If you are thinking about joining The MEA you’ll want to know what we do in relation to benefits, campaigning, management, political activity and research, as well as providing much needed support and understanding for people with ME/CFS. Along with the reasons why… So here’s a brief summary of what goes on ‘behind the scenes’ at The MEA.
If you want to find out more about any of the topics below, they are covered in far more detail in the MEA website summary of the September meeting of the MEA Board of Trustees as well as in news archive items on the MEA website.
BENEFITS
We form part of a Department and Work and Pensions (DWP) Fluctuating Conditions Group. The group has produced comprehensive recommendations on ways in which the current benefit assessment procedures need to be changed – especially in relation to the Work Capability Assessment (WCA) descriptors that are used to assess eligibility for Employment and Support Allowance (ESA).
Why? Because the current system of assessment for DWP benefit applications fails to deal with the problems faced by people with fluctuating medical conditions such as ME/CFS – in particular the inability to sustain and reliably repeat the sort of functional tasks that are being assessed. As a result, far too many people with ME/CFS are having benefit applications refused first time round and are only succeeding after going to appeal.
Fluctuating Conditions Group Report
The DWP is carrying out an evidence-based review (EBR) of our recommendations for changes to the WCA. Our aim is to make the WCA descriptors fair and effective for people with fluctuating medical conditions. We are due to meet the DWP in November for a further progress report on the EBR.
We attend regular meetings with senior medical advisors and ministers at the DWP, and with Dr Paul Litchfield who has taken over the annual reviews of the WCA, to discuss a range of benefit concerns.
We have a range of regularly updated MEA leaflets covering all the main DWP benefits and how to fill in the application forms – which can be a complex process – including a new leaflet covering PIP (Personal Independent Payment). A further leaflet is now being prepared on how to fill in the PIP application forms.
INFORMATION, EDUCATION AND SUPPORT
The provision of high quality information and support for people with ME/CFS, along with educational material for health professionals, is a high priority for the MEA. So we are constantly updating over 70 MEA information leaflets and booklets.
MEA Order Form
We have a range of medical experts – including Dr Nigel Speight, children and adolescent medicine and Dr Abhijit Chaudhuri, neurology, Dr Richard Cantilon, dentistry – who provide addition information and guidance to The MEA.
We believe there are serious defects in the way that medical students and health professionals are educated about ME/CFS. So the 2013 edition of the MEA purple booklet is being distributed to GP surgeries throughout the UK – nearly 4,000 copies sent out so far. We are also in the process of delivering copies to every medical school in the UK with an offer to supply further copies to medical students who want a copy.
How to obtain MEA purple booklet
ME Connect, our professionally supervised telephone and email information and support service, is dealing with almost 4,000 messages and enquiries per year.
ME Connect contact details:
Tel: 0844 576 5326 any day of the week between 10am–12 noon; 2pm–4pm and 7pm–9pm.
The MEA played a key role in providing answers to questions from members of the public in an NHS Choices online clinic in August 2013. Over 200 Questions and Answers on issues relating to all aspects of management in both adults and children have been archived and remain available on the NHS Choices website
Dr Shepherd and Dr Speight have recorded a series of videos covering all aspects of ME/CFS. These are professionally produced and edited, and are due to be released at weekly intervals in the New Year. We are also working with the producers of a documentary on ME/CFS called ‘What About ME’.
The MEA website is undergoing a widespread review and the introduction of an on-line shopping facility.
We have a very active MEA Facebook page where discussions on all aspects of ME/CFS take place.
The MEA is also very keen to receive feedback from members (and non members) and we have a monthly poll on the MEA website to gauge opinion on a wide range of ME/CFS topics.
MANAGEMENT
The MEA believes that the current NICE guideline on ME/CFS needs to be thoroughly reviewed and revised.
Why? Because significant parts of the guideline are not fit for purpose and NICE places far too much emphasis on the use of CBT and GET while giving very little support to Pacing.
We are therefore opposed to the proposal from NICE to defer reviewing the guideline on ME/CFS and instead placing it in the new static list. We have prepared a detailed submission to send to NICE – this will be placed on the MEA website on October 23rd
We are in the final stages of preparing a report on the results from the patient questionnaire survey into all aspects of CBT, GET and Pacing. This report will be submitted to NICE as part of our role in providing high quality patient evidence to organisations such as NICE.
We believe that far too many unsubstantiated therapeutic claims are being directed at people with ME/CFS by the alternative and private medical sectors. So we regularly monitor adverts that are aimed at people with ME/CFS and refer them, when necessary, to the regulatory authorities. Complaints to the Advertising Standards Authority relating to adverts for the Lightning Process and the ME Cure Clinic have recently been upheld.
The largest ever patient survey of management options was carried out by The MEA. The MEA Management Report on the findings can be downloaded HERE:
MEDIA
We regularly provide information to journalists who are preparing stories on ME/CFS.
Why? Because we want to improve public recognition and understanding of ME/CFS – an example being the half page article that we recently worked on with the Daily Telegraph
POLITICS
Political campaigning in relation to benefits, NHS service provision and research forms a key part of our work.
Why? Because we need to improve political awareness and create a group of politicians who can help us to campaign over issues such as benefits, NHS services and biomedical research.
The MEA and AfME act as Secretariat for the All Party Parliamentary Group (APPG) on ME at Westminster. A meeting is being held with the Chairman (Annette Brooke MP) and officers on October 23rd to plan the timetable for the 2013 – 2014 session.
We are in regular contact with colleagues in Northern Ireland, Scotland and Wales regarding NHS services and play an active role in political initiatives taking place in Scotland.
The MEA plays an active role in the Forward ME Group of charities chaired by the Countess of Mar.
Minutes for APPG and Forward ME Group meetings can be found on the MEA website.
RESEARCH
We raise funds for, and support, biomedical research into the underlying cause and treatment of ME/CFS. This is done through the Ramsay Research Fund – where all donations are ring-fenced for research-related activity. There are no payments for salaries or administrative costs as these are all covered by general funds.
Why? Because far too much emphasis, and funding, has been placed on research into the psychosocial model of causation and management.
The MEA has been playing an active role in setting up the UK ME/CFS Research Collaborative, which is chaired by Professor Stephen Holgate. The collaborative is bringing together new and existing researchers, research funding charities, the Medical Research Council and National Institute for Health Research, and the pharmaceutical industry. The UKRC is organizing a major two day research conference in 2014.
RESEARCH: RAMSAY RESEARCH FUND
The MEA Ramsay Research Fund is raising funds to help fund a clinical trial of Rituximab here in the UK. We have currently raised about £60,000 of ring-fenced funding.
Why? Because we believe this is the most important development so far in finding a drug treatment that appears to alter the underlying disease process – rather than just treating symptoms.
More on what is The MEA doing about Rituximab
The MEA RRF is currently co-funding:
The ME Biobank at University College London – where blood samples are being processed and stored for the benefit of researchers who require samples from well defined people with ME/CFS. The ME Biobank was recently awarded a research grant of over £1million from the National Institutes of Health in America to carry out a 3 year study into the role of reactivated viral infection and immune system dysfunction in ME/CFS. Total cost for UK work: approximately £160,000 per annum.
ME Biobank website
The ME Disease Register at the New University of Buckingham – where details of people who want to donate blood and tissue samples will be collected. Funding forms part of Biobank funding.
Research into abnormalities in mitochondrial function in skeletal muscle – Professor Anne McArdle et al, University of Liverpool. This research is being jointly funded with the MRC. Total RRF cost = £30,000
The MEA RRF is currently funding research into:
Effect of exercise on cognitive and immune system function – Dr Amolak Bansal et al at St Helier Hospital. Total cost = £ 32,000
Post-exertional malaise – Professor Jo Nijs et al in Belgium and Dr Lorna Paul in Glasgow. Total cost = £31,000
Sleep disturbance and management – Professor Jason Ellis et al at University of Northumbria and Professor Julia Newton at University of Newcastle. Total cost = £15,000
We are also closely involved in research involving post-mortem tissue samples and are aiming to set up an ME/CFS ‘brain bank’ facility where tissues can be collected and stored for research purposes.
Details of previous research that has been funded by the RRF, along with publication details, can be found in the Research section of the September Board of Trustees meeting website summary.
MEA MEMBERSHIP APPLICATION FORM
Details of our membership offers and a downloadable membership application form HERE.
MEA ADMIN INQUIRIES: 01280 818964 or 818968