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See award-winning M.E. doc Unrest at our events

October 18, 2017

Action for M.E. is thrilled to be partnering with award-winning documentary Unrest to raise awareness and understanding of M.E. and its impact. Working with the team behind the film,…
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Fundraiser of the Week - Amanda Wanless

October 13, 2017

Our fundraiser of the week is Amanda Wanless, who is running the Royal Parks Half Marathon because her sister has M.E.Amanda said: “My sister was the one who talked me into going through…
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Applying for PIP and ESA: share your story

October 13, 2017

Our Head of Communications and Policy will be speaking on BBC Radio 4’s You and Yours programme today about the challenges facing people with M.E. who apply for welfare benefits, specifically…
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Join us for M.E. event at the Royal Free Hospital

October 11, 2017

The impact of M.E., and the challenges faced by children, families and adults living with the condition, will be the focus of an awareness-raising event at London’s Royal Free Hospital…
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Should I get a flu jab if I have M.E.?

October 09, 2017

It’s that time of year where Action for M.E. has started getting numerous queries from people with M.E. about whether or not they should have the flu jab.Last year our volunteer Emily…
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Fundraiser of the week - Adele Currie

October 06, 2017

Our fundraiser of the week is Adele Currie, who took part in a Grand Canyon Trek for us.Joined by her friend Catherine Hunter, Adele trekked her way around the Grand Canyon last month…
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Your chance to take part in PIP and ESA inquiry

October 04, 2017

“During my assessment my M.E. was hardly acknowledged or really talked about. The assessor was a nurse and I felt they had little knowledge of my condition or the difficulties it presents…
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Our 2017 AGM and conference: programme confirmed

October 03, 2017

Action for M.E.'s annual AGM and conference offers a valuable opportunity to share your views and experiences with others affected by M.E., meet Action for M.E. staff, Trustees and…
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Using your experience of M.E. to support others

October 02, 2017

Do you live in Fife, Edinburgh or Lothians? Could you use your experience of M.E. to support someone else living with the condition?We are seeking volunteers to get involved in our Mentor…
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Fundraiser of the week - Sam Wilkins

September 29, 2017

Our fundraiser of the week is Sam Wilkins, who is cycling from Land's End to John O'Groats.Along with their brother Steve, Sam will cycle 969 miles in 9 days to raise awareness of M.E.…
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M.E. costs UK economy over £3 billion

September 28, 2017

M.E. cost the UK economy at least £3.3 billion in 2014/15, according to a research report published today.The figures account for healthcare costs, disability-related welfare payments,…
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Updates on NICE review of CFS/M.E. guidelines

September 27, 2017

The National Institute for Health and Care Excellence (NICE) have announced a full review of the guideline on M.E., Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy):…
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SEN magazine features report into false accusations

September 26, 2017

Action for M.E.’s report into the experiences of families affected by M.E. who’ve faced false accusations of abuse, neglect and fabricated/induced illness has been featured in Special…
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Fundraiser of the week: Matthew Lindley

September 22, 2017

"Shouting about M.E. whilst jumping out of a plane for Action for M.E. because millions of people suffer in silence."That's how this week's brilliant fundraiser of the week, Matthew…
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SMILE Trial results published: Action for M.E. comment

September 20, 2017

Results of a trial published today show that a small cohort of young people with mild or moderate M.E. report improvement in their symptoms after undergoing the Lightning Process in…
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NICE guidelines on CFS/M.E. to be reviewed

September 20, 2017

The National Institute for Health and Care Excellence (NICE) has decided to review its clinical guideline on M.E. following consultation with M.E. charities and other stakeholders,…
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NICE must recognise M.E. is not functional

September 19, 2017

Action for M.E. has responded to a National Institute of Health and Care Excellence (NICE) guideline on Suspected neurological conditions stating that M.E. must not be considered a…
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Fundraiser of the week - Ruth Johns

September 15, 2017

Our fundraiser of the week is Ruth Johns, who has donated the proceeds from her book St Ann’s Nottingham: Inner City Voices, along with Tony Miller, founder of the St Ann’s Well Road…
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Add your voice to those calling for action on PIP

September 14, 2017

“I was too unwell to appeal, knowing that the extra stress would cause further relapse.”That’s the experience of just one person with M.E. who inputted into the Disability Benefits…
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Researchers from the UK, US and beyond at #CMRC2017

September 13, 2017

"Any physician will tell you that you learn a lot more from talking to patients than you do from reading any kind of text book."These are the words of leading US M.E. researcher Dr…
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Senior social workers to learn about impact of M.E.

September 12, 2017

The impact of M.E. will be brought to the attention of senior social workers today when Action for M.E.’s report into families facing false accusations is shared with them at a conference…
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Motion calls for review of the NICE guideline

September 11, 2017

Labour MP for East Ham Stephen Timms has tabled an Early Day Motion (EDM) asking MPs to support a review of the NICE guideline for M.E., after being contacted by constituent and M.E.…
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Fundraiser of the week - Great North Run team

September 08, 2017

Our fundraiser of the week is our Great North Run team!Danny O'Donnell, Sarah Perkin,  Matthew Theobald, Selina Jervis,  Lynne Blakey and Kelly Hooper will be all be taking part in…
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Considering the impact of Brexit on people with M.E.

September 06, 2017

Action for M.E. has helped ensure the needs of people with M.E. are taken into account for a parliamentary meeting about the impact of Brexit on disabled people.We have provided a briefing…
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​Join Action for M.E. for the Great Birmingham Run

September 05, 2017

Join Action for M.E. for the Great Birmingham Run 2017 and help raise funds and awareness for a little understood, life stealing neurological condition affecting thousands of men, women…
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Updated information for teachers and school staff

September 04, 2017

With many schools starting back today, now is the ideal time to educate yourself about how M.E. can affect young people.If you're a teacher or member of staff working in a school setting,…
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Fundraiser of the Week - Siobhan Mays

August 31, 2017

Our fundraiser of the week is Siobhan Mays, who is walking and jogging 50 miles as part of a “run at your pace” event.The distance will be covered between September 1 and September…
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Do you know how to support an employee with M.E.?

August 31, 2017

Many people with M.E. aren’t well enough to stay in employment but for those who are able to manage, it’s vital that their employer understands M.E. and the effect it has on their employee.Our…
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Research conference registration closing soon

August 31, 2017

If you're hoping to attend the 2017 UK CFS/M.E. Research Collaborative (CMRC) conference featuring Prof Jose Montoya on Wednesday 13 and Thursday 14 September, it's worth bearing in…
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​Latest research: hunting for biomarkers

August 25, 2017

Supporting you to stay informed about M.E. research, we publish regular round-ups by Action for M.E. volunteer and pharmacist Emily Beardall, covering a selection of papers published…
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Fundraiser of the week - Wendy Tideswell

August 25, 2017

Our fundraiser of the week is Wendy Tideswell, who is testing her head for heights by taking part in a sponsored wing walk for Action for M.E.Wing walking is exactly what the name suggests…
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All Party Parliamentary Group on M.E. update

August 22, 2017

Following discussion between elected officers, the joint Secretariat, and M.E. charity partners, the All Party Parliamentary Group on M.E. (APPG) will not be re-registered at this time.…
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Guide to severe M.E. now available in our store

August 21, 2017

With the kind permission of Emily Collingridge's family, Action for M.E. has begun selling physical copies of  Severe M.E./CFS - a guide to living through our online store.Severe M.E./CFS…
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Fundraiser of the week - Emma Dixon

August 18, 2017

Our fundraiser of the week is Emma Dixon, who is swimming the length of Coniston Water for Action for M.E.Emma raised a fantastic £1,000 in sponsorship in just 24 hours and has raised…
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M.E. in Northern Ireland: our NVTV interview

August 17, 2017

Less than half of UK NHS boards commission a specialist service for M.E., and Northern Ireland has no provision at all, leaving thousands of desperately ill people unable to access…
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CMRC conference update: filming presentations

August 16, 2017

Experts in neurovirology and orthostatic intolerance take the lead at the fourth annual UK CFS/ME Research Collaborative (CMRC) conference next month, which will be filmed by Action…
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Severe M.E. focus on BBC Radio Suffolk tomorrow

August 14, 2017

M.E. will be the focus of Mark Murphy's programme on BBC Radio Suffolk from 7am tomorrow, with a local mum talking about her family's experience of severe M.E.Action for M.E.’s Head…
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Fundraiser of the week - Tim Reynolds

August 11, 2017

Our fundraiser of the week is Tim Reynolds, who is taking part in the Thames Path Challenge for us.The Thames Path Challenge involves walking, jogging or running 100km from Putney Bridge…
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Action for M.E. calls for improved Scot health service

August 09, 2017

Action for M.E. has called for improvements to Scottish health services in response to an inquiry into the culture of the NHS in Scotland.In our response to the Health and Sport Committee’s…
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Fundraiser of the week - Kelly Hooper

August 04, 2017

Our fundraiser of the week is Kelly Hooper, who is taking part in the Great North Run for us.Talking about her reasons for supporting us, Kelly said: “18 months ago our daughter Fifi…
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Fundraiser of the week - Clive and Gina

July 27, 2017

Our fundraisers of the week are Clive and Gina, who are taking part in the Prudential RideLondon 100 event for us this Sunday.Talking about their reasons for supporting us, Clive said:…
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New report: specialist NHS services for M.E. in the UK

July 25, 2017

A new report by Action for M.E. into specialist services has confirmed that vast numbers of people with M.E. do not have any specialist services in their local area.The report, titled…
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Help shape our work in Scotland: event in August

July 25, 2017

If you have experience of living with M.E. or are a professional with an interest in the illness living in Scotland, we'd like to invite you to attend a meeting to help shape our Scottish…
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NICE guideline on CFS/M.E. must be reviewed

July 24, 2017

Action for M.E. has told the National Institute for Health and Care Excellence (NICE) that the guideline CFS/M.E.: diagnosis and management must be reviewed in full and updated.NICE…
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Fundraiser of the week - Alistair Houghton

July 21, 2017

Our fundraiser of the week is Alistair Houghton, who is taking part in the AJ Bell London Triathlon for us.Taking in several famous London landmarks, the triathlon is considered the…
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​M.E. healthcare in Scotland: share your views

July 21, 2017

What treatment or management approaches for M.E. have you been offered by healthcare professionals? Did they listen to your views and treat you with respect?Action for M.E. is asking…
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Attend both days of CMRC conference: register now

July 18, 2017

Following requests from people with M.E., this year’s CFS/ME Research Collaborative (CMRC) conference is now open to people with M.E., carers and M.E. advocates on both days.Taking…
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Fundraiser of the week - Matthew Driver

July 14, 2017

Our fundraiser of the week is Matthew Driver, who is cycling 100 miles in the Prudential Ride London event for us on July 30 along with his girlfriend Ani.Matthew said: “M.E. is a condition…
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Action for M.E. to NICE: guideline must be reviewed

July 10, 2017

Action for M.E. will respond to a National Institute of Health and Care Excellence (NICE) consultation to say that the clinical guideline for M.E. must be reviewed in full.Having considered…
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Fundraiser of the week - Wendy Fisher

July 07, 2017

Our fundraiser of the week is Wendy Fisher, who is running the Great North Run for us.Wendy said: “I didn't get a place in the ballot, so thought that was it. Then I spotted the charity…
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Holiday advice for parents of people with M.E.

July 06, 2017

If you're the parent of a young person with M.E. (or you have M.E. yourself) and are thinking of going on holiday during half-term, it’s worth knowing that at European airports you…
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Visit Drayton Manor Park and help support our work

July 04, 2017

With the school holidays approaching we have a chance for you to treat the family and raise money for Action for M.E.We’ve partnered with Drayton Manor Park to offer tickets to all…
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Fundraiser of the week - Wil Collins

June 30, 2017

Our fundraiser of the week is Wil Collins, who is combining motorbiking and mountain trekking to raise money for us and awareness of M.E.Explaining the origins of his idea, Wil said:…
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​Research round-up: genetics, comorbidities and more

June 30, 2017

Each month Action for M.E. publishes a round-up of research-related news written by our volunteer Emily Beardall, covering a selection of papers published in peer-reviewed journals.Please…
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Families talk M.E. and child services on BBC Radio

June 29, 2017

More families that have been helped by our Children's Services Team have been speaking out about false accusations that have been made against them despite the threat of continued action…
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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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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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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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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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