An illness that’s dogged by lies, myths and prejudices

From the Worcester News, 3 February 2010 (Story by James Connell)

“IF you found yourself in a living hell what would you do to get out?” For most people the answer would be easy – “anything”.

Lynn Gilderdale decided to end her own life aged 31 after suffering from myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), for 17 years. Her mother, former nurse Kay Gilderdale, wept at Lewes Crown Court as she was cleared of attempting to murder her daughter last week.

The trial judge asked why the hearing was even held at all.

Lynn Gilderdale took a combination of morphine and other drugs but her mother admitted helping her with ground-up sleeping pills and anti-depressants in December 2008.

Miss Gilderdale’s harrowing diary entries describe “the never-ending carousel of pain and sickness and suffering”.

Perhaps no image better captures the churning, claustrophobic conveyer belt of physical agony.

In her diaries headed DNR (do not resuscitate), she writes about the life she would never have, of her broken spirit, of living in a single room for 16 years, imprisoned by her own paralysed body, of having bones like those of a 100-year-old woman, of being unable to do even the simplest things for herself, of never being able to fulfil her most cherished dream of having children, of her determination to die with dignity.

Amid such horror it is hard to salvage even the smallest fragment of hope but her ordeal may at least help tear down the rotten edifice of lies, myths and prejudices which still dog an illness once dismissed as yuppie flu but which some experts in the US now postulate is connected to a rare retrovirus, XMRV. People with CFS/ME have often had to weather the ignorant pessimism of others who tell them to pull themselves together or even accuse them of making it up.

They have been told with monotonous regularity they are depressed, often by their own GP, sometimes by unsympathetic members of their own family.

Ian Logan, 62, of Church Lane, Martley, near Worcester, and chairman of Worcestershire ME Support Group, has battled CFS/ME for the last 20 years. He has been racked with its manifold aches and pains, flu-like symptoms and the abrasive mental and physical fatigue which can make rolling out of bed or even wearing clothes seem like running a marathon in a suit of armour.

Mr Logan, who admits he has considered ending his own life when his illness has been at its worst, wishes he could have met Lynn Gilderdale, at least to let her know there were people out there who understood.

He said: “People say it’s ever so sad this girl has taken this option. We wish we or somebody could have been in contact with her or she in contact with us, just sit by her and say, ‘We know what it’s like. We have been there. There might still be hope. Hang on in there for a bit longer’.

“But if you’re being tortured, what way out of it do you take? The answer is any. Everybody wants choice over their own destiny. If there is no hope for the future, do you want to live with it?

“I personally know people in the same position as Lynn, some of whom developed the illness when they were 11 or 12 years old. Twenty years later they’re still housebound and bed-bound. I know of six people in Worcestershire over the last 20 years who have taken their own life as a result of the illness.”

Mr Logan was an engineer before the illness took its stranglehold, forcing him to give up the job he loved. But he remains confident there will one day be a cure, even a vaccination, and like others, feels vindicated by recent scientific discoveries.

When he first developed symptoms, GPs were baffled and it was someone who suffered from ME who suggested the illness could be the source of his symptoms.

He said: “Even thinking makes the brain hurt. It fogs over. You don’t know where to lie in bed. Your arms ache. Your head aches. An overcoat feels too heavy to wear, like a hundredweight. Your shoes feel like leaden boots. It’s like walking in mud, like trying to walk across a ploughed field or writing left-handed when you’re right-handed. The whole of your body feels as awkward as that.”

Mr Logan was prescribed anti-depressants but he said they only made him feel twice as bad and he vowed never to take them again.

Some have argued they relax the body and help people with CFS/ME but Mr Logan has found complementary medicines such as homeopathy and acupuncture and vitamin supplements more useful.

Mr Logan still describes CFS/ME as a “DIY illness” because you have to learn about it yourself rather than relying on GPs or the NHS. He said: “The psychologists have held sway for many years and with the millions they have had, have not yet come up with any answers at all. It’s time they stepped aside and let the physicians have the money.” 

Mr Logan said very little treatment and support for CFS/ME exists on the NHS in Worcestershire and private specialists are often too expensive to afford, especially for someone who is unable to work and dependent on income support.

He said: “At the moment the Worcestershire CFS/ME Service comprises one full-time occupational therapist (Sue Gordon-Saner, who is due to retire), plus a part-time physiotherapist. These two therapists cover the whole county, on many occasions travelling over an hour-and-a-half to visit their patients. There had been a part-time psychologist within the team, but this position has been vacant since last June due to funding, and we have members who have been on an 18-month waiting list to see a CFS/ME psychologist.

“The ideal situation would be for three part-time occupational therapists to cover the county with Sue Gordon-Saner staying in position for a few months during their initial training period.”

A spokesman for NHS Worcestershire, who was sent a copy of Mr Logan’s concerns, said: “Once the specialist retires – from what I understand it’s not imminent – then we will be replacing her.Worcestershire Primary Care Trust provider services are commissioned to provide this service and they will continue to do so.”

 

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