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Fundraiser of the week - Jade Turner

December 02, 2016

Our fundraiser of the week is Jade Turner, founder of Turner Go.After being inspired by the story of Beth French, who swam the English Channel to raise money and awareness of M.E.,…
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Chance for people with M.E. to shape Scottish benefits

December 02, 2016

The Scottish Government are looking for people who have applied for social security benefits to become part of a focus group that will help them design and test a new social security…
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Raising awareness with the Department of Work and Pensions

December 01, 2016

Action for M.E. is today hosting a training session for more than 80 work coaches employed by the Department of Work and Pensions (DWP) to raise awareness of the needs of people who…
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Bath Half Marathon - help us support people with M.E.

November 30, 2016

“It is important to raise awareness and to fundraise for research. It is important not to forget people living with this debilitating condition.”There are hundreds of reasons people…
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​New MEGA research website now live

November 30, 2016

A new website for the M.E./CFS Epidemiology and Genomics Alliance (MEGA) is now live, with lots of information about this potentially game-changing research project and the scientists…
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Fundraiser of the Week - Danny O'Donnell

November 25, 2016

Our fundraiser of the week is Danny O'Donnell, who is taking part in the Great North Run 2017 for us. Starting in Newcastle upon Tyne on September 10, the 13.1 mile Great North Run route…
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New Chair and Trustees welcomed to our Board

November 24, 2016

Announced at our AGM and conference on Friday, Action for M.E. is delighted to welcome Jonah Grunsell as our new Chair of the Board of Trustees. Jonah succeeds Alan Cook CBE, who joined…
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PhDs and postdoc M.E. research funding: apply now

November 23, 2016

Launching our new five-year strategy at our 2016 conference and AGM last week, we set out how we plan to improve the lives of people with M.E., inspire action at all levels, and invest…
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Why we are supporting the MEGA research project

November 22, 2016

In response to questions asked by our supporters and others affected by M.E., we would like to clarify our position on the M.E./CFS Epidemiology and Genomics Alliance (MEGA) research…
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Have your say on benefit sanctions today

November 21, 2016

The National Audit Office is currently looking at whether the Department for Work and Pensions (DWP) is using benefit sanctions effectively. If you have experience of benefit sanctions,…
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Improve, inspire and invest: our strategy for change

November 18, 2016

Launching our new five-year strategy at our Collaborating for change conference today, Action for M.E. asks how we can work better together to improve the lives of people with M.E.…
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Action for M.E. signs letter against £30 ESA cut

November 17, 2016

Action for M.E. has signed an open letter as part of the Disability Benefits Consortium arguing against a £30-a-week cut to Employment and Support Allowance (ESA) and Universal Credit…
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National Institutes of Health responds on M.E. lecture

November 16, 2016

The National Institutes of Health (NIH) has said that it “remains firmly committed to using scientific methods to uncover the biological mechanisms that cause M.E./CFS.” This is in…
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Watch our conference from home: just four days to go

November 14, 2016

Booking for our 2016 AGM and conference, Collaborating for change, has now closed - but even if you aren't able to make it, we hope that you'll still be able to watch the event from…
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Fundraiser of the week - Jane Marlene Lowe

November 11, 2016

Our fundraiser of the week is Jane Marlene Lowe, who is running one race a year to raise money and awareness of M.E.Jane, who has M.E. herself, said: “I am still on the road to recovery…
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Employment project nominated for second national award

November 10, 2016

Action for M.E.’s Support, Empower and Employ people with M.E. (SEE M.E.) project has been nominated for The Occupational Therapy Show Awards in the Occupational Therapy Innovation…
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2016 conference and AGM registration closes Friday

November 09, 2016

Registration for our 2016 conference and AGM closes this Friday at 5pm. Focusing on the importance of collaboration through presentations, Q&As and discussions, we will identify barriers…
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ME/CFS International Alliance protests Shorter lecture

November 09, 2016

Bringing together M.E. advocates and charity representatives from six countries, the M.E./CFS International Alliance has written jointly to the National Institutes of Health, protesting…
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Christmas Angels wanted: get in touch today

November 08, 2016

Could you be a Christmas Angel? Action for M.E.’s Christmas Angels project – now in its sixth year – enables people with M.E. to send Christmas cards to each other via the Action for M.E.…
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Celebrating SEE M.E. project success today in Bristol

November 07, 2016

"It is easy to find sympathy but much harder to find solid advice and knowledgeable support to help with resolving M.E.-related employment issues.” This is a situation that's familiar…
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Fundraiser of the week - Matt Robinson

November 04, 2016

Our fundraiser of the week is Matt Robinson, who is raising money and awareness of M.E. by growing a moustache.Talking about his reasons for supporting us, Matt said: “Having had family…
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New MEGA website to feature improved accessibility and engagement

November 03, 2016

The change.org site for the MEGA research project has been taken down while a new website dedicated to the project is being developed. This is following feedback that the Change.org…
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UK Government publishes Work, Health and Disability Green Paper

November 02, 2016

People affected by M.E. will soon have the chance to feed into a Government consultation on how employment prospects can be improved for people with disabilities or long term health…
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New FITNET trial announced for young people with M.E.

November 02, 2016

The University of Bristol has announced the launch of a new clinical trial, in which more than 700 children and young people with M.E. will take part. The trial will investigate whether FITNET-NHS…
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Action for M.E. respond to Scottish Government consultation

November 01, 2016

Informed by the experiences of people with M.E., Action for M.E. has responded to a consultation on social security in Scotland, outlining how welfare benefits provision can be improved…
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MEGA update: blogs by Profs Perry and Ponting

October 31, 2016

Prof Hugh Perry, Professor of Experimental Neuropathology, University of Southampton, and Chair of the MRC’s Neuroscience and Mental Health Board, has blogged and answered questions…
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Social world podcast: the reality of M.E.

October 28, 2016

"Imagine your world shrinking to a point so that all you see, day after day, is your bedroom, darkened because any light burns holes in your head. Any attempt to move is thwarted because…
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Fundraiser of the week - Northumberland Ghostbusters

October 28, 2016

Our spooky fundraiser of the week is the Northumberland Ghostbusters group, who are doing a night of ghost hunting to raise money for us this Saturday.The group will lead a paranormal…
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Got experience of M.E.? Take part in our new project

October 27, 2016

If you have experience of M.E. and would like to use your experiences to help support others in a positive and constructive way, then Action for M.E. has an opportunity for you.We are…
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Action for M.E. CEO attends IACFS conference

October 27, 2016

Joining Stanford University’s Dr Lily Chu and DePaul University’s Prof Leonard Jason, Action for M.E. Chief Executive Sonya Chowdhury will take part in a panel discussion on patient…
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New M.E. technologies: our AGM and conference

October 26, 2016

What new technologies might be used to unlock the biology of M.E.? That’s the question Dr Warwick Dunn will consider when he presents at Action for M.E.’s AGM and conference next month.Dr…
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Fundraiser of the week - Dan Henning

October 21, 2016

Our latest fundraisers of the week are Dan Henning and his Ride London 100 team who raised an amazing £3,520 for Action for M.E. in the Ride London this year. Dan chose to raise money…
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Post-exertional malaise: our latest research round-up

October 19, 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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Fundraiser of the week - John and Sonia

October 14, 2016

Our fundraisers of the week are John Gittings and Sonia J Johnson, who have collaborated to produce a book called Alberto Mouse that has raised £135 for us.The book follows the adventures…
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Registration open for our 2016 annual conference and AGM

October 12, 2016

Registration is open for our 2016 annual conference and AGM, which takes place from 10am to 4.30pm on Friday 18 November at Allen and Overy in London.Our conference this year will look…
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Calling all artists - InterAction needs you

October 11, 2016

Are you an artist, poet, writer, painter, photographer, crafter or cartoonist with work to show off?Our membership magazine InterAction has a section dedicated to showcasing arts and…
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Action for M.E. attends Disability Fight Back Seminar

October 10, 2016

Action for M.E. is today attending the Disability Fight Back Seminar hosted by Lord Low and Baroness Campbell at the Royal National Institute of Blind people (RNIB).Lord Low is Vice-Chairman…
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Sonya Chowdhury responds to ‘psychosomatic’ comment

October 10, 2016

Action for M.E. Chief Executive Sonya Chowdhury has challenged a comment posted on the British Medical Journal (BMJ) website which suggested that for M.E. patients, the condition is…
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Fundraiser of the week - Margaret Nightingale

October 07, 2016

Our fundraiser of the week is long-time Action for M.E. supporter Margaret Nightingale. Margaret and her husband Brian have been fundraising and supporting Action for M.E. for almost…
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M.E. in the limelight at Beauty Unseen

October 04, 2016

On Saturday 1 October around 100 people gathered for the first Beauty Unseen live event in Bristol. The show featured live music, dance, fashion and the sharing of real and personal…
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New employment resources for people with M.E.

October 03, 2016

Action for M.E. has updated its two key employment resources for people with M.E, using the knowledge and experience gained through our innovative SEE M.E. pilot project.Our 48-page M.E.…
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Fundraiser of the week - Vikki Howell

September 30, 2016

Our fundraiser of the week is Vikki Howell, who has had a collection tin of ours in her parent’s newsagents in Norwich since 2009.Her recent donation of £53.23 took the total she’s…
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Clear need for M.E. research investment, says report

September 29, 2016

Research into M.E./CFS represents less than 1% of all active grants given by UK mainstream funding agencies, highlights a new report launched at today's UK CFS/M.E. Research Collaborative…
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MEGA research for M.E./CFS: pledge your support

September 28, 2016

Please add your voice to support a significant biomedical research project to investigate the biology of M.E.Launched at today's UK CFS/M.E. Research Collaborative conference, the M.E./CFS…
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Action for M.E. attends Millions Missing event in Bristol

September 27, 2016

Action for M.E. attended the Millions Missing event in Bristol today, one of a number taking place across 25 global cities.The demonstration was attended by people with M.E., and the…
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Third CMRC conference starts tomorrow

September 27, 2016

Tomorrow marks the first day of the third annual CMRC conference, which will be held on Wednesday 28 and Thursday 29 September 2016 at the Novotel, Newcastle Airport.Our plan is to…
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​Winter is coming: the flu vaccine and M.E.

September 26, 2016

As the 2016-17 flu season approaches, we know that some people with M.E. and carers have questions about the flu vaccination available at pharmacies and GP surgeries.Action for M.E.…
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Preliminary analysis of newly released PACE data

September 23, 2016

Working with statistics professors from the University of California and Columbia University, M.E. patient Alem Matthees has published his preliminary analysis of the anonymised PACE…
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​Latest ESA statistics show 56% success rate on appeal

September 21, 2016

Statistics published this month show that 56% of decisions made by the Department of Work and Pensions (DWP) regarding Employment and Support Allowance (ESA) are overturned in favour…
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M.E. in the media: new challenges for Jude and Beth

September 20, 2016

In the news this month are two women with M.E. celebrating their achievements. Jude Adams, who has lived with M.E. for seven years, has released her first album, supported by Arts Council…
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Fundraiser of the week – Neil Robinson

September 16, 2016

"Everyday I sit helplessly and watch Claire in her constant struggle with the pain and distress caused by M.E. This is an invisible, silent condition that can only be truly appreciated…
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Action for M.E. responds to independent PIP review

September 16, 2016

Action for M.E. has responded to the second independent review of the Personal Independence Payment (PIP) assessment. We are hugely grateful to the more than 300 people with M.E. who…
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​InterAction 93 is now out: got your copy?

September 14, 2016

The autumn 2016 issue of our membership magazine InterAction hits doorsteps this week. It’s packed with the latest M.E.-related news and features, campaigns and research updates, as…
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Fundraising campaign asks: what's your M.E. marathon?

September 14, 2016

Our new What’s your M.E. marathon? campaign celebrates people with M.E. who take on personal fundraising challenges that, to them, feel like a marathon - even if no running is involved. Rachel…
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PACE data released to M.E. patient via FOI request

September 13, 2016

Queen Mary University of London (QMUL) announced on Friday that it has released anonymised data from the PACE trial to a patient with M.E. who requested it under the Freedom of Information…
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Fundraiser of the week: Rob Norris

September 09, 2016

Lucy is almost 15 years old and has M.E. She hasn't been able to go to school for nearly two years."Lucy has to make decisions every day as to how she will spend her limited energy,"…
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Lloyds Bank staff learn about M.E.

September 08, 2016

Thousands of Lloyds Bank staff have had the opportunity to learn about M.E. and its impact, thanks to a story highlighting our Support, Empower and Employ people with M.E. (SEE M.E.)…
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Control of welfare benefits in Scotland: have your say

September 07, 2016

The Scottish Government is consulting with people across Scotland about how best to use the new social security powers devolved to it by the Scotland Act 2016. These powers include…
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Millions missing: add your voice to the campaign

September 07, 2016

A global M.E.-awareness event is planned for Tuesday 27 September, and you can get involved. Building on the success of protests that took place across the world in May and June, the Millions…
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Epic swim challenge for supporter Beth French

September 06, 2016

Action for M.E. supporter Beth French is set to embark on a huge challenge: the Oceans Seven, a gruelling series of seven long-distance, open water swims.Beth, who has recovered from…
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Collaborating for change: conference booking now open

September 05, 2016

You are warmly invited to join Action for M.E. for our conference and AGM in London in November, focusing on the importance of collaboration. Using our new five-year strategy to inspire…
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New peer-mentoring support network seeks volunteers

September 05, 2016

Mentor M.E. is Action for M.E.’s new volunteer peer-mentor support network for people affected by M.E. in Scotland, funded by the Health and Social Care Alliance Scotland (the Alliance)…
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Fundraiser of the week – Joan White

September 02, 2016

Our fundraiser of the week is Joan White, who is taking on the London Duathlon for us.Joan, plus a stalwart group of her friends, will compete either in the half London duathlon (5km…
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​New research: distinct biological differences in M.E.

September 02, 2016

Findings of research facilitated by the Open Medicine Foundation could be set to rock the world of medicine, writes Action for M.E. Volunteer Pharmacist Emily Beardall.Published online…
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Highlighting M.E. at the Beauty Unseen event

September 02, 2016

Last month, we asked people with M.E. to submit their designs for a handbag that will be used to collect donations for us at the Beauty Unseen event in October. Nine people with experience…
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Will your MP be at next week's APPG on M.E. meeting?

August 31, 2016

This week Action for M.E. has been contacting members of the All Party Parliamentary Group on M.E. to encourage them to attend its Annual General Meeting next week.Taking place on Wednesday…
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Professional versus peer support: August research round-up

August 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…
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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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