for Work and Pensions (DWP) CFS/ME guidance document was discussed at the Cross Party Group (CPG) on M.E. at Holyrood, Edinburgh, 31 January 2007.
02 February 2007
Action for M.E.'s 2007 campaign
01 February 2007
Sir Michael Rawlins, Chairman, National Institute for Health and Clinical Excellence, will appear before the next All-Party Parliamentary Group on M.E.
29 January 2007
The National Institute for Health and Clinical Excellence (NICE) has announced that the publication date for their guideline on CFS/M.E. has been postponed from April until 22nd August 2007.
23 January 2007
Action for M.E. is launching ‘Friends of Action for M.E.’ on Tuesday 23rd of January at a drinks party sponsored by Pelham PR in London. This is a new scheme which we hope will get people involved with and supporting our work with regular donations.
17 January 2007
Having M.E. can make the smallest task a marathon effort. So, if you’re able, why not take part in a race and raise much needed funds for our fight against M.E?
19 December 2006
Action for M.E. has joined with other leading M.E. charities to express concern at the draft NICE guidelines.
30 November 2006
A BIG thank you to all our amazing London Marathon 2006 team! It was a great day and all of our 20 runners completed the course and raised thousands of pounds for our work for people with M.E. Congratulations to them!!
27 November 2006
Action for M.E. believes that effective guidelines are required to ensure that M.E./CFS is properly diagnosed, treated and managed.
27 November 2006
On Sunday 26th November the Gibson Inquiry report into progress in scientific research into M.E. / CFS was published, following five oral hearings and a review of other verbal and written evidence from charities, researchers, health professionals, people with the illness and carers.
21 November 2006
A meeting of the APPG, chaired by Des Turner MP, took place yesterday, 16 November 2006, in Committee Room 17, House of Commons. It was attended by MPs Ian Gibson, Steve McCabe, Andrew Stunell, Tony Wright and Betty Williams, an observer from NICE, representatives from a number of M.E. organisations, people with M.E. and carers.
17 November 2006
Action for M.E. would like to thank all those people who took part in our survey on the Draft NICE guideline on M.E./CFS.
13 November 2006
Over 30 research scientists and clinicians joined representatives of the Medical Research Council (MRC) and Action for M.E., 8-9 November 2006, at Latimer conference centre, Chesham, to identify opportunities for biomedical research into M.E.
03 November 2006
We want to know what you think about the NICE draft guidelines, so we have devised a survey for you to complete.
02 November 2006
The next meeting of the APPG, chaired by Des Turner MP, will take place:
1.30 – 2.30pm Thursday 16 November 2006
Committee Room 17, House of Commons,
Palace of Westminster
(Entry via St Stephen’s entrance)
30 October 2006
Action for M.E. has just released ‘Facts and Figures’, a publication containing a range of information about M.E., gathered from two recent major surveys.
29 October 2006
The official progress report on the first two years of the specialist M.E. services has recently been published.
05 October 2006
Action for M.E. was represented at a meeting called today by the National Institute for Health and Clinical Excellence (NICE), to discuss how the draft guideline on the diagnosis and management of M.E., published 29 September 2006, should be implemented.
29 September 2006
While Action for M.E. welcomes the fact that the draft NICE guideline on the diagnosis and management of M.E. is available for public consultation, we are very concerned about its recommendation that graded exercise and cognitive behavioural therapies should be the first therapies of choice, even for people who are mild to moderately affected by M.E.
28 September 2006
Minutes for July’s meeting of the All Party Parliamentary Group are available to read in the Campaigning section of this website.
14 September 2006
Action for M.E. and the Medical Research Council (MRC) have invited researchers from a broad range of specialisms and interests to attend a Research Summit on M.E. in November 2006.
03 August 2006
The Department of Work and Pensions is considering comments by a number of M.E. organisations, including Action for M.E., on version 8 of the draft guidance on M.E. for Disability and Carers Service decision makers, following a meeting in London on 20 July 2006.
27 July 2006
Action for M.E. is undertaking concerted action, to address the serious concerns expressed by service users, regarding the continued funding of a number of specialist M.E. services.
18 July 2006
The meeting of the All-Party Parliamentary Group on M.E. will go ahead on Thursday ¬20 July 2006 but without the Secretary of State for Work and Pensions, the Rt Hon John Hutton MP, who has been called to a Cabinet meeting which is taking place at the same time.
07 July 2006
Trish Taylor, the Chair of Action for M.E., gave a presentation to Dr Ian Gibson’s parliamentary inquiry into M.E.
03 July 2006
The Secretary of State for Work and Pensions, John Hutton MP, has agreed to appear before the next open meeting of the APPG on M.E. He will speak about his Department’s controversial proposals to revise the medical guidance on ME/CFS for Disability Living Allowance and Carer’s Allowance decision-makers.
26 June 2006
More Than you Know - the economic impact.
26 June 2006
It is not AfME policy to comment on individual cases but the death of Sophia Mirza has received considerable media coverage.
09 June 2006
Parliamentary Under Secretary of State for Health, Ivan Lewis MP, has responded to our Manifesto.
09 June 2006
Minutes for the latest meeting of the All Party Parliamentary Group are available to read.
05 June 2006
Greg Lake and his amazing band will be appearing in concert in aid of M.E. at the Royal Concert Hall Glasgow on Monday 25 September. All profits from ticket sales will go to Search M.E.
01 June 2006
Action for M.E. is looking for volunteers to run the BUPA Great North Run (GNR) on Oct 1.
17 May 2006
An Early Day Motion (EDM) congratulating AfME on its ‘More Than You Know’ campaign, was recently tabled by Edward Davey MP, the new Lib Dem spokesman on Education and Training. (The EDM is reproduced below).
11 May 2006
Action For M.E. presents a new manifesto for people with M.E. to 10 Downing Street.
09 May 2006
Research published today by AfME indicates that a hidden 55,000 people in Britain are so severely affected by M.E. that they are either bed-bound or house-bound.
09 May 2006
Media coverage over M.E. Awareness Week
28 April 2006
A public meeting of the All Party Parliamentary Group (APPG) on M.E. was held at Portcullis House, Westminster, 26 April 2006. The members who attended were MPs Andrew Stunell, Liz Blackman, Russell Brown, Dr Julian Lewis, Peter Luff and Tony Wright.
21 April 2006
The National Union of Students (NUS) has recognised that M.E. is widely misunderstood as an illness and has resolved to lobby the Government about services for people with M.E.
20 April 2006
Action for M.E. opened the first oral hearing of the Group on Scientific Research in to M.E. with a presentation by AfME Chair, Trish Taylor.
19 April 2006
Official confirmation of the All Party Parliamentary Group on M.E
18 April 2006
Action for M.E. are asking volunteers and fundraisers to take up the Grand Challenge by raising £1,000 at your own pace.
07 April 2006
Over 2,000 people have responded to the Action for M.E.’s survey on the severity and impact of M.E./CFS/PVFS.
06 April 2006
Sadly after six years Chris Clark has left Action for M.E.
03 April 2006
Next meeting of the All Party Parliamentary Group on M.E. to be open to the public.
31 March 2006
Action for M.E. has received over £500,000 from the Big Lottery Fund to establish a national M.E. Research Observatory.
29 March 2006
The Partnership for Research in CFS and M.E. (PRIME) has now put their Patient Evidence Database online.
27 March 2006
Students needed for a research project to examine gender and disability in entering the labour market.
14 March 2006
Given media reports of an impending NHS cash crisis, Action for M.E. (AfME) has been seeking reassurance about the continuation of the funding of NHS M.E. services and the commitment of Primary Care Trusts (PCTs) to the continuation of these services.
02 March 2006
Chronic Fatigue Syndrome and glandular fever link.
22 February 2006
Information about the 2006 campaign: M.E.- More than you know, is now available.
20 February 2006
AfME Patron, Lord Puttnam, receives BAFTA lifetime achievement award
08 February 2006
The Advisory Committee on Pesticides (ACP) disagree with the buffer zone recommendations of the Royal Commission on Environmental Pollution (RCEP).
02 February 2006
What do you think about the Government proposals to reform incapacity benefit?
23 February 2004
Clinical guidelines for the diagnosis and treatment of CFS/M.E. are to be developed by the National Institute of Clinical Excellence (NICE).
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