By Dr Francis Teeney
Member of Division of Clinical Psychology (BPS)
It is with deep and profound regret that I have to declare that thus far the annual M.E. Awareness Week has been somewhat of a failure given that we have failed to get it on to the mainstream medical agenda. I hasten to add that this is not to pour scorn or ridicule upon all those brave individuals and groups who strive very hard to make it an annual success. Let’s face it, people who suffer from M.E. have precious little energy to invest in a week long campaign, given that many of them struggle even to get out of bed. They therefore depend on friends and family to try to raise awareness of their suffering for them and this is like trying to kiss someone through a messenger. So I applaud the people who try valiantly each year to raise awareness of M.E.
If we compare other Annual Awareness Weeks concerning Cancer, Autism and Parkinson’s etc we do encounter a level of success, witnessed by people collecting in the streets and shopping centres, running coffee mornings and wearing the appropriate badge or ribbon of one of the aforementioned groups.
Perhaps it is easier for them because cancer can be seen, its effects can be witnessed and most of us have walked behind coffins of friends and loved ones who have been taken by this awful disease. consequently, I do not begrudge them their success in raising awareness for their particular cause.
When it comes to dealing with M.E. we are engaging in battle with an unknown entity. Every few months witnesses another report of a possible cause that delivers false hope only for that research to be undermined because the trial has been so small and the results cannot be replicated. Conservative estimates of 250,000 sufferers in the UK and 1 million sufferers in the USA make M.E. an inflamed boil on the buttocks of the world. Global figures are hard to estimate as different criteria of diagnosis are employed in different countries. But we are looking at many millions across the world, and precious little if any global funding is being made available and yet the numbers rise every year. We witnessed appropriate government responses to the Ebola outbreak and the Zika virus outbreak. Thankfully global governments swung into action to combat these two plagues on mankind. It is with complete bewilderment that the numbers of people that are suffering globally from M.E. have provoked virtually no global government intervention at all. I recently heard that with regards to M.E., the UK Health Minister Jeremy Hunt, was doing the work of two men – Laurel and Hardy.
I wonder what would happen if I got a gun and went to London Zoo and shot Chi Chi and Cha Cha, the giant pandas. No doubt the tabloids would demand we recall Parliament and bring back hanging but yet the annual increase in people with M.E. does not seem to stir any meaningful political intervention from mainstream media or high ranking politicians. If you are unfortunate enough to be afflicted with M.E. in the UK or USA, sadly Billy Graham couldn’t save you.
I live in Northern Ireland where the only M.E. specialist retired 8 years ago and has never been replaced – one specialist to cover the whole country for two hours per week. All of the aforementioned issues only create a scenario where we are trying to solve a Rubic’s cube that is fighting back.
Over the years different government responses have made the job of those trying to raise awareness of those with M.E. much more difficult. One of the more famous ones was that ‘it was all in our heads’. But just to be on the safe side they introduced a ban on sufferers donating blood in case we might just pass it on. How do you pass on something that is all in your head? – we should never underestimate the power of stupid. To quote Socrates: “The problem is that they do not know that they do not know”.
Then we had the strategy of giving it a different name and it was referred to as ‘Chronic Fatigue Syndrome’, as if by calling it something else it means less, and infers stigma upon its previous name, M.E. Roses by a different name smell the same!
So what are we then to do about raising the profile of M.E. Awareness Week? I firmly believe that we need to stop the infighting. We have too many vested interest groups and not enough coming together in common cause. If we found a cure for M.E. tomorrow morning some notable individuals would be out of a job tomorrow night. Secondly, we can follow Einstein’s advice and stop doing what we have always done and each time expecting a different result. You can hack a path through the jungle but what good is it if you are heading in the wrong direction. Rather we should make plenty of noise in an effort to get attention to shine a spotlight on our plight. In this we do need the help of friends, family and our elected politicians throughout the world. I am grateful to Jeffrey Donaldson MP and to Mike Nesbitt MLA who both tried to raise the plight of people with M.E. – we need more politicians to ask questions at the highest level.
The UK government has had a political drive in getting disabled people back to work – many would say harassing people back to work. M.E. has unfairly been labelled by those ignorant of its devastating impact as a slacker’s charter and therefore we suffer disproportionally for this with regards the government work initiative for the disabled. Probably the scariest words an M.E. sufferer hears is “I am from the government and I am here to help you!”
I deplore the lack of government funding into the research and treatment of M.E. Money wasted on inappropriate back to work schemes would be better utilised in finding a cure. Indeed if they spent the same amount of time, money and effort on research / treatment as they do in trying to reduce M.E. sufferers benefits we might just find a cure.
My thoughts recently have turned to ‘Plato’s Ideal Plane’. Whereas we might be in a state of imperfection at present while we endure this bizarre affliction, on another level Plato would say that we are living a perfect life free from our imperfections and afflictions. It is indeed possible to reach the perfect plane if we were willing to kick up such a rumpus during M.E. Awareness Week that governments across the world would be forced to react as they did in other very recent global outbreaks.
So while M.E. Awareness Week has been a failure thus far, there will certainly be a tipping point when the numbers affected will be so great that the World Health Organisation will force international co-operation and standardisation: the vested interest groups will be forced to row in the same direction and demand funding and research in order to find a cure and in doing so make M.E. Awareness Week totally unnecessary.
I want to personally thank all those who thus far have contributed to the Annual M.E. Awareness Week and I pray that you take my comments not as criticism but as inspiration, to dare to do the different thing.