The cruel condition affects 250,000 people in the UK
By John Siddle
An 80-year-old from Farnham has had to skip every family gathering, birthday and Christmas over the past 20 years after a shock diagnosis of a devastating ‘living death’ illness.
Nancy Collins a former NHS nurse was struck down with Myalgic Encephalomyelitis (ME) 20 years ago at the age of 60. She was just months into her retirement after a long and happy 40-year career saving lives.
The disease - also known as Chronic Fatigue Syndrome - is a chronic and fluctuating neurological condition that causes symptoms affecting many of the body's systems. It most commonly attacks the nervous and immune systems.
One in four sufferers are so severely affected that they were effectively housebound or bedbound.
Debilitated and weak, Nancy finds daily tasks so many of us take for granted impossible and was forced to miss her daughter Sarah Jackson's wedding in 2011.
She has also had to miss the childhoods of all seven of her grandchildren.
For five years, Nancy could not see anyone as she was so ill she couldn't stand to pick up the phone.
"It was soul destroying," a distraught Sarah, 46, said.
She continued: “I couldn’t see her due to the effects of her ME symptoms.
“Mum was in a lot of pain at the time. Just the brain strain of conversations with other people or even people speaking aloud in the same room was intolerable for her.
“The stress of anything outside of her routine was too much. The emotional toll of long term illness and her sadness of what she had lost and was missing out on. She just couldn't cope.”
Sarah said her mum had had a series of operations and antibiotics prior to being diagnosed.
"Within a year of retiring she started having ME symptoms and it progressively got worse and worse and worse, and she's now been housebound for about five years," she explained.
"She's 80, so it's difficult to tell what health problems she'd have had anyway.
"She has seven grandkids and only one had been born when she retired, so she has missed out on them all growing up. The youngest is nine.
"She missed my wedding, the birth of my children, every Christmas. We cannot do anything as a family anymore because she cannot have noise, light, she cannot read or do any activities at all. She cannot do anything.
"It's all just completely overwhelming for her to do anything."
She added: "Not being able to see her or speak to her for a long period of time was quite soul-destroying and was really difficult. I almost couldn't talk about it at all because it was too upsetting."
Sarah now visits her mum every couple of weeks to wash her hair - a task Nancy is too weak to manage alone.
Although she has recently started to sit in the garden and soak up some sunshine, she hasn't left the house for at least five years and is so weak, she cannot lift a bottle of milk.
Nancy was forced to stay at home when Sarah and Geoff, 44, tied the knot and watched the ceremony via a live link.
However, the sound broke, so she missed hearing their daughter declaring her vows to the love of her life.
Sarah said: "She used to say 'when you have your children I will be there' and it just couldn't happen and she couldn't be at my wedding.
"She wanted to be there, but just couldn't."
Nancy's heartbreaking daily struggle is made marginally easier by a technique known as pacing.
Sarah explains: "She has a routine and sticks to it, minute by minute. There's no moving away from the routine, it's a horrible existence for her and my father."
Every day, Nancy gets out of bed and dresses because "she thinks it's important".
"Everything is very slow and methodical," said Sarah.
Sarah is sharing the story of how ME has ripped their family apart to raise awareness of the cruel condition so little is known about.
"The problem I think is that it's not very well researched, it's difficult to get a diagnosis and there's a lot of scepticism around the condition - people think it's psychological.
"It's debilitating and those people [sufferers] are hidden, they are invisible to society.
"They lay around exhausted, and they may look alright but they're not alright."
Sarah said she believes funding difficulties and misinformation online - usually from people claiming they've been cured of ME - mean it's hard for even medical professionals to fully understand what sufferers are going through and how to help them.
"The symptoms are collective and it is a constant battle," she added.
Honorary medical advisor Charles Shepherd said: “Nancy’s story illustrates just how devastating ME can be and the effect this then has on all aspects of normal family life.
“At best, it leaves people struggling to work or go to school. At worst, it leaves them enduring a tortuous existence, a living death, where they are unable to take their place in society.
“Sadly, many doctors are still uncertain about how to make a diagnosis of ME and how to manage their illness, especially for those like Nancy who have severe ME and are housebound, or even bedbound.
“So those at the severe end of the spectrum and up being severely neglected by both health and social services."
For more information, visit meassociation.org.uk