A woman forced to give up school in her battle with chronic fatigue syndrome says she finally has her life back.
An estimated 250,000 people are battling with chronic fatigue syndrome – also known as myalgic encephalomyelitis – in the UK.
The condition is characterised by severe, disabling fatigue and a combination of other symptoms including muscular pain, concentration problems and intolerance to exercise.
Jen Turner (24) is an example of how diagnosis of ME can often be delayed.
She was forced to battle for several years with the exhausting and incapacitating symptoms before she was officially diagnosed.
Then she had to drop out of school in Year 8 and was left bedbound due to her ME.
She was unable to speak, eat and had to lie in a dark room in silence, being fed through a feeding tube.
Following her diagnosis and subsequent treatment, Jen is now able to manage her symptoms more effectively, and get on with her life without the relentless pain and exhaustion.
Jen first became ill in November 2005. Her family initially thought it could be flu, but her state of health continued to deteriorate and in Year 8 she was forced to drop out of school and instead seek private classes for one hour a day during the week.
She said: “I started to attend a local school for children with medical needs. I tried to go back to school when I was 14 for Year 10, for five mornings per week.
This again became too much to bear, and then eventually by Christmas time we decided this just wasn’t going to work.
“I went back to the educational medical centre, which I managed until March 2008, but then my health went downhill very quickly.”
At this point Jen was so ill that she couldn’t even walk down the stairs. Like many ME sufferers, not only did the condition affect her physically, it also affected her mentally.
She said: “I couldn’t eat as it made me feel sick, and made it feel as if I was choking every time I tried. I was in a lot of pain, and I remember one day being particularly bad. I felt like I couldn’t breathe. My parents called an ambulance and I ended up staying in hospital for four months.”
After Jen was admitted to hospital she became increasingly unable to eat and drink enough to sustain herself.
She underwent numerous tests which came back mostly normal, with the tests themselves making her even more ill. Jen’s condition continued to deteriorate, and she was losing weight rapidly.
Her lowest weight was 36kg – about 5st 9lb – and at this point she needed a feeding tube as she couldn’t eat and hadn’t eaten for so long.
When hospital staff finally gave her food, Jen’s body went into total shock, resulting in her having to take further medication for her liver.
At one point, her paediatric consultant described her as the “sickest patient on his list”.
However, with no one able to diagnose her condition or offer treatment, eventually she had to self-discharge from hospital as there was nothing else staff could do.
“I went home in an ambulance and was completely bedbound,” she said. “I got more and more ill and at one point could only communicate by squeezing someone’s hand.
“I remained in a dark room being fed through a tube in silence until 2009. Then somehow, I gradually started to get a little bit better. I slowly became able to eat, be propped up in bed, and could talk again.
“However, I was still completely bedbound and on a whole host of painkillers and medications.”
Jen was then told about the work of osteopath and neuroscientist Dr Raymond Perrin, and how he had helped others in a similar position.
She met Dr Perrin in September 2010, who confirmed her ME and started treatment.
“It got worse before it got better,” she said. “After the first treatment I got ill again, and then after a few treatments I started to have spasms and experienced previous illnesses I’d had in my life, but in reverse.
For example, I had shingles when I was little and got the same rash and pain, but only for a day.
I also had ear problems when I was younger and these too came back for a short while – it was really strange to experience.”
Dr Perrin said: “The technique is a system of manual diagnosis around five physical signs, and is based on the theory that CFS/ME is a disorder of the lymphatic drainage of the central nervous system.
“This disorder can be caused by different factors including allergies, stress and infections, which can lead to a build-up of toxins in the fluid around the brain and spinal cord.
The five physical signs I look out for include postural defects, tender points around the spine, chest and lymph nodes, skin rashes or eruptions and abnormal breast tenderness, as well as lymphatic varicosities that cannot usually be seen, but are felt just beneath the surface of the skin.
Once diagnosed, treatment is then centred around using ‘the Perrin Technique’ to stimulate the fluid motion around the brain and spinal cord, to aid drainage of these toxins, and this has been found to improve and relieve symptoms in patients with ME/CFS.”
By Christmas, Jen started to get better quite quickly while having weekly treatment sessions at home.
Jen said: “On my 18th birthday I took my first steps again after being unable to walk for so long.
This was an incredible experience and so emotional for myself and all of my family.”
It’s been steady progress for Jen ever since. She taught herself for her GCSEs and then she completed her A-levels and got into Cambridge University where she is currently studying German and Spanish.
Jen is also currently living in Spain doing her year abroad, something she never thought would be possible.
“Nowadays I am relatively symptom free,” she said.
“Nobody would know that I’ve been ill, and I no longer require a wheelchair. I do of course have to be careful not to do too much, but as long as I’m sensible I don’t have any problems.
“In the past couple of years, I’ve visited China to teach English and then this summer I went to Tanzania – volunteering to help people set up their own businesses.
“In the future I’m thinking about a career in law, potentially to do with human rights on an international level. But to be honest I’m just living in the moment.”
l For more about the Perrin Technique, visit: http://www.forme-cfs.org.uk/ – FORME was set up in 1995 to raise funds for research into the use of osteopathic techniques in the treatment of ME/CFS.