Today, 12 May 2015, is ME Awareness day. Last year, I gave you a glimpse into my life with this illness, via a video I made following myself for one day. This year I wanted to do something a little more positive. That video was my present, this blog is about my hopes for the future.
I asked members of an online community of ME (also known as CFS) and Fibromyalgia sufferers: If you woke up cured tomorrow, what would you do? I got a total of 55 responses, here is what they said:
Interestingly, one of the key words/phrases that came up repeatedly was work, with the word job also making a prominent appearance. Yes, that’s right. If these people woke up tomorrow, with the pain, the constant exhaustion, the numerous and distressing digestive and neurological symptoms gone, then one of the key things they would like to do is get a job, or increase their working hours. Far from the work-shy malingers we are often painted as, this is a patient group that is keen to get their lives back and contribute to society.
Other key words include different forms of exercise: Walk, exercise, run, dance, bike-ride; and doing things with those close to them: friends, family, husbands, kids.
One of the most heart-breaking phrases that kept coming up was “like I used to“. These people, while still holding onto their dreams of travelling, achievement and success, also want to be able to do those “normal” every-day things that other people take for granted: cook, work, walk their dogs, a few mad people even said they missed cleaning.
I like to think of the word cloud above not just as a glimpse of what could of been, but of what could be. There is currently very little money going into ME/CFS research, meaning in turn, very little research is being done. I’d hate to think how much I alone cost society through my high use of the NHS, my inability to work, my use of benefits, the wasted education, the student loan that isn’t being paid back, let alone the skills and experience I could be making use of to the benefit of some business out there.
Surely if someone sat down and did the sums, looked at the promising (often crowd-funded) research that is being done, figured out what the cost is of doing nothing: leaving a group of patients who want to become economically active members of society again ill in their beds, rather than funding the research to find viable treatments, tests and, dare I even hope, a cure, they would realise that the investment is worthwhile.
That apart from the cost of human life when patients are either left alone, without help and unable cope any more with the suffering day-in and day-out, or are too physically weak to swallow food, whose hearts or livers eventually fail them, apart from that, it would most likely cost a lot less in terms of government funds to do the research and treat us, rather than leave us with already over-stretched NHS resources, that can only offer help with managing the condition and managing the pain through psychological therapies, pacing and pain-killers, claiming Employment Support Allowance and Personal Independence Payment (if we’re lucky and have seen enough NHS specialists to have compiled a huge list of medical evidence to support our claims) along side benefits for housing and carers, treating the depression that comes from eventually being discharged from ME clinics and left to cope on your own because they’ve done all they can for you and from losing your independence, your self worth, your career, your life. This is a system that doesn’t make sense.
I have hope that one day we will find a cure for ME. In the meantime, help us get our voices heard. Please help our cause by either spreading the word about ME (I’ve attached links below you may find useful) or donating to research (details below)
You can help fund research and awareness by donating to one of these deserving causes:
UK Rituximab trial for M.E patients:http://www.ukrituximabtrial.org or text: “RTUX66 £2″ (or £5 or £10) to 70070
Invest in ME: http://www.investinme.org
ME Research UK: http://www.meresearch.org.uk
Action for ME: http://www.actionforme.org.uk
ME association: http://www.meassociation.org.uk
The Association of Young People with ME: http://www.ayme.org.uk/home
Or for more information about ME/CFS:
The spoon theory: (a very good explanation of what it is like to live with a chronic illness like ME)
About ME: a factsheet by Action for ME detailing what the illness is, symptoms and treatments