Dear
[Local MP candidate]
I have an illness known as M.E. (Myalgic Encephalomyelitis), also often referred to as Chronic Fatigue Syndrome (CFS) or ME/CFS, which affects around 250,000 people¹, children as well as adults, here in the UK. Around 25% of people with ME/CFS are severely affected² – meaning that they are wheelchair-bound, house-bound and in some cases bed-bound. Within North West Hampshire, this estimate would mean that over 300 adult constituents are affected, with over 75 of these sufferers house or bed-bound.
In 2006, it was estimated that the economic burden to the UK of M.E was £6.4 billion per year³, due to, but not exclusively, loss of earnings and patient management costs. In North West Hampshire, this means a local economic burden of £7,680,00 per year. For children and adolescents, ME/CFS is the commonest cause of long-term sickness absence from school4.
[I added a section here on how ME has affected me to personalise the letter]
I would therefore be grateful if you could look at five key concerns below that affect people with ME/CFS and let me have your thoughts on what could, and should, be done at a government level if your party is elected on June 8th:
- DWP BENEFITS
Along with other fluctuating medical conditions, people with ME/CFS often have great difficulty in obtaining DWP sickness and disability benefits (ie ESA and PIP) to which they should be entitled. They are often only able to do so after going through a long and stressful appeal process.
- MEDICAL EDUCATION
Many people with ME/CFS experience long delays, sometimes over a year, in obtaining a formal diagnosis. As a result they are often given inadequate, or even inappropriate or harmful advice on management. 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.
- MANAGEMENT
The 2007 NICE guideline on ME/CFS does not meet the needs of people with ME/CFS and requires a comprehensive revision. 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, there are still no firm plans in place carry out a much-needed revision.
- 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/CFS Biobank at the Royal Free Hospital, still has to be largely funded by the charity sector.
- NHS SERVICES
In many parts of the UK, people with ME/CFS still do not have a local hospital-based multidisciplinary 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. And for the 25% of people who have severe ME/CFS, domiciliary services and in-patient facilities are almost non existent.
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.
IF ELECTED, PLEASE HELP FORM A NEW ALL PARTY PARLIAMENTARY GROUP ON ME
The current All Party Parliamentary Group (APPG) on ME is aware of these concerns and before the election was announced was in the final stages of conducting an inquiry into social care for people with ME/CFS.
So my final point is to ask whether you would be willing to be involved with a new APPG on ME after the General Election?
Thank you for reading this.
I look forward to your response.
Yours sincerely
[Your name here]
- NHS website - http://www.nhs.uk/conditions/chronic-fatigue-syndrome/pages/introduction.aspx
- Pheby, D; Saffron, L (2009), "Risk factors for severe ME/CFS" (PDF), Biology and Medicine, 1 (4), eISSN 0974-8369
- Bibby J, Kershaw A. How much is M.E. costing the country? Survey & Statistical Research Centre. Sheffield Hallam University, 2006.
- Dowsett, E; Colby, J (1997), “Long Term Sickness Absence due to ME/CFS in UK Schools: An Epidemiological Study With Medical and Educational Implications”, Journal of Chronic Fatigue Syndrome, DOI: 10.1300/J092v03n02_04