A Lancashire woman who battled with the debilitating illness for most of her life and was not expected to live beyond her 20s enjoyed a miraculous turnaround after undergoing revolutionary treatment.
Jade Benson tells AASMA DAY her amazing story and why she is now raising awareness of the Perrin Technique which has just been highlighted in a study for its effectiveness in diagnosing the condition
Some people describe their childhood years as among the best of their life but Jade Benson says the severe and debilitating fatigue and pain condition ME robbed her of the majority of her childhood and teenage years.
Jade’s quality of life deteriorated so severely, her body was shutting down and she wasn’t expected to live beyond her 20s.
Jade, 25, who lives in Pilling, Lancashire, confesses things got so bad, she was ready to give up as she had no quality of life.
Jade explains: “I had glandular fever when I was six and never really fully recovered.
“When I got to high school, things became a lot worse and I was off sick and then subsequently diagnosed with ME.”
ME, also known as Chronic Fatigue Syndrome (CFS) is a long-term illness with a wide range of symptoms and the most common symptom is extreme tiredness.
Jade was under a paediatrician at Royal Lancaster Infirmary and her condition gradually got worse so she was schooled by the Lancashire Medical Education Service.
My condition got so bad that I became wheelchair bound and my organs were starting to fail. I wasn’t expected to live beyond my 20s. I was getting every infection going and my body was rejecting most foods.
“I was experiencing heart problems and palpitations, kidney problems and had trouble breathing.
“By the time I was 18, I could not walk or stand and I was moved to adult services.
“I deteriorated very quickly and could not do anything for myself.
“My body was shutting down and nothing was helping. I could not really keep any food down.
“Painkillers made no difference and to be completely honest, I was ready to give up.
“I had had enough of living like this.”
Jade and her parents spent years trying everything the NHS had to offer to treat her ME but nothing helped.
They even tried everything they could find outside the NHS, but none of these worked either.
As well as battling the severe effects of the condition, Jade says things were made worse by the cynicism and disbelief she faced from some people who felt the condition couldn’t possibly be as bad as she described.
She says: “With ME, there are still some people with the attitude that you are making it out to be worse than it is.
“They think because they can’t see it, it doesn’t exist.
““I was very lucky as my parents were very supportive, but there were some people who did not believe it. There are even some medical staff who do not really understand the condition because of a lack of training.
“When you know how terrible you feel, it is very difficult to deal with sceptical and disbelieving reactions - especially when they come from people working in the medical profession.
“There are some doctors who are brilliant and very supportive with ME.
“But there are others who are awful and don’t understand it and view it as ‘not a real illness.’”
Despite her condition and being schooled ay hospital and at home, Jade achieved good results in her GCSES and ended up doing her exams in a wheelchair.
Jade was finally given a glimmer of real hope at the age of 18 when someone who lived in her village who also had ME, although not at severe as Jade’s, heard about a treatment called the Perrin Technique.
Jade says: “There are loads of people out there claiming to help with ME but this sounded really promising and credible so we booked an immediate appointment to see Dr Raymond Perrin at Manchester.”
The appointment was a monumental moment in Jade’s life. The Perrin Technique is a system of manual diagnosis around five physical symptoms and is based on the theory that ME/CFS is a disorder of the lymphatic drainage system.
The 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.
Dr Perrin positively diagnosed Jade with ME. He believes her condition may have been caused by a combination of the spinal problems which developed when Jade was a baby and from the episode of glandular fever she had when she was six.
Jade started the treatment the following week. Treatment using the Perrin Technique focuses on stimulating the fluid motion around the brain and spinal cord to aid drainage of toxins and this has been found to significantly help sufferers.
Jade says: “The treatment is cranial osteopathy - putting pressure on different parts of the skull to help the fluid move.
“The treatment was extremely painful given how intensive it was but I saw promising results.
“Originally, I was seeing Dr Perrin every six weeks and another osteopath every week. My mum was also doing the treatment on me at home every day and I had to do certain exercises several times a day. I did it religiously and gave it my all and it became my whole life.”
Jade says at first the treatment made her feel worse and she went downhill rapidly but Dr Perrin told her that was normal and to just carry on.
A few months into the treatment, Jade experienced a rare reaction when her nervous system went into shock - but it was the turning point in changing her life.
Jade explains: “After a particularly difficult appointment with lots of intense manipulation, my nervous system went into shock and I had 24 hours of not being able to move.
“I could speak and open my eyes but apart from that, I had no movement whatsoever.
“Dr Perrin said it was a rare reaction but a good reaction and my body was just dealing with all the fluid that had moved out of the brain.
“It was terrifying but after the initial 24 hours, everything just accelerated and I got better everyday.
“Having been unable to walk for two years, a fortnight later I was walking on crutches and soon began to walk independently.
“Within the year I started at college and passed my driving test and I was working.”
Jade, who works at the family business, a garage called Roadrunners in Cabus, near Garstang, says after years of feeling so ill and being unable to do anything, it felt strange to suddenly feel so much better.
Jade says: “It felt bizarre to actually be able to leave the house independently.
“I had not been able to be on my own for years.”
Jade met her husband Andrew in May 2011 at the local pub when she was collecting her mum and dad from a 40th birthday party.
They married in May 2015 and Dr Perrin attended the wedding and Andrew thanked him for saving Jade’s life with the words: “without Dr Perrin, my wife wouldn’t be here today” and Jade describes Dr Perrin as “part of the family now.”
Jade and Andrew are now proud parents to two-year-old Jack - although Jade once feared she would never become a mum.
Jade says: “I had been told for years by doctors that I would probably never be able to have children, as my body had been through so much.
“ But I became pregnant with Jack naturally and we are thrilled with him.”
A year after getting out of her wheelchair, Jade climbed Scafell Pike and is an active fund-raiser for the charity F.O.R.M.E which helps us raise funds for research into the use of osteopathic techniques in the treatment of ME.
Jade says: “People come to the garage in Garstang and they want to talk to me not about tyres but about ME and how I got better.
“I want to tell as many people as I can and help them.
“I want to spread the word about the Perrin Technique so other people can learn about this amazing treatment.
“Seeing Dr Perrin was like turning a light on.
“He turned my life around and is a hero in my eyes and now part of my family.”
A new study published in the BMJ Open reveals that the Perrin Technique is quicker and more accurate at aiding the diagnosis of ME/CFS than current methods.
The research was funded by the F.O.R.M.E charity and led by the University of Central Lancashire in association with Wrightington, Wigan and Leigh NHS Foundation Trust and Salford Royal NHS Foundation Trust.
The findings could transform the way in which patients are assessed for the condition and diagnosed.
There is currently no universally accepted method of diagnosing ME with diagnosis being completed via process of elimination of other conditions.
In the first study of its kind involving 94 participants, Allied Health Professionals using the Perrin Technique successfully diagnosed 86 per cent of individuals with ME.
Participants were assessed for five physical symptoms with no prior discussion about their condition or experiences.
When assessed by an experienced doctor using the standard clinical neurological and rheumatological examination, only 44 per cent of sufferers were correctly diagnosed with the condition.
Dr Raymond Perrin says: “Obtaining a diagnosis for CFS/ME is often a lengthy and stressful process for sufferers.
“This research shows that a simple examination could offer an aid to diagnosing ME for all doctors and primary health care working dealing with it.
“This could speed up the diagnostic procedure and help with the overall care of hundreds of thousands of sufferers in the UK alone. The quicker the diagnosis, the better the outcome for patients.”
Bev McDonald, trustee at charity F.O.R.M.E says: “These findings are really promising.
“CFS/ME sufferers often have to endure months of unexplained symptoms before being given a diagnosis and this technique has the potential to speed up the process and facilitate quicker diagnosis and treatment.
“We hope the research helps to raise awareness among both patients and medical professionals.”
Prof Jim Richards, lead for the Allied Health Research unit at the University of Central Lancashire, says: “It appears that using physical symptoms to diagnose CFS/ME has the potential to speed up the diagnostic process and improve the accuracy of identifying the condition.
“Although we would recommend carrying out further research among the larger population for validation, this certainly shows exciting potential for sufferers of CFS/ME and the way the condition may be identified.”
l Myalgic Encephalopathy (ME) is also known as Chronic Fatigue Syndrome (CFS).
l CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalopathy) is a condition defined by the presence of many symptoms which can include: chronic fatigue, unrefreshing sleep, muscle pain, cognitive dysfunction (brain fog), sensitivity to sound and light, depression, anxiety, irritability and mood swings.
l Other symptoms may include digestion problems, chills and night sweats, dizziness and fainting.
l These symptoms are not exhaustive and can vary between individuals, as can their severity.
l Debilitating fatigue and brain fog, in which the person has cognition problems such as poor concentration and memory, are common among most people with CFS/ME.