"Your brain has turned to mashed potato and your body is battling through Golden Syrup."
That's what the physical and neurological symptoms of myalgic encephalomyelitis (M.E.) feel like, according to Niamh on Twitter, while Lucy calls it "an unpredictable roller coaster ride without the fun."
But what about the stigma and disbelief also faced by those with this hidden neurological illness? Isolation and exclusion are daily realities for the 250,000 people in the UK living with M.E., including 25,000 children and young people.
It's the biggest cause of long-term school absence and yet many teachers and other professionals know little about M.E. and its impact. Despite living with this hideous illness, children are repeatedly having to explain what M.E. is and how it affects them. My son Danny has given up. He finds it too hard and hates being seen as 'different' because he is not in school full-time, often attending for part of a day. You can imagine how broken-hearted I was to hear my little boy, aged just 11, say to me, "I don't feel my life is worth living. I don't have a place in the world anymore."
Before I joined Action for M.E., I had been a child protection social worker. I've seen and heard some terrible things but I am repeatedly horrified at the experiences that I hear of the ignorance, injustice and neglect faced by people with M.E.
Last week, we published the findings of our survey, undertaken with 270 parents of children with M.E. Not only did we find that one in five families had been subject to child protection referrals, a disproportionately high number, but that 90% of parents felt that their child had not been believed when talking to professionals about how M.E. affects them. In fact, almost all - 96% - said they felt that a lack of understanding about M.E. affected the support they received.
Half of these referrals were made by teachers, and a third by doctors. In a significant number of cases, these professionals wrongly assumed that the child's parent was suffering from fabricated or induced illness syndrome, or FII (previously known as Munchausen by proxy).
Given that 70% of all cases were dropped within a year, the only conclusion I can draw is that there is a significant lack of understanding about M.E. I am not blaming teachers and doctors; they do an amazing job, most of the time in very difficult circumstances. But this cannot continue.
We no longer live in an age where children should be seen and not heard. Now is the time to give M.E. its place in our society; to reassure families affected by this condition that they still matter, that they are still important.
We all have a responsibility to make this happen so that children like my son Danny are able to feel they have a part in our world.
M.E. is an illness that can affect anyone at any time. By taking time to learn more about it, and knowing where to go if it ever affects you or someone you know, you can make M.E. visible, and help those it affects to be seen, heard and respected.
For information and advice about living with M.E., visit www.actionforme.org.uk
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