Children with ME may look normal, but you would not like to run their race for life!

I was asked a very good question from a friend’s daughter a while back. She had asked her mum what is and how does ME (Myalgic Encephalomyelitis) effects Angus. I found this hard to respond to for a whole range of reasons but most importantly because the medical profession and researchers haven’t had enough opportunity or funding to research, so therefor cannot give a definitive answer to the question.

ME is a complex, acquired multi-system disease, with profound dysfunction and dysregulation of the neurological control system; notably the immune and endocrine systems, dysfunction of cellular energy metabolism and iron transport, with cardiac impairments; well how do you explain that to a eleven year old? Well it’s a bit tricky but I’ll give it my best shot.

OK imagine it is sports day, and this year they have decided to make things a little more equal for the children with ME. So they have given the children without ME, weights on their arms and legs; you know the type that strap on with Velcro. This is how my son’s legs feel all the time - held down by weights that sleep does not refresh. There is a peg for their noses, as ME Sufferers have a problem with the flow of oxygen, and a tight elastic band on their head, headaches are a major problem for Angus and many ME sufferers.

So - imagine walking to the start line with all those constraints. It will take a little longer than normal and you will already be feeling the heaviness in your legs and breathing will be a little more difficult, but you  line up at the beginning of the obstacle race. There are sacks, egg and spoons laid out at intervals, you have will have to put stones in your backpack at these intervals; to simulate the lactic acid burn that ME gives you. At the end of the race you are given a sticker and told to sit down until the next race.

Remember you still have a peg on your nose and the stones in the back pack with weights on your arms and legs and a tight band around your head, sitting still is starting to hurt. You're not allowed water; ME children get more dehydrated, so it does not matter how much water they drink they still get dehydrated. You are then asked to line up to run the next race, after which you have to do a maths test. Because of the lack of oxygen and dehydration you are finding it hard to concentrate and your head is hurting. Now imagine how you would feel to do this every day, never feel as if the stones and weights are lifted and even after days or weeks that muscle tiredness or spasms that comes with over exerting don't stop aching.

It seems unbelievable and unkind to make children do this! But this is how a child with ME feels every day they go to school. Playtime is both physically that challenging, but because you cannot see the weights on their arms and legs they are never taken into account. We cannot comprehend how it must be. This though is the comparison of how ME affects the body, in just one part of the multitude body parts that are affected by this illness.

Unfortunately the medical profession are not taught about Post Exertional Malaise (PEM) or as me and Angus like to call it Post Activity Increase in New or Severity of Symptoms (PAINSS). PEM is the dividing characteristic or diagnostic criteria for ME.

The child with ME does not have a peg on their nose, no weights on their ankles or arms and no heavy backpack on their back for people to see, ME is invisible and children look no different from healthy children.

The only publicised research is about activity. I find this astonishing when you look at the research into the damage done to their brains and know that a buildup of lactic acid is 20 x that of a normal person, and yet the NHS fund exercise research on the young children that struggle? This however is for another or many other blog posts, which you can find on my page.

Please remember ME children hidden in rooms with an invisible peg on their nose, weights on their legs, tight elastic bands around their heads and heavy backpacks that never come off. They are true heroes that learn to live a restricted life, against the humiliation forced on them by a few.

We need biomedical research and we need it now!!! For all the 25,000 children who are #MEheros

Children with ME may look normal, but you would not like to run their race for life!