Can you write about ME/CFS to your General Election candidates? | 20 April 2015

The General Election takes place on May 7, and we know that people may want to contact their local parliamentary candidates to inform them about issues of key national concern to people with ME/CFS.

You may also want to raise issues of local concern, especially in relation to subjects such as lack of care in the community, lack of medical education for local GPs and problems with hospital based referral services for people with ME/CFS.

So The MEA has produced a basic letter that can be used as it is, or modified to meet your individual requirements.

We would also make the following general points about writing to parliamentary candidates and current MPs:

1 Election candidates are very busy people. They will be receiving vast amounts of information and requests from individuals, charities, commercial organisations and pressure groups in the coming weeks. Any written communication needs therefore to be short and to the point. You need to raise a few key points or questions – no more than 5, as we have suggested – and in a way that invites a reply.

2 You need to play politics as well. If your MP is in a safe seat with a large majority, there's not much point in contacting all the ‘no hope' candidates. But if you live in a marginal seat, where the top candidates are chasing every single vote, individuals who write a decent letter will get noticed.

3 All candidates will be holding public meetings, surgeries and making door-to-door visits, etc. So it can be far more effective trying to set up a face to face meeting, possibly involving a group of people with ME/CFS, with the candidates. If you want to do this get in touch with the party election agent.

4 You could send this letter as an email but it will probably be far more effective if sent as a personally signed paper letter.

5 Include your name and full postal address, and possibly your phone number – very important

6 If you do contact your candidate/s and get a useful response please let us know, or post it on our MEA Facebook page.

LETTER TO ELECTION CANDIDATES

Dear xxx

I have an illness known as ME (myalgic encephalomyelitis) which affects around 250,000 people – children as well as adults – here in the UK.

This means there are around 400 other people in your constituency who also have ME – some of whom will have severe ME meaning that they are housebound or even bed bound.

I would therefore be grateful if you could devote a few minutes of your time in the run up to the general election to look at 5 key concerns that affect people with this illness and let me have your thoughts on what needs to be done at a government level.

The five key concerns are:

1 DWP BENEFITS

Along with other fluctuating medical conditions, people with ME/CFS often have great difficulty in obtaining DWP sickness and disability benefits to which they should be entitled and are only able to do so after going to appeal.

2 MEDICAL EDUCATION

Many people with ME experience long delays, sometimes over a year, in obtaining a formal diagnosis. They are often given inadequate, or even inappropriate or harmful advice on management in the meantime. This is because medical education on both the diagnosis and management of ME/CFS at undergraduate and postgraduate level is often inadequate or even non existent.

3 MANAGEMENT

The 2007 NICE guideline on ME/CFS is no longer meeting the needs of people with ME and needs to be fully revised. This was confirmed by Professor Mark Baker from NICE when he spoke to a meeting of ME/CFS charities at the House of Lords in June 2014. However, the NICE guideline has been placed on the inactive ‘static' list by NICE and there are no plans by NICE to make any revision.

4 RESEARCH

Although the Medical Research Council has identified a list of high priority biomedical research items, funding for key areas of biomedical research, which also includes clinical trials of drug treatments and research infrastructure such as the ME Biobank at the Royal Free Hospital still has to be largely funded by the charity sector.

5 NHS SERVICES

People with ME in many parts of the UK still do not have a local hospital-based specialist service to whom they can be referred by a GP for further advice on either diagnosis or management. For children and adolescents, the availability of specialist referral services is extremely patchy – despite ME/CFS being one of the commonest causes of long term sickness absence from school. For the 25% of people who have severe ME – being housebound or bed-bound – domiciliary services and in-patient facilities are almost non existent.

Optional insert for comment on a specific local problem:

Here in xx …

As you can see there are very real concerns about the way in which the Department of Health is dealing with an illness that affects around 250,000 people in the UK and which is costing the country an enormous amount of money in lost revenue through the prolonged ill health and the disability it causes.

The current All Party Parliamentary Group on ME is aware of these concerns and my final point is to therefore ask whether you will be joining the APPG on ME after the general election.

Optional insert:

I would also like to discuss these concerns with you in person if you are able to do so.

The way in which you respond to this letter will help me to decide on which candidate and party to vote for on May 7.

I therefore look forward to your response

Yours sincerely

xxxx

ADDITIONAL BACKGROUND INFORMATION

This website has some useful general information on the general election, political strategy, parliamentary constituencies, and how to get in touch with candidates:

http://election2015mecfs.blogspot.co.uk