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Fundraiser of the week - Myck Beddall

August 26, 2016

Our fundraiser of the week is Myck Beddall, who is taking on the 84k Thames Path Challenge 2016 for us.The challenge involves walking the length of a double marathon from Oxford to…
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Fundraiser of the week - Oli Jones

August 19, 2016

Our fundraiser of the week is Oli Jones, who is undertaking a 105 mile coast to coast race in Scotland for us.The race will involve running, cycling and kayaking through hilly terrain.Talking…
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Tribunal rules in favour of releasing PACE trial data

August 17, 2016

A tribunal has ruled that anonymised data from the PACE trial should be released after an appeal was lodged against a prior ruling.The ruling orders Queen Mary University of London…
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Neurological Alliance publishes report on primary care

August 15, 2016

The Neurological Alliance, of which Action for M.E. is a member, have published their report Neurology and primary care: Improving the transition from primary care for people with neurological…
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Fundraiser of the week - Rachel Gill

August 12, 2016

Our fundraiser of the week is Rachel Gill, who is running the English Half Marathon on September 18 because her nephew has had M.E. for two years.Talking about the effect the illness…
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Welfare support line open again from next week

August 11, 2016

Action for M.E.’s Welfare Advice and Support Service will re-open on Wednesday, August 17 with new opening hours.The service, which provides free confidential advice on welfare benefits,…
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Help us raise awareness for Severe M.E. Day today

August 08, 2016

Today (August 8) is Severe M.E. Day and to mark the event we’re asking people to help us raise awareness of severe M.E.Started by the 25% M.E. Group, Severe M.E. Day aims to raise awareness…
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Fundraiser of the week - Jude Adams

August 05, 2016

Our fundraiser of the week is Jude Adams, who’s releasing her debut album and donating 10% of its sales to Action for M.E.Talking about her crowdfunded album This Girl, This Woman,…
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Do you claim PIP? Share your experience

August 04, 2016

The Department for Work and Pensions (DWP) has issued a call for evidence on the Personal Independence Payment (PIP) for its second independent review of the benefit.Action for M.E.…
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New theory on neuro: our latest research round-up

August 03, 2016

Each month, Action for M.E. Volunteer Pharmacist Emily Beardall explains some of the recently published research studies on M.E.Please note this is not an exhaustive list – we have…
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Action for M.E. needs budding designers

August 01, 2016

Are you a budding designer? Could you use your skills to help highlight M.E.?Action for M.E. is thrilled to be taking part in Beauty Unseen, an event that aims to raise awareness of…
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PIP change could make claiming easier for people with M.E.

August 01, 2016

A new legal judgement could make it easier for people with M.E. to claim Personal Independence Payment.The judgement has ruled that consideration should not only be given to whether…
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Fundraiser of the week - Julian Head

July 29, 2016

Our fundraiser of the week is Julian Head, who’s taking part in the Prudential RideLondon – Surrey 100 Mile cycling event this weekend.Julian is putting himself through the challenge…
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Bringing M.E.-friendly theatre to your sofa

July 27, 2016

Going out to the theatre is just one of the things that some people with M.E. miss out on as a result of their symptoms. But what if there was a way of bringing the play to you?“As…
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London Marathon 2017 - your chance to support our work

July 26, 2016

Applications are still open for Action for M.E.’s 2017 London Marathon places.Our team in 2016 raised an incredible total of £26,600. We’re reliant on our fundraisers who help to make…
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Action for M.E. informs report on welfare benefit entitlement

July 25, 2016

Clearer information, a more consistent approach to supporting evidence and improved communication with claimants are some of the recommendations made in a report on welfare benefit…
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Fundraiser of the week - Mark Cockburn

July 22, 2016

Our fundraiser of the week is Mark Cockburn, who is attempting to cycle 100 miles to raise money for us and awareness of M.E.By taking place in the Prudential RideLondon-Surrey 100,…
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How can the Government improve support for carers?

July 22, 2016

The Department of Health is calling for evidence from informal carers who look after family members, friends, neighbours or others on how they can improve support for carers.Responses…
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Government encourages more high-quality M.E. research proposals

July 20, 2016

The Government has responded to a petition asking it to fund more research into M.E./CFS by saying that research into the illness is currently a priority area for the Medical Research…
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Has your social care assessment been delayed?

July 19, 2016

Healthwatch England has launched an investigation into how long it takes disabled and unwell people to be assessed for social care support after it emerged that some people in Cambridgeshire…
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Fundraiser of the week - Siobhan Duff

July 15, 2016

Our fundraiser of the week is Siobhan Duff, who is dying her hair blue to raise money for us.Siobhan and her friends were inspired to raise money for us because their friend Niamh has…
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Highlighting lack of support for people with M.E. in Wales

July 15, 2016

Action for M.E. supported an event hosted by M.E. Support in Glamorgan (MESIG) and sponsored by Julie Morgan AM at the National Assembly for Wales this week.Christalla Bailey, Vice…
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Our funded research: latest muscle dysfunction and immune findings

July 12, 2016

Two Newcastle University research studies funded by Action for M.E. have concluded, having investigated immune responses and muscle dysfunction in people with M.E.Each research team…
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Fundraiser of the week - Beth French

July 08, 2016

Our fundraiser of the week is Beth French, who is swimming the seven sea channels in one year.Speaking about her endeavour, Beth said: “Tackling the Oceans 7 means dealing with vicious…
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M.E. in the media roundup

July 06, 2016

A growing body of research is providing more evidence that M.E./CFS is “absolutely a real, physiological illness,” says Dr. Alison Bested, a hematological pathologist who has spent…
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Minister Alistair Burt responds to question on M.E. and social care

July 05, 2016

Action for M.E. volunteer Catherine Hale attended a roundtable discussion yesterday where she questioned Alistair Burt, Minister for Social Care. The Independent Living Strategy Group,…
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Mass participation event for disabled people launched in London

July 04, 2016

Action for M.E. has the chance to secure places for Parallel London, a new mass participation event in London designed for people with disabilities, and we’d like to found out if it…
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Fundraiser of the week - Dana Boundy

July 01, 2016

Our fundraiser of the week is Dana Boundy, who's doing a sponsored skydive for us this weekend.Talking about her personal reasons for supporting us, Dana said: "This is a cause close…
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Neurological Alliance seeking views of people with M.E.

July 01, 2016

The Neurological Alliance is asking people with M.E. and other neurological illnesses to help them influence policy makers and service providers by filling out their new patient experience…
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New five year strategy announced at speaker's house event

June 30, 2016

More than 100 guests gathered at Speaker’s House yesterday evening to hear how Action for M.E. will take action to end the ignorance, injustice and neglect experienced by people with…
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Speaker's House event to thank and influence tonight

June 29, 2016

This evening Action for M.E.’s Chair of Trustees, Alan Cook CBE, will host a reception at Speakers House, by kind permission of the Speaker of the House of Commons, the Right Honourable…
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June Research Round-up

June 27, 2016

Each month, Action for M.E. Volunteer Pharmacist Emily Beardall explains some of the recently published research studies on M.E.Please note this is not an exhaustive list – we have…
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Your chance to help shape the new Independent Living Fund for Scotland

June 27, 2016

People with M.E. and other disabilities living in Scotland are being asked what policies and criteria they would like the new Independent Living Fund for Scotland to include when it…
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Fundraiser of the week - Trevor Kay

June 24, 2016

Our fundraiser of the week is Trevor Kay, who is entering the Ride London 100 mile cycle ride for Action for M.E.Talking about his own experiences of M.E., Trevor said: “In early 1997,…
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Taking action to raise awareness of M.E. in Wales

June 24, 2016

Action for M.E. is working with M.E. Support in Glamorgan (MESIG) to raise awareness of M.E. among parliamentarians and policy-makers in Wales.Along with MESIG’s Christalla Bailey,…
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​Greater Manchester Neurological Alliance launches

June 23, 2016

Next week sees the launch of the Greater Manchester Neurological Alliance (GMNA), where Action for M.E. will highlight the impact of M.E. and the importance of working collaboratively…
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Fundraiser of the week - Michelle Conner

June 17, 2016

Our fundraiser of the week is Michelle Conner, who is running the Great North Run for us this September.Michelle hopes to raise £350 for us and to help increase awareness of the illness.…
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Ministers answer parliamentary questions on M.E.

June 14, 2016

This week, two written parliamentary questions have been answered on M.E. The first was tabled by Alex Cunningham MP, and arose as a result of Mr Cunningham attending the recent APPG…
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Government questioned by UN over austerity measures

June 14, 2016

The UK government is being questioned by a United Nations committee this week regarding its austerity measures and approach to anti-discrimination.From 6 to 24 June, the Committee on…
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Fundraiser of the week - Lucy and Phil

June 10, 2016

Our fundraisers of the week are Lucy and Phil Flemming, who recently took part in a sponsored skydive to raise money for us.The pair have raised nearly £1,000 through their terrifying…
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Prof Ron Davis' severe M.E. study: initial findings presented

June 08, 2016

Prof Ron Davis presented new findings from his big data study on severe M.E. at last week’s Invest in ME research conference, reports #MEAction.“Davis’s preliminary data show serious…
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Taking care of carers: Carers Week 2016

June 06, 2016

“My husband’s life has had to change as drastically as my own in order to accommodate my condition, and over the years he has often had to act as my carer. Our life as a couple has…
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Fundraiser of the week - Alan and Malcolm

June 03, 2016

Our fundraiser of the week is Alan and his brother Malcolm, who are taking part in the Tough Mudder Scotland 2016 challenge to raise money for us.The gruelling and dirty event sees…
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M.E. in the media: the double whammy of isolation

June 02, 2016

“I only see one or two people for an hour or two at most – I can't cope with any more than that,” says Tisha Bratt, who has had M.E. for 22 years. “My husband is wonderful. We met after…
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Brain changes and killer cells: research round-up

June 01, 2016

Each month, Action for M.E. Volunteer Pharmacist Emily Beardall explains some of the recently published research studies on M.E.Please note this is not an exhaustive list – we have…
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New self-advocacy guide for people with M.E. in Scotland

June 01, 2016

More than 100,000 Scots live with a long-term neurological condition, including M.E. Like many other groups with physical health problems, they have no statutory right to an independent…
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Fundraiser of the Week: ultra marathon runner Darren Philips

May 27, 2016

"My Mum Patricia has suffered with M.E. for many years. I want to help rid the world of M.E. so it cannot cause anyone any more suffering or pain," says our Fundraiser of the Week, Darren…
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Big data and biomarkers at the CMRC 2016 conference

May 27, 2016

The programme for the UK CFS/M.E. Research Collaborative's third annual science conference has been confirmed, with a focus on big data and biomarkers.Speakers on day one include: Dr…
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Wellbeing, choice and control: what's your social care experience?

May 26, 2016

The Independent Living Strategy Group is asking people with M.E. to share their experiences of social care and support in order to present evidence to the Government.Baroness Jane Campbell,…
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Tell us about the impact of the 20m PIP rule

May 24, 2016

Minister for Disabled People Justin Tomlinson was presented with evidence last week, including the experiences of people with M.E., highlighting the impact of the 20 metre Personal…
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M.E. highlighted at new Phenome Centre launch event

May 23, 2016

M.E. was highlighted as a field that could benefit from world-class facilities as the University of Birmingham’s new £8million Phenome Centre at its official launch today.Clare Ogden,…
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Highlighting M.E. on the global health agenda

May 23, 2016

Action for M.E. Chief Executive Sonya Chowdhury is in Geneva today attending the 69th World Health Assembly at the United Nations.This event brings together world leaders, health ministers…
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Fundraiser of the week - Mia and Becky

May 20, 2016

Our fundraiser of the week is Mia and her aunt Becky Legh, who took part in a superhero fun run in Milton Keynes this week for us.Mia dressed as speedy superhero The Flash and Becky…
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Welfare benefits advice and information: important news

May 20, 2016

Action for M.E.’s Welfare Rights Line is temporarily closed while we recruit a new advisor. Our current advisor, Sarah, is moving on for a new role with another organisation after seven…
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London Marathon - over £26,600 raised

May 18, 2016

The London Marathon is the largest annual fundraising event on the planet, and Action for M.E. have been proud to support all 13 of our runners that took part this year.Together our…
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MEGA new M.E. research project: first of its kind in UK

May 16, 2016

A new alliance of researchers, the M.E./CFS Epidemiology and Genomics Alliance (MEGA), has come together to advance M.E. research.Last year's UK CFS/M.E. Research Collaborative (CMRC)…
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M.E. in the media: raising awareness, reducing isolation

May 16, 2016

We’re just over half way through M.E. Awareness Month 2016, and are delighted that so many local and regional newspapers are helping to spread our message: don’t ignore M.E.Our media…
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Fundraiser of the week - Princess Leia

May 13, 2016

Our fundraiser of the week is Charlotte Mookpixie, who dressed as Princess Leia from Star Wars this week and gained the attention of Luke Skywalker himself, Mark Hamill.Charlotte tweeted…
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​Latest research projects announced, plus new funding available

May 13, 2016

Action for M.E. is delighted to announce that we are funding two new research studies totalling £42,000, made possible by donations to our Clare Francis Research Fund and match-funding…
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​Presenting evidence to Isle of Man government committee

May 13, 2016

Action for M.E. Chief Executive Sonya Chowdhury will give evidence at Tynwald, the parliament of the Isle of Man, this morning.She has been invited to do so by the Social Affairs Policy…
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Watch our new awareness raising film 'What is M.E.?'

May 12, 2016

How much do you know about M.E.?As part of our work for International M.E. Awareness Day, Action for M.E. has produced a new video in which our chief medical advisors Prof Julia Newton…
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UK M.E./CFS Biobank launches today, M.E. Awareness Day

May 12, 2016

Action for M.E.’s Head of Communications and Policy, Clare Ogden, will join scientists, doctors and patients at the London School of Hygiene and Tropical Medicine (LSHTM) this evening…
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APPG on M.E. invites MPs to learn more about M.E.

May 11, 2016

The All Party Parliamentary Group (APPG) on M.E. hosted a drop-in session today to launch its new information resource for MPs.Supporting your constituent with M.E. features key information…
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M.E. and social care: new film for professionals

May 11, 2016

As part of our M.E. Awareness Week campaign, our new film M.E. and social care aims to share information that will help social care professionals better support people with M.E.The…
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M.E. in the media: M.E. Awareness Month so far

May 10, 2016

Already this M.E. Awareness Month our media case studies have appeared in the local press and on newspaper websites across the UK. This year our media work is focusing on the isolation…
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Don't ignore M.E. this M.E. Awareness Week: take action now

May 09, 2016

It's M.E. Awareness Week, and you can take action right now to reduce the isolation experienced by so many people with M.E.“Lack of understanding is very isolating for me. It's just…
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Fundraiser of the week - Jazz Doughty

May 06, 2016

Our fundraiser of the week is Jazz Doughty, who is doing a sponsored swim in the cold ocean around Britain.Jazz, who cares for someone who has M.E., said: “I'm hoping to raise a little…
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Disability employment gap inquiry: Action for M.E. responds

May 06, 2016

Action for M.E. has responded to the Work and Pensions Committee's inquiry into the Government’s commitment to halve the "disability employment gap" – the difference in employment rates…
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It's polling day: has your candidate seen our M.E. manifesto?

May 05, 2016

"Every person with M.E. – wherever they live – should have access to informed support. Will you help transform the lives of people with M.E. and their families?"That's the question…
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CEO blog: walking through this world together

May 01, 2016

As we begin M.E. Awareness Month, our Chief Executive Sonya Chowdhury asks what single message the M.E. community can get behind to bring about effective change.“Diversity is about…
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Want your MP to understand M.E. better?

April 29, 2016

The All Party Parliamentary Group (APPG) on M.E. will host an awareness-raising drop-in at Parliament during M.E. Awareness Week.This event offers MPs the opportunity to better understand…
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Fundraiser of the week - Bromley VoluntEARS

April 29, 2016

Our fundraiser of the week is the Bromley VoluntEARS group, who are walking 23 miles along the Thames Path for Action for M.E. on May 25.Group member Jude, whose Mum became ill with…
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Comparing M.E. and MS: April research round-up

April 28, 2016

Each month, Action for M.E. Volunteer Pharmacist Emily Beardall explains some of the recently published research studies on M.E.Please note this is not an exhaustive list – we have…
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M.E. manifesto: has your candidate pledged their support?

April 26, 2016

We have been sending our M.E. matters now manifestos for Scotland, Wales and Northern Ireland to all candidates standing in the upcoming elections. Has yours pledged their support?Each…
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Don't ignore M.E.: our new leaflet and poster

April 25, 2016

New awareness-raising materials are now available to download and print from our website, to coincide with the beginning of M.E. Awareness Month this Sunday.Our Don't ignore M.E. poster…
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M.E. in the media: immune system confused by bacteria?

April 25, 2016

Anorexia, Irritable Bowel Syndrome (IBS) and chronic fatigue syndrome (CFS) may have similar pathologies, and be caused by bacteria which confuse the immune system, writes Sarah Knapton…
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Please support our London Marathon runners this Sunday

April 22, 2016

This Sunday will see this week's fundraisers of the week running 26 miles to support people with M.E.Katy Fallon, Leigh Hovey, Andy Leamon, Andrea Bellanti, Fraser Claughton, George…
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Applications now open for Chair of Board of Trustees

April 22, 2016

Action for M.E. is inviting applications for Chair of our Board of Trustees to succeed Alan Cook CBE, whose second three-year term of office ends in November this year. Alan joined…
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Tribunal hearing re release of PACE data starts today

April 20, 2016

The First-Tier Tribunal (Information Rights) will today hear Queen Mary University of London (QMUL)’s appeal against the Information Commissioner’s recent decision regarding the release…
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Daniel Zeichner MP chairs policy roundtable into social care for M.E.

April 19, 2016

This afternoon the All-Party Parliamentary Group (APPG) on M.E. is hosting a policy roundtable as part of the inquiry into the shocking lack of social care provision for people with…
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M.E. in the media: misnomers, poverty and disabled darts

April 18, 2016

The latest contributor to the Guardian’s ‘What I’m really thinking’ series is a person with M.E. The piece explores common misconceptions about the illness, as well as issues with the…
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Fundraiser of the week - Tom Martin

April 15, 2016

Our fundraiser of the week is Tom Martin, who is running the Rock ‘N‘ Roll Marathon Liverpool for us next month.Tom, who has built himself up to being physically active again after…
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InterAction 92 is out this week

April 11, 2016

The spring 2016 issue of our membership magazine, InterAction, is published this week. It’s packed with the latest M.E.-related news, campaigns and research updates, as well as features,…
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Fundraiser of the week - Laura Matthews

April 08, 2016

Our fundraiser of the week is Laura Matthews, who is severely affected by M.E. and has made the decision to have her very long hair cut off.Proving that you can still find ways to raise…
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Election campaign: our M.E. Matters Now manifesto

April 08, 2016

Do you live in Wales, Northern Ireland or Scotland? Can you help push M.E. up the political agenda by sharing our campaign manifesto? We have produced an election manifesto for each…
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APPG to host awareness-raising drop-in: invite your MP

April 07, 2016

Notes from the most recent meeting of the All-Party Parliamentary Group (APPG) on M.E. have been published on our APPG page.Topics for discussion at the 17 March meeting included an…
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Our Speakers House reception in June

April 06, 2016

Action for M.E. is delighted that our Chair of Trustees, Alan Cook CBE, will host a reception at Speakers House in June by kind permission of the Speaker of the House of Commons, the…
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M.E. matters now: Scotland, Wales and Northern Ireland elections

April 04, 2016

Do you live in Wales, Northern Ireland or Scotland? Can you help push M.E. up the political agenda by sharing our campaign manifesto?We have produced an election manifesto for each…
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M.E. in the media: Montoya and Hornig on research

April 04, 2016

Published online this morning, an interview with Profs Jose Monyota and Mady Hornig in the Guardian is attracting considerable interest. The article gives an overview of research into…
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Share you story to raise awareness of M.E.

April 01, 2016

Action for M.E. joins other charities and individuals across the world putting plans in place to focus on raising awareness of M.E. throughout M.E. Awareness Month in May, including…
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Fundraiser of the week - Leigh Hovey

April 01, 2016

Our fundraiser of the week is Leigh Hovey, who is running the Virgin London Marathon for us.Leigh decided to support us by raising money through running the London Marathon after his…
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Potential M.E. biomarkers: research round-up

March 31, 2016

Each month, Action for M.E. Volunteer Pharmacist Emily Beardall explains some of the recently published research studies on M.E.Please note this is not an exhaustive list – we have…
Read more >>


BBC Panorama on disability benefits: can you help?

March 31, 2016

The BBC’s Panorama programme will be looking at disability benefits and the impact the changes are having on people’s lives.They are looking for case studies and are hoping to film…
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The Equality Act 2010: the impact on disabled people

March 30, 2016

Last week the House of Lords Select Committee on the Equality Act 2010 and Disability published its report, citing some of Action for M.E.'s written evidence.To inform our response…
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M.E. in the media: ways of living with the illness

March 29, 2016

Three M.E.-related stories appeared in the media over the Easter weekend.Firstly, the Daily Mail interviewed author Shirley Conran on surviving M.E. “When something happens, whether…
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Fundraiser of the week - Katy Fallon

March 24, 2016

Our fundraiser of the week is Katy Fallon, who raised £5,175 by hosting a fundraising dinner on Monday at The Imperial, along with an auction and raffle.Katy is running the London Marathon…
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New self-management resource for people with M.E. launched

March 24, 2016

Our new self-management resource 'Taming the Gorilla - A Guide to Living and Learning With M.E.' is now available to download free from our website.Launched last night as part of the…
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Update on QMUL and sharing research data

March 24, 2016

The Information Commissioner’s Office (ICO) has made a ruling in response to a request made to Queen Mary University London (QMUL) under the Freedom of Information Act.This ICO ruling,…
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CEO blog: Prof George Davey Smith on the Grand Challenge

March 23, 2016

This month our Chief Executive Sonya Chowdhury invites Prof George Davey Smith to blog about the Grand Challenge, a new project launched at last year’s UK CFS/M.E. Research Collaborative…
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Alliance funds our new five-year project

March 22, 2016

Action for M.E. is delighted to announce that the Health and Social Care Alliance Scotland (ALLIANCE) has agreed to fund our five-year peer-mentoring project in full.Our project is one…
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