I wanted to end this week of M.E. Awareness by asking you to do me a favour. Please do one of these three things below to help M.E. sufferers like me. They all involve a key number: 100,000.
£100K is the amount needed to open an M.E. Centre of Excellence in Norwich, UK. It will concentrate on researching into biomedical causes and cures for M.E. At present, there are very few research projects into M.E. the UK (or indeed the world).
As I look down the list of medical trials on the NHS website I am depressed by two things. One is that there are so few for M.E. The funding for M.E. research is minimal.
The other is that the small pot research money is being squandered on cognitive behavioural ‘treatments’, which don’t cure M.E. Regrettably, the main NHS recommended ‘therapy’, Graded Exercise Therapy, has been found to make M.E. patients worse.
At the time of writing, there are just 15 clinical trials listed for ‘chronic fatigue syndrome’. Depending on the criteria they use, these may not even cover M.E. patients but rather focus on a different set of patients who have long-term fatigue as a main symptom. Only two mention myalgic encephalomyelitis by name. Only four are investigating any kind of intervention that isn’t a talking or exercise ‘therapy’ (cocoa solids and Vitamin D are being investigated as potential treatments.)
In contrast, if you search for clinical trials for M.S., another debilitating life-shortening neurological illness, you will find there are 711 trials for M.S., the vast majority exploring potential pharmacological interventions. 15 – vs. 711. There are approximately 85,000 M.S. sufferers in the UK and 250,000 M.E. sufferers, 62,500 of whom have severe M.E. (bed bound or housebound). ME affects 2.5 times more people than MS. Yet there is 50 times more research for M.S. than M.E.
For severe sufferers like Jenny Rowbory, who have been bedbound for years and show no signs of recovery, biomedical research centres like this one are crucial in finding a cure.
At the moment, the money is trickling in and has reached £25K, but much more is needed. Fundraising and campaigning is slow. This is because the ones who are giving are primarily sufferers of M.E. – who are in very poor health, often not earning, and have very limited energy to give – and their carers. We need more help.
Could you give? Do you work for a company that gives to charities? Please consider a gift to Invest in M.E. This link has a number of ways of giving, including ones that don’t cost you any money!
Easyfundraising donates money to a charity every time you spend money online at no cost to you. Please consider making Invest In ME your Easyfundraising charity.
£100K is also, coincidentally, the amount of money that the Andrew Lansley’s Department of Health team spent on refreshments in 3 months in 2012.
That’s £100K. In three months. On tea and biscuits.
If you think it is wrong that the government’s Department of Health refuse to spend money on investing in research for a crippling illness, whilst spending vast amounts of money on trivia, please write and tell them so.
Could you write to your M.P.? Could you ask them to specifically spend money on biomedical research for M.E.? Could you ask them to assign more specialist doctors to M.E. sufferers, rather than psychiatrists who dismiss their disease and Graded Exercise Therapy centres which make M.E. patients worse? Could you ask them to adopt the International Consensus Criteria for diagnosis and research so that we make sure we’re researching M.E.?
100K is also the number of signatures that is needed on an e-petition to secure a debate in parliament. If you are unable to do the first two things, I would really appreciate it if you could sign this petition for biomedical research into M.E. There is also a petition for the government to apologise for the treatment of M.E. as the Norwegian Government did. The links are below.
“Justice will not be served until those who are unaffected are as outraged as those who are.” – Benjamin Franklin
We need biomedical research to find a cure for M.E. We need your help. Please give, write, sign. Thank you.
You can text your donation by texting IBRF33 £2 or IBRF33 £5 or IBRF33 £10 to 70070.
For further details visit the Invest in M.E. website or read about the plans for the centre of excellence.
E-petition for better research into M.E. – closing date 13/03/13
Petition for the UK government to apologise to M.E. patients. – closing date 24/10/12.