Welcome to the 25% ME Group Awareness web page. Below are Quick Links for this Page.
Understanding and Remembrance for Severe ME Day
Letter to QUML
ME AWARENESS INFORMATION MATERIAL
LINK to Care Information documents that members can use
QUESTIONNAIRE: claiming Personal Independence Payment (PIP)
MP LETTER - No Testing: No Results - No Care?
Home Care Worker Key Messages (April 2016)
MP Form letter
MP Information Sheet
Press Release celebrating 20 yrs of charity
Healthwatch Feedback Initiative - information sheet
- In our ‘Miniquart’ newspage for ME Awareness 2015 we highlighted an initiative by the new Health and Social Care watchdog - ‘Heathwatch’ to gather feedback from people with M.E. about their experiences of health and social care. This information sheet provides further details and explains how you can participate
Healthwatch - The Bigger Picture (new rights and duties in the NHS)
- This says more about the origins of Healthwatch. There is info re new rights and duties brought in response to the Francis Report on the Mid Staffordshire Hospital scandal, notably legally enforcable Fundamental Standards as set out in Care Quality Commission regulations, including a new Duty of Candour. The Healthwatch initiative is also in keeping with Rights and Pledges set out in the NHS Constitution - further info here on this also
Bodily Distress Syndrome : a biased, dangerous supposition
ME AWARENESS INFORMATION
MINI QUART sheet
Westminster MP letter
Scottish MSP letter
Wales Assembly letter
Northern Ireland Assmbly letter
Ensuring M.E. Patient Safety - backup information sheet
Appeal for Appropriate Care Kay G
ESA Questionnaire 2014
ME AWARENESS WEEK 12TH - 18TH MAY
MP/MSP Letter, which includes: The 'Work Capability Assessment' - Fit for Purpose?
ESA Feedback Questionaire
Sponser Form - The Big Shave
Big Shave Press Release
ME AWARENESS WEEK 2012 - 6TH - 13TH MAY
ESA Feedback Questionnaire
MP Letter draft Tues 27th March
Quality of Life and Prognosis research
Tom Kindlon's_paper summary for website
AWARENESS WEEK 8th-14th May
MP/MSP Form Letter
MP/MSP Briefing Paper and a longer web version
25% Group Press Release concerning PACE
Information Sheet concerning PACE and FINE Trials - For Doctors and other Medical Professionals
Biomedical Information Sheet - For Doctors and other Medical Professionals
News - Information - Advice Sheet
Kay Gilderdale's Book about Lynn's Life
THE WORK CAPABILITY ASSESSMENT – A CALL FOR EVIDENCE
This is the submission from the 25% M.E. Group to the Independent Review of the Work Capability Assessment
25% ME Group Members’ Feedback – Scotland 2011
Return Date: Friday 28 October 2011
We remain committed to doing all we can to help ground the work of the Scottish Parliament’s Cross Party Working Group on ME (CPG) in the lived experiences of people with ME in Scotland so that together we can focus on addressing the issues which impact on people’s daily lives.
So we are sending out Feedback forms fro all severely affected members in Scotland
Please see the links below for further information
Contact Details Form
Neither Reasonable Nor Fair
Response to Consultation on replacing Disability Living Allowance (DLA) with a Personal Independence Payment (PIP),
on behalf of people with Severe ME - Reply to consultation Doc
A member's reply consultation
DLA/PIP From letter
DLA Addresses and links info
Information relating to the PACE Trial
Publication of ‘PACE’ Trial Findings in The Lancet’
25% ME Group Press Release
Prof Hooper Press Release
Profess Hooper What is 'Normal'_ Concerns re PACE benchmarks from Malcolm Hooper.rtf
TYMES Trust Press Release
Joint letter to Guardian :-
The letter above, highlights some key concerns about ‘PACE’, including the very low recruitment rate (20%).
It was submitted to ‘The Guardian’ by a group of patients and carers in response to some unfortunate reporting. It was not published.
PACE article does not mention FINE findings - Letter to Lancet
This is being sent on behalf of Professor Malcolm Hooper.
"In view of the content of the "Health Report" broadcast that was hosted by Dr Norman Swan on Australian radio (ABC Radio National) and the comments of Richard Horton, Editor-in-Chief of The Lancet, Professor Hooper has decided to place his complaint in the public domain forthwith so that people can read it for themselves and form their own judgment.
It is important to make very clear that ME/CFS is not a somatoform disorder but a serious multi-system organic disease."
Please click on the links below to view the complaint on a web page or download as a Word doc. Permission to repost.
THE ‘PACE’ & ‘FINE’ TRIALS: UPDATE - 3/8/11
Lightning Process’ Research - we’re not SMILE-ing
The MRC PACE Trial – will the results be reliable?
Response to the FINE Trial
Information you can use concerning the NICE Guidelines
Letter to MP/MSP's
Information concerning Early Day Motion
25% ME Group LP Research Statement
M.E. Awareness Info
ME AWARENESS WEEK 9th – 15th MAY 2010
This year we would like to focus our ME Awareness Week Campaign on the severity and difficulties of living with severe ME.
We have enclosed a Press Release document suitable to send to your local/national press outlet and a 25% Group Information Leaflet which you can send to your local social services, GP surgery, hospital, local library, or give to a carer etc.
We had also planned to include a letter to be sent to your MP/MSP regarding social care and disability benefits. However, we have had to postpone this until after this year’s general elections. (Parliament will not reconvene until 18th May following the general election). We hope to include this with the summer newsletter.
ME Awareness Event at the Scottish Parliament
Please note, for Scottish members, we have included an additional letter regarding an important ME Awareness Event to take place at the Scottish Parliament on 12th May. This should be sent to your MSP. If you do not already know who this is, you can find out whoby visiting the Scottish Parliament website at www.scottish.parliament.uk There is an MSP link on the homepage where you can find details of your local MSP.
Thanks for your help with this.
Remember that we are the only national charity solely dedicated to raising awareness of the severely affected and we require your assistance in doing this on a national level, so please do your best to assist us by taking part in this year’s ME Awareness Campaign.
Many thanks for your help and support with this.
M.E. Awareness Day May 12th 2010 – Reception at Scottish Parliament
2010 Press Release
Members Experiences with ME
Dr Sarah Myhill, Fitness to Practise Hearing (Case Reference: PB/C1-314994282) - 10 April 2010
Letter from 25% ME Group
Dr John Greensmith
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Social Care Strategy Consultation 2009
Please Click here to View Document only word docs attached at the min
Response to Green Paper on behalf of the 25% ME Group
Please Click here to View Document
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25% ME GROUP Statement concerning RSM Conference 2008
Linda Crowhurst Story
ME Awareness 2008 MP letter
Royal Society of Medicine Conference
25% Press release re RSM conference on CFS.doc
Judicial Review details concerning NICE Guidelines
Further Statement concerning NICE
HOUSE OF LORDS DEBATE 2.6.08
Please Click Here to View Document
ALL PARTY PARLIAMENTRY GROUP
APPG Inquiry on NHS Service Provision For People with ME - Terms of reference Doc
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PROPOSAL FOR A PARLIAMENTARY DEBATE ON
CURRENT URGENT PROBLEMS FOR ME PATIENTS
At the All Party Parliamentary Group Meeting on ME held at the House of Commons on 12.7.2007 the principal topic of discussion concerned funding problems for specialist services for ME/CFS patients, experienced particularly in the Norfolk/ Suffolk/Cambridgeshire areas, as reported by Dr Terry Mitchell, but also applying generally throughout the country.
However, John Bercow MP for Buckingham said he had recently visited Dr Charles Shepherd and was aware of many urgent problems affecting ME patients. The MEA’s office was in his constituency and therefore he had a special interest in the subject. He suggested that the combination of a very critical current situation, a reshuffle of ministers and a change in governmental appointments offered a timely opportunity to call for a parliamentary debate on ME. This proposal was endorsed by Dr Des Turner MP, Chairman of the APPG on ME, and supported by all those present. It was stressed that it would be necessary for numerous requests to be made for such a debate, and therefore patients should contact their MPs urgently with such requests. Dr Turner stated there were a number of critical issues to be discussed: funding for clinical services, the general lack of research, several new guidelines (e.g. NICE, DWP, NHS Plus), Dr Gibson’s Report etc. Hence this would need to be a long debate of at least one hour.
It is understood that this proposed parliamentary debate will replace the previously proposed Early Day Motion, following the release of Dr Gibson’s Report.
We urge all our members to write urgently to their MPs requesting an early parliamentary debate on ME
26th June 2007
Press Release concerning Biological Research
DWP- Group questionnaire.doc
This year's ME Awareness Week Campaign is well underway and we are focusing particularly on the problems surrounding the NICE Draft Guidelines for CFS/ME, the DWP CFS/ME Guidelines and the NHS Plus Guidance Documents on ME/CFS. The main ME charities have been united in their response to the above documents and have produced statements on each of them which are enclosed.
As always, we need your help to distribute the enclosed information and standard letters.
Remember that we are the only national charity solely dedicated to raising awareness of the severely affected and we require your assistance in doing this on a national level, so please do your best to aid us in this work by taking part in the following ME Awareness Campaign. Thanks!
Brief explanation of enclosed letters and where to send them:
MP/MSP Form Letter: This should be sent to your local MP/MSP, just add your name, address and signature and post to your local MP at House of Commons, London, SW1A 0AA or your local MSP, The Scottish Parliament, Edinburgh, EH99 1SP.
If you would like to write your own letter to your MP/MSP, then feel free to use the enclosed material to help you do this. Please remember to be as concise as possible, especially if you tell how the disease affects you.
3 Charity Statements: Send these along with the MP/MSP Form letter.
Almost all of the main ME charities have been extremely concerned about the Guidelines which are being (or have been) produced by NICE (National Institute for the Centre of Excellence), the DWP (Department of Works & Pensions) and the NHS Plus Guidance on the Occupational Aspects of the Management of CFS. The overall level of disgust caused by these dreadful documents has managed to unite the main ME charities in order to produce the enclosed statements. We hope by each of our members sending these (along with the MP/MSP form letter) that it will continue awareness of the opposition to these Guidelines by the whole of the ME community
IF YOU HAVE ANY QUESTIONS THEN PLEASE CLICK HERE TO CONTACT THE OFFICE
MP Form Letter.doc
NICE Guidelines Agreed Statement by Charities.doc
DWP ME Organisations Response.V9.doc
NHS PLUS DOC
If you would like to send a letter to your Health Authority Chief Executive, then you can download a letter below and send with the documents also listed in this section
ALL the Chief Executives of the Scottish Health Boards have already been sent the letter and Florida Report
Florida Conference Report
FOR INFORMATION PURPOSES ONLY - NOT FOR GENERAL USE
WE ALSO SENT OUT AS PART OF OUR CAMPAIGNING EFFORTS, LETTER TO VARIOUS OFFICERS
LETTER'S TO VARIOUS OFFICIALS
LIST OF OFFICALS
ADDITIONAL INFORMATION SENT TO THEM
SOME KEY POINTS FROM THE JANUARY 2007 FORT LAUDERDALE.doc
SOME SPECIFIC PROBLEMS.doc
Florida 2007 N.doc
CHARITIES STATEMENT CONCERNING NHS PLUS GUIDANCE DOCUMENTS
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ME AWARENESS WEEK 2006
PLEASE FEEL FREE TO DOWNLOAD AND USE (OR ADAPT) FOR YOUR GROUP DURING ME AWARENESS WEEK
Information for General Practitioners and Clinicians
MP letter 06.doc
Press Release 06 doc
Living with Severe Myalgic Encephalomyelitis DVD Presentation by Linda Crowhurst Dial-Up version 56k
Plese Click here
Living with Severe ME (Windows Media Player) Broadband version 256K
Please Click Here
Living with Severe ME (Windows Media Player) Dial-Up version 56K
Please Click Here
Living with Severe ME (Real Player) Broadband version 256K
Please Click Here
Living with Severe ME(Real Player)
To increase the video screen size, right click your mouse button and choose a size that will be more comfortable to watch
A MERGE DVD OUTLINING BIOMEDICAL RESEARCH WAS ALSO INCLUDED FOR MEMBERS
TO SEND TO THEIR GP/CONSULTANT WITH A COVERING LETTER
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Download MRC letter Please Click Here
Download MP/MSP letter Please Click Here
Download quotes to help you write your own letter Please Click Here
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Severely Affected Presentation
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