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Families affected by M.E. speak out on File on 4

June 28, 2017

The findings of our national survey into the experiences of families affected by M.E. who’ve faced false accusations of abuse, neglect and fabricated/induced illness were revealed last…
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​Action for M.E. to call for review of NICE guidelines

June 27, 2017

Action for M.E. will be calling for a review of the National Institute for Health and Care Excellence (NICE) clinical guideline on M.E.NICE has announced it will be holding a consultation…
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BBC highlights Action for M.E. survey

June 27, 2017

The results of an Action for M.E. survey into the experiences of families affected by M.E. who’ve faced false accusations of abuse, neglect and fabricated/induced illness will be revealed…
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Fundraiser of the week - The BoneShakers

June 23, 2017

Our fundraiser of the week is the BoneShakers group, who have driven from Calais to Monte Carlo in an old donated car.Family members Gill, Matt, Rhiannon and Jane (who is also an Action…
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Action for M.E. comment on GETSET study in Lancet

June 23, 2017

Some people with M.E. report that using a guided self-help version of graded exercise therapy (GET) helps improve symptoms, says a study published yesterday in the Lancet.Two hundred…
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Bristol patients learn about M.E. and welfare benefits

June 22, 2017

Action for M.E.’s Welfare Rights Adviser is hosting a free welfare benefits seminar in Bristol today for patients and their carers who attend the North Bristol NHS Trust CFS/M.E. and…
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Families affected by M.E. coming to BBC’s File on Four

June 21, 2017

The results of an Action for M.E. survey into the experiences of families affected by M.E. who’ve faced false accusations of abuse, neglect and fabricated/induced illness will be revealed…
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Fundraiser of the week - Alice Jones

June 16, 2017

Our fundraiser of the week is Alice Jones, who ran the Sydney Half Marathon for us in two hours and 22 minutes!Alice decided to raise money for us in aid of her little sister El, who…
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Action for M.E. closed Thursday for staff training

June 14, 2017

The Action for M.E. office will be closed tomorrow (Thursday) for staff training.That means our Information and Support line, Welfare Advice and Support Service, and other services…
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New scheme to help you get a seat on London transport

June 14, 2017

If you have M.E., live in London and find yourself having to stand when using public transport, you may benefit from the Please Offer Me a Seat campaign.The scheme by Transport for…
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Support available for carers of people with M.E.

June 13, 2017

Do you help look after someone with M.E.? Do you give support and assistance to a partner, family member or friend who's living with the condition? If so, that makes you a carer.Action…
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Fundraisers of the week – Elizabeth and Sally Keyworth

June 09, 2017

Our fundraisers of the week are mother and daughter team, Elizabeth and Sally Keyworth, who are helping us celebrate 30 years of Action for M.E. with some simple, fun challenges you…
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Next government must do more to help people with M.E.

June 09, 2017

In the lead up to the general election, Action for M.E. ran a pledge campaign asking you to contact your parliamentary candidates, and joined 80 other charities in calling for an end…
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GPs report greater understanding of M.E. after webinar

June 08, 2017

Increased awareness of M.E. symptoms, a greater understanding of the impact the illness has on patients’ lives and the importance of listening to patients are among the things GPs say…
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M.E. pharmacy guide sent to over 10,000 professionals

June 06, 2017

Our new guide for pharmacists on how best to help people with M.E. has been included in the monthly email alert from the Pharmaceutical Services Negotiating Committee (PSNC), which…
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General Election 2017: how will you be affected?

June 05, 2017

All of the main parties have now released their manifestos for the upcoming General Election on Thursday. We’ve summarised how some of the key policies outlined in the manifestos are…
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Fundraiser of the week - Rachel Ephgrave

June 02, 2017

Our fundraiser of the week is Rachel Ephgrave, who is organising a series of events and activities for Action for M.E. Rachel’s first challenge involved giving up a treat for a week…
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PIP change could help people with M.E.

June 02, 2017

A new change to the way Personal Independence Payment (PIP) applications are processed could be helpful to people with M.E.In a recent PIP decision, the tribunal decided that when considering…
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Reablement not appropriate for people with M.E.

June 01, 2017

Action for M.E. has responded to a National Institute for Health and Care Excellence (NICE) consultation on Intermediate care including reablement stating that reablement is inappropriate…
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M.E. Awareness Month 2017 - the difference you made

May 31, 2017

As M.E. Awareness Month 2017 draws to a close, we’d like to thank everyone who helped us raise awareness and share some information on the difference you helped us make.Some of you…
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Action for M.E. launches pharmacy resource

May 26, 2017

Action for M.E. has launched an M.E. information resource for community pharmacy teams across the UK, M.E./CFS: a guide for pharmacy teams. In response to the growing need for community…
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Our London Marathon runners raise over £22,000

May 24, 2017

The totals are now in and we can confirm that our amazing London Marathon runners have raised an incredible £22,016 for us this year!We’d like to say a massive thank you to Michael…
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Action for M.E. raising awareness on BBC Radio today

May 24, 2017

Action for M.E. will be raising awareness of M.E. on BBC Radio Shropshire today from around 10.30am today.Our CEO Sonya Chowdhury will be joining a woman who has had M.E. for nine years…
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Our CEO talks about being parent to a child with M.E.

May 23, 2017

"I am so fed up of having to explain to people that Danny is not just tired; if only that were the case. We have lost friends, good friends, when we ran out of patience with explaining…
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Fundraiser of the week - Newby family

May 19, 2017

Our fundraiser of the week is the Newby family - Joanne, Lydia and Marcus and Max, who held a bingo and raffle fundraising event at Howard Park Community School.Colleagues and local…
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​Research round-up: faulty pain receptors and more

May 18, 2017

Each month, Action for M.E. volunteer and 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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Paediatric conference today: sharing our concerns

May 18, 2017

A paediatrics conference hosted today by Royal Devon and Exeter NHS Foundation Trust's South West Paediatric Club has been given the title A Day with the MUPP(ET)S – Medically Unexplained…
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​Our Board of Trustees on CBT, GET and PACE

May 16, 2017

In April, our Board of Trustees met to discuss Action for M.E.’s position on a range of key issues relating to our work.This includes a number of serious concerns raised by our supporters…
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Holly walks 13.6 miles to school for M.E. awareness

May 15, 2017

M.E. Awareness Week may be over but that hasn’t stopped people like Holly from helping us raise awareness for M.E. Awareness Month!Holly has just finished an impressive 13.6 mile walk…
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Opposing cuts to disability benefits

May 15, 2017

Action for M.E. is urging the next Government to make no more cuts to disability benefits and have partnered with other charities in the Disability Benefits Consortium (DBC) to make…
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Fundraiser of the week - Yasmin

May 12, 2017

Our very special fundraiser of the week for M.E. Awareness Week is eight-year-old Yasmin, who is the youngest team leader to have taken part in Walk with M.E.Natalie Heron, one of the…
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Raising awareness for M.E. Awareness Day

May 12, 2017

The Department of Work and Pensions is encouraging its staff to read our toolkit for professionals for M.E. Awareness Day today, which tells employers how best to support people with…
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New M.E. resource for pharmacists coming this month

May 10, 2017

Action for M.E. will continue to educate healthcare professionals by launching a new resource for pharmacy professionals by the end of M.E. Awareness Month.“I spotted a gap in learning…
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Action for M.E. informs Scot parliament debate on M.E.

May 09, 2017

Action for M.E. has provided briefings for parliamentarians taking part in a debate in the Scottish parliament this week, following a motion from Gail Ross MSP for the Parliament to…
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New project to lead change launched in Scotland

May 09, 2017

Action for M.E. has launched a new 12-month, Scottish Government-funded project as part of M.E. Awareness Month that will allow us to lead change in Scotland by reaching out to health…
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​Will you pledge to show the world that #MEmatters?

May 08, 2017

People with M.E. often tell us that the lack of understanding and empathy they receive from the professionals that can make a difference to their lives and members of the public is…
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Fundraiser of the week - Pippa Stacey

May 05, 2017

Our fundraiser of the week is Pippa Stacey, who has been selling a special edition Spoonie Survival Kit for M.E Awareness Month 2017.These kits include items specially designed for…
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New forums for children and parents affected by M.E.

May 04, 2017

Action for M.E. is pleased to announce the launch of two new forums, offering peer-support to families with M.E.Our young member’s forum is open to Action for M.E. members aged under…
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​One million steps in 100 days for people with M.E.

May 04, 2017

For the past three months, staff here in the Action for M.E. office have got used to having meetings on the hoof – quite literally – as two team members walk one million steps in 100…
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PLOS ONE issues Expression of Concern on PACE

May 03, 2017

The journal PLOS ONE has issued an Expression of Concern about the PACE trial paper it published in 2012.“Several readers have raised concerns about some of the analyses reported in…
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May is M.E. Awareness Month: get involved

May 02, 2017

We know that people with M.E. score lower on health-related quality of life tests than most other chronic conditions. One in four is house or bedbound, unable to care for themselves…
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Fundraiser of the week - Phil Guy

April 28, 2017

Our fundraiser of the week is Phil Guy, who organised a concert as a way to support his younger sister Jasmine, who has been living with M.E. for over three years.Talking about his…
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New forums to launch next week

April 28, 2017

Action for M.E. hopes to launch our new closed, private forums early next week.The forums – one for under 18s, and one for parents of children with M.E. – will be accessed through our…
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Action for M.E. submits evidence to PIP inquiry

April 27, 2017

Action for M.E. has submitted evidence to the Work and Pensions Committee inquiry into Personal Independence Payment (PIP).Frank Field MP, Chair of the Committee, wrote to Action for…
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CMRC conference comes to Bristol - tickets available

April 25, 2017

Experts in neurovirology, imaging and orthostatic intolerance will take the lead for the fourth annual UK CFS/M.E. Research Collaborative (CMRC) conference, which will this year be…
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M.E. must continue to be classified as neurological

April 24, 2017

Action for M.E. has collaborated with other Forward M.E. charities to strongly support the call for M.E. to continue being classified as a neurological condition by the World Health…
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Fundraiser of the week London Marathon runners

April 21, 2017

This Sunday will see thousands of runners taking to the streets for the Virgin Money London Marathon and we'd like to give a massive thank you to our London Marathon runners.Amelia…
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Your guide to Employment and Support Allowance changes

April 19, 2017

Our Welfare Rights Adviser Anna Nash explains the recent changes to Employment and Support Allowance.From April 2017, the Government has introduced changes to Employment and Support…
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Fundraiser of the week - Claire Spake

April 13, 2017

Our fundraiser of the week Claire Spake had an interesting idea of how to raise money for us - painting 100 things from the 90s in 100 days!For 100 days from April 10, Claire will be…
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Launch of new private forums delayed

April 12, 2017

Work is progressing well on the planned launch of two new Action for M.E. forums, but technical issues mean that we aren’t able to launch them today as planned.The closed, private forums…
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Research round-up: potential biomarker for M.E.

April 11, 2017

A potential biomarker, and the effect of exercise on the brains and bodies of people with M.E., are the highlights of our monthly research round-up for April. Researched and written…
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Beth French to host Gala dinner for Action for M.E.

April 10, 2017

Record breaking open water swimmer Beth French is to host a gala dinner in Somerset to raise awareness and vital funds for Action for M.E.Beth aims to become the first person to complete…
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Fundraiser of the week - Amanda Wanless

April 06, 2017

Our fundraiser of the week is Amanda Wanless, who is raising money for us because her sister has M.E."After taking part in the 10k Winter run I managed to get talked into entering the…
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Could you be our new Senior Fundraiser?

April 06, 2017

Action for M.E. is looking to recruit a new Senior Fundraiser to work full-time (35 hours per week) in our Keynsham office.You will lead our income generation work alongside colleagues…
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Action for M.E. submits evidence to PIP review

April 05, 2017

The Second Independent Review of the Personal Independence Payment (PIP) Assessment was published last week after Action for M.E. submitted evidence to the review, based on survey responses…
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Would you send an email to help educate GPs about M.E.?

April 04, 2017

Would you be willing to send an email to help educate GPs about M.E.?Our Medical Advisor, Prof Julia Newton, will host an Action for M.E. educational webinar for GPs and healthcare…
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Action for M.E. launches Children's Services Team today

April 03, 2017

Today marks the launch of our Children’s Services Team, a dedicated team for children, young people, parents/family and carers affected by M.E.We’ve set up a dedicated Children and…
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Fundraiser of the week - Salli Murray

March 31, 2017

Our fundraiser of the week is Salli Murray, who came up with the idea of Walk with M.E. along with Natalie Heron.Talking about her reasons for supporting us, Salli said: "When I was…
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Do you want your GP to learn more about M.E.?

March 30, 2017

If you’d like your GP to learn more about M.E. then please consider sending them a copy of our template letter inviting them to our educational webinar on May 4.A third of people with…
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Severely affected in MEGA are "absolutely essential"

March 30, 2017

The Scientific Team and the Patient Advisory Group for MEGA have confirmed that data will be collected from those most severely affected by M.E., preferably through home visits.The…
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Forums for carers, parents and young adults launched

March 29, 2017

Action for M.E. has today set up two new message boards within our M.E. Friends Online forum – one for carers and parents, and another for young adults aged 18-26, both of which can…
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​Information and support: how to contact us

March 28, 2017

Following our announcement about of the launch of our Children's Services Team, we want to make sure that everyone affected by M.E. knows who to contact.As of next week, children, young…
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Fundraiser of the week - Amelia Crawford

March 24, 2017

Our fundraiser of the week is Amelia Crawford, who is running the 2017 London Marathon and has already raised over £2,300 for us!Her inspiration for taking on the 26-mile challenge…
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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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