From The Scottish Sunday Express, 12 May 1013 (story by Paula Murray).
IGNORANT doctors are failing young patients suffering from ME, it has been claimed.
At least 20,000 people in Scotland are affected by debilitating myalgic encephalomyelitis, also known as chronic fatigue syndrome, which can leave them housebound for days, years or even decades.
But GPs are not properly trained to spot the complex illness and often regard it a psychological problem.
ME tends to raise its head in adolescence, and although the causes are still unknown it can be triggered by viral infections, trauma and stress.
Symptoms include extreme fatigue which leaves the patient unable to perform even the smallest of tasks, as well as joint, muscle and head pain, and memory problems.
There are no diagnostic tests for the complex neurological illness and medical schools do not teach it. Some text books still classify it as a psychological condition.
In the past, mistakes in identifying ME have resulted in youngsters being removed from their families by social services because it was thought they were being mistreated or are suffering from mental illness.
Leading ME specialist and paediatrician Dr Nigel Speight revealed there were two such cases in Scotland in the past two years and many more down south.
He added: “Our problem is that the doctors in hospitals are too specialised and do not want to know about ME.
“The moment you mention the abbreviation they panic.
“It is a devastating, very real condition, and to say it is difficult to diagnose does not ring true. There are no diagnostic tests for migraine but you can still diagnose it based on the symptoms. Why not ME?”
Dr Speight said the UK Government’s reform of the benefi ts system is hitting ME patients particularly hard as they struggle to get the evidence needed to back up claims, leaving many in “hopeless situations”.
He added: “Diagnosis validates the illness, but people with ME are at the mercy of doctors who do not believe it exists.”
Although people do recover from ME and live a symptom-free life, relapses can happen. For those in employment it can mean lengthy career breaks and even job losses.
Football pundit Davie Provan was forced to give up his career with Celtic. Lead singer of Scottish indy group Belle & Sebastian, Stuart Murdoch, and international superstar Robbie Williams have also been affected. Charity Action for ME now plans to lobby MSPs and health officials to organise specialist nurses and clinics to aid those diagnosed with the crippling disorder. In Scotland patients face a real postcode lottery, with specialist help only available in Fife, Edinburgh and Glasgow.
Katrina Allen, the charity’s project officer for Scotland, said: “It is not very well recognised and that’s one issue. There’s a real need for more research.
“There is no diagnostic test for it. There is a lot of confusion over the collective symptoms which can lead to misdiagnosis, and there are no concrete, effective treatments.
“We are finding that a lot of people displaying symptoms are approaching their GPs with copies of journal articles on ME to suggest that might be the root cause of their health problems because doctors do not learn about it at university.”
On Wednesday, Action for ME and the ME Association are holding a reception at Holyrood for MSPs and health officials as part of their annual ME awareness week. They are urging decision makers to guarantee those with the condition can access services.
Ewan Dale, of the ME Association, said: “The need to promote understanding and develop treatment remains urgent.”
The story of one mother's nightmare
MERRYN Fergusson had noticed gradual changes in her son Chris. Over two years the youngster would be ill for a number of days, then be back to normal until the mystery symptoms returned.
But after a day sledging near the family home of Galloway, southwest Scotland, the 14-year-old was so exhausted he couldn’t get up from the snow.
She recalled: “It was so sudden, and from that point he was bed-bound and didn’t go to school for three years.”
Her husband Alex, former Scottish Parliament presiding officer, suspected their son might have ME and they sought the help of Dr Nigel Speight.
But Mrs Fergusson, 64, added: “When you finally get a diagnosis you are left on your own with no particular treatment plan and certainly no prognosis – if and when your child will get better.
“It affects every part of your life. As a mother you are most concerned about your child, but at a time when he should be learning independence he needs you around the clock.”
Chris’s condition was triggered by a traumatic event – when he was about nine the family were attacked by armed robbers.
The youngster struggled with sleep for months after until, exhausted, symptoms grew towards the total collapse. Chris eventually returned to the classroom to finish his Highers and now, at 26, is leading “perfectly normal life”.
Throughout Chris’s illness his mother kept a diary, and last year, she published it in the form of a book called What Is Wrong With ME?.
She said: “My son doesn’t want to have anything to do with ME anymore.
“It is scary for the child because often they feel so awful they believe they are terminally ill but not told about it. And it is terrifying for the parents because it is so hard to get anyone to believe there really is something seriously wrong.”
It beggars belief that ME charities are still having to be the major educators of doctors, at whatever stage of their medical development they happen to be, when this really falls under the remit of medical schools and professional organisations and bodies such as the BMA, the RCGP’s and the NICE.
ME charities cannot be expected to continue their sterling work to inform and enlighten doctors in small groups, at this and that venue, here and there in the UK, indefinitely. This truly requires a thoughtfully conceived, coordinated, national, reponsible campaign to provide basic information and education and with the kind of funding that charities can only dream of.
Let us invite the relevant professional bodies to ‘man up’ to this situation as a matter of urgency, to get to grips with the full facts of ME and, in an organised way, assume their full leadership role and responsibilities of information dissemination and education. Let it be part of the medical examination curriculum. If not, why not?
My strong inclination would be to make this a priority in the UK, or we shall be reading the above articles indefinitely and patients and their families and friends will continue to pay an unacceptable price.