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New project to improve health and social care in Scotland launched

March 24, 2017

Action for M.E. is launching a new project in Scotland to work with health and social care professionals.Inform M.E. Scotland is a 12-month, Scottish Government-funded project that…
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Children’s Services Team to pick up AYME survey data

March 23, 2017

We’d like to reassure family members who’ve filled in a survey into false accusations against families of young people with M.E/CFS launched by The Association of Young People with…
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Experiences of PIP claimants needed for new inquiry

March 21, 2017

Action for M.E. has been asked to submit evidence to the Work and Pensions Committee inquiry into Personal Independence Payment (PIP).Frank Field MP, Chair of the Committee, wrote to…
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GPs enthusiastic to learn more about M.E.

March 20, 2017

Dozens of GPs admitted that while it’s hard to know how to help people with M.E. in their areas, they were all keen to learn more about the illness and how they could help people affected…
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Fundraiser of the week - Bill Haywood Smith

March 17, 2017

Our fundraiser of the week is Bill Haywood Smith, who ran the Bath Half Marathon for us last weekend because the half marathon equalled a mile for every year his daughter has had M.E.Bill…
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Survey highlights need for greater understanding of M.E. among GPs

March 17, 2017

Over 48% of people with M.E./CFS in the UK who took part in a recent survey say they wouldn’t trust their GP to give them information on their condition.The report, Tired of explaining:…
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Letter to Psychological Medicine re the PACE trial

March 15, 2017

This week an open letter, signed by a number of clinical and research professionals, and charity representatives, has been sent to the journal, Psychological Medicine. It asks the journal’s…
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Action for M.E. launches new Children’s Services Team

March 14, 2017

Action for M.E. is pleased to announce the launch of our new Children’s Services Team.Following mutual agreement with the Board of Trustees of the UK charity, the Association of Young…
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Fundraiser of the week - Tania Parfitt

March 10, 2017

Our fundraiser of the week is Tania Parfitt, who will be walking 100km in August from Eastbourne to Arundel along the South coast of England in aid of one of her friends who has M.E.Tania…
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Impact of M.E. highlighted in Welsh Assembly

March 10, 2017

The impact of M.E. has been highlighted in the Welsh Assembly after Action for M.E. met with North Wales Assembly Member Mark IsherwoodMr Isherwood challenged the First Minister in…
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Action for M.E. responds to 2017 budget

March 09, 2017

As a member of the Disability Benefits Consortium, Action for M.E. believes that yesterday’s budget by Chancellor Phillip Hammond was a missed opportunity to put a stop to damaging…
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Free prescriptions campaign for long-term conditions launched

March 08, 2017

The Prescription Charges Coalition has launched a survey looking at the ways in which prescription charges affect the lives of people in England with long-term conditions such as M.E.Since…
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Ask your MP to oppose PIP changes and ESA cuts

March 07, 2017

Two motions been put forward in parliament to annul the recently announced changes that will reduce the number of people entitled to Personal Independence Payment (PIP) and the upcoming…
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Fundraiser of the week - Peter Vaiders

March 03, 2017

Our fundraiser of the week is Peter Vaiders, who is running the London Marathon for us.Talking about his reasons for supporting us, Peter said: “Having felt poorly for a number of years…
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Working with Naidex to raise awareness of M.E.

March 02, 2017

This month Action for M.E. will join forces with Naidex, Europe's biggest and most far-reaching event for trade, professionals and consumers dedicated to the care, rehabilitation and…
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Survey into false accusations against families of young people with M.E/CFS launched

March 02, 2017

The Association of Young People with M.E. (AYME ) has asked us to highlight that they have launched a survey to shine light on the real impact of false accusations against families…
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Information and support line - new opening hours

March 01, 2017

Due to staff shortages our information and support line will be open from 11am until 3pm until further notice.The service is staffed by our Information and Support Officers, who are…
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Fundraiser of the week - Class 9ML

February 24, 2017

Our fundraiser of the week is class 9ML from Notting Hill and Ealing High School, whose recent fundraising has raised an incredible £507 to support our work.Each class has a designated…
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Educating GPs about M.E. at top neurology conference

February 24, 2017

Action for M.E. will continue educating GPs across the UK by attending the Royal College of GPs’ neurology conference next month.Around 80 qualified and trainee GPs are expected to…
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Help us raise another record-breaking total in the Ride London 100

February 23, 2017

Last year a team of 13 Action for M.E. fundraisers took on the Ride London 100, a challenging 100-mile cycle course, to raise our best ever total of £10,661 in support of our work.This…
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Research finds link to dysfunctional immune system

February 22, 2017

There has been considerable buzz this week around the news that scientists in Australia have found a link between M.E. and a dysfunctional immune system.Results from the work being…
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Fundraiser of the week - Karen Risidore

February 17, 2017

Our fundraiser of the week is Karen Risidore, who is taking part in the Walk with M.E. event this year.The idea behind Walk With M.E. is for participants to walk a total of 1 million…
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Highlighting the need for greater understanding of M.E.

February 17, 2017

Action for M.E. has submitted its response to the Government’s consultation on work and disability, Improving lives: Work, Health and Disability Green Paper, representing the views…
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Fundraiser of the week - Susan and Brian

February 10, 2017

Our fundraisers of the week are Susan and Brian, who are using their wedding to raise money for us and awareness of M.E.Talking about their reasons for supporting us, the pair said:…
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Take part in the Big Benefits Survey

February 07, 2017

The Disability Benefits Consortium (DBC) has just opened its Big Benefits Survey, which asks disabled people to share their experience of the benefits system. People with M.E. are encouraged…
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Fundraiser of the week - Georgia Pearce

February 03, 2017

Our fundraiser of the week is Georgia Pearce, who organised a Christmas jumper day at Westbury-On-Trym Primary Care Centre.Georgina and the other staff at the primary care centre dressed…
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Evidence for benefit cuts is "ambiguous at best"

February 03, 2017

Cuts to disability benefits including Employment and Support Allowance (ESA) should be postponed until the Government provides more information on how it plans to support claimants…
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Raising awareness of M.E. at Naidex care and disability event

January 31, 2017

This March will see Action for M.E. joining forces with Naidex, Europe's biggest and most far-reaching event for trade, professionals and consumers dedicated to the care, rehabilitation…
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Could you benefit from peer mentor support?

January 31, 2017

Having recruited mentors for our peer mentor project in Scotland, Action for M.E. are now looking for people living with M.E. who would like to have peer mentor support from others…
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Fundraiser of the week - Natalie Heron

January 27, 2017

Our fundraiser of the week is Natalie Heron, who is organising a large scale sponsored walk event with her friend Salli Murray.The idea behind Walk With M.E. is for participants to…
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Work, health and disability survey: thank you!

January 23, 2017

We would like to say a huge thank you to everyone who participated in our Work, Health and Disability survey. The survey attracted a brilliant reaction, with more than 600 people responding…
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Fundraiser of the week - Caroline Skinner

January 19, 2017

Our fundraiser of the week is Caroline Skinner, who is running the Vitality Bath Half Marathon for us on Sunday 12 March.Explaining her reasons for wanting to support us and help people…
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Fundraiser of the week - Lynsey Gow

January 13, 2017

Our fundraiser of the week is Lynsey Gow, who is doing a year of “crazy things” on the lead up to her 40th Birthday and raising funds for M.E. as she goes.Among the things Lynsey will…
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Help shape DWP policy at London disability event

January 12, 2017

Would you like the chance to share your experience of employment and benefits to inform future policies of the Department of Work and Pensions (DWP)?The Disability Benefits Consortium…
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Fundraiser of the week - Simon Dooley

January 06, 2017

Our fundraiser of the week is Simon Dooley, who held a charity night at The Clarendon Showtel and Fosses Theatre in Blackpool this week.The charity night, which included performances…
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Bath Half Marathon - help us support people who have M.E.

January 03, 2017

Do you know anyone looking to get fit this new year? Are there any runners in your family, your workplace or among your friends willing to help make our work possible in 2017?Through…
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We could not achieve what we do without you: thank you

December 23, 2016

As 2016 draws to a close, Action for M.E. staff, Trustees and volunteers extend huge gratitude to all those who join us to end the ignorance, injustice and neglect experienced by people…
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Fundraisers of the Week: too many to name!

December 23, 2016

We want to say a huge thank you to everyone who has supported Action for M.E.'s 2016-2017 Research Appeal so far, and are honouring all of them as our Fundraisers of the Week.Through…
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December research news: biobank, CMRC report and more

December 21, 2016

Selected presentations from this year's UK CFS/M.E. Research Collaborative (CMRC) conference are now available to read in a draft overview - a full report is expected soon. The CMRC…
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Fundraiser of the week - Linda Hammick

December 16, 2016

Our fundraiser of the week is Linda Hammick, who is running the Bath Half Marathon 2017 for Action for M.E.Linda has decided to raise money for us because she has personal experience…
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M.E. and social care inquiry: can your MP attend?

December 16, 2016

Could you tell your MP about an upcoming meeting of the All-Party Parliamentary Group (APPG) on M.E. and encourage them to attend?Action for M.E. is contacting parliamentarians to do…
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Christmas 2016 InterAction out now

December 15, 2016

The Christmas 2016 issue of our membership magazine InterAction is out now. Packed with the latest M.E.-related news and features, as well as campaigns and research updates, medical…
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Mentor M.E. peer support project needs volunteers

December 14, 2016

Our Mentor M.E. peer support project is still looking for participants, both as service users and as mentors. The Mentor M.E. peer support network is a five-year Action for M.E. project,…
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Share how M.E. has affected your employment

December 14, 2016

“I was very lucky that the occupational health staff in my place of work were very helpful and understanding, as was my line manager. I wasn’t put under any pressure to return to work…
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Fundraiser of the week - Louise Fuller

December 09, 2016

Our fundraiser of the week is Louise Fuller, who is running the London Marathon for us next year because her son has M.E.Talking about his experiences of the illness and her reasons…
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Stop M.E. stealing lives: donate to our Research Appeal

December 05, 2016

It’s shocking that research funding for M.E. is still well below the level we see for other illnesses. It still feels as though some people do not see M.E. as a debilitating, serious…
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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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