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Considering the impact of Brexit on people with M.E.
Fundraiser of the week: Franco de la Croix-Vaubois
Sharing research data: Board states our position
Our letter in support of PACE trial data release
Alliance funds our new five-year project
M.E. in the media: M.E. Awareness Month so far
APPG on M.E. invites MPs to learn more about M.E.
M.E. and social care: new film for professionals
UK M.E./CFS Biobank launches today, M.E. Awareness Day
Watch our new awareness raising film 'What is M.E.?'
Presenting evidence to Isle of Man government committee
Latest research projects announced, plus new funding available
Fundraiser of the week - Princess Leia
M.E. in the media: raising awareness, reducing isolation
MEGA M.E. research project: first of its kind in UK
London Marathon - over £26,600 raised
Fundraiser of the week - Mia and Becky
Highlighting M.E. on the global health agenda
M.E. highlighted at new Phenome Centre launch event
Tell us about the impact of the 20m PIP rule
Wellbeing, choice and control: what's your social care experience?
Big data and biomarkers at the CMRC 2016 conference
Fundraiser of the Week: ultra marathon runner Darren Philips
New self-advocacy guide for people with M.E. in Scotland
Brain changes and killer cells: research round-up
M.E. in the media: the double whammy of isolation
Fundraiser of the week - Alan and Malcolm
Taking care of carers: Carers Week 2016
Prof Ron Davis' severe M.E. study: initial findings presented
Fundraiser of the week - Lucy and Phil
Government questioned by UN over austerity measures
Ministers answer parliamentary questions on M.E.
Fundraiser of the week - Michelle Conner
Greater Manchester Neurological Alliance launches
Taking action to raise awareness of M.E. in Wales
Fundraiser of the week - Trevor Kay
Your chance to help shape the new Independent Living Fund for Scotland
June Research Round-up
Speaker's House event to thank and influence tonight
New five year strategy announced at speaker's house event
Neurological Alliance seeking views of people with M.E.
Fundraiser of the week - Dana Boundy
Mass participation event for disabled people launched in London
Minister Alistair Burt responds to question on M.E. and social care
M.E. in the media roundup
Fundraiser of the week - Beth French
Our funded research: latest muscle dysfunction and immune findings
Highlighting lack of support for people with M.E. in Wales
Fundraiser of the week - Siobhan Duff
Has your social care assessment been delayed?
Government encourages more high-quality M.E. research proposals
How can the Government improve support for carers?
Fundraiser of the week - Mark Cockburn
Action for M.E. informs report on welfare benefit entitlement
London Marathon 2017 - your chance to support our work
Bringing M.E.-friendly theatre to your sofa
Fundraiser of the week - Julian Head
PIP change could make claiming easier for people with M.E.
Action for M.E. needs budding designers
New theory on neuro: our latest research round-up
Do you claim PIP? Share your experience
Fundraiser of the week - Jude Adams
Help us raise awareness for Severe M.E. Day today
Welfare support line open again from next week
Fundraiser of the week - Rachel Gill
Neurological Alliance publishes report on primary care
Tribunal rules in favour of releasing PACE trial data
Fundraiser of the week - Oli Jones
Fundraiser of the week - Myck Beddall
Professional versus peer support: August research round-up
Will your MP be at next week's APPG on M.E. meeting?
Highlighting M.E. at the Beauty Unseen event
New research: distinct biological differences in M.E.
Epic swim challenge for supporter Beth French
Fundraiser of the week – Joan White
Collaborating for change: conference booking now open
Millions missing: add your voice to the campaign
New peer-mentoring support network seeks volunteers
Control of welfare benefits in Scotland: have your say
Lloyds Bank staff learn about M.E.
Fundraiser of the week: Rob Norris
PACE data released to M.E. patient via FOI request
Fundraising campaign asks: what's your M.E. marathon?
InterAction 93 is now out: got your copy?
Action for M.E. responds to independent PIP review
Fundraiser of the week – Neil Robinson
M.E. in the media: new challenges for Jude and Beth
Latest ESA statistics show 56% success rate on appeal
Preliminary analysis of newly released PACE data
Winter is coming: the flu vaccine and M.E.
Third CMRC conference starts tomorrow
Action for M.E. attends Millions Missing event in Bristol
MEGA research for M.E./CFS: pledge your support
Clear need for M.E. research investment, says report
Fundraiser of the week - Vikki Howell
New employment resources for people with M.E.
M.E. in the limelight at Beauty Unseen
Fundraiser of the week - Margaret Nightingale
Sonya Chowdhury responds to ‘psychosomatic’ comment
Action for M.E. attends Disability Fight Back Seminar
Calling all artists - InterAction needs you
Registration open for our 2016 annual conference and AGM
Fundraiser of the week - John and Sonia
Post-exertional malaise: our latest research round-up
Fundraiser of the week - Dan Henning
New M.E. technologies: our AGM and conference
Action for M.E. CEO attends IACFS conference
Fundraiser of the week - Northumberland Ghostbusters
Got experience of M.E.? Take part in our new project
Social world podcast: the reality of M.E.
MEGA update: blogs by Profs Perry and Ponting
Action for M.E. respond to Scottish Government consultation
New FITNET trial announced for young people with M.E.
UK Government publishes Work, Health and Disability Green Paper
New MEGA website to feature improved accessibility and engagement
Fundraiser of the week - Matt Robinson
Celebrating SEE M.E. project success today in Bristol
Christmas Angels wanted: get in touch today
ME/CFS International Alliance protests Shorter lecture
2016 conference and AGM registration closes Friday
Employment project nominated for second national award
Fundraiser of the week - Jane Marlene Lowe
Watch our conference from home: just four days to go
National Institutes of Health responds on M.E. lecture
Improve, inspire and invest: our strategy for change
Action for M.E. signs letter against £30 ESA cut
Have your say on benefit sanctions today
Why we are supporting the MEGA research project
PhDs and postdoc M.E. research funding: apply now
New Chair and Trustees welcomed to our Board
Fundraiser of the Week - Danny O'Donnell
New MEGA research website now live
Bath Half Marathon - help us support people with M.E.
Raising awareness with the Department of Work and Pensions
Chance for people with M.E. to shape Scottish benefits
Stop M.E. stealing lives: donate to our Research Appeal
Fundraiser of the week - Jade Turner
Fundraiser of the week - Louise Fuller
Share how M.E. has affected your employment
Mentor M.E. peer support project needs volunteers
Using your experience of M.E. to support others
Christmas 2016 InterAction out now
M.E. and social care inquiry: can your MP attend?
Fundraiser of the week - Linda Hammick
December research news: biobank, CMRC report and more
Fundraisers of the Week: too many to name!
We could not achieve what we do without you: thank you
Bath Half Marathon - help us support people who have M.E.
Fundraiser of the week - Simon Dooley
Help shape DWP policy at London disability event
Fundraiser of the week - Lynsey Gow
Fundraiser of the week - Caroline Skinner
Work, health and disability survey: thank you!
Fundraiser of the week - Natalie Heron
Could you benefit from peer mentor support?
Raising awareness of M.E. at Naidex care and disability event
Evidence for benefit cuts is "ambiguous at best"
Fundraiser of the week - Georgia Pearce
Take part in the Big Benefits Survey
Fundraiser of the week - Susan and Brian
Highlighting the need for greater understanding of M.E.
Fundraiser of the week - Karen Risidore
Research finds link to dysfunctional immune system
Help us raise another record-breaking total in the Ride London 100
Educating GPs about M.E. at top neurology conference
Fundraiser of the week - Class 9ML
Information and support line - new opening hours
Survey into false accusations against families of young people with M.E/CFS launched
Working with Naidex to raise awareness of M.E.
Fundraiser of the week - Peter Vaiders
Ask your MP to oppose PIP changes and ESA cuts
Free prescriptions campaign for long-term conditions launched
Action for M.E. responds to 2017 budget
Impact of M.E. highlighted in Welsh Assembly
Fundraiser of the week - Tania Parfitt
Action for M.E. launches new Children’s Services Team
Letter to Psychological Medicine re the PACE trial
Survey highlights need for greater understanding of M.E. among GPs
Fundraiser of the week - Bill Haywood Smith
GPs enthusiastic to learn more about M.E.
Experiences of PIP claimants needed for new inquiry
Fundraiser of the week - Salli Murray
Children’s Services Team to pick up AYME survey data
Action for M.E. launches Children's Services Team today
New project to improve health and social care in Scotland
Would you send an email to help educate GPs about M.E.?
Action for M.E. submits evidence to PIP review
Fundraiser of the week - Amelia Crawford
Information and support: how to contact us
Could you be our new Senior Fundraiser?
Fundraiser of the week - Amanda Wanless
Forums for carers, parents and young adults launched
Severely affected in MEGA are "absolutely essential"
Beth French to host Gala dinner for Action for M.E.
Do you want your GP to learn more about M.E.?
Research round-up: potential biomarker for M.E.
Launch of new private forums delayed
Fundraiser of the week - Claire Spake
Your guide to Employment and Support Allowance changes
Fundraiser of the week London Marathon runners
M.E. must continue to be classified as neurological
CMRC conference comes to Bristol - tickets available
Action for M.E. submits evidence to PIP inquiry
New forums to launch next week
Fundraiser of the week - Phil Guy
May is M.E. Awareness Month: get involved
PLOS ONE issues Expression of Concern on PACE
One million steps in 100 days for people with M.E.
New forums for children and parents affected by M.E.
Fundraiser of the week - Pippa Stacey
Will you pledge to show the world that #MEmatters?
New project to lead change launched in Scotland
Action for M.E. informs Scot parliament debate on M.E.
New M.E. resource for pharmacists coming this month
Raising awareness for M.E. Awareness Day
Fundraiser of the week - Yasmin
Opposing cuts to disability benefits
Holly walks 13.6 miles to school for M.E. awareness
Our Board of Trustees on CBT, GET and PACE
Paediatric conference today: sharing our concerns
Research round-up: faulty pain receptors and more
Fundraiser of the week - Newby family
Our CEO talks about being parent to a child with M.E.
Action for M.E. raising awareness on BBC Radio today
Our London Marathon runners raise over £22,000
Action for M.E. launches pharmacy resource
M.E. Awareness Month 2017 - the difference you made
Reablement not appropriate for people with M.E.
PIP change could help people with M.E.
Fundraiser of the week - Rachel Ephgrave
General Election 2017: how will you be affected?
M.E. pharmacy guide sent to over 10,000 professionals
GPs report greater understanding of M.E. after webinar
Next government must do more to help people with M.E.
Fundraisers of the week – Elizabeth and Sally Keyworth
Support available for carers of people with M.E.
New scheme to help you get a seat on London transport
Action for M.E. closed Thursday for staff training
Fundraiser of the week - Alice Jones
Families affected by M.E. coming to BBC’s File on Four
Bristol patients learn about M.E. and welfare benefits
Action for M.E. comment on GETSET study in Lancet
Fundraiser of the week - The BoneShakers
BBC highlights Action for M.E. survey
Action for M.E. to call for review of NICE guidelines
Families affected by M.E. speak out on File on 4
Families talk M.E. and child services on BBC Radio
Research round-up: genetics, comorbidities and more
Fundraiser of the week - Wil Collins
Visit Drayton Manor Park and help support our work
Holiday advice for parents of people with M.E.
Fundraiser of the week - Wendy Fisher
Action for M.E. to NICE: guideline must be reviewed
Fundraiser of the week - Matthew Driver
Attend both days of CMRC conference: register now
Fundraiser of the week - Alistair Houghton
Tell NHS Wales about your access to health services
M.E. healthcare in Scotland: share your views
NICE guideline on CFS/M.E. must be reviewed
New report: specialist NHS services for M.E. in the UK
Help shape our work in Scotland: event in August
Fundraiser of the week - Clive and Gina
Blood biomarkers may help diagnose CFS
Fundraiser of the week - Kelly Hooper
Research symposium to stream live this Saturday
Action for M.E. calls for improved Scot health service
Fundraiser of the week - Tim Reynolds
Severe M.E. focus on BBC Radio Suffolk tomorrow
CMRC conference update: filming presentations
M.E. in Northern Ireland: our NVTV interview
#CMRC2017 update: Prof Jose Montoya confirmed
Fundraiser of the week - Emma Dixon
Guide to severe M.E. now available in our store
All Party Parliamentary Group on M.E. update
Fundraiser of the week - Wendy Tideswell
Latest research: hunting for biomarkers
Research conference registration closing soon
Do you know how to support an employee with M.E.?
Fundraiser of the Week - Siobhan Mays
Updated information for teachers and school staff
Join Action for M.E. for the Great Birmingham Run
Our 2017 AGM and conference: programme confirmed
Fundraiser of the week - Great North Run team
Motion calls for review of the NICE guideline
Add your voice to those calling for action on PIP
Senior social workers to learn about impact of M.E.
Researchers from the UK, US and beyond at #CMRC2017
Fundraiser of the week - Ruth Johns
NICE must recognise M.E. is not functional
NICE guidelines on CFS/M.E. to be reviewed
SMILE Trial results published: Action for M.E. comment
Fundraiser of the week: Matthew Lindley
Julia Newton to hold Q&A on M.E.
SEN magazine features report into false accusations
Updates on NICE review of CFS/M.E. guidelines
M.E. costs UK economy over £3 billion
Fundraiser of the week - Sam Wilkins
Your chance to take part in PIP and ESA inquiry
Fundraiser of the week - Adele Currie
Should I get a flu jab if I have M.E.?
Call for biomedical PhD research proposals now open
Join us for M.E. event at the Royal Free Hospital
Applying for PIP and ESA: share your story
Fundraiser of the Week - Amanda Wanless
Exclusion from re-assessment: ESA criteria released
CMRC Board meeting: conference and next steps
See award-winning M.E. doc Unrest at our events
How can we best support children with M.E.?
Fundraiser of the Week: Jon Winter
Campaigning for M.E. at Safe in School lobby day
Research round-up: defining M.E., recovery and more
Your chance to help shape our children's services
Teachers, your opinions are needed
Fundraiser of the Week - Ben Brockway
One week left to share your experience of PIP or ESA
Could you be a Christmas Angel for someone with M.E.?
Double your donation: the Big Give Christmas Challenge
Unrest screening plus Q&A in Bath on 14 November
Fundraiser of the week: Matthew Inge
Latest research: M.E. cellular bioenergetics impaired
PIP changes could benefit people with M.E./CFS
Action for M.E. attending launch of Oceans 7
New webinar for healthcare professionals coming soon
Fundraiser of the week - Chelsea Higgott
Join Team Action for M.E. for the Bath Half
Raising concerns about M.E. in Scottish Parliament
Watch our AGM live tomorrow morning from 10.25
Finance, children's services and Unrest film at AGM
Fundraiser of the Week - David Fisher
Webinar for healthcare professionals next Thursday
Autumn Budget 2017: what to expect
Fundraiser of the week - Meike Scheller
Your donations doubled for Big Give next week
#GiveBig for M.E. and see your donation doubled
"Action for M.E. has helped me massively"
"It's hard seeing all your friends living their lives"
Big Give donations top £100,000
"I have lost all friends now"
Fundraiser of the week - Sean Weller
"I feel like I walk a tightrope with my energy levels"
Big Give Christmas Challenge raises over £121,000
Updating the NICE guideline: next steps
Christmas card competition: send your festive photos
Fundraiser of the week: Manus Noble
Webinar recording now online
Government sets out disability employment strategy
InterAction 97 is now out: got your copy?
Families affected by M.E. attend Downing Street
Fundraiser of the Week - Lauren Kendrick
DWP drops target for upholding benefit decisions
Unrest now available to buy on DVD
Fundraiser of the Week: James Reay and Simon Dooley
New webinar for health professionals coming this month
Fundraiser of the week: Hayley Bosley
#CMRC2017 conference report now online
Join us for Walk with M.E. 2018
InterAction needs you: share your ideas and tips
Paediatric M.E. research study: alternative funding
Fundraiser of the week - Bethany and team
International M.E. advocacy: our latest project
NICE guideline: Action for M.E. at scoping meeting
Walk with M.E. - Natalie's story
Unrest to be screened at Scottish Parliament
Fundraiser of the week - Liese
Welfare line gets new opening hours 29 January
Office closed for staff training Tuesday and Wednesday
Latest research: criteria, course of illness and more
Fundraiser of the week - Gill
Share your experience of chronic pain
Bethany’s Walk with M.E. challenge
Welfare line closed today
Fundraiser of the week - Libby
Views on PIP needed in Northern Ireland
PACE trial to be debated at Westminster
Fundraiser of the Week - Rotary Club of Baldock
PIP and ESA report: "Process needs urgent change"
Fundraiser of the week - Nick Biddle
NICE announces next steps in guideline update
PACE trial Westminster debate - our summary
New PhD funding for biomedical M.E. research
Better support needed for M.E. in schools
Discussing M.E. on BBC Five Live today
Keeping in touch with Action for M.E.
CMRC update: new purpose, objectives and values
Scotland survey needs your input
The Big Give keeps on giving: thank you!
Fundraiser of the week - Jemma Storey
Our CEO named in Top 100 West Women of the Year 2018
Action for M.E. on BBC Radio Bristol today
Fundraiser of the week - Chloe Salanson
Raising awareness of M.E. at JobCentre Plus
What impact has claiming benefits had on your life?
PACE update: latest analysis and comment
Dangers of GET highlighted in letter to The Times
Fundraiser of the Week - Ella Walters
Our latest Cheers update, by and for Young Members
Your experience of health and social care for M.E.
Research round-up: autoimmune disease and M.E./CFS
Call for Science Media Centre to retract factsheet
Fundraiser of the Week - Katie Howell
Welfare line temporarily closed
Millions Missing Protest coming to Geneva
Fundraiser of the week - Myurah Nathan
"I was desperate to talk to someone who understood"
Info and Support Line update: revised hours
Fundraisers of the week: our London Marathon team
What was the impact of your benefit sanction?
Invite your MSP to Scottish Parliament event
International advocacy work "very encouraging"
Fundraiser of the week - Julia Ferguson
Helping you explain your health care needs
Action for M.E. meeting with Minister for Children
Registration now open for 2018 CMRC conference
Fundraiser of the week - Sophie Funnell
Your chance to show the world that #ThisisME
National Mass Observation Day needs your diaries
Patients and professionals show MSPs: This is M.E.
Ask your MP to show support for M.E. Awareness Week
Fundraiser of the week - Walk with M.E.
IAME's letter to the WHO for M.E. Awareness Day
Walk with M.E. raises over £3,300
Fundraiser of the week - Leanne Toward
Have you received SEND support in school?
M.E. highlighted at the 71st World Health Assembly
New biomedical research PhD launched in Scotland
Taking action on Personal Independence Payment
Action for M.E. attending NICE guideline meeting
Fundraiser of the Week - Lucy Goodwill
People with M.E. must be heard, says NICE committee
Welfare line to re-open soon
Fundraiser of the week - Claire Green
Our latest funded PhD: brain function in M.E.
Scottish Parliament event recording now online
Westminster treatment and research debate confirmed
Latest research roundup: Rituximab effects and more
Fundraiser of the week - Leanne Towart
InterAction now available in audio format
Experiences of M.E. featured in Dear Chronic Illness
Fundraiser of the week - Rob Bold
Financial help for students to attend CMRC 2018
Action for M.E. to sign open letter to Lancet
Parliamentary debate on M.E. - our summary
NICE ask for input on guideline on M.E./CFS
Fundraiser of the week - Adam Chivers
Correcting some inaccuracies about us and our work
NICE consultation feedback now open to carers
2018 research conference programme announced
Fundraiser of the week - Haywoods Group
First episode of M.E., myself and I out now
Raising awareness with Work and Pensions Committee
Fundraiser of the week - Katie Collins
Support available for students with M.E.
New study brings M.E. test closer
Action for M.E. launches advocacy service
Fundraiser of the week - Peter Wharton
Fundraiser of the Week - Devonshire House
Notts County FC to help raise awareness of M.E.
Action for M.E. responds to NICE consultation
GP system updated to reflect M.E. as neurological
Fundraisers of the week - National Citizens Service
Today is Severe M.E. Day
Meet others with M.E. in Glasgow at our taster session
Fundraiser of the week - supporting severely affected
Tributes paid to Professor Norman E. Booth
Fundraiser of the week - Elizabeth Carswell
Book now: UK CMRC conference 2018
Raising awareness of M.E. in a school near you
M.E. on BBC Radio London Drivetime show today
Our promises to children and young people with M.E.
Fundraiser of the week: Renée de Nève
The PACE trial and behavioural treatments for M.E.
Closure of phone lines - Friday 31 August
Fundraiser of the week: David Furness
Come on, you Pies! Action for M.E. and Notts County FC
Join us at Notts County FC this month
InterAction 99 has been released
Fundraiser of the week: Rob Findlow
Scottish Liberal Democrats adopt new policy on M.E.
Action for M.E.'s 2018 AGM and Conference
Fundraiser of the week: Notts County FC
Saying thank you to the Notts County FC community
Managing type 2 diabetes alongside M.E.
The 2018 CMRC conference is underway
Fundraiser of the Week: Robert Godsell
Action for M.E. and Forward M.E. at GP conference
British 10k total
Out and about with M.E.
Fundraiser of the Week: Scarlett Tomes
Action for M.E. and Notts County FC: the last match
Highlighting M.E. at RCGP conference today and Friday
Didn't get a London Marathon ballot place? Run for us!
CMRC2018 conference: first films now available
Fundraiser of the week - Francis and Liza
InterAction 99 available now on Soundcloud
Applications invited for CMRC Patient Advisory Group
Welfare line update: temporary two-week closure
Fundraiser of the week: Grant Watling
Welfare debate: Let us contact your MP
NICE publishes final scope for M.E./CFS guideline
Fundraiser of the week- Lizzie Carswell
Celebrating ten years of Forward M.E.
NICE guideline scope and committee: update & comment
Fundraiser of the week- Leigh Walker
Regional Advocacy Service
Be an angel this Christmas: Join now
Action for M.E. annual AGM conference: Get involved
Welfare Advice and Support Service update
Mentor M.E. confirmed funding from ALLIANCE
Great North Run 2019 (Charity fundraising places)
Fundraiser of the week- Clare Wills
Have your say: new Standards for Neurological Care
Latest Research: post-exertional malaise & more
Thank you to everyone who participated in RideLondon
Welfare Advice and Support Service now open
NICE guideline development committee update
Can you help? Run a stall this Christmas
Fundraisers of the week: Bowls Cornwall club

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 survey.

The Alliance, of which Action for M.E. is a member, hopes to collect vital information about the experiences of care received by people affected by neurological conditions to help them understand how much progress has been made in improving neurological services.

The survey is open until September 30 and the Alliance welcomes responses from anyone with a neurological condition living in England.

They will be using the survey findings to feed into a report early next year. The report will set out a comprehensive picture of what is happening in relation to neurological services and make recommendations about how care can be improved.

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Neurological Alliance seeking views of people with M.E.

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