Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
This month the ME Association website survey is asking what you think should be the top issues for MPs to lobby about in the new parliament. We also wanted to give you the opportunity to ask your candidates ahead of the general election what their thoughts were on these main concerns.
- Don’t forget to register to vote. The deadline for voter registration is 21 November if you live in Northern Ireland, and 26 November if you live in England, Wales or Scotland. Postal ballots are a good option if you are unable to leave your home. Full details are available here and on your local authority’s website.
Below you will find a selection of issues that have attracted most votes to date from the survey, and some of the additional comments and concerns shared by members of the M.E. community.
You might feel that these concerns are ones that you share, or you might have more personal or local concerns that you want to canvass your candidates about and whose response might influence the way in which you cast your ballot on 12th December.
We have created a template letter that you can use to email or write to your candidates. You can add the issues of most concern to you and remove those you feel are less relevant.
We recommend you personalise the letter where possible and, if you are able, we suggest handwriting the letter as this might improve the chance of a response.
- Read some of the feedback we have already received to our website survey. It might help you to decide if other issues are just as important.
- The survey itself can be located on the homepage of this website – about halfway down the main page. Please vote if you haven't done so already.
If you aren’t able to contact your local candidates before the General Election on 12th December, then don’t worry. If you want, you can still use the template letter (suitably edited) and raise your concerns with your (new) member of parliament after the election.
Either way, it will be useful to know what your candidates have/elected MP has to say about the issues you are most concerned about. And we’d be very grateful if you would share those responses with us.
List of Candidates
The list of your local candidates is now available, and you can easily locate their details and contact information.
- Official electoral information can be located on the Electoral Commission website – just enter your post code to read local details.
- This Independent Website provides public information about who will be standing in your area and other details relevant to local elections.
- Candidate information is also available on your local authority’s website.
You can also find information about your local candidates by watching out for the post. Every candidate will be campaigning, and you are sure to receive something through your letterbox.
If you do contact your local candidates and obtain replies to the issues you raise, then do please share them with us or post your feedback on our Facebook page in the ‘visitors section’.
Template Letter
Dear XXXX,
I am disabled by myalgic encephalomyelitis, or M.E. It is a neurological disease that has devastated all aspects of my life.
As I consider my vote in the general election, I would be grateful to hear from you about the issues that I believe are key to improving the circumstances of not just me, but also the c.400 people similarly affected by M.E. in the constituency.
- M.E. affects around 260,000 people in the UK. It can strike people of any age or ethnicity, and it can occur at any time of life. It often follows a fluctuating course but for some it can be progressive, and it can affect people for years, decades or for life.
- It is the biggest cause of long-term sickness absence from school and 25% of people are severely affected at any one time; meaning they are bed-bound, have considerable mobility and cognitive issues, and require care and support.
- Those who are worst affected are wholly dependent on care for considerable periods and may require tube-feeding. People can and do die from this disease and yet it remains largely misunderstood. There are no effective treatments for people with M.E.
Carol Monaghan, MP, led several successful debates about M.E. in both Westminster Hall and the House of Commons recently. I hope that if these initiatives continue in the new parliament, as a newly elected member you will embrace them.
If you require additional information about any of the issues I raise below or about the role of the charity sector in helping to raise awareness, provide support and information and the efforts to invest in vital research, then please contact the ME Association.
In the meantime, I would be grateful to hear your views on the following key issues:
1. Government Funding for Biomedical Research
At present, the majority of biomedical research is being funded by the relatively small charity sector despite it being given high priority status by the Medical Research Council. When will parliament designate ring-fenced funding and make a commitment to finding the cause and effective treatments for M.E.? It has happened in America and Australia, but why not the UK? We need bigger and better research that seeks to replicate and/or build upon the many pilot studies that have begun to explain this cruel disease, if we are ever to find truly effective treatments.
2. Providing accurate and continuing medical education for all health professionals
The National Institute for Health and Care Excellence (NICE) has been working with charity and patient representatives on a new clinical guideline for ME/CFS which is expected in October 2020. But there will continue to be a pressing need to improve the way in which patients are treated by the NHS. This can only happen through accurate and continuing medical education initiatives supported by parliament. Diagnostic delays, inadequate care and support, perpetuation of inaccurate stigma and poor or harmful medical advice can all be corrected with better medical education.
3. An end to the harmful stigma that still surrounds M.E.
For decades people with this disease have had their self-confidence and standing eroded by persisting stigma that their disability was ‘not real’ and undeserving of support. This has been disproved by numerous research studies, eminent medical professionals who have become experts in the field as well as by independent medical and scientific experts who have published influential reports. It is high time that parliament helped all those who suffer from M.E. by putting an end to the perpetuating and harmful myths.
4. Fair and accurate medical assessments for DWP benefits
Despite Government assurance and repeated discussions with benefit assessment agencies by charities, the assessment process for ESA and PIP remains a postcode lottery for too many applicants and home assessments for those too sick to travel are often impossible to obtain. Awareness of M.E. and the functional impairments it can induce are not appreciated by these agencies and it adversely affects applicant outcomes. People in genuine need are not getting the support to which they should be entitled, and the process of application and assessment remains one of great anxiety and stress.
5. An end to the inappropriate use of CBT and/or GET by the NHS
The current NICE guideline on ME/CFS is finally being rewritten after many years of advocacy effort. Recommended NHS management advice is out of date and inaccurate. Health authorities in America, Australia and elsewhere have all now recognised the potential harm associated with cognitive behavioral and graded exercise therapy illness models when applied to people with M.E. and they have been withdrawn. Personalised management employing appropriate and safe forms of Pacing – until such time as more effective treatments become available – with pharmacological symptom treatment where possible, should be endorsed by parliament. Patients should not be exposed to potential harms and healthcare professionals should receive updated and accurate training.
Thank you for taking the time to read my concerns. I hope very much to hear your thoughts about them soon.
Yours sincerely,
[Full name] [Full Address] [Other contact details]
[Include MEA contact details:
The ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks, MK18 4DF. Telephone: 01280 818963. Website: https://meassociation.org.uk/contact-us/ ]
The ME Association
Real People. Real Disease. Real M.E.
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and help ensure we can inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.
ME Association Registered Charity Number 801279