Imagine that you are a loving, caring parent of a well-behaved, hard-working child. You are worried though because school seems to be a real struggle for them, especially where reading and writing are concerned. You notice that they tend to mix up letters when they are tired and struggle to follow lines in a text. How would you feel? Angry, frustrated, worried, alone?
You probably have a feeling that the problem might be dyslexia but you’re no expert so you can’t be sure. You do what any sensible parent would do and make an appointment to see their class teacher.
Imagine then that the teacher, worst case scenario, tells you there is nothing wrong with your child, it’s all in their mind! How would you feel? Angry, frustrated, worried, alone ? Would you think maybe it is all in your mind or maybe it is your child’s fault? Why not, somebody more expert than you has made that suggestion!
What about best case scenario they say that they think your child is dyslexic and that the child will just have to deal with it but don’t give you anything practical to do? How would you feel? Frustrated, alone, confused, worried, angry?
So what would any good parent do when they hear that their child has got dyslexia? They would google it! Now imagine on googling it you read a description of what dyslexia is and it perfectly matches your child. You then read up on how to ‘deal with it’ as the teacher suggested; every website has a different suggestion and often these suggestions are met with derision or anger on another website. You spend hours researching and ultimately end up with no clue as to what you should do although you are determined to do something! How do you feel? Scared, angry, frustrated, confused, alone?
So you return to the teacher and say I can’t do this alone, I respect you are more of an expert than me but I need someone with more expertise than you. They are lovely about it and say they will see if they can find someone. Two weeks later you follow it up and they say they have spoken to everyone in the school and nobody knows an expert. How do you feel? Scared, angry, frustrated, confused, alone?
So, imagine you return to lovely google, it takes seconds to find that there is a state specialist in the next county, although there is nobody in your county. You think, I’ll be efficient and give them a ring so I know they are the right people to pass on to the teacher. They say they are but as you are in a different county they don’t have to take you on. How would you feel? Angry, frustrated, worried, alone?
You get the teacher to make the referral anyhow and wait in trepidation to find out if you will get an appointment. In the meantime you meet lots of people whose children have dyslexia and read treatment surveys that show the official state recognised treatments are recognised to make the problem worse and are not recommended by the real experts. They are treatments based on an old understanding of the problem that has since been disproved!
You further learn that there are treatments that help far more people (though no guarantee of a cure) but they are not available from the state. So now you know your much fought for specialist appointment, when eventually it comes, may actually make your child worse! How would you feel? Angry, frustrated, worried, alone?
You quickly realise the only way to help them is to try as many different treatments as possible, some costing a few pounds some thousands but none of them covered by the state. You are very aware though that these may help your child but reading treatment surveys, you are also aware that they could make them worse. How would you feel? Angry, frustrated, worried, alone?
If parents of dyslexic children were really treated this way, do you think it would be accepted? Do you think it would be fair? Do you think you could cope?
Replace the word teacher with GP and dyslexia for M.E. and that is the reality for all sufferers. Some of us, like myself, are lucky to have supportive GPs (even if they don’t know a lot) but far too many patients are accused of being depressed or anxious and that it is all in their mind. It is not unknown for people to be forcibly sent to psychiatric hospitals or children to be removed from their families because the symptoms are seen as a cry for help from an abused child, there are bed-bound patients who haven’t left the house in 5 years who haven’t seen a GP or a consultant in this time because they can’t leave their house and doctors won’t visit them.
How would you feel if that was you, your partner or your child? Angry, frustrated, worried, alone?
So what is needed? More invested in research both of the cause and a cure. An investment of £1 per patient per year in the UK is not enough to help 250,000 people whose lives are permanently on hold. People who could be income generators for this country, people who could add to the intellectual wealth of this country are being prevented from doing so because M.E. is not only a misunderstood disease but one that is unattractive for investment and for researchers.
I cannot solve this alone, my family cannot solve this for me – for the moment however I have no choice but to try.