Two sisters tell their M.E. stories | Bristol Post | 11 September 2012

From the Bristol Post, 11 September 2012

THEY say lightning never strikes in the same place twice, but for the Jenkins family from Downend, the controversial chronic fatigue syndrome ME has struck as a devastating bolt from the blue for two young siblings.

After being first diagnosed with ME (myalgic encephalopathy) at the age of eight, elder sister Sophie has spent the last eight years in an horrendous downward spiral.

With even the lightest activity leaving the 16-year-old thoroughly drained of energy, she has been forced to retreat from a normal teenage existence.

She has been unable to attend school for the last 18 lonely months, and while home studying has kept her GCSE grades respectable, her social life has crumbled – she has been largely forgotten by her peer group.

But now the family has been hit again by the mysterious condition, with younger sister Phoebe diagnosed with the illness, it seems the ten-year-old is heading towards the same grim experience.

With mum Louise herself suffering chronic pain from fibromyalgia, a not dissimilar condition, as well as the autoimmune disease lupus, she understandably worries whether there may be genetic links between the three conditions.

“We don’t know if there is a family link, or whether perhaps there is a shared environmental or viral cause,” Louise says. “But of course, as parents we worry terribly about what the girls are going through.”

Louise, and husband Cliff, first began to notice that Sophie was ailing when she was just seven years old.

“She was constantly tired,” she recalls. “And she was always ill – she would contract virus after virus, and we began to worry there may be something wrong with her immune system.

“Doctors carried out various blood tests to rule out all other possibilities, and were left having to assume that Sophie’s condition was ME – a condition they are unable to test for medically.”

Sophie says: “Many people don’t believe that ME is a real illness. They think it’s all in our minds and that we are lazy.

“We look fine on the outside, but what they cannot see is all the excruciating pain we are in, the extreme fatigue we are feeling and the weakness we have which sometimes means it can be impossible to do something as simple as hold our mobile phones or cut up our food.

“As an eight-year-old, going to Southmead Hospital, after months of being turned away by doctors with courses of antibiotics, I was very nervous. I’d always hated needles; I always got so scared of them. I had to have four large tubes of blood taken and a throat swab to be sent away and tested.

“After a couple of weeks the blood tests came back clear of everything they had tested for and we were sent back for a follow up appointment. At this appointment they told me that I had ME or chronic fatigue syndrome. I had never heard of this illness before so we were completely in the dark about it. I was so scared.”

As the condition worsened, Sophie was able to attend fewer school days, and for the last 18 month of her time at Downend Secondary School, she didn’t set foot inside a classroom.

“It was impossible,” she says. “I wake up at 9am, drag myself out of bed, but by the time I have had a shower I am always so exhausted I have to go straight back to bed.

“I lay there, drifting in and out of sleep, watching a bit of television, until the evening. I get up to have a meal and spend some time watching television with my family, before going back to bed for the night.

“It’s a very boring existence for a teenager, and I do get very down – very depressed. Because I hardly ever go out, I don’t have many friends at all. I keep in touch with a few people online, but otherwise I feel I live a very isolated existence.

“When I do go out, I have to use a wheelchair as my legs aren’t strong enough to walk very far and walking also causes me a lot of muscle pain.”

Louise watches her daughter on the sofa – her brow knotted with concern.

“A simple trip to the cinema is enough to cause Sophie to have to retreat to her bed for a week,” Louise adds.

Sophie says: “Most people take things such as washing their hair, having a bath, going up and down the stairs and reading totally for granted. Any one of these normal activities totally drains me.

“There is no cure for this dreadful condition; no medical treatment – people can get better, or grow out of it, but only time will tell how long it takes.”

Sophie has had to defer her place to study for A-levels at Downend Sixth-Form College, which leaves her seriously concerned about whether she will ever achieve her ambition of becoming a midwife.

“I would love to be a midwife,” she says. “But that will mean successfully getting through college and university, not to mention the gruelling training involved. Midwifery is not something you could hope to do with chronic fatigue – it is such a tiring job at the best of times. So I’m desperately hoping I somehow grow out of the condition.”

But in the last year the family has seen history repeating itself, with Sophie’s ten-year-old sister Phoebe also being struck down with ME.

“I just feel constantly tired,” says Phoebe, who is spending increasingly long amounts of time away from her class at Stonebridge Primary.

“The teachers have been very understanding, but my friends …” Phoebe’s face flutters with emotion for a moment as she finds the words, “… my friends don’t really understand.”

Sophie gives her younger sister a reassuring squeeze of the hand.

“We’re very close as sisters,” Sophie says. “I know exactly what Phoebe is going through.”

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