In a bid to highlight what it’s like to live with a debilitating condition, Lancaster woman Jen Turner talks to GAYLE ROUNCIVELL about having chronic fatigue syndrome, and how it’s changed her life.
It is estimated there are 250,000 people battling with chronic fatigue syndrome (CFS) – also known as ME (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.
There is currently no universally accepted method of diagnosing CFS/ME, with diagnosis being completed via process of elimination of other conditions and often requiring sufferers to have first endured unexplained symptoms for at least four to six months.
Lancaster woman Jen Turner, 24, is one such example of how diagnosis can often be delayed.
She was forced to battle for several years with the exhausting and incapacitating symptoms before she was officially diagnosed.
Following her diagnoses 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.
“I didn’t walk for nearly six years and went down to 36kg as a result of my condition,” she said.
“I took my first steps again on my 18th birthday after having the Perrin Technique treatment and am now studying at Cambridge University.”
Former Lancaster Girls’ Grammar School pupil Jen 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.
That was until she heard of The Perrin Technique, which she decided to try as a last resort to get a diagnosis and seek treatment.
She took her first steps again on her 18th birthday, and 12 years after her first experience of ME, Jen is now fit, healthy and symptom free.
She lives her life to the absolute fullest by travelling the world, and she is currently completing her degree in German and Spanish at Cambridge University.
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. This was where I met one of my best friends Jade, who had similar symptoms to me. I tried to go back to grammar 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 of 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.
She describes how 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.
“My friend Jade, who I initially met at the educational medical centre, had just started to have treatment with Dr Perri,n which she was finding successful for relieving her symptoms which has been diagnosed as being from her ME,” Jen said.
“Jade then held an event where Dr Perrin was present, talking about ME and his technique. My mum Janine attended the event, and as soon as she heard about what he did, she cried for the whole afternoon.”
Following this, Jen met Dr Perrin in September 2010. Dr Perrin came to the house, confirmed the diagnosis of ME and started the 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: “I developed the the ‘Perrin Technique’ to help diagnose patients with ME/CFS more efficiently to facilitate quicker treatment.
“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.
Dr Perrin recommended an “amazing physiotherapist to complement the treatment” and after a while she was able to stand up again.
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.”
“To celebrate my birthday I went to Centre Parcs and we stayed in a villa that had disabled access.
“I was so happy with all the freedom I had, that one day I went to get out of bed and my wheelchair brake wasn’t on correctly.
“As I went to sit in the chair it shot out and I broke my heel bone! I couldn’t believe it, I’d just learnt to walk again, and I broke my foot!”
It’s been steady progress for Jen ever since. Jen 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. 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.
“I don’t see Dr Perrin very often now at all. Instead, every few months, I see an osteopath who is trained in the Perrin technique in Cambridge as more of a preventative measure.
“There is no doubt that the Perrin Technique transformed my life and I don’t know what I would have done without it.”
* For more information 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.
WHAT IS CFS/MS?
Chronic fatigue syndrome (CFS), also known as ME (myalgic encephalomyelitis) is a complex disorder characterised by profound fatigue, but with an uncertain cause or causes.
There are no specific medical tests to confirm a CFS diagnosis. Doctors may make a diagnosis after ruling out other conditions which do have more definite tests.
The National Institute for Health and Care Excellence (NICE) guidance for doctors says a diagnosis should be made after symptoms have persisted for four months in adults or three months in children and young people.
The ME Association says the condition affects around 250,000 people in the UK.
University of Bristol research in 2011 estimated the number of 11 to 16-year-olds with CFS at one in 100.
CFS affects those of any age, gender or ethnicity. For some sufferers the effects may be minimal but in a large number lives are changed drastically. For young people education can be severely disrupted and for many adults employment becomes impossible. For all, social life and family life become restricted and in some cases severely strained. Sufferers may be housebound or confined to bed for months or years.
CFS is assessed as being mild, moderate, severe or very severe, depending on a person’s symptoms.
Chronic fatigue syndrome has generated significant debate and controversy in the medical community. It remains a poorly understood and potentially debilitating illness. Scientists believe chronic fatigue syndrome is not contagious.
CFS is one of the conditions that NHS Blood and Transplant permanently exclude people from becoming blood donors. The NHS says this is solely to protect the health of the donor.
CAUSES of CFS
Multiple factors including immunological, genetic and environmental ones may be working in combination to cause the development of chronic fatigue syndrome.
Theories include CFS being triggered by viral infections, such as glandular fever.
Possible CFS causes include immune system problems, hormone imbalance, psychiatric conditions, genetic or inherited risk and trauma.
A 2011 study published in the journal Gut suggested a link between being infected with the stomach bug Giardia and an increased risk of having chronic fatigue years later. However, the study couldn’t prove a direct cause and effect.
CFS can be hard for doctors to diagnose, because many of the symptoms could also indicate other health issues, such as thyroid problems, lupus, multiple sclerosis or Lyme disease.
CFS symptoms may fluctuate or be intermittent and include:
Fatigue and malaise following mental or physical activity
Intolerance to exercise, joint pain, muscle pain
Memory, concentration or attention problems
Clumsiness, walking difficulties
Sore throats, enlarged glands
Temperature control problems
Emotional issues or mood swings
TREATMENT for CFS
Although a CFS diagnosis can be hard to make, NHS doctors are told not to wait for this confirmation before advising a patient on managing their symptoms to help minimise the impact on daily life. NICE says they should:
Acknowledge the reality and impact of the condition and the symptoms
Provide information about the range of interventions and management strategies, including benefits, risks and likely side effects
Provide information on the possible causes, nature and course of CFS/ME
Provide information on returning to work or school/university
Take account of the person’s age, particularly for under 12s, the severity of their condition, preferences and experiences, and the outcome of any previous treatment
Offer information about local and national self-help groups and support groups