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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
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 launched
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

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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