What does the ME Association do and why? | January 2016

If you are thinking about joining the ME Association, you’ll want to know what we do in relation to DWP benefits, campaigning, management, medical education, NHS Services, the NICE guideline on ME/CFS, 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.

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 detail in the relevant sections of the MEA website, and in news items covering recent developments.


BENEFITS


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 radically 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 ability to to carry out the sort of functional tasks that are being assessed in a way that is repeatable, reliable, safe and done so in a timely manner. 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 has carried 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 by measuring both fluctuation and severity. We have been discussing the outcome of the EBR with senior medical staff, politicians (including the Minister for Disabled People – Mark Harper MP), civil servants at the DWP and with Dr Paul Litchfield, who carries out an annual independent review of the WCA. The outcome of the evidence based review can be read HERE.

We have a range of regularly updated MEA leaflets covering all the main DWP benefits – ESA, the new Personal Independence Payment (PIP) for people who require help with mobility and care, and Carer’s Allowance – along with detailed information and advice on how to fill in the application forms, which can be a complex time-consuming process.

A report on the fifth and final review of the WCA can be found HERE.


INFORMATION, EDUCATION AND SUPPORT


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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 leaflets and booklets.

MEA Order Form

We have a range of experts – including Dr Nigel Speight (children and adolescent medicine), Dr Abhijit Chaudhuri (neurology), Dr Richard Cantillon (dentistry) and Sue Luscombe (diet and nutrition) – who provide information and guidance.

We believe there are serious defects in the way that medical students and health professionals are educated about ME/CFS. So the latest edition of the MEA ‘Purple Booklet’ is being distributed to GP surgeries throughout the UK – with over 8,000 copies sent out so far. We have also been sending copies to every medical school in the UK with an offer to supply further copies to medical students who want a copy.

As part of the Forward ME Group, Drs Nigel Speight and Charles Shepherd are preparing critiques of the entries on ME/CFS in standard medical textbooks and have already sent a letter to the editors of the textbook edited by Professors Kumar and Clarke.

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 a year.

ME Connect contact details:
Tel: 0844 576 5326 any day of the week between these hours: 10am–12 noon; 2pm–4pm and 7pm–9pm. Email: meconnect@meassociation.org.uk

The MEA played a key role 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 educational videos covering all aspects of ME/CFS arranged by the Dutch group, ME/CVS Vereniging. The videos are available HERE.

We are also working with the producers of a documentary on ME/CFS called What About ME.

An on-line shop has been opened at our website.

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.

We also hold an annual ME Question Time where people can question a range of experts on issues relating to research, diagnosis and management. The 2014 Question Time took place at Wolfson College, Oxford at the end of September.


ILLNESS MANAGEMENT AND NICE GUIDELINE ON ME/CFS


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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 have therefore opposed the decision by NICE to defer reviewing the guideline on ME/CFS and instead placing it in the new static list. Our detailed submission to NICE can be found HERE.

As a member of the Forward ME Group, we met with Professor Mark Baker from NICE at the House of Lords in June 2014. It became clear during this discussion that Professor Baker believes that the NICE guideline is no longer meeting the needs of people with ME/CFS. However, the decision to produce a new guideline is now in the hands of NHS England. Minutes for this meetinG HERE.

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 and NHS England as part of our role in providing high quality patient evidence.

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. Our report on the findings can be downloaded HERE.

Our submission on the Management of people with ME/CFS, that was submitted to the House of Commons Health Committee enquiry into management of long-term conditions, is available HERE.


MEDIA


media

We regularly provide information to journalists who are preparing items and programmes 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 worked on with the Daily Telegraph and another article that appeared in the International Business Times.


POLITICS


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Political campaigning in relation to DWP benefits, NHS service provision, especially in relation to the lack of hospital-based services for people with severe ME/CFS, 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 ME Association and Action for ME act as joint Secretariat for the All Party Parliamentary Group (APPG) on ME at Westminster, which is chaired by Annette Brooke MP.

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. Recent meetings have discussed child protection issues and education with Edward Timpson MP, Minister for Children and Mrs Isabelle Trowler, Chief Social Worker for Children in England and the future of the NICE guideline on ME/CFS with Professor Mark Baker.

Minutes for APPG and Forward ME Group meetings can be found in the news archive on the MEA website.

In the run up to the 2015 General Election we will be preparing a list of questions relating to benefits, management and research that people will be able to put to the local candidates.


RESEARCH


research

We raise funds for, and support, biomedical research into the underlying causes and treatment of ME/CFS. This is done through our 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 have been focused on research into the psychosocial model of causation and management.

The MEA has taken an active role in setting up the UK ME/CFS Research Collaborative (UKRC), which is chaired by Professor Stephen Holgate. The collaborative, which followed on from our membership of the MRC Expert Group on ME/CFS research, 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 Research Collaborative held a very successful two-day research conference at Bristol University at the beginning of September. The conference included a patient session on the Monday afternoon. A summary of the conference presentations can be found HERE.

The 2015 conference will be held in Newcastle on October 13 and 14.

We also raised funds to enable Professor Ian Lipkin to speak at a separate patients-only meeting in London on September.

With ME North East, we co-sponsored a research conference in Newcastle on Tuesday November 4. More details HERE.

We attend most major research conferences. Dr Shepherd’s on-line report on the IACFS/ME conference in San Francisco in March 2014 can be found HERE.

A report on the May 2015 Invest in ME research conference will appear in the August issue of ME Essential magazine.


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 UK ME/VFS Biobank at University College London – where blood samples are being collected, processed and stored for the benefit of researchers who require samples from well defined people with ME/CFS. We now have received 350 blood donations – which converted into 16,000 samples – from people with very carefully defined ME/CFS (Canadian and Fukuda criteria). The Biobank has been awarded a research grant of over £1million from the National Institutes of Health in America to carry out a three-year study into the role of reactivated viral infection and immune system dysfunction in ME/CFS.
Total cost for UK work: approximately £160,000 a year

ME Biobank website

Report on first two years work at the ME Biobank

Our Big Give Christmas Appeal has raised £35k-£40k to help secure the future of the Biobank. This money will be used in 2015 to open up the Biobank to research groups who want to make use of the samples and to replace samples that are being used.

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

Research into immune system dysfunction – Professors Stephen Todryk, University of Northumbria and Julia Newton, University of Newcastle.
Total cost = £19,500

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, Surrey.
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

The MEA RRF has provided £5,000 towards the cost of muscle research being carried out by Dr Joanna Elson, Mitochondria Research Group at the University of Newcastle.

We are also closely involved in research involving post-mortem tissue samples and are aiming to set up an ME/CFS ‘brain bank’ where tissues can be collected and stored for research.


MEA MEMBERSHIP APPLICATION FORM


Details of our membership offers and a downloadable membership application form HERE.


MEA ADMIN INQUIRIES: 01280 818964 or 818968



FUNDRAISING SUPPORT


Membership fees alone cannot cover the cost of all of our work.  We do not receive government grants or other outside assistance to do this.  We rely heavily on event fundraising and donations to ensure that we can be there to give ME sufferers the long-term support and the hope that they urgently need.

If you would like to fundraise for The ME Association in any way please contact our Fundraiser Helen Hyland.  She would be delighted to help you – with practical advice, moral support, contacts, and fundraising supplies.  Helen.hyland@meassociation.org.uk or 01280 838964

You can now create a fundraising page on the web using The ME Association’s special area at JustGiving.