ME case study: 'She told me that she did not want to carry on'

The mother of an ME sufferer tells Cahal Milmo how the condition debilitated her daughter

At the age of 11, Kate Charles was a promising schoolgirl. Her aptitude for English was such that her teachers said she was ready to sit her GCSE five years early. Then, after a routine tonsil removal, a downward spiral of debilitating symptoms slowly turned this bright energetic child into a bedbound and despairing sufferer of chronic ME.

After years of misdiagnosis, during which Kate's illness was variously described by doctors as "growing pains" and "school phobia", the teenager was not correctly identified as suffering from myalgic encephalomyelitis, or ME, until she was 16. By that point, her condition was so severe that her mother, Elaine, an NHS midwife, had to give up her job to care for her.

Patients' groups yesterday underlined that the extreme ME symptoms suffered by Lynn Gilderdale, whose mother Kay was this week cleared of her daughter's attempted murder, and Kate, who is now 18 and has been seriously ill for at least four years, are far from unusual in a poorly understood disease which is still too readily dismissed by many as "yuppie flu".

Elaine, 54, knew that something was seriously awry with her daughter when she collapsed at their home in Featherstone, near Pontefract, West Yorkshire, on the day of her SAT tests when she was 14.

In reality, it was the start of a long journey towards the diagnosis of an illness which, at its lowest points, has left Kate feeling that she too could not go on. Elaine said: "Kate had her tonsils out when she was 11 after nine months of constant illness. Everyone said that she would be much better as a result. The opposite turned out to be the case. She has never been well since. When her friends wanted to go out to play, she wanted to stay at home. When she came home from school, she would go straight to bed.

"The doctors said it was all sorts of things. There were post-viral syndromes, growing pains. One said it was because I was an over-protective mother. Then on the day she was due to start her SATs, Kate just collapsed at the back door. She could not go on. It was horrendous. Her school was five minutes' walk away, but suddenly we had to drive everywhere.

"We struggled on for two more years. There were more diagnoses – school phobia, agoraphobia. But nothing seemed correct until one day someone mentioned ME. It was like an epiphany. At last we had an explanation for such extreme symptoms. When Kate should have been celebrating her "Sweet 16" birthday, she was in bed, unable at times to even move or swallow."

Mother and daughter liken the condition to a constant feeling of being caught in the immediate aftermath of a severe bout of flu. Alongside headaches, sinus pain, and general aches and pains comes a terrible, all-consuming exhaustion. On top of this there can be complications such as an aversion to light, smell and sound which mean that Kate has to wear sunglasses to enter a bright room and is easily overwhelmed by sensations when outside the home.

Kate, who has seen a small but significant improvement in her symptoms in recent months, told The Independent that ME sufferers face a double battle to overcome their condition and widespread disbelief in its severity. She said: "With ME, everything is a battle, ongoing and seemingly never ending. Suffering through ME daily is awful. But when people think you fake it for days off school and work, it feels pointless to even try to manage it.

"Doctors appear uncomfortable with the entire subject and are often dismissive and judgmental. It's completely isolating. Some days it's quicker to say where it doesn't hurt. I stay in bed all day, every day because if I don't the illness is unbearable. For me, it's not an illness, it's a lifestyle."

The Young ME Sufferers (Tymes) Trust, to which Elaine and Kate turned when her diagnosis was made, estimates there are between 25,000 and 30,000 children and young people with the condition in Britain. Research suggests up to half of children with a record of long-term absence from school are suffering to a greater or lesser extent from the illness.

For the Charles family, the nadir of Kate's suffering came at Christmas 2008, when she was unable to move without a wheelchair and all the plans she had shared with her mother of attending college and then university seemed a far-fetched impossibility. At one point, with a clear echo of the despair that drove Lynn Gilderdale to take her own life, and her mother to assist in her suicide, Kate felt she could not withstand the suffering any more.

Elaine said: "Kate told me that she didn't want to go on any more. As far as she was concerned, she didn't think there was anything to live for and she just could not go on."

They came this darkest moment, she added, because of the hope that, one day, there may be a cure for ME – a disease which they and other experts are at pains to differentiate from Chronic Fatigue Syndrome, a catch-all name for a range of symptoms that do not necessarily match those of ME.

Jane Colby, executive director of the Tymes Trust and a former headteacher who spent four years with severe ME, said: "Chronic fatigue syndrome is a medical nonsense. ME needs to be treated as a separate and specific condition. Unfortunately, we are in a situation where professionals in medicine, education and social services still do not know how to recognise it and where its terrible severity goes unrecognised."

My fight against ME, Kate Charles, 19

With ME everything is a battle, ongoing and seemingly never ending. Nothing is ever easy; you fight for people - even family sometimes - to believe you in an effort to validate your plight. Suffering through ME daily is awful but when people think you fake it for days off school and work it feels pointless to even try to manage it.

Doctors appear uncomfortable with the entire subject, and are often dismissive and judgemental. It’s completely isolating. No one understands. They sometimes think you’re lying or attention seeking, lazy, or a hypochondriac. They misjudge you but rarely change their opinion.

You are penalised by the lack of knowledge and “evidence based” research. Doctors appear to think you enjoy staying in bed, you don’t; and you put yourself through more hardship, in an effort to recover.

You get to a point where you would do anything, give up anything to be well again. Even though it was so long ago you barely remember what it feels like.

I put the ‘giving up anything’ into action, when I completely cut out gluten and dairy from my diet, (harder than it seems, when there are more things than you think contain them). But it’s worth it if it improves my health even a little,which it does.

Still when it comes to the doctors, instead of giving you credit where credit’s due, for putting far more effort in to help yourself, than they do to help you, they make it worse by insisting you’re not “allowed” lactose free medication because there is no evidence about the diet’s effectiveness.

It’s hard for family and friends to fully comprehend what you go through and eventually the illness goes on so long, even family members get tired of hearing how utterly ill and bone weary you feel and stop asking. That would be fine but just because they don’t know about it, doesn’t mean you don’t go through it.

You seem to lose everything and everyone, friends and family. The only people who are still there when the smoke clears are the ones that truly care. A life lesson I feel I am too young to have had to learn.

The symptoms are erratic and random. They say you have good days and bad days. You don’t with ME - you have bad days and worse days mostly.

You get tired of always feeling ill and not being able to do anything, even move occasionally, you feel trapped inside your own skin, sometimes literally. You find things you used to think trivial are the things you miss the most, like going outside even going downstairs.

Some days it’s quicker to say where it doesn’t hurt. I stay in bed all day every day because if I don’t the illness is unbearable, but even still the best possible outcome is when I only have one symptom, like say a headache for instance. It seems incomprehensible to me that people don’t have headaches, back aches, sore throats etc on a daily basis. For me it’s not an illness, it’s a lifestyle.