This week could be a crucial one for up to 250,000 people suffering from ME . Health body NICE is updating NHS guidelines. And specialist Dr Raymond Perrin has put forward a simple way of diagnosing it. TIM GAVELL talks to Preston resident Cathy Vandome – who has also been supported by her MP Ben Wallce
Cathy Vandome was a whirlwind of energy – running a stage school, working as a stand-up comedian and singer as well as performing as the UK’s top Jessie J tribute act.
She ran two businesses, wrote musical shows for the children who came to her classes and says it was normal to go to bed at 2am after being on stage and then get up at 5am to write her next show. Her idea of relaxation was to go to a Zumba class.
But one day in February 2014 that all changed. At the age of 39 she collapsed in debilitating pain which she describes as “so unbearable it was like being hit by a truck, having broken every single bone in my body and then being set on fire. My head was so inflamed it felt as though it had been blown up like a balloon”.
She had tremors, memory loss, chronic aversion to sound, major problems with her inner ears, vertigo. She ended up bed-bound. She had been struck down with ME, or Chronic Fatigue Syndrome (CFS). The pain and chronic lack of energy were bad enough, but worse was the fact that so many people did not believe that ME was a real condition. They thought it was “just in her head”.
Cathy says the diverse range of symptoms that people with ME suffer and the variety of causes have meant it has been hugely difficult to diagnose and treat in the 60 years it has been known.
For two years, Cathy struggled with the condition, even having a scan at hospital caused unbearable pain. She said the repeated hospital visits and tests coupled with not being believed by medical professionals and specialists as being genuinely physically sick and in real pain was a major setback to any recovery.
She tried everything she could outside the NHS, but at one point ended up in hospital on morphine. She says: “With such unbearable pain, breathing problems, heart pain and cognitive malfunction the symptoms felt like I was actually dying. It was inhumane torture.”
In 2016 came another blow: “The hospital diagnosed me with permanent damage to my inner ears, which meant my stage career was over.”
Then, two months later, a plumber discovered a broken flue pipe from a gas boiler in the kitchen which had been emitting carbon monoxide, probably since it was fitted 10 years earlier and which had been slowly poisoning her. The boiler was replaced and later that year Cathy had another breakthough, she met the person who has given her real hope of recovery.
She heard about neuro-osteopath Dr Raymond Perrin, a Phd in CFS/ME, who had been pioneering his diagnosis and treatment for ME and decided to make an appointment with him.
In December, the Lancashire Post published Jade Benson’s story of her battle with ME and why she was now raising awareness of the Perrin Technique for diagnosing the condition. Jade, from Pilling had the condition since having contracted glandular fever at the age of six and suffered a range of debilitating symptoms until getting treatment from Dr Perrin at the age of 18.
Cathy, too, is battling to get the technique adopted by doctors across the NHS.
Dr Perrin diagnosed Cathy with severe long-term ME and fibromyalgia, saying the level of inflammation in her skull was one of the worst he had ever seen. He told her the condition was brought on by a complex combination of multiple chemical toxins, including the carbon monoxide, along with virus attacks and high levels of emotional and physical stress.
His technique involves the massage of soft tissues in the head, neck, back and chest to unblock the lymphatic system to get it flowing, so it can do its normal job of removing toxins.
Cathy says: “This was life saving for me. ”
Cathy says as a child she had multiple infections and viruses and had been born breach birth. This, Dr Perrin said, led to abnormalities in the spine and cranium, something he said was common in all his diagnosed cases, and which makes people like Cathy more liable to be affected by ME.
Cathy says: “It is not a psychological illness, it has physical causes and no two cases are the same.”
Cathy says the five telltale signs of the condition that Dr Perrin has outlined for the NHS would make it easy for GPs to diagnose the condition and help save the health service hundreds of thousands of pounds a year.
Her bid to support Dr Perrin has also been backed by her MP, Ben Wallace.
Mr Wallace says: “It seems that Dr Perrin has advanced the evidential base in this field which potentially offers hope to hundreds of sufferers. His latest research could lead to the condition being diagnosed more quickly and patients receiving faster treatment. I have recently called upon the National Institute for Health and Care Excellence to consider approving Dr Perrin’s ‘diagnosis’ technique by the NHS.”
A new study reveals the Perrin Technique is 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 UCLan in association with Wrightington, Wigan and Leigh NHS Foundation Trust and Salford Royal NHS Foundation Trust. In the first study of its kind, professionals using the Perrin Technique successfully diagnosed 86 per cent of people with ME.
Dr Perrin says: “This research shows a simple examination could offer an aid to diagnosing ME. This could speed up the care of hundreds of thousands of sufferers in the UK alone.
“The quicker the diagnosis, the better the outcome for patients.”